I don’t remember that day – the day I ‘got polio’. From what my family later told me I had a slight cold for about 2 weeks and then one morning I got up and every time I tried to walk on my right leg I collapsed. It was a lot for a toddler of 20 months to process. That really came home to me as decades later I watched my granddaughter at that same age move and climb and use her body. An Aunt recently told me that she still remembers the call from my parents in 1949 telling her about my having polio.
It seems that the majority of my childhood experiences – those that I remember - are mostly related to polio – and they aren’t necessarily pleasant memories. Until my teens I wore ‘corrective shoes’. I’m not really sure what they corrected but I am sure that they were very different from what all the other boys and girls wore. Around 1st grade I graduated from the ugly brown tie shoes to saddle oxfords – appropriate for the 50’s. I hated it when these shoes got scuffs – it showed so badly on the white part – so I polished them every night. As a result I will not polish shoes today and haven’t for decades. In May of each year our school always had ‘Field Day’. Of course everyone had to be assigned some field event so I always choose the potato sack race or some other silly event – none of which I had a chance at winning. On the day of the events and as my event drew closer I always started feeling sick to my stomach. Shortly before my assigned event I would relate this to my teacher and she always asked, ‘Would you like to skip your event?’ to which I always replied, ‘Yes’. Years later I realized that these physical displays were just too much for a child to endure and I wondered if my teacher had suspected the same. Field Day’s only redeeming thing was the hot dog vendors. I can still remember that taste. To this day I love hot dogs even though I only allow the pleasure now at festivals and sporting events. In school the daily period of recess was another trauma. It seemed that our classes only played team games like Red Rover, Dodge Ball, Baseball, etc. – things that you have to be picked for. As a slow runner with one leg shorter than the other I was always among the last to be ‘picked’. In my mind it was the last to be ‘chosen’. It was hard to never measure up. Lastly there was Easter when I was 12 years old. Remember the saddle oxford shoes? I had worn that style for my ‘corrective shoes’ no matter how dressed up I was. We were one of those families that went to church if the door was opened. On Sundays the other little girls would wear white lacy socks with black patent leather shoes while I wore saddle oxfords. Well, this Easter Mother relented and got me white lacy socks and black patent leather shoes with a strap. I just knew that I was going to walk into Sunday School and everyone was going to point to my shoes and exclaim, ‘Look at Cheryl’s shoes!’ Finally I would have shoes like everyone else. Much to my dismay I walked in and all the other girls had on hose and wore pumps. I was crushed.
During my 12th and 13th year I had a series of 4 operations to ‘correct the effects of polio’. The growth was stopped at the knee in my normal, longer leg so the shorter, polio affected leg could catch up (thankfully it did), there was a muscle transplant, a bone fusion for strengthening (I’m not sure about that), the heel cord was spliced and then my little toe was shortened as it was sitting on top of my 4th toe due to walking on the ball of that foot all my life. The plaster casts in those days were hot and I missed a lot of school – 2 quarters during the 8th grade alone. I’ll never forget the sound of the saw they used to cut off the casts and how it felt to be nicked by it.
After 8th grade and into college I was what is called a ‘passer’ in that it was not obvious anything was wrong with me. I did pretty much what everyone else did except my feet hurt much of the time. I was exempted from high school PE class but now wish I had been encouraged to be more physical as a child – just not in team spots but in an individual sport. My 20s and 30s were the most productive time of my life and also when I felt the best – except for my feet and they hurt much of the time.
The post-polio experience began for me on October 10, 1984. It was then that I slipped and fell while walking in my front yard breaking my right leg in 2 places just above the ankle. For the 2-3 years previous to this that same spot would feel like the point of a knife was sticking into my leg when I stood too long. After it healed from the break it has never felt that knife again. I feel the healing strengthened what had been a weakness in the bone. That healing was a difficult process – to the point of almost having a break down. In spite of the cast, crutches and wheelchair my life too soon returned to work and family responsibilities and my body was not able to keep up. I’ll never forget the night it all came crashing down emotionally. When the cast finally came off 2 weeks later the pain of forcing myself to walk was still excruciating even with crutches. There was no physical therapy. I remember a coworker looking at me quizzically and asking, ’Are you still using crutches?’ I felt she was really saying ‘Aren’t you trying to milk this too much?’ If only she had a clue!
Then there were the little things that didn’t make sense. In the summer of 1985 we visited my brother-in-law in Germany. He saw me struggle through a 10K Volksmarch and his comment was that I just needed to exercise more. AUGHHHHHHHHH! Later in the 80s I was accompanying a high school violinist and after about 8-10 minutes of practicing I wasn’t sure my fingers for going to stretch to the note my brain was asking for. Surely I couldn’t be that out of practice. In addition I suffered, and I do mean suffered, with being cold even in the summertime. And I couldn’t ever get a good night’s sleep. I had trouble going to sleep as well as staying asleep. There were many times that coworkers would ask me if I had hurt my foot. Apparently I was limping. I got so tired of this question I finally started replying “Oh, it’s an old football injury”. After all, men can get away with this reply so I figured it would work for me. I came to realize the extent of my limp was related to fatigue. The thought wandered through my mind ‘Could all these experiences be related to polio?’
I wanted to find a doctor that still saw people who had polio, so I started inquiring with my Internist who had just graduated from Med School. Surely he would know all the latest and greatest. Wrong. He just looked at me like I got off Mars. I also called a referral service at Emory where I had been seen for polio as a child but the only suggestion was to see an Orthopedist. Since I related those doctors with so much surgery during childhood I chose not to go that route. One day months and months later I had a light bulb experience. Warm Springs popped into my head and it was not far away from me. I called them and left the message that I was interested in seeing a physician who was familiar with people who had polio and although I preferred the Atlanta area, I worked for an airline and was willing to fly anywhere to see such a doctor (shows my desperation). Lo and behold to my surprise they put me in touch with a physician here in Atlanta at Emory. Since my earlier inquiry there the need of polio patients had been identified and was now being addressed.
Before my first appointment at the Emory Post-Polio Clinic, I was asked to complete a 6 page questionnaire. I was amazed to realize that so many things (symptoms) that had not seemed related might actually be making sense. At the first appointment I was diagnosed with Post-Polio and finally felt I wasn’t a hypochondriac after all. It was a validating experience for me and I have always appreciated their attitude of ‘How can we help you’. Finally I do not have to convince someone that I might have a problem.
In 1994 I applied and obtained disability from my employer and later from Social Security. Subsequently in 1997 I was required be reviewed by company doctors. After an orthopedist and a neurologist they sent me to a psychiatrist who was able to assign the label of ‘conversion disorder’. Immediately I called the state mental health association and also the national metal health association. Surely they were familiar with everything related to mental health. Wrong. These 2 associations had never heard of such. I felt the company doctor was really saying there was nothing physically wrong with me, it was all mental.
In the fall of 2000 I was once again told to see a company doctor for a review. He found me able to work 2 hours per day thus I was disqualified for my company’s disability plan. Since my company was experiencing hard times financially, I am certain that there was a great corporate plan a work to change unproductive employers back to productive employees no matter the cost. Within 30 days I was once again working 8 hour days since I couldn’t survive on 2 hours of pay per day. By choice I worked an afternoon shift since I am not a morning person. But even with this, my sleeping time grew longer and longer so that eventually I was sleeping 10 hours during my night. I became so fearful of oversleeping that I told my husband to be sure and be home at noon to make sure I was up. He also learned how to stand in the middle of the kitchen and read the directions on a box so we could have a meal before I went to work. I remember sitting at the table holding my head in my hands trying to get something in my stomach before embarking on my day. It took too much energy to hold my head up without help and additionally the fog inside it was so thick it just helped to be propped in my hands. After the horrific events of 9/11/2001, my company suddenly offered an early retirement package and I quickly raised my hand to volunteer.
As the years have passed I have learned about life style modifications and energy conservation. This has made a big difference in how I feel. I no longer push and push through the daily activities of life and try to do and be what everyone else is. APPA has been a great resource in helping me thrive with Post-polio.