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.”

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.

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.

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.

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.]

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.

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.

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.”

“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.

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.

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.

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.

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.

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.

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 …]

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 32^nd 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.

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.

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.

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:”

“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.

Morden Fireglow  Photo: S. Marshall

Prairie Joy  Photo: S. Marshall

Morden Blush  Photo: S. Marshall

Morden Belle  Photo: S. Marshall

Morden Centennial  Photo:   S. Marshall

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

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

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.

 

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.

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 20^th 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.

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!

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.

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 20^th 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.

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.

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.

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

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.

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.”

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.

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 100^th 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.

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 20^th 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 100^th 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 100^th 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 100^th 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 100^th Birthday everyone!

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.