Long ago in a faraway land, I came down with polio. I was seven years old, and the main thing I remember about the coming-down-with-it part was refusing help when I was taken into the doctor’s office, and falling down in the waiting room, and being overwhelmingly embarrassed. I also remember being relieved the medicos were so certain I had polio that they didn’t give me the dreaded diagnostic spinal tap, something more feared than polio itself by children in the playground.
The following day, in the isolation ward in a hospital in Edmonton, Alberta, I remember my absolute delight when my best girlfriend from school showed up in the bed next to me. What a miracle, I thought. Poor Brenda was not at all delighted at the time, but we did help each other through our week in isolation.
It was 1953. The following year, the Salk vaccine came out, and by the end of 1956 polio was pretty much history throughout most of the western world.
It was a proper plague, and had been terrifying parents through the summer months for over a decade. It left hundreds of thousands of people, mostly children of middle- to upper-class families, maimed to some degree. I myself was paralysed through the entire left-hand side of my body for several months; I don’t remember being fearful, probably because I was assured by trustworthy adults that I would come good again. My girlfriend was weakened through the back and stomach.
This period of infection was what is now called Stage 1.
Stage 2 refers to the two or three years following the polio attack where the victim worked diligently to get the body functioning again. My own body slowly recovered and I regained use of almost all of it. Just a damaged ankle, known in the polio vernacular as a dropped foot, remained. I worked hard during this period, as we all did, using physio- and hydro-therapy and plain old gumption.
Inside polio circles, there’s a well-known syndrome which refers to the tenacity and industry of people who had paralytic polio. We were all unstoppable. There’s apparently a higher rate of career success for polio survivors than in a typical population. In some ways, the hard work of Stage 2 was a gift.
Polio victims came good.
That’s where Stage 3 kicked in. With the polio survivors, as we were now called, doing reasonably well, and no new cases occurring, our part of the world breathed a sigh of relief. All was quiet on the western front. Attention wandered to other pressing medical matters. Specialists in the field aged and retired.
Everybody was happy it was all over.
…Except it wasn’t, and that’s where Stage 4 enters the story. After several decades, polio survivors began to report new symptoms. The common theme was inexplicable fatigue, weakness and pain. The new enemy came sneaking in from the sidelines, disguised as ageing, stress and hard work.
As a proper stage, it was slow to kick in.
Part of the problem was denial, a trait that’s often attributed in the literature to polio survivors. After being stricken, and then rising above it—knowing we could rise above anything—a little setback like extra tiredness wasn’t about to slow us down. I recall my mother sending me a clipping about LEoP (Late Effects of Polio) some 15 or 20 years ago. In what was probably a typical polio-survivor reaction, I filed it deep in the cabinet, happy that it hadn’t happened to me.
A big part of the problem was that the symptoms, being mostly neurological, were challenging to quantify in a clinical manner. Anyone who’s suffered from something like Ross River fever or chronic fatigue syndrome will know what I mean. It’s hard to believe yourself, and harder yet to get someone else to believe you. Maybe it’s just getting old, you say (but why isn’t it the same for everyone else my age?). Maybe I just need more exercise (but why does a workout seem to do more harm than good?). Maybe I’ve become a hypochondriac.
The medical profession rallied. It had long been known that when that large percentage of neurons were bumped off in the initial polio attack, their undamaged cousins spread out, took over the territory and got things moving again. Turns out those big muscly neurons tended to have a limited life span and limited flexibility. They hadn’t signed up for decades of super-hard work and eventually spat the dummy.
Stage 4 was acknowledged but difficult to treat. There wasn’t a magic bullet to be found anywhere.
Well, there we go: I’ve given you an over-simplified version with no sensitivity to the nuances of individual bodies and the nature of their initial attacks. But the general story is this: if the muscles in the post-polio body, especially the ones that had been originally stricken, are over-worked, they get sore, weak and tired. They’re slow to recover. Vital amino acids are depleted. Though the muscles like a little exercise and stimulation, they definitely don’t want too much, and will pack it in completely to make their point.
I’ve done a lot of researching over the last year or so, as my own body shows more and more signs of something beyond normal ageing. I’ve sat glued to my computer, combing the web for what it can reveal. I’ve studied journals and scholarly articles…but the other day I had a revelation. I don’t know a single person in Australia who had polio, I said, and how strange is that? Housemate Eve reminded me about a friend we’d known decades ago, and I found a way to contact her. We had a great old conversation, and that inspired me to track down a post-polio support group in Port Macquarie, just over an hour’s drive from here. Yesterday I drove there to meet Gail, the group’s leader; I made a friend and took away a great deal of local information, wisdom and good will.
So here I am, back in my usual theme: community. It’s a community a lot of polio survivors resisted forming—where’s the professionalism of Toastmasters or the toe-tapping delight of a choir? But these are people who understand a lot about an important part of my world, and there are not many out there who do. Who else would appreciate exactly how important this Australian climate is to me? Or the health benefits of a good piece of steak, an afternoon nap, or time in the pool?
Now that I’ve left the state of Denial, I will join this post-polio community. But I will also work to raise awareness of my plight in the rest of my communities. As I move on in life, I will require more support, and it could just be useful to be able to ask for it.
Is there anyone you know who might be interested in making contact, or do you have a story to tell? Please leave a comment and let me know.
If you’d like to read a more thorough dissertation, try this gift from my new friend Gail: The Late Effects of Polio.
And here’s a short story I wrote on the subject a few years ago: Tina, the walking doll.