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”

What We Don’t Know We Know…(revised)

“Progress is impossible without change, and those who cannot change their mind cannot change anything.” – George Bernard Shaw

It’s another grey windy day but at least it’s not raining.  Out of boredom and, to maybe kick start an idea into my cranial star chamber, I started searching out YouTube for old TV theme songs.  I came across the 1955 version of Davy Crockett.   I remember wanting a raccoon cap as a kid but the real Davy Crockett was a “mountain man” turned politician.  He became a peoples politician  who took a stand along with some other great patriots right up to their deaths at the Alamo.  What has happened to that political commitment.  Anyway that was a fleeting thought meant to keep myself entertained as I hoped a spark would ignite an idea in my head, so lets go.

I find myself facing a new dilemma’s these days that is all based on that old “if I had of known then what I know now” way of thinking.  I had about a dozen surgeries as a kid all with the purpose of walking without braces, new untried procedures at the time, and 4 of the 12 produced the hoped for results.  One of the last major surgical procedures I underwent was a hip fusion of my left hip.

A lot of this was “new” ground for the growing speciality of orthopaedics and was a carry on from new techniques used with WW2 vets.  Medically there has been a tight tie between the veterans community and the polio generation due to the advancements being made in medicine.  My orthopaedic Dr. Vincent Murphy was a retired RCAF pilot and received his medical training courtesy of the military.  He was a good man and played a big role in my life from age 8.  He enjoyed me because, as he once put it, I had attitude and I was always up for surgery.

Polio kids were surgical try-outs for a lot of new techniques and we auditioned for surgical spots in what was called Grand Rounds.  Out-patient Rounds were held every Tuesday at the Children’s Hospital but if your parents got that call for Grand Rounds it was pretty certain you were being admitted.  For Rounds you stripped down for the doctor and your parents, for Grand Rounds you stripped down on an examination table in front of half a dozen doctors, another half dozen interns and maybe a dozen student nurses standing in the background taking notes.  While they are discussing me like a strip loin, I’m sitting there trying to figure out if I will sign up for Monday night copper tooling or take the leather activity again.  Monday nights were Arts and Craft’s night in the hospital. Continue reading “What We Don’t Know We Know…(revised)”

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…”

Crappy Way to End the Week

“If you don’t know history, then you don’t know anything.  You are a leaf that doesn’t know it is part of a tree.” – Michael Crichton

Happy Easter or whatever celebration you celebrate at this time of the year.  My Easter morning experience involved extricating myself from between the wall and the toilet in my bathroom.  Using the potty can be a delicate discussion and usually involves just as delicate an action but I’m going to throw this out there.

Made a poor judgement on momentum this morning so between the landing and a very lose screw (one of two that hold the seat steady) I overshot the landing zone taking time for a face to face with my toilet plunger.

It seemed like a good time for a mental distraction as I wiggled physically to regain a vertical rather than horizontal perspective of the room.  That distraction turned into an epiphany involving physics.

I’ve broken my fair share of toilets in my life but baste on what I hear (or don’t hear) I don’t think it is an occurrence for most people. Getting myself dislodged gave me some time to reflect on it.

toiletThis is the bathroom in my “wheelchair” apartment.  There is no way a wheelchair is getting in beside that but whatever code interpreter was issuing the permit seemed to think this would work.  What the hell, I’ve been here almost three years and made it work.  So please don’t start on me about accommodation.  I’ve done my fair share.

I’ll bet you have never thought of this but the next time you go to sit on the toilet pay attention to how important knee motion is to lightly sit on the commode.  That knee movement allows for a much more controlled PSI landing.  It’s nice equal weight distribution which is what a good toilet is designed for. Continue reading “Crappy Way to End the Week”

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”

Fear and Loathing…

“Fear is the mind killer…” Frank Herbert (Dune)

I came into the new year feeling a bit more rejuvenated having made the decision to look at the opportunities of “assisted living“.  It wasn’t an easy decision but the reality is I will be 67 this year and, like it or not, I’m a senior.  Accepting my age while recognizing the speed with which decrepitude is lapping over my body means I may have to give up a bit of independence but hell life is a trade off right.

That decrepitude I can handle but the slow erosion of confidence was harder to deal with.  That transfer into my car or the jump momentum from the ground to my wheelchair is becoming more difficult and that erodes the confidence level.  Those same issues are the high risk times for falls.  In my desire to think proactively and avoid potential hospitalization moments I would feel safer knowing there were some supports close by.  I am probably even more tuned into this at this particular moment having watched an ambulance just haul one of my neighbours off to the hospital.

thoughtsI spend last week putting some deep thought (and research) into assisted living apartments.  I quickly discovered that the private sector was out of my price range.  At the risk of repeating myself, $3000 a month seemed to be the average cost out there but that covered almost everything, meals, house cleaning, close emergency medical backup, some laundry service for my bedding plus the suite.  The suite has a kitchenette but not a full oven, no big deal to me but again $3000 is beyond my budget.  That appears to be the starting point for private services.

The buildings with subsidize suites directed any interested parties to the Island Health “Assisted Living” website.  As a life-time “professional patient” I know some of these things take time so I had to set some wheels in motion.  It took me 54 weeks to access the promised government assistance to cover half the cost of a $6500 wheelchair so I understand the need for perseverance.

I met all of the criteria (I thought), had identified a potential facility in Duncan and made the call to the 1-877 line.  I received an amazingly quick response from caller number one who took some basic information from me before telling me she would put caller 2 in touch with me.  Three days later I received a call from the Occupational Therapist (caller number 2) who wanted to book some time for a home assessment.  Fine, moving much faster than I thought it would.  She came by that afternoon.

Pleasant enough lady.  Semi-retired Occupational Therapist who does the occasional assessment for Island Health.  After a quick assessment, pretty straight forward.  I gave her a quick demonstration of how I transfer in and out of my chair.  Showed her I get in and out of the shower, again explaining how all of these things contribute to a “falling” risk and part of my rational for assisted living was risk mitigation. Continue reading “Fear and Loathing…”

Living with the Results

“Wisdom is the reward for surviving our own stupidity” – Brian Rathbone

A simple torn toe nail four days before Christmas has forced me to accept something I’ve been putting off for some time now, the reality of assisted living.  The ripple effect of such a nondescript activity can put in motion a tsunami of events.  I may be a little punchy over my recent hospitalization but there are certain realities we are all forced to face at some point.  The first ripple was the frightening idea that a simple torn toenail could put me back in the hospital.  It was on my left foot and I can’t reach my left foot due to my fused hip.

Hip Pin
This was screwed to my femur to fuse my left hip in a 3 degree fixed position

What is a “fused hip”?  Well it is no longer a hip with a flexible joint.  The hip doesn’t really bend.  It was a surgical technique used in the early day of orthopaedic surgery with polio kids.  It wasn’t exclusive to polio but we were good candidates for the trial and it fit my agenda.  After all there was nothing I wanted more as a fifteen year old in the 60’s than the ability to get rid of the last of my leg braces and wear tight jeans.  The crutches didn’t matter, to me the tight jeans were the epitome of normalcy.

The process was basic physics but I had cut so many physics classes I didn’t realize that.  It wasn’t until much later in life that I recognized the irony of cutting so many classes in a science that would play such a big part of my life, physics.

The pin to the left was put in my left hip in 1964.  You can see where the screw holes are and those were screwed into my femur.  The pin extending the other direction could be set at a variety of degrees by tightening the connecting screw (my doctor choose a 3 degree bend).  They then lace a thin metal wire to the femoral head to plot their next move.  After x-raying it to make sure they have the right angle they line up that extension bar and with a mallet they insert it.  Once that is done they shave bone chips off which they then transfer to the head of the hip joint and use that bone like a mortar that will graft onto the rest of the hip filling the joint area.

Six months in a cast from my chest to my toes and the hip is fused.  They also fused my left angle and now, based on the laws of physics, I would be able to weight bare on my left leg with out the aid of braces.  The combination of the two fusions would lock my knee in place.  Problem solve bring on the Levi’s. Continue reading “Living with the Results”