Isn’t this a nice bit of synchronicity? – myself, someone living with having had polio, addressing people who’ve been working to eradicate polio most of my adult life – a few days before World Polio Day. It seemed to me a good opportunity to say thank you on behalf of the millions of children worldwide who didn’t catch polio as a result of Rotary’s efforts.
I was raised on a farm in rural Alberta, the westernmost of Canada’s prairie provinces, about a 2 hr drive from Edmonton, the nearest city. We had an 800 acre cattle and grain operation. My early childhood experiences live for me as happy, normal ones – riding on the thresher with my Dad, tunnelling through snowdrifts, playing with my dog Buster, getting into trouble painting the house with mud.
Much of that changed in October of 1953 when I was seven years old, just starting my second year of school. One afternoon I was dropped off by the school bus and had trouble making it to my grandparents’ house, a few hundred feet away. My grandfather, a soft touch, drove me the extra half mile to my home. I remember my mother scolding him for indulging my malingering, but by nightfall I was at a one-room doctor’s surgery in a nearby hamlet, and by midnight settled into the polio isolation ward at the Edmonton University Hospital.
My memories of the week I spent in the isolation ward are not horrific. My best friend showed up in the bed next to mine a day or two later, which delighted me – though I don’t remember her being at all delighted, as she cried most of the time. I remember watching my mother as she waved at me through a tiny window at the other end of the ward door. I remember having to leave behind my beautiful doll as she might have “the virus”, a word I learned early. These aren’t especially uncomfortable memories and in hindsight my parents must have suffered much much more than I did. My mother, now 99 years old, still speaks of it as one of the worst times of her life.
A bit of background: Throughout my childhood, poliomyelitis was a disease that swept through the Western world in the summertime and early autumn. Parents were tormented, as it was almost exclusively children who were affected. In North America, over the decade before the vaccine, hundreds of thousands of children were crippled and thousands died. Schools had delayed openings, swimming pools were closed through the summer months, houses were scrubbed til they shone.
But somehow the bug got through these safety nets where I lived in the country, and I caught the disease, along with 9000 other children in Canada that year.
An older school friend who caught polio at the same time fared very badly: she’d gone off to check on some sheep who’d gone missing, and she didn’t come home. She was discovered just before dark, far out in the fields, in a crumple, completely unable to move. She spent many months in an iron lung. I visited her there once, and have had trouble being in the same room as an iron lung since.
Myself, I was paralysed on the left side my body for several weeks. My mother and I stayed at my grandmother’s house in the city, in the desperate hope that a hospital bed in the rehabilitation unit would come available. It never did, as beds for children with polio were far over-stretched. Again with hindsight I think the reason I didn’t ever get into rehab was that my mother was so rigorous with my physio that my doctor felt I was as well served at home as I would have been in the hospital.
I had no idea at the time, of course, but what happens in the polio attack is this: about 2/3 of the motor neurons in the affected area are destroyed forever. The miracle is that the remaining 1/3 can swing into action, reach out to the abandoned muscles, develop to an enormous size and take over much of the workload of the dead neurons. In my case, although I had been paralysed on the whole of my left side, I got the entire use of it back again, with the exception of the big tendon at the front of the ankle. As a result, I had what was called a “dropped foot”, a common polio phenomenon.
About a year later, I was back in action again, going to school, running through the fields, getting up to many of the things an 8 year old gets into. Except I had a brace, a metal and leather device that kept my foot from dropping and me from feeling completely normal. I remember feeling the injustice of being chosen last for the baseball team just because I couldn’t run fast. Even worse, having to queue with my schoolmates for the first polio vaccine shot, just two years after I’d had the real thing. After all, I figured, I’d already paid a high enough price for immunity. For some of us, the vaccine came just a little too late.
My doctor, Dr Cooper Johnston – don’t ask me how I remember his name from all those years ago – was a gogetter, and put me through 3 surgeries, one every 2 years, transplanting functioning ankle tendons into the area where the defeated major tendon had been. None worked, in spite of my parents’ and my valiant efforts to do all the right exercises. Finally, when I was 14, he performed an ankle bone fusion – a very difficult operation that took me a long while to recover from. I formed some fairly serious views of life at that time – the only teenager in my class who clomped on crutches, couldn’t jive reliably and couldn’t go skating.
BUT: There’s a thing about polio survivors that you may have heard of, sometimes called the high achieving polios syndrome. We all worked so hard to overcome the handicaps. We developed the attitude that anything can AND MUST be overcome. Don’t try to stop us with your puny obstacles! We sought out challenges. So like many polio survivors, in adulthood I worked hard, pushed myself to the limit, became highly accomplished. That drive is something I’ve only recently given up – replaced by good old “she’ll-be-right” Mitchells Island style.
However, the story wouldn’t be complete if I didn’t mention the final unfairness: post-polio syndrome, also known as LEOP: the Late Effects of Polio. After decades of doing well and overcoming all obstacles, polio survivors began to discover inexplicable fatigue, muscle weakness and pain. We have an unusual sensitivity to temperature extremes, breathing difficulties, sleep challenges. Turns out those large hard-working motor neurons I mentioned earlier begin rebelling as we get older. They weren’t designed to put up with lifelong wear and tear. After the age of 50, our respiratory function, muscle strength, bone density and muscle mass decay at about twice the rate of non-polio people. As you can see, I’m doing fine! – but I have to take a lot of care these days. The rule of thumb is work 15 minutes, rest 15 minutes. Have an afternoon nap. Avoid temperature extremes. Exercise, but not too much. The post-polio mantra is: overuse it and lose it.
The good news is there is support out there. We’re a bit of a club, us old post-polio people. There’s a Port Macquarie support group, there are organizations like Polio Australia and Polio NSW, which provide rich information about best practice and help us find the right medical people. You can imagine that most of the young doctors in the Manning Valley have barely heard of it. (Mine has! She’s been trained up a bit.) Even though polio is history in this part of the world, post-polio is not. But we do get care and support from the vigorous post-polio community.
It’s been a good life. But you know, I’d give a fair bit to have been able to go for long hikes, to click around in high heeled shoes, to tap dance like my mother did. Life is good, but I’d much rather have had the vaccine. Rotary’s work has been invaluable. Never give up that fight.
Before I close there’s another little story I’d like to tell which relates to Rotary. Rotary has long held a special place in my heart, not only because of their work with polio.
When I was 15, about a year after my bone fusion, the Drayton Valley Rotary Club held a public speaking competition on the subject of nuclear disarmament – a hot topic in the early 60’s. Anyway, I won! And that gave me a 3-day train trip all the way across Canada to Ottawa, the country’s capital, where I met with a hundred or so other young people and participated in a mock parliament at the real Parliament House. That event was an awakening for me. Although I thought I’d die of homesickness at the time, that adventure opened up my thinking about world geopolitics, which was no doubt a factor in our moving to Australia 38 years ago – along with the great climate and superb people.
I know Rotary is still doing exactly that kind of thing and can personally testify that those youth programs produce far-reaching results. You’ve touched millions upon millions of lives. As one of those lives, I thank you deeply.