Short, Pithy and/or Pissy Posts No. 3 : My Answers

Short, Pithy and/or Pissy Post No. 3: My Answers

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A reader called me the old fashioned way the other day, on the telephone, to tell me that I must answer the questions I left dangling in SPPP No. 2. I hate that because it is a lot easier to ask questions than to answer them. Well, here are my answers.

Question: Are there any songs about bleak towns?

Answer: Yes, but my two favourites are both by Bruce Springsteen, My Hometown and Death to my Hometown with its compelling Celtic rhythm and lyrics accusing and convicting corporate power of bringing certain death to his hometown without the use of guns or bombs and without penalty. Released in 2012 Death to my Hometown updates My Hometown, which presciently paints a poverty-stricken future from the vantage of 1984 economic and trade policies. Together these song-writing gems form a powerful political analysis spanning four decades. The analysis is bleak and is no longer “the future” but “the present” for many towns in Canada and the USA.

Question: My future’s so bleak I have to wear [fill In blank.]

Answer: [A SAD light.] Seasonal Affective Disorder (SAD) is a problem for many who live in northern climates. Long dark winters can cause general depression (winter blues) in some individuals. I believe my mother’s circadian rhythm was sensitive to changes in natural light living as she did in northern Manitoba where the average hours of sunlight decrease from 280 in June to 85 in December and in central Saskatchewan where the decrease from an average of 375 hours in June to 75 hours in December is even more striking. SAD lights are an attempt to mimic natural sunlight alleviating symptoms for suffers.

As a slogan or hook, “I have to wear a SAD light” is an utter failure as it fails to tickle whimsy or to stir the body and mind to overcome adversity. Perhaps manufacturers and retailers of SAD lights will be happy but I just don’t see the marketing attraction myself. The bleakness in Springsteen’s passionate lyrics and music can be overcome only by changing the balance of class power as intersected by the politics of the struggle for fundamental human rights.

Question: Did I choose the path with Parkinson’s or did it choose me?

Answer: No one in his or her right mind would take an oath of fealty to Parkinson’s disease if s/he had even half an idea of what that would entail. Parkinson’s is an insidious disease that slowly and surely sucks life and independence from you and does not have the decency to kill you. I am but one of over 100,000 Persons living with Parkinson’s (PwP) in Canada and while I have suffered from the predictable decline in health for a relatively short period of time compared to many others, I assure you that I am not being overly dramatic about its effects. Walk one day in my shoes ….

Question: What happened anyway?

Answer: An interconnected series of expected events and experiences that were to be my life were nudged off course and shunted to the sidelines by an unexpected series of events and experiences that became my life. It is a happy story except that Parkinson’s threatens to write a difficult ending.

Question: Maybe it’s a Town Without Pity (Gene Pitney 1961)

Answer: In 1961 Gene Pitney’s Town Without Pity was riding a wave of middle class economic prosperity. Love and the politics of the Vietnam War were at the centre of teenage angst. The hollowing out of the American industrial heartland that spawned Springsteen’s two ‘hometown’ songs was not yet upon us. That is not to say that Town Without Pity was shallow but it is to say that the dialectic between capital and labour was not manifest as class politics in the 1960s and frankly has been barely on the radar since then. US President Trump’s election unearthed an irreverent populism with ad hoc nationalist and dictatorial tendencies. In Canada we have emerged from a decade of right wing politics to embrace once again the soft middle. If we are honest, the political mood in both countries is closer to Town Without Pity than it is to Bruce Springsteen and Death to my Hometown.

Another reason I like Springsteen: he has made 11 “surprise” appearances at the main concert of the Light of Day Foundation, which has raised more than $4 million for Parkinson’s research over the 17 years of their winter festival in Asbury Park. See also Light of Day Canada.

(749 words)

© Stan Marshall (The PD Gardener) 2017

Short, Pithy and/or Pissy Posts: A new feature

Short, Pithy and/or Pissy Posts is a new feature on this site devoted to well … “Short, Pithy and/or Pissy Posts” about Parkinson’s, gardening or anything really … but uncharacteristically for me, I have to say it in 750 words or less!  It is all explained in the first post which you can find here:  Short, Pithy, and/or Pissy Posts

Have a great weekend!

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?

IMG_3925

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

_____________________________________________________________________

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

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.)

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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?

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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.

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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

In Altamont, Living to be 100 is Old Hat or Will you still need me, will you still feed me, when I’m 64?

Author’s Foreword

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It happens sometimes that people are overlooked. They shouldn’t be but they are. I was looking at some old photos the other day and it occurred to me that in my last blog post I unintentionally neglected another centenarian, a remarkable woman who just happens to be my daughters’ great, great aunt (my ex-wife’s great aunt to be precise.) So it is that Jean Madill joins Jemima (‘Aunt ‘Mime) Wilson, Mary Anne Scoles and Mary Armitage as centenarians I have known.  Jean was not only a contemporary of these three women but she shared that same four-mile geographic proximity to Altamont, Manitoba. The probabilities of a convergence of people (all women in this case) who live to be 100 or more years old within the same locale must be pushing the boundaries of something more than mere coincidence. If living to be 100 years old is getting to be “old hat,” then I would like my old hat to join that select grouping in another 33 years!  It seems a little premature to celebrate that occasion just yet given that I am a Person with Parkinson’s (PwP) and have other health problems… but you never know.

This post has taken me eons to write. I thought it was going to be a quick exercise to correct an oversight but it has turned out to be an excursion into social and health policy on care and care giving for those with chronic conditions. Many of these thoughts were sparked in a round about way by memories of Jean Madill, some were honed with the assistance of my friend Selma Garten and some were rekindled in recent days with the passing of my cousin, Bob Marshall, after a long battle with Parkinson’s and dementia.

But I have to start somewhere so let me give you the lowdown on Jean Madill and how her story relates to the importance of family, ideology and public policy in determining how and where we live out our “golden years.”

Jean Madill

Born: December 14, 1905 in Altamont, Manitoba

Died: November 6, 2006 in Notre Dame de Lourdes, Manitoba (100 years 325 days.)

Father: R. W. (Wes) Madill. Born February 5, 1871 in Ontario. Died: July 3, 1944 in Altamont

Mother: Jane Elizabeth (née Maloney) Madill. Died: June 15, 1955.

 

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Jean Madill (L.)  Sadie Wilson (R.)  In Sadie’s grocery store. Photo: S.Marshall c. 1982

Why have I been thinking about Jean? Is it that she joined that select club of being a woman centenarian who lived in Altamont?  Partly I guess, but that is not the whole of it. Jean was a unique individual who lived a unique life in unique circumstances. To be blunt, she was a character who would have had to be invented if she did not exist in real life. She deserves to be accorded a special place in the recorded annals of Altamont, Manitoba. Unfortunately though, I don’t find much of her in those records.  Maybe I am not looking in the right annals?

Please bear with me while I think this through a bit. You see, I knew Jean mostly during the 25 year period after she turned 50 years of age.  Minor arithmetic will tell you that while I am able to relay some of my own personal memories and thoughts from the time period I knew her best, I can only touch indirectly upon her first 50 years and her final 25 years.  Still,  Jean’s life has me thinking about care for the elderly, disabled, mentally ill and those with chronic health problems.  She provides a springboard for a discussion about the ideology, values, and the evolution in treatment for those with mental health problems and the pressing need in today’s society for care of the elderly with or without chronic health complications.  Prior to retirement my job required me to be knowledgeable about health policy and the politics of health care.  Now, I am a Person with Parkinson’s (PwP) and these matters are much more in my face in a very personal way.

No memories are insignificant 

I feel it is only fair that you should know that my recollections of Jean and others have been processed, filtered and stored in my cerebral cortex waiting for the appropriate stimuli to unlock them.  I am not certain how memories are for others but mine do not flow over my brain like a smooth, soothing stream of healing water.  No, any particular memory making its way through my brain crashes against the folds of my cerebral cortex  and against other memories. The energy released from these collisions is what I call ‘gray energy’ inasmuch as it emanates from the intersection of the gray matter of my brain and the gray areas in my memory.  This ‘gray’ energy has an irradiance and illuminance enabling the “mind’s eye” to detect subliminal images within the darkest recesses of the cerebral cortex.   [Sorry to disappoint you but ‘gray energy’ in this context has nothing to do with the burning of fossil fuels, and ‘subliminal’ has nothing to do with whether you are unknowingly being tempted to buy popcorn at the concession in the movie theater.]

Memories are critical to how I interpret the world and releasing them is sometimes a curious procedure.  Although the process I outline above seems rather ad hoc and perhaps chaotic, I don’t believe that ‘Chaos Theory’ plays any role in the formulation of my beliefs i.e., in my brain there is no equivalent of a butterfly flapping its wings in Brazil, creating (or preventing) a hurricane in Texas.  While my heart may flutter from time to time for good reason (perhaps romantic, perhaps physiological) and my dopamine deprived brain will challenge my equilibrium, my perception of the world remains firmly rooted in whether ‘facts’ and memories line up. You see, I don’t believe that my memories, even seemingly insignificant ones, are ad hoc.  Memories surface in a never ending human quest to understand and explain our existence, and in our innate drive to improve our lives (not just individually but also collectively.)

The more memories of Jean Madill rise to the surface, the more I realize that these particular images lead to substantive questions of social policy and social change. How does society care for those who have chronic and long term illnesses?  Who has the financial resources to meet the level of care required –  the state, institutions, communities, families?  Who has the capacity to ensure that the burden of care giving does not weaken and destroy the structure of support around those who need care?   Can a rose with a cloying name assist in understanding the values of a caring society?  What does the stigma of mental illness have to do with anything?  Some of these questions may appear to be unconnected but often the circuitous ‘milk run’ is the best way to see the incredible beauty of the countryside … or if you love train travel you will have the advantage of observing the backbone or the back side (some say backside) of every community.

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Altamont 1905   Photo from Memories of Lorne 1880 – 1980.

The photo at the left shows the main street of Altamont in 1905, the year Jean Madill was born. Only the United Church building (white A frame building at left) remains today. The train tracks cross the photo at the bottom.

Children of the 1950s

I will begin my journey with a brief look at children in 1950 rural Manitoba. When I was a child we would tease Jean Madill. I don’t recall it being malicious teasing and there were many occasions when I remember Jean laughing at a trick or two she played on us.  Still, you know how seven and eight year old boys behave sometimes – fuelled by a mixture of underdeveloped (not undeveloped) testosterone, a surfeit of bravado, boundless mostly misdirected and misguided energy, powered by a brain roughly equivalent to that of a chimpanzee, making for unpredictable and borderline acceptable social behaviour.

In the 1950s these chimpanzees … er … children were set loose to run unsupervised up and down the main street in Altamont on a Saturday night, the night when both farm and town families ventured into the stores to shop for groceries, get a haircut, skate or curl in winter, visit with friends and those acquaintances who lived farther away, and for the men to disappear into the Altamont Hotel slaking their chapped lips and dusty Souls with a few drafts of beer, away from the prying eyes of wives and other busy bodies. [Hey, I am just calling it like it was.] In other words, the adults were busy and the chimps … er … children had slipped their minders. A friend of mine used to categorize children as being “rug rats” until they could run and climb at which point they became “yard apes” or “street monkeys.” I guess we were the latter.

Sometimes the street monkeys would hurl taunts at each other and tease anyone who was different or appeared vulnerable.  Animal behaviours can rise to the surface in uncontrolled situations.  Jean Madill was one of the vulnerable and we (I am admitting my culpability here) would race past her chanting

Jean, Jean made a machine

Joe, Joe, made it go

Art, Art blew a fart

And blew the whole damn machine apart.

I guess you have to be in Grade 2 or 3 to appreciate how close this is to genius poetry for a seven-year old … well, a seven-year-old boy anyway.  Obviously, this little rhyme has been around since the 1950’s as I personally recall using it during those years. It was reprised with widespread attention in 1987 as “Zed’s Poem” in Police Academy 4: Citizens on Patrol. However, the rhyme is a variation of this older version originating in the 1920s.

Gene, Gene, made a machine

Joe, Joe, made it go

Frank, Frank, turned the crank

His mother came and gave him a spank

Sent him over the river bank. (See note 1)

Of course, as we were chanting it directly to our Jean Madill, we always thought the rhyme referred to “Jean, Jean” and not “Gene, Gene.”

Mental illness or mental health?

Why were we teasing Jean Madill?  That is a very good question with a not very good answer, I am afraid. Today, we would probably say that Jean had a mental illness or disability. It may even have a name although I don’t know that it does.  In the 1950s such conditions were described in common parlance as crazy, loony tunes, nuts, crackers, whacko, or some other not very helpful appellate. Not very adult I know, but at what age does adulthood begin? [When do street monkeys become sentient human beings?] As a corollary, is it too much to expect children to be adult? Whatever the answer, it is never too much to ask adults to be adult and the fact that many adults also said these same insensitive things is telling of both the “adults” and the times. Very often, people of that day did not address mental illness openly or compassionately and it was almost impossible to escape the stigma attached to it.

Looking back on it, I do sometimes think that maybe we children were a slight bit more adult than I give us credit for being.   To the best of my recollection, I never heard children say Jean was a “retard,” an “imbecile,” a “moron,” an “idiot,” or a “lunatic.“ Ironically, these were names we reserved for our close friends or those with whom we wanted to be friends, but weren’t.  It turns out that sociologists and criminologists studying deviant behaviour and government social policy experts and administrators had already reserved these names for use in their professional studies. Individuals were placed in “lunatic asylums” or “insane asylums” because they were “criminals,” “dangerous,” “maniacs“ or better yet, all three.  I cannot imagine that any of these descriptors were seriously applied to Jean Madill.  I certainly never saw her this way.

Most likely, we did not call Jean those names because Jean, 45 years older than we were, was not in our cohort.  She was of our parents’ and grandparents’ generations. We knew she was “different” but none of us perceived her as a threat. She was a benevolent figure from another dimension in our dramatis personae.  I have to be careful here not to leave the impression that we somehow were “enlightened” and should be applauded. Save your applause.  Consciously we weren’t but underneath our chimp behaviour lay a child’s inherent trust – not always to be relied upon but in this case a good barometer.

I have not read extensively on the subject of mental health but what I have read indicates that “mental health” as a concept was not in vogue at the turn of the 20th Century.   Put another way, mental illness had not yet been re-branded as mental health.  In fact, the first Mental Health Week in Canada was declared only in 1951, a full 46 years after Jean Madill was born. At the time Jean entered this world,radio was still two decades away from being the latest craze and the widespread use and ownership of television sets was even further away. Social media campaigns such as Bell Let’s Talk Day were unheard of and it would be almost fifty years after the first Mental Health Week before the Internet and social media would provide a platform in the struggle to end the stigma of mental illness; to highlight the need for access to care and services; to provide guidance for workplace mental health initiatives; to fund research on treatments and cures; and to support community organizations in their local programs and services.

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The 2016 Bell Let’s Talk Days raised an astonishing $6,295,764.75 from 125,915,295 calls, texts, tweets and shares. Since 2010, the total contribution is approaching $100,000,000 to mental health programs. We should be encouraged by the support this campaign has received but we have to wonder why, more than 110 years after Jean Madill was born, the conversation about mental health remains so difficult and illusive.

The language of mental health

As a child the most charitable thing I recall hearing in relation to Jean Madill’s situation is that she had been studying to be a nurse when she had a “nervous breakdown” (see Note 2.)   I was eight years old and I was not exactly sure what this phrase meant. I am not sure I know even now. I do know that the term is not a medical one and it does not refer to a specific condition. In general, it describes a period of stress (usually temporary) where a person is not able to function normally in daily life. Everything just becomes too overwhelming. (See Note 3)

What is mental health anyway? About 30 years ago some friends were visiting with their precocious five-year-old daughter. Let’s call her Abigail.   Abigail and I had been dispatched to the corner store for some milk and as we walked she started a rather serious conversation about how she was feeling. She suddenly stopped walking, stood back, put her hands on her hips, looked me straight in the eye and announced quite pointedly, “I have had several mental breakdowns, you know.” It took me by surprise and I snorted a little laugh before recovering quickly to say sympathetically, “That’s too bad but I understand that you grow out of them.” Almost immediately she switched to another subject and nothing more was said about her breakdowns. When I relayed this story to her parents later that evening they laughed and explained that “temper tantrums” in their family are referred to as “mental breakdowns.” It seemed reasonable at the time but now it has me wondering where temper tantrums fit in the typologies of disorders in relation to depression or anxiety, and whether ‘tantrums’ could ever constitute an inability to function in daily life, or at least be a symptom of mental illness, an indicator of things to come.

I can only imagine that my own parents and other family members must have wondered about my early childhood behaviour at times. Some of my very earliest memories involve throwing temper tantrums when I didn’t get my way. I recall one occasion when I threw a huge tantrum, a performance worthy of an Oscar – full out crying/wailing, foot stomping, yelling, and screaming. I don’t recall pitching anything but I may have.  To make matters worse we were at my aunt and uncle’s house and I am certain my parents were mortified by my behaviour.  I recall being banished to a quiet room from which I escaped to hide in the car because my parents were going to go into the city and weren’t going to take me!  The forgoing “drama”unfolded but I feel compelled to reserve more specific details for another blog posting – or maybe for the next time I have an opportunity to occupy a therapist’s couch!

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The PD Gardener c. 1952   Photo: R. B. Marshall

My point is that the language of mental illness and mental health is tricky and in Jean’s case categorizing the problem as a “nervous breakdown” seemed carefully designed to project 1) an impression that Jean had been “normal” but had some sort of mental collapse from which she was not able to recover; 2) that she was intelligent and studying to take on a respected and important professional career; and 3) she was to be treated with kindness and respect.  Aside from some teasing and mild harassment by unthinking, uncaring, and unaware chimpanzees/children, I perceive this to be the case but I am certain there were undercurrents through the community that were not as innocuous. You would think that something unsavoury had to have happened in the 100 years of Jean’s life, but if it did, I don’t know what it was.

The changing landscape of mental health

When the Manitoba Asylum at Selkirk, Manitoba was built in 1886, it was the only facility on the Canadian prairies with separate facilities to care for the mentally ill.  It shouldn’t surprise anyone that overcrowding was an issue almost immediately.  As a result, a “Home for Incurables” was established in Portage La Prairie and in 1891 a second asylum opened in Brandon. By 1914 there were about 1,500 patients in the three Manitoba facilities combined. While it is true that more attention was being given to mental illness, care for patients was not well understood and both psychiatry and psychiatric nursing in Manitoba were still at rudimentary stages. The nurses’ residence did not open at the Selkirk Hospital until 1926 and it wasn’t until 1960 that Psychiatric Nursing was established as a separate professional entity in the province. But by 1950 the number of patients in psychiatric hospitals in Canada ballooned to over 66,000.

The distinction between a mental health concern and a mental illness [a mental health concern becomes a mental illness when ongoing signs and symptoms cause frequent stress and affect your ability to function, see Note 4] was not well understood nor were the wide variety of symptoms and behaviours. People did seem to understand that stress, a traumatic life experience, an abusive relationship, brain damage, chronic medical conditions, or drug an alcohol abuse might cause mental illness.  Even so, there was often disagreement on treatments and availability of treatment was not guaranteed.

Have mental health matters become more clear in a present day world?  I am not sure, as there is a bewildering array of concepts joining the aforementioned “nervous breakdown” and “mental breakdown,” challenging the layperson to keep abreast. Just what are the differences and similarities among concepts such as mental illness, mental disability, mental impairments, mental retardation, learning disability, psychiatric disability, intellectual disability, anxiety disorder, mood disorder, depressive disorder, affective disorder, seasonal affective disorder (SAD), schizophrenia disorder, dysthymia, obsessive compulsive disorder, post-traumatic stress disorder, to name a few?  I do understand that specificity in definition is required to advance science but sometimes in the interests of awareness, simplicity works. Mental illness comes in many shades and shapes and when a mental illness interferes with the performance of major life activities, such as learning, working and communicating, etc. it is a disability.  (See Note 5)

So it was that Jean Madill was a young adult in the 1920s with a mental illness/disability. Available facilities for the treatment and care of mental illnesses were nascent and poorly equipped to classify patients, never mind actually treat them.

The changes in the name from “Goal” (sic) [I assume it should be Gaol,] to “Manitoba Asylum”, to “Selkirk Insane Hospital” [1910], to “Selkirk Hospital for Mental Diseases”, to “Selkirk Mental Health Centre”, reflect the changes in attitude, philosophy and function that mark the course of progress in the care and treatment of the mentally ill. (See Note 6)

These name changes coincide with a policy to shift care from institutions to community in the 1950s in an attempt to eliminate or at least soften the negative effects of institutions. New and better medications, approaches that stressed rehabilitation, and a program of foster care for children during the 1950s and 1960s, dramatically reduced patient populations in institutions. Institutions did however pick up the pieces when families and/or communities failed or where the patient was not suitable for placement in the community.

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Genevieve Evangeline (Eva) Marshall   Photo credit and date unknown

[Interestingly, my Aunt Eva Marshall played a key role in many children’s lives as a foster parent during this time period. I recall meeting several of her foster children when I visited with my cousins during summers at the Brandon Experimental Farm. While there was some “drama” from time to time, I do not recall any interaction as being upsetting … or uplifting for that matter. It just was.]

Two cases from the mental hospital grounds: Jessica and the King of Prince Edward Island

In the late 60s and early 70s, I played hockey in Brandon and Selkirk which coincidentally were the locations of mental hospitals in Manitoba.  In Brandon my teammates and I would often go to the grounds of the mental hospital to play soccer, Frisbee, baseball or just hang out on nice warm spring days.  Often, we would encounter staff and “inmates” as we called them from the hospital. I was totally ignorant about almost every dimension of mental illness. I recall being very surprised to encounter the teenage granddaughter (let’s call her Jessica) of some people I knew. I met Jessica on several previous occasions at her grandparents’ house. Apparently she was well known to my friends as someone who was being treated as an outpatient at the Hospital and liked to engage in sex talk.

The few times I saw Jessica on the Hospital grounds we were with our respective groups of friends – all girls in her group, all guys in mine. I recall the encounters as hyper – dramatic, foul – mouthed displays of aggression graphically punctuated with shouted litanies of various sex acts and behaviours.  It was not the innocent, humorous and flirtatious banter between teenage girls and boys intent on striking up friendships and romances or even temporary sexual dalliances. Jessica and her gang never escaped the collective persona of a slut. What was the collective persona of the gang I was with, you ask?  Good question. We were probably closest to a tormentor, willingly providing the stimuli, the mean teasing, and the suggestive contexts for the sluts to hurl the filth that we wanted to hear.  I don’t know if we took Jessica’s gang down to our level or vice-versa but the fact is that we were both at the same low-level level – so far down that no lower level could be achieved without physical contact.  But to my knowledge, no relationships, sexual or otherwise, ever developed between members of our groups. It seems weird but we always parted somewhat amicably as our ‘fuck you’ and ‘fuck off’ goodbyes and other creative invective hurled in both directions were pinned in the air like corsages and boutonniere to be cherished forever as keepsakes.

I was accustomed to crude behaviour as it is the norm among young hockey players but I have to say that these experiences with Jessica and her friends rattled me a little. Don’t get me wrong, I wasn’t a saint by any means but I was fresh off the farm so to speak and had never encountered such explicit behaviour in girls. I suppose Jessica might have been concerned that I would rat her out to her grandparents but I doubt that this was a major issue. She needn’t have been concerned anyway as I didn’t know them well enough to broach this topic, and I can’t imagine what I would have said to her grandparents that would have been helpful to keep the conversation going. “Oh by the way, I saw Jessica on Saturday and she asked me to …. “ I don’t think so! Besides, it has taken 50 years for me to even let it rise to the surface. I never saw Jessica after those few encounters that summer.

In Selkirk, several of my friends worked at the Selkirk Mental Hospital. Sometimes a few of us would go to the manicured green spaces of the Hospital to beat the summer heat. Often we would encounter a friend who was on the grounds working with a patient or two. I don’t have very fond memories of those occasions. From my perspective there was always an element of the unknown, a concern for safety, and there was an undercurrent of ridicule and nastiness of staff and visitors towards patients that sometimes surfaced in ways that were seemingly innocuous, but were anything but innocuous. At the time we thought it was funny to ask one particular patient repeatedly, “What is your name?” And when the patient answered just as predictably and repeatedly, “The King of Prince Edward Island,” we would laugh uproariously. Like small children we, including the patient it seems, never grew weary from the repetition and only stopped when the orderly ordered us to stop. While hospital staff was complicit in these exchanges, to their credit they were the ones who knew to draw the line when our games became too harassing.

I am not sure if either the Selkirk or Brandon Hospitals were options for the Madill family in their search for treatment for Jean. I would be surprised if there were not inquiries and/or consultations. However, I am not privy to this information and while I am interested from both an academic and a personal perspective, these details are not germane to the story I recount today. Suffice to say that by the mid 20th century the paradigm for the delivery of mental health programing had shifted from institutions toward community and family.

The importance of family

The Madills had roots deep in the community going back to the early 1890s.  R.W. “Wes” Madill married Jane Elizabeth Maloney in 1894 and went to Altamont from Austin, Manitoba to manage a retail store owned by his uncle John Sampson.  Wes would buy the business in 1902 and run it for the next 28 years.   On the Maloney family side, Elizabeth’s father, Henry, came to Altamont in 1890 and was Postmaster from 1907 – 1920.  Prominent in business and public service, both families were well known and respected throughout the community.  [Coincidentally, my own father was the Postmaster from 1955 – 1972.]

Those deep roots and the relationships that grew from them would cement Jean’s path in the future. In essence, the family pulled its own ‘safety net’ tightly around Jean such that she was able to live her long life in relative dignity in the same small community where she was born – a claim few others can make.

Jean had three brothers. Clifford married Jessie Skinner; Gordon married Fanny Acaster; and her twin brother Ken married Elsie Snowdon. Her two sisters were Mabel, married to Jim Dean, and Grace who married Jack Shellard. Cliff and Gordon continued to live locally and I recall the others were in contact regularly.  Over the years these siblings, their partners, extended families, and other community members provided a safe haven for Jean – one that permitted her not just ‘to survive’ or ‘to exist’ but ‘to live’ with some form of dignity.

To be blunt, providing care for someone with a long term illness requires considerable financial resources irrespective of whether the care is provided in an institution, the community or by the family.  My understanding is that one source of financial support for Jean was her parent’s estate. Her father, Wes Madill, died July 3, 1944 at age 73 when Jean was 38 years old and she was 49 when her mother, Jane Maloney Madill, died on June 15, 1955.  No one could have guessed that Jean would live to be almost 101 years old, outliving her immediate family members and most of her contemporaries in the community.

The Madill estate included some income-generating property such as the “Madill Block” established on Altamont’s Main Street at the turn the 20th century. Unfortunately the store was destroyed by fire early in the morning of December 3, 1905. The loss of the store and stock was valued at $10,000 and was insured for only $6,700 but Wes continued to operate the store out of the Maccabbee Hall [another interesting topic for a future blog post] until 1907 when a new building was completed. The risk of fire must have been very high in these communities [I plan to explore this theme of fire in future blog posts] as on a Sunday morning in May 1923 fire levelled Madill’s store once again. And, once again Wes Madill operated the store from another property until he could rebuild. The business was finally sold to George Bishop in 1930 but I believe the Madill family retained ownership of the Block.

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Photo showing the Madill Block in early 1950s. Fire would soon destroy the hardware store at the left. Photo: unknown

In the 1950s the Madill Block had two competing grocery stores coexisting side by side on the street level. (I remember my dad telling me that we should patronize each store to an approximate equal amount.) There were also three or four apartments on the second floor. The Block has specific memories for most children of my generation. It certainly does for me. The very first time I watched television was in Orville Bishop’s apartment in the Block. Orville was a bachelor farmer who moved to town and he owned the first and only TV in the community at the time. Along with his farming and bridge playing buddies, he watched hockey on Saturday nights but on Saturday afternoons, Orville’s apartment became the local cinema as his door was open for us to watch Horse Opera.  We huddled around the small black and white screen where Roy Rogers, Gene Autry, Zorro, Rin Tin Tin, Wild Bill Hickok, Hopalong Cassidy, Wyatt Earp, The Lone Ranger, Maverick, My Friend Flicka, The Rifleman, Texas Rangers, The Last of the Mohicans, and others were central to our socialization into a culture where good guys wore white hats and bad guys wore black hats – and women played subordinate roles …. and everyone used guns. How did we escape this experience to become enlightened adults? … or did we?  Another topic for another day …. but right now we should return to the key figure in this story.

‘Stick it where?’ money

Jean Madill also lived in an apartment in the Block for quite some time; her small quarters piled high with papers and magazines. She subscribed to one of the Winnipeg papers – I am not sure which one but it was clear later in my life that if you were a Conservative you subscribed to the Winnipeg Free Press and if you were a Liberal you subscribed to the Winnipeg Tribune and maybe the Star Weekly. If you were NDP, you subscribed to the Toronto Star Weekly, and maybe the Tribune. I remember my friend R.W. and I reviewing the results of the Altamont poll after an election. We discovered that three people in the poll had voted NDP. We knew who two of them were but couldn’t place a name beside the third NDP vote. I think I know who it was but without absolute proof, I leave it a mystery. Anyway, I am not sure how much Jean knew about, or cared about, politics but I do know she read the papers – and then kept them in her apartment.

Family members dropped by from time to time to take Jean to a neighbouring community for lunch. She enjoyed such outings but before she returned other family members had swooped down upon her apartment, taken the reams of paper and cleaned up. Her place was nice and tidy again. Jean of course would be mad as a hatter and would curse at everyone involved. She sometimes remembered from one time to the next and would refuse to go for lunch at the next invitation … but mostly she liked to lunch and the ritual would continue – swearing and all. I like to think that she played the game and played her family, but who knows? Whatever the case, her family was doing its best to look after her interests.

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Desolate winter view to the west. Post Office is on right. The “A” frame building is United Church.  Photo: S. Marshall 1982

When Jean began to receive Old Age Security, she enjoyed the freedom of having money over which she had some control. In fact, she occasionally offered money to family members for cleaning her apartment or for inviting her to lunch or dinner. Sometimes she left the money later, under a vase or lamp, upon visiting that person’s home. Of course, family members would not take Jean’s money, and Jean, feeling the power of her independence would retort indignantly, “Well, stick it up your ass then!” Others are in a better position to confirm this story but I understand the money was kept to offset Jean’s unforeseen expenses and/or future needs. The money accumulated and it was commonly known among family and friends as “Stick it up your ass money.”

Cookies and commerce

When a new friend Bruce and his family moved to Altamont from Winnipeg, we played at their apartment and in the hallways of the Block, and Jean would often invite us into her apartment or sometimes a group of kids would knock on Jean’s door. We would crowd in when she answered and stand in a small clump (there were no chairs or couches free of papers or boxes) and she would offer us cookies, or bread with uncoloured margarine the same as Aunt ‘Mime would, except the bread was not as appetizing. In fact, Jean was most often very apologetic as she proffered treats, “I am sorry that I don’t have much to give you but take some of these cookies, they’re going mouldy anyway.”  My recollection is that we always ate what was offered and none of us suffered any negative consequences.

When I was about 10 years old, dad put me to work in the confectionery which was separated from the Post Office by a thin half wall of 2 x 4 studs and plywood with wire mesh to the ceiling. To get from one side to the other you used an interior particleboard door which had no lock. I remember my father laughing after the Post Office had been burgled (it was robbed more than once) that the crooks took time to smash the door down when all they had to do was turn the handle. Before I get side tracked on the history of burglaries in Altamont (fodder for another blog), let’s return to Jean Madill.

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Altamont Post Office, Confectionery and Bus Depot    Photo: unknown

Jean usually made the short walk (about 75 meters) to the Post Office each day to pick up her mail after which she would often purchase a treat in the confectionery. In order to pay, she would search through a big shopping bag pinned to her sweater or coat to retrieve another smaller bag containing a smaller purse, and inside the purse was a small plastic change squeeze. She would dig out her 25 cents for payment and then patiently return any change (yes, change from 25 cents!) to the squeeze purse that was then returned to its assigned space deep inside the succession of bags. Sometimes, there were more bags than at other times and it may not have been the height of fashion but it was a security system that seemed to work, as I don’t recall her ever being burgled.

Squeeze change purse

Squeeze change purse

Fashionista meets the fashion police

Jean was also a bit of a fashionista – maybe a “victim of fashion and accessories” (with a nod to Carol Pope and Rough Trade.) Given the multi – bag design of her purses, you might think that Jean is the classic homeless “bag lady.” You would be wrong.  She did not carry an excessive number of bags, just enough to keep her money safe and she lived in her own place in the Block and in the iconic Altamont Hotel after the Block succumbed to a declining rural economy, losing its tenants, and falling into disrepair and disuse.

Jean was rarely in accordance with fashion trends and charted her own course. She loved interesting clothes and different colours. As I recall she particularly liked to wear leggings, pants, skirts, blouses, sweaters, scarves and jewelry in any combination or number, in colours that were appropriately gaudy and outrageous, incorporating dots, stripes, checks, paisley or any other pattern, the permutations and combinations of which were seemingly limitless. This was haute couture a la Jean Madill.  I am not sure where she purchased her clothes but there has to be a story there. In the end though, the colours per se were not the problem. No, it was her style and the way she wore clothes that led to most of her transgressions with the Altamont fashion police.

In the mid 1960s she caused some consternation when she began to wear maternity tops – much cooler in the summer she reasoned. Fair enough, but generally speaking unless you were pregnant, it was not acceptable to wear maternity clothes, reasoned the local fashion police and others who had influence in her life.

Hott pants

Don’t forget though that this was the late 1960s and early 1970s (I never liked the exactness of defining cultural eras according to the precise numerical value of any decade i.e., 60s or 70s) and “fashion” for teenage girls ranged from headbands to hot pants and ponchos to peasant blouses. I waffle (not the NDP waffle) back and forth as to whether fashion was always a year or two (or ten) behind in rural Manitoba compared to the big centres or if some fashions just bypassed us altogether. In any case, I recall a group of local teenage girls headed “across the line” to Fargo and Grand Forks, North Dakota for a little shopping trip one spring. The teenagers returned with peasant blouses that to the entire world looked just like maternity tops … and they weren’t pregnant … were they? … Well … I am pretty sure they weren’t…. Maybe Jean was ahead of the curve on this fashion trend…?

Fly-fishing

The fashion police worked overtime to watch Jean even as others made fashion faux pas after fashion faux pas. I have to say that the attention was not always unwarranted. Somehow this question arose in Jean’s mind: Is it acceptable for a woman to wear men’s jeans with the fly undone during the summertime?

“A lot cooler,” Jean reasoned, and she was the first to sport this fashion statement on the streets of Altamont.

“Likely true,” the norm setters (if not trend setters) replied, “but it does fly (so to speak) in the face of community standards.”

Jean, I have to agree with them on this one. It doesn’t matter who you are, you don’t go around with your fly unzipped. Why do you think men have developed surreptitious ways of checking to see if the fly is all the way up? And even then we miss it sometimes and have to be reminded by someone who walks up with a big smile on his/her face and says, “What does an airplane do?” That is your clue to surreptitiously place your hand on your belt buckle, let your fingers drop ever so slightly as to sense the openness or ‘closedness’ at the front of your pants. Some people call this manoeuvre “fly fishing.” If it is open, you abruptly execute a pirouette (if you are very adept) or a demi – rond (if you are not so adept) pulling the zipper up as you do so, your whirling body providing diversionary cover for the covert action of nimble fingers. However, if your zipper is closed, someone has played a trick on you. Embarrassing one way but funny the other way, although it is infinitely more embarrassing when they don’t tell you and you walk around for a large portion of the day with your fly wide open as if airing the family jewels. As I grow older and more forgetful, the more important it has become for Anne to take seriously her duty to give me the once up and down every time I come back from the restroom or leave the house. I believe that all men need a zipper monitor. It was recently reinforced to me that if I slip up and don’t zip up, I am left to walk around the Christmas craft show most of the afternoon looking like Baaaad Santa. Remember: “Zip it” is more than just code for “keep your mouth closed.”

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Belt Buckle commemorating Altamont’s Centennial  Photo: The PD Gardener 2016

What can we draw from these observations about fashion? Oh boy, I might find myself in trouble here. I offer some possibilities: 1) Fashion is not fashion for everyone; for one thing it has to be age appropriate. If that is the case, Jean, you are out of luck. You were on the wrong side of the age watershed for clothes that can double as maternity as well as peasant blouses. 2) Perhaps those who had influence over Jean didn’t have the same influence over teenagers. After all, the 1960s is noted for teenage rebelliousness. 3) These teens knew that their parents would disapprove of hot pants so they erred, ironically, on the conservative side by choosing hippie peasant blouses. (Is a ‘conservative hippie’ an oxymoron?) I am not sure it matters much as all the teenage girls were right in style in hot pants a year later anyway. I am glad Jean who was well into her 50s by this time never picked up the hot pants fashion. At least, I never witnessed it. I only wish that some other women of her age group were as sensible. … I am stopping this line of thinking now… in the interests of self-preservation. 4) Finally, we can conclude that the only safe way to ensure you are zipped up is to wear clothes that have no fly, giving whole new meaning to that traditional campfire song (possibly written by Pete Seeger,) “There ain’t no flies on us.” Nevertheless, it does beg the question of whether men can wear jeans that have no fly? I wonder what Jean would think?

‘Jeannie from the Block’

Let’s leave Jean’s jeans and get back to a more serious look at ‘Jeannie from the Block’ (apologies to J. Lo.) I know very little about the ownership and management of the Madill Block. It generated income I am certain but how much I cannot say and it is not a matter of great concern to me. I do believe however that there was a concerted family effort to provide Jean as much independence and the best quality of life possible, and the Block was central to that goal at least in the early days. I am pretty certain though that for a large portion of Jean’s adult life, the resources of the extended family were called upon to meet basic needs. Knowing the Madill family as well as I do assures me that Jean was in good hands.

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The Madill Block in 1982 looks much the same as it did in 1950.  Photo: S. Marshall 1982

If Jean lived in a larger urban setting, would she have fared better? Some will argue that she would have better access to programs that would meet her specific needs. Others will say that family and a close knit rural community was all that Jean needed. Of course, we will never know for certain. Was the reality of her life a success or a disaster? On balance, I would say that it was a success; it certainly wasn’t a disaster. There will never be unanimous agreement on the benefits and shortcomings of rural life but Jean spent most of her almost 101 years living among family and friends in the same small community into which she was born. There are many who will be envious of her achievement. As people approach end of life they often express a desire to return to their families and spend their final years “at home.” You know the saying “It takes a village to raise a child.” Perhaps the parallel credo in this instance is “It took a village to ensure quality of life for Jean.”

Jean’s relationship to others in the community, family or not, was a symbiotic one. In many ways, Jean was an unofficial ambassador for Altamont providing a warm and friendly greeting to all who came within its boundaries. No event held in the community was really ‘official’ until she graced it with her presence. In villages you get used to the fact that everyone knows everyone’s business. That is certainly the case in Altamont but it is not always a bad thing. It meant people were watching out for Jean, and conversely she was watching out for them. And if they weren’t watching out for each other, they were just watching each other. Jean would raise her voice if we children were stepping out of line or if other strange “doings” were in the works. She also tidied up around the village keeping common spaces free of garbage. I believe she was compensated in some manner but I don’t know how much or who paid. I do not believe that she was exploited in this arrangement.

It all seems a little idyllic and idealistic, doesn’t it? Is the secret to providing care for someone with a chronic illness or disability that simple? Family and community to the rescue! Well, not exactly, but before I digress into some political theory, it is time to stop for a moment to smell the roses.

A Rose for Jean

In my previous blog post I recommended a specific rose to represent each of the other three centenarians I have known. Keeping with that theme, Jean Madill deserves an appropriate  rose.  I thought long and hard about which rose I would chose, not just to celebrate her long life but to represent her story.  Inevitably, I gravitated toward the Hope for Humanity Rose developed at the Morden Research Station by Lynn Collicutt in 1984 in the Parkland series and introduced by Agriculture Canada in 1995 in honour of the 100th Anniversary of the founding of the Canadian Red Cross. This compact rose might be overlooked except for clusters of very dark red roses that bloom continuously in the growing season and through which she shouts, “Hey! I am here! I am beautiful!” It is a truism, I suppose, that everyone has detractors and some claim that Hope for Humanity requires extra care and pruning and is therefore “high maintenance.” Some say they hate the name … too cloying, an excess of liberal sentiment that almost makes them gag … but purchase the rose anyway for the beauty of the blooms.

In truth, neither the rose nor Jean Madill is “high maintenance.” All roses do require some regular care and pruning and Jean required familial oversight and a safe haven to thrive … and perhaps a little fashion advice and assistance with housekeeping along the way. Roses bloom with an ethereal beauty that is difficult to capture even with the latest technology. Similarly Jean Madill’s personality, nurtured by family and a caring community, carried a sparkle that shone through the gray of mental illness. 

Hope for Humanity: More than meets the eye

From the moment I first heard it, I was smitten by the phrase “Hope for Humanity.” Some would say my infatuation is just the “bleeding heart liberal” or the “social democrat” in me coming to the surface. Maybe that is the part of me that makes others gag?  Whatever, I do find the name “Hope for Humanity” thought provoking and uplifting.

We forever have Hope – a concept that I find somewhat mushy in the abstract but extremely sharp in its realism. For example, I hope for a cure for Parkinson’s disease. I carry that hope with me always even though it seems a bit vague, more like wishful thinking for something, anything, to happen. Hope is put into sharp focus though when the reality of what the fulfillment of wishes, prayers, and hopes actually means for persons living with Parkinson’s, their spouses, lovers, family, caregivers, and friends. It means a release from a complex of motor and non-motor symptoms that may range from annoying to unbearable, from predictable to unpredictable, from inconvenient to debilitating, from muscle movement irritants to excruciatingly painful cramping, from mildly intrusive anomalies to completely dominating regularities, from optimism to pessimism, and from joy to depression – all on any given day, at any given time, sometimes repeating with a relentless ebb and flow throughout every 24 hour period … forever. I witness that reality in myself and in my Parkie friends every day. When you understand the magnitude, the depth and breadth of this existence and the enormity of the joy that a cure would bring to our hearts, the relief it would bring to our minds, and the release it would bring to our muscles and brains, then Hope is no longer mushy; C’est clair!

Humanity” appears to be a straightforward concept meaning “mankind” or “humanness.” A literal interpretation of “Hope for Humanity” would be that we have “hope for mankind,” a lovely thought in its generality but it leaves too much unsaid for my liking. Ironically, I have to seek the abstract before I can understand the concreteness. Abstractly, humanity embodies qualities such as “benevolence,” “compassion,” “generosity,” “charity,” and “kindness.” You might argue that these are merely synonyms but I maintain that they form a package, reinforcing and strengthening each other to create an invincible mesh, a “social safety net,” the concrete manifestation of the altruism necessary for social and economic security.

“Social safety net”

Please excuse me as I continue my digression from roses per se to reflect on the fact that liberal democracies provide some form of “social safety net” for citizens. The term “social safety net” has many definitions ranging from minimal economic support or welfare (provided by governments, charities, informal social groups, and churches to citizens who have fallen on hard times) to the comprehensive supports provided by the modern “welfare state.” I truly dislike the term “welfare state” and I am in a mild state of shock that I have even raised it here.  I guess I would prefer ”social democratic state” in recognition that social responsibility is at its core.

In a social democratic state, the “social safety net” expands to include universal health care, unemployment insurance, public education and social services, state pension plans such as the Canada Pension Plan (CPP,) among other things. It springs from an ideology of an equal playing field to achieve success and redistribution of wealth occurs primarily through progressive taxation and access to services on the basis of need. My own personal beliefs fall very closely to these ideals. The state has a mandate to provide the structures of economic and social security for its citizens, intervening with various supports where necessary. No one should be left behind. (See Note 7)  It occurs to me that the values of a ”social democratic state” mirror the qualities in our earlier definition of “humanity” e.g., “benevolence,” “compassion,” “generosity,” “charity,” and “kindness.”

It should come as no surprise then that the “Hope for Humanity” rose has a complexity of her own being a hybrid of Prairie Princess, Morden Amorette, Morden Cardinette, R. rugosa and R. arkansana giving it a deep, almost blood red bloom to separate it from the landscape, a hardiness to cold weather, a resistance to disease, and all with a fragrance that does not overwhelm. For me, the heritage of the rose and the intricacies of “Hope” and “Humanity,” confirmed the Hope for Humanity rose as most appropriate to accompany Jean Madill.

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Two blooms on recently acquired Hope for Humanity Rose in our garden.  Photo: The PD Gardener 2016

Is family the answer?

I would not blame you for saying; “The PD Gardener has led us through a small, quite simple maze where the last turn opens into a clearing where all becomes …well … clear.” We could, quite correctly I believe, conclude that mental illness in Manitoba was not well understood at the turn of the 20th century and treatment was primitive within asylums and hospitals. This approach began to show its cracks and by mid-century treatment was shifting to community. Sadly, small communities such as Altamont (population ~200) within the Municipality of Lorne (population ~ 3,000) were unable to provide mental health and disability programs that would aid Jean’s treatment and care. Moreover, she did not have a disability that prevented her from participating in activities of daily living so there was an expectation that she could live with a certain independence outside of an institutional setting.

“Aha!” you say, “Then it is the family’s obligation and duty to care for the family member.”  You conclude that this is a story about how family provided for Jean and all was well. You are correct to a certain degree.  I believe Jean’s family did indeed ride to the rescue – out of love, duty, obligation, responsibility or whatever you might call it –  in the interest of choosing a reasonable option for Jean in a society with few options at the time. The family and many others from the community are to be commended for the role they played in Jean’s integration into community life. Altamont provided the environment Jean Madill needed and with family financial resources, the ‘safety net’ was in place.

Normally, I might be comfortable to let this observation be the end of our discussion but not today because a key question is prodding provocatively at my political core. Does it naturally follow that if we have a mental illness, disability or other chronic condition such as Parkinson’s or Alzheimer’s, then family is the preferred social unit for provision of care?

I fear that I have now opened up another can of worms and my moral and political compass must withstand intense interference as I pass through a very dangerous highly charged magnetic field.   My good friend Selma Garten states unequivocally  that the only real safety net for anyone requiring care is family.  Put bluntly, families are reservoirs of love and do not permit family members to be abandoned.  Selma speaks from much experience having cared for parents beginning at a very early age, and for her sister as they grow older. Her thoughts speak volumes to me in that one of the greatest fears I have as a PwP is the fear of abandonment as Parkinson’s advances and takes a greater and greater toll on my body and mind, as well as on the bodies and minds of those I love and who love me.  I don’t believe that this is an unreasonable fear on my part, not because I do not have faith that Anne and my family love me (I believe with all my heart that they do and I return that love unequivocally) but because the crushing weight of the care giving function in terms of time and resources may be just too much for any family to shoulder if a ‘social safety net’ is not in place to enable and assist the family to play its role over an extended period of time.

It is probably safe to say that the ideal scenario has us spending our last years with our families, secure in the knowledge that these years will be the ‘best’ years of our lives.  Equally, I believe  that it is safe to say, “That ain’t going to happen for many of us.”  I say this not because I am depressed ( I am not) or because I do not have confidence in my loved ones, but because the cards are stacked against us as we try to reach the ideal. For families to be the ideal, our society (social, political and economic life) must provide families with the capacity to meet the demand and their mandate. To date, social democratic states have not been able to meet the test of the ideal although they are working to fund and deliver “humanity” in long term care and end of life care.  Institutional care is most often described as cold and impersonal whether provided by the state, charitable organizations, or for profit entities. In 1977 Daniel Jay Baum characterized the nursing home industry as Warehouses for Death to warn us against the institutionalization of care for the elderly. The warning continued the move started in the 1950s and 1960s toward community care – not to be confused with family care. Nevertheless, recently I heard an interview on CBC Radio with Kay Parley, a psychiatric nurse who was also a patient of that era and she claims that the move to community care was not always the best move for patients – that they would have received better treatment in institutionalized settings such as mental hospitals where patients were “pushed to do things” instead of getting treatment under the “medical model” where the focus was on curing and looking after the patient.

Now 40 years later, the warning  about nursing home care is as salient as ever and few would agree that institutional care is to be preferred over care provided by families.  In fact, it is difficult to argue against family values when they are posed as compassionate and progressive ideals in contrast to institutions. But I am about to do just that. You see, the problem is that families most often can’t meet the test either.

If we assume that family is best suited to provide care for those who are mentally ill, it should also be best suited for other critical societal responsibilities. “Home schooling” would be the norm instead of public and/or private systems of daycare, kindergarten and grade school. At the opposite end of the age spectrum, elder care would be a family responsibility and government run care and private, for profit care would be least desirable. However, I have a gut feeling that some people are less likely to situate elder care in the family than they are to situate early childhood education there. Elder care has a different labour intensity and is, considering the cost of medical devices and pharmaceuticals etc., more expensive than childcare and early grade school.  The shorter duration of elder care may offset some of the cost. To be very crass about it, youth represent ‘future value’ and while the chronically ill elderly are ‘treasured’ for past contributions, the cost of care discounts their current value.

I want to be clear that I am not ruling out family as a legitimate option in individual cases. However, I am ruling out family as the primary and most effective provider for a complex set of societal needs e.g., health care, care for the mentally ill and disabled, all levels of education, unemployment assistance, pensions and retirement income, and many other responsibilities.

Even if family values and the family unit were extremely strong in our culture (and I am not sure it is that strong) the tensile strength (See Note 8) of the family cannot be infinite. There is a point at which the ability of the family to withstand stress fails. Oh sure, the strength of each family is different resulting in uncertainty and unpredictability when one or more of its members require care outside of the norm. How a society identifies and deals with situations requiring care are important questions.  Can family be the backbone for all health, and social and economic welfare or, asked slightly differently, can family be the ‘social safety net’ from first report to last resort?

Please bear with me. You see, I can’t get it out of my head that the different types of care required for the wide array of health and mental illnesses alone places huge stress on families. Over the century of Jean Madill’s life, the identification, classification, psychological and psychiatric therapies, drug therapy treatments, and social and education programs changed significantly. These changes were both qualitative and quantitative, and included new and better therapies as well as different locations for the responsibility, administration and delivery of programs. These changes require financial resources and human labour to navigate and implement successfully – resources most families do not possess. In truth, the modern family unit is not designed to accept these obligations on an individual basis never mind on a societal basis

Two critical stressors

Families are never exempt from the stresses of having to care for someone with a chronic condition.  Financial burden is one such stressor and is most acute when the family is not able cover costs of care. This burden is somewhat less if you live in a functioning “social democratic state.” The more complex the care and treatment, the more costly it is. The longer the duration of care, the greater the financial burden. The good news is that if you are very wealthy, maybe you can manage. However, it is likely the threat of bankruptcy or significant loss of wealth is omnipresent. Bankruptcy resulting from the cost of health care is common in the United States even if the family has some type of health insurance. It is not so common in Canada, which has more public and subsidized health care.

Caregiver burden is a second stressor and accrues to family member(s) over time. The longer the family member requires assistance and the more complex the care is, the greater the caregiver burden. However, the good news is that the more responsibility for care is spread across the extended family, the more caregiver burden can be ameliorated for any individual family member.

Today, families are faced with a rapidly increasing incidence of neurological conditions e.g., Alzheimer’s which is a common form of degenerative dementia and Parkinson’s disease where an estimated 50 – 80 percent of Persons with Parkinson’s (PwP) will develop Parkinson’s dementia within ten years of diagnosis. PwP will require increasing levels of care even if there is no dementia present as its advanced symptoms and the side effects of the drugs are extremely debilitating.

Usually a person newly diagnosed with Parkinson’s will have a high degree of physical and mental functionality permitting independence on matters of daily living including continuing to work in many cases. This independence diminishes as the disease advances but the life expectancy of PwP, while shorter than those without Parkinson’s, is still a good long time depending on the efficacy of the pharmaceutical treatments and physiotherapy/exercise programs followed.

While the family will remain at the core of activities of daily living and non-medical care for a lengthy period of time, there will be an increasing reliance on professional support including neurologists, family doctors, nurses, pharmacists, psychologists, psychiatrists, physiotherapists, speech pathologists, social workers, Parkinson’s organizations, exercise coaches, gym instructors, support group volunteers, and a whole raft of others. Many PwP will develop dementia and be forced onto a path of complete dependency. The cost of care and therapies increases almost exponentially as the disease progresses. If there is no extended health insurance coverage, the cost can be crippling for the family.

As Parkinson’s is a progressively degenerative disease, caregiver burden also increases as the disease progresses although not necessarily in a linear relationship with time. It may progress quickly, slowly, or not at all during some intervals, but know this; while it may take a hiatus from time to time, it will inevitably advance.

Along with that inevitability, PwP will eventually require more care than most families are capable of delivering at a cost that is much greater than most families can afford.

Very few families possess the tensile strength to fulfill the needs of family members who have significant health needs. In other words, in general the family is not well suited to be the ‘safety net of last resort.’

Long-term care is a vital component of the Ontario health care system. While most seniors can expect to reside in the community throughout their later years, a significant number will require institutional care to ensure safety and well-being. The need for long-term care services and supports is often greatest for those who are considered the most vulnerable – those who are frail, or have complex health conditions, or psychiatric disorders. (See Note 9)

What is my advice? If you believe that family is your safety net, then accumulate wealth and establish financial stability as quickly as possible and never relinquish it. At the same time get busy with making a large, cohesive, extended family, one that doesn’t suck up all your wealth. I say this tongue in cheek as liberal democracies are trending toward greater inequality between the top earners in the population and everyone else. According to Canadian Centre for Policy Alternatives researchers

The richest 1% of earners in Canada accounted for 32% of all income gains between 1997 and 2007. That is four times their share of total income gains during the 1960s (another period of rapid growth) and almost double the share of gains of the 1% during the Roaring Twenties. (See Note 10)

I wish you good luck in making the top 1 percent of earners as not everyone can or will. At the same time the nuclear family is getting smaller not larger.

The average number of children per family decreased from 2.7 in 1961 to 1.9 in 2011. During the same period, the average number of people per family declined from 3.9 in 1961 to 2.9 in 2011. (See Note 11)

I think it is clear that it is not possible for financial and caregiver stressors to be alleviated solely through generation of wealth and increasing family size.  Policies designed to redistribute wealth are essential but run counter to policies of wealth accumulation. Decreasing family size means that care is less likely to be spread across the family. Add to that an unwillingness to sacrifice earning potential i.e., to leave the labour force to provide care, means that caregiver burden will continue.

Finding The Foyer

But have I convinced you that institutions are the best alternative?  Not likely.  As I said earlier, ideally we all would like to be with loved ones until the very end … or put another way, do not want to be abandoned.)  In the end though, our receptivity to, and acceptance of institutional care probably is conditional upon specific circumstances and we must prepare ourselves to make this decision.

I believe that Jean Madill’s family came as close to meeting the tensile strength test as any family has … but Jean lived to be over 100 years old, a wonderful achievement! She outlived most of her immediate family and contemporaries placing considerable responsibility and stress on extended family.  Altamont served as the secondary safety net for most of Jean’s life and certainly played a key role in ensuring that she was able to live out her life in dignity in a personal care home in the neighbouring community of Notre Dame de Lourdes.

The Foyer Notre Dame is an accredited 60-bed personal care home that provides continuous quality client care and service in both official languages. It’s (sic) health care team is composed of physicians, nurses, a social worker, a registered psychiatric nurse, an occupational therapist, a recreation worker, a dietitian and a large support staff. Other services such as foot care, hairdressing, companion and clothing sales are available. Residents may access the spiritual care and guidance of their choice. In addition to these various services, the Foyer also operates an Alzheimer Unit. (See Note 12)

It is tempting to wax poetic and become soft and fuzzy about family values but I caution against romanticizing the role of the family.  Some think the family is, or ought to be, the safety net of last resort but the reality is that it is unlikely to be. Jean’s century long journey to The Foyer highlights the necessity for governmental programming for those who require it. When caregiver burden and financial burden are just too great for families to handle independently, it is time to find the Foyer (not just metaphorically speaking.)

We all need a Foyer in our plans. I trust that if I am compos mentis, I will know when the time is right, for me and for my family, to take appropriate action. If I am not, then I trust my family to help me find The Foyer.

Still you are correct if you think there is a ‘feel good, soft, sweet centre’ to Jean’s story but it is not found in a proof that family is the best avenue for success.  To the contrary, Jean’s case is one of the exceptions and attempts to duplicate her experience, as an example of effective social policy for mental illness, are likely to fail. Membership in family and community is contingent upon relationships and characteristics that are rarely transferable and are almost never duplicated. In other words, we can marvel that it works in one instance but we can know that it will occur only rarely, if ever, in another. It is rather like counting on successive individual mutations every single year to improve your crop yield.

Finally …

Whew! That last section was rather serious, wasn’t it?

Initially, the objective of this post was to include Jean Madill as another remarkable woman from Altamont who lived to celebrate her 100th birthday. I am fortunate to have known her and to know something of her life and circumstance.

I also wanted to address some of the realities of life for those with mental illness and disability, partly through the eyes of someone (me) with minimal awareness and understanding of mental illness never mind the care, treatment and responsibilities for costs. I have exposed my gross ignorance more than once in the previous pages.

As I reflect on my encounters with Jessica and the King of Prince Edward Island, it is clear to me that the stigma of mental illness is incredibly hard to shed because we do not speak of the mental illness or the stigma directly.  Rather,  we camouflage both in euphemisms and stereotypes that mislead us.

I am not defending my own actions or denying culpability on my part in these exchanges but they were enough to make even me (a person who desperately wanted to fit in) feel ill at ease. Any encounters with patients who were allowed to be on the mental hospital grounds were awkward to say the least, partly because we had only the perception of the mentally ill as being “crazy” to inform our expectations and behaviours.  Needless to say, the “crazy” stereotype was (and is) a very poor basis for developing awareness about mental illness … because labelling them “crazy” allowed us to take away their dignity. It is with some degree of consternation that I realize that even the way I have recounted these two stories contributes to the stigma.

I have also used some humorous stories involving Jean Madill in this account. Some may argue that these accounts contribute to the ongoing stigma of mental illness and trivialize both the condition and the lessons to be learned.  My view is that these stories are evidence of ‘humanity’ – perhaps the most valuable contribution that Jean herself brings to this discussion – illustrating that those with mental illness and chronic health conditions have a right to both dignity and quality of life. I have done my best to blend humour with eccentricity in a manner that respects those rights.

One last, less serious, question

Finally, I have one last niggling question: If I live longer, will I know more people who reach 100 years of age i.e., will I know more than the four I have already identified? Hmmm… maybe the probabilities do increase [How is that for using a probability of probabilities hedge?] but I think the more intriguing question is, “Will other people live long enough?” For those who are older than I am right now, I wish you good health so we can party at your 100th birthday and you can party at mine in time! For those who are younger than I am now, I wish you good health so that we can party at my 100th birthday before we both celebrate yours! Of course, I gratefully accept wishes for good health from everyone so that I may fulfil my end of the bargain.

 

Santé! Happy 100th Birthday everyone!

Emojie birthday image

NOTES

  1.  Playground Jungle http://playgroundjungle.com/2011/09/gene-gene-made-a-machine.html
  2. The term ”mental breakdown” seems to be synonymous with “nervous breakdown.”
  3.  Mayo Clinic http://www.mayoclinic.org/diseases-conditions/depression/expert-answers/nervous-breakdown/faq-20057830
  4. Mayo Clinic http://www.mayoclinic.org/diseases-conditions/mental-illness/basics/definition/con-20033813
  5.  Boston College Center for Psychiatric Rehabilitation https://cpr.bu.edu/resources/reasonable-accommodations/what-is-psychiatric-disability-and-mental-illness
  6. Selkirk Mental Health Centre History, From “Manitoba Insane Asylum” to “Selkirk Mental Health Centre” http://smhc-archives.com/History%20of%20SMHC.pdf http://smhc-archives.com/History%20of%20SMHC.pdf August 2009.
  7. Some political parties and movements oppose the welfare state and derisively refer to governments that provide extensive state sponsored programs and services as the “nanny state.” These groups want to minimize the role of government in the everyday lives of citizens, leaving those who are on the margins to fend for themselves, and if they fail, so be it.
  8. Defined by Collins English Dictionary as “a measure of the ability of a material to withstand a longitudinal stress, expressed as the greatest stress that the material can stand without breaking.”
  9. Canadian Mental Health Association Ontario
  10. Klein and Yalnizyan 2016
  11. Statistics Canada
  12. Southern Health Regional Health Authority

 

SOURCES

Alzheimer’s Association http://www.alz.org/alzheimers_disease_1973.asp

American Senior Communities, Mental Illness vs Dementia in the Elderly, http://www.ascseniorcare.com/mental-illness-vs-dementia-elderly/

Daniel Jay Baum, Warehouses for Death, Burns and MacEachern Ltd. 1977.

The Beatles, When I’m 64

Bell Let’s Talk Day 2016, http://letstalk.bell.ca/en/

Canadian Mental Health Association, Ontario http://ontario.cmha.ca/network/minding-our-elders-mental-health-in-long-term-care/

CBC Radio, Interview of 93-year-old former psychiatric patient and nurse on lessons from LSD, Tuesday June 14, 2016

The Clinique: a monthly abstract of the clinics and of the proceedings of the Clinical Society of the Hahnemann Hospital of Chicago, 1923.

Canadian Rose Society  http://canadianrosesociety.org/CRSMembers/Resources/RosePhotos/ParklandRoses/tabid/71/Default.aspx

Collins English Dictionary

Dutch Growers Saskatoon http://plants.dutchgrowers.ca/11040002/Plant/1333/Hope_for_Humanity_Rose

Diane Franklin, Dementia and Mental Illness: Is Dementia a Psychiatric Disorder? Our Parents, March 26, 2015 https://www.ourparents.com/care-topics/2015/03/26/dementia-and-mental-illness-is-dementia-a-psychiatric-disorder/

Klein, Seth and Armine Yalnizyan, Better is Always Possible: A Federal Plan to Tackle

Poverty and Inequality, CCPA Alternative Federal Budget Technical Paper, February 2016. https://www.policyalternatives.ca/publications/reports/better-always-possible

Parliament of Canada, Interim Report of The Standing Senate Committee On Social Affairs, Science And Technology Report 1. The Honourable Michael J.L.Kirby, Chair. The Honourable Wilbert Joseph Keon, Deputy Chair. November 2004

Parliament of Canada Mental Health, Mental Illness and Addiction: Overview of Policies and Programs in Canada Report 1 http://www.parl.gc.ca/content/sen/committee/381/soci/rep/report1/repintnov04vol1part3-e.htm

Playground Jungle http://playgroundjungle.com/2011/09/gene-gene-made-a-machine.html

Selkirk Mental Health Centre History, From “Manitoba Insane Asylum” to “Selkirk Mental Health Centre” http://smhc-archives.com/History%20of%20SMHC.pdf http://smhc-archives.com/History%20of%20SMHC.pdf August 2009.

Southern Health Regional Health Authority, Manitoba http://www.southernhealth.ca/healthsite.php?id=147

Southern Health Regional Health Authority, Manitoba, Annual Report, 2014. http://www.southernhealth.ca/data/publications/35/2014-15%20Annual%20Report.pdf

Statistics Canada, Fifty years of families in Canada: 1961 to 2011

Nicole Zahradnik, Minding Our Elders: Mental Health in Long-Term Care
Network, Winter 2007, Ontario, Canadian Mental Health Association, http://ontario.cmha.ca/network/minding-our-elders-mental-health-in-long-term-care/

© Stan Marshall (The PD Gardener) 2016.