DIRECTIONS PART II: Stories of Halloween, outhouses, potatoes, pesticides, Parkinson’s and mea culpa

DIRECTIONS PART II: Stories of Halloween, outhouses, potatoes, pesticides, Parkinson’s and mea culpa

Prior to my last post, DIRECTIONS PART I: Stay werr you’re to, ‘til I comes werr you’re at, B’y!, which is the first in a planned series, it had been over four months between posts. My instinct, even though I wasn’t raised in a family with a strong religious tradition, is to confess my sins i.e., apologize for my tardiness and seek your forgiveness. However, as I was reflecting on what words would be suitably contrite, I realized that this same lax religious upbringing permits me to conclude not only that I have no obligation to confess but equally I have no reason to apologize. I have done nothing untoward. Rest assured that I say none of this out of any disrespect for you, dear reader.

In November 2016, I wrote a piece that is truthfully a “Last Post” in that it was my reportage on the Celebration of Life for John R. Mills, a man who warranted the many accolades that were thrown his way at the best wake I have ever attended.  I know that learned intellectuals and professionals studying death and dying within all types of societies have researched, interpreted, analyzed and written about the grieving process identifying its stages and concomitant behaviors of the mourners. For the last four months I have been trying to come to grips with the reality that the strikes of the hammer on the anvil were hailing the blacksmith and farrier, beloved by all, to come home.

John’s death affected me in ways that I did not anticipate. He and I shared some quite personal moments in the months (even years) before he left us – moments that gave me insights into his life and his person; moments that give me the strength to face my own future with Parkinson’s, a progressively degenerative neurological disease; moments that help me better understand my own person; and moments that bring calmness to my spiritual self. Most of those moments will remain private and confidential but there are one or two that I feel I can share.

Sometimes there is no ‘option’ in option

During the last months of John’s life, there were many decisions to be made, difficult decisions; decisions no man or woman should have to face. He had sage and respected advice from physicians, health professionals, family and friends so he did not face the decisions or their consequences alone. Still, the final burden was disproportionately his to bear.

What turbulence is created in your intellectual and spiritual self when too much ‘hard’ medical data competes unfairly with too little ‘real’ time?  Some are tempted to call this problem a “quandary,” a ”puzzle,” or a “dilemma” for which there is no correct answer. Others see it as a kind of cost – benefit analysis where the positives and negatives (upsides and downsides) are totaled and offset to inform the decision – making process. Characterizing the problem as having a binary answer (yes/no) disguises the fact that the options under consideration are most often ‘options’ in name only and each option could be equally unthinkable e.g., living longer with a medically assisted but vastly diminished quality of life or dying more immediately from the ravages of your disease on your body and mind.

Here lies W. C. Fields. I would rather be living in Philadelphia”

The language of “options” also implies that we have a say in the matter; that there is ‘free will’ and we can, not change the course of history but, choose the course of history. The heading above is the epitaph (several slightly different versions are often quoted) that W.C. Fields proposed for himself in an article in Vanity Fair (June 1925.) I guess if Fields had the final say he would be alive in Philadelphia rather than in a grave beneath a headstone in Glendale, California.  Wouldn’t we all?  More likely, he would still be in a grave but in Philadelphia rather than California.

I do not deny the existence of free will for many actions we take, or do not take, in the course of life, but does free will always exist for life and death actions/inactions? If free will does exist are we fortunate or are we fortunate if it doesn’t? If there is no higher power than you, then to whom are you accountable? What if you, as the highest power, do not wish to die but your body and spirit can no longer sustain life? What if, at the very end of life, at that moment when our Soul is to be released from its material casing, we have no choice? How does that happen; who makes that decision? What if we do not have a Soul? The list of questions is interminably long.

Living with the dying and dying with the living sucks, doesn’t it? Or does it suck only if dying has greater importance or gravitas than life? The problem is that ‘not dead’ means ‘alive’ and ‘not alive’ means ‘dead.’ In relational terms each condition should be equal; each dependent upon the other being not present. As I only know and experience “aliveness,” that is the only condition about which I can speak and it turns out that I don’t know very much about it at all.

On the positive side, I know nothing about “deadness” and I am not even certain I ever will. This is not to imply that I will live forever but that there may be no consciousness for me after death. It is all very confusing and is very much a “black hole” into which the secret code of life is absorbed after death, never to be relinquished. Perhaps, being prepared to live and to “not live” (rather than “to die”) is the best we can do.

“Tell me a story”

What could I possibly say to John that would be at all helpful? The mind often boggles at times like this but John took the lead and on two occasions he lifted one hand slightly off the hospital bed to signal that he wanted to “say” something and although he was unable to speak without great effort, he signaled that everyone except me should leave. The first time was very private and personal and shall remain that way. The second time he wanted me to tell him a story. I had been sending John copies of my blog for quite some time and I knew that the stories resonated with his own experiences and that he appreciated the humour and context. So I stood by John’s bedside and spun a few stories that had been tumbling around in my brain but hadn’t yet made it into written and more polished form. Today, you are privy (pun intended, you’ll see) to some elements of those stories in a more organized form.

Nothing says Halloween like outhouses … and a potato?

I knew that John would appreciate the particular time period within which the stories are set as well as the many threads within the stories themselves. For me though, the significance of the stories lay in the telling and in the non-verbal responses they drew from John. In those brief few moments, I was thrilled that I was able to remind him of what it is like to be an eight year old boy – a boy who plugged Bob Lang’s sump pump hose with a potato on Halloween night, causing a minor flood in his basement which thankfully was unfinished and unfurnished.

I am sure those of you with sump pumps would like to take that boy and wring his neck, as water in the basement is not what any homeowner wants and a plugged drain pipe could overheat the sump pump motor and blow a fuse or trip a breaker. (See note 2) I suppose it could also start a fire if there was no thermal relay switch. My recollection is that the potato plug in Bob Lang’s sump pump hose caused only minor flooding. I heard no talk of fire or other damage.

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Who plugged the sump pump hose with a potato anyway? Photo: S. Marshall 2017

It is well known that boys over the age of nine, teenagers and immature adults look forward to playing the “trick or treat” game on Halloween night. The idea is simple; if a residence or business did not give you a treat then they could expect a trick to be played on them. Sometimes the older tricksters did not even give the “treat” part a chance; they just went directly to the trick. Tricks came in a wide variety of forms: soaping windows was quick and easy to do but slow and labourious to remove; throwing hay or straw bales on a roof top required the strength of young men; anything that wasn’t tied down and was smaller than a car got moved; but the most common trick was to tip over the outhouse. Almost every house in Altamont had at least one outhouse; likely a “two-holer” but there are many with only one hole. I remember seeing a three-hole outhouse on my grandparents’ farm when I was a kid. I thought it was hilariously funny but you never know, perhaps the number of holes is determined by the size of family … or some other social or economic variable. I am sure someone has done an analysis and with power of Google I could find out but this not the time to wander too far from the subject matter.

Cottage outhouse

A “one-holer” outhouse was common for a residence  Photo: S. Marshall

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A typical outhouse for a business with separate entrances for “Men” and “Ladies”   Photo: S. Marshall

Humour and Horror in the ”honey pit”?

Halloween is not all Hollywood, horror movies and Freddie Krueger. The horror of the “honey pit” predates the Nightmare on Elm Street movies and seems to have persisted over time. One recurring story is that a specific someone e.g., Ed Bulmer, Oz Jackson or Bob Hetherington, was in his outhouse when it was tipped over on its front, blocking the door. These images produced roars of laughter at each telling. Whether it is true or not is hardly the point. Strangely, I do not recall any women being named as someone, pants down, struggling to get out of an outhouse lying on its door in front of its “honey pit.” In fact, there are very few visual sightings of women entering or leaving the outhouses at any time and certainly none at Halloween no matter how strong the call of nature might be.

Sometimes the perpetrators got their comeuppance and one or more of those (no names will be provided here) tipping the outhouse inadvertently found himself (it was always a male) in the “honey pit,” having slipped during the deed. Even though I had been present at a few tipping events when I was young, I never witnessed such misfortunes – and it certainly never happened to me!  Still, it could not have been that hard for someone to nose out the truth after you have fallen into a pit of human excrement and piss, but perhaps like a cat that failed in its leap onto a precarious perch, you just preen for a second or two after falling and walk away nonchalantly as if nothing happened.

It is a safe bet that at least once in the last 130 years someone in Altamont was in the outhouse when it was tipped over and at least once a trickster did fall into the pit after giving the outhouse that one last mighty shove to break the centre of gravity.

The origins of Halloween go back thousands of years and bear resemblance to traditions of the Celtic harvest festivals. Interestingly, in the 1880s and 1890s many Irish immigrants passed through the Ottawa Valley (Merrickville, Carp) and other parts of southern Ontario (Lucan) on their way to settle in southern Manitoba around Musselborough which was founded in 1884 and later renamed Altamont. Undoubtedly, their Irish humour was fertile ground for tricks at Halloween and they relished the opportunity to regale one another with tales of forays on this night when the authorities turned a blind eye to minor infractions. It is not hard to see how stories of falling into the “honey pit” or of being in the outhouse when it was tipped over on its door, the only exit being over or through the foul smelling and disgusting looking pit, would become standard fare whenever they gathered.

I tend to think there is a kernel of truth in most stories that persist over time and the rumours associated with outhouse tipping are no exception. As if to prove this very point, the following entry in the book of memories for the 100th anniversary of the founding of Altamont was written 33 years ago and speaks to the general nature of these outhouse capers at Halloween.

“Halloween was always an exciting time in Altamont, especially in the days before in-door plumbing. It could be a dangerous time too. You had to be careful where you walked. More than one in–a-hurry, prankster found himself the victim of a fate worse than death, having fallen into an uncovered toilet hole.”

“Those outhouses must have been built well to survive the annual “pushing over.” Sometimes they were hauled out into the road and used to block traffic.”

“The most famous back-house in Altamont was also the most fortified. In fact, it still exists today. Bob Lang secured his one-holer with barbed wire. Most years he was successful in keeping his out-house at home.”

“Just when the boys were making some progress in getting his toilet over, old Bob would come running from his house waving his hockey-stick cane in the air. Everyone would scatter only to try again later.” ~ Allan Dawson in Memories of Altamont, 1984 -1994, compiled by the Altamont Centennial Committee.

Yes, Mr. Dawson identifies the same Bob Lang I referenced earlier in the sump pump potato plug incident. Bob seemed to be a target for many on Halloween. Perhaps, it was the challenge of his fortified outhouse and, appropriately enough, the danger of being ‘slashed’ by that hockey stick cane.

Memories of Altamont 1884 -1984 cover

Fire??!!

John was a great fan of stories that had action and he loved it when the characters were hit quite literally over the head as part of the story line. It goes almost without saying that when I was fully engaged in the stories of the outhouse tipping shenanigans, John was more animated and his eyes were visible under their closed lids. I am not sure what he enjoyed the most: the idea of a general assault on outhouses at Halloween; the tipping and dragging of outhouses onto the street to block traffic; the possibility of someone actually being in the outhouse at the critical moment when its centre of gravity was breached; the irony of a perpetrator falling into a cesspool of piss and shit; or the idea, which I heard more than once during the outhouse raids, “Let’s set fire to the fucker.”

Fire was no stranger to Altamont and I am researching a number of fires over the 130 years of Altamont’s existence. As my research is incomplete at this stage I cannot delve into those events too deeply but let’s consider the following questions: What if the Halloween tricksters did set the outhouse on fire? What if the idea caught fire, so to speak? Would there be a conflagration of “shitters” the likes of which the world has never known? Not likely, but even though Altamont was small, setting fire to one or more outhouses in the community would make a statement far beyond the usual Halloween “pranks.” Flaming outhouses are sure to hit the news – even though cell phones were not yet in widespread existence and video of such events would be difficult to find. Rest assured the concept of mens rea would be applied and charges would be laid.

Environment, outhouses and Parkinson’s

In the 1950s and 1960s small villages and unincorporated Local Urban Districts (LUDs) such as Altamont did not have public utilities such as water and sewer. Only a few houses had septic fields and the “water utility” was an electric pump drawing water from a well on the property. But in truth most houses had no electric pump; no running water; no flush toilet; no septic field; and the waterworks was an old creaky hand pump drawing water from a well directly below.

Most people had outhouses where they went to “do their business” or “honey pits” into which they emptied a “honey bucket” from the house, a task I was given when I was about 8 years old, once a day, every day after my sisters had gone to bed. I can still recall the weight of the honey bucket in my hands, stink trailing behind me as I walked through the kitchen and back porch out into the back yard – the air fresh and clean until I passed through. The honey pit was located at the northwest corner of our lot beside our rhubarb and as far as possible from our well but still only a distance of 10 – 12 meters. Cleverly disguised as a squat wooden square box, the honey pit sat there innocuously and surprisingly stench free with a padlock securing the trap door entrance on its top. I always fumbled with the lock and opened it with trepidation as it was usually after dark and there were no lights in that corner of the yard. I don’t know, maybe I expected a monster with extremely foul breath and dripping with soggy toilet paper and excrement to jump out the moment I opened the hatch! I think dad must have tossed in copious amounts of lime to cut the smell and reduce fly and pathogen problems, as I was always surprised that the smell didn’t knock me over and there were few flies when I opened the door

Drinking water and water for bathing was drawn from wells that were dug only a few meters from the outhouses and honey pits. So how far should an outhouse be from a well? I thought this should be an easy question to answer. Turns out that it is not. At the one extreme, some municipalities in Canada prohibit outhouses outright. At the other extreme, unorganized townships have no restrictions or regulations whatsoever … build your outhouse wherever you want – and better yet, don’t tell anyone even if you do build one. It is the best thing about unorganized townships, ‘don’t cha know’ (facetiousness is dripping here). Other people argue that a “few feet” is OK as long as the pit is above the water table. I agree that deep wells accessing  underground aquifers far from the surface pits of outhouses would be quite safe.

Surely, the juxtaposition of drinking water sources and the storage and disposal of human waste does matter and close proximity does not make for a healthy environment. When I was first diagnosed with Parkinson’s disease, I wondered if sanitation issues and/or contaminated well water might be factors contributing to the development of Parkinson’s in an individual.

Well … what about the well?

The well in our house in Altamont was directly under the kitchen. It was a hole about five feet in diameter and about 15 feet deep. There was cribbing for the first five or six feet and the whole thing was covered by a large piece of 3/4 inch plywood forming a landing at the bottom of a set of stairs made from rough-hewn timber, leading to an unfinished basement. Occasionally my father would take the cover off to peer into the depths to determine the water table. About three feet to one side a separate hole about three feet deep housed an electric sump pump to keep the basement from flooding should the water table rise too high.

I have no idea how often a well should be cleaned if ever, or what should be used to clean it. I do recall one time my father cleaned our well. It happened one July when I was about 14 years old. It was a hot Saturday evening during haying season (it’s beginning to sound like a country and western song here) when I returned home from a long day of riding the hay rack behind a baler spitting out alfalfa bales in rapid succession. [Interestingly, the sway and rock of the hayrack across the field is not unlike the feeling that I currently experience with my Parkinson’s balance and peripheral neuropathy proprioception issues.]

I arrived home hot, sweaty and thirsty, thirsty, thirsty! I grabbed a tumbler out of the cupboard, went to our water pump in a small alcove just at the top of the stairs to the basement. I worked the pump handle up and down a few times to fill the tumbler with water that was not extremely cold but as cold as I was going to get. I tipped the tumbler up and let the water drain into my throat. About half way through the last gulp, a very big gulp I might add, I sensed that this glass of water was not all that it promised… or maybe it was more than it promised. I could feel something disturbing in my mouth. I suppressed the urge to swallow and I suppressed the urge to gag, although I don’t know how. Instead, I willed my self to spit the contents of my mouth out into the porcelain sink. A three to four inch long worm began wriggling across the slippery surface. I don’t know how I hadn’t spotted it before tipping the glass all the way to vertical but rest assured that I have pre-checked every glass of water I have ever had since then. It is something I will continue to do into the future. The worm in a glass of mezcal repels me and I can hardly look at it never mind have a sip!

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A word to the wise: always check the bottom half of your glass  Photo: S. Marshall

Of course, my mother was extremely distraught by my account of the worm in the drinking water. The very next day, dad and a neighbour took the cap off the well, pumped it dry and with a rope around his waist dad descended into the well with a brush and sponges. He scrubbed the walls and cleaned the intake on the pump. It seemed to make my mother much happier if nothing else.

I doubt that a worm or two in your well causes Parkinson’s but I do recall that dad was concerned about high levels of arsenic and other contaminants in well water in the area. Even so, I don’t remember our well water ever being tested although I do recall dinner table conversation that it should be. In the end analysis, I think we were too poor to pay the test fee plus the shipping cost to Winnipeg. Dad likely relied on the tests that others in the community had obtained as being indicative of the readings that our well would have. In any case, I don’t think the arsenic was much of a problem but I cannot say the same for the chemicals and/or metals the ground water may have contained, although studies are inconclusive as to the consequences.

We lived in an agricultural area and the 1940s, 1950s and 1960s were times of intensive usage of pesticides on farms, and I know that our father used these same practices in our gardens. (See Note 3.) As always there is considerable difficulty in obtaining reliable data for pesticide usage and funding for research on the health impact of pesticides on the population is relatively scarce. Still, since 2003 seven provinces including Manitoba have passed legislation banning the use of pesticides for cosmetic (non-essential) use. Saskatchewan, Alberta and British Columbia are the holdouts. The definition of “cosmetic use” ranges from use on lawns only to use in all elements of landscaping. Most provinces have some exceptions.

Those initiatives and laws are all well and good but the 60 years between 1940 and 2000 were pretty freewheeling when it comes to pesticide usage. The current legislative bans and regulations come far too late for those of us in our 50s and 60s who are just now being diagnosed with Parkinson’s as we could have been exposed to the pesticide as many as 50 years ago. Indeed, it is much more likely that we were impacted by pesticide use than by the proximity of outhouses and honey pits to well water.

There is also a possibility that some metals, oil and petroleum products seeped into the ground from nearby industry. Whether it (whatever “it” is) ever reached the water table in our case I cannot say as the details were buried forever when our house and the industrial buildings were torn down and the area redeveloped.  In other words, none of these possibilities can be verified, no conclusions can be drawn and all speculation will remain just that, speculation.

I suppose that every Person with Parkinson’s (PwP) has asked two questions: what causes Parkinson’s disease and why me? Do you know that this year, 2017, is the two hundred year anniversary of Dr. James Parkinson’s famous work, An Essay on the Shaking Palsy, which established the disease as a medical condition named after Dr. Parkinson. After 200 years of study the question as to what causes Parkinson’s has yet to be answered.  Scientists are coming ever closer as they research proteins such as alpha-synuclein that misfold and form Lewy bodies that are present in the brains of all those with Parkinson’s disease. Nevertheless there are gaps in the research indicating that perhaps they  are not isolating the precise genetic factor and protein or that the cause is more multifaceted than we care to believe e.g., other factors such as environmental exposures may be complicating or confounding features of the cause(s).

Is there a link between poor sanitation and Parkinson’s disease?

There are many references in the literature to the links between environmental factors and Parkinson’s disease. Could there be a link between poor sanitation and Parkinson’s disease?  I suppose that anything is possible given that a definitive cause of Parkinson’s has not been isolated, but it is not probable. I have not seen research reports showing a correlation between the presence of outhouses or “honey pits” and the incidence of Parkinson’s or other neurological diseases. I am certain that it is not desirable to have human waste “honey pits” in close proximity to wells providing drinking water as it increases the likelihood that insects can pass diseases back to the human population. Nevertheless, I don’t think such proximity was a contributor to my Parkinson’s.

Pesticides are a trigger

Researchers have long suspected a correlation between the incidence of Parkinson’s disease and the presence in the agricultural environment of pesticides. The authors of a newly released (April 2017) literature review and meta-analysis conclude

“ …there is now strong evidence that exposure to any pesticide involves a ≥50% increased risk for developing Parkinson’s disease.” (Gunnarsson and Bodin, 2017)

Let’s be clear though, most research and considered academic writing on this matter is careful to highlight that environmental exposure to these toxins is not sufficient in and of itself to develop Parkinson’s. In order to develop Parkinson’s a person must already possess a genetic marker for Parkinson’s that is then triggered by the environmental factor. Neither exposure to toxins nor possessing the genetic marker is sufficient to result in Parkinson’s but together they may result in Parkinson’s. Not very convincing is it? But, on the other hand it is encouraging that we at least have some leads.

“In conclusion, this meta-analysis provides evidence that pesticide exposure is significantly associated with the risk of PD and alterations in genes involved in PD pathogenesis.” – Ahmed, H. et al. in Biomed Pharmacother. 2017 Apr 13;90:638-649.

“As a neurogenetecist, I’m prejudiced to say that people have a certain proclivity that resides at the genetic level which predisposes them to environmental insults—whether they be pesticides, well water, living in rural areas, or trauma, possibly.” – Northwestern University neuroscientist Teepu Siddique as cited in The Atlantic, “The Brain of a Fighter” by James Hamblin, June 2016

There is also research, although not as strong as the chemical toxin research, that supports the conclusion that well water with high levels of iron, mercury, manganese, aluminum and other by-products of industry are linked to the increase in incidence of Parkinson’s disease. These metals leach into the water table or enter underground streams and aquifers to be drawn on through wells and consumed by the population as drinking water.

Summary offence (misdemeanor) or indictable offence (felony)?

Before I forget, we do need to return to the sump pump potato plug case to tie up a few loose ends. One of those loose ends is the question of whether the perpetrators of Halloween pranks were “mischievous” or “rotten to the core?” I prefer to think mischievous, as it was a different time then, a different morality. Pranks were expected on Halloween. Still, is a potato stuck in the sump pump hose a prank of a different order than an outhouse tipped or moved into the street to block traffic i.e., was the potato incident an “indictable offence” (felony) and the outhouse tipping a mere “summary offence (misdemeanour)?” I have bracketed the terms “felony” and “misdemeanour” even though those terms have been abolished in the Canadian legal system because they still evoke an intuitive understanding of the relative severity of the offence. I have my own view and when I asked John for his opinion his face brightened a little and I knew that he had experience on both sides of this question and there was a discussion to be had, if only he had the strength and ability to talk. I like to think that we wouldn’t be far apart in our interpretation.

Bob Lang's house front view 1982

Bob Lang’s house (front view) Photo: S. Marshall 1982

It seems that Bob Lang spoke to the parents of a different young boy (let’s call him “H”) accusing “H” (wrongly) of the prank. In keeping with their values of respect for elders and discipline for their children, the parents believed Bob and punished “H” accordingly despite his wailing and vigourous protestations that he was not guilty.

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Does this look like a kid who would plug your sump pump hose?

At this point I could tell by some slight movements of John’s mouth muscles and the gentle squeezes from his hand in mine that he could identify with the first young lad who was in truth guilty not only of the potato caper itself, but also guilty of not confessing to the deed (a mischievousness but cowardly act of omission) after his friend (“H”) was wrongly accused and subsequently punished. I knew that John empathized with “H” who was wrongly accused – although I know also that John would find the fact that the wrong boy was punished to be tremendously funny especially if he (John) was the true guilty party.

Bob Lang's house back view 1982

Bob Lang’s house (rear view) where the sump pump hose was located. Photo: S. Marshall 1982

Straw bales burn better than outhouses

To my knowledge no one ever acted on the suggestion to set fire to the outhouses in Altamont at Halloween. However, I do recall that a number of straw bales were set on fire about a half-mile south of the village. It is a strong memory for me, not because I actually saw the bales blazing, but because an RCMP Constable later interviewed me as to my whereabouts on Halloween and whether I could say for certainty that I was nowhere near the burning bales. I was sitting in the driver’s side backseat of the RCMP cruiser while the Constable sat in the passenger side front seat with his clipboard (no computers on those days.) We were well away from others and thankfully well away from my father and his failing hearing – hearing that could be cured with faith-healer-like speed if the conversation was interesting enough.

A second Constable was rounding up a few other local lads to be interviewed in the search for the straw bale pyromaniac. I had no problem in convincing the Constable I was not in the vicinity of the fire … as I was busy sticking a potato in Bob Lang’s sump pump hose. The Constable laughed and said he had no report on such an incident and that I shouldn’t do that sort of thing.  At that moment I knew the policing arm of the state, rightly or wrongly, ranked a potato in a sump pump hose at Halloween to be similar in severity to outhouses tipped on their sides, stinking up the neighbourhood. i.e., they were summary offences at worst and forgivable on Halloween with no charges laid. Fire and arson, on the other hand, were clearly matters of a higher order – indictable offences –  and the RCMP were looking to lay charges.

The Constable dismissed me from the cruiser and called the next kid in line to jump into the rear seat. As fate would have it the next kid was “H,” the very same kid who was punished by his parents for the Bob Lang sump pump hose potato plug caper even though he was innocent. It is a good thing that ”H” did not know who was actually guilty of “his” crime and it seems that the Constable never mentioned it to him.  Perhaps “H” has been searching for the real potato prankster for the past 60 years?

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This kid probably plugged the sump pump hose. He looks like a hood to me!

I never heard another word about the potato plug in the sump pump hose caper or the straw bales which “spontaneously combusted” in Fraser’s field. The petty pyromaniac pranksters (if alliteration for effect can be overdone, this is probably an example) were never found. If there are any outhouses remaining (and I believe there are many,) they continue to be “at risk” each Halloween. On the other hand, the risk of a potato in the sump pump hose attack is relatively low.

Is mischievousness only a children’s thing?

On Halloween nights there are acts of commission and acts of omission which fly beneath the radar of the legal system because they meet a reduced community standard on Halloween. The more that these actions bump against the outer edges of that community standard, the more humourous it is until there is a breaking point. Remember how your mother admonished you to stop waving that sharp stick because you will take someone’s eye out? It is exactly like that; it was all very much fun until Tommy lost an eye.

John R. Mills was a man who loved stories where the action is on the edges of acceptable community standards and/or legality – and the subject matter didn’t have to be as serious as murder either.  He had a keen sense of small-scale mischievousness and that mischievousness fuelled his ability not only to maintain a boy’s view of the world but also to engage in adolescent behavior from time to time during his adult life. I sense that we shared this connection.

On the other hand, what if I read John’s non-verbal responses incorrectly? After all, as a young man he was a member of the mounted force of the Toronto constabulary and he was a superior horseman and rider all his life, winning cutting championships in Kentucky and Kansas. Perhaps he was imagining himself in the role of a mounted officer with the power of a trusty and fearless police horse snorting underneath him as he provided crowd control on Halloween night. In the end it matters not as John was not one-dimensional in any respect and I know he would have revelled equally in a detailed account of police horse vs prankster on Halloween.

A larger moral message?

As I looked at John’s face, eyes alert under the closed lids, a slight smile on his lips, I knew that I had transported him to a different place, free from the weight of medical evidence, medical procedures and medical consequences – all of which pointed to him becoming a medical and demographic statistic of the worst kind.

I sense that some of you may be looking for a more meaningful lesson in morality to emerge from these small town shenanigans and my telling of those stories to John. Sometimes in life there isn’t an obvious moral lesson. Sometimes, when the conditions of life warrant, it is just a matter that we, like John, deserve a few short moments away from the serious (sometimes life and death) decisions men and women have to make. We should be granted that respite.

I could end this post here except for the fact that the end is not here … for those who wish to argue over whether actus reus (the act) and mens rea (you meant the act to have the consequences it did) were both present in the potato plug sump pump case and that a “duty to act” was breached in the act of omission (not confessing) such that a crime was committed… but because I cannot “plead the Fifth” in Canada I am just going to mutter “mea culpa” under my breath and move on … and I would suggest you move on with me except that …. the questions about Parkinson’s go unanswered if we do.

Afterword

What causes Parkinson’s? It seems obvious to me that outhouses and poorly located “honey pits” are not high on the list of suspects. More and more the research data is leading us to the conclusion that pesticides, insecticides and fungicides are prime suspects as co-conspirators and should be investigated with increased vigour and resources. Think of it this way: the environmental violations of outhouses located too close to a water supply are summary offences or misdemeanors compared to the indictable offences or felonies that are negligence and misuse in the development and application of chemical toxins in the environment.

I am no lawyer but it seems we are closer to establishing that, at least for some portion of the Parkinson’s population, there is an actus reus but is there no agreement that there is mens rea by those who develop, manufacture, sell and use the toxins i.e., they did not intend that the chemicals to contribute to an increase in neurological diseases of which Parkinson’s disease is one. But should they have known? After all, they were developing chemicals that work by attacking the nervous systems of those pests they were trying to kill. Would that not twig someone to ask the question, what does this mean for human neurological systems? If it did, then did they find that it was without cause for concern? Did they downplay the consequences? Did they willfully ignore the signs? Is there an act of omission? Did someone breach a duty to act? Are we confident that there is no corporate interference with, and influence on, the research process?

There are so many questions, so little real time and so few resources. The weight of the evidence is beginning to accrue towards a conclusion that exposure to pesticides is related to Parkinson’s disease but don’t hold your breath for chemical corporations to step up and say, “mea culpa”;  to start making amends (reparations is probably too strong) through financial contributions to independent Parkinson’s research; and to defray the costs of pharmaceuticals and medical/therapeutic devices and programs which enhance quality of life for Persons living with Parkinson’s.  That would indeed be a radical change in direction.

NOTES

Note 1:

Definitions:  An “outhouse” is defined as a permanent private privy used as a toilet and situated on a permanent privy pit usually 3 to 6 feet (1 to 2 meters) deep within which human waste is kept, maybe forever. The outhouse is located on private property or at a private residence and serves the sanitation needs of the owner and/or tenants. For further clarity, an “outhouse” is not equivalent to a temporary, transportable, commercial “port-a-potty” used on construction sites and at outdoor entertainment sites and fairgrounds. Such port-a-potties as the name suggests are built to be transported and have an internal waste holding tank that is designed to be emptied at a sanitation facility.

Disclaimers: 

I do not advocate that outhouses be tipped at Halloween or any other occasion nor do I condone such action as serious injury and/or property damage may result.

I am aware through social media sources that port-a-potties are overturned as a prank from time to time. I do not condone such behaviour.

I do not condone the blocking of sump pump hoses in any manner. Serious property damage may result.

Note 2:  As I write this post we are experiencing very heavy rains in eastern Ontario and western Quebec. Many homes have been flooded and their residents evacuated. It is not my intention to diminish the severity of these events by making light of the consequences of the potato plug in the sump pump hose. The situation as described, in Altamont at Halloween of that particular year is not comparable.

Note 3: I follow the convention used in most of the research literature and government documents where “pesticides” is an overarching concept that includes insecticides (insects), herbicides (plants and weeds), and fungicides (fungi.)

APPENDIX: Outhouses are a serious measure of health and sanitation

WaterAid reports that in 2015 there were over 65,000 Canadians (0.2% of the population,) mostly in rural areas who do not have safe reliable access to toilets inside their homes. The UK has over 500,000 (0.8% of the population) citizens without proper inside toilets. Interestingly, WaterAid claims the USA is approaching 0% of pop with just slightly over 36,000 citizens without adequate toilets, bettering both Canada and the UK.

Only 17 countries in the world – including Australia, Japan, South Korea, Singapore and Saudi Arabia – have reported that just about every single household in the country has a safe, private toilet. (WaterAid 2015)

These numbers probably represent the best-case scenario and unfortunately we will never know the actual numbers as the question on indoor toilets is no longer asked routinely on census forms in Canada and other countries. The Washington Post puts the 2014 estimate as considerably higher at over 1.6 million households in the US without adequate indoor plumbing facilities i.e., they do not have one or more of the following: a toilet, a tub, a shower or running water. In any case, many thousands of outhouses are still in use as the primary toilet facility for households, and many more outhouses serve as secondary or back up facilities for use when the indoor toilet is otherwise occupied.

When my parents moved to an apartment in The Pas, Manitoba in the early 1970s after our father got a job at the pulp and paper mill there, I recall how excited my mother was that they were on town water and sewer. In fact, it was the very first time (ever!) that our mother had lived in a home with running water and a flush toilet. Needless to say, she was thrilled!

REFERENCES and RESOURCES

Ahmed H, Abushouk AI, Gabr M, Negida A, Abdel-Daim MM, “Parkinson’s disease and pesticides: A meta-analysis of disease connection and genetic alterations.” https://www.ncbi.nlm.nih.gov/pubmetd/28412655

Alberta Environment and Parks, http://aep.alberta.ca/water/programs-and-services/groundwater/documents/AlbertaWaterWellSurvey-Report-Dec2010.pdf

Backcountry Canada Travel, http://www.backcountrycanadatravel.com/outhouse-culture-canada/

Canadian Centre for Occupational Health and Safety, Fact Sheet on Pesticdes http://www.ccohs.ca/oshanswers/chemicals/pesticides/general.html

Canadian Journal of Neurological Science https://www.cambridge.org/core/journals/canadian-journal-of-neurological-sciences/article/geography-drinking-water-chemistry-pesticides-and-herbicides-and-the-etiology-of-parkinsons-disease/B8A09AAE44121012B905C358CCE9A8EF

Cosmetic Pesticide Ban Manitoba https://cosmeticpesticidebanmb.wordpress.com

Cottage Life http://cottagelife.com/environment/10-things-you-probably-didnt-know-about-outhouses

Grandpa Remembers: Tipping over Outhouses, July 25, 2010. http://grandpa-remembers.blogspot.ca/2010/07/tipping-over-outhouses.html

The Guardian, “Can you catch Parkinson’s?” https://www.theguardian.com/education/2002/apr/04/medicalscience.healthandwellbeing

Gunnarsson, Lars-Gunnar and Bodin, Lennart,“Parkinson’s disease and occupational exposures, A systematic literature review and meta-analysis,” Scandinavian Journal of Work, Health and Environment, online first, April 2017

Hamblin, James, “The Brain of a Fighter” in The Atlantic, June 8, 2016 https://www.theatlantic.com/health/archive/2016/06/ali-and-parkinsons/485798/

Kashatus, William C, “Outhouse has faded from region’s landscape,” in Standard Speaker, June 26, 2011 http://standardspeaker.com/outhouse-has-faded-from-region-s-landscape-1.1165644

Law Lessons, http://www.lawlessons.ca/lesson-plans/2.1.definition-and-principlesb

Mayo Clinic, http://www.mayoclinic.org/diseases-conditions/pinworm/basics/causes/con-20027072

Parkinson, Dr. James, Essay on the Shaking Palsy, originally published as a monograph by Sherwood, Neely, and Jones (London, 1817). Republished by J Neuropsychiatry Clin Neurosci 14:2, Spring 2002.

Parkinson’s Disease Foundation, http://www.pdf.org/environment_parkinsons_tanner

Parkinson’s Saskatchewan, http://www.parkinsonsaskatchewan.ca/pd/nd.html

Popular Mechanics, http://www.popularmechanics.com/home/how-to/a3896/4305543/

Small Cabin, http://www.small-cabin.com/forum/5_781_3.html

Summers, R. (2010). Alberta Water Well Survey. A report prepared for Alberta Environment. (University of Alberta: Edmonton, Canada).

Survivopedia, http://www.survivopedia.com/waste-disposal/

Warick, Jason, Canadian Broadcasting Corporation News, Saskatoon, “U of S, prof under fire for Monsanto ties,” May 17, 2017 http://www.cbc.ca/news/canada/saskatoon/u-of-s-prof-under-fire-for-monsanto-ties-1.4100399

Washington Post, https://www.washingtonpost.com/news/wonk/wp/2014/04/23/1-6-million-americans-dont-have-indoor-plumbing-heres-where-they-live/?utm_term=.42d2da15b8dd

WaterAid, IT’S NO JOKE: The State of the World’s Toilets 2015 Its_No_Joke_2015_the_state_of_the_worlds_toilets.pdf

Wikipedia, https://en.wikipedia.org/wiki/W._C._Fields

© Stan Marshall (The PD Gardener) 2017

 

LIST OF POSTS IN THIS SERIES

DIRECTIONS: Taking the Scenic Route to Parkinson’s and Beyond

DIRECTIONS Part I: “Stay where you’re at ’til I comes where you’re to, b’y“

DIRECTIONS Part II: Stories of Halloween, outhouses, potatoes, pesticides, Parkinson’s and mea culpa

COMING SOON!

DIRECTIONS Part III: (Working title) Detours and your GPS 

 

DIRECTIONS: A Series of Posts on Taking the Scenic Route to Parkinson’s and Beyond

DIRECTIONS: A Series of Posts on Taking the Scenic Route to Parkinson’s and Beyond

Foreword  

This post is the first in a series called Directions: Taking the scenic route to Parkinson’s and beyond. I explore some of the ‘things’ that have changed, are changing and will change the ‘direction’ of my life. I know, ‘things’ is a very imprecise word and is overused to refer to almost anything (well, there you go, eh?).

Do you know that delay and equivocation in decision-making is one of the many non-motor symptoms of Parkinson’s? I kid you not. I am not going to blame all my procrastination on Parkinson’s but the title of this post eluded me for a very long time. It did not come easily. It rarely does but this time it was doubly difficult. I kept delaying a final decision and even now I am not convinced I have hit the right chord. You see, words are tricky things – double entendre, multiple meanings, concepts nested within concepts, different levels of discourse with different intellectual and cultural origins. Sorry, but lately I just can’t help but be amazed by words and language. It is as if I have been near-sighted all my life and then thrown abruptly into a world where my micrographia, an early symptom of Parkinson’s disease, makes it impossible to read my own handwriting but is also, quite magically, a feature of enlightenment. It is all a matter of perspective.

At one point it occurred to me that perhaps I should follow journalistic practice and task someone else with the responsibility to decide on a title. I remember being amazed when I first learned that journalists don’t (at least in those days) write their own headlines. That explains why over the years I have noticed a few headlines that are out of sync with the text of the article. One of my favourites is an article reporting on the government of Sri Lanka sending a representative to an international meeting. The headline read, “Lanka plans to attend.” It is so nice to know that Ms. Lanka has sent in her RSVP.

Eventually, I settled on the title: Directions: A Series of Posts on Taking the Scenic Route to Parkinson’s and Beyond. Of course, that was some time ago as I went through further periods of procrastination and indecision about the content and order of publication for the first few posts. Stay tuned as this is still a work in progress.

The idea of exploring the many different directions of my life has been tumbling around in my brain for quite some time. It should be simple enough, don’t you think, to articulate how I got to be the person I am … at this moment…. in this place… with a traceable historical timeline complete with events and documents? You would think so but it is never that straight forward, is it?   My research and rough drafts started out smoothly enough but it soon became evident that the process of uncovering, analyzing, interpreting and communicating the direction of one’s life is a daunting task and, dare I say, disorienting, unless you have a reliable metaphorical gyroscope to stabilize the entire endeavor.

Unfortunately, the temptation is to write a chronological account and that turns out to be deadly boring and resembles an application for life insurance. I quickly scrapped this approach. I once worked for someone who would comment on my work by saying, “I don’t know what I wanted… but this isn’t it.” There was never a reason given as to why it didn’t meet the grade or what I should consider doing to correct the shortcoming. The lack of feedback meant that I had to become skilled at listening, guessing, extrapolation, and interpretation in order to survive. While these are very useful skills they are quite inefficient as tools. Am I being reduced once again to a guessing game, but this time it is trying to figure out the nuances of my own life so that I can understand myself? Whoa, that sounds like I should be booking some couch time with a professional. We’ll leave that for the moment.

Taking a small step back, I can safely say that a chronological “listing” or cataloguing of ‘things’ that I think are important is not my primary objective. Oh, there will be ‘things’ and ‘events’ but they must be accompanied be “the ‘stuff’ of life” i.e., by whatever makes the static, dynamic. My trusty thesaurus suggests that “stuff” is a synonym for ”things” but that is not how I see it. For me “stuff” is what gives “things” life but you should also know that: “stuff” can lay dormant for years and be resurrected with one fortuitous nudge or change in ‘direction’.

While I am at it I may as well clear up a few other potential ambiguities. When I say the “direction” of one’s life, I do not mean ‘achievements,’ ‘goals,’ ‘legacy,’ or ‘good deeds,’ which can sum up one’s worth on earth. Neither do I mean ‘destination,’ or ‘defining moments.’ I am not trying to reach nirvana, to go to Mecca, or even to see Altamont, Manitoba one more time. And if I wait until I win the Nobel Peace Prize or equivalent before I consider my life to be worthy enough to bring into the spotlight, I will be waiting a long time. That doesn’t mean I won’t go places or that I won’t live a full, useful and worthy life such that people will speak well of me after I am no longer physically present; it just means that in as much as these form part of the ‘direction’, they are not influencing agents with the ‘stuff’ necessary to alter course, those ‘things’ (positive and negative) that have ‘nudged’ the ‘trajectory’ of a life onto a slightly different ‘track.’

Marshall house  in Altamont Manitoba

The house of my youth – both are now gone Photo: S. Marshall 1982

Being astute readers as you are, you know that the word “direction” has many meanings and nuances. For the sake of clarity, I rarely use the word “directions” to mean “instructions” so I will not be issuing recipes for matrimonial cake; or shop instructions on how to build a three – story 15 unit wren house; or instructions on how to make a snowflake quilt. When it comes to matters of life, each of these approaches would be tantamount to telling you how to live your life. No matter how much I might want to tell you how to live your life, I won’t. Rather, in this series I am content enough to expose the vectors of my own life such they convey a more complete understanding to me … and to others whose eyes may pass over these words.

The ‘things’ and ‘stuff’ I find most intriguing and insightful are usually small and maybe insignificant to others. Why they are intriguing may not be evident immediately and might be revealed only upon focused reflection at a much later time, but know this, the consequences of ignoring a small error in measurement in carpentry can be monumental when you get to the corner or to the top of the wall. The old saw (no pun intended), “measure twice, cut once,” has broad metaphorical applicability to all areas of life.

In sum, life is not a curriculum vitae or a compendium of artifacts; it is a force inherent in every aspect of being, no matter how exciting or how dull and insignificant it appears. This force is integral to every life as it establishes the ‘tendencies’ within the ‘direction’ of life. Or put another way, “I didn’t know that the little ‘things’ would turn out to be so big and that so many ‘factors’ can influence and change the parameters of the original course.” We shall leave aside the question of how the original course is set in the first instance for the moment. Right now, my task is to illustrate ‘stuff’ in the comings and goings of everyday life.

Altamont MB gallery_128_2013_75075

Altamont, Manitoba 1985 Photo: United Grain Growers

There is a Buddhist saying, ”Happiness is a journey, not a destination.” It has been echoed by many others including Ralph Waldow Emerson, Aerosmith, theologian Lynn H. Hough substituting slightly different words for “Happiness” e.g., love, religion, success, etc. I believe we should indeed enjoy the journey as life has a rather inhospitable destination (dead is dead) for those who do not believe there is a Heaven.

I prefer to think of this post as a journey along the Red or Assiniboine Rivers in Manitoba, especially in the spring and summer. In spring they overflow their banks seeking to breach every dam and flood every unprotected low-lying land with free flowing and often-undefined waters that carry danger as well as richness. Once the flood subsides and summer arrives there is no need to spend the rest of the journey treading water just to keep our noses clear. The rivers are now within their channels and meander with a lazy habit and we have time to contemplate the rush of earlier times. I have found that one of the most important questions we have to ponder is whether the river has determined our destination or have we navigated the river?

As regular readers know, neither my process nor thinking is linear. In keeping with that approach, I often do not have a self-evident point of beginning but begin we must, so read on to Part I.

DIRECTIONS Part I: Stay werr you’re to, ‘til I comes werr you’re at, B’y!

“Stay werr you’re to, ’til I comes werr you’re at, B’y” is a saying that has almost become synonymous with Newfoundland and Labrador. [See Note 1) When you look at the words sitting rather alone and limply on the page, it doesn’t seem all that funny or profound. Still, when you catch it mid-monologue, swimming in a stream of consciousness and slang tripping off the tongue of a fast talking (not slick, just talking fast) descendent of the original Indigenous people and the Irish, French, Scots and English who came to the shores of “The Rock” in the early 16th century, the oratory is theatre, comedy, music and gospel with a smear of blasphemy and a nod to graffiti.

Near Cape St. Mary's

Near Cape St. Mary’s, Newfoundland and Labrador Photo: S. Marshall 2015

At my former workplace we employed highly trained and very skilled professional interpreters (English to/from French interpretation primarily) for our National Executive Board meetings. Occasionally the interpreters would apologize that they could not provide proper interpretation into French when Brother O’Leary from Newfoundland and Labrador was in a jocular mood and in full swing in English with his Newfoundland accent and slang. It had less to do with “salty” language than it had to do with Brother O’Leary’s version of the “English” language. Neither the interpreters nor the rest of us English-speakers could understand a word he was saying. We often joked that we needed a third interpreter for the English spoken in Canada’s youngest province. [See Note 2]

Now, the language and the accent on “The Rock” is such that some people recommend that you travel with an interpreter if you are a “Come from away” i.e., someone who is not local and therefore without a family heritage in Newfoundland and Labrador. However, my lover and I found the locals to be quite tolerant and accommodating and would switch to an understandable form of central Canadian English, especially if a commercial transaction was imminent.

Near Cape St. Mary's NL

Do sheep and sheep dogs understand the language of Newfoundland? Maybe they are smarter than I am …. Photo: S. Marshall

Maybe it is my inquisitive nature but I find that the instruction, “Stay werr you’re to ’til I comes where you’re at, B’y” is one that begs the question…. well, what was the original question that spawned this response? The question undoubtedly was, “Where am I and how do I friggin’ get out of here?” The Newfoundlander is kindly offering assistance by coming to get you. I hope so because if you have ever tried to follow directions given by a Newfoundlander, you might inadvertently go “out on da neck” instead of “down da arm” or “up da shore”… or is it up da arm and down da bay? …. Oh, never mind. [See Note 3]

Of course there may be extenuating circumstances. For example if you are “some stunned” or are recovering from a “Screech In,” you might be a little foggy on how you got to be where “you’re to” or exactly where “you’re at.”  I don’t consider myself to be particularly dense and I have always gotten along well with the sisters and brothers from Newfoundland and Labrador but the night that I was “Screeched In” is indeed a little foggy in places and I am at the mercy of anyone who has a better recollection of what transpired that night than I do.

Is the “Screech In” a rite de passage?

An argument can be made that from a cultural anthropological perspective the “Screech In” is the celebration of a “rite de passage” which confers a new status on selected candidates. How and why the candidate has been selected is of no great relevance except that the selection is not random i.e., each and every citizen does not have an equal probability of being selected. This means of course that if selection is not random then it must be determined in some manner. For example, in many societies age is a determining factor and these ceremonies mark important moments as a child becomes an adult and accepts responsibilities as an adult. In this case, it appears that the candidate must have already achieved the age of majority (19 years old) in Newfoundland and Labrador in order to fulfill the requirements of the ceremony. Another determining factor is that the candidate must be a “Come from away (CFA),” i.e., a resident of someplace, any place, other than Newfoundland and Labrador, and you must have wandered by design or by accident into the territory of the Newfoundlander, and been selected (or even self-selected) to be a participant in a Screech In.

The significance of the CFA designation cannot be overstated. Newfoundland and Labrador is similar to many other unique social groupings – it is very difficult to penetrate from the outside. Once a CFA, always a CFA or so the saying goes. Even if you lived on “the Rock” for 40 years, it is likely that you will be identified as a CFA. With any luck, your children will not carry the designation but they might. I am reminded of a woman who lived in Altamont, Manitoba for over 50 years. She initially moved to this small village as a schoolteacher and when she married a local farm boy, she stayed. Together she and her husband built a successful business and raised a family. In spite of the lengthy time spent living in and participating in community activities, she could never quite escape that somewhat derisive moniker, “city girl.” If her ways didn’t quite mesh with the locals or if she didn’t know how to do something, it could be explained by saying, “Oh, she’s a city girl, ya’ know.”

The “Screech In” carries the promise of a change in status from a pure “Come from away” to “Honourary Newfoundlander.” Cultural anthropologists tell us that there is a period of ambiguity or disorientation called “liminality” when the subject has moved on from her/his old status and has not yet accepted her/his new status i.e., s/he is on the “threshold.” Everyone who has been “Screeched In” reports that they experience this period of fogginess and disorientation as they shed the pure “Come from away” status and accept their new status as an “Honourary Newfoundlander” or a “Screeched In Newfoundlander.”

All that for an asterisk?

The problem is that the whole “Screech In” thing is bit of a fraud if you stack it up against the measure of a bona fide rite de passage. It seems that in the mid-1970s a St. John’s nightclub owner named Bill Walsh and a few of his cronies cooked up a fake tradition and called it “The Screech Club” to attract out of province business. It was pure genius because what better way to attract tourists than to give these “Come from Away” a chance to become something they desperately wanted to be but could never become – a member of a unique, quaint, welcoming society where its citizens carry a sense of humour 24/7 for 365 days a year.

“Lard-Tunderin’ Jeezus B’y!” The clubs on George Street in St. John’s are usually packed with tourists all too willing to be screeched in – all too willing to be called to the altar of cod in a rite de passage which confers honourary status but no actual rights. Funny thing that; the ceremony provides the candidate with a sense of inclusion in a culture that specifically excludes her/him. The “Screech In” rite de passage admits you into the “Royal Order of Screechers,” a club to which native Newfoundlanders would never belong … and can never belong. The “Screech In” leaves you almost exactly where you started – as a CFA with an asterisk for the official statistics (CFA*) – a “Come from away, Screeched In.”

Armed with your certificate attesting to your status as a “fake” Newfoundlander, you are now welcomed with generous and open arms in all ports and as an added bonus you can watch with a new appreciation the many fine comedians from “The Rock” who have dominated Canada’s comedy venues and television shows for decades. Andy Jones, Rick Mercer, Greg Malone, Cathy Jones, Mary Walsh, Tommy Sexton, Shaun Majumder, Mark Critch, Bob Joy, John Sheehan, Jonny Harris, Diane Olsen and many others have established Newfoundland – style comedy and political satire not just as entertainment for the masses but as mandatory education for the elite.

My God, there is no cod

I personally was “Screeched In” at an odd ceremony 20 years ago in Marystown in the Burin Peninsula late on the night of the “scoff n scuff” (dinner and dance) of the annual convention of our Newfoundland and Labrador Division. An “appointed” representative (a native Newfoundlander) of all that is good and wholesome in NL ushered us into the dance hall, accompanied by suitable music (“I’s da b’y wha builds da boat…”) and a huge outburst of hands clapping, boots stomping, and voices hollering and hooting. Those of us who were “Come from Away” were directed to form a circle holding hands as we did so. The Officiant, wearing the traditional yellow sou’wester and slicker, solemnly called the congregation to order and began the liturgy of the “Screech In.” I don’t recall everything about the service but some elements still wash through my memory banks at high tide.

Officiant (addressing all who are “Come from Away”): “Do ya want to become Newfoundlanders?”

“Come from Away” (collective response): “Yes B’y!”

At this point each “Come from Away” is called forward individually and his/her name clearly stated for the record. The Officiant proceeds to tell the assembled crowd a few amusing “lies” or stories that must have been true because no one could ever make up such ridiculousness, about that particular person (clearly, the Officiant had been briefed in advance.) At the time I was an Executive Assistant to our National Secretary Treasurer so there was much joking about how important it is to “follow the money” [little did they know how close this jesting was to the truth about some practices within the National Secretary Treasurer’s Office – more on this at another time perhaps.] Also, a few shots were taken at my “landlubber” and “mainlander” origins in Manitoba and the Canadian prairies.

Officiant (addressing each “Come from Away” by name): “Are ya a screecher?”

Come from Away: “ ‘Deed I is, me ol’ cock! And long may yer big jib draw!” [Translation: “Yes I am, my old friend, and may your sails always catch wind.”]

Newfoundland Screech

The bottle was full like this one when I started…. Photo: S. Marshall 2017

At this point the liturgy directs that the Come from Away must to kiss a cod. Sometimes the cod are not in plentiful supply so there are a few acceptable substitutions e.g.,“Newfy steak” (baloney,) the rear end of a rubber puffin, or any other ugly non-cod fish that can be found. In this particular case, a helpful Newfoundlander with a warped sense of humour had located a package of frozen capelin (a small fish that spawns on the shores of Newfoundland.)

Officiant (getting into the spirit of things): “I decree the capelin to be sacred for the purpose of this Screech In.”

Officiant (after a brief pause to consult with a group of locals acting as advisors): ”The absence of a proper “Host” (the Cod) and the sanctification of the capelin can only be granted if the “Come from Away” not only kisses the capelin but also bites its head off.”

There was uproarious laughter and hooting from the assembled throng. I suspect that alcohol was a major factor in this decision but as the Officiant decreed it, it must be done, and it was done.

One of the Officiant’s more thoughtful advisors provided a tin bucket into which the “Come from Away” could spit the head of the capelin if s/he chose not to swallow it. The bucket also proved to be a suitable vessel for depositing anything else that came up to accompany the head of the capelin.

To my knowledge not one “Come from Away” actually swallowed the capelin head but to our credit (I think) each of us did bite the head off. It should be noted that each “Come from Away” was given a shot of Screech, which s/he was required to down before kissing and then biting the head off the capelin. The Officiant’s advisors, being naturally helpful, were ready with a second shot of Screech so that the taste of the capelin could be washed from our sophisticated “Come from Away” palates immediately after spitting the capelin head into the bucket – and after we finished gagging of course. The bucket again proved to be handy for a few of the “Come from Away” group immediately after the second shot of screech hit her/his gullet.

Certificate of Screech In Stan Marshall 1997

Kept my certificate just in case ….

Officiant: “You have honoured the body and blood of our ancesters and the great God of the Cod so by the grace of the ghost of Joey Smallwood [the last founding Father of Confederation as he was premier of NL when they joined Canada in 1949] and the authority vested in me by the Province of Newfoundland and Labrador, you are hereby enrolled in the Fraternity [and Sorority] of Screeched In Newfoundlanders.”

Once you have received your certificate it is advised that you carry it with you whenever you return to Newfoundland and Labrador as proof of your “Screeched In” status. Failure to have your certificate on your person is equivalent to revoking your status and it is mandatory that you experience the “Screech In” ceremony once again to bring your status up to date.

If you are an astute critical thinker, and not too foggy, groggy or stunned, you will know that come the morning there are questions that will need to be answered – no, not the questions that I usually ask in sequence after a night of celebrating e.g., “Where are my glasses? Where is my wallet? Is there any money in my wallet? Where are the painkillers?  But first things first, before you go to sleep or fall down where you are, your most important task is to remember that there are important questions that need to asked. I enumerate only a few of them here to start the process because I find the more that I think about these questions, the more questions I have.

  • Does it really matter if a rite de passage originated as a crass marketing tactic to fill the pockets of nightclub owners and the distillers of Screech and other beverages?
  • Is it possible or even desirable to be a candidate in the same rite de passage more than once e.g., can you pass into adulthood twice?
  • Is it possible that the “Screeching In” ceremony is more for the amusement of the native Newfoundlanders than it is for the Come From Away (CFA)?
  • Does a steady stream of CFA celebrants kissing cod (or biting the heads off capelin), drinking screech, singing, dancing and otherwise being made to look the fool tickle the Newfoundlander’s funny bone (that place at the back of the elbow where the ulnar nerve rests against a prominence of the humerus.)
  • Can a “Come from away” ever learn the language of Newfoundland?

So many questions, so little time … for a chucklehead like me to learn a new language and hatch a plot to exact revenge by dressing up like a mummer at Christmas… wait I am getting carried away. One thing I know is certain; it is pointless to try to get the last word in with a Newfoundlander.

Still flappin’

The celebration of the “Screech In” for the newly minted Honourary Newfoundlanders in Marystown continued for at least another four hours. I recall the President of our NL Division (let’s call him Wayne because everyone else in NL does and they wouldn’t want us to stand on formality) dancing a little jig as he stepped to the Convention podium first thing the next morning, all bright eyed and bushy tailed with not a hair out of place while the rest of us were “all mops and brooms” and looking like we had been “hauled through a knot hole.”

Wayne addressed the assembled delegates at 9 a.m. sharp with an informal report on the dance the previous evening. He had supervised the entire event personally to ensure it was a huge success and to win a bet with the National President at the time (let’s call her “Judy” because everyone else does) that he could keep her dancing until the band “gave’er up” and that was at 4 a.m. Wayne relayed that he was glad he hadn’t taken his shoes off when he went to bed because when he woke up in the morning, he looked down and his feet were “still flappin’.” I dies at ‘im [translation: he is some funny guy.]

I didn’t know it at the time but Wayne’s professed experience of continuing the dance all night even after going to bed, was to be my future. I wake up often to find one or both of my feet “flappin’” as my medication has worn off.  These involuntary muscle movements are more than mere tremours which many of us identify as being Parkinson’s; they are strong, constant, persistent, repetitive and painful muscle contractions over which I have little or no control without pharmaceutical assistance. I sometimes use some meditative techniques but they are successful only to a limited degree in some speciifc instances.

Don’t get me wrong; Wayne’s little joke is still very funny in context but it is not quite as fun or funny if you consider what a Person with Parkinson’s (PwP) feels and faces upon waking with feet ‘flappin’.” Nothing is absolute, as they say, and thank goodness there is room for humour in many things that we may think to be sad, painful or grim. Sometimes flappin’ feet can be funny and fun and it makes us laugh when our two kittens think it is a game and pounce on my feet as I kick and wriggle under the covers.

As long as the arse isn’t outa ‘er

You know, the highly expressive language of the Newfoundlanders is exactly what I needed to help me identify, clarify and sum up my objective for this series of blogs. My goal is to begin to understand of how I got ‘here’ from ‘there.’ What happened along the way? Have I passed through the requisite rites de passages on my journey to my present status in society? How many of those events were real and how many were fake and does it matter if they were ‘meaningful?’ What kept me on course and what threw me off course?

Usually when a Newfoundlander says that the “arse is out of ‘er,” s/he is referring to the fact that the economy is in hard times and that things have gone wrong, very wrong and probably out of control. I hesitate to think of what that means when applied to the direction of a person’s life. I am counting on not hearing, “The arse is gone right clean outa ‘er,” when I continue my journey to explore the factors that hold my life together.

We’ll continue the quest in these and other questions in Directions Part II: No mea culpa here, coming soon to thepdgardener.wordpress.com.

NOTES

Note 1: On December 6, 2001 the Constitution of Canada was amended to change Newfoundland’s official name to Newfoundland and Labrador. In keeping with that change, I will use the full Newfoundland and Labrador assignation when referring to the political entity, the province. However, when I reference the cultural entity that is Newfoundland, I will use the short and original form, Newfoundland.

Note 2: It is nice to be referred to as young and I bask in this moment as Newfoundland came into Confederation as Newfoundland in 1949, the year in which I was born. It became Newfoundland and Labrador in 2001, see note 1 above. For those who are asking: Nunavut became Canada’s youngest Territory, not a province, when it separated from the Northwest Territories in 1999.

Note 3: Shaun Majumder is a comedian of note and a native Newfoundlander. He has a very funny bit on what happens when you ask for directions to a pharmacy in Newfoundland and Labrador. Be warned that this clip does contain mature language and explores some mature themes. It can be found at https://www.youtube.com/watch?v=vxR6YPW24X0

RESEARCH AND REFERENCES

Martin Connelly, ”Why I won’t be screeching” in The Morning News https://www.themorningnews.org/article/why-i-wont-be-screeching

Encounternewfoundland.com http://encounternewfoundland.com/newfinese-101-words-and-phrases-youre-likely-to-hear-on-the-rock/

en.wiktionary.org https://en.wiktionary.org/wiki/arse_is_gone_right_out_of_%27er

Explorenewfoundlandandlabrador.com http://www.explorenewfoundlandandlabrador.com/newfoundland-words-and-sayings.htm

Joebattsarm.ca http://www.joebattsarm.ca/Old_Sayings.html

Shaun Majumder, Newfie Directions, on YouTube.com https://www.youtube.com/watch?v=vxR6YPW24X0

newfoundlandlabrador.com http://www.newfoundlandlabrador.com/AboutThisPlace/PeopleCulture

© Stan Marshall (The PD Gardener) 2017

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LIST OF POSTS IN THIS SERIES 

DIRECTIONS:   Taking the Scenic Route to Parkinson’s and Beyond    

DIRECTIONS Part I: “Stay where you’re at ’til I comes where you’re to, b’y“    

COMING SOON!

DIRECTIONS Part II: Stories of Halloween, Outhouses, potatoes, pesticides, Parkinson’s and mea culpa

A Celebration of the Life of John R. Mills, Farrier, Renaissance Man, and Man’s Man

Preface

Celebrating the Life of John R. Mills was, and continues to be, an intensely personal affair and while I am making my insider view public by writing this blog post, I ask you to be respectful should you decide to respond, comment or question.

This account of the day’s activities is neither exhaustive nor inclusive and does not follow the precise chronological order in which events occurred. I have also taken some liberties in my role as amateur reporter to interject commentary, interpretation and analysis which, I believe, is consistent with the intent the day and enhances the readers’ understanding of both the Celebration itself and the life of a beloved Kentucky farrier

Finally, please note that I am Canadian and ‘writing Canadian’ means that some words are spelled differently e.g., I love the colour orange.

Two irrefutable facts

Today, I am a little at a loss as to how and where to begin so I shall begin starkly and painfully with the first irrefutable fact. John R. Mills is dead. [See obituary in Appendix.]

The second irrefutable fact is that John R. Mills is alive. “Film at 11” as the newscasters of early television used to say.

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John R. Mills

Reportage (is not an equestrian sport)

I am neither a trained nor accredited journalist but today I shall engage in a little reportage of the funeral … no, service … no, ceremony … no, commemoration … no, celebration … no, party … no, event …. oh what the hell, let’s just call it for what it was – a migration of anyone who was anyone in the life of John R. Mills, Farrier and Blacksmith, to a gathering at Woodgate Farm just outside Louisville, Kentucky to pay homage through prayer, poetry, song, music, storytelling and many a glass with a “wee dram” of scotch or a ‘fizz’ of champagne raised in toasts to this humble yet “deeply intelligent, quirky and feisty” man.

John’s death came as no great surprise to anyone in the know for he had been suffering from some form of pernicious lung disease for several years. I am not going to go into the medical diagnosis and jargon here but the inside word was that John was already entering the second decade of a prognosis which had him dying half way through the previous decade. In this respect, John was a fighter and an inspiration to many, including myself, as he clung to life “for dear life.”

Stereotypes, electric bikes, full body kayak rolls and farewell tours

It is well known that farriers and blacksmiths are muscular – strong and powerful as they wield hammer against red hot metal. And no matter the season they were drenched in perspiration as they tended their forges, the little fires of hell that live in their shops and accompanies them on their trucks. Farriers are equally at home filing the teeth or clipping and shoeing the hooves of animals that can weigh a tonne (2,200 lbs) and have a propensity to kick and bite. Handling these animals requires strength, skill, tact and patience. And of course you must also possess a personality that can handle the owners of these animals, no small task.

 

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A nosy horse on Woodgate Farm Photo: Stan Marshall

 

John, the handsome and muscular young farrier and blacksmith was a stellar example of the ideal. He still exists in youthful form in photographs and lives on in the memories of those who knew him. However, the physical manifestation of that particular farrier had long fled the scene before his passing. John’s physical presence was greatly diminished in the wake of a disease and illness that slowly stole strength from his powerful frame and inevitably had a wearing effect on his psyche but not on his agile brain.

Yet, John persevered and extended his time on this earth for as long as his incredible constitution would permit. There is no doubt that these last few years were difficult ones for John, for his family and for his close friends. As you walk ever closer to the end of life, you reflect on your frailty and vulnerability and try to recapture the strength of your past. So it was with John as he began a modified ”farewell tour” about two years ago, but not just by visiting places and people from his past but by engaging in fun creative pursuits e.g., building an electric bicycle, or attempting feats which he was able to accomplish with a younger, stronger body e.g., doing a full body roll in a kayak. Just for the record, he built the electric bicycle but was not able to accomplish the body roll. No shame there as far as I am concerned. I was never able to do a body roll in a kayak and quite frankly, I doubt that I could build a satisfactory electric bicycle.

The story always begins when you meet John

I first met John when I was dating his sister, Anne, who I subsequently married with John’s approval, I believe. John and I always got along well, as we are close in age, have similar backgrounds and had similar experiences through our teenage years. Neither of us took a straight-line route to our final career destinations but we were diligent individuals (and John was intelligent) with good work ethics and somehow it turned out all right for each of us – except for the health issues of course. At age 69 John passed far too soon and I struggle with Parkinson’s disease. I shall refrain from elaborating on my condition any further except to say that our respective maladies presented us with similar real challenges and consequences that brought us closer together in these latter years.

Accounts of the exploits of John R. Mills and of his acumen as a storyteller have been circulating for years and his death serves now to detonate another explosion of tales – some well known, some dredged from almost dormant memory banks, and some newly uncovered and never before spoken about in public. Most of the stories are true and some are … well … mostly true.

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A few family and friends remembering John R. Mills  Photo: Stan Marshall

On the day of the gathering the stories fly fast and furiously. I overheard several different categories of stories. Some were intensely personal, almost private and whispered in hushed and reverent tones. Other stories are clearly part of the commons already and their telling marks just another occasion to be regaled to the point of belly laughs, all the while enhancing the details for the next telling. Still other conversations are ‘fact finding’ missions, gathering information and threads of details that will become stories in the future – or perhaps these conversational groupings are the crucible within which the narrative of the life of John R. Mills is being re-created, re-invented, or re-envisioned – spiced up or sanitized as necessary.

A ‘pop – up’ museum

The gathering to honour John R. Mills is well attended. Let me set the scene for you.

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Parking is at a premium at Woodgate Farm for the Celebration of John’s life  Photo: Stan Marshall

Your first footsteps onto Woodgate Farm take you to a greeting spot where a hammer and anvil await along with an invitation.

“Please take John’s hammer and send out a ring on his anvil. In the traditional farewell to Farriers and Blacksmiths, let the anvil’s peel [sic] carry your memories to him on his next adventure.”

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The added and unstated bonus is that the ring of the anvil alerts the bartender at the chuck wagon (built by John himself and pictured at the top of this post) that a Bloody Mary should be mixed and at the ready for the new arrival.

The house and garden at Woodgate Farm has been transformed into a small museum of John’s inventions, creations and activities – all artfully positioned such that the formal main event of the “ceremony/service/celebration” could take place unencumbered and the informal gathering with a veritable feast could be consumed with equal ease and comfort.

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The hammer and anvil beckons  Photo: Stan Marshall

John the Farrier had many clients (some two legged, some four legged and almost all had shoes) and his skills were in high demand. This was his business and while he was a master at it, and passionate about it, it was not his great passion. The real John the Farrier and Blacksmith loved to invent and build things – especially things that are useful, novel and fun.

Today, this ‘pop – up museum’ showcases a chuck wagon, a hovercraft (one of two he built,) an electric bicycle, a dog sled, steel throwing knives and hatchets, various pieces of leather work in progress, among other items.

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One of several photo displays  Photo: Stan Marshall

Annalea joins the party

John R. Mills was not a man who kept pace with information technology, the Internet and social media. Oh, he knew about it but he just didn’t know how to work it very well … or perhaps he didn’t want to know how to work it. Either way, it doesn’t really matter. He was never going to read my blog on line so I sent him hard copies.

I am not sure whose idea it was but it was a brilliant idea. Perhaps Chris and Annalea, John’s son and daughter, collaborated to make it happen. You see, Annalea could not make the party as she had returned to her home in Antigua after visiting her father in Kentucky. The first I noticed Annalea at the party she was being escorted on (in?) an iPad by Chris. Chris held the iPad out carefully so as to not fall or bump into anyone or anything, talking animatedly to himself or so it seemed. However, his behaviour made sense once you grasped that Skype can be a great way to share both happy and sad moments.

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John R. Mills with son Christopher and daughter Annalea  Photo: John P. Mills Date: unknown

Annalea had cleared her day and stocked her larder with the necessary rations – a bottle of wine, a wheel of Brie, another bottle of wine, some other unidentifiable snacks which may have included one of her father’s favourite, cheesies, and perhaps another bottle of wine. I have not verified the precise menu in Antigua but I surmise that it approximates the list above.

What I do know for certain is that Annalea was with us for a good portion of the day listening to the formal tributes and to the many informal stories about her father. She also spoke personally to many friends who gathered at Woodgate Farm. I think she exhausted the batteries of a number of electronic devices in the process. I have no knowledge of how long she was able to maintain the Skype connection as the party went in camera (ironically) after the formal program closed – a tactic everyone now supports even though there was mild resistance at the time. Keeping the party going does not mean it needs to be recorded for all time. Some things are best forgotten and other things are best remembered through the filters of time and experience.

Suffice to say that Annalea’s presence was a most pleasant surprise and surely was close to a record for unbroken Skyping.

The hunt and the feast

John and his wife Maddy (Dr. Madelyn Jacobs) have had a long  association with the local Hunt Club – usually referred to simply as “The Hunt” and is accorded a status equivalent to “Family.” You need to know that members of The Hunt along with other friends and neighbours are very experienced and efficient at pulling together the essentials of any gathering (including a memorial service) on extremely short notice. We literally watched the feast materialize in front of our very eyes as if spirited to us from chefs working underground.

White cloths covered the banquet serving tables laden with all manner of foods, some home cooked and some purchased, but all suitable for the occasion. Bloody Marys continued to flow from the chuck wagon. Scotch, champagne, wine and beer shared a common status as they lay waiting in strategically placed coolers around the patio and gardens.

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The feast is arriving   Photo: Stan Marshall

On this day of tribute to John R. Mills, the efficiency of the food preparation and presentation to the hungry mourners was a tribute in and of itself to the internal organizational capacity of The Hunt. From beginning to end, it was impressive to witness.

The skirl of the pipes

There are to be many poignant moments on this day. The skirl of the lone piper’s call across the paddocks drew everyone to the house garden for the main event … or at least the part of the day that had a formal program. I shall do my best to capture the flavour of the program but I am afraid that my efforts will result only in a poor facsimile of the actual events. I ask you to be indulgent as I relay my impressions.

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A lone piper calls us together  Photo: Stan Marshall

The poet farrier

John the farrier and blacksmith was a teacher and mentor to several young men, some of whom would go on to become, not surprisingly, farriers and blacksmiths with superior skills both at the forge and in the delicate relationships with large animals and their owners.

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Tools of the trade Photo: Stan Marshall

Isn’t it often the case that those who are creative in one area often excel in artistic merit in other endeavours? It certainly is the case with the young protégé Kraig who composed an emotional tribute incorporating the unmistakable rhythm of the farrier’s hammer shaping steel on the anvil in an adjacent barn; the peal evocative of the working life of the Brotherhood of the Farrier, and of the good wishes each mourner personally sent to John with mighty swings of the hammer on the anvil as s/he entered the grounds earlier that afternoon.

The words to the poem written by Kraig Milam, read for the very first time in public by John’s brother-in-law Gerald Smith and accompanied by Kraig Milam on hammer and anvil at the Celebration of Life, have been printed in the American Farrier’s Journal, November 16, 2016 in an announcement of John Mills’ passing. (See https://www.americanfarriers.com/articles/8791-kentucky-farrier-john-mills-passes-away#sthash.c7lvrCra.dpuf .) The poem is as yet untitled.

The tires crunch in the snow as he backs up to the barn,
the sun not yet up, the first stop of the day.
Warm yellow light bending around the heavy stable door,
it rolls open at his touch, the light and smell of the hay fall out.

Mare in the cross ties, her head hangs low,
he rubs her neck and she gives a long sigh.
she’s a good mare, would have been great if not for that knee
he’s kept her sound now for five years .

He lights the forge, the smell of smoke mixes with the stalls,
the mare lifts her foot, she knows this game.
A thin shoe hits the floor, the knife flashes, the nippers snap
with a practiced eye the rasp grates the hoof to the floor.

At the anvil, the hammer shapes red iron
the ringing muffled by the hay.
The hands swings the hammer, the anvil hits the shoe
the hand, the hammer, the anvil, three parts of the whole

Just one horse ... just one barn ... just one day.
How many of each, the numbers blur.
Tomorrow another horse will need him,
And he’ll swing the hammer again.

One day he'll lay down that hammer.
The anvil no longer will ring
but the farrier will live on forever,
in the memories of horses he's touched.

A long moment passes before the peal of the hammer fades into the warm Kentucky sunshine and the mourners, already struggling with their composure, hear a second poem penned by the young protégé. It is equally beautiful, equally fitting, equally poignant. Our emotional mettle is being severely tested.

A Renaissance man and a man’s man

In his opening remarks, neighbour and friend, Colonel Walter Herd (Retired,) emphatically referred to John R. Mills as a “Renaissance Man” citing his many and varied interests, talents, skills, abilities, and accomplishments, as well as his wide circle of friends drawn from across a wide spectrum of social and economic groupings. It should not surprise you that in true Renaissance fashion, John mentored Kraig (the “Poet Farrier” mentioned above,) and two other young apprentices, Albert and Brandon, in both the finer and coarser points of his chosen trade. He also helped set many others onto a better path in life, and enjoyed a special relationship with his “little brother,” Quinn.

And equally, Colonel Herd knew John to be a “man’s man.”  This designation might seem to be in contradiction to the Renaissance Man label but that is the reality – sometimes the Supreme Being doesn’t arrange character traits to be allocated in homogeneous bundles to individuals. So it was that John was at home with guns, knives,hatchets and axes. He forged and shaped serious throwing knives and axes – heavy ones that reinforced the feeling that you were holding something lethal in your hands. I doubt that there was a single grandchild, niece or nephew who ventured on the property who did not receive a lesson from John in throwing knives and axes.

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Target for throwing knives and axes Photo: Stan Marshall

It follows then that he also had no objection to hunting as a sport and he did make some forays into the hunting terrain beyond the fox hunt.

Colonel Herd also noted that John’s  experience in the mounted force of the Toronto Police Department demonstrated that John had the mental and physical toughness to face any adversarial situation.

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John doing what a man’s man does. Photo: unknown

 

Thoughts and memories

Whoever drafted the program for the Celebration of the Life of John R. Mills knew that each successive item on the program would raise the emotional quotient within the mourners exponentially, setting the stage for the final farewell.

Three members of the Mills’ and extended Mills’ family were given free rein to relay their thoughts on John’s passing and their memories of him through the years. I was privileged to join John’s son Christopher Mills and brother-in-law Gerald Smith (married to John’s sister, Wendy) to make some remarks. I found it a tough assignment to narrow my reflections to fit a tight schedule for the agenda and to give proper due to the man for whom we were all gathered. The following are my notes for trying to manage the impossible.

Notes on memories as delivered by Stan Marshall, brother-in-law

[Caveat: May not be exactly as delivered.]

It is an honour to say a few words on behalf of John’s sister Anne and our portion of the family (our daughters, Natalie, Sophie, Kristen, and Alexandra and their respective husbands and partners.)

John was Anne’s big brother and she tells me he was a pretty fine big brother … did the usual things that a big brother did with a little sister … rough housed and wrestled, teased, and told her stories … but did not throw knives as far as I am aware.

… And whenever she talks about him, it is clear to me that she witnessed the early development of an impishness and outright silliness that we all saw in the adult John R. Mills … later in life … and throughout his life.

Anne tells me that John read to her, told her stories and sang songs for her. This is not surprising. John loved a good story and he loved songs that told a story, like Big John, or maybe Stompin’ Tom Connors singing “Tillsonburg, Tillsonburg my back still aches when I hear that word” – in recognition of his tobacco picking days in Southern Ontario.

John loved a good re-hash of a true story especially one in which he was personally involved. But it had to stretch your imagination ….a story like one I just heard the other day …. And I am by no means recommending this action no matter how captivating the challenge may be …. A story about the early teenage John devising a plan to steal a steamroller and outrun the authorities….  Seems like a challenge. If you want to know how he was successful in doing exactly that, I am afraid you’ll have to find someone else to tell you the story … and the secret.

I think we all know that John was no fool. If something didn’t smell right in a story he had a way of wrinkling up his nose in a way that said “uh,uh” … and he scrunched up his face into a disbelieving look – that’s when you knew he was onto you and the gig was up.

He knew the essential difference between a story and a tale, but more importantly he knew when that difference, made a difference.

By the way, Anne has inherited that same skill and sometimes I see John’s scrunched up face of disbelief on Anne’s head, and that is when I know I am not fooling her or anyone.

Among our children Uncle John has long enjoyed legendary status as they recognized the qualities that made John R. Mills … well … John R. Mills. When asked to describe him in a word or two they use words like “silly, funny, jolly, happy, jovial, warm, creative, great personality.”

When pressed harder they volunteer, “Goofy in a way that is funny for kids and just as endearing now that I am an adult. “

One daughter says, “He reminded us that while being a grown up is hard, we can’t forget to have fun and try new things. “

I think John learned to be creative early in life and that it is hellishly fun to be creative – hellishly fun! You can see that as you look around this farmyard at the wide variety of “toys” he built using skill, knowledge, and problem solving abilities.

Both Anne and I are thrilled that their Uncle John with his personality and his creative vision has influenced our children in a positive way.

This influence was not always one of playing the “jokester.” One daughter says that she has “a cute memory” of a tender moment between John and the good Dr. Jacobs in the early days of their relationship …. a memory which our daughter now credits as instrumental to understanding that adults are permitted to show affection for one another. A good influence indeed!

However, I will leave it others to wax poetic about John in the role of “romantic lead.”

It is safe to say that the influence of John R. Mills on our collective children and indeed on Anne and me, ranges from the “goofy” e.g., hiding a rubber snake in their beds…. to the “fantastical,” the stories of his many adventures and escapades…. to the “creative,” his skills and talents as a craftsman, designer, draughtsman, artist … to the “socially adept,” his ability to connect with a wide range people from many different circumstances and stations in life … to the “sensitive and caring,” his underlying compassion for community, friends and family, no matter how thorny his exterior visage could be … to the romantic …. and back to the “silly” and “goofy” again.

I got to know John in a more in depth way at Wendy’s and Jerry’s cottage on Lake Kawawaymog in Ontario. We spent many an early morning looking out over the misty lake … ‘swapping a few lies.’ It is here that John provided inspiration to me – inspiration to hone the art of the raconteur, the storyteller – the art of knowing the small interstices within a story where the truth can be “massaged” or embellished for effect, or altered to ensure the lesson within the story is learned. I learned that I had to walk the edges of veracity carefully, because if I saw that “scrunched up disbelieving face” of John R. Mills, I had failed.

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The mist slowly lifts off Lake Kawawaymog in Ontario, Canada  Photo: Stan Marshall

It is also at Lake Kawawaymog that I began to understand John’s life and … why I fell in love with his sister … and her often scrunched up disbelieving face.

In part, it is because John and Anne share much of the same creativity and the same sense of whimsy.

Sometimes the simplest things say it all when it comes to silliness… clever silliness.

One day at the cottage, John heaved himself off the couch with great effort, almost leaving his feet as he stood up, raised his arms fully to the sky in his best victory pose, announcing in his best sportscaster’s voice, “He really stuck that landing,” as if awaiting huge applause from the crowd.

Silly? Yes.

Clever? Yes.

Words that will be repeated in our home forever? Yes.

Each of us here today will have similar, simple memories which will forever form our own individual gateway into the complex life of a husband, father, brother, uncle, and friend – John R. Mills.

 He is loved and missed

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Canoes pass in the early morning mist on Lake Kawawaymog  Photo: Stan Marshall

Speech by Christopher Mills, Son of John R. Mills

Christopher (Chris) has a wide variety of memories of his father but the ones that stick with him are the ones which highlight John R’s sense of humour – the funny stories, the desire to do things that are a little off beat. In this respect the apple has not fallen far from the tree and Chris is funny in a quirky sort of way himself. I often refer to Chris as “the funniest man on the planet” and he replies immodestly, “you mean the funniest man in the universe.” Chris has been on the edges of some very funny and creative endeavours and for a while was in a band that toured extensively in Europe. He can be spotted from time to time as an extra in one of Canada’s favourite TV shows, Murdock Mysteries.

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John and Christopher all clear for a hover over Lake Kawawaymog  Photo: Stan Marshall

Chris understands that the imperative in breaking new ground in any field is to take some chances. This is not inconsistent with his father’s approach to life I believe it is this trait that led Chris to be quite provocative in his address to the gathered mourners – particularly about the human half of the clientele of his father’s farrier business. The safe thing would be to say something like, “My father’s recipe for success was one part skill, one part personality, and one part business acumen.” Of course mixing this cocktail is not as simple as pouring scotch over ice  and adding a splash of water – something John had also mastered. In any case, Chris did not do the safe thing, he just laid it out there by revealing that in the latter years, in order to be a client of his dad’s farrier business, the owner must be notable in some way, have a quirky personality, be intelligent and inquisitive, or be a reservoir of inside information. It is hard to say what characteristic would tip the scales in your favour but you most certainly could not be average or dull. In fact, if you were not a client then you were just “boring.”

There was laughter at this point – but was it genuine funny laughter? Nervous laughter? Snorts of indignation? Embarrassed chuckles? Small breathy wry smiles? Who knows, but Chris’ provocation did set people to remembering John in multi-dimensional terms.  There was nothing one-dimensional about John R. Mills and there is nothing one-dimensional about his son, Chris Mills.

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Just some of the animals in John’s clientele?  Photo: Stan Marshall

Chris’ comments got me thinking about the time I accompanied John on his rounds and I had a chance to observe John at work. I think that Chris has not only hit the gathered grievers over the head with his observation that if you were no longer interesting enough, John did not make any extra effort to keep you as client, but he has hit the nail on the head in understanding the role of farrier. You see, John in many ways was a ‘curmudgeon’, which is just an interesting word for an ill-tempered crusty old man. Oh, he wasn’t a curmudgeon all the time, just when he wanted to be and he cultivated his image as that of a “lovable curmudgeon.” Being both lovable and a curmudgeon allowed him to ferret out the most fascinating information about people and to relay that information in story form to others. OK, this may just be a fancy way to say that he was a ‘gossip.’ Oh my, ‘gossip’ is such an ugly word in this context and many take it to mean, “spreading untrue rumours” but this definition is not one that describes John. In John’s case it is more accurate to say that a ‘gossip’ is someone who likes to talk about the private lives of others.

Remember earlier I said that the safe thing for Chris to say would be that the recipe for John’s success as a farrier included one part business acumen. Well, the farrier is a natural communication conduit, carrying information from client to client as he makes his rounds. For John to be successful, he had to use his business acumen (ability to understand and reason) to decide what information to pass on, when to pass it on, and to whom he should pass it. This communication of vetted information from reliable sources, especially in the days before social media, provided a valuable service to the community and accorded the farrier a certain amount of power and influence. It is hardly surprising then that the more interesting and fascinating the private lives of the owners, the better it was for business and the more interesting and often powerful his position became. In other words, no one should be shocked that John chose his clients using criteria that had nothing to do with the animals. He was just taking care of business.

Speech by Gerald Smith, Brother-in-law and Elder Statesman

Gerald (Jerry) Smith is married to John’s sister, Wendy, and that means he is one of the favourite brothers-in-law. Jerry is known to be worldly, sophisticated, educated, articulate, and erudite not to mention politically astute, community conscious, a friend and patron of the arts, a loving husband, father (Kerri) and stepfather (John E.), and respected by all. By virtue of these qualities and the fact that on his next birthday he will turn the page on three-quarters of a century, Jerry is most deserving of the honourific title of “Elder Statesman of the Extended Mills’ Family” (ESEMF).

The following paragraphs are the notes from Jerry on his remarks.

Three themes:

Being first born and only son (you, me and Christopher) [includes John R. Mills, Gerald Smith, Stan Marshall and Christopher Mills] shaped us when it comes to responsibility, caring and nurturing, patience . . .

John R. was more into the hunt than the kill; notwithstanding the boar shot with bow/arrow, or the snake skin on the wall, it was more about solving problems, figuring things out – witness the 2 hovercraft, recumbent (electric) bicycle, dog sled; witness cottage projects including solar power, 5.0 hp pump to get water from the lake, hot water shower system, learning to execute Eskimo roll in kayak AND the 7 hour boat!

Finally, our favoured toast – after scotch and before a great meal – ” family, friends, food!”

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Rowboat built for Wendy. Photo: Stan Marshall

Jerry captured the moment succinctly as usual – although at peril of disagreeing with the Honourable Elder Statesman, I don’t believe that John R. successfully executed the kayak rolI – at least not in the last five years. But … that is probably a debate, a question, and a story that will be told and re-told, hashed and re-hashed in the coming years. I bet that at this very moment there are some who would be willing to place a small wager that they personally witnessed John R. coming up out of the water in full body roll pose with the kayak, his round face spluttering, but smiling! Do I have any takers?

The horn and the pipes

The Hunt Club acts as a large (functional) family on occasions like this one. They have the leadership and organizational skills to muster their membership to coordinate with family and friends to meet the needs of any member of this ‘Hunt family’. Food and drink appear on cue; memorabilia, artifacts and inventions are displayed to great effect in the house and around the farm yard; the agenda is put together with care and its execution is seamless with other parts of the day; and when it is all over and the night has swallowed the last of the revellers … er mourners, the visible components of the day have disappeared and if one looks carefully around the farm many things including the hovercraft can be seen back in their assigned storage places. All food, dishes, warming plates, and heaters have disappeared. It brings to mind the old adage “Everything has a place and everything in its place.”

Before our emotions had fully settled following the poems penned by Kraig the farrier, the sob filled silence was broken by a long and mournful tone blown on the hunting horn by Alf Caldwell (LRH Huntsman, MFH*.) At the end of the wail, Alf calls out with a catch in his voice “Gone hhh oo   mmme” – traditionally signifying disappointment at the end of a long day’s hunt, but today poignantly marking the passing of John R. Mills.

Tears, sobs and sniffles ensue.

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Children love to play on the dog sled   Photo: Stan Marshall

In a tree’s shadow, slightly off to the side of the gathering, a lone piper stands just behind three of John’s creations (the electric bicycle, the hovercraft, and the dog sled) silently filling her pipes’ bag with air in preparation for a rendition of Amazing Grace, the immensely popular Christian hymn written by John Newton 242 years ago!

Amazing Grace is almost the perfect complement to the readings and message delivered earlier by the Rev. Joey Pusatari. The hymn seems chosen deliberately for its message that “forgiveness and redemption are possible regardless of sins committed and that the soul can be delivered from despair through the mercy of God.” This message resonates with hundreds of millions of people worldwide and it is no less resonant in Kentucky. The promise that the soul of John R. Mills will live on forever as a result his good works and kind heart, and that John, not a known church-goer, may indeed be granted salvation at this late hour, is greeted with tears of joy, and the only dry eyes are those fixed steadfastly to blades of grass on the ground.

The piper expertly transitions into a rendition of My Old Kentucky Home ** which signals that the celebration of John R. Mills’ life and accomplishments is to continue. I confess that the rush to the bar for more champagne (or scotch in my case) distracted me from noticing whether the piper expertly uses the last of the air in the pipes’ bag without the drones continuing past the end. I assume nothing less.

Reportage ends

To my knowledge there is no reportage of any behaviour, word or deed, subsequent to this moment as the gathering goes “in camera” and reporters and journalists are banned.

There is nothing left but for the party (for it is truly a party now) to continue in earnest as the breadth and depth of grieving has affirmed the first irrefutable fact that John R. Mills is dead.

It is only fitting that there is already a rumour that some stories (embellished or not, who knows?) from the “in camera” party have already leaked out, confirming the second irrefutable fact that John R. Mills is alive.

Time has a way of preserving the richness of the past so that great storytellers may convey it in the future. The richness that is John R. Mills lives on.


*LRH stands for Long Run Hounds which is the the second oldest recognized hunt club in Kentucky established in 1961. MFH stands for Master of Fox Hounds and that individual is in command of the hunt in the fields and in the kennels. Joseph “Alf” Caldwell has been the MFH for LRH since 2011.

** John R. Mills was born in Toronto, Canada and he remained a Canadian all his life. Kentucky though was his adopted home for approximately 30 years. He carried a deep love for both.

APPENDIX

 Obituary

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John Robert Mills
1947 – 2016

Born October 9, 1947 to John Porter and Joan Whyte (nee Ross) Mills in Toronto, Canada. Stepson of Frances Mills. John died at home on Tuesday, November 8, 2016 surrounded by his “guys”, just as he wished.

Survived by his beloved wife, Dr. Madelyn Jacobs (nee Jackson) and his two children; Christopher David of Toronto and Annalea Juliet (Chris Harris) of Antigua, and his grandson and the light of his life, Marlin Mills Harris.

Loved by his sisters, Wendy Joan Smith (Gerald) of Toronto and Anne Frances Marshall (Stanley) of Ottawa, Canada, as well as nephew John Descheneau and nieces, Natalie and Sophie Malek, Kerridwen Smith and Kristen and Alexandra Marshall and his extended family, colleagues and friends.

An avid member of the Long Run Hunt Club, he truly valued those hunting friendships and shared memories. He spoke so highly and lovingly of Jeff and Ellen and Grace, Walter and Anne, Lisa and Tim, Marilyn and Uri, Jim Marcucci, Bruce and Shawna and Karen and Bill and Toody and Bruce. Margaret and Quinn held a special place in his heart. He deeply missed his friends David and Carroll. He loved his time cruising in his hovercraft with Hover Dave and enjoyed seeing the rivers of Kentucky and the northern Ontario lakes. He was a skilled farrier and teacher and master problem solver. He took great pride in the skills of Kraig, Albert and Brandon. Deeply intelligent, quirky and feisty, he will be missed.

The family would like to thank Dr. Dale Haller for his outstanding care and the wonderful nursing provided by his trio of Brianna, Dawn and Faith.

In lieu of flowers, the family would appreciate donations in John’s name to Big Brothers Big Sisters of Kentuckiana [http://www.bgckyana.org/]

Published in The Courier-Journal on Nov. 13, 2016 http://www.legacy.com/guestbooks/louisville/john-robert-mills-condolences/182484454?cid=full

© Stan Marshall (The PD Gardener)

In the Parkinson’s Garden: Ruminations on Love, Intimacy and Sex

In the Parkinson’s Garden: Ruminations on Love, Intimacy and Sex

Preface

It has been quite some time since my last post. I assure you that I have not been idle, just facing a number of challenges which have required close and careful attention. I have been relearning how to walk after losing this capacity quite suddenly over a period of 4 – 5 days in January 2016. As part of this challenge I had a total replacement of my left knee in late August. I am now a little over two months post surgery and have completed my knee rehabilitation physiotherapy program. I have some things to say about the surgery and the rehab as well as the frustration of losing all capacity to walk and not finding a suitable explanation as to why this should happen. However these are topics for future posts.

The biggest reason for the delay, or should I say hesitancy in making my thoughts public, is the sensitive and tricky nature of the subject matter. While the topic has been bouncing around in my mind for quite some time, personal thoughts about sex, love and intimacy are not something that spills onto the page without some considerable thought – especially because my wife and lover will read it with a most critical eye, and rightfully so (see Note 1.)

OK, you might well ask: “Who in their right mind wants to read a blog post on love, sex, and intimacy through the lens of a 67-year-old male Person with Parkinson’s (PwP.) Already I can hear bleats of protest, if not indignation and outrage, ranging from: “Oh God, No!” “Cover your eyes and ears,” “Spare us!” Yikes!” “Lock up your children,” ”Gross,” “You deviant,” “You pervert” and worse. If these represent the tenor of the thoughts going through your mind, then I sincerely hope that I do not live up (more precisely, down) to your expectations.

To be honest, I do have some reservations about embarking on this journey, mostly because my thoughts on intimacy, sex and love have a much greater probability of being misunderstood than my thoughts on many other topics. Still, I tell myself that I am being honest in my approach and it has never been my intention to write a “tell all story” or an exposé on the sex life of a PwP. Those of you who are expecting a titillating account of sexual encounters (creepy, romantic, or both) or have a prurient interest in the sexual appetites, activities and proclivities of those who suffer from chronic, debilitating disease and find ways to overcome obstacles to intimacy and sexual satisfaction, can look elsewhere.

When I started this post, I wanted to write about how sex, love and intimacy are just as important to Persons with Parkinson’s as they are for so-called “normal” people. More precisely, I wanted to write about a “normal guy with Parkinson’s” who

  • Has dopamine deprivation such that his physiological and the neurological systems are not playing well together;
  • Has so many motor and non-motor symptoms of Parkinson’s that his personality, his essential self, disappears into the visual busyness that is Parkinson’s;
  • Has difficulty making his views heard and understood outside of a very small circle of friends and family;
  • Desperately wants to deny that the disease is not only advancing but will eventually render him incapable of activities of daily living and totally dependent on others for care;
  • Wants to live and feel that complex of human feelings and behaviours we have come to associate with intimacy, love and sex.

Let’s be clear. I am quite sure that any talents I possess as a writer or a story teller will not be adequate to the task of explaining the permutations and combinations of love, sex and intimacy along with the almost infinite number of accompanying human emotions. Nevertheless, I shall do my best to begin this conversation in the only way I know how – using a blend of personal experience, critical self-reflection, knowledge (lived and acquired) , and informed awareness of the issues.

[Please note that I have not included any analyses of the tremendous love and support I receive from my family and friends as it is of a different order of love and intimacy.  If anything they should feel relieved by this omission rather than slighted.]

Two particular unrelated events, one hundred years apart, have been instrumental in the formation of my views on intimacy, love and sex, and on my decision to voice them in a public forum.

So, let’s get started shall we?

Eloping: Guns Blazing?

 [Love was smouldering in the gardens and orchards ….]

What better place to begin a search for true love than with a story about true love. The time is 1915; the place is Deerwood – a small Manitoba farming community on the rail line between Altamont and Miami; and the key protagonists are my paternal grandmother, the auburn-haired Maud Moorhouse, her father Henry Moorhouse, and my grandfather, Robert Egerton Marshall, neighbouring farmer and “ne’er do well.”

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Map showing the proximity of the Marshall and Moorhouse farms

I do not recall my grandparents being wildly in love but obviously there was something smouldering on November 23, 1915 when they evaded the pursuit of the bride’s father to elope and marry in Winnipeg, Manitoba. The story of the elopement has always been told in our family with a certain amount of humour – a story about how Maud (20 years old) and “Old” Bob (15 years her senior) had outfoxed Maud’s father and run off to Winnipeg together. It was pretty racy stuff for rural Manitoba in 1915.

In an undated and unpublished manuscript, Not Because of Beginnings, Dr. H. H. Marshall, the first-born child of the eloping couple outlines the facts of the matter.

“On November 23, 1915, Bob drove his horses the long roundabout way to approach the Moorhouse farm from the Deerwood side, which was mostly hidden from view from the house. A deep ravine crossed the south part of the Moorhouse farm and between the Marshall farm and Deerwood. There were no approaches for three miles to the east but the west approaches could all be seen. While her father’s attention was diverted, Maud walked down through the wooded ravine pasture to meet Bob. They then drove to the railway station at Deerwood, where he had bought tickets earlier. The train was on time and they were on it. Father [Henry Moorhouse] was furious when he learned what was happening but he had been delayed some. He took his good team of horses and a shotgun to follow the elopers but he arrived at the station after the train had left. He tried to follow but was left far behind. Bob and Maud traveled to Winnipeg to be married by Rev. Ridd, a minister who had served at Miami. Henry was forced to accept the situation, although he certainly would have fumed and stormed for some time.”

The story has been told and retold many times over the years (and will continue to be) and each telling will be as understated or as overstated as the teller wishes it to be. Undoubtedly, many of the accounts will contain embellishment in keeping with the storyteller’s character and his/her skills at weaving a good tale. The fun may have been in outsmarting father Moorhouse who would be painted as a gruff old bugger with no love for an underachieving neighbouring farmer almost as old as himself. It could be accompanied with appropriate narrative describing the farming economy of the day and Marshall’s poor prospects coinciding with his decidedly very poor agricultural land, barely suitable for pasture, as the backdrop to Marshall’s desire to spend most of his time on horticulture and fruit growing rather than traditional farming. I have heard some say that he was a “damn poor farmer.” The punch line would be that Marshall’s inclinations were correct and his observations that this land would produce excellent produce led him and Maud to some notoriety as innovators in fruit and vegetable growing and other horticultural pursuits. Not to mention that their genes and the environment they created produced their first-born son Henry who would blaze his own path as an innovator in horticulture. The irony would not be missed in the fact that Henry Marshall was named after his maternal grandfather, and young Henry would soften the gruff old man and become Moorhouse’s (only) favourite among the five grandsons Bob and Maud gave him.

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Maud and Bob Marshall with a selection of their produce. Photo: unknown

Or the storyteller might chose to elaborate on the secretive courtship, the ruse, the deception, the chase and the sweet victory of true love in Winnipeg. The collusion and collaboration by those in the know to ensure that the lovers were able to escape the disapproving father required some intricate maneuvering given the communications of the day. The lovers would be trying to leave unobtrusively. Upon learning of the plan Old Moorhouse would run his horses to the sweat trying to beat the lovers to the train, falling just short; guns blazing as the train sped out of sight.

The best stories are ones that are true for the most part but leave the storyteller some leeway to work magic at the edges of the veracity. What is the real story behind the elopement of Bob Marshall and Maud Moorhouse? Who pursued whom before old man Moorhouse pursued them both? Was Maud’s sister, Ethel, a co-conspirator seeing this as her way to avenge her father’s firm  refusal to approve her own potential marriage? Who knows for certain?  I hope I have the opportunity someday to return to these events so important to my family’s history.

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Henry Moorhouse and daughter Ethel c. 1927. Photo courtesy of Western Canadian  Pictorial Index, University of Winnipeg Archives

For now, I can only say with some certainty that there was love smouldering in my family’s gardens and orchards in those years and that realization is part of the impetus for me to reflect on love, sex and intimacy from the warmth and love generated within the confines of our present day Parkinson’s garden.

Okay, that is the first reason for writing this particular blog posting. As always, it is best not to charge ahead too quickly without understanding all of the antecedent reasons for proceeding.

Wife/Caregiver Takes a Lover

[The honourable thing may be to face the music and end the charade; just don’t expect accolades or applause.]

Some months ago I read an article that I can’t seem to get out of my mind. In Australia the wife of a Person with Parkinson’s, revealed through a Christmas missive to friends and family in 2015 that she had taken a lover while still living with, and caring for, her husband.

The Australian Broadcasting Corporation (ABC.net.au 2016) aired a documentary called The Three of Us: Carer, Husband and Lover which is about … well … about the three of them. The short story is this: Damian, Elaine’s husband, has early onset Parkinson’s and frontotemporal lobe dementia; Elaine, Damian’s wife and ‘carer,’ takes a lover, Trevor; Trevor becomes Damian’s friend, and lives a few blocks away from Elaine and Damian. Elaine and Trevor, it seems, are fine with this arrangement and she reveals all to the world in a Christmas letter – a commonly accepted vehicle for disseminating information – joyful and sorrowful – throughout the Christian world. This function continues even as social media gallops ahead of the Christmas letter curve primarily because the Christmas letter can disguise itself and hitchhike within the links and attachments of social media.

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Christmas letters bring joy and sorrow

I am not sure what to say about Elaine’s letter. Is it a joyful one because Elaine has found happiness and a new love? Is it sorrowful because the marriage between Elaine and Damian has broken down and Elaine has moved intimacy and “romantic love” out … and into another relationship? Is it sorrowful because Parkinson’s and dementia have robbed Elaine and Damian of the opportunity to maintain a ‘real’ marriage (“‘til death do us part”,) with long-term physical and emotional commitment including sex and intimacy? Is it joyful because Elaine has found the wherewithal to carry on as a ‘carer’ fulfilling another commitment in the marriage vows (”in sickness and health”) by providing tender loving care? Is it joyful that Damian and Trevor have established a friendship? Is it joyful for children and/or others in the family who are now freed from the worries of how to provide care for Damian? Or is that sad too?

Interestingly, the hit Netflix series Grace and Frankie has weighed in on the same issue using Alzheimer’s as the disruptive scenario. It is not surprising that mainstream entertainment is latching onto these moral issues as important topics for viewers. After all, millions of people worldwide face this dilemma every day. Grace meets a boyfriend (Phil) from her past. They each have a desire for this relationship to be rekindled when Grace discovers that Phil is still married to Elaine (ironically) who suffers from Alzheimer’s and drifts in and out of reality. Of course, this immediately raises the moral question of whether Grace should date and become a lover to a man still married to, and is caregiver for, his wife – albeit a wife who no longer has her full faculties. Spoiler alert: Grace decides initially that she cannot continue on a path to reunite with the old flame under these circumstances. In a later episode she reconsiders and the relationship continues with a steamy hotel meeting that is interrupted by a call notifying Phil that Elaine is missing. The realities of life with someone with Alzheimer’s hits home and the moral question lays there like ‘a turd on the rug’ as a former colleague of mine used to say. The last I remember Grace is calling the whole thing off … or not.

Wait! The Patient Has a View Too

[Hey! I am inside here, you know.]

Let’s return to the Australian Broadcast Corporation documentary for a minute. Journalist Kirsti Melville takes great care to say that she didn’t expect the husband, Damian, to have a coherent and cogent opinion about the relationship between Elaine and Trevor. However, as the making of the documentary progresses she realized that she was wrong on this score and that she should ask Damian for his views, as he deserved that much respect at least. I personally think that it should have been more than an afterthought but I am relieved that she came to see Damian as a human being affected both by the process and the decision. Quite eloquently, the youngest son expressed his wish that his dad not be “reduced to a list of symptoms,” and Melville seems to have taken that request to heart.

For his part, Damian does seem aware that his relationship with Elaine has changed and that he and Elaine each have a different relationship with Trevor. Damian seems to accept this reality with equanimity in the same way he accepts that his health is deteriorating, that he needs assistance and that life is now better under this new reality than it was previously. Do I sense a hint of relief on everyone’s part here? What if Damian had rejected the new arrangement? Melville concludes the documentary by saying that this is a “gorgeous story.”

As a sentient human being myself, albeit one that has Parkinson’s, the enormity of the sadness I feel whenever I consider the possibility that Anne (my wife and lover) and I would have a relationship other than the one we currently enjoy is so massive that it sends cold turbulence through my emotional self; an icy chill freezes all rational perspective; a numbness deadens sensation in my lips, fingers and hands; and a deafening silence fills a space previously filled with words unnecessary to be said aloud.

It is to be unthinkable, yet it is almost a certainty that Parkinson’s, Lewy Body dementia, old age and worn out body parts, or some combination of those conditions, will upset the apple cart. I am not in the least suggesting infidelity. Rather, I am admitting that changes in physical and mental health bring with them some new rules, and even if a relationship remains emotionally true and intact, it does not remain identical through each moment of time as each year unsympathetically exposes more warts and frailties.

Am I allowed to be sad about these eventualities creeping ever closer into our foreseeable future? Yes, of course. Is Anne allowed to be sad? Yes, of course. But let’s be clear; being sad about the probability of something happening in the indeterminate future is a poor way to live everyday life. It is far better to rejoice in the pleasure of the moment. Uh, oh. Is that too hedonistic? Not for this PwP. I have a pretty good idea about my long-term prognosis and I happily accept any burden hedonism might impose in the short term.

I apologize but unwittingly, I have strayed a little from the main point. Whether we are allowed to be, or should be, sad is not the question. The question is: Are we allowed to move on when (if) a significant change occurs in the conditions within which a relationship lives? That question is not so easy to answer.

On the basis of what you have read so far I wouldn’t blame you for concluding that I think Elaine in Australia is wrong to have taken a lover while caring for her Parkinson’s husband. But to be truthful, I am not sure. What I do know is that I am not qualified to make that judgement. However what I am qualified to do is to ensure that the voice of the person being cared for (the patient, PwP, disabled, person with dementia) is heard and not dismissed as being something other than compos mentis.

No Fighter, Including Muhammad Ali, Ever Went into the Ring Unprepared

[Is thinking too much about bad things a bad thing, or is it just that thinking too much is a bad thing?]

The longer you live with Parkinson’s the more you accept that it is a progressively degenerative disease. It will advance in a predictably unpredictable manner through stages – sometimes slowly and sometimes quickly.  You will feel each new symptom, or worsening of old ones, at the very moment that it occurs. You will choose either to ignore or deny the change but no matter how much you put your head in the sand it will wear you down until you accept the change as the “new normal.”  You are forced to admit grudgingly that Parkinson’s marches on as inevitably and steadfastly as life itself.  You come to understand that Parkinson’s travels incognito for years before it merges with the final steps of life’s journey to reach death, a destination it could not locate on its own.

Oh, there will be “cheerleaders” exhorting you to fight on, to resist, to beat the odds, to delay (or defeat) the advance of Parkinson’s. We all need encouragement to keep active – exercise, cycle, walk, run, swim, box, dance, do physiotherapy, do Pilates, do yoga, sing, play music, write, paint, garden, or do any other activity to keep our minds sharp and our bodies in fine fettle. In combination with diet, medical devices, pharmaceuticals (old and new) medical procedures and surgeries such as DBS (deep brain stimulation) or duodopa intestinal pumps and transdermal delivery systems, physical activity gains a better quality of life for us, over a longer period of time. The problem is: I know that, at the present time at least, I cannot outlive Parkinson’s anymore than I can outlive death, no matter how many cheerleaders there are on the sidelines.

There is a maxim, “We do not die from Parkinson’s but we will die with it” which implies that Parkinson’s is not a cause of death.  While it is largely true, it is not the whole of the matter. There are many symptoms of Parkinson’s which appear to aid and abet death at the very least. For example, The Michael J. Fox Foundation claims “the leading cause of death in Parkinson’s is aspiration pneumonia due to swallowing disorders.”  In addition to dysphagia we could add depression and loss of balance as other factors leading to death. You may have died of a brain injury when your head hit the ground, but the ‘real’ cause of death was that you lost your balance and fell because you have Parkinson’s.

Why does the maxim “We do not die from Parkinson’s but we will die with it” bother me? Aside from the fact that there is a question as to its veracity, it effectively minimizes the onerous path that Parkinson’s can take you along before you die. There is no cure for Parkinson’s, just as there is no cure for death, and I can expect that my body and/or mind will decline significantly along the way because my symptoms will intensify and multiply. Having Parkinson’s places your life at a point closer to death than it would be otherwise. In other words, you have a  shorter life expectancy if you have Parkinson’s.

Many of you will feel that I am being defeatist or depressing (if not depressed.) You would be wrong. If you want to give it the good fight you have to know what you are up against. No fighter, including Muhammad Ali, ever went into the ring unprepared. I am telling you though, that the mental preparation necessary to face the probability of altered personal and intimate relationships is the toughest preparation I have ever had to do, maybe even tougher than facing the physical demands of Parkinson’s itself. The energy and focus it has taken to write this blog post is but a small part of this preparation. There are no blueprints or manuals. The challenges are different for each individual and vary according to stage of disease development.

Of course, many PwP turn to clerics armed with Faith and religious texts or counsellors armed with knowledge from social – psychological studies to provide the  strength to buttress yourself against the physical, social, mental and spiritual turmoil you will face. Choose the approach (or more than one) with which you will be most comfortable as you travel on your journey: Yoga, meditation, Pilates, faith, spirituality, religion, love of family, exercise, or any other of dozens of choices, will give you peace and serenity.

I suspect that only the strongest of relationships are long-term survivors of a Parkinson’s diagnosis. After diagnosis it is not long before work colleagues and other friends drift away but they may well have done so anyway, after the workplace connection is broken by long term disability or retirement.   Outside of personal intimate relationships, the toughest loss to deal with is the loss of “close” friends who will exclude you because … I am not sure why. Perhaps, your interests and/or lifestyles diverge or they may buy into the belief that Parkinson’s is associated with cognitive decline. In the wake of such losses, I comfort myself with the knowledge that very few people keep good friends for a lifetime even in the most ideal circumstances. Still, these are not the relationships with which I am primarily concerned as my thoughts are focussed on relationships involving love, sex and intimacy.

What Does Baseball Have To Do With It?

[Whatever gave me the notion that people would continue to play fair when they fell “out of love” is beyond me.]

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The Major leagues were a long way from our little ball field. Photo: S. Marshall 2015

It might seem trivial at first but when I was a lad of about eight years old, Roy Campanella, star catcher of Major League Baseball’s Brooklyn Dodgers (1948 -1958) was one of my heroes. Campanella broke into the major leagues in 1948, one year after Jackie Robinson broke the colour barrier. Unfortunately, Campanella’s career was cut short by an automobile accident that left him a paraplegic. I thirsted for knowledge about Campanella back in those days but we did not own a television and radio reporting was sporadic in rural areas, although my little transistor radio could pick up faraway ball games on crisp late summer and early autumn evenings after local stations reduced their wattage. Moreover, there was no library in Altamont, Manitoba so my father arranged that I could have borrowing privileges with the University of Manitoba Extension Library from which I could order books to be sent by mail. I recall devouring The Roy Campanella Story by Milton J. Shapiro (1958).

Then about a decade ago I read something about the breakdown of Campanella’s relationship with his second wife that profoundly saddened me. The exact sentence is still fresh in my mind. “Campanella’s wife Ruthie, unable to cope with the loss of physical intimacy imposed by the accident, left him” (see Note 2.)  In other accounts I read that she would leave their home in the evenings flauntingly seeking male companionship. For some reason this repulsed me greatly and even though I knew that Campanella had his own share of infidelities over the years, I had great sympathy for him. I am not going to go into a long discourse on this matter other than to say that I was repulsed by what I perceived as a deliberate and flagrant desire on Ruthie’s part to hurt Campanella, a man who could neither fend for himself nor defend himself. I guess this is a variation of the old idiom “don’t kick someone when they are down” and appeals to some sense of “fair play” – that people should not play “dirty.” Is this an accurate interpretation? Probably not and it probably doesn’t really matter to most people, but that is how I felt when my brain first processed this information.

And Then Ruby’s Feelings Must Be Considered

[this song will not end with Ruby and her man getting back together.]

The perils of love, intimacy and sex as experienced by Ruthie and Roy Campanella was brought sharply back to my memory in the song, Ruby Don’t Take Your Love to Town written by Mel Tillis and originally recorded by Johnny Darrell in 1967. Waylon Jennings, Roger Miller, George Jones and many others have covered the song but it is Kenny Rogers’ release in 1969 that is accepted as the best version and a blockbuster hit. The original lyrics were about a veteran of the Korean War and his wife, but in the late 1960s people widely believed it to be about the Vietnam War and Rogers’ release of the song was very controversial at the time.

I personally don’t associate the song with either Korea or Vietnam but when I hear those mournful lyrics

It’s hard to love a man whose
Legs are bent and paralyzed
And the wants and the needs of
A woman your age, Ruby, I realize

I cannot help but think of Roy Campanella. Of course Tillis’ lyrics, written for public entertainment and mass consumption, are among the best in a long tradition of ‘hurtin’ country and western music, a mixture of everything good and bad about love and deception. In the end, even the murder of the offending wife is contemplated but that deed cannot be fulfilled leaving … what? … a disabled man helpless; Ruby free to do what she pleases; and a clear indication that this song will not end with Ruby and her man getting back together.

And if I could move, I’d get my gun
And put her in the ground
Oh, Ruby, don’t take your love to town
….
Oh, Ruby, for God’s sake, turn around

In any case, about a year ago I heard Ruby Don’t Take Your Love to Town and I remarked to some friends that I thought it was a terribly sad song. I relayed my understanding of the situation faced by Ruthie Campanella when Roy was left paralyzed and how she couldn’t cope with the loss of intimacy and sought to fulfill those desires elsewhere. Perhaps I have been too quick to criticize Ruthie (and Ruby in the song) because my comments were met with a sharp retort from a female friend, “For God’s sake, get over it! Why shouldn’t she find someone else?”

OK then. There we have it. Or, do we?

Romantic Love

[Unlikely as you may think it to be, some lads hunger for a tender kiss.]

When and where do boys first become aware of romantic love? I doubt if it is when they begin to read the sports pages or gossip columnist stories about sports heroes such as Roy Campanella or in the top 10 pop hits list of the entertainment section. I am convinced it happens much earlier but be relieved that I am not going to go into a psychological exegesis about memories of being birthed or suckling at my mother’s breast as my first formative moment(s). [I am not sure that I did suckle at her breast for any extended time, as breastfeeding was not in vogue during the 1940s and 1950s in Canada.]

But if birthing and breastfeeding were defining moments, I don’t recall it that way – in fact, I don’t recall that part at all. Rather, my first memory of such a thing called love between two humans – a love that was not a familial love but a love that encompassed intimacy – was the love my Uncle Henry and Aunt Eva had for each other, at least as I witnessed it as a child. Yes, this is the same Henry, first-born child of Robert and Maud Marshall after they eloped in 1915. In retrospect I am convinced that my aunt and uncle had a tenderness and a tangible common understanding of commitment that exceeded the norm for most other relationships – I say this confidently as I reflect on my own 60 plus years of study as a participant observer of human behaviour (non-scientific I grant you but observational data points nonetheless.)

As this is not a “tell all” blog post (it is hardly even a “tell something” post) don’t expect me to go into great intimate detail of my uncle’s and aunt’s lives spent in love, other than to say that there is something about a chance observation of a noon hour kiss on the lips, a genuine tender kiss, neither a peck nor a slobbering, groping tonguing, that left this small boy entranced, longing to know the secret to such an uninhibited demonstration of love. I witnessed this portrayal of affection many times in my formative years when my uncle would arrive home for lunch, having spent the morning in the gardens and greenhouses of the Brandon Experimental Farm. On occasion they were a little more demonstrative and disappeared into their bedroom for some cuddle time. I spent a few weeks each summer at the Experimental Farm with my cousins and the expression of genuine affection between my aunt and uncle never changed over that time. Low key, long term, lasting, love. What I witnessed was neither titillating nor tawdry but it was a powerful introduction to what I believe is the most powerful of human feelings.

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Henry and Eva Marshall Photo credit: unknown

It seems that my remembrances of my aunt’s full bodied gentleness, my uncle’s strong gardening hands, and their lips caressing in a short soft noon time kiss create the ideal segue for me to talk about love in our present day garden.

My Love Affair With Roses

[Thorny as they may be, it is impossible to plant a rose without giving it a hug. See Note 3]

Some might say that the men (and some of the women) in my family loved their gardens and orchards more than they loved their women (or men.) I like to think, somewhat selfishly I suppose, that the quantum of love is equal in each case and this is perfectly in order as long as the love for your human lover is of a magnitude required to sustain the relationship over a lifetime.

This history of love for gardens and orchards in my family may go some distance to explaining why I seem to be having a love affair with roses this past year. It is not entirely surprising that roses should seduce me now. Oh, we have always grown a few roses, mainly those developed by my uncle, Henry Marshall, who was instrumental in developing the Parkland series of roses at the Morden Research Station (see Note 4) but to say that I was crazy in love with roses before this year would be incorrect.

There is no doubt about it; this year is different. I now have a full-blown infatuation, or dare I say, fixation, or maybe obsession, with some specific species and varieties. Under normal circumstances one might interpret such a state of mind as being one of great joy but in the sanctuary of my garden, alone with my innermost reflective thoughts, the joy of being so intimately close to a beautiful rose that her love bites are evident in the sanguineous contrails on my arms, is often tinged with the sadness of knowing that my desires are partly the last ditch efforts of this gardener (the PD Gardener) to experience as completely as possible one of the most sought after perfections of love – roses – before he is no longer capable of the husbandry required for them to flourish and the mental acuity required to bask in the romance and intimacy that they proffer.

Not surprisingly I guess, I have been reflecting mightily upon life and love, especially life and love in a world with Parkinson’s disease, my constant and most abusive companion.   I have come to look to the rose, iconic as it is of love, to override the ravages of Parkinson’s, to perfume the ether for lovers whose wings take them to those lofty heights, to provide the beauty that is in the eye of the beholder. I desire desperately to be in that select category of “lovers” known only to poets, song writers and composers – you know those romantics who make you want to hurl your stomach contents into the shrubbery and who, at the very same time, make your insides come alive with butterflies of anticipation as you sense the presence of a new lover. [The difference between literary excellence and soap opera cheesiness gets a little muddied sometimes.]

It is small wonder then that this is the year of my love affair with roses. For this year I crave reassurance in all matters of love, especially as the staccato ‘rat-a-tat-tat” and “thrum thrum” of the advancing drums of Parkinson’s often obscures mellow intimate tones, and may even cause them to flee. The Parkinson’s drum corps is relentless in exhorting the destruction of the final few neurons capable of dopamine production. It has been a difficult year with many health challenges nipping at my heels at a time when I maybe won’t be kicking up my heels quite so much in the near future. I desperately hope this prediction is not the case and that The PD Gardener has many more years of flirtation with flora of all species.

In my sanctuary, in my garden, I stay the course, gather my strength and turn a deaf ear to Parkinson’s heartless beat. The garden works a therapeutic magic, magic so strong as to suppress temporarily the tide of muscle movement disorder and non-motor symptoms. It grants me peaceful interludes to reflect on my family and good fortune.  In the garden I am mostly a labourer, often a gardener, sometimes a landscaper, occasionally a naturist, once in a blue moon a horticulturalist, frequently a social historian, and always an amateur philosopher.  I know deep in my heart that each role cannot save me, individually or collectively, from Parkinson’s. But these roles, individually and collectively, provide vehicles through which flora in general and roses in particular (at least this year) seduce me into accepting that, even outside the garden, I am loved as much or more than I love.

Having a new desire, a new focus for your attention, is an important part of the seduction.  There are many new roses on the market making a trip to the nursery even more exciting than usual. I find myself hanging around the rose sections of various garden centres, surfing the Internet for new information and photographs, and being distracted anytime I come near a rose. I have relentlessly pursued some varieties, unsuccessfully as it turns out, until my children hooked me up on blind dates.

To be clear, my affections run strictly to shrub and rugosa roses. I have little interest in tea roses or other roses that I consider high maintenance and finicky. And if it is not hardy to our climate (zone 3 or possibly 4 in some isolated micro- environments in our garden,) I don’t have much use for it either. I am not a protective kind of guy when it comes to roses in winter and I leave them to fend for themselves no matter how severe the weather during those months. They live or they die. If they die I am sad of course but I accept no blame – winter is winter and largely beyond our control. Oddly, I do become more protective when it comes to hot weather or arid conditions. I do want the roses to survive heat waves (and we seem to be having more of these periods as the planet heats up.) I will water roses to keep them healthy and to ensure that they bloom profusely.

It is not easy to describe my love affair with roses but let me try by describing some romantic interludes with several “Rosa.”

Rosa x ‘Oscar Peterson’

I had my eye on several young roses but it was Rosa x ‘Oscar Peterson’ who lured me into a tantalizing, thorny and crazy love affair. This newest rose in the Canadian Artists Series is named in honour of jazz great, Oscar Peterson. I know, Oscar Peterson is male and I am not gay so what is the attraction? In my world, roses are always referred to as being female but in fact, roses are hermaphrodite plants i.e., they have both male stamen and female stigma on the same flower. Monoecious plants have separate male and female flowers on the same plant, and Dioecious plants have only one flower, either male or female, on each plant. Consequently feel free to refer to roses as female or male as is your desire.

Rosa x ‘Oscar Peterson’ is not shapely but is an almost compact square at 1.5 meters x 1.5 meters.  Its buds emerge with the colour of Creamsicles (one of my favourite childhood treats) before maturing into pure white blooms with yellow stamens – no less inviting.

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Rosa x Oscar Peterson  Photo: S. Marshall 2016

Oscar Peterson’s developers were clear in their evaluation of the rose that it met the standards of excellence exemplified by Oscar Peterson as a musician and they encapsulated those thoughts as follows:

“Oscar Peterson’s music was seamless, as if it flowed from his fingers like a spring of clear water. Those who understand music know that such perfection is the result of hard work and endless practice.”

“It is fitting that the new ‘Oscar Peterson’ rose has attributes of perfection. Its flawless, deep green foliage acts as a perfect foil for blossoms that appear as if from a never ending floral spring. These glossy leaves are the result of the hard work and patience of generations of breeders who have worked to create roses with superb hardiness, disease resistance and great beauty.”

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“The semi-double flowers begin life in a shade of softest yellow cream, especially in cooler weather. Often the tips of the petals are lightly touched by red. Soon cream turns to glistening bright white and a contrasting boss of golden yellow stamens. The flowers are arranged in sprays, and, like a musician who finishes his set with style, the petals drop cleanly away once the show is over.”

Far be it for me to attempt to wax more poetic than the above passage to explain why this white rose should be named for a Canadian black musician whose music captivates our minds and captures our hearts, rendering us defenseless to resist its charms. The subtlety and simplicity of the melody cavorting with the complexity of the phrasing plays delicately upon our emotions equally as much as it plays with our emotions, lifting us to the very height of hopefulness, far away from the din of despair. Don’t believe me? Listen to Night Train (released in 1962) the landmark album of the Oscar Peterson Trio (Peterson, Ray Brown and Ed Thigpen.) https://www.youtube.com/watch?v=Dyip9jykZ7o

For me, this is enough said. However, others who are more closely attuned to the sociological phenomena of race, culture and inequality have voiced their view that it is appropriate that the rose named for Peterson is white as it fits his blend of jazz – ‘White’ and not ‘Black.’ Others attribute this white rose faux pas as yet more evidence of a white culture’s ignorance of the racial dynamic.  I fear this horticultural and socio-cultural debate will have to await another occasion – perhaps when another of my favourites, Erroll Garner’s Concert by the Sea, can be introduced into evidence.

Rosa x ‘Emily Carr’

I really must apologize as I intentionally told you a little “white” lie in the previous section – Rosa x ‘Oscar Peterson’ was not my first dalliance in the Canadian Artists series. About three years ago we came upon Rosa x ‘Emily Carr’ with her clusters of deep red blooms calling out for your attention at all hours of the day … and night for that matter. While she is advertised as being wider than she is tall, in our garden she sends up canes 8 feet tall (almost like a climber) on which she proudly displays clusters of  gorgeous blooms continually through the hot and steamy summer.  Surprisingly though she does not rest until a hard frost halts her in her tracks.

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Emily Carr Photo: S. Marshall 2016

“You come into the world alone and you go out of the world alone yet it seems to me you are more alone while living than even going and coming.” ~ Emily Carr

Such a bleak picture to paint. Being alone is a complete package from birth to death and in between. It can be a sad thing but it need not necessarily be so and we often choose to be alone at various times in our lives. Indeed, we are often happy to be alone at those times. Being lonely though is a different matter and is by definition sad as it means the soul is not being nourished. I am not a religious person so I will resist the temptation to speak of faith in a Supreme Being as nourishment, but I know for a fact that the “quiet nothingness” of a loving relationship with another sentient being is indeed nourishment for my soul. [I will elaborate more on “quiet nothingness” later.]

 “Be careful that you do not write or paint anything that is not your own, that you don’t know in your own soul.” ~ Emily Carr

This is a most difficult stricture to follow but I have to say that, even as a want-to-be author, when I do know something in my soul, the words fly off my fingers as if by ordinance finding their place on the page even before meaning, context or content is fully fleshed. Conception and birth occur in one singular flash and there is no room to be alone in that moment of spontaneous combustion, that instance of chemical reaction, that indefinable electrical spark giving life to foggy neurological pulses within our brains.

However, if you have been fortunate enough to know that “quiet nothingness” of love “in your own soul,” you will spend your lifetime searching for ways to express it. I have no intention of competing with Elizabeth Barrett Browning’s straight to the point question in Sonnet 43 How do I love thee? (see Appendix A.) Let me count the ways, of course. But that is exactly what knowing love in one’s soul should be. While the letters may fly off my fingers, I still search for words, phrases and punctuation to convey the perfect image for love. I invariably fail as my talents as a writer are woefully inadequate to meet the task. I do not possess otherworldly attributes necessary to paint the page with words that would liberate love from the constraints of a Parkinson’s world where one’s soul, no matter how willing it is to being a host for love, is rarely sought out for that purpose.

Rosa x ‘Hope for Humanity’

It was in a previous quest for a rose to represent Jean Madill, a centenarian from Altamont, Manitoba, that I began to explore the depths of the new roses. “Hope for Humanity” attracted my eye not only for its beauty but for the political statement that she makes – it is uncommon for the names of roses to be overtly political but Dr. H. H. Marshall did not shy away from politics when he named one of his roses, Adelaide Hoodless, an early suffragette and feminist with both conservative and progressive tendencies which was not uncommon for women of her time.

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Rosa x Hope for Humanity   Photo: S. Marshall 2016

Oh, There Were Others, I Confess

[… and they are all named Rosa ….]

I am afraid that there were others on whom I showered my affections and with whom I spent more than a few afternoons cavorting in the dappled shade of the garden; a few mornings frolicking with my toes moist with dew; hypnotized in cold early October by silvery ‘pre-crystalline’ raindrops on leafy vestments; hungering in early summer for the sweet nectar enjoyed by their rotund Apis mellifera lovers but forbidden to me; caressing the softness of their blooms whilst striving (unsuccessfully) to avoid the bloodthirsty thorns protecting their bodies; being intoxicatingly dizzy from the fragrance of forbidden love in the dusk of the day (or perhaps it is intoxicated by their dusky fragrance at any time of the day.) I say this unashamedly as I now admit openly that I have succumbed to their big city, sophisticated, hybridized ways.

Should I name names? I am not going to go into great detail about the attributes of all of these loves, all named Rosa, as it will be too time consuming, but there are several that deserve more attention. See Appendix B for still others.

Rosa x ‘Campfire’

‘Campfire,’ named after a famous painting by renowned Canadian artist Tom Thomson, was released in 2014. The description on the Canadian Artists series website pretty much says it all.

Campfire, the painting , shows a fire burning in front of a tent lit inside by a brilliant yellow light. It is a masterpiece of design and colour. The rose ‘Campfire’ is afire with the same smouldering blend of yellows and reds.

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Rosa x Campfire Photo: S. Marshall 2016

Rosa x ‘Campfire’ shows a profusion of blooms with colours that are both bedazzling and mesmerizing. Of course I am drawn back to my childhood and the many times I stared into the flames of a campfire while camping, at a family “wiener roast” or at the teenage triple X rated (for offensive language, drunkenness, overt attempts at sexual activity however inept, and outright teenage stupidity) version of a wiener roast. No matter the context, you cannot help but be drawn into Campfire’s flames where your desires, excited by the heat, race through your arteries in a desperate attempt to carry oxygen to the “smouldering” coals, freeing any inhibitions. If you place ‘Campfire’ within the context of sex, love and intimacy, its mass of blooms might very well conjure up the word “orgy.”

Rosa x ‘Bill Reid’

Rosa x ‘Bill Reid’ is a rose I longed to acquire because we had no surviving yellow or gold roses in our garden. A small yellow tea rose did not survive the winter a few years ago leaving us without the sunny spectrum. ‘Bill Reid’ is named for a legendary broadcaster, writer, poet, storyteller and communicator who introduced much of the world to the art traditions of the indigenous people of the Northwest Coast.

“His legacies include infusing that tradition with modern ideas and forms of expression, influencing emerging artists, and building lasting bridges between First Nations and other peoples.”

“He combined European jewellery techniques with the Haida art tradition. His passion for Haida art was kindled by a visit to Haida Gwaii in 1954 when he saw a pair of bracelets masterfully engraved by the great master carver and his great-uncle, Charles Edenshaw, after which, to use his own words, “the world was not the same”. For the next 50 years Reid embraced many art forms. His many powerful sculptural masterpieces include The Raven and the First Men, the Haida creation story, and The Spirit of Haida Gwaii, showcased at the Canadian Embassy in Washington, D.C. and at the Vancouver International Airport.”

“The Bill Reid rose is reminiscent of the medium the artist Bill Reid often used: gold. The rose itself has a vibrant golden hue, which it retains even under the strong rays of the summer sun. The colour denotes energy, warmth and vitality. And much like the artist, the Bill Reid rose flowers prolifically, more so than other yellow roses. In true Canadian fashion, this rose is hardy to zone 3.”

Needless to say I was thrilled to come across Bill Reid, quite by accident, at the garden centre. In fact, it was early one Monday shortly after opening, and I was at the cash when a supplier for the nursery was unloading a small wagon load of roses. There was Bill Reid, tucked in the back of the wagon, in full golden glory highlighted by the early morning sun. I asked if it was for sale and was told yes but it hadn’t been priced yet. I was unconcerned about the cost as I was smitten with it from first sight and after the business dealings were completed I whistled my way home excited by the knowledge that I would soon hug Bill Reid and position him in a suitable sunny spot.

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Rosa x Bill Reid      Photo S. Marshall

Every once in awhile there are love affairs that remind you that the course of young love does not always run smoothly and that you should be cautious, especially in the early stages. So it was with Bill Reid. It was not long before I noticed some vile critters inhabiting Bill’s foliage and blooms. They looked very much like the Japanese beetles that have a voracious appetite for soft rose petals. Immediately I began the ugly process of picking the beetles off and depositing them in a solution of detergent and water. As I write this, I have quite a horrific soupy mess in that container. My objective is to contain the invasion although I have discovered that the beetles also love Canna leaves and Lythrum flowers. After several days my picking finally slowed down but I am realistic enough to know that an infestation will be avoided only if my neighbours are as diligent as I am in harvesting the little buggers (a word my father would definitely use in this circumstance.) To make matters worse the Japanese beetles dine on some 200 different species of plants. I will make every effort to avoid using pesticides.

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Japanese Beetle   Photo: Wikipedia

The meeting and courtship of Bill Reid was quick, easy and intense. However, as is often the case, inattention to certain health matters may strain the relationship in the short term if not in the long term.

Rosa x ‘Marshall’s Peace Garden’

Rosa x ‘Marshall’s Peace Garden’ is a ‘sport’ of the popular Morden Blush, bred by Dr. H. H. Marshall and a favourite of ours for many years. I am counting on Marshall’s Peace Garden to capture my heart and make me blush with its abundant creamy white flowers and glossy foliage on a tiny 2 ft. x 2 ft. frame. I am told that it has a wonderful fragrance but as I have Parkinson’s most of my sense of smell disappeared long ago. Listed as hardy to zone 2 there should be no winter-kill problems in our area.

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Rosa x Marshall’s Peace Garden          Photo: S. Marshall 2016

My particular affinity for Peace Garden stems from the fact that it is named in honour of my uncle Henry who was a member of the Board and Horticultural Planning Committee of the International Peace Garden (see Note 6.) Peace Garden was propagated by Terry Roszko, Canada, circa 2000 and introduced commercially in Canada by Jeffries Nurseries Ltd. in 2012 as Marshall’s Peace Garden Rose. In fact, the specimen that I planted just this morning was a gift from my daughter and her partner who made a side trip to Jeffries Nurseries while visiting family in Manitoba, carefully bringing Peace Garden’s spiky fullness as carry on luggage on their flight home. I had been trying to source Peace Garden locally without success. When my daughter and her partner surprised me by introducing Peace Garden on a blind date if you will, the excitement of meeting this unexpected and beautiful rose was palpable.

Sex, Love and Intimacy

[Put sex, love and intimacy together in one human relationship and ....]

OK, enough with the roses. Back to the main topic. Many people are too shy, inhibited or embarrassed to talk openly about sex, love and intimacy, preferring to keep such information close to their vests or perhaps close to their hearts? Others succumb to a commonly held societal belief that these emotions and thoughts are “dirty” and not to be discussed “in polite company.” Still others would allow that only researchers with a PhD in psychology and a specialization in sexuality be permitted to explore these basic elements of human instinct, analyzing and discussing it in ‘academic – speak.’ Heaven forbid we should actually feel something.

Sex, love, and intimacy are three of the most important words in the language of relationships but I suspect that they are three words often shunted to the sidelines because, when spoken aloud, these words cause us to be awkward and self-conscious about what we perceive to be personal and private matters. Yet, love, intimacy and sex make sense only in the context of a relationship between at least two individuals so absolute privacy is automatically abandoned upon the necessary formation of a single dyad (sounds like an oxymoron.) In other words, by definition, there is always someone else who has inside information on your love life, your comfort level with intimacy, and your sexual proclivities. So, let’s not get too hung up on an argument that personal and private matters are … well… personal and private, belonging only to ourselves as individuals.

It is also the case that love, intimacy, sex are often compartmentalized and treated each unto itself as a separate concept, with separate meanings and a separate set of feelings … and sometimes they are distinct. Language, being the primary vehicle for discourse among humans, must possess a certain precision that enhances understanding. But surely that does not mean that we must always drill down in a reductionist way to the most infinitesimal element. Having said that, while it is true that a convincing argument can be made that love, intimacy and sex can be defined individually, it is only when these three powerful human emotions and behaviours are put together in a ‘mash up,’ as younger folk say these days, that the truth is revealed. They are really individual recognizable segments of something that is greater than the sum of its parts. Regular readers will recognize this as a recurring theme in my posts – society is greater than the sum of its parts. I blame it on Emile Durkheim and my training in sociological theory.

Let’s complicate things just a little more by adding that in today’s world much emphasis is placed on the use of “clear language” in an attempt to cut away the superfluous, to enhance communication so that ideas can be discussed with equal precision among all participants irrespective of class and other social or economic divisions. I understand the necessity for clear language in many situations but I don’t subscribe to the “clear language is always better” approach. I believe that it takes many levels of discourse to understand the complexities of life. Oh sure, sometimes language is frustratingly complex, unnecessarily obtuse, and gratuitously verbose but a living language will evolve both to smooth out the rough edges of precision and to give precision to the softness of fuzzy articulation. The aggregation of several meanings into one concept or construct is one such smoothing technique which allows language to reach precision through a higher level of discourse.

Let me illustrate it this way: put love, intimacy and sexuality together in one package in the entertainment industry and you have a blockbuster hit rocketing to the top of the charts – “number one with a bullet” as DeeJays used to say. It will hit the jackpot, be a winner, a jewel, and ‘toadilly awesome.’ It will also, most likely, be fiction. But put love, intimacy and sex together in one human relationship and … well … (thinking … thinking … thinking)… there are no words …. and it (the love, the intimacy and the sex, individually and collectively) will inevitably be real –  often sought, rarely realized.

I know, you are thinking, “The PD Gardener is off on one of his tangents again, spouting off about things of which he knows nothing.”  Hmmmm … maybe, maybe not.   Stay with me to find out if I can tie up this seeming stream of consciousness with a pretty bow.

Love is “Quiet Nothingness”

[ … a life free of drama …]

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Image from Wikipedia

Obviously I am not the first to have contemplated the complexity of sex, love and intimacy and the importance it plays in our lives. Cheryl Saban has a series of short posts on the topic that are worthwhile reading. I am not going to summarize her thoughts but I will draw your attention to a couple of specific observations. The first of which is that she is writing from a woman’s perspective when she observes that a female’s sex drive is more than just survival instinct.

“As a species, our sex drive is a survival instinct. But as a female, your sex drive is obviously more than an instinctual need; it’s wrapped up in feelings of comfort, love, companionship, excitement, naughtiness and hope.”

Well, I have news for you; these feelings are not reserved for females alone. Still, I suspect that in my early, more macho male life, my desires and emotions were not anchored in this approach. I had a process of maturing to go through, including a divorce and a somewhat painful but finally fruitful search for my – Gawd, I can’t believe I am going to say this – “soulmate.” As much as it pains me, I will leave the forgoing sentence in tact as “soulmate” does have meaning in romantic discourse to most people and that is that common understanding I wish to convey here. But there is more. In fact, what I was searching for and what I found was a relationship where love, intimacy and sexuality are in a state of ‘quiet nothingness.’ [Okay, I am counting on you not to shout “drivel” and hit the escape key to exit this nonsense. Please bear with me.]

Do not take this literally to mean that sex, love and intimacy are nothing because it is impossible to conceive of “nothing” unless we also acknowledge the existence of “something.” Put differently, we can approach a state of “nothing” but we cannot achieve a state of “nothing”.  To approach “nothing,” “something” is minimized or simplified to its most basic ‘somethingness’. I like to think of it as an expensive sound system with a complicated soundboard where all the elements of great sound are captured but everything is turned to its minimal reading. We hear nothing but the lights are lit and flashing. Intimacy, love and sex are in “quiet nothingness,” simmering, occasionally showing energy genuine to each element but always at the ready to arouse positive emotion. The simplification and minimization means that the relationship is held in tact with little work. Achieving this state of “quiet nothingness” is to achieve a state of togetherness of two minds and bodies, perhaps analogous to Zen. A key descriptive phrase for me is “free of drama.” I have been truly fortunate in that I know first-hand what that state of mind and body feels like … but it can be fleeting if one is not careful.

It is no secret that the soundboard controls the eruption of displays of energy from time to time.  When such energy is incorporated into the structure of the music for example – as a bridge, a chorus, refrain, verse, coda (or in any other creative way)  – the music and the sound can approach such perfection that only a highly trained ear can detect the subtleties defining it as otherwise. It is the same with the “quiet nothingness” of love … flying low in stealth mode beneath the radar … lethal in its efforts to target and destroy thoughts and behaviours that inhibit intimacy, and … complicit in bringing to life a sexuality  which would be declared illegal by those who have not experienced “quiet nothingness.”

Parkinson’s is a Troubled Dance of Rationality and Irrationality

[“The only thing we have to fear is fear itself ….”]

Parkinson’s is such a complex of motor and non-motor symptoms that in its early stages we often overlook symptoms related to our psychological well being e.g., it increases anxiety and stress, plays with our emotions and leads us towards feelings of depression and sometimes despair. So we begin a troubled dance between rational and irrational thought especially when it comes to love and intimacy.

I reason (rationally and correctly I believe) that the further I travel along the Parkinson’s road, the greater the probability that the usual nasty features of Parkinson’s including Lewy Body dementia will compromise my ability to sustain an intimate relationship.  How tragic that would be! But let me be clear: as I write this there is no tragedy in my life and each day is replete with reaffirmation of my love for Anne and her love for me. Still, even the most serene individuals have anxieties and are susceptible to irrational thinking from time to time. Parkinson’s provides sustenance for those anxieties, keeping them on a slow burn until fear and insecurity blows them out of proportion.

Fortunately most anxieties are relatively minor and can be handled effectively with planning and successful experience e.g., anxiety about how Parkinson’s will behave when traveling or when attending a special event. Other fears are more serious e.g., a fear that your Parkinson’s creates an unbearable burden for your spouse, partner and/or lover leading to a tragic end to an intimate loving relationship. In matters of the heart the emotional roller coaster of Parkinson’s can entice you into jumping too quickly and erroneously to that conclusion. In fact, insecurities may spawn unacceptable jealous behaviours that put enormous strain on intimate relationships, perhaps to the point of breakdown.

You might ask the question: Why would a PwP want to destroy happiness and contentment and replace it with a tragic heartbreaking ending?  Rationally, there are no compelling reasons to do so but when you are trapped in the world of irrationality where Parkie lives, fear can become an almost crippling burden, and if we are not careful, it can become a self- fulfilling prophecy.

Perhaps Sir Francis Bacon was correct when he wrote “Nothing is terrible except fear itself”) or maybe we should attribute it to Franklin D. Roosevelt, the 32nd President of the United States, who said in his first inauguration address on Saturday, March 4, 1933

“… let me assert my firm belief that the only thing we have to fear is … fear itself — nameless, unreasoning, unjustified terror which paralyzes needed efforts to convert retreat into advance.”

Parkinson’s disease is a fearsome thing. It can strip you of every dignity at a moment’s notice if you are not attentive to your medical, pharmaceutical, psychological. dietary and physical regimes. It is not stretching it to say that Parkinson’s plays a wicked game of chicken with you in your social relationships. It dares you to consider that it has not diminished you. Maintaining your mental strength in the face of such a challenge is extremely difficult because you notice and feel any newly acquired Parkinson’s symptoms so acutely that you are certain the unreasonable demands of your Parkinson’s are denying your spouse, lover, partner a full and complete life. The threat to the viability of your relationship is real and you take full ownership of that ‘failure’ because it is your Parkinson’s disease that is responsible.

Not only is the PwP responsible for the burden but the onus and indeed the impetus is on that same PwP to “free” her/his lover so that s/he may leave the relationship (or any part thereof) to pursue a full and more complete life elsewhere, maybe with someone else. Voilà, guilt free extraction from a life of burden for which you ‘did not sign up.’ Okay, maybe there is some guilt but it is ameliorated by a complex of rationale and justifications. These fears and insecurities are real to a PwP … well, they are real to me anyway.

Facing a life with Parkinson’s alone is extremely difficult. Facing those travails as a couple in an intimate relationship or as a family can make the journey more tolerable but it also means that the path may grow bumpy if one of more of those individuals go outside the understandings of the others. If the commitment is love and the understanding is that love is sexual, intimate and forever, and one individual no longer accepts this commitment, the whole deal goes sour – sometimes very quickly.

I am in a loving relationship and I would never say that my lover should end it because I have Parkinson’s. Why would I be so foolish? We have a love that is exquisitely painted, as if the muse was in full control; a love with great swaths of colour and texture like fields of lupins strewn in purposeful abandonment by Mother Nature; a love brushed into place with the precision of computer technology and the creativity of the Group of Seven.

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Mother Nature’s portrait of a field of Lupins   Photo: S. Marshall 2014

It is true that Anne does provide care for me … but she does not identify herself as my caregiver nor do I want to reflect her role back to her as that of being a caregiver. Anne is my wife and lover. It is also true that I thank her every day for her support … but I am most thankful that we share a love that is not rooted in caregiving. My greatest task is to return her love by projecting myself as her husband, lover, friend and not as her patient or worse, as her burden. Maintaining and strengthening relationships is much easier if one can avoid using pathos as the glue that holds the relationship together.

Relationships and Adversity

Okay, so far so good, but the bad news is that “quiet nothingness” is not impermeable and there are many threats to its fabric e.g., a diagnosis of a terminal or chronic disease not only changes how you perceive yourself but how others perceive you. This certainly has been my experience after a diagnosis of Parkinson’s disease – a progressive neuro-degenerative disease for which there is no cure. Oh, there are medical, pharmaceutical, physiotherapeutic, psychological, and exercise/movement programs designed to enhance quality of life but inevitably your life will take a path that you would not choose if you had a choice. The rules of the game for relationships may change and the potential for increased tension and stress increases along with a concomitant likelihood that “drama” will result.

When a relationship is under stress you might think that the survival instinct would kick in to override any “soft” emotional feelings, but that is not what happened to me. By the time of my diagnosis of Parkinson’s, I was in my mid – 60s and procreation was far behind me. I already had four perfect daughters in a perfectly blended family.

When I attempt to isolate the key factors contributing to my emotional well being, I am hard pressed to come up with any that are more important than feelings of self-worth. You see, Parkinson’s robs you of your sense of self-worth; it diminishes you. Like a thief in the night it silently robs you of your ability to be the strong one in a relationship. Ironically and wickedly, that same attack on self – worth robs you, as a person in need, of the ability to accept assistance and care, and you can lash out at those who care the most; those who love us; those with whom we have intimate relationships.

If you do have an illness though, life and relationships can change drastically. Karl Robb sums it up this way,

“Realize that an illness can either help bring you and your partner closer together or push you further apart, depending upon how well you are able to cope with challenges and the strength of your bond, prior to illness.”

I am not as charitable as Robb in that I don’t think that Parkinson’s brings many people closer together, at least not in the long term. There is no cure.  It is progressively degenerative and it will advance in both the number and severity of the symptoms.  No matter what some people say, you cannot delay its onslaught forever. It will catch up to you, one way or another.

Indeed, my perception is that if you and your partner didn’t get along well before your diagnosis, it is a good bet you won’t get along any better after diagnosis and certainly not after nasty symptoms or side effects of the drugs begin to rear their ugly heads – dementia, dyskinesia (exaggerated involuntary muscle movements which are often the side effect of the drugs,) cramping, difficulty swallowing, loss of balance resulting in falls with injuries, incontinence, constipation, rigidity, Bradykinesia (slowness), decreased sexual desire and increased sexual dysfunction, hallucinations, violent lashing out during vivid dreams, and loss of the ability to conduct activities of daily living, to name but a few. None of these symptoms are known to increase the likelihood of developing an intimate relationship if there is no prior history of such a relationship between individuals. Parkinson’s works against you every step of the way.

The Importance of Intimacy

[As we slide closer to each other, my lover whispers provocatively, “… and she felt the gardener’s work roughened hands on her skin …”]

When Parkinson’s destroys intimacy in a relationship, it wins. You slip from being lovers to being caregiver and patient, a misstep (in my view) that changes how each person perceives the other person and in the end destroys any sense of self-worth a PwP has remaining. Once the non-PwP in the relationship believes that intimacy, love, sex (and sexuality) are no longer important in the relationship, the gig is up. I hasten to point out however that the same is true if a PwP is no longer is invested in maintaining an intimate relationship with her/his partner.

Cheryl Saban describes succinctly just how important romantic intimacy is.

“Romantic intimacy and the idyll of two people bonded in love, that most sacrosanct of emotional states, is something most of us desire and in fact, need. Love is a crucial part of our lives, connected as it is to our sense of well-being and worth. The blend of love and sex requires commitment, a special type of chemistry between the two of you, and an ability to build intimacy.”

Intimacy is a word that is both innocuous and intimidating. At first glance, it seems to be something less than ‘love’ but upon closer examination it is a keystone in the foundation of close relationships. Being intimate with someone, while not the same as being in love, is something we are likely to experience with very few others in a lifetime … if we are so fortunate.

Jonathan Lenbuck in “How does sex differ from intimacy,” defines sex and intimacy in ways that I find very helpful to understand the role Parkinson’s plays in relationships.

“Intimacy is at the heart of a strong relationship. Intimacy is about knowing someone deeply and being able to be completely free in that person’s presence. It is an emotional state that is often reserved for just one person.”

“Being intimate with your partner requires you to be open and honest with him or her, and it is from this state of intimacy that great sex grows. This can sometimes be a hurdle in a relationship.”

Undoubtedly, young onset PwP are at a time in their lives when dating and sexual relationships occupy proportionally greater space in day-to-day relationships compared to those of us who are diagnosed in our 60s and heading into our 70s. A reduction in the amount of time, effort, money, etc. put into a sexual relationships is likely for those 60 years of age and older, but don’t ever fall into the trap of believing that it occupies no space in those relationships. On the contrary, love, intimacy and sex may be more central to living a healthy life with Parkinson’s (is that an oxymoron?) than we think. Hopefully some of us have found a relationship that satisfies our physical and emotional selves. I was going to say that some are patiently waiting for such a relationship but it is more likely that they have given up the quest, giving in to impatience rather than patience, resigning themselves to never finding this nirvana. Some are living in relationships devoid of love and intimacy (and probably sex) but do not take measures to change. Some of us live a bittersweet existence with memories of the ecstasy of being in love and the heartache of a life gone too soon.

Pay Attention

[Be careful, the rules can change…]

Parkinson’s changes the rules of intimacy. The inability to show emotion (particularly laughter) through facial expression, (the “mask “associated with Parkinson’s) can change the dynamic of a relationship which relies upon knowing and almost invisible facial cues and eye contact. Involuntary muscle movements can make even simple loving actions such as hand holding or cuddling impossible or so difficult as to be frustrating for both you and your partner. The excitement of close sexual contact – so thrilling and rewarding in the prime of your life – is often turned cruelly against you, as if your Adrenalin has been turned on to hyper speed, increasing debilitating involuntary muscle movements and rendering both intimacy and sexual gratification unattainable. Such frustration can exacerbate issues of erectile and sexual dysfunction already prevalent in Parkinson’s.

Changes in self-perception and how others see you can spark a destructive mutually reinforcing downward spiral (the more your self-worth is diminished the more you engage in behaviours that reinforce that self-image and the more you project a picture of low self-esteem to others which in turn contributes to others behaving differently towards you and on … and on.)

No matter the stage of the progression of Parkinson’s, any couple in an intimate relationship will face the almost ever-changing challenge of maintaining a relationship that provides food for the emotional self. The European Parkinson’s Disease Foundation (EPDF) has an excellent article on intimacy, sex and sensuality.

“If you are in an intimate relationship then you will both probably experience some difficulties regarding intimacy, sex and sensuality. These can be associated with anatomical, physiological, biological, medical and psychological factors, all of which can impact on self-esteem, quality of life, mood and relationships.”

In no uncertain terms, the EPDF alerts us to potential dangers and urges us to pay attention to intimacy, sex and love because they impact on our sense of self – worth and our ability to combat Parkinson’s, to the extent that we can combat it.

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It may appear beautiful but it is quite frozen and dead  Photo: S.Marshall

Some may argue that intimacy can be based on caregiving. Perhaps, but that intimacy is of a different nature – in fact, it is nurture. Nurturing can be intimate but it is not the whole of an intimate relationship – the “quiet nothingness.” The step from sexual intimacy to caregiving intimacy is a large one. Once one stops desiring a partner sexually, perceptions on both sides of the relationship equation are turned – probably irrevocably forever. At this point it matters not whether your mother/father, your sister/brother, your wife/husband, or a paid caregiver from a public not-for-profit or a private for-profit agency is caring for you. The intimacy is gone – and you just can’t get it back.

Conclusion

[We carry these desires with us to death, illness or not]

If you think that Persons with Parkinson’s (PwP) are not sentient, sexual, sensual human beings then disabuse yourself of that notion immediately, especially if you are the significant other of such a person. I am entering the “early elderly” – a stage of life where I do not wish others to deny my right to desire love and intimacy. If you think that we don’t have such desires, you diminish us as human beings.

If you have accepted “cargiving” as the only meaningful relationship that you share with your PwP partner, then at least understand what that means for each of you. As a PwP, I would be grateful for the care, but I would saddened immensely more by the loss of love and intimacy – you see, that loss transforms care giving into an obligation and therefore a burden.  It is likely that by the time this transformation took place, I would be incapable of doing anything about it, other than to look quite pathetic and therefore even more expendable in emotional terms, making the situation all the more catastrophic and tragic.

Finally, I may have Parkinson’s disease but I am not looking for a caregiver, I am looking for love.

AFTERWORD

[You never promised me a rose garden …”]

This has been a story of family, love, sex, intimacy, fidelity, roses, Parkinson’s (the rational and the irrational) and its ravages, self-worth and relationship survival. I hope it has provided some insight into what a PwP … well this one at least, thinks about these matters.

Ever since I began my affair with the roses this past summer, my lover is fond of saying, “ you never promised me a rose garden but I should have known better because I am married to The PD Gardener.” My comment is that The PD Gardener (both the gardener and the Parkinson’s disease) was residing within me when we met, courted and married but Parkinson’s only stepped out of the shadows recently. The rose garden though is a family characteristic. In many ways it is a family heirloom. It came with me but I did not create it.  Roses are my link to the past, my anchor in the present, and my guide to the future with the additional benefit of being an iconic gift to my lover.

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The PD Gardener and his lover 2015

I sometimes joke that the irrational thinking arising from Parkinson’s gives me only one fundamental concern. Anne has a brother and a sister and each of them has been married three times. This is the second marriage for both Anne and me.  My concern is that Anne may wish to marry a third time to catch up to the family average (it’s a joke remember.) Of course, there is every likelihood that Anne will outlive me and she may well marry again after I have left this mortal coil. Let it be known that with whatever ego that Parkinson’s has not stripped from me, I do fantasize that I am her one and only great love … but I know that our “quiet nothingness” does not include unreasonable strictures that exceed the bounds of my lifetime.

My most fervent desire is that our relationship continues on in “quiet nothingness” – love, intimacy, sex, all with no drama. However, if there is to be drama let it be with my caregiver and not with my lover.

The path through this blog has been circuitous as usual: from the elopement of my grandparents to a PwP’s wife taking on a lover; from baseball to country and western hurtin’ music; from love affairs with roses to the many ruminations of a PwP on love, sex, and intimacy; from fear to insecurity to trouble to “quiet nothingness;” and much more.  I began this journey with ruminations on love, sex and intimacy. It ends as a love letter, a love letter that reveals my deepest fears and codifies my unwavering love and commitment to provide nourishment for an intimacy my lover and I will share over our years together.

NOTES

  1. Geez, two paragraphs into a posting about love, sex, intimacy and Parkinson’s and I am already bringing down the mood with a “Note.” Sorry about that but I find it necessary to provide some context and juxtaposition for these concepts and to advise that these words are always presented “in no particular order” throughout this text.  Sex is the “hard” word in the triumvirate and intimacy and love are the “soft” words. Sex can be reduced to the enactment of basal instinct while intimacy and love rest in the innermost niches of our secure selves (when all is right.) Love is virtually impossible to measure – according to MarsBands.com there are over 97 million love songs in the world. Intimacy is often secretive and may be intimidating. Sex can be either a dominant feature or a silent partner and sometimes masquerades as “sexuality,” a seductress embodying desire and lust. In any case, rarely are all three found in perfect harmony within a single human soul. Such harmony is contingent upon the degree of equilibrium (and disequilibrium) created by these three powerful human forces as they sing together – either in harmony or discordantly as the moment commands. Mastering the harmony, the contentment, and the equilibrium is one of our greatest challenges to ensuring that a soul is at peace.When communication between two individuals is sufficiently advanced to articulate such contentment, [I bet you are thinking that I will say “two souls become one” but nope – too sappy, done at too many times at too many weddings] then tranquillity and quietude subsumes all tempests in human emotion, whether in a teapot or on stormy, high seas. There is no need for these souls to be lashed to the mast; they are free yet secure against the buffeting of dark forces within our psyche and free of any temptation to follow the song of the Sirens (female and male.)
  2. Encyclopedia.com, Notable Sports Figures | 2004 | Belfiore, Michael copyright 2004 The Gale Group, Inc.
  3. It is impossible (for me at least) to plant a rose without giving it a hug. As I lower the root ball into the already watered hole, I reach around her to ensure that she has the proper orientation and that I can reach the excavated dirt on all sides in order to scoop in handfuls around the rose’s roots. I hand tamp it firmly into place and placing my hands on top of the soil near the base of the union, I give it a final firm caress and press the soil snugly around her. In the summertime, I am most often in the garden in a short sleeve T-shirt.   The result is predictable. I look down at my arms to discover (once again as I never seem  to learn) that my rose has decided to object to the cuddling, if not the coddling, and has bitten me in several places, severe enough to draw blood, running down my arms in streams, drying and sticking to my hair as it as it flows, giving it crime scene worthiness as an image. More than once I have emerged from the rose garden to shouts of “Don’t you get mud and blood all over the house!” And later I am treated to sighs of resignation as my lover states the obvious, “I am married to the PD Gardener. What did I expect?” For my part, I continue to hug my roses as necessary throughout their existence and my arms get punctured and leak blood occasionally. [Did I mention that I hate long sleeve heavy work shirts?]
  4. The Winnipeg Free Press notes that “Marshall, cross-breeding with wild roses he dug out of ditches, oversaw the introduction of over 40 new rose varieties, including the Parkland series.” The rose development program of the Morden Research Station was privatized in 2008 and is now operated by the Canadian Landscape Nursery Association.
  5. Creamsicles were one of my favourite treats when I was a child. Vanilla ice cream on a flat stick with flavoured ice on the outside. My favourite flavour was orange and for a long time I believed there was only one flavour but there are others including blue raspberry, lime, grape, cherry and blueberry. Nevertheless, I still think there should only be orange.
  6. The International Peace Garden was dedicated on July 14, 1932 in front of some 50,000 persons.  A cairn is inscribed with a “promise of peace:”

cairn-peace-garden

“To God in His Glory

We two nations dedicate this garden and pledge ourselves that as long as men shall live we will not take up arms against one another.”

7. “Robin Williams’ Widow Pens Emotional Essay About the Comedian’s Final Days – ABC News – abcn.ws/2di34WH via @ABC

APPENDICES

Appendix A

How do I love thee (Sonnet 43)

How do I love thee? Let me count the ways.
I love thee to the depth and breadth and height
My soul can reach, when feeling out of sight
For the ends of Being and ideal Grace.
I love thee to the level of every day’s
Most quiet need, by sun and candlelight.
I love thee freely, as men strive for Right;
I love thee purely, as they turn from Praise.
I love with a passion put to use
In my old griefs, and with my childhood’s faith.
I love thee with a love I seemed to lose
With my lost saints, — I love thee with the breath,
Smiles, tears, of all my life! — and, if God choose,
I shall but love thee better after death.

~Elizabeth Barrette Browning

Appendix B

Here are some more “Rosa” who have captured my eye over the years. They are scattered throughout our garden. I am afraid I will have to wait for a later post to wax poetic about their qualities.

fireglow

Morden Fireglow  Photo: S. Marshall

prairie-joy-img_7160

Prairie Joy  Photo: S. Marshall

blush

Morden Blush  Photo: S. Marshall

belle

Morden Belle  Photo: S. Marshall

centennial

Morden Centennial  Photo:   S. Marshall

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Morden Amorette  Photo: S.Marshall

REFERENCES AND RESOURCES

Anapol, Deborah, Ph.D. “What Is Love, and What Isn’t?” from Love Without Limits Psychology Today https://www.psychologytoday.com/blog/love-without-limits/201111/what-is-love-and-what-isnt

Australian Broadcasting Corporation http://www.abc.net.au/radionational/programs/earshot/the-three-of-u­­­s-carer-husband-and-lover/7566610

Birth Psychology https://birthpsychology.com/journals/volume-2-issue-4/significance-birth-memories

Canadian Artists Roses http://www.canadianartistsroses.com/en/roses.html

Canadian Geographic http://www.canadiangeographic.com/wildlife-nature/?path=english/species/honeybee

Deeth Williams Wall http://www.dww.com/articles/canadian-designs-morden-%E2%80%9Cparkland%E2%80%9D-roses

Encyclopedia.com http://www.encyclopedia.com/topic/Roy_Campanella.aspx

European Parkinson’s Disease Foundation, “Intimacy, Sex and Sensuality,” updated June 2015. http://www.epda.eu.com/sl/pd-info/living-well/intimacy-sex-and-sensuality/

Gardening.about.com http://gardening.about.com/od/gardenproblems/a/Japanese_Beetle.htm

http://www.greekmythology.com/Myths/Creatures/Sirens/sirens.html

International Peace Garden http://www.peacegarden.com/index.html

Lenbuck, Jonathan, “How does sex differ from intimacy,” World Psychology http://psychcentral.com/blog/archives/2013/04/26/how-does-sex-differ-from-intimacy/

http://lyrics.wikia.co/wiki/Johnny_Darrell:Ruby,_Don’t_Take_Your_Love_To_Town

Manitoba Agriculture Hall of Fame biography of H.H. Marshall http://www.dirtytshirt.net/ahof/ahofmember/marshall-henry-heard/

Mars Bands.com http://www.marsbands.com/2011/10/97-million-and-counting/

Marshall, H. H. Not Because of Beginnings, undated and unpublished manuscript

Michael J. Fox Foundation, FoxFeed Blog, “Swallowing and Parkinson’s Disease,” posted by Michelle Ciucci, November 05, 2013. https://www.michaeljfox.org/foundation/news-detail.php?swallowing-and-parkinson-disease

Oak Leaf Gardening http://www.oakleafgardening.com/glossary-terms/hermaphrodite-monoecious-dioecious/

Pembina Today http://www.pembinatoday.ca/2010/08/09/famed-rose-program-leaving-morden

Poets.org https://www.poets.org/poetsorg/poet/elizabeth-barrett-browning

Robb, Karl “In sickness and in health: Intimacy and Parkinson’s,” National Parkinson Foundation, http://www.parkinson.org/understanding-parkinsons/newly-diagnosed/intimacy-and-parkinsons

Saban, Cheryl, “Sex, Love, Intimacy: Understanding and Enjoying Your Sexuality,” http://www.care2.com/greenliving/sex-love-intimacy-understanding-and-enjoying-your-sexuality.html

Shapiro, Miton J. The Roy Campanella Story, New York: Messner 1958

Sing Out.org http://singout.org/2016/04/11/ruby-dont-take-your-love-to-town/

The Honey Bee Conservancy http://thehoneybeeconservancy.org/2015/09/13/enemies-to-bees-pesticides-and-hybridized-plants/

The Old Farmers’ Almanac http://www.almanac.com/pest/japanese-beetles

Turtle Mountain Star, Newspaper Archive, Rolla North Dakota, May 2, 2011 http://tur.stparchive.com/Archive/TUR/TUR05022011p009.php

Winnipeg Free Press http://www.winnipegfreepress.com/arts-and-life/life/bloom-off-rose-for-morden-breeding-program-100178814.html

© Stan Marshall (The PD Gardener) 2016

LEARNING TO WALK AGAIN … OR … READING BETWEEN THE LINES

Learning To Walk Again … Or … Reading Between The Lines

Author’s foreword

Readers of this blog know that I have been accused of (and admit to) writing extremely long blog posts with content that takes many twists and turns before finally arriving at some evident, or not so evident, conclusion. Now, I am aware that many people neither like, nor read, lengthy posts and they have articulate reasons for their inaction and inattention.

Equally, I am aware that there is a long and honourable tradition among those who love newspapers (and especially among those who impress upon others that they read their broadsheet newspapers from cover to cover,) to read the headline, a few of the sub-heads and first sentence and then move on to the next article. Naturally, they look at the photos – in a kind of reverse approach to how many men say they read Playboy or Penthouse. 

Today, I acquiesce to this reading style by writing in a form to match i.e., this post will consist of one headline with five sub-heads and respective opening sentences mimicking the content many readers would actually read even if the article were thousands of words longer.  I approach this project fearfully as it is a major departure from my usual style and so many words will have to die in the editing process. Read on to see how this works out.

PERSON WITH PARKINSON’S RENDERED IMMOBILE

The PD Gardener, having walked and cycled almost all of his life was understandably shocked at becoming almost completely immobile i.e., not able to walk without assistance, over a very short time span (4 – 5 days.)

IMG_0105

The PD Gardener doing what he does. Photo: Anne Marshall 2014

Looking for answers (in all the wrong places?) 

“Doctor, Doctor, Mister M.D. Can you tell me what’s ailing me? “ (Endnote 1)

and

Knee bone connected to the thigh bone

Thigh bone connected to the hip bone

Hip bone connected to the back bone (Endnote 2)

The above lyrics sing to me as I struggle to understand the crisis that currently engulfs my body and brain but unfortunately the answer seems locked forever in a “song that never ends.” (Endnote 3)

‘Advance’ and ‘progress’ are positive words, aren’t they?

It is a sobering moment when you realize you are ticking off the progress of your new and/or worsening Parkinson’s symptoms on a mental score card of scientifically established, empirical milestones signifying the intractable advance of Parkinson’s.

Symptoms defy explanation say medical specialists

“Appointments with various physicians, surgeons and other health professionals have left us confused and frustrated.”

The new normal 

Physiotherapy, Pilates and exercise show definite promise to lead the way back to a new normal … but why does the new normal feel like walking on bubble wrap?

IMG_2389

Better take provisions if the journey is 1,000 miles like this first mile.  Photo: The PD Gardener 2015

Next step
“It is often said that ‘a journey of 1,000 miles starts with a single step’ (end note 4) … but the importance of finding the start line and the correct direction should not be underestimated,” the PD Gardener notes sardonically.

IMG_3159 (1)

Perhaps the answer is just around the corner and down the hill…. Photo: The PD Gardener, 2015

End Notes

  1. “Good Lovin’ “ lyrics by Rudy Clark and Arthur Resnick. Number hit for The Young Rascals 1966.
  1. “Dem Bones” is a spiritual written by James Weldon Johnson circa 1920.
  1. Origin of “This is the song that never ends” or “This is the song that doesn’t end” is unknown but seems to have been made popular by Shari Lewis and Lamp Chop.
  1. Attributed to Lao Tzu, a contemporary of Confucius and a major figure in Chinese philosophy.

© Stan Marshall (The PD Gardener) 2016

AN ‘ANNOYANCE’ OF NIGGLES, THREE REMARKABLE WOMEN, AND A DASH OF COLD, HARD REALITY

AN ‘ANNOYANCE’ OF NIGGLES, THREE REMARKABLE WOMEN, AND A DASH OF COLD, HARD REALITY

hat Thepdgardener IMG_0608

Author’s Foreword: Some readers will be relieved to learn that today’s blog does not involve any fiction. The Devil, having been vanquished one more time, has left the building.   Today I explore some ‘niggles’ that go back a very long way, reveal some of my memories of three remarkable women, leave me thirsty for more knowledge and finally, force me to face facts about the life expectancy of Persons with Parkinson’s (PwP.)

Niggles

Have you ever had a little ‘niggle’ in your brain – a thought or thoughts so persistent that you end up spending far too much time and attention to seemingly inconsequential details?  Well, I have. In fact, I have several niggles at the moment. I am not sure what the collective noun for a niggle is, or ought to be. Perhaps it is an ‘annoyance’ or a ‘persistence.’ (See Note 1)  Anne, the person who knows me best (too well I would argue) undoubtedly would affirm that I need no encouragement to pursue the most inconsequential of niggles.

Today, I reveal a few niggles that seem to form a straight line – a rare thing sometimes. I consider none of them to be totally inconsequential but they are hardly breaking news either. This ‘annoyance’ of niggles have been sitting in my mind in various forms for a long time and now, finally, it is time to examine them in the cold hard light of day, as they say.

Regular readers of this blog know that I frequently write about a small community called Altamont in southern Manitoba – a place that I often call home even though in many respects “there is no there, there” anymore as a former colleague is fond of saying. It is probably more accurate to say that it is really a “time and place” that I call “home.” In any case, I carry a few niggles from that time and place and the ones that carry the greatest weight reference one or all of three remarkable individuals. I guess there is no better way to begin than to introduce the first of these three people – a woman who influenced at least three generations of students in Altamont’s school – Miss Mary Armitage.

Mary Isabel Armitage

  • Born: March 12, 1902   New Haven District, Manitoba
  • Died: February 21, 2005, Manitou, Manitoba
  • Taught in Altamont: 1924 to 1962. Lived there most of her life
  • Awards: 1970 Manitoba Centennial Medal for her many years in the teaching profession and her activity in community affairs.

In my last blog on The “Stuff” of Curling I incorporated a highly fictionalized role for Miss Mary Armitage as the neutral arbiter in resolving a matter with the Devil. You will be relieved, I am sure, to know that this piece contains no fiction and no reference to the Devil beyond the fact that the Devil has left the building. However, since I wrote the curling series some particular memories involving Miss Armitage, the erstwhile long time teacher in the Altamont School and my teacher for three years, have re-surfaced.

Where to start? Well, Miss Armitage was my teacher for Grades 1 – 3 and she was the teacher for everyone who attended Grades 1 – 3 at Altamont School for 37 of her 41 years of teaching. There was no kindergarten (junior or senior) so Grade 1 was a very big deal. Come to think about it, there was a very long six-year waiting list to get into the program. Once I got there, I remember liking school well enough in those early grades but there were two or three situations that still niggle.

Mary Armitage

Mary Armitage  Photo: Unknown

Our desks were double desks, intended for two students. The gray painted wooden desktops opened to reveal an unfinished interior cavity into which we thrust our textbooks, foolscap paper, pencils and sometimes lunches and snacks. We were not allowed to write with fountain pens or ballpoint pens until much later. The interior cavity always smelled like… well … like an interior cavity – a mix of wholesome natural fibre goodness and musty, stale fibre badness with just a hint of carrion. Interior cavities seem destined to be the spaces where a process of transformation from goodness to badness happens. In any case, the desktops and seats held together by designer metal desk frameworks would be prized items today.

Gender stuff

I am not certain how many children rested their bums on those seats before I arrived but the evidence indicates that the number was much higher than I could count in Grade 1. While the desk tops and seats had been sanded and painted regularly the evidence of earlier children persisted in the vague outlines of their initials and other personalized scratching.

I was in Grade 2 when Bill and I were assigned to sit together in one of those double desks. By the way, being able to sit with Bill was a huge relief to me because the previous year, on my first day of school in Grade 1, I lined up outside the main entrance to the school with the other Grade 1 pupils and we were ushered into the classroom to sit in our “new” desks. It was a bit scary for a shy young lad and I remember not remembering anything I was supposed to remember and getting into some trouble. It was either just too exciting and I freaked out over the pressure of not knowing what the expectations were, or alternatively, I was just another dumb kid who couldn’t retain anything in his distracted mind. I still haven’t figured out which one is the most apt description of my mind on that day. Okay, maybe some of that state of mind continues today, as I seem to have rambled a bit.

The classroom was large enough (or the class sizes were small enough) that Grades 1 – 3 were all taught in the one room. On that first day of Grade 1, Miss Armitage was careful to segregate us by gender, two boys to a desk and two girls to a desk, as she made seat assignments. I know that many of you are gasping at this arrangement and I fully recognize that in the present day world the class would have been divided into gender equal desks with one boy and one girl per desk promoting a new comfort level and equality between genders. But this was not the case in my early schooling – hey, I didn’t even know the meaning of “gender!”   As it turned out that there were an odd number of boys and girls in the class. Oh no! A boy and a girl would have to share a double desk and (foretelling much of my life, if there was any chance that something would happen to embarrass me, it would happen,) I was one of the chosen. My desk mate was Shirley May.

I hasten to add at this point that Shirley May must have been totally horrified at the prospect – no, reality – of spending the year next to a shy, stinky fellow such as me. In any case I recall her as being a pretty little girl, delightful in every respect. I don’t recall being mean to her in any way but I might have suppressed those memories and if I was mean, I make my apologies now. Equally, I am certain that any embarrassment to me in any other interaction(s) with women over the years is purely coincidental and unrelated to the seat assignations. [And I am not going to pay high figures to a shrink to figure this one out, both literally and figuratively speaking!]

My engraving career

Now, back to Grade 2 where my desk mate was Bill. Not nearly as cute as Shirley May but more my type if you know what I mean. Bill was always Bill and never Billy or William or Willie. Bill was Bill … until he became “Skull” that is. Bill and I sat in that double desk and proceeded to contribute our own pungency to the interior cavity. It’s “nose” might have been described as aged oak with a dark undercurrent of fountain pen ink tinged with fuzzy salami sandwiches capped with blackened bananas. In any case, it was a cavity worthy of commemoration.

Bill and I (mostly me though, I am afraid) proceeded to use some implement – I am not sure what we used but we were as creative as the most hardened lifer in prison when it came to handcrafting shives and other necessities away from the prying eyes of the guard (Miss Armitage) – to carve our initials into the painted desk top. Gasp! Even though Miss Armitage did indeed have eyes in the back of her head, she found it hard to keep those eyes on 35 or so children at once. Or perhaps, she just prioritized. Nevertheless, we were found out of course. Not only was the artistry in plain view but we had signed our work. We were roundly chastised and punishment was meted out. It is funny but I don’t remember exactly what the punishment was. Nonetheless, a lesson learned and this effectively marked the end of my engraving and graffiti career – that and the fact that I never developed an attractive stylized tag line.

The Plasticine Age

But there are more niggles when it comes to Miss Armitage and my own shortcomings. There was an occasion in Grade 1 when Miss Armitage had to step out of the room for a brief moment. It happens, I guess. Is it even a question that the class would take advantage of this unforeseen moment to engage in some tomfoolery?  She was not out of the room more than 10 seconds when erasers and pencils were flying, punches were delivered to the shoulders of our desk mates (but not to my desk mate Shirley May.) I had a long rope of Plasticine rolled out at our desk.  I took the opportunity to twirl it like a lariat and it was then that I learned that Plasticine does not have the physical proprieties of good sisal. In fact, it is a very poor substitute. A chunk of Plastiscine broke loose and flew with great precision into the crockery vessel of the water fountain at the back of the room.

[Note: Plasticine is the trademark name for a type of modelling clay invented over 100 years ago by William Harbutt in England. Artists, engineers, architect, model builders, children and many others use it for various purposes. To my knowledge, lariat making is not one of them. Play dough was not yet in widespread use in schools and Plasticine was often the only option.]

Plasticine

Plasticine, ours was mostly gray. It all ended up gray anyway.

I am not sure who snitched but in a room of 30 or so pupils in Grades 1, 2 and 3 there is a least one snitch, and that one snitch snitched. Well … s/he half – snitched and told Miss Armitage that there was a piece of Plastiscine in the water fountain. Somehow Miss Armitage knew it came from the Grade 1 class and she marched us all back to water fountain and demanded to know who put it in there. It was the most pressure I have ever been under! It haunts me to this very day – maybe this is not just a niggle after all? Maybe I should be on the psychiatrist’s couch trying to interpret my action… well… inaction really. You see, I never owned up to the fact that I tossed my lasso into the water fountain. She repeated the question several times and each time I retreated farther away from the truth. Maybe I was incorrigible. Maybe I couldn’t accept responsibility. Maybe I was embarrassed. No matter, I never let on and no one openly named me. Miss Armitage, probably sensing that there was no useful outcome from this standoff, retreated. Those of you who know me (and for that matter those who don’t know me) will undoubtedly pass some judgment on this showdown at the water fountain. As for me, I have come to terms with the fact that while it is a niggle, it does reveal that I was not as honest as George Washington was about cutting down the cherry tree. But who among us is that honest?

[Note: Now I learn that the cherry tree story about George Washington is a myth invented by Mason Locke Weems, one of Washington’s first biographers. Hmmmm… I think that just means that George Washington and I are equally honest – he (if he were alive) would now deny cutting down the cherry tree just as I did not own up to the Plasticine incident.]

I would like to say that this ancient history from the Plasticine Age is the last niggle about Miss Armitage, but it is not. Somehow, I passed through the lower grades with little further difficulty. I must have kept my nose clean as they say and Miss Armitage must have seen fit to cast a blind eye toward my indiscretions. (I don’t recall that there were any, but let’s be realistic; there likely were a few.) Everything was uneventful until sometime in Grade 4, I believe. In 1958 the Sylvan School merged into the Altamont school and students from Sylvan began attending school in Altamont. The Sylvan schoolhouse was moved and positioned behind our two-story four-room school to create a new ”portable” although it wasn’t called a “portable” in those days. Miss Armitage’s Grades 1 – 3 classes were moved into Sylvan.

Knock a Door Ginger

Sylvan School IMG_5753

Sylvan School before it was moved to Altamont as a “portable.” Photo: Memories of Lorne, 1880 – 1980

I am not sure what got into us but a few of us guys (no girls were involved) decided it would be fun to run up to the side door of Sylvan, knock on the door and then run away, repeatedly. This was a game we often played in Altamont under the cover of darkness. We called it “Knock a Door Ginger.” Why we called it that I am not sure but in retrospect it was appropriate given my red hair. [I have heard it called ”Knicky Knicky Door Bell” in other places.] In any case, the key words here are “under cover of darkness.” We seldom got caught in town because we knew every little nook and cranny within which to hide and every little interstitial space to run through even in the pitch dark. But at school, we hadn’t figured out that the bright, sunny sky and wide-open spaces of the schoolyard did not provide much protection from detection. Indeed, we were detected and apprehended without much difficulty and marched unceremoniously (or maybe it was with great ceremony) up the large wooden staircase of the main school, our shoes making a conspicuously loud “thump, thump, thump,” to the Principal’s desk in his home classroom on the second floor.

I really don’t remember who the other culprits were but I could guess if I had to name them … but I won’t. I am certain that facing the Principal was daunting but I don’t recall much except that time seemed to pass quickly from the reading of the charges, to the pleas from the alleged perpetrators, to the verdict and subsequent sentencing. At the plea stage there was a brief opportunity to offer explanation or other pertinent information. As I recall there was no explanation or information of any pertinence and certainly none with any impertinence. It was a two-part sentence: three whacks of the strap across the palm of the hand administered individually (not so bad, I thought) and an apology to Miss Armitage, delivered individually (Whoo boy! Mortification!) The strap was of no consequence and no further mention of that event need be made here.

On the other hand, the apology to Miss Armitage was one of the more difficult moments of my life – right there with the earlier Plasticine incident. But I knew I wouldn’t be able to duck this one. I am quite sure Miss Armitage was not in favour of corporal punishment so I don’t think she smiled over the meting out of that part of the sentence by the Principal. She was not in attendance at its execution. However, I am quite certain she allowed herself a wry little smile as I exited later after my clumsy, yet sincere, apology about the Knock a Door Ginger incident, in the confines of the Sylvan schoolhouse.

Is that the last niggle involving Miss Armitage? Almost. I can hear you saying, “What?” Please be patient. A little more water has to flow under a few other bridges before we can close out the last niggle about Miss Armitage.

We need to meet a second remarkable individual, Mary Anne (Straube) Scoles – a person who survived and lived to tell of a good life. Aside from gambling she had few vices but she loved Las Vegas and made many trips there over the years. Her son reports that in the wee hours of the morning on a such a trip when she was in her nineties, she was heard to mutter, “I didn’t come to Vegas to sleep!”

MARY ANNE SCOLES (née  STRAUBE)

  • Born: December 25, 1896 at home in Treherne, Manitoba
  • Married: Mike Scoles
  • Died: July 23, 2007 at the Treherne Personal care Home
  • Mother Bridget Straube died from tuberculosis 10 days after Mary Anne’s birth.
  • Father: Joseph Straube

When I was quite young, we would often visit the Scoles’ homestead (1902) farm a few miles north of Altamont just before you made the turn to St. Lupicin. I notice on some maps that this road north from Altamont is named Scoles Road. We never referred to it as such but it makes sense that it would be. Mike Scoles and his wife, Mary Anne, lived there with their four sons (Joe, Jack, Pat and Ted.) I also have this vague recollection that the reason dad would go to the Scoles’ farm was to give someone a haircut and possibly a shave. Perhaps, there was an elder Scoles in residence as well or maybe it was that Mike was a wee bit older than Mary Anne.

I must have been under ten years old as Mike and Mary Anne Scoles retired off the farm in 1960. While I have only snippets of memory about the Scoles’ farm, some things stand out clearly such as the almost secret nature of their farmyard. You had to watch carefully as you searched for the left hand turn into their lane. The brush and trees seemed to be perpetually overgrown, forming a canopy through which you pushed your way to gain admittance to a clearing. It took another second before you noticed the house tucked discreetly into the brush on the right hand side, forcing you to relinquish the idea that this was an abandoned farmyard. Mrs. Scoles always seemed to be there and greeted us openly and kindly – and the oatmeal cookies always met with my approval.

In those days, my father and mother often took Sunday drives weaving their way across the back roads. My mother was seeking some respite from one overly energetic son and one newly arrived daughter. My father, true to the central character traits of the Marshall family, loved to look at the crops, wildflowers and other vegetation, and the natural land forms of the area. A stop at the Scoles’ farm was often on the route. Even after they retired to Treherne, we would sometimes stop at their little house on a Sunday afternoon.

It was apparent that dad and mom were fond of the Scoles’ family. I believe that dad and Joe Scoles were friends of a sort. Joe would arrive on the bus from Winnipeg and Dad often drove him home. I recall dad loved to have discussions with Joe that were more “in depth” than most discussions he had with others.

But the real story in the Scoles’ family is the story of Mary Anne Scoles herself. She weighed a mere 2.5 pounds when she was born on Christmas Day 1896 to Joseph and Bridget Straube. Bridget had tuberculosis and died 10 days later. Remarkably for the time, Mary Anne survived both her small birth weight and the possible complications of the tuberculosis. Perhaps, this survival was facilitated by her parents who were devote in mind and spirit. Bridget and Joseph Straube, after learning of the pregnancy and the risk to their child, travelled by train to the miracle shrine at the Basilica of Sainte-Anne-de-Beaupré near Quebec City (established in 1658) to pray that their child would have a long and healthy life. The Straube’s prayers were answered.

Mary Anne Scoles passages WPG FP

Mary Anne Scoles  Photo: Winnipeg Free Press Passages

Mary Anne was educated in Treherne and Winnipeg but moved to the Scoles’ farm north of Altamont when she married Mike Scoles. I am not certain of the date of their marriage but it was likely around 1918.  They farmed the Scoles’ original homestead at SE 5-6-8 established in 1902 until 1960 when they retired to Treherne. Mike died in 1981.

So, what is niggling me about Mary Anne Scoles? Is it that she lived to be 110 years, 6 months and 28 days old? When she died she was the oldest Canadian living in Canada. This was quite an achievement – especially given her less than weighty entrance into the world! No, that is not what is niggling me although it is related.

I must make one last introduction, meet Jemima (Holliston) Wilson, the third remarkable woman in this story.   She was known to everyone outside of her family as “Aunt ‘Mime.” Within her family circles, she was addressed by her proper title.

Jemima (née Holliston) Wilson aka “Aunt ‘Mime”

  • Born: May 16, 1862 Merrickville, Ontario
  • Died: January 9, 1965 Manitou, Manitoba
  • Married: 1886 in Merrickville to Robert Wilson
  • Robert Wilson died: 1896
  • Father: George Holliston
  • Mother: Catherine (Katie Mussell]

Aunt ‘Mime was an old woman from the time that I first remember her. I know that when we are young we think everyone between 30 and 90 is in the same category of “old.”   But Aunt ‘Mime really was old. My first memories of her are from when I was about five years old and she was nearly 91 years young. In her nineties, she lived independently in a small house at the northwest corner of town almost beside my friends, Kelly and Terry. Often, we would find ourselves over at Aunt ‘Mime’s scrounging a biscuit, or better yet, a slice of fresh baked bread liberally spread with margarine (uncoloured white margarine as its producers and distributors were not permitted, by law, to colour the margarine to protect the dairy industry) and with any kind of luck, some jam. Funny how I didn’t like uncoloured margarine when we had it at home or when local bachelor and retired farmer Ed Bulmer served it up in his little house, but there was just something about Aunt ‘Mime’s bread and margarine that appealed. Maybe it was the ambiance of her kitchen and the smells emanating from her old wood cook stove.

To be clear though, any niggle I have about Aunt ‘Mime has nothing to do with my inherent nature as a child terror or brat. We would never play “Knock a Door Ginger” on Aunt ‘Mime. We just knew that not only was she old, she was ‘special old’ and that particular status of old was enhanced with each passing year. Living independently until one is almost 100 years old is a remarkable achievement indeed. I recall that she was always spry of mind as well as body.

Aunt ‘Mime passed away January 9, 1965 just short of her 103rd birthday. In the course of her lifetime she witnessed major societal changes e.g., the advancement in transportation from horses to stagecoach to horse and buggy to locomotives and trains to trucks and automobiles to airplanes to space travel. Technology in communications grew from pony express and stagecoach to telegraph to radio to television to the beginnings of a wireless Internet age.

Remarkable as the magnitude of these changes may seem, there were other social and political developments that are just as remarkable, not for speed of implementation or for the magnitude of change achieved during a short span of time, but for the tortoise-like speed with which they were introduced and accepted.   Here, I am referring specifically to the introduction of rights of democratic citizenship for women, and racial and ethnic groups. Political and social change involving Canadian women’s suffrage, economic equality and human rights over the 100-year period coinciding with Aunt ‘Mime’s life, and indeed for fifty years after her death, plodded along at a snail’s pace.

Recall that Aunt ‘Mime was born in 1862, five years prior to Canadian Confederation. One niggle I have is really a questioning niggle: What were things like for women in this pioneering time? The answer is not straightforward obviously but I have constructed a timeline set against the milestone markers of the lives of Jemima Wilson, Mary Anne Scoles and Mary Armitage to assist in telling and visualizing  part of the story. (See Appendix I for the detailed timeline.)

Jemima and Robert Wilson IMG_5738

Robert Wilson (1895) a year before his death. Jemima Wilson as a bride in 1886. Photos: Memories of Lorne 1880 – 1980

Jemima Holliston was 24 years old when she married Robert John Wilson (age 28) in 1886 in Merrickville, Ontario. In 1889 they ventured west to join some of the Wilson clan at Plumas, Manitoba before purchasing (See Note 3) a quarter section of land (NW 21-5-8) about one half mile north of what was then called Musselboro.   On November 1, 1891 Mussellboro would become Alta. Station before being renamed officially as Altamont on July 1, 1894.

Homesteading

Unfortunately, Jemima’s husband died in 1896 from causes of which I am not entirely clear. When working from secondary sources it is best not to ascribe accuracy to data or to jump to conclusions too quickly. I prefer to have two or three unrelated sources to corroborate the data before proceeding tentatively. Consequently, I have not been able to verify the cause of Robert Wilson’s death but I am certain that it was tragic as he was only 38 years old at the time. Nevertheless, Jemima at age 34 had to carry on and she applied to homestead the NE quarter of 21-5-8 in 1898. The question is: how was she able to do manage this?

At the time, there was very little legal protection for women under British common law and married women could not own property. Indeed, in 1885 the Manitoba government actually eliminated the need for the wife’s permission before a husband could sell or give away farmland. Even so, the Dominion Land Act (1872) had created a Homestead Act where for a fee of $10.00 a person could claim a quarter section (160 acres) of land provided that the homesteader would establish a permanent residence and reside on the land for at least six months of the year, breaking 40 acres over three years. A second adjacent quarter costing $2.00 or $2.50 per acre, could be reserved for a total of a half section or 320 acres.

Fortunately for the widowed Jemima (if one can be fortunate in such a situation) the Act allowed widows, divorced women and separated wives with children under 18 to homestead land although married women were prohibited from doing so. As I review the facts, she was one of the few women pioneers who had her name on title of a homestead quarter section near Altamont.  Martha Castle (of whom I know nothing) is also listed as homesteading NE 22-5-8 (1893) about a mile to the east of Jemima Wilson. They are the only two women owning property (both homesteaders) in that particular Range of the Township. They may have benefited from this little bit of ”good” fortune, but these women, with no husbands, must have found it challenging to say the least in a world designed in general to favour men and to discriminate against women. And homesteading was no easy challenge for anyone, man or woman.

At the time of her husband’s death in 1896 Jemima was 34 years old and raising five children who were twelve years of age and under, (her husband’s niece Sarah Evelina Rathwell b. 1884 in Merrickville; Howard Franklin b. 1888 in Merrickville; Mabel Winifred b. 1890 in Altamont; Mary Edith b. 1893 in Altamont; John Robert b. 1895 in Altamont.) I wager this must have presented a daunting future and undoubtedly speaks to the resourcefulness and tenacity of her personality and the strength of her spirit.

Her grandson Gordon credits the support of her kin and neighbours as being critical to survival for Jemima and her children. In addition, the entire area was being settled and immigrants from France, Brittany and Normandy arrived to farm near St. Lupicin, a few miles to the north. She made friends with many of these families and they exchanged goods as need be. Jemima and her children benefited from bread baked in the French tradition and in return she provided an indoor haven from the elements when the St. Lupicin families walked past her farm in all weather conditions on their way to St. Leon for church services.

Aunt ‘Mime farmed the original homestead until 1925 when her son, John (“Jack”) Robert, returned with his wife, Eva Lyle and family to work the farm. Aunt ‘Mime moved into a small house in Altamont soon after. The farm served as a base from where Jack worked at different jobs in mining and construction in Northern Ontario, and trucking and grain handling around Altamont. In 1964 at age 69 and just before Aunt ‘Mime passed away, Jack retired and his son Glen took over the farm. Jack and Eva raised seven sons and one daughter on the original homestead

I have only just scratched the surface of Jemima’s life. I have written this piece very much as a personal retrospective reliant upon my own memories and secondary source material. As such, I do not have (nor have I asked for) access to papers or documents or other original communications that provide insight on social, political or economic life from Jemima Wilson’s perspective. This blog piece was not conceived originally to be a research piece. But I am getting ahead of myself as usual.

Final niggles about three women

I have some final niggles, about Aunt ‘Mime, Mary Anne Scoles and Mary Armitage – ones that stem from my curiosity being piqued as to what the three of them would say (individually and collectively) if they were asked to participate in a discussion (the three of them) about their lives, their experiences and their views regarding  technological, social and political changes over their collective lifetimes. Mary Anne Scoles and Mary Armitage were more closely contemporaries and Aunt ‘Mime was the elder pioneer, so to speak. It almost makes me shiver to think of the richness of such discourse.

The first niggle is that it would be amazing to have the opportunity to interview Jemima Wilson, Mary Anne Scoles, and Mary Armitage – individually or ensemble. I have so many questions I would like to ask. Impossible I know. Aunt ‘Mime died in 1965; Mary Armitage in 2005; Mary Anne Scoles in 2007.

The second niggle is to be able to have access to original documentation from these three remarkable women such that we could understand their perspectives on surviving as women in those times, and their thoughts on the social, economic and political directions that were unfolding around them. Who knows? Perhaps in the future I will be fortunate enough to access such documents or accounts. Or perhaps someone else will have the good fortune to do so. I hope so.

The third and biggest niggle

Map Altamont red dots 2 IMG_0184

Mary Armitage lived in Altamont; Jemima Wilson farmed 1/2 mile north; Mary Anne Scoles farmed about 4 miles north. Red dots indicate the locations.

But the biggest niggle I have is that these three Manitoba centenarians resided for a large portion their lives on a 4-mile straight line of each other. And I knew each of them – not as a close family member would have, or even as a close friend would have, but well enough to have personal memories. I find this astounding. I asked earlier: How many of us can say we have ever known someone who lived to be 100 years old? Not that many, I wager. How many can say that they have very personal memories and ‘niggles’ about three such remarkable individuals? Not that many I wager, but I am one.

Three roses for three prairie women

As we come marching, marching, we bring the greater days.
The rising of the women means the rising of the race.
No more the drudge and idler—ten that toil where one reposes,
But a sharing of life’s glories: Bread and roses! Bread and roses!  – 4th  verse Bread and Roses, lyrics by James Oppenheim, circa 1911.

I have no reason to believe that Jemima Wilson, Mary Anne Scoles or Mary Armitage would have supported trade unions as the political vehicle for achieving women’s democratic rights, economic security and equality. After all, Jemima was born in and grew up in Merrickville in the heart of conservative Ontario. Mary Anne Scoles and Mary Armitage were born in and grew up in the heart of conservative Manitoba. Still, I believe that they would agree that the goals of the women’s movement were worthy of the struggle and would have counted themselves as part of the wave of women who fought not only for bread but for roses in the 19th and 20th Centuries.

Just for fun, I have chosen three roses that I think are appropriate to accompany these three remarkable Manitoba women in this story.

1) Adelaide Hoodless

Adelaide Hoodless (February 27, 1857 – February 26, 1910) worked, after the death of her young son, to reform education for new mothers to include hygiene, cleanliness and frugality. Hoodless is credited with being the co-founder of the Women’s Institute, the National Council of Women, the Victorian Order of Nurses, and the YWCA in Canada. Her educational reforms led to the formation of faculties of Household Science (later called Home Economics and then Human Ecology or Family Studies.) The proof of the magnitude of her legacy is in the fact that these organizations still exist today.

hoodless1

Adelaide Hoodless (Dr. Henry Heard Marshall, 1972)  Photo: unknown

The rose, Adelaide Hoodless, is a very vigorous shrub introduced in 1973 by Dr. Henry Heard Marshall as a tribute to the founder of the Women’s Institute on the occasion of the 75th anniversary of the Institute.

2) Morden Centennial was introduced by Dr. Henry Heard Marshall in 1980 to commemorate the centennial anniversary of the Town of Morden, Manitoba. It seems appropriate to include it here as each of the three women in this story lived to be more than 100 years old and Morden is a near neighbour to Altamont in modern day terms. Morden Centennial is one of my personal favourites and we have it as a mainstay in our garden. It flowers repeatedly throughout the summer with amazing, almost florescent flowers.

Centennial IMG_0426

Morden Centennial (Dr. Henry Heard Marshall 1980) Photo: The PD Gardener 2013

3) The Manitoba countryside is dotted with patches of wild roses (Rosa woodsii, Rosa acicularis or Rosa arkansana) with their prickly branches catching your clothes as you scramble through the fence line on your way through a “shortcut” from one place to another. The three heroines in this story would be attracted to the mass of flowers on display and the simplicity in the structure of each blossom. The complexity of hybridized roses we know today was not only far into the future but would have been out of budget range and practicality for someone like Jemima Wilson and Mary Anne Scoles for certain and likely for Mary Armitage as well.

Wild roses though live on in unlikely spots around the prairies and the three women I have highlighted today exemplify their beauty and tenacity.

Wild rose cwf -300px

Wild Rose  Photo: Canadian Wildlife Federation

 Life Expectancy: The dash of cold, hard reality

As I said, I have had the privilege of having personal memories of three quite remarkable women who each lived to be more than 100 years old. Of course, this inevitably leads to the question: can I expect to live to be 100 years old?

It seems that the average age of the population is on a slow but steady increase. Each generation can expect to live longer than the previous one. Technological advances in medical diagnostic equipment; improved and more efficacious drug therapies; improved medical devices enabling us to have a better quality of life; a better understanding that ‘quality of life’ really means attention to the wholeness of body, mind and spirit;  mutually supportive relationships with family and friends; and social participation in community life along with respect for Nature, have all contributed to positive outcomes. Still, the challenge will be to continue the trend to increased longevity.

But, can I expect to live to be 100 years old? The short answer (also called the realistic answer and the pessimistic answer) is “no.” The equivocating answer is “not likely.” The cheer leading, supportive, optimistic and the ‘you are a fighter’ answer is “of course we can live even longer.” My answer is that we need all of these answers to support us, as the occasion demands.

In Canada only 0.8% of the population is over 90 years of age (0.4 % for males and 1.1% for women.) So, how many of us will ever get to say, “I am 100 years old?” Becoming a centenarian is really quite an exclusive club. In 2011, there were only 5,825 people in Canada who were 100 years of age old or older and for this year (2016) it is estimated that 7,900 people, more women than men, will be in that illustrious group. As I write this post, the oldest Canadian living in Canada is Ellen “Dolly” Gibb of North Bay, born Ellen Box in Winnipeg on April 26, 1905. She is 110 years 351 days.

So, I ask the question again, slightly differently this time: What is the probability that I will live to be 100 years old and would I bet on the outcome?  Silly me, when it comes to my own life, I am betting on the outcome every minute of every day. I am betting I will live. I know there is a way to calculate that probability but in the end that is a matter for actuaries and gamblers. I am sure that this is a gross oversimplification of what actuaries do but they make estimates of probable outcomes using available relevant data, extrapolating from past patterns. In order to do that, they have to make assumptions. Believe it or not, I have participated in some extremely interesting debates and arguments on these assumptions in real life collective bargaining situations. I guess it wouldn’t surprise you that actuaries are mostly quite conservative in their assumptions and their estimates. On life expectancy they know, quite correctly, that you will die, and they will assume that you will die sooner rather than later but later than others died previously, if you know what I mean. They are pessimistic in an optimistic kind of way – you might say they see the glass as being half full except for the fact that they know that for any given individual, the glass will be bone dry empty at some point.

Gamblers, the good ones at least, employ much the same fundamental process. They look at the available information and make some informed choice (educated guess) as to the outcome of an event e.g., Smarty Jones to win the Kentucky Derby in 2004 (he did) or the North Carolina Tar Heels (2.5 point betting favourites) to win the 2016 NCAA Championship – they didn’t as they were upset by the Villanova Wildcats. You can gamble on anything e.g., lottery tickets (the odds are very high against winning the big prize) or whether the next child born to the Royal family is a boy or a girl, or whether it will rain in Birmingham, Alabama on October 21, 2016. I haven’t actually checked this last one out but I am sure you can find a bookie somewhere who will take that bet, one way or the other. For the record, it did not rain in Birmingham on October 21, 2015 and that day was the 11th day of a long dry spell.

Okay then. So both actuaries and gamblers will agree that I will die. But if they are betting on when I will die (the actuary because she works for a life insurance company and the gambler because he has a gambling addiction and will bet on anything if someone will take the bet and give him odds,) they will want more information. Life expectancy is one such piece of information. And because I have Parkinson’s disease they will want to know if the life expectancy for someone who has Parkinson’s is different from someone who does not have Parkinson’s.

Life expectancy with Parkinson’s disease

Put most bluntly, if I have Parkinson’s disease, is my life expectancy shortened? Well, theoretically a Person with Parkinson’s (PwP) can live a good long life after diagnosis. As Parkinson Canada says

Depending upon your age of onset, how you manage the symptoms, and your general health, you can live an active life with Parkinson’s. In most cases, one’s life is not shortened. However, as you age and as the disease progresses, there will be increased risks. For example, impaired balance can lead to falls; swallowing problems, if not managed, can lead to pneumonia. Parkinson’s is known as a chronic (long term) condition that will require ongoing monitoring and management to maintain one’s quality of life.

It seems that the best that can be said is that whether you have Parkinson’s or not, there are always risks in life, aren’t there? In other words, there are many variables and while having Parkinson’s is just one such variable, it is a variable that brings more associated risks with it. Doesn’t that mean that your life expectancy is decreased, or put another way, the probability of dying increases? It seems to me that it does. I wish it didn’t, but it does. So, let’s not beat around the bush.

cards stacked against IMG_5773

How badly are the cards stacked against me? Photo: The PD Gardener

But don’t misunderstand; it is not defeatist to say that I am in a higher risk group. It would be defeatist though if I were to say that I am no longer going to strive to live as healthy and as long a life as I possibly can, just because I am in a higher risk group. I do not mean to say that anyone living with Parkinson’s should not try to achieve the best quality of life possible. It is at this point that we need the cheerleader to jump in (Zis, Boom, Bah – Two, four, six, eight; who do we REALLY hate? Parkinson’s, Parkinson’s, Go PwP!)

I am not going to get hung up on semantics or matters of definition here. I believe that because I have Parkinson’s, my life expectancy is lower. Empirical research seems to support my position.

The calculations showed that LE (Life Expectancy) and AAD (anticipated age at time of death) in PD are reduced for all onset ages but this reduction is greatest in individuals with a young onset. (See Note 3)

Similarly,

Our findings confirm that PD is associated with increased mortality in both men and women. Unlike the majority of other mortality studies, we found that women have a greater reduction in lifespan compared to men. We also found that patients with early onset PD (onset at the age of 50 or before) have reduced survival relative to PD patients with later ages of onset. A final important finding is that survival is equal in PD patients treated with levodopa early (within 2 years or less of PD onset) versus later. (See Note 4)

However, the good news is that if you have Parkinson’s and do not have dementia and are not in the young onset group, life expectancy and age at time of death are more likely to approach that of the normal population.

The survival, LE and AAD in patients with PD are much lower compared with the general population, apart from those patients who do not develop dementia, who appear to have near normal population mortalities. However, dementia and younger onset of PD appear to be important determinants of survival, LE and AAD. (See Note 5)

So, there is a bit of good with the bad … but not that much.  Is there anything to be done except be depressed? Of course there is!  We have to get on with the task of living.

We need to be careful not to assume that each of us will follow precisely the same pattern. Probabilities are probabilities because they are not certainties. A tautological argument sure but no one can accurately predict when any given individual will die under normal circumstances or even under circumstances where the individual has Parkinson’s. The wonderful thing about statistics is that there will always be a mean or an average (it keeps shifting as the population changes and there will always be people who are far away from the mean.) Yes, I know this means both to the negative and to the positive sides. Some people will live longer than expected and some people will not live as long as expected. These facts will never change. Our challenge is to do everything we possibly can to shift the statistical result to the positive for our own individual selves.

Think of Mary Anne Scoles who, in 1896 in a home birth, survived her low birth weight (2.5 pounds) and the fact that her mother had tuberculosis. How high would the odds have to be for you (assuming you could live long enough to collect) to bet that she would live to be 110 years, 6 months and 28 days old?  But she did. I can’t help but wonder how successful she was in her Las Vegas trips, and if she would have lived longer if she slept more in Las Vegas? I doubt it. Fun is a key criterion for longevity – at least I am betting that it is!

In some ways we must be selfish. Treat each day as a personal best and do whatever is necessary to reach the new personal best tomorrow.

When I die, no matter how or how soon, I fervently want my family and friends and those who knew me in any capacity to understand that my passing will not be a personal failure but merely the end of a long stretch of personal bests. On the statistical side, when I die I hope that my string of personal bests will have pushed (however slightly) the overall average or mean upward and that I have left some mark on the world to assist others to reach and surpass my goals, setting their own high watermarks. At the macro economic, social and political levels, the capacity of all systems, (economy, heath care, social security, social policy, political advocacy, etc.) must be strengthened and expanded to support an enhanced quality of life for Persons with Parkinson’s, their families and caregivers.

And, finally: No, I am not depressed.

APPENDIX I

Timeline of Women’s Rights in Canada referencing the Lives of Three Remarkable Women: Jemima (née Holliston) Wilson aka Aunt ‘Mime , Mary Anne (née Straube) Scoles, and Mary Armitage

1862 Jemima Holliston is born

1867 Jemima Holliston is 5

  • Canadian Confederation

1871 Jemima Holliston is 9

  • Manitoba’s Act Respecting Married Women allows a married woman to keep ownership of her property, but any wages she makes goes to her spouse.

1872 Jemima Holliston is 10

  • Dominion Land Act and Homestead Act is passed entitling a person to claim, for a $10.00 fee, a quarter section (160 acres) on even numbered sections provided that the homesteader reside on the land for at least six months of the year, establish a permanent residence and break 40 acres over three years. A second adjacent quarter costing $2.00 or $2.50 per acre, could be reserved for a total of a half section or 320 acres.

1884 Jemima Holliston is 22

  • The Married Women’s Property Act gives married women in Ontario the right to make legal agreements and buy property, the same as for men.
  • Women in Manitoba gain the right to vote in municipal elections but are not eligible to run for municipal office until 1917. This is one small step forward with a more than offsetting large step backward.

1886 Jemima Holliston is 26 and marries Robert John Wilson in Merrickville, Ontario

1890 – 1920 Jemima Wilson is 28 – 58

  • This is a period of intense activity by the Suffrage movement. Women such as Emily Murphy, Nellie McClung, Irene Parlby, Henrietta Muir Edwards and Louise Crummy McKinney (the “Famous Five”) as well as Agnes MacPhail, Erland Lee, Adelaide Hunter Hoodless among others were active advocates for women’s Suffrage and other rights.

1890 Jemima Wilson is 28

  • Women ratepayers in Manitoba can vote and hold office at the school board level.

1896 Jemima Wilson is 34. Mary Anne Straube is born in Treherne, Manitoba

  • Jemima Wilson’s husband, Robert John Wilson, dies.

1898 Jemima Wilson is 36. Mary Anne Straube is 2.

  •  Jemima Wilson applies for a homestead on NW 21-5-8 north of Altamont.

1900 Jemima Wilson is 38; Mary Anne Straube is 4.

  • Manitoba passes its own Married Women’s Property Act giving married women in Manitoba the same legal capacity as men. [See Note 6]

1902 Mary Armitage is born

  • The Scoles’ homestead was established at SE 5-6-8.

1908 Mary Armitage’s family moves to Altamont from New Haven. Mary (6) is the second oldest of 4 children. Five other children are born after moving to Altamont.

1914 – 1918 Jemima Wilson was 52 – 56; Mary Anne Straube was 18 – 22; Mary Armitage was 12 – 16

  • World War I

1917 Jemima Wilson is 55; Mary Anne Straube is 21; Mary Armitage is 15;

  • The Military Voters Act allowed nurses and women in the armed services to vote.
  • The Wartime Election Act extended the vote to women who had husbands, sons or fathers serving overseas.
  • Women in Manitoba are the first in Canada to gain the right to vote and run for office in provincial elections.

~ 1918 Mary Anne Straube marries Mike Scoles

1920 Jemima Wilson is 58; Mary Anne Scoles is 24; Mary Armitage is 18

  • Dominion Elections Act is amended permitting every eligible Canadian over 21, male or female, to vote in federal elections, excluding Aboriginal peoples, Inuit or anyone barred from a provincial voters’ list, including Asians and Hindus.

1924 Mary Armitage age 22 begins teaching in Altamont, Manitoba

1929 Jemima Wilson is 67; Mary Anne Scoles is 33; Mary Armitage is 27;

  • The Judicial Committee of the Privy Council in England overturns a decision of the Canadian Supreme Court’s “Persons” case and recognizes Canadian women as persons under the law.

1930 Jemima Wilson is 68; Mary Anne Scoles is 34; Mary Armitage is 28

  • Montreal’s Cairine Reay Wilson becomes the first woman appointed to the Senate.

1939 – 1945 Jemima Wilson is 77 – 83; Mary Anne Scoles is 43 – 49; Mary Armitage is 37 – 43

  • World War II

1940 Jemima Wilson is 78; Mary Anne Scoles is 44; Mary Armitage is 38.

  • Women in Quebec gain the right to vote through The Act Granting to Women the Right to Vote and to be Eligible as Candidates – the last existing province to make it legal for women to vote and run for office. However, women from a racial minority already banned from voting in other provinces are still disenfranchised.

1948 Jemima Wilson is 86; Mary Anne Scoles is 52; Mary Armitage is 46;

  • A parliamentary committee recommends that Aboriginal people receive the vote, and Inuit are enfranchised. First Nations refused the right to vote as it was conditional on their relinquishing both status under the Indian Act and tax exemption rights accorded by treaty.

1950 – 1960 Jemima Wilson is 88 – 98; Mary Anne Scoles is 54 – 64;   Mary Armitage is 48 – 58

  • Fair wages, equal pay and fair employment practices legislation begins to be implemented in various provinces

1960 Jemima Wilson is 98; Mary Anne Scoles is 64; Mary Armitage is 58.

 

  • Mary Anne Scoles and husband Mike retire off the farm to live in Treherne
  • Canada’s Aboriginal Peoples, including Aboriginal women, are finally granted a ‘no-strings-attached’ right to vote.
  • The Canadian Bill of Rights receives Royal Assent

1962 Mary Armitage age 60 retires from her teaching career in Altamont

1965 Jemima Wilson dies a few months short of her 103rd birthday

1969 Jemima Wilson died 4 years earlier; Mary Anne Scoles is 73; Mary Armitage is 67

  • Québec became the final province to grant its Aboriginal residents the vote, Canada was no longer denying voting rights to anyone on the basis of racial or ethnic criteria.

1970 Jemima Wilson died 5 years earlier; Mary Anne Scoles is 74

  • Mary Armitage age 68 awarded the Manitoba Centennial Medal for her many years in the teaching profession and her activity in community affairs.

 

 

 

1982 Jemima Wilson died 17 years earlier; Mary Anne Scoles is 86; Mary Armitage is 80

  • The Canadian Charter of Rights and Freedoms is enacted as part of the Constitution Act.

1984 Jemima Wilson died 19 years earlier; Mary Anne Scoles is 88; Mary Armitage is 82.

  • 100th Anniversary of the founding of the Mussellboro Post Office, the predecessor of Altamont.

1986 Jemima Wilson died 21 years earlier; Mary Anne Scoles is 90; Mary Armitage is 84

  • The Federal Employment Equity Act is passed.

1992 Jemima Wilson died 27 years earlier; Mary Anne Scoles is 96; Mary Armitage is 90

  • Canadian Roberta Bondar flew in the Space Shuttle Discovery

1993

  • Conservative Kim Campbell becomes the first Canadian female prime minister, for about four months

2000 Jemima Wilson died 35 years earlier; Mary Anne Scoles is 104; Mary Armitage is 98

  • Beverley McLachlin appointed Chief Justice of the Supreme Court

2004 Jemima Wilson died 39 years earlier; Mary Anne Scoles is 108; Mary Armitage is 102

  • Rosalie Abella appointed as the first Jewish woman to sit on the Supreme Court.

2005 Jemima Wilson died 40 years earlier; Mary Anne Scoles is 109; Mary Armitage dies at age 102 years, 344 days

  • Canada became the fourth country in the world to legalize same-sex marriage nationwide with the enactment of the Civil Marriage Act

2007 Mary Anne (Straube) Scoles dies at age 110 years, 245 days – the oldest documented Canadian living in Canada at that time.

2010 Jemima Wilson died 50 years earlier; Mary Anne Scoles died 3 years earlier; Mary Armitage died 5 years earlier

  • Women in Canada still earn only 75% of what men earn in full and part time employment.

2016 April 2016

  • Jemima Wilson died 51 years ago. She would be 151 years old this year
  • Mary Anne Scoles died 9 years ago. She would be 119 years old this year.
  • Mary Armitage died 11 years ago. She would be 114 years old this year
  • 100-year anniversary of Manitoba granting women the right to vote in provincial elections
  • Employment equity, pay equity and fundamental human rights for women remain as major issues in Canadian and world affairs.

NOTES

  1. The word “niggle” has several different connotations. My preferred meaning is  “a small minor concern usually over a long period of time, or a slight feeling of misgiving.” However, it can also mean
  • Spend too much time on inconsequential details (Dictionary.com)
  • Spend too much effort on minor details (Miriam Webster)
  • Give too much attention to details usually over a long period of time (Cambridge)
  • Find fault continually or to be preoccupied with details (Collins English)
  • Cause slight but persistent annoyance (Oxford)
  • Screw someone or weasel your way into something (slang – Urban Dictionary

2. In the context of this blog, I would rule out this last definition. I do not have sufficient corroborating evidence to confirm that Robert and Jemima Wilson purchased the NW quarter of 21-5-8 in 1889. One map of Township 5 Range 8 shows James A. Fraser as the owner of NE 21-5-8 (1880.) It may be the case that the sale of this land to Robert and Jemima Wilson was just not noted on this map as there are some oddities in the manner in which names were recorded e.g., they only note the name of the first person to purchase the land from the Crown or Hudson Bay Company, or CPR, etc. Henry Mussell is listed as the owner of SE 21-5-8 (homestead 1879) and SW 21-5-8 (purchased in 1884.)

3. Lianna S Ishihara, Anne Cheesbrough, Carol Brayne, and Anette Schrag, “ Estimated life expectancy of Parkinson’s patients compared with the UK population,” J Neurol Neurosurg Psychiatry. 2007 Dec; 78(12): 1304–1309. Published online 2007 Mar 3 http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2095626/

4. John C. Morgan, Lillian J. Currie, Madaline B. Harrison, James P. Bennett Jr., Joel M. Trugman, and G. Frederick Wooten “Mortality in Levodopa-Treated Parkinson’s Disease,” Parkinson’s Disease, Volume 2014 (2014), Article ID 426976, 8 pages http://dx.doi.org/10.1155/2014/426976

5. Hobson P1, Meara J, Ishihara-Paul L. J Neurol Neurosurg Psychiatry. 2010 Oct;81(10):1093-8. doi: 10.1136/jnnp.2009.198689. Epub 2010 Jun 22. “The estimated life expectancy in a community cohort of Parkinson’s disease patients with and without dementia, compared with the UK population.” http://www.ncbi.nlm.nih.gov/pubmed/20571039

6. The Married Women’s Property Act [1900] gives married women in Manitoba the same legal capacity as men. Previously, a woman living in Manitoba lost most of her legal rights respecting property when she married. All her property, for example, became legally vested in her husband. The Married Women’s Property Act allows a wife to own her own property separately from her husband and to control her own wages and profits. She is also jointly responsible for the support of their children. (Nellie McClung Foundation)

SOURCES:

Adelaide Hunter Hoodless Homestead http://www.adelaidehoodless.ca/

Agriculture Canada, Winter-Hardy Roses from Agriculture Canada, publication 1891/E

Canada: A Country by Consent http://www.canadahistoryproject.ca/index.html

Catalyst http://www.catalyst.org/knowledge/womens-earnings-and-income

Morris Deveson, The History of Agriculture in Manitoba (1812-2007) October 2007 http://www.manitobaaghalloffame.com/history2.php

The Dominion Land Act, http://manitobia.ca/content/en/themes/ias/6

Folk Archive  http://www.folkarchive.de/breadrose.html

Friesen, “Expansion of Settlement in Manitoba, 1870 – 1900” Manitoba Historical Society, Series 3, 1963 – 1964 season. http://www.mhs.mb.ca/docs/transactions/3/settlementexpansion.shtml

Histori.ca Voices, http://www.histori.ca/voices/page.do?pageID=316

Hobson P1, Meara J, Ishihara-Paul L. J Neurol Neurosurg Psychiatry. 2010 Oct;81(10):1093-8. doi: 10.1136/jnnp.2009.198689. Epub 2010 Jun 22. “The estimated life expectancy in a community cohort of Parkinson’s disease patients with and without dementia, compared with the UK population.” http://www.ncbi.nlm.nih.gov/pubmed/20571039

Lianna S Ishihara, Anne Cheesbrough, Carol Brayne, and Anette Schrag, “ Estimated life expectancy of Parkinson’s patients compared with the UK population,” J Neurol Neurosurg Psychiatry. 2007 Dec; 78(12): 1304–1309. Published online 2007 Mar 30. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2095626/

Manitoba Digital Resources on Manitoba History “Immigration and Settlement 1879 – 1919” and “Women in the West.” http://manitobia.ca/content/en/themes/ias/6

John C. Morgan, Lillian J. Currie, Madaline B. Harrison, James P. Bennett Jr., Joel M. Trugman, and G. Frederick Wooten “Mortality in Levodopa-Treated Parkinson’s Disease,” Parkinson’s Disease Volume 2014 (2014), Article ID 426976, 8 pages http://dx.doi.org/10.1155/2014/426976

The Nellie McClung Foundation, “Canadian History of Women’s Rights” http://www.ournellie.com/womens-suffrage/canadian-history-of-womens-rights/

Parkinson Canada http://www.parkinson.ca/site/c.kgLNIWODKpF/b.5000693/k.812F/Progression_of_Parkinsons.htm

Kirsten Smith, Women in history: A timeline, Postmedia News March 3, 2011 http://www.canada.com/technology/Women+history+timeline/4367539/story.html

George Washington’s Mount Vernon, Digital Encyclopaedia http://www.mountvernon.org/digital-encyclopedia/article/cherry-tree-myth/

Wikipedia, List of Canadian Supercentenarians  https://en.wikipedia.org/wiki/List_of_Canadian_supercentenarians#Living_Canadian_supercentenarians

Winnipeg Free Press http://passages.winnipegfreepress.com/passage-details/id-122676/name-Mary_Scoles/

© Stan Marshall (The PD Gardener) 2016

 

 

 

 

 

Death, Souls, Parkinson’s and other Strangeness

Death, Souls, Parkinson’s and other Strangeness

Preface

I am writing about death today, which means that this post veers wildly and widely across a spectrum of fact, truth, myth, and mystery. What follows is a grab bag of stories and memories along with some scientific and philosophical musings about the very thing we do not want to remember, think about, or recount. Throw in some scientific “facts” and a few life experiences about Parkinson’s and you have a complexity that cannot be dealt with as concisely as you might think. In other words, this is a long piece so make yourself some tea or coffee, a salad and/or a sandwich and set aside some time for a journey that may prove to be funny, enlightening, frustrating or all three. I guarantee it will at least make you think.

Can Parkies talk about death? 

Some time ago my friend, Anne, asked me what I was thinking about covering next in my blog. I hesitated before answering because I was thinking of writing about “death” and usually there is no way for a Person with Parkinson’s (PwP) to broach this topic without at least some inferences being drawn. But I hesitated for another reason as well. Anne’s husband Tom Jokinen wrote a very informative and wonderfully humorous book on the funeral industry from a perspective as inside as it can get without it actually coming from inside the casket, the crematorium or the ‘great beyond.’ The title Curtains pretty much says it all, capturing finality but leaving room for a curtain call and perhaps…. an encore?

In any case, part of my hesitation to reveal my thoughts was out of respect for both Anne and Tom who must have had a torrid and intimate relationship with death and dying from the moment Curtains was conceived until it was launched. They had undoubtedly explored death to depths that I cannot fathom. I do not want to convey the impression that I understand death. I don’t and I am concerned that my ignorance may diminish the very concept of death for readers who are far more erudite on the matter than I am. That said, I press on unbidden.

The first thing I need to do is to get one major inference out of the way. We have all thought about death. It is part of life and we have all had death in our lives. It can be painful, physically and emotionally. It can also be a release, or a relief, when death is a vehicle that transports pain and suffering to another plane. It is often assumed that PwP, wracked with the pain and psychological battering that a progressively neurodegenerative disease places on our bodies and psyches, wish to hasten the arrival of death. Ergo any mention of “death,” at any time after diagnosis, sends our loved ones and friends scurrying to find counsellors (psychologists and psychiatrists primarily) to divert us from death’s door. They are always on the alert for early warning signs. We PwP have to love them for their concern, but sometimes “a good cigar is just a good cigar” or “it is what it is.” Discussing death does not mean we crave it. And PwP can be as serious, or as flippant, about death as anyone else. We have that right.

In fact, Scottish comedian and entertainer Billy Connelly recently commented about his own diagnosis of Parkinson’s and the diagnosis and subsequent suicide of his good friend Robin Williams by saying that he is not afraid of dying, “It has never crossed my mind that I am gonna die. What is dying anyway? It is just a light going out?”

What I find most interesting about Connelly’s comment is not that he is unafraid of death but that there is a question mark at the end of the sentence about dying being like a light going out. Well, is it? Is it just like a light going out? And does this imply that it has gone out forever or is it like electricity and can be switched on again? Before I started writing this piece, I was adamant that extinguishing a Life Force is permanent and a Life Force cannot be re-established in its previous material form. When you are dead, you are dead. Seems self-evident. Unless of course, you are a young lad playing “cowboys and Indians” [yes, political incorrectness ran rampant in my youth] or the more politically correct “cops and robbers.” You could be shot dead many times and always experience a miraculous re-birth in your previous body and identity by counting to 20 (or ten if you weren’t old enough to count to 20) or by shouting loudly for all to hear, “you only grazed me!” And the game continued.

It is likely not the best idea in the world to use popular culture as a philosophical foundation to carry you through life, but let’s assume for a crazy minute that you wanted to do that. In 1986 The Smiths song, There is a Light that Never Goes Out, describes being broadsided by a double decker bus as “such a heavenly way to die” and that if a ten-ton truck killed us both then, “To die by your side / Well the pleasure, the privilege is mine” culminating with the final line repeating “There is a light and it never goes out.” So, is there a light or not a light? Does it go out or does it stay on?

But let’s back up a few years before The Smiths to the mid-1960s when the notion of an integral relationship between death and birth was reinforced intentionally or unintentionally by Laura Nyro’s lyrics to And When I Die originally released in 1966 by Peter, Paul and Mary and recorded by Nyro herself in 1967.   But it was the cover by Blood, Sweat and Tears that made this song wildly popular when they rode it to Number 2 in the charts in 1969. The opening line professed that “I’m not scared of dying” as preparatory reassurance that all will be well, and the chorus provided comfort that the human race would survive in perpetuity albeit with no population growth. We are replaced when we die although not necessarily in identical materiality or spirituality.

And when I die, and when I’m gone
There’ll be, one child born
In this world
To carry on, to carry on

What more could we ask for?  As it turns out, we have already asked for a lot more. It seems that humans have spent inordinate amounts of time and energy trying to understand and explain life and death, and what it means to us. In popular culture there are literally tens of thousands of songs, books, plays, and poems written about death. The one song that hits the top of most lists about death is ‘(Don’t Fear) The Reaper’ by Blue Oyster Cult 1976. If we include television programs and social media then the total is pushed nearly to the limits of human comprehension. It is almost too terrifying to think about systematically analyzing death, as it seems to be massively overexposed, overrated and …. misunderstood.

But this brings us back to my friend Anne’s question of what I would write about in this blog and my tentative answer, “death.”   Because Anne is a thoughtful and generous person and because of the nature of Tom’s book, not to mention the fact that they were moving and needed to ditch cargo, she offered to drop off a box of books on death and dying. True to her word she arrived a week or so later with a selection of titles I could hardly wait to peruse. Mortality, Immortality and Other Life Strategies instantly made me laugh out loud and was included on my list of books to take to the cottage. I have to confess though that it is quite stodgy and academic. Searching for immortality doesn’t seem to be half as much fun as it could be. I am resisting for the moment the temptation to write a parody.

A book of scripts for the Marx Brothers movies: Monkey Business, Duck Soup, and A Day at the Races, probably met the death criterion on the basis of the introductory note by Ken French which addresses comedy and suicide in Woody Allan as well as the likelihood that the famous Marx Brothers provided comic relief for those suffering the ravages of the Great Depression. Or perhaps it is in the grouping because of this exchange between Mrs. Teasdale and Firefly (Groucho) in Duck Soup:

Firefly: Not that I care but where is your husband?

Mrs. Teasdale: (mournful) Why, he’s dead.

Firefly: I’ll bet he’s just using that as an excuse.

Mrs. Teasdale: (proudly) I was with him to the very end.

Firefly: Huh, no wonder he passed away.

Mrs. Teasdale: (dramatically) I held him in my arms and kissed him.

Firefly: Oh, I see. Then it was murder. Will you marry me? Did he leave you any money? Answer the second question first.

So, maybe there are some funny bits in there but I have never been a huge fan of the Marx Brothers and there was not much here to make me want to not forget the Marx Brothers. [Interesting double negative, eh?]

Cottage Reading 2015 Photo: S. Marshall

Cottage Reading 2015 Photo: S. Marshall

Perhaps, I am just not in the mood for slapstick comedy because as I write this, we are mourning the death of Sharon Pickle, a member of my Parkinson’s support group. She passed away suddenly from natural causes, shocking us all, because she was fanatical about looking after herself. She was a wonderful role model who has left us far too soon leaving a huge hole in many communities. Among other things, she was a yogi, a cook, a daycare activist, an outdoors adventurer and a person living with Parkinson’s. I am sure her husband and family are devastated.

It is at times like this when it is so very difficult to have a conversation about life and death that is free of caveats and assurances as to one’s own sanity. But that does not constitute sufficient reason to stay silent. In fact, I feel it would be dishonest if I did not write about death in a blog about living with Parkinson’s disease. I am certain that there are very few PwP who have not considered death in a slightly different light post-diagnosis than they did pre-diagnosis. Doctor assisted death/suicide is now part of our lexicon and when spoken aloud draws nods of affirmation from those in the know. At some point I will blog more specifically about this topic but today is not the day.

Death is creepy generally speaking and we come to it (or it comes to us) in various ways, usually unplanned and unexpected. The fact is that over 70 percent of the dopamine producing neurons in the area of my brain known as the substantia nigra had already died by the time I was diagnosed with Parkinson’s disease. The death of these cells happened quietly and without fanfare until my brain began to send mysterious and wrong signals to muscles, and muscles began to send wrong responses back to the brain. Whoa! What’s happening to me? I thought: I must be getting old as my gait slowed to the point where a lady in her 70s with a knee brace passed me on my daily walk; I couldn’t smell my favourite foods or detect when the gas burner on the stove was on but not lit [dangerous!]; I had incontinence and constipation issues; I started to shuffle, stumble and lurch when I walked; I felt kind of low more often; I had trouble with simple movements like rolling over in bed;  I developed weird muscle cramps where my toes want to curl up or down, or move independently of any conscious direction from my brain; and pain and peripheral neuropathy became, and remain, my constant companion. There are many other symptoms but the list is already too long and I am sure you get the idea. To be direct: loss of dopamine leads to muscle movement disorders with accompanying non-motor complications.

The fact is that cells in our body are dying all the time but they are replaced constantly for the most part. Not so in the substantia nigra. Death of dopamine producing neurons means we must ply the remaining cells with ever-greater amounts of the gold standard treatment, levodopa that is converted into dopamine in the brain. There are other treatments such as deep brain stimulation (DBS) in which electrodes inserted into the brain provide stimuli to block abnormal nerve signals which cause tremor and other Parkinson’s symptoms;  the use of “agonists” such as Azilect taken orally or Rotigotine delivered through a skin patch to bypass the blood brain barrier more effectively – both fool the brain into thinking it has more dopamine than it really has and mitigate fluctuations in wearing off; and a new delivery system called the duodopa pump where dopamine in the form of a gel is pumped directly into the duodenum minimizing “off” periods and dyskinesia. Others are in development.  Each of these treatments attempts to mitigate or minimize symptoms of Parkinson’s. None of the treatments are cures or can reverse the progressive degeneration of Parkinson’s. More on this sad fact later.

An important thing to remember is that “death,” is most often thought of, if not actually defined, in the negative i.e., as not life, and for the purposes of the general population, this absence of life is easy to detect mostly because the individual has been officially pronounced as dead by a medical practitioner who is trained to detect and measure signs of life. Mistakes in identifying death in animals are unusual but mistakes in declaring death for the plant kingdom are far more common than for humans. Conversely, we don’t tend to think of “life” as being “not death.” Life has its own positive signs aside from being not dead. I tend to think that life and death are not strictly polar opposites.

Of course this begs the question: if death is to exist, must it be defined in the positive, as something other than “not life?” And, if that is the case, does it reside in the same space life resided e.g., does death just replace life in the human body? Is death “evil?” And finally, is there a Soul? I want to know the answers to these questions but I don’t think that my life’s experiences have provided an adequate foundation to understand death. But, just as there are no two PwP who are identical in their manifestations of Parkinson’s, there are no two individuals who have identical experiences with death. Death is a very broad concept and can range from death of brain cells as in Parkinson’s to the death of pets and plants to the death of friends and loved ones – all multiplied by some factor that captures the combinations and permutations of all living interactions? Crazy? Maybe, but let me explain what probably lights up in a scan of my brain when I think about death.

Do young boys know about death, dying and such things?

As a boy playing in and around the small prairie village of Altamont, Manitoba, I was no stranger to suffering, dying and death. Many a spider lost one or more legs to the merciless and senseless torture of small hands, before being put to death (mercifully?) by a well-placed brick, a solid stomp from a worn no name brand running shoe (black canvas uppers, white rubber soles – no Air Jordans, Nike, Reebok, or New Balance,) or the intense insect frying heat generated by a magnifying glass made of a broken shard from the bottom of an old Coke bottle. Rodents – mostly mice or gophers – were dispatched with somewhat more difficulty in traps designed to maim at the very least and optimally to kill. Delivering the final blow to a gopher might involve such skill and technical expertise as dropping a stone on its head such that one or both of its eyes bugged out of the sockets. Images like this stay with one for a lifetime.

Oh man, am I ever digging myself in deep here! Now I am placing myself in with a class of merciless killers – boys, but killers nonetheless. Whatever happened to those words we so joyfully sang in Sunday school?

All things bright and beautiful,

All creatures’ great and small.

All things wise and wonderful,

The Lord God made them all.

All Things Bright and Beautiful, 1884 lyrics by Cecil Frances Alexander

And what is a small boy to do when he follows the direction of a respected adult elder to perform a mercy killing of a deformed newborn in the litter of a captive pet animal where that newborn was unlikely to survive; that it would not be able to fend for itself to live, or defend itself from predators to avoid death; that it would likely face bullying and harassment, maybe even resulting in death from its own litter mates or a parent? At least that is what we are told.

Experience with death and dying is an intensely private and personal matter of great complexity. Unpacking it is akin to unraveling a very bad snarl in a fishing line caused by a careless cast of the lure without placing the soft but controlling pressure of the thumb on the reel to keep the line from forming a chaotic mess of nylon as it issued forth. Freeing the gnarl might take a seeming eternity and might not be possible without the aid of a trusty jackknife to cut and discard the offending section and then reattach the remainder of the line to the leader, solving the immediate problem but shortening the line by some immeasurable length. The ease with which the knot could be cast aside and the speed at which the task at hand (fishing) could be resumed was so tempting that the remedy requiring patience was seldom followed, especially by young boys.

So, life and death for young boys was often gnarly, knotted and tangled in a mess of confusing hormones and societal expectations. With little or no concern for consequences, we careened carelessly through nature, wreaking havoc on sub-species. It seemed intuitive that the tangle we created could always be excised and set adrift to float outside our orbit, but doing so also limited our ability to deal with each successive instance.

We most often associate death with the elderly dying. As such, it is something sad, maybe tragic, but part of the natural life cycle. It is when it is unexpected or is encompassed in a disguised form that death frightens us. And we learn to be frightened very early in life – it is germane to our survival. But what frightened me most as a child was that dead was dead. We would be no more. I couldn’t have cared less about a possible afterlife in Hell with the Devil or an afterlife of bliss in Heaven. Maybe my Sunday School and religious upbringing failed me, or I failed it more likely, but what I feared was deadness. Truth be told, as children we didn’t know what it would be like to be dead, and we don’t know that now. What we did know was that we didn’t want to be dead, nor do I now.

Am I making any headway in understanding anything here? Read on if you are inclined to wander through the foggy reaches of my past and the pockmarked surfaces of my memory banks, and find out.

The Old Fisherman

The first time I ever saw a dead human body was at the funeral of Mr. Chas. (Charlie) Simpson. To me he was an old man (in his seventies), a retired farmer who lived with his wife, Edna (fondly known as “Simmie” to all the neighbourhood children,) across the back lane and at the end of the block. He was a kindly gentleman and he was my fishing buddy in a kind of Jake and the Kid sort of way when I was a lad of seven or eight. On many weekend mornings in the Spring (fishing was always better in the Spring before the waters of the Pembina River turned murky, dark and dank in the summer heat and the Jackfish – Northern Pike to the pretentious – turned sluggish and lurked listlessly in a few of the deeper recesses of the river, their flesh soft and unappetizing,) I would rise at dawn to make my way across the lane, lunch bucket filled with peanut butter and banana sandwiches, with my dad’s tackle box and my very own rod and reel at the ready to catch “our limit.” We never ever did catch our limit (8) but there were several occasions when I out fished the old fisherman and returned home proudly to display the catch to my mother. Mother was always suitably effusive in her praise but I knew that secretly she hoped I would be shut out so that she would not have to see the fish, much less filet them. As it turned out, my father always filleted any fish I caught until I was old enough, and skilled enough, to handle the sharp filet knife. The photo below shows me with my first big fish caught off the bridge on Hwy 34 south of the “Four Corners” near Swan Lake.  Ever since this time, I am amused by how many people fish from bridges that have signs that say “Do Not Fish From Bridge.” Even my father, ever mindful of the law, ignored the sign because if the best place to fish is off the bridge then you should fish off the bridge!

First Big Fish Photo: R.B. (Bert) Marshall circa 1957

First Big Fish Photo: R.B. (Bert) Marshall circa 1957

As I said, Charlie Simpson’s  body was the first dead human body I ever saw. I was about nine or ten years old when my father told me that Charlie had died or “passed away,” as is the common euphemism for this event. I don’t remember exactly how it transpired but I recall going to the United Church on the day of Charlie’s funeral with my friend Wayne and slipping quietly into the back pew just before the service began. I believe I was there with my father’s permission if not my mother’s. She seemed a bit more concerned about the effect my attendance might have on me. At any rate, Wayne and I strained our necks to peer through the many mourners who crowded the small church, to glimpse the body of my fishing buddy. It was open casket. No one had warned me about this part of the service. I could just barely see the tip of Charlie’s nose that, from the perspective of a small boy, I had always thought to be uncommonly large. And I could sort of make out his fleshy lips – lips I most often saw caressing his pipe, carefully filled and tamped by tobacco stained fingers, lit with a wooden Eddy match sparked to life under his thumbnail, and capped with an old aluminum lid from a pepper shaker. I witnessed this lighting up ceremony hundreds of times.

However, I had never been witness to funereal rituals. My friend and I did not know what do as the service drew to an end. Without a word between us, in one spontaneous movement we decided to make a run for it out the entrance door. But some kindly and well meaning pallbearer (a farmer no doubt) cut us off in the aisle as he would a pair of skittish calves, arms extended out and down from his sides, hat in one hand, shooing us up the aisle toward Charlie, pasty as he was, in the open casket. One secret of herding cattle you need to know is that they head for daylight, and the only daylight to be seen was past the casket and to the right where a side door left the church. We galloped across in front of Charlie’s casket as fast as our hooves could carry us to the safety of the outdoors, but not before I stole one last, fast look at the fisherman. I saw him, or at least I saw his likeness, his visage … but I knew he wasn’t there. His Spirit, his Soul, his Being, his Life Force, whatever you want to call it, had departed the day he rose from the supper meal he shared with “Simmie”, went to relax on his sofa and passed away peacefully, leaving me only with memories of pleasant times on the river bank, the strike of a fish on a well-cast lure, and the dipping of the bobbin as a fish nibbled the bait. These experiences and occasional contextual remembrances were triggered mostly by the unlikely combination of peanut butter and banana sandwiches eaten with fishy fingers adorned with shiny fish scales.

The Hitchhiker

Fast-forward a few years to a time when I was hitchhiking from Winnipeg to Altamont. [Note: I do not condone hitchhiking now but that is what we did in those days.] In any case, one sunny morning, I was thumbing on Highway 3 just south of Carman, Manitoba, near the cemetery where my maternal grandparents now rest. A hearse from Doyle’s Funeral Chapel was approaching and I thought, what the heck, I will just leave my thumb out. The black Cadillac limousine passed without any indication that it might stop and I turned to trudge on my way. But after a devilishly longish moment, it slowed, coasted without braking to a halt on the gravel shoulder of the highway, and waited patiently for me to catch up.

I opened the front passenger door to speak to the driver dressed in his black formal funeral attire with white shirt and black tie. He let me know that he never stops for hitchhikers but he is making an exception just this one time. I was not sure whether to be encouraged by this declaration as I was at that point reconsidering this unexpected invitation for a ride in a hearse.

He asked me where I was going. I said “Altamont,” and he said, “Well son, this is your lucky day. That’s where I am heading.” It seemed like a good fit so I jumped into the front passenger seat. We exchanged a few pleasantries and I looked a little nervously over my left shoulder and asked if there was anyone riding with us in the back. He replied somewhat mischievously, “Would it make any difference if there was?” Never one to miss an opportunity to be a smart ass, I quipped, “Well, it seems I am riding in the front seat, so it doesn’t much matter to me then, does it?” At that point the driver knew he had me hook, line and sinker to use a well-worn fishing cliché and like any good fisherman, he proceeded to set the hook firmly. “Yes, there is someone riding along with us today” and he let several miles of road pass in silence. As we made the turn onto Highway 23 at Jordan, I couldn’t stand it any longer and I quietly inquired, “so who is in the back?”

“Mrs. Simpson,” he replied. Now, let it be known that Mrs. Simpson was her own person and has her own legacy in our village. My sisters knew her as “Simmie,” the neighbourhood babysitter, surrogate grandmother, baker of delicious cookies and other good things, and I knew her as the wife and then widow of my aforementioned fishing buddy, Charlie.

I sat in silence, slowly contemplating the magnitude of what was occurring. On her last ride, Simmie seemingly had just compelled the driver of this hearse, on official business with corpse in the casket, to ignore company policy and offer a seat to an unidentified, bearded and shaggy haired hitchhiker in the hearse transporting her remains to their shared village where a funeral service would be performed before her final Peace. I maybe should have felt privileged and honoured that “Simmie” was charitable enough to assist me in this small way on my travels, but, at the time, it was mostly a little creepy, and as young men often do, I later made light of the situation publicly rather than fess up to my ignorance on matters relating to life and death – or maybe more appropriately to matters relating to the Soul.

We were now past the small village of Rosebank and coming up upon the cemetery just east of Miami, Manitoba where the remains of my paternal grandparents lay in rest. There is a stone in that plot with my name on it – to commemorate the life of my uncle, my namesake, who was killed in World War II at Ortona, Italy where his life is also commemorated. I have to admit that even to this day it is a little unnerving to see a grave marker with your name on it, especially with such a close connection.

My name sliding under the earth into the grave Photo: R. Marshall 2015

That’s my name sliding into the grave   Photo: R. Marshall 2015

The driver again broke the silence by asking, “Did you know Mrs. Simpson well? As I said, I have never before stopped for anyone when I was carrying the dearly departed.”

I had no immediate answer. I was floating in a reverie created by the smooth ride of the Cadillac and my thoughts of an uncle I would never know – an uncle whose memory and death never failed to bring tears to my father’s eyes.

After another fairly long silence we were passing the corner to Deerwood near where Charlie and Simmie farmed for many years and (would you believe it?) actually rented the farm of my great grandfather Henry Moorhouse from 1928-1932. I summoned the wherewithal to break the reverie of the sumptuous ride to venture, “Yes, I knew her quite well as she lived across the back lane from us when I was a young lad.”

The last few miles flew by and we turned down the road east of Altamont taking us close to the peaceful cemetery where the ashes of my own parents now rest, before turning west to stop in front of the United Church. Just as I looked over to thank our driver (Simmie’s and mine) for the lift, he nodded, smiled and remarked wryly, “I wager that Mrs. Simpson was keeping an eye out for you.”   To this day, I am not sure whether the driver knew that her husband Charlie had one glass eye  – so they probably both had an eye out for me.

[OK, at this point I give you permission to groan at my most inept, and inappropriate, attempt to incorporate humour as a literary device to bring this anecdote to a conclusion … but it is not quite closed.]

I never saw the funeral driver again as pallbearers and friends of the Simpson family met the hearse at the church and I was distracted by those looking askance at me as I exited from the Cadillac’s passenger door and beat a hasty retreat along Main Street, disappearing into the Post Office building owned by my father. I don’t recall the conversation with my dad about this strange occurrence but I do know that I never went to the funeral service for Simmie even though it was happening at that very moment just a few short steps to the west. It was not out of disrespect that I did not attend, but I already had my moment with Simmie even though I was pretty certain she wasn’t in that shell of a body anyway. It was vacant. She had departed. But I did feel that her Soul was somewhere. But where was that?

Yeah, I know this sounds really hokey, but hokey or not, Mr. and Mrs. Chas. Simpson are playing a central role in my attempt to understand the ‘dead is dead’ philosophy of death. At the moment they are not supporting it.

Where is that Bert Guy Anyway?

I witnessed my own father’s death, his very last breath if that is how we measure end of life. My sister Colleen, my mother and I sat with dad at his hospital bed in Humboldt, Saskatchewan, as his breathing grew more and more shallow. My sister reports that earlier that day a little (and I mean “little” literally) nun appeared as if out of nowhere and sat with dad, rosary in her hands, softly singing, praying. It was calming and peaceful. Almost as quickly as she appeared the little nun disappeared and dad’s breathing continued on its soft downward spiral of shallowness. My sister, a former nurse, remarked that it would not be long. Hospital staff respected our privacy and my mother took one last opportunity to run her hands lovingly over the entirety of my father’s face, cheeks sunken but whiskered, and kissed his non-responsive lips as she whispered that she would next see him with her parents, Bill and Minnie, and her brother Jim (oh, how my mother longed to see her brother in an afterlife.) My parents had not shown a great deal of open, public affection for each other in their lifetimes, and I felt a bit like a voyeur as I witnessed this one last moment of intimacy, a moment that touched me greatly.

With my sister and mother on the left hand side of the bed and me at the foot, my father continued his slow demise until finally his mouth opened and with one last great final gulp of air, his breathing stopped. We spent a brief moment in silence before my sister took my mother to a grieving lounge close by. I stayed behind for a moment, and turned to say what I hoped would be some last, meaningful and profound words to my father. The few words I managed to utter disappeared, incomplete and without meaning, as if into a void, as I realized that I was alone in that hospital room, very alone, spookily alone, alone alone. He was gone. An empty vessel lay where his living body had been. Passed away. Passed on. Crossed over. Died. Dead. Departed. Popped off. Six feet under. Bought the farm. Checked out. Carried out feet first. Carried out in a pine box. Finito. Croaked. Pushing up daisies. Bit the dust. Kicked the bucket. No longer with us. Out of his misery. In a better place. A goner. Toes up. Tits up. Gone to his just reward. Gone to heaven. Deader than a door nail. Met his maker. Joined the heavenly choir. Shuffled off this mortal coil. And the list goes on. Death expressed through euphemism most certainly seems final. Perhaps, ‘dead is dead’ after all?

Years later I made some comment about my father, Bert, to my mother who was by then in the early stages of dementia, and she replied, “Where is that Bert guy anyway? I haven’t seen him around for awhile.” I knew exactly what she meant.

Trying to Google that 'Bert guy' on ipad. Photo: A. Marshall

Trying to Google that ‘Bert guy’ on ipad. Photo: A. Marshall

The Sentencing

In my early 20s I was living in a student’s Cooperative in a building called The Madison at 210 Evanson St. in Winnipeg. I shared a room with my friend R.W. in what was the old nurses’ residence of the Grace Hospital. Technically, you were supposed to be a student to be entitled to a room and meals – breakfast (make your own), bag lunch (pack your own), and a dinner/supper meal, usually hot and prepared by a cook. Food supplies were provided and left in the basement kitchen area for consumption in the adjoining dining hall. The cooperative was managed and operated by a collective, the structure of which I was not terribly interested in at the time and am only mildly interested in today. The occupancy rate was typically less than one hundred percent so accommodation was usually available to non-students.

The whole political and social environment was … well … quirky to say the least. A mixture of students with left leaning values; students who were still searching for any kind of values and changed them every hour, day or week; students who were students and wanted to be left alone; non-students both employed and unemployed with a similar wide range of values and political orientations; and draft dodgers escaping the reach of Uncle Sam’s army and bringing with them a strange ideological mix of pacifism, democracy, individualism and hippy peace loving into the collective environment of the cooperative.

Meetings of the membership, board and residents were eye openers for me – a young rube from the country. I had never witnessed such process and antics in my life to that point. However, regrettably I have since then, many times! The politics of cooperatives is not always compatible with Marxism, Marxist – Leninism, communism, socialism, social democracy, anarchism or humanitarianism to name but a few political and ideological factions. One thing was clear though: a major point of contention was the ongoing battle to keep the kitchen clean with dishes washed after meals. A weekly rota was posted delineating which floors had responsibilities for each day. The rota was regularly ignored and duties performed haphazardly, if at all. The kitchen area was often filthy but fell just short of rotten food and cockroaches thanks to the diligence of some residents who covered up for laggards by doing the work themselves. It was a classic individual solution to a collective problem, saving the collective from itself.

Let’s be clear here though. I am not saying cooperatives or collectives cannot work. I believe they do but it is not my intent here to convince you of their many merits. What I am saying though is that diversity of political values and lack of commitment to a common vision of a collective social order, coupled with questionable cleanliness habits of youth and others who never matured, spells trouble.

The resulting fireworks at residents’ meetings featured politics as a smokescreen behind which to hide deficiencies and inefficiencies. It was worthy of charging admission. What would start out as an argument about who was supposed to clean up the kitchen and dining area after breakfast often ended up as an argument about who was the most progressive politically. Many a discussion was shut down by such scintillating and scathing commentary as: “I was a socialist before your asshole was the size of a shirt button…. You asshole!” – playing the age/experience card if not the “big assholes are always better than small assholes” card.

Permit me an aside here: Don’t you think that digression is both my best and worst trait? I apologize but the segue into death in the cooperative is not easy as no death actually occurred within the Cooperative at the time that I lived there. However, astute readers will know that The Madison fell on harder times approximately 40 years later in 2007 when police shot and killed a resident who had fatally stabbed another resident and in 2008 a methamphetamine lab was discovered in one of the suites in the building. By that time it seems that a not-for-profit corporation providing low-cost room and board to seniors and people with mental and physical disabilities was running the complex. It had clearly fallen far from the more principled intentions of the Student’s Cooperative.

In my day, the most serious infraction at The Madison was that eggs and pancakes were left to adhere like glue to the frying pans and pots in the kitchen. Hardly enough aggravation to warrant a death sentence. Nevertheless, it was a death sentence indeed that provided the real connection to death – one that has never left me. Let me explain.

R.W. and I developed a routine during times when we were other than gainfully employed. My political, sociological and philosophical education was greatly enhanced during these times and I learned to deliver acerbic, barbed retorts in hot, beery debates in a variety of settings, legitimate and otherwise. Being a little short of cash we scouted out several breweries that provided one or two free beers to patrons who attended their “hospitality” lounges. Labatts, Molson, Carling, O’Keefe, and Pelessier were the major breweries vying for market share at the time. Readers will recognize that much rationalization in the corporate beer sector has taken place since then, and today craft breweries, non-existent in those days except as illegal private home made brew, have created their own market niche. Just a fraction of a percentage point difference in market share translated into $ millions then, just as it does today, and breweries tangled head to head for precious brand loyalty. Corporate representatives descended into many local “beer parlours” buying rounds for the house on crowded, but not too crowded, Saturday afternoons. The representatives were really only supposed to buy one or two rounds but occasionally they became embedded in the clientele along with a local or NHL old-timer hockey hero. In those cases beer flowed freely and frequently and patrons in that particular hotel, or at particular tables in that particular hotel, felt that they had hit the mother lode. Hospitality lounges at the site of the brewery were one of the other marketing ploys. The rooms were open to those who were taking tours of the brewery, businessmen (and they were all men) who had contracts with the brewery, long time employees and retirees who met to have a few draught and shoot the shit with their buddies, and to those of us in the general public who happened to uncover this little secret – a couple of free beers if you played your cards right.

But R.W. and I were never motivated solely by the promise of free beer. No, we were much more civic minded. We would head down to City Hall to catch magistrate’s court at 10:00 a.m. with it’s plethora of parking tickets, moving traffic violations, small claims, offences against property and persons, lawsuits of various types, and liquor and drugs offences. We became friendly with bailiffs so that we would know which magistrates were most likely to hear the most interesting cases, and which magistrate’s docket was not to be missed that morning. Justices Ian Dubienski, Isaac Rice, and Harold Gyles were all on the bench and each had his own way of dealing with not only the alleged offenders but also the lawyers who appeared in their courtrooms. For those who dared to represent themselves without benefit of legal counsel the first lesson usually was that Magistrates were to be addressed as “Your Worship” and not “Your Honour.” Remember this was long before the days when television discovered (some would say created) the attraction of watching reality court shows such as The People’s Court with Judge Joseph Wapner or Judge Judy with Judy Sheindlin. In the Winnipeg courtroom, live and in colour, Judges Dubienski, Gyles and Rice were our judicial role models and they never failed to provide added value to our education.

So it was that I was introduced to the protocols, traditions, and sometimes but not often, the niceties of criminal court, without being charged myself, appearing before the Magistrate in clothes stinking of booze and puke from the previous night. I had the privilege of observing class, race and gender at work in the courtroom pretty much as a ‘fly on the wall’ rather than an active participant, which I am ashamed to admit I could very well have been on many occasions. If I may be permitted a short (and probably bad) allegory to explain, sometimes the difference between being a ‘fly’ and being a ‘cockroach’ is infinitesimally small and separated only by good fortune rather than genetics or good bloodlines. I often reflect upon those courtroom dynamics as I try to understand how institutional and societal inequalities and discrimination are solidified and perpetuated, or sometimes overturned or nudged on a new course. The seemingly ad hoc, informal and somewhat voyeuristic approach R. W. and I took to entertainment shaped and heightened my awareness of social, political and economic relationships in a way that no amount of ‘book – learning’ could ever have done.

But back to free beer – look, while free beer may not have been the prime motivation for our self-directed program of education, it did play a close secondary role – and I recall that the Carling’s Brewery hospitality lounge was often open by 11:30 a.m. and was located at Redwood and Main not far from the City Courts building.  If magistrate’s court did not quench our thirst in our quest to understand the nexus of social, economic and political affairs, we hightailed it to Carling’s to plan the afternoon itinerary over a cold draught. We discussed various legal matters from the morning and reviewed any intelligence we had on the afternoon cases at the Court of Queen’s Bench on Broadway Avenue starting at 1:30 p.m. The Court of Queen’s Bench adjudicates the most serious of criminal and civil cases along with family court matters. Needless to say we weren’t ever permitted to observe family court matters and I don’t recall us ever wanting to witness those proceedings. We did however want to observe murder trials and other crimes of fraud or high finance and we scrutinized newspapers and court listings in the Law Courts building to finalize our plan.

If there was nothing of interest at Court of Queen’s Bench we knew there were hot political issues that would make Question Period at the Legislature, virtually across the street from Court of Queen’s Bench on Broadway a more exciting option at 2:00 p.m. In that case we were more likely to seek sustenance at the Labatt’s Brewery right across from the Legislature at Osborne and Broadway.  The newly elected Ed Schreyer New Democratic Party government guaranteed lively questions from the opposition to this first social democratic government in Manitoba. We followed provincial politics very closely, studying the machinations of the media and the parties alike. R.W. was ravenous in his desire to study and understand provincial politics. His working class and union background was the perfect breeding ground for political action and analysis. His influence on me in these matters was considerable and I respect and value his views and analysis to this day.

And the socio-political terrain of the time was rich (some would say rife) with politicking, maneuverings, and dissension. The NDP won a victory that was not well accepted by many Manitobans and the divide in the population seemed to run approximately on a diagonal line from the southeast corner of the province through the City of Winnipeg to the northwest corner with everything north of this line voting NDP and everything south voting Conservative or Liberal. But there was no unanimity within the NDP either. Some supporters felt the party was too conservative under Schreyer and that the working class agenda for change had been abandoned. I suppose this group felt their skepticism was warranted when Schreyer accepted to be Canada’s Governor General in 1978 upon the recommendation of then Prime Minister Pierre Elliot Trudeau. The Winnipeg-based socialist magazine Canadian Dimension published a cartoon that had Schreyer saying, “The working class can kiss my ass; I’ve got the Governor General’s job at last.” He later became Canadian High Commissioner to Australia before finishing his rather strange career with an electoral loss for the NDP in the 2006 federal election.

On the other side of the political spectrum within the NDP, Mel Watkins, James Laxer and Robert Laxer led the radical Waffle faction formed in 1969. The only member of this faction to actually hold a seat in the legislature, Cy Gonick, was a strong vocal supporter inside and outside of the Legislature. The normal flow of NDP policy conventions was disrupted as the Waffle caucused, effectively in some cases and not so effectively in others, to have policies calling for an independent socialist Canada adopted. I witnessed this as a delegate of the Fort Rouge NDP to the Convention in 1970 or thereabouts but I was too naïve (still the country bumpkin) to know what was afoot and what was at stake. However, I still recall with awe the moment federal NDP Leader Tommy Douglas entered the ballroom of the Fort Garry Hotel to address delegates. It was electric, and his speech was delivered extemporaneously with such passion that I could not understand how most of the electorate could not understand.

A few short years later, labour leaders led the charge to disband the Waffle and it ceased to exist in any meaningful way beyond 1974. I raise these matters not to argue or analyze either the contributions or the negative impacts of such a nationalist movement with the NDP but to point out that it was a turbulent time within the politics of the left in Manitoba. It gave R.W. and me much to digest, talk about and argue over. I have recently reconnected with R.W. after many years and I suspect we will pick up some of this discussion once again. In retrospect, it is no wonder that we sought out entertainment and enhanced our education in the gallery of the Manitoba legislature watching a political movement seeking its path in unchartered waters. [I will return to other personal stories about my ‘small p’ political life in a future post.]

I guess I had better get back to The Madison and why it has such a prominent place in both my recollection of events involving death and in my attempt to understand what happens to a person’s Soul when one dies.

Consider this: On June 26, 1970 (my 21st birthday coincidentally) a police officer, Detective Ron Houston, was killed near the Stradbrook Hotel in Winnipeg. It was a hotel I frequented often with my friends, as the aforementioned Students’ Cooperative in The Madison was not far away at 210 Evanson St. A certain Thomas (Tom) Shand was also a resident of The Madison and after several days as a fugitive Shand was arrested for the alleged stabbing and murder of Det. Ron Houston. [It was later revealed that a scuffle ensued in the initial attempt to apprehend Shand and Det. Houston’s revolver came free and was used by Shand to fire a shot at Det. Houston. It is not clear that the shot actually hit Det. Houston and the likely cause of death was the stab wounds from the knife that Shand carried to slit screens during his night time forays through residential neighbourhoods.] In the days immediately prior to his arrest, Shand sought refuge with friends who did not live at The Madison and after consultation with a lawyer he was convinced to turn himself in to the RCMP to avoid immediate, rough, retaliatory justice at the hands of the City of Winnipeg Police.

So Tom Shand was known to us – slightly – but known nonetheless, and of course, as soon as the news of his arrest broke, the hallways of The Madison were buzzing with chatter about who knew what? What had happened? And how close were you to Tom Shand? Social and gossip credibility value increased exponentially with frequency and intensity of contact with the alleged killer. One young woman took the prize, as she had been on a date with Shand a short time earlier. To paraphrase her when she learned the news, “Holy fuck, he was in my room!” How close they really were was never fully revealed and it matters not. What does matter is that these events lead to one specific moment in time that is indelibly etched upon my mind.

The death of Det. Houston, tragic though that was, is not the death that is germane to this story. Tom Shand, it was alleged, was skulking that night between two apartment buildings when he was approached by Det. Houston investigating a peeping Tom (yes, no kidding) who was also a rapist. Shand, in his defence, claimed that he had been involved in a poker game that had ended badly and he thought Det, Houston was one of the other players out to rob him of his poker winnings. Interestingly, many of the residents at the Cooperative were more disturbed by the fact that Shand was accused of being a peeping Tom and rapist than with the possibility that he killed a police officer.

The wheels of justice turned quite quickly after Shand’s arrest on June 29, 1970. He was committed to trial with the case to be heard October 5 -15, 1970, Court of Queen’s Bench, Justice John M. Hunt presiding. R.W. and I made a conscious decision to be in the spectator seats for as many trial dates as we could and we exercised much discipline to be there on time. Once or twice we did make eye contact with Shand and occasionally with other acquaintances in the courtroom. I don’t recall any conversation or discussion with any of those individuals.   Shand was found guilty and remanded for sentencing on October 10, 1970. Of course we decided we had to be in attendance at the sentencing.

I anticipated that sentencing would be routine and that I would not feel much of anything when it was completed. Boy, was I wrong! I don’t recall most of the preamble or reading of the charge but the words enunciated so clearly by Justice Hunt echo in my mind to this day. “Thomas Shand, you shall be taken from hence to the place from whence you came, and from thence to a place of execution, where you shall be hanged by the neck until you be dead. May God have mercy upon your Soul.” Concise, simple, clear direction that would end a man’s life. I had now witnessed first-hand the threat of death by the state as retribution for the killing of a police officer, a crime which carried the mandatory death sentence.

In finding Shand guilty the jury did not make any recommendation as to clemency and his initial date of execution was set for June 10, 1971, not quite a year from the day he murdered Det. Houston. Predictably, Shand appealed to the Supreme Court putting the execution momentarily on hold. The Supreme Court dismissed the appeal on November 30, 1971 and the execution date was rescheduled a second time to March 8, 1972. But Thomas Shand was not hanged as his neck was snatched out of the noose on February 24, 1972 by Order in Council of the government of Pierre Elliot Trudeau commuting his sentence to life imprisonment. Those who favour capital punishment will say that the wheels of justice stopped turning that day. I do not share that view nor do most Canadians. No hanging has occurred in Canada since December 11,1962 when Arthur Lucas and Ronald Turpin were hanged together at the Don Jail in Toronto. The debate on capital punishment in Canada today is not one that simmers or rages. It merely exists quietly without force or fury.

For his part, Thomas Shand served the mandatory part of his life sentence, was released from prison, and ended his life by hanging himself on November 7, 1985.

For my part, Shand’s sentencing in the hushed Winnipeg courtroom is seared forever in my audio memory as evidence of our capacity to execute (pardon the use of both ‘execute’ and ‘pardon’ in this sentence) unspeakable acts upon our peers. Not so far away from the actions I knew so intimately as a young boy. But no amount of childhood playing at cops and robbers, or desensitization to death by killing bugs or rodents, or watching farm animals being sent to the slaughter, or studying military battles and mourning war dead, prepared me for that moment when a man was sentenced to die, deliberately, purposefully, legally, by the very hand of another human. The sheer enormity of this decision, this threat, this action, overwhelmed me. I was neither friend nor family of Tom Shand. I barely knew him. But in that moment of sentencing both Shand and the State reeked equally of barbarism, and it startled me.

The rational part of my brain wants to reason that Shand had a Soul that was integral to his being until he committed suicide. Thereafter his material body existed only as momentary testimony to the fact that it had one day been inhabited by a Soul. But … there are always more questions than answers. Hadn’t Tom Shand’s Soul had been given an eviction notice when he was sentenced to hang? Or perhaps, arguably, such notice is illegitimate in that it was delivered by a Soulless state? If Tom Shand’s Soul persisted past the time of his death by suicide, where did it go? To rehabilitation perhaps?

Whew!  I think it is time to change gears and move on to something else – like – what – more murder?

Murder in the Garden

Death and gardens go hand in glove. Flowers adorn graves. Wreaths are laid against memorials and monuments. Masses of slimy annuals are cruel evidence of an untimely frost. Faces of daisies shine brilliantly until they beg to be deadheaded by the gardener. Early birds catch worms; insects provide fodder for chickadees, robins, nuthatches, woodpeckers, purple martins, and many other birds; and mice and voles are favourite meals for owls, hawks and falcons. In colder climates, tropical bougainvillea and mandevilla are sacrificed as annuals to provide showy colour until the very last second of good weather when they succumb to Jack Frost’s killer bite. Some gardeners go to great extremes to protect tender species of roses and fruit trees by laying them down and burying them under the earth, covered with straw, cheating Mother Nature by intervening in her genetic predetermination that they should die in a zone 3 climate. Plants die providing compost turned into rich humus and bountiful growth in subsequent years. If it is safe to do so, we are encouraged to leave dead trees standing (called a snag) as hosts for insects and dining rooms for woodpeckers. I haven’t counted but I am sure there are thousands of different ways to itemize and examine death in the garden. This does not particularly bother us and we let such events pass with little if any thought, never mind consternation.

Mandevilla in early October Photo: S.Marshall 2015

Mandevilla in early October Photo: S.Marshall 2015

Mandevilla sacrifice early October 2015 Photo: S.Marshall

Mandevilla sacrifice late October 2015    Photo: S.Marshall

I am now confessing that I, along with an unnamed accomplice, conspired to commit murder in the garden. It happened many years ago when our children were much younger and consequently much more impressionable than they are now. I worry about the effect that my actions have had upon them. You see, I was eating a grapefruit one day when I noticed the pip had a small greenish yellow growth emanating from it. I reflected upon my very first school scientific experiment conducted in Miss Mary Armitage’s Grade One class. [Yes, it was Miss and not Ms. in those days and there was no kindergarten – junior, senior or otherwise. I know, I have been greatly disadvantaged as a result.] The experiment was to have a bean germinate by placing it in a jar with a damp tissue. It matters not whether the jar is in light or dark. After a few days, white roots begin to emanate from the bean and a small green leaf emerges from the opposite side. Germination is complete and all we need to do is plant the geminated seed in soil and tend as normal. Since the first steps had already been completed I just shoved the grapefruit seed into some soil in a very small pot and placed it in the kitchen window, watering it occasionally. It grew a few inches that summer, lay dormant for the winter months and continued its upward growth trajectory the following spring.

The tiny grapefruit tree enjoyed the next few years, repeating a cycle of joyful basking in the sun accompanied by new growth and vigour in the summer and a period of virtual dormancy in temperatures not far above freezing causing some of its leaves look slightly sickly.   I hasten to point out that we did not coddle the grapefruit. It mustered and stored enough strength in the summer to see it through the long Ottawa winters.

I am not certain as to how any years passed but the grapefruit continued to grow vigorously. It spent the warm weather summers out on our patio enjoying the natural rainwater in its roots and the wind blowing through its leaves. It forced us to free its root bound mass from its too small pot several times, transplanting it each time to a new pot larger than the last. The tree outgrew its spot in the bow window in the kitchen, graduating to a spot on a side table in the family room, before landing in on the floor of our family room next to my favourite easy chair. Each summer we wrestled the taller and leafier tree in a larger and heavier pot through a patio door that had suddenly become too small.

The grapefruit of course never flowered or bore fruit. We made no effort to see if it could, leaving it to its own devices. Nevertheless, there was one occasion when it appeared that it had fruit. I love kumquats and was relaxing in my easy chair enjoying each explosion of orangey tartness as I popped the expensive little fruits into my mouth. I thought it might be fun to stick a few kumquats on the spikes of the grapefruit tree. Yes, they have quite long almost lethal spikes that attacked me on more than one occasion as we ferried the tree to patio and back each year. The kumquats looked as if they belonged. I waited and it wasn’t long before a couple of children took the bait and excitedly announced that the grapefruit tree had baby grapefruit! Of course, it also wasn’t long before they reasoned, smart children as they are, that this was a small joke initiated by their father. They are smart children because they learned very early in life to question everything I said or did. They learned that I was not above stretching the truth or testing their credibility. True or not, I believe it is necessary in life to develop a critical point of view. Never accept anything at face value. It may not be what it seems. The little kumquat/grapefruit joke was one of those occasions. Some children still remember it, somewhat begrudgingly if not fondly.

One spring it became clear that the grapefruit tree had a strong desire to reach its genetically pre-determined height of 40 feet or more. It strained to push its way through the 10-foot ceilings of our family room. Its failure to push a hole in the ceiling resulted in the upper most branches bending back in an attempt to grow with its head upside down. Something had to be done. Cutting a hole in the ceiling was not an option. It was then that my accomplice (still unnamed) and I conspired to murder the grapefruit tree.

After the last chance of frost that spring we moved the grapefruit outside but instead of leaving it on the patio to sunbath, we freed its roots from the still too small pot and placed it in a hole dug situated specifically to ensure maximum sunlight.   To say the grapefruit flourished would be an understatement. It was now free to send its branches upwards and outwards as far as it could reach. It was now free to send its roots downwards and outwards as far as they could reach. Freedom is such a …well … freeing feeling. The grapefruit’s leaves were a healthy green not seen before and the branches seemed to wave a heartfelt thank you in the breezes. It was a glorious summer for grapefruit but we knew it would end, and it would not end well.

The grapefruit never really knew what hit it. Murder is often that way – sudden, unsuspected, brutal, and heartless. I watched from the kitchen window as the first hard frost sent the tree into shock. As the days passed, it grew colder and snow drifted through grapefruit’s canopy, its leaves stubbornly refusing to fall. Grapefruit trees are not genetically wired to survive our freezing, bitterly cold climate. I am not sure of the exact time of death for grapefruit but I suspect it was relatively sudden. While I do relish the fact that we were able to give grapefruit one last blast that summer, I feel a distinct sadness that it had to end the way it did – by premeditated cold-sapped murder in the garden by the gardener and his accomplice using the winter’s cold. I wonder if murder is always accompanied by remorse?

There is often one last blast of beauty before winter arrives Photo: S. Marshall

There is always one last blast of beauty before winter arrives Photo: S. Marshall

Is the Death of Parkinson’s too much to ask?

Parkies are fond of saying, “You don’t die from Parkinson’s but you will die with Parkinson’s.” I am not sure of the origin of this slogan, but It was always one with which I could identify as it helps me understand why Parkinson’s is so insidious. Others such as Kirk Gibson, former major league baseball hero and relatively recently diagnosed PwP, state “It’s (Parkinson’s) not a death sentence. It doesn’t have to be a death sentence. So you start looking at a course of action, and you have to implement it.” Interesting quote from Kirk. The first sentence says that it is not a death sentence. That seems rather definitive, doesn’t it? But then he immediately qualifies it by saying that it doesn’t have to be a death sentence. So it might be a death sentence some of the time but not every time? This may be confusing, or I may be confused, but when you think about Parkinson’s, it is consistent with its insidiousness. It is a long term, chronic (persistent) disease that gets progressively worse. You ought to die from its many symptoms and the increasing severity of those symptoms, but you don’t. Parkinson’s doesn’t even have the decency to kill you.

Don’t get me wrong; I am not saying that I wish Parkinson’s were a deadly disease. I am just saying that the struggle ahead of us is a long one requiring tonnes of willpower, commitment and support to delay the inevitable. But delay it we will with more and better drugs e.g., agonists; better delivery systems for the drugs e.g., duodopa pumps and rotigotine patches; better surgical interventions such as deep brain stimulation (DBS) or non-invasive ultrasound; better exercise and physiotherapy regimes to establish coordination, flexibility and mobility; better technical devices and tools to assist with our postural stability, balance and tremour issues; and continued research and development of neuroplasticity to repair or overcome damaged or forgotten brain – muscle pathways;   better therapies to overcome the all too many motor and non-motor symptoms and conditions of Parkinson’s including pain.

As death is the overall general theme of this blog, it may seem self-evident that defeating Parkinson’s necessarily means the death of whatever causes Parkinson’s. Oh, by the way, did I mention that we don’t really know what causes Parkinson’s disease? With that sad truth the road to defeat PD seems infinitely long with many unknown barriers. But there seems to be room for optimism.   Many scientists believe that the secret to finding a cure lies in misfolded protein called Prions that do not carry any genetic material. Huh? How can this be? Essentially, scientists believe that Prions can infect, multiply and kill and this is what happens when alpha-synuclein proteins misfold and form clumps of Lewy Bodies in the substantia nigra of the brain resulting in the death of dopamine producing neurons. The resulting dopamine deprived condition is Parkinson’s disease.

So all we have to do is to deal with those nasty misfolded alpha-synuclein proteins. Simple enough, you say? Wait, it seems that we don’t really know why these proteins misfold and after 50 years of research and debate, some scientists are still not convinced that such Prions even exist. Are we a whole lot further ahead? I suppose we are in that science is now focussed on developing a vaccine to kill the misfolded alpha-synuclein as part of a targeted immunotherapy. The Boston Globe, The Beginning of the end? The race for a Parkinson’s cure September 15, 2015 reports that this may be the breakthrough we need. But the most exciting part may be that science has finally turned the corner toward accepting that there are Prion-like diseases that infect, spread and kill. Therefore it should be possible to slow or stop the progress of both motor and non-motor symptoms of PD. This is about as close to saying we are on the road to a cure as damn is to swearing. But why has it taken over 50 years to get to this stage – a stage we think is monumentally ahead of where we were, but still monumentally far away from a cure?

The “stuff” of science is seldom done at breakneck speed. Science plods along for the most part, making small incremental gains that lay the groundwork for other small incremental gains, or sometimes lead to dead ends that are a waste of time and resources. Occasionally there is a breakthrough that sends us light years ahead. Let us hope that the science of Prions is at such a juncture and that the race for a vaccine, and any concomitant financial rewards for such a patent, is the ultimate impetus for success.

Scientific knowledge advances slowly not only because the work of science is most often pedantic and meticulous, but also because it is subject to the forces of politics, the economy, ideology, psychology, and social relations present within society and the scientific community of the time. To understand why Prion science has taken over 50 years to reach a state of “maybe”, read Jay Ingram, Fatal Flaws: How a Misfolded Protein Baffled Scientists and Changed the way we look at the Brain, Harper Collins, 2012. Ingram takes us through the science of Prions from Kuru disease to Creutzfeld-Jakob disease to bovine spongiform encephalopathy (BSE or mad cow disease) to chronic wasting disease to Alzheimer’s to amyotrophic lateral sclerosis (ALS) to Parkinson’s disease. This book could have just as aptly been entitled, While We Know a Lot, We Don’t Know Nuthin’ Yet.

Parky and books IMG_4764

What does the future hold? As Yogi Berra once said, “It is tough to make predictions, especially about the future.” He is also attributed to be the originator of the more popular truism, “It ain’t over ‘til it’s over.” Indeed, predicting the end of Parkinson’s disease is a bit of a mug’s game i.e., it is more likely to end in failure than success. Still, I know some who are adamant that the end is close because there has never been as much research on Parkinson’s in the works as there is now. True, but I fear that it is not the quantity of the research at any given time that is important, it is the capacity to isolate and direct a fatal surgical (or perhaps neuroplastic?) strike at the jugular of the disease.

It’s all about the ‘plasticity’, baby

While many millions of dollars are being expended each year in laboratories around the world to develop pharmaceutical therapies to prevent the development of Parkinson’s, to obviate the symptoms of Parkinson’s, to slow the progression of Parkinson’s, and ultimately to cure Parkinson’s, there is a second approach, neuroplasticity, that warrants discussion.

Norman Doidge’s book, The Brain’s Way of Healing, Viking Penguin 2015 has generated considerable excitement among those seeking non-invasive ways to change and/or heal the brain usually with the application of light, sound, vibration, motion, or electricity.

There are two chapters in this book that are of particular interest to me. The first is on pain and the second is about Parkinson’s disease. As it turns out, I have both. In the first case, a physician (Dr. Michael Moskowitz) uses brain maps of his pain to understand his chronic (persistent) pain. Initially, he focused on the pain in an effort to reduce it but the very processing of that focus resulted in an increase in the intensity of pain because the pain maps enlarge and pain signals are referred to and from other adjacent pain maps. In short, the more the neurons in your brain are activated or trained to fire the more sensitive they become and the more intense the pain becomes.   The result is a neuroplastic process called “windup pain” and is described as “plasticity gone wild.”

So, how does one decrease pain if attempts to unlearn pain fail? Ingeniously, he draws three pictures of the brain; the first depicts a brain in acute pain from a specific site on the body; the second drawing is a brain in chronic pain over a larger area; the third shows a brain not receiving any signals of pain and has the smallest area of the three. To make a long scientific story short, whenever he feels pain, he visualizes the three brain maps and determinedly, doggedly, relentlessly imagines the largest area of pain firing in the neurons as shrinking. He tries to “disconnect the network and shrink the map” through visualization techniques. The smaller the area devoted to pain, the less he feels the pain. Moskowitz claims that this is neither pain management nor placebo effect. Rather, it is truly a neuroplasticity technique that reduces pain perhaps to the point of elimination. Seems crazy eh? But, Dr. Maskowitz and others are adamant that it works.

In the Parkinson’s chapter, a South African man, John Pepper, purportedly beats Parkinson’s disease through purposeful or conscious walking. He was diagnosed as early onset and noticed both motor and non-motor symptoms (tremor, lack of coordination, rigidity, constipation, micrographia, freezing, slowness of gait, among others) as early as when he was 30 years old. In his efforts to “normalize” his gait, eliminate his stoop, maximize his arm swing, and lengthen his stride, he considers each movement in explicit detail and moves with concentrated and purposeful precision. He begins to realize that he is controlling his conscious walking with a different part of the brain from the part that controls automatic walking. Doidge postulates that Pepper was “unmasking existing brain circuits that had fallen into disuse” after depletion of dopamine in the substantia nigra rendered automatic movements inoperative, Pepper’s conscious walking technique activates other areas of the brain to bypass this blockage. In this way, old neuropathways that have fallen into disuse can be reactivated and new ones initiated, meaning that many aspects of Parkinson’s can be overcome.

Pepper’s claims were controversial in 2004 and remain controversial to this day. Much is made of whether Pepper’s Parkinson’s was typical or atypical, some sort of variant, etc. I will leave this point and others related to the science behind Pepper’s approach for others to debate. I agree with Doidge that the important instruction from Pepper is that exercise is beneficial in delaying or overcoming Parkinson’s symptoms. Recent studies are adding support to this statement. The big question that remains is whether Pepper’s concentrated, purposive, deliberate, conscious approach to walking constitutes an example of the healing power of a ‘plastic’ brain.

Accounts of brain plasticity, neuroplasticity, or the brain’s ability to heal itself and reject with finality neurodegenerative disease have me wondering if the death of Parkinson’s disease itself is now possible. Until now, research has focussed on finding the cause and developing a cure alongside pharmaceutical and technical means to alleviate and diminish symptoms and halt advancement. Will we be able to say that death applies to Parkinson’s as much as it apples to every other aspect of life i.e., death to Parkinson’s disease instead of dying with Parkinson’s disease?

If I were a betting man ….

Currently, if I were asked to wager on which approach would bring us closer to nailing the lid on the coffin of Parkinson’s disease, I would gamble that work in the lab with stem cells, Prions and misfolded alpha-synuclein protein has the best chance. Of course, while we may be closer now than we ever have been to that end in the lab, it has taken us over 50 years to reach this point and we are still not certain of the path. Consequently, I seriously doubt that it will happen in my lifetime and I am less certain that it will make a positive medical difference to me personally. Put bluntly, it is too late for me.

On the other hand, if the wager is on which approach will have a better and more immediate payoff for PwP, then I would bet on treatments involving neuroplasticity e.g., physiotherapy, in combination with the development of better drugs, better delivery systems for those drugs (patches, intestinal pumps) and the development of invasive and non-invasive surgical methods such as deep brain stimulation (DBS) and ultrasound. I perceive that these are more likely to have a direct, positive impact on my cohort of PwP and me personally.

What do I fervently wish for? My fondest dream is for science to render Parkinson’s dead through the development of the means to both prevent and cure this insidious disease – a disease that has no Soul but steals Souls with frightening regularity. When it comes to Parkinson’s, mortality is infinitely preferable to immortality. I just what to know what those other life strategies are? The book I rejected as cottage reading is floating back to the top.

Caveat

The stories recounted here are real and form part of my personal experience. My sole original purpose in telling them was to expose both the complexity and simplicity of death and dying. But wouldn’t you know it; death is funny in that you never know what is simple and what is complex. It is very similar to Parkinson’s disease in this respect.

 Any interpretations and observations as to the existence of a Soul, Life Force, Spirit, etc. are strictly my own. I cannot warrant the verity or accuracy of any philosophical or religious reflections that may, or may not, bear resemblance to any organized body of work or thought.

Post Script Script

This could be a Marx Brothers script:

Groucho: (working his eyebrows) Was that a caveat or a cadaver? Has anyone seen an organized body around here… or even a disorganized one?

Zeppo: (Toots his horn)

Groucho (Looking lasciviously at the nearest woman): And, what’s that you say, “Immortality?” I thought you said “immorality” and I am just your man – if I live long enough.

Yogi Berra (hey, how did he get in here?): If you live long enough, it will be “déjà vu all over again.”

Groucho (stealing Yogi’s line): Well then, the future ain’t what it used to be.

Zeppo: (Toots his horn.)

The PD Gardener (now this is getting weird): I never promised you a rose garden…. Wait a minute! I did!

(Groucho works his eyebrows vigorously)

The PD Gardener:  I apologize. Earlier, I promised to forget the Marx Brothers. But like bad clichés, they have a way of coming back, and like Parkinson’s they never really die.

(Fade to black)