Living With Polio
RECONNECTING AFTER 55+ YEARS!
Beverly Schmittgen, EdD
“Joyce Tepley, Joyce, Tepley,” I kept repeating to myself. I KNOW her!
That was my first thought after finding an article she had written for the newsletter published by the Post Polio International organization in St. Louis. I distinctly remembered that she and I had had beds next to each other in the polio ward at Cleveland’s City Hospital back in August of 1952. She was a petite little girl with dark brown hair and a friendly personality. I also recalled that her younger brother, just a baby at the time, had been in the same hospital due to having polio as well. It was his arm that was paralyzed, but Joyce and I both had paralysis in our legs and stomach muscles. I wondered what had become of her. I just HAD to contact her!
Since her email address was published at the end of her news article, this was easy to do. I quickly sent her a description of myself with an overview of my post-polio symptoms and why I was writing to her. I didn’t know where she lived and what she had been doing during her adult life, but I sure hoped to find out!
Her response was delightful. She told me many details about her schooling, her move to Dallas, her career as a social worker, her 20-year marriage, and her symptoms of post polio syndrome. She also wanted to know more about me, so we began a barrage of emails. We soon discovered that we could arrange to meet each other within the next few weeks. As luck would have it (and lots of serendipity!), my husband and I were planning to drive to Texas for a family wedding, so we could easily meet Joyce and her husband Phil during our time in Dallas. We had such a delightful evening together, dining at a local restaurant where we weren’t rushed so we could talk and talk. . . This was just the beginning of ongoing communications and rewarding visits with each other over the next 6 years.
Email became a wonderful tool for sharing our life journeys. I learned that Joyce had graduated from high school here in Cleveland and then attended college in Florida and graduate school in Dallas. She never completely recovered the use of her legs, so walked for many years with braces and crutches until that was not longer possible. Then she adapted to using a mobility scooter, but even more difficult were her increasing difficulties with breathing due to severe scoliosis. Her working hours had to be limited. She eventually started her own social services business to accommodate her need to rest more often. At night, she had to use oxygen in order to sleep adequately. Did any of these difficulties keep her from enjoying life? No! She adapted amazingly well to her circumstances. She told me how she and her husband had enjoyed traveling by car on numerous trips and by taking cruises. She also frequently drove herself across several states to visit with dear friends and even flew into Cleveland for family visits whenever she could.
The next time I saw Joyce was more than a year later, when we both attended the International Post Polio Conference in Warm Springs, Georgia. This location was perfect for post-polio people like us because of all of its history as a retreat for FDR and for the hundreds of children who had lived there, attempting to recover from polio in the warm mineral waters. The facility continues to be a rehabilitation center, but now it’s for people with other neuromuscular disorders as well as for wounded veterans. I didn’t get to spend much time with Joyce at the conference, but my husband and I did attend a session which she co-presented which was about writing her memoir. I was gradually trying to write my own memoir and found her to be very inspiring. We had a pleasant chat afterwards and promised to try to meet again in the future.
Several years later, Joyce decided to return to Cleveland for her 50th high school reunion. This provided us with an opportunity to spend some “quality time” together. After her reunion activities and her visits with old friends, we spent a day together. First, I drove her to Camp Cheerful, the camp for handicapped children that she had attended in Strongsville, Ohio as a child. She was delighted to see all the facilities, which remained much as she had remembered them. It is now used by people with various disabilities throughout the year. We had an interesting discussion with the current director and took lots of photos. That evening, after dinner at my house, we poured over some of my old scrapbooks and photo albums that I had recently unearthed. Among my memorabilia were items that connected Joyce and me even more than either of us had remembered,! How amazing to discover that we had obviously attended the same Catholic elementary school, in the same grade but not the same class, when we were in 5th and 6th grade. Since we were the only 2 kids in the school with leg braces, it’s hard to believe that we didn’t remember each other, but the evidence suggested we did. I still had a post card Joyce had sent me from Florida during that time and I also had a booklet of signatures of classmates that she remembered. Another case of serendipity. . . I was so glad we were becoming reacquainted at last.
During our visits, emails and phone conversations, I soon discovered that Joyce is a multi-talented person with a keen mind and a loving heart. She had been involved in numerous advocacy efforts for disabled people over the years. Despite her increasing mobility problems and her severe scoliosis, she never lost her will to help others. Her most recent efforts have been to publish a book based on her interviews of people with various debilitating disabilities to discover the traits that help them to not only survive, but to thrive despite adversity. My impression is that she is a prime example of this! I learned that over a period of several years, she had worked diligently to improve her writing skills by enrolling in several classes, learned how to do on-line publishing, won recognition as an aspiring author, and acquired an editor to help her. She worked diligently despite a terrible bout of pneumonia that left her weak and demoralized for months and months. After her gradual recovery, she resumed her writing (and rewriting and rewriting) over the next year and has finally reached her goal of publishing a book*! She is currently attending various conferences to promote her work, and to hopefully recoup her upfront expenses. What a paradigm of persistence she is! I find her humility, endurance and positive outlook to be a tremendous inspiration. She is also an insightful person with great wisdom and compassion—a wonderful friend whom I feel blessed to have reconnected with at this late stage of our lives.
*Thriving Through It, How They Do It: What It Take to Transform Trauma Into Triumph by Joyce Ann Tepley.
FRIENDSHIP RENEWED BECAUSE OF POST-POLIO
Joyce Ann Tepley
I couldn’t believe it! A voice (email voice) from the past. And not just the past, but the very time in past when my life changed completely from active able-bodied, love my body, could do back bends, ride full-tilt-in-the-wind on my bicycle, jump rope, run away from the Indians who were my friends down the street, and take my body for granted. It all came slamming back. The minute I read the email, I was transported back to that bed in that ward filled with little kids like me who were scared and sick. I could not raise my head off the mattress or move my legs. My arms were okay. It took a month of those dreaded hot-packs and done-to-you stretching and lifting exercises before I could sit up in a chair without collapsing. My parents and grandparents eventually were allowed to visit and touch me. I was vaguely aware that my baby brother, nine months old, was also in the same hospital at the same time having gotten polio in his right arm. They were afraid it was the bulbar strain that would have affected his breathing, but he was lucky and went home within two weeks with Mom and Dad given instructions on how to exercise him. What sacrifices they made and how scared they were, I will never fully appreciate.
It is sad to admit that I did not remember who this Beverly was who was emailing me, but I believed her when she said we were in beds right next to each other separated by a partition. I squeezed my brain cells that hold long-term memories but could not conjure up an image of her. For her to remember me and my name and make the effort to get in touch with me was incredible. I was simply delighted.
After many emails back and forth we were able to arrange to meet. I was so excited to finally see a long-lost friend who I shared such a significant time with. I hoped I could remember her when I saw her. In fact, I still didn’t remember her, but then we both were grown up and changed a bit. We had such a magical time, in front of our husbands, over yummy steaks comparing what we remembered about that time in our lives. I remembered a curtain between us. She said it was a wall with glass so we could see each other if we were sitting up. I actually felt comforted by those hot packs. She was terrified of them. She stayed in the hospital, then was sent home a few weeks after I was transferred to a children’s rehab hospital out of town where I lived and relearned to walk again for the next nine months. After a few hours reminiscing in the restaurant our bottoms were sore and our voices hoarse so we vowed to keep up with each other and parted. We have kept that promise. Old warriors have a special bond with each other.