LEARNING TO WALK AGAIN … OR … READING BETWEEN THE LINES

Learning To Walk Again … Or … Reading Between The Lines

Author’s foreword

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

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

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

PERSON WITH PARKINSON’S RENDERED IMMOBILE

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

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

Looking for answers (in all the wrong places?) 

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

and

Knee bone connected to the thigh bone

Thigh bone connected to the hip bone

Hip bone connected to the back bone (Endnote 2)

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

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

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

Symptoms defy explanation say medical specialists

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

The new normal 

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

IMG_2389

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

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

IMG_3159 (1)

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

End Notes

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

© Stan Marshall (The PD Gardener) 2016

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

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

hat Thepdgardener IMG_0608

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

Niggles

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

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

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

Mary Isabel Armitage

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

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

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

Mary Armitage

Mary Armitage  Photo: Unknown

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

Gender stuff

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

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

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

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

My engraving career

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

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

The Plasticine Age

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

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

Plasticine

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

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

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

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

Knock a Door Ginger

Sylvan School IMG_5753

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

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

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

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

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

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

MARY ANNE SCOLES (née  STRAUBE)

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

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

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

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

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

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

Mary Anne Scoles passages WPG FP

Mary Anne Scoles  Photo: Winnipeg Free Press Passages

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

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

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

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

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

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

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

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

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

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

Jemima and Robert Wilson IMG_5738

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

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

Homesteading

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

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

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

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

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

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

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

Final niggles about three women

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

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

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

The third and biggest niggle

Map Altamont red dots 2 IMG_0184

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

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

Three roses for three prairie women

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

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

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

1) Adelaide Hoodless

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

hoodless1

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

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

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

Centennial IMG_0426

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

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

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

Wild rose cwf -300px

Wild Rose  Photo: Canadian Wildlife Federation

 Life Expectancy: The dash of cold, hard reality

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

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

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

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

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

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

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

Life expectancy with Parkinson’s disease

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

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

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

cards stacked against IMG_5773

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

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

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

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

Similarly,

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

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

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

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

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

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

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

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

And, finally: No, I am not depressed.

APPENDIX I

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

1862 Jemima Holliston is born

1867 Jemima Holliston is 5

  • Canadian Confederation

1871 Jemima Holliston is 9

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

1872 Jemima Holliston is 10

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

1884 Jemima Holliston is 22

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

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

1890 – 1920 Jemima Wilson is 28 – 58

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

1890 Jemima Wilson is 28

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

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

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

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

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

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

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

1902 Mary Armitage is born

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

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

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

  • World War I

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

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

~ 1918 Mary Anne Straube marries Mike Scoles

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

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

1924 Mary Armitage age 22 begins teaching in Altamont, Manitoba

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

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

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

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

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

  • World War II

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

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

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

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

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

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

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

 

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

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

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

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

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

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

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

 

 

 

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

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

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

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

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

  • The Federal Employment Equity Act is passed.

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

  • Canadian Roberta Bondar flew in the Space Shuttle Discovery

1993

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

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

  • Beverley McLachlin appointed Chief Justice of the Supreme Court

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

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

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

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

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

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

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

2016 April 2016

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

NOTES

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

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

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

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

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

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

SOURCES:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

© Stan Marshall (The PD Gardener) 2016

 

 

 

 

 

Death, Souls, Parkinson’s and other Strangeness

Death, Souls, Parkinson’s and other Strangeness

Preface

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

Can Parkies talk about death? 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Firefly: Huh, no wonder he passed away.

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

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

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

Cottage Reading 2015 Photo: S. Marshall

Cottage Reading 2015 Photo: S. Marshall

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

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

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

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

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

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

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

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

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

All things bright and beautiful,

All creatures’ great and small.

All things wise and wonderful,

The Lord God made them all.

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

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

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

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

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

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

The Old Fisherman

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

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

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

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

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

The Hitchhiker

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Where is that Bert Guy Anyway?

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

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

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

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

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

The Sentencing

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Murder in the Garden

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

Mandevilla in early October Photo: S.Marshall 2015

Mandevilla in early October Photo: S.Marshall 2015

Mandevilla sacrifice early October 2015 Photo: S.Marshall

Mandevilla sacrifice late October 2015    Photo: S.Marshall

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Parky and books IMG_4764

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

It’s all about the ‘plasticity’, baby

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

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

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

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

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

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

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

If I were a betting man ….

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

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

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

Caveat

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

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

Post Script Script

This could be a Marx Brothers script:

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

Zeppo: (Toots his horn)

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

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

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

Zeppo: (Toots his horn.)

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

(Groucho works his eyebrows vigorously)

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

(Fade to black)