"What’s this going to be like?" I nervously questioned myself as I drove from North Chelmsford to Newton to attend my first Greater Boston Post-Polio Association meeting last September.
Again I told my husband, who sat beside me, about my fear of meeting other polio survivors, explaining for the umpteenth time how seeing another person with scoliosis used to be so painful for me. "I’m really scared!" I confessed.
I had polio at age seven in September, 1952, back in Iowa. I was only in second grade at the time, and I had no idea then how this virus would alter the course of my life! On her way to take me to the hospital, my mother stopped at the corner dimestore in Mason City to buy me a large, beautiful doll who soon became my best friend, my confidante and my source of comfort during the weeks I was hospitalized. My parents came to visit me often; however, they had to stand out in the hallway to talk to me because my room was quarantined. Since they couldn’t be there to hug me and hold me, I turned to my doll whenever my IV had to be changed and when it was time for the hot packs on my legs. I discovered that if I hugged her very tightly, I wouldn’t feel the pain of whatever the doctors and nurses did to me. Finally upon being discharged, I cried when I had to leave her behind to be destroyed.
My scoliosis started becoming obvious in the fourth grade, and that’s when my doctors at Children’s Hospital in Iowa City told me that I needed to wear a body brace. It’s also when I first heard the word "scoliosis" and started to understand what it meant. One of my doctors pointed out to me that this is what his secretary had. I saw how crooked and out of balance she looked, and I didn’t want to grow up looking like her! The same doctor told me that if I had a great smile on my face, other people would never care what my body looked like because they’d never be able to get beyond the smile. He explained that humans are drawn to smiles.
I did grow up to look like my doctor’s secretary, and I learned how to smile. The piece of advice, however, that my doctor failed to give me was that besides smiling and adjusting to my body brace in the fourth grade, I also needed to learn how to talk about my scoliosis! As I became a teenager, I hated how my scoliosis had twisted my body. I couldn’t stand to look at my image in the mirror because I saw a freak looking back at me. I wanted to hide from the world; and as a matter of fact, the summer before I entered ninth grade, I tried to do just that. Nobody in my family noticed at all because by that time I’d become an expert smiler and I always acted as if everything was just fine and dandy. Inside, though, I believed I was "less than", I felt intimidated to walk into a room full of strangers because I was certain that I’d be met with stares, and I felt ashamed of what I looked like. However, during that summer I gave myself a pep talk and made up my mind that from then on I was going to throw myself into my studies and that I would force myself to do whatever I was scared to do. In other words, I made a conscious decision to become an overachiever: a Type A! And that’s exactly what I did, with great success!
Over the years, I kept myself protected from the pain I felt inside by living in denial. I worked hard at convincing myself and the world that I was "normal"; however, it just took catching a glimpse of another "scoli" walking down the street or shopping in a store to cause my heart to skip a beat and my stomach to churn. It was as if suddenly, and without warning, someone had pierced me with a knife. The pain would rush over me like a tidal wave, and it seemed as if I would drown in it. I’d quickly look away and hope that the person I was with wouldn’t have seen him/her too - almost as if this would "blow my cover". It was so painful for me because the other "scoli" was a reflection of myself and reminded me of my deepest shame and my self-loathing.
Likewise a few years ago when the animated version of The Hunchback of Notre Dame was popular in the movie theaters, I cringed whenever I heard anybody mention the title. Little children carrying toy likenesses of Quasimodo were everywhere that summer, and time and again I was forced to confront my pain.
About that same time my needs to overachieve and to strive for perfection had me spinning out of control, and my Type A personality started to crumble, sending me whirling into a tunnel of darkness and gloom. All of my inner pain rushed forward, and for the first time I was defenseless in the face of it. It demanded that I travel inside to examine all of my wounds and losses that had neither been grieved for nor had ever had the opportunity to heal. I knew that I couldn’t make this journey alone and reached out for help. I found a compassionate and helpful therapist as well as two wonderful 12-step programs: Adult Children of Alcoholics and Codependents Anonymous. Finally last summer after working through many core issues, I became ready to face my polio experience. I discovered much help and information on the Internet and started to correspond daily with other polio survivors from around the world. I also discovered the Greater Boston Post-Polio Association and decided to attend a meeting on September 20, 1997, to see what it was like. While very curious, I was also very nervous.
"There’s the church!", my husband exclaimed. As I looked in the direction his finger was pointing, I saw a man on crutches walking inside. Sighing, I whispered "Here goes!", and we got out of the car and walked up to the door. The minute we walked inside, an immediate sense of relief rushed over me, and I felt comfortable and relaxed as a man greeted us with an outstretched hand and a big smile. All around me were people with crutches, canes, walkers, scooters, leg braces - and scoliosis. I waited for the pain to make its first attack, but it never came. Instead, in its place, I felt a sense of excitement and interest. I was talking and laughing with people I’d never met before but with whom I felt so connected! I felt at home! I felt as if I belonged! It was a profoundly moving and healing experience!
After the meeting as my husband and I walked across the street to our car, tears began streaming down my face. Once behind the steering wheel I cried for several minutes. I cried for the little seven-year-old girl who had hugged her dolly so tightly in the hospital, and I cried for all of my brothers and sisters in this meeting who’d also experienced polio at a very tender age. I cried for those children and adults who’d had polio but didn’t survive. I cried for all the pain and physical limitations that we all struggle with on a daily basis. But most of all, I cried for the beauty and strength in these people who’d come together to meet in that church that afternoon. I cried because I felt so proud to be one of them! I cried because for the first time I caught a glimpse of my own beauty and strength that afternoon! I cried because at age 52 - 45 years after the polio virus attacked my body - I finally was starting to realize that my scoliosis enhanced rather than diminished my authentic beauty as a human being.
As I started the car and headed back to North Chelmsford, I told my husband that I could hardly wait until the next meeting!
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