I began this many years ago simply as a “story telling” exercise for the sole purpose of capturing “one persons perspective” of growing up with a disability. That perspective was mine and I have come to realize over the years that I have been all over the map with my focus, to much activism and political frustration but little information about history regarding healthcare advancement. I am going to return to the original concept of “story telling” based on my experiences of growing WITH (not up) the world of disability and healthcare. They really can’t be separated due to the interconnectivity of all of the factors involved. I can’t see any sense in me trying to explain things policy makers have already captured in the variety of silo’s that make up healthcare.
Today I would like to dedicate this chapter of the story to Ben Stelter, a little six year old who just lost his battle with cancer. When I was a child I would never have made it to the point Ben did. The reality of those day, cancer kids just died, I can’t sugar coat reality. Ben managed to capture the hearts (and hopes) of the City of Edmonton due to his young love of hockey and the Edmonton Oilers. The Oilers took Ben under their collective wing turning the unimaginable horrors of cancer treatment into that privilege of “feeling happy” which every child should have. The Oilers, despite the Flames/Oilers age old rivalry should be applauded for bringing some happiness into Ben’s life. This also brought out the compassion of a City, compassion something that seems so parched in these trying times. RIP Ben and the City of Edmonton can sleep well knowing they injected happiness into the young persons short time on earth helping override the injection of the horrors of chemo and radiation treatments.
Chapter One
Times change and we supposedly advance. I contracted polio in 1953 (I was 3 years old and two years ahead of the polio vaccine). At age 5 I was the Winnipeg March of Dimes Poster Child. I have grown up exposed to the importance of optics. It plays a big role in our life and, like Ben, can have a wonderful impact on the mental health of a child. Those optics play a big role in our future development but can wreck havoc on our developing belief systems. For young Ben it meant a short life of medical misery while his joy of hockey brought happiness, and a smile, into his life. He became, not planned, the poster child of happiness and a rally point for the collective compassion of a City. As this article title indicates, Ben became part of the pre-game “routine”.
Meanwhile, my “cuteness” resulted in raising $9000 (what seemed a lot of money in 1955) and the closest I got to hockey was the presentation of a hockey stick, personally autographed by the complete 1955 Montreal Canadiens hockey team. Winnipeg use to have a “schmocky night” as part of their annual march of Dimes fund raising season which is where the hockey stick was presented to me. Names like Maurice (Rocket) Richard, Jean Beliveau, Charlie Hodge, and Jacque Plante to name a few. My father, a die hard hockey fan and, long before the days of a TV in every home, made Saturday Night Hockey (original six) family time. He would gather us around the radio to listen to Foster Hewitt doing the play by play while mom darned socks or some other household routine. He was so proud of that hockey stick.
As a five year old kid that hockey stick meant little at the time but to my father it was like a shrine worthy of the protection provided in some museum. He shellacked that stick and kept it safe for over 40 years. Sometime after his death (1998, cancer) I went looking for that stick in his belonging but it was gone. The last my mother remembered seeing it was when they became southern snow-birds around 1994 and put a life time of memorophilia in storage, hockey stick included. It’s where abouts (a little trivia, the word “abouts” has been considered obsolete since the 17th century), to this day remains a mystery.
There was no such thing as “universal healthcare” in the early days of my polio. In fact there was little in regards to legislation or policies when it came to healthcare. Healthcare and knowledge was really in it’s infancy when it came to knowledge. During the major Manitoba epidemic of 1953, what I dubbed as “The Summer of Silence“, the City health department (termed used loosely) send street spraying vehicles and douse the areas with DDT. Kids ran behind it trying to enjoy the “cooling mist” (all public pools were closed that year due to the threat of the polio epidemic). Do that today and you would have child welfare all over you. The use of DDT was made illegal in 1985, however, despite the health threat, this concept of “profits before people” gave businesses until December 31, 1990 to sell their existing stock, again policies that contradict but the policy was created and protection from a poisonous chemical was achieved. Again, optics!
Due to the Canadian patchwork of health practices my parents migrated to Calgary in 1957 so I could receive treatment. The, then, Junior Red Cross Hospital for Crippled Children, was the only centre on the prairies offering “free” treatment to polio kids. As I pointed out in my last post that hospital (which became the Alberta Children’s Hospital in 1972) became “home” for many kids with a variety of disabilities however polio-kids ruled the roost. That “free” concept I mentioned came with an unwritten agreement, we were an excellent demographic for the practice of trying new orthopaedic surgical procedures. I don’t mean that in a negative way, it was part of the trade-off. The community had no idea what to do with us due to the sheer numbers of kids that, up to that point, were destined to spend a “short life” in an institute. The community didn’t have the means or know how when it came to building “inclusive” communities. Many small towns did, towns where the sense of “community” was strong however, in the long term, urban living was almost demanded just to have access to services. Try getting your portable cardiac monitor, or your insulin pump, or your $30,000 dollar high end power wheelchair serviced in a town of 2000. Physically, realistically and fiscally, it just isn’t going to happen.
So back to the Children’s Hospital, it was a family to many of us, not all. I still know people who continue to have a hate on for the Children’s. They have chosen to hold onto the memories of the pain and discomfort associated with so many aspects of the reality of the pathway to survival. the whole “glass half full” type of policy. They have chosen to maintain the “glass is half empty” component of that old adage. Me, I just keep replenishing the glass (there could be a smiley face emoji here but again, that’s just another form of optics).
However, to me, the Children’s was a family and, like any family, we had our good and bad moments. As the title indicated we did have our routines. We knew (as a 10 year old) at 6am the night staff would be going from room to room waking us up with a k-basin (a kidney shaped metal container). The k-basin contained a small amount of white powder (baking powder…if I was describing it using an 80’s analogy I would say about an 8 ball amount)) and our toothbrush so we could brush. They would also distribute metal basins filled with lukewarm water and a face cloth so we could wash up in the morning. No bathrooms in patient rooms in those days. They went from room to room and the “hive” began its daily buzz.
At 7:30am the newly arrived day shift staff would start collecting all of those k and wash basins while dropping off our breakfast trays. Breakfast in bed was not a “Father or Mothers day” treats but routine in the hospital and after breakfast the real race for routine began. Those booked for surgery, for all the right reasons never had a breakfast tray, but those who weren’t began the mad scramble to get ready for the 8:30 physio work outs. Not the yoga gatherings of today. The physio department was on the first floor with physical therapy on one side and hydro therapy on the other.
I spend more time than I care to count “practicing” walking up and down the hallway to build up the strength needed to live a life time walking with crutches. This usually also involved “arguing” with physio staff over the benefits of “four point” walking (one crutch forward, one foot forward, the other crutch forward and the the last foot forward). My “swing through”, to me, was much faster and easier (two crutches forward and swing the legs, a fast rhythm but difference muscle groups), concepts lost on a ten year olds brain. That was part of the “routine” of growing up in a hospital (and boy am I simplifying this). I forgot to mention the distribution of your daily wardrobe. There was a large clothing closet on each unit where our “fashion statement” clothes of the day came from. We didn’t bring our own clothes since getting your own clothes back when laundry was all done by an industrial laundry room somewhere in the bowels of the hospital.
One of the other concepts of physio was the lining up in front of a wall of mirrors with a row of, what passed for tumbling mats in those days, so we could practice “falling”. We would be lined up in rows of about ten kids while the physio walked back and forth behind you. Every now and then she would give someone a push so we fell forward. It wasn’t done out of cruelness, it was to learn to let muscle memory take over for any unexpected falls in the future. Do that a couple of hundred times and muscle memory is certainly instilled. Falling has never been a problem for me since. This was a practice that was also done based on age. It was usually the 8 year olds who would receive this kind of physio activity. If you didn’t know how to automatically fall by the time you were 9, well you were on your own. There was purpose to every routine we had in the hospital which, may, have been adjusted based on your physical capabilities, no sense in learning to fall if you were one of those destined for a life time in a wheelchair but the ability to transfer safely from your wheelchair to, say, a toilet was a teachable skill in physio..
Once the morning physio was out of the way we headed for the classrooms to begin our school day. And, trust me on this, unlike community schools there was no such thing as “cutting classes”. The only thing that got you out of the classroom was surgery and even that didn’t guarantee freedom from learning. Surgical days were fine but by day 2 you would have the nurse on one side of the bed giving you a shot of pain killers (and for todays nurses this was a period when nurses carried their own file to sharpen the “bore”, width of a needle) while the teacher was on the other side of the bed giving you your lesson plan of the day.
At 11:30 morning classes ended and everybody scrambled back to their rooms for lunch. Student nurses (following their morning in their own classroom) pushing beds out of the school rooms back to the patients room for lunches. Lunches were always followed by a mandatory “rest hour”. Mid day rests were mandatory and one of the contributing factors to my title as the “hellion”. Each room door spring would allow the door to close with a 12″ gap between the door and frame (you had to pull the door closed from there) but I always thought it was great fun to balance a plastic water jug (each bed had one) on the upper lip of the door then pull the cord used to call for a nurse so we could watch the nurse get soaked when she pushed the door open. We were kids looking for fun….
That’s it for now, so do you have a routine or are you trapped in a rut….
A Poster Child's Perspective 