The Lasting Legacy

Full body braces 1955
The Hare 1955

I often joke that I grew up with about 30 mother figures and one father.  The hospital’s of my childhood was the employment domain of the female worker which contributed to so many mother-figures.  With the exception of your doctor, who you may have seen an hour or two a week (unless he was hanging over you with his surgical mask on) or a janitor somewhere, everyone in positions of influence were women.

Physio’s, nurse’s, teachers and any other staff that had direct care duty with us would often entertain us with a story like “The Little Engine That Could” while we were undergoing treatment.  I was nine years old and my physio had made my mantra “I know I can”.  We were surrounded by nurses, saw our physio two or three times a day and teacher four to six hours a day.  Even with surgeries you couldn’t escape those teachers.

Polio unit
The numbers were so high they required dormitories.

It was not uncommon to have a nurse on one side of my bed giving me a shot of demerol and my math teacher on the other giving me my home work for the day.  We may have laid around but we didn’t just LAY around.  We were expected too produce and that was the strategy to build survivors.  The numbers were just too high to ignore so there was a lot of effort put into making us adaptable and independent.  It might have been a hospital but, in those days, it was also our home.  We were expected to be part of the “treatment” team.

Like any home we all had our weekend chores.  I spend more weekends, outside of recreation time, scrubbing black wheelchair tire marks off the hallway floors after racing up and down all day.  Or you spend a couple of hours sterilizing bedpans and urinals with a nurse and there was always a story.  After all a 25 year old nurse couldn’t sit there and discuss their wild weekend (if) with an 11 year old and small talk can be difficult with a questioning 11 year old.  Instead  they would tell you a story.  The stories weren’t just distractions but themes meant to instill confidence and survival. Continue reading “The Lasting Legacy”

Now You Tell Me…

“There are things known and there are things unknown, and in between are the doors of perception” – Aldous Huxley

There are times you can only scratch your head and wonder if this is really life or am I just having a bad dream.  Reality and perception are like that.  The past three days have been a lesson in why I am becoming increasingly hermit in nature, it’s not just physical ability.  I’ve just spend three days finding reminders.

We had some great weather moments over the weekend which really encouraged me to get out and enjoy.  I had a few things that really needed doing so it was an all out type of weekend.  Things like re-stocking the pantry (personal space is always interesting in public gathering places), I had signed up to attend a public political event and I wanted to make sure I exercised my vote at an advanced poll.  So physically I was busy (kept count and did the chair transfer into or out of my car 48 times) so today I am big pharma’s happiest customer.  Today has been a four pill day…

My adventure at the advanced poll was another head scratcher and left me wondering just how little common sense there is out there.  My advanced poll was at a local elementary school.  It was a Sunday so when I arrived at the polling station there were lots of available parking but no identifiable disabled parking.  Since the poll seemed pretty steady (about 30 cars in the lot) I took an end spot just to make sure I wouldn’t be blocked in when I got back.  I do that to avoid the possibility of coming back to my car to find someone parked so close I can’t open my door wide enough to reload my chair.

walkingagainWhile I’m unloading my wheelchair in my usual fashion I noticed a women wearing an Elections BC lanyard around her neck.  She was watching me closely and I checked that off to someone watching to make sure I didn’t miss my chair as I jumped from my drivers seat.

As I wheeled towards the door to go into the poll she approached me to tell me about the “curb side” vote.  I had never heard of this but according to her one of the services now is to bring anyone with mobility issues all of the paperwork to their vehicle and cast your vote that way.  I’ve been voting for a lot of years and that is actually a good idea but it would be nice to make people aware of this.  I consider myself relatively well informed so I was surprised by this fortuitous piece of information.  At the same time, now you tell me.  You watched me unloading my chair so wouldn’t 20 seconds of common sense indicate you should say “I should make him aware”.  Oh well the fight goes on… Continue reading “Now You Tell Me…”

My New Reality…

“The ultimate test of man’s conscience may be his willingness to sacrifice something today for future generations whose words of thanks will not be heard.” – Gaylord Nelson

Not sure what woke me up this morning, the construction, the heavy pounding of the rain (will this winter ever come to an end) or the sharp pulse moving up and down my arms like a 12 string classical guitar with all 12 strings out of tune.  Today is definitely a three pill day, narcotics be damned.  Growing up in a hospital you adopt the philosophy of better living through chemistry early.  On the upside I’m waking up.

Got a lucky break late morning with a few hours of sunshine so used the time wisely and hit the Save-On.  So I am well stocked in anticipation of the next four days of rain.  I have started paying more attention to the weather reports and less attention to the news (with the exception of the BC election) these days.  I know during the rainy time my body behaves like a badly tuned and out of sync garage band.  But again at least I woke up which is more than two good friends did in the last week.  Rest in peace Liz and Lance, your time is done and your suffering has past.  My condolences to their loved ones.

I have been putting a lot of thought into the CBC story I had shared recently.  I put so much thought into it I contacted the author, CBC’s Donna Carreiro.  More on that contact to come…meanwhile her article actually woke me up.  I started thinking of my own situation and did a bit of my own research.  My descent into wheelchair dependence was gradual with the biggest part happening after moving to BC.  A whole new set of medical professionals to get to know and me working from the assumption that the fallout of polio was understood.  For the record, I do not have polio.  Polio is a virus that runs its course, does its damage and then it’s gone.  The damage done is the outcome of polio, the residual is not polio.

No medical professional ever mentioned post-polio to me.  I was aware of it but with limited knowledge.  The closes medical rational I ever received for increasing wheelchair dependence plus symptoms like quicker to fatigue was the “strains of a life time of walking on crutches”.

gainpainThe idea that my medical team (I call it a team but it’s really a pathway of referrals so that health “administration” can call itself a system) wouldn’t understand polio never entered my mind.  When you’ve lived your entire life with polio you think everyone knows, you know the saying “can’t see the forest for the trees”.  This is the problem with assumption rather than critical thinking.

When I think about it I knew few people of my generation in 1967 who were aware of the devastation caused by Spanish Flu.  Fifty years later why should I expect those generations behind me be anymore aware of a disease we basically eradicated in Canada fifty years ago.  Some realizations can be painful but needed to avoid future pain.  I have now come to grips with the idea that post-polio has played a role in my advancing decrepitude.  After over forty years of fighting for inclusion and acceptance the posts have been moved and I have to adjust.  Welcome to the my world of accommodation…unfortunately I have watched while the BC Liberals have slowly eroded a good chunk of the advances made. Continue reading “My New Reality…”

Taking Responsibility

“The life history of the individual is first and foremost an accommodation to the patterns and standards traditionally handed down in his community” – Ruth Benedict

It has been raining off and on for most of the day.  I knew it was coming so took advantage of the sun yesterday and went out to restock.  Pantry is now ready for at least a four day siege.  Glad I did, good exercise and I quite enjoyed the sunshine.  Now, gazing out my window, there’s a mist in the air creating a grey tone appearance to my surroundings.  It makes me wonder if this is how someone with cataracts views a changing world.  At the same time I feel like I’m experiencing a “mental cataract” when it comes to putting thoughts to paper.

As I said it is a dismal day outside so I am trying to avoid thinking dismal things, however that is a blockage for someone who likes to be expressive with words.  So I am gazing out the window, partly because of the new two story multi-unit development going on across the street (starting at 7am) and partly to see if I could land on a topic that piqued my creative juices.  Sitting here wanting to write but lacking an emotive topic and the phone rings.  Now this is cool because I didn’t know it could be done but my computer rings the minute my phone rang with a little phone icon in the upper right hand corner, so I answered with the computer.

It’s a buddy of mine from Alberta (we were neighbours 30 years ago and been tight ever since).  He was on his way to Camrose and had been listening to CBC Manitoba in his truck.  I know nothing says wake up like listening to CBC talk radio right.

March of Dimes Poster Child
From a Winnipeg newspaper, 5 years old and March of Dimes Timmy

We do share some of the same values and interest so he suggested I check out a CBC Manitoba report on the issues being faced by the polio/post-polio community.  I have a history with Manitoba and he is aware of that.  The subject is one I am personally very passionate about and have written often about.  The story hit very close to home based on current experience with a community health system (all well meaning) that is so out of touch with the reality of what’s happening in the community.  BC already has a seniors care crisis lets not complicate things by forgetting our history.  There are 15 to 20 thousand polio survivors hitting retirement and entering a system that can hardly manage the current crisis.  This should actually be an election issue here in BC!

Boy the rain is coming down but so is my mood.  As some of you are aware I am currently “playing the game” so I have a “care worker” come by every morning, usually around 10 to meet the stated needs the current health policy dictates.  Usually by the time they get here I’ll be working away on my computer.  I always leave a few dishes in the sink so they have something to do but inevitably the conversation comes around to my wheelchair.  That way we have both met the needs of community health. Continue reading “Taking Responsibility”

Starting the Story Anew…

“Until you make the subconscious conscious, it will direct your life and you will call it fate.” – Carl G. Jung

The snow has just started so the earlier week stocking up proved valuable.  However on the positive side, snow on Vancouver Island generally means it will warm up and I have had my fill of the cold weather.  My obsession with having the news on in the background paid off so I made sure to stock up after seeing the 7 day forecast.  I don’t go out when it snows so this type of weather provides me with the time to reflect on my own thoughts.  So the more it snows the more time I have to return to the substance of the opening Carl Jung quote.

I entered this new year with two main goals.  One, find some form of assisted living arrangement and two, do something about my low grade depression that doesn’t involve more prescriptions.  I figured I’ve been dragging this depression around for almost 30 years so why start more pills.  Both of these goals are important and both will need careful planning but moving is external so I will focus on a place to live first.

Dealing with depression is internal so I can do some self assessments while I’m organizing a move.  I worked in psychiatry for twenty years so I think I know how to work through that.  Unfortunately I was in a situation for many, many years where “psycho-babble” was frowned upon and any discussion regarding feelings was considered bunk so when I left the profession I left emotional expression.

For me independence is almost a religious experience and to surrender any of it is like a Catholic giving up confession but I recognize the necessity.  Acceptance of moving into an assisted living environment was a big step for me.  That acceptance has economic, physical and emotional impacts so I need to set the ground work myself.  One of the contributing factors to this decision was my recent hospitalization.  If living in an apartment community where there are supports will keep me out of hospital, all the better.  So imagine my disappointment when the feds/provinces failed to reach a new health agreement last month.

Provincial governments across the country lost out on an additional $11.5 billion meant to target mental health and homecare (much neglected areas) but the provinces didn’t like having terms dictated.  I don’t know about you but I was raised in a world where if your bargaining with someone then everybody has input until a compromise is reached.  Instead we seem to be drifting further apart.  Whatever happened to the centrist nature of Canada? Continue reading “Starting the Story Anew…”

The Santa Shadow

“The bond that links your true family is not one of blood, but of respect and joy in each other’s life” – Richard Bach

CONFESSIONS –   In preparation for the suggested snow that may be coming I did a quick roll over to the mall to grab the last “essentials” I may need for the next couple of days.  It was a sunny day here but cold as a witches…well you know the saying and a strong wind was blowing.

Got to the mall and it was chaos.  There was what looked like a line up for the munchkin characters auditioning for a remake of The Wizard of Oz.  This was the first crowd I had encountered that I could actually see over.  It is that time of year when I am eye level with more people and they don’t all have pointy ears.  As I got closer I realized it was the line-up for the photo with Santa.  I haven’t given it much though recently because everything I need to do is done.  All that is left is to get the gifts over to my son and grandson.

Christmas for me has become very simple.  I kind of prefer it that way.  Takes me back to part of my youth.  When you’re spend more Christmas’s in the Children’s hospital than in your families home then you may have a different perspective of Christmas.  A lot of kids would get “hospital leave” over Christmas and go home.  However those who weren’t well enough or mobile enough stayed in hospital and the staff made it very festive.

I was from a working class family, the “middle class” was in development.  I had five siblings at home so a good Christmas would produce three or four gifts plus a stuff stocking (which were usually one of our own socks back then).  Stocking’s tended to be filled with nuts (screw the allergies, nobody talked about those), maybe a Christmas orange, maybe something chocolate and little things like collectable cards, some marbles or some small toy (like Jacks, don’t even know if that game is played anymore) but you get the idea.

polio splints
You weren’t going home for Christmas in these things

Plus a Christmas at home came with it’s own inherent dangers.  At the time I walked with braces on both legs and they weight about forty pounds.  They didn’t have the materials then we see in today’s healthcare.  This was a time when you would lie down on a large sheet of industrial paper, the “crutch guy” would draw an outline of where the braces were going to go and then into the maintenance shop to be made.  Steel and leather, they were heavy.  So it wasn’t uncommon for me to take them off at home and scoot around the floor on my butt.  Scooting around on the floor at Christmas with at least five adults and ten kids held a high risk of being stepped on.  I have a personal appreciation for how Ivar would feel at a Vikings gathering.

The energy and excitement of the day would eventually work into a rambunctiousness the adults would no longer stand for so off they would send us to the community centre across the gully.  There were two outdoor skating rinks so the older kids would skate or play a bit of stick hockey.  The younger (and usually smaller) ones would use the toboggan hill.  Needless to say I wasn’t a skater so… Continue reading “The Santa Shadow”

The White Noise of Activism

“Our lives begin to end the day we become silent about things that matter” – Martin Luther King Jr

That quote has been a mantra of mine for over forty years.  It was eight years after his death before I discovered it.  The essence of that sentence became a way of life for me much to the chagrin of those closest to me.  I am not known for my quiet servitude.  I pride myself on my ability to assess a situation through a number of lenses and then take action.  If it is something I consider an injustice I am never “silent”.  Activism is in my DNA.

Speak Out
If those closest to us don’t get why will anybody else?

I was 14 years old when my activism career began. It was a combination of internal development ignited by external events.  Fourteen is a difficult time in the developmental process of a teenager.  With puberty happening and the Limbic System kicking in it is a precarious time for the development of a psychosocial persona.  This isn’t restricted to kids in a hospital but something every teenager faces.  In the community an angry teen can act out in many ways but you have limited options in a controlled environment like a hospital.  You have to become creative.  I chose activism without even knowing it.

I wouldn’t have called it activism at that point but I was definitely speaking out.  I was an angry kid in an environment that allowed me little control over my own life.  So I found reason to speak out against change.  The first was a simple policy change but proved to have far reaching effects on so many levels.  For years the Children’s Hospital had had little dining rooms on each unit where we went for our meals.  This was all part of the process to normalized life for the polio kids by establishing that family meal scenario.  But by the early 60’s polio patients were beginning to age out of the hospital and a different demographic of patient was starting to arrive.

With that changing demographic, the delivery of healthcare was also evolving.  One change resulted in the loss of the dining room.  This split up my team of peers while steam carts if food began arriving on each unit. For a young impressionable mind like mine I saw this as an adverse effect on the camaraderie of my social circle and an awakening to how little control I had over my life choices. Continue reading “The White Noise of Activism”