The Disease That Never Quits

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I have only recently talked about this fact: I had polio when I was 12. Everyone looks at me strangely when I say this, like I’m a dinosaur. No one gets polio anymore. But they did when I was young. I was one of the first to get an experimental vaccine, which my parents worked hard to get for me. Unfortunately, I think I was in the control group.

One morning while I was dressing, I noticed that I had trouble bending down to tie my shoes and I had to force hard to get my chin to my chest. I told my Mom, but knowing that I had gotten a vaccine, she didn’t pay much attention. A couple of days later, I told her I COULDN’T tie my shoes. By that time, the word was out. The beach club where I swam and played tennis was closed because a number of the children had come down with the bulbar form of polio and were in iron lungs at our local hospital. Iron lungs were big machines that breathed for people whose diaphragm and rib muscles had been paralyzed by the polio virus.

iron lungMy mother had our family doctor come to the house to examine me (yes, they made house calls in those days!). I wasn’t part of the conversation, but Dr. Spelman said since I was still breathing well, he considered I had a light case and could recover at home. Recovery involved basically what I like to call TOT – Tincture of Time. There was nothing else that could be done.

What this meant is that I was confined to bed until Dr. Spelman determined I could resume a normal life. That meant moving across the hall into the guest room, which was large, and had wonderful views of the ocean and a large bed. It also meant a bed pan; no getting out of bed. I was to lie flat and still. I had a radio for entertainment and piles and piles of books: Nancy Drew, Hardy Boys, Sue Barton, and anything else my parents brought me from the library. Luckily I was already a voracious reader, but it was lonely during the day. My parents hired a young woman from the Boston area to take care of my brother while they worked and they were gone morning and afternoon. Dad came in to gave me a massage every night to ensure my muscles remained supple.

About six weeks later, I was allowed downstairs for the first time, but Dad had to carry me because I couldn’t walk. My muscles were too weak. But being young meant a fast recovery and for years, I played every sport under the sun, enjoying all the activity. Unfortunately, polio is a disease that keeps on giving.

As I understand it, this is what happens: A motor unit is formed by a nerve cell (or motor neuron) in the spinal cord or brain stem and the muscle fibers it activates.  The polio virus attacks these specific neurons in the brain stem and spinal cord.  In an effort to compensate for the loss of these motor neurons, surviving cells sprout new nerve-end terminals and connect with other muscle fibers.  These new connections may result in recovery of movement and gradual gain in power in the affected limbs. Years of high use of these recovered but overly extended motor units adds stress to the motor neurons, which over time lose the ability to maintain the increased work demands.  This results in the slow deterioration of the neurons, which leads to loss of muscle strength.

And this is happening to me. You can’t exercise your way back to strength, you just exercise to keep yourself going. There is no treatment, no drug, no magic bullet.

I was lucky. I could have been in an iron lung. A colleague of mine who had also had polio as a youngster, walked with two canes and couldn’t stand up for long periods of time for as long as I knew him. I am still fairly active, even though long hikes and extreme exercise is no longer possible. I was lucky, but yes, I’m a dinosaur.

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11 thoughts on “The Disease That Never Quits

  1. Jemima Pett

    I’m sorry to hear this, Noelle. I hope that the weakness takes a long time to get worse. My brother had polio when he was young – maybe about 5 since it was before I was born. I understood it affected his arm. I have no idea if it is becoming a problem for him, but maybe I should just ask.

    It’s amazing the advances in science in the early 1950s.

    Jemima

    • Thanks, Jemima. Up until recently I have not wanted to confront what was happening to me, but one day I realized I had to do it – I’ve actually written a short story about it. I just hope with exercise I can keep the weakness at bay.

  2. I am very moved by your story, Noelle. I had no idea that polio could go on affecting a person for life. What a terrible and frightening time it must have been for you and your parents and so sad that such an outcome should result from their doing their best to protect you.

    • Thanks, Sylvia. I am still hoping that something will be discovered that will keep me moving for years to come. I can still swim 40-50 laps a day in my pool and can manage modest walks. I’d love to be able to play tennis again!

  3. Noelle Yes you definitely needed more than 150 words. I feel for the kid you were and the adult you now are. You were so lucky that you had it mildly and it didn’t stop you doing the sports you love as a young person. Perhaps having the vaccine was why you had a mild case? It is hard getting older and losing the use we used to have of our bodies without having to deal with polio effects as well. Funnily talking about dinosaurs I nursed the last woman in Australia that was still living in an iron lung. She had been in it since the early 60s and had never recovered enough to get out of it. She had reached the point where she was getting chest infections and needing ICU where we ventilated her with positive pressure until her recovery was such that she could return to her iron lung. It certainly looked like a dinosaur in amongst all our sophisticated equipment.
    Its sad to read that polio is again on the rise in countries like Syria and in the refugee camps.
    Your choice of books was one that I would have liked. I wasn’t a huge fan of The Hardy Boys but Sue Barton I couldn’t get enough of. Perhaps she is the reason I became a nurse….
    I hope you are successful in keeping going Noelle and I guess if you slow down you are lucky you have writing as a pursuit you enjoy. Cheers Irene

    • Thank you for your kind wishes, Irene. I WILL keep going as long as I can. Slowing down is not an option, I just have to take more rests along the way. I swim everyday and reasonable walks are still possible. Anh exercise where I have to really push myself hard seems to shut me down for a while. I plan to get some traveling in next year (after my daughter’s wedding) while I still can manage it.
      I was amazed to hear there was someone still in an iron lung. What a dreadful way to have to live your life. By comparison, I had a charmed growing up.
      I also thought of becoming a nurse, then was nudged by my parents to think about becoming a doctor – but the idea of being one of only one or two women in a medical class at any medical school put me off. I also tried to apply to the US Naval Academy – a real dream of mine – but they weren’t accepting women at the time, darn.

      • Yes do what you can while you can. Where are you planning to travel to?
        It would have been a nightmare of a life. She was a young adult when she contracted it and did not see anything other than her room until we organised funding for a portable ventilator and we (not me personally but the hospital) managed to take her to a shopping mall. You can imagine her delight and shock at how the world had changed whilst hers was so narrow.
        Yes it was a real battle for women in those days. Pity about the navy but hopefully you are happy with what you did.

  4. Noelle, what a frightening experience to have gone through – and yet to have to continue confronting even now at this point in your life. When I think of polio, I think of FDR. I’ve read that Mia Farrow also fell prey to it as a child.

    I wonder how much the polio as shaped you in terms of your drive and ambition? Perhaps the desire to achieve so much was initially hatched while confined to bed? You are a marvel.

    I wish you many years of active, healthy life. ❤

    • Thank you so much for your wishes. I’ve often wondered about just what you mentioned. I am a very type A individual but always thought I got that from my Dad. I certainly was a hyperactive kid in terms of sports…I miss being able to play tennis and hike.

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