Please doctor, look at my X-Ray, look at my medical history, look at ME.
By Susan LoTempio
In that preoperative state that wipes away all cares and fears, I lie on a gurney waiting to be rolled into an operating room. Usually, medical personnel dressed in their green scrubs with masks dangling from their ears rush past the gurneys ignoring the frightened people on them. This day, though, some staff at the University of California at San Francisco Medical Center stopped to ask, "Are you the polio case we've been hearing about?“ "Yes, I am," I replied with a raspy voice tinged with surprise. That question would normally irritate me, but at that moment I was calm due to my drugged state and surprisingly flattered. Their response? "We’ve never met anyone with polio before. "Everyone’s talking about you because your case is unique.“
Unique? Even though it's estimated that approximately 1 million people in North America are living with the aftereffects of polio today (there were more polio survivors back in the early ‘80s when that surgery took place), we’ve been practically invisible since the Salk and Sabin vaccines ended the U.S. epidemic - and the headlines - during the late 1950s and '60s.
I grew up in Niagara Falls, NY, with two older brothers who, in October 1950, had the flu-like symptoms of the polio virus, then fully recovered. But I was only 8 months old and it paralyzed me from the waist down. What I remember most from my childhood and adolescence is pain from a right leg brace, a raised, heavy left shoe, and wooden crutches.
At every appointment, the doctor insisted I had to walk regardless of pain. My parents approved every procedure the orthopedic surgeon wanted to perform, because he gave them hope I could live a “normal” life. The surgeries weren’t supposed to ease pain or prevent falls. Instead, all those fusions, muscle transplants, and re-fusions were supposed to make me vertical. They never worked, but consequently I’ve spent almost a quarter of my life either in the hospital, an operating room, a physical therapy room, or doctors’ offices/clinics/waiting rooms. No wonder I judged my personal worth on whether I could walk. If I pleased the doctors and my parents, I felt good about myself. In my parents’ eyes, my being stuck in the hospital for part of the summer, and not playing with friends because of the heavy cast, was a small price to pay.
By the time I was 12, I’d had enough. I realized that braces, crutches, frequent falls, broken bones in my hands, and pain in my left hip were making me miserable. It didn’t matter how many surgeries or hours of physical therapy I suffered through, the best I could hope for was precarious shuffling, not walking. So, I cast off my braces, dumped the crutches and shoes, and started using a wheelchair. My parents understood and supported my decision but when we met with the surgeon for our usual appointment, he glared at me and said in his authoritative and loud voice, “If you don’t walk then you’ve failed.” I’m sure he wanted every child in that polio clinic to hear him and not challenge him like I did.
I’ve never regretted the decision, but it didn’t take long to see what I was up against, starting with the slippery marble stairway leading into the Catholic elementary school my brothers, sister, and I attended. One nun, bless her, pulled me in my wheelchair up and down those steps every day of the school year. It would have been more dangerous if I’d been on crutches, and I would have missed the rhythmic and strangely comforting sound of the rosary beads she wore around her waist softly hitting my wheels. I soon learned to avoid situations I couldn’t control (barrier wise) but there were still bumps along the way (like my brother who delighted in tipping me over and leaving me flailing on the living-room carpet). And although I’ve always been an avid reader, I never experienced a library until high school because our community library had what seemed like a stairway to heaven at its front door.
Was it wise that 12-year-old me decided my future mobility? At that age, I wasn’t aware of the stereotypes and bias harming those with disabilities. My mother set the same goals for me that she expected of her other children: good grades, college degrees, careers, and happiness along the way. To accomplish all that I knew I could not be restricted by crutches and braces or by the senior members of the family who believed I should be cared for, not sent off to university. My mother adamantly refused.
As an adult, I’ve accomplished many goals. I had a long career in newspapers as a copyeditor, reporter, section creator and department head. My writing has been published in national magazines and newspapers. I’ve traveled, lectured, taught and most importantly, raised a daughter who has become an extraordinary adult.
But now in my mid-70s, I’m dealing with Post-Polio Syndrome, which seems to worsen each year. None of the surgeries have benefited me in the least, and that’s something I think about as I cope with the increased weakness, fatigue, and pain of PPS. Not one doctor ever mentioned I had a dislocated left hip. Why else would I have chronic pain in that part of my body? I had assumed every human suffered the same pain in the same place - as part of the “human” condition - until I was X-rayed in my 20s. My parents were angry when I told them, questioning the trust they had given the surgeon.
My stomach aches every time I fill out a medical history form. Bypassing the long list of chronic conditions, I go straight to "Other" and add Polio. In the section asking about surgical procedures, I write: Too many to list here, and flip the sheet over to detail fusions, muscle transplants, nerve releases, carpal tunnel repairs, and many more procedures. More often than not, the MD, RN, NP or LPN who meets me in the exam room will ask, "Why are you in a wheelchair?," not having bothered to check the medical history form I’d just completed. "Polio," I respond for the millionth time. "Wow, I never met anyone with polio," is their predictable response.
That scenario might be funny if it didn’t symbolize a general lack of knowledge about our disease and those who still deal with it, perhaps leading to inadequate medical care. One specialist listed Multiple Sclerosis as my diagnosis. It appeared on every report and receipt, no matter how many times I requested a correction. If I weren’t vigilant, would it affect my treatment? Could I be prescribed the wrong medication?
If a lack of medical knowledge about polio is worrisome, so is the tendency to roll all people with disabilities into one group. If you’re a wheelchair user, then your complaints and problems mirror all other wheelchair users, and the medical outcome should always be to get you out of that wheelchair and onto your feet. Such thinking could not apply during the Covid pandemic when the stakes were about survival not walking, and it shouldn’t apply now.
A few years ago, I went to an orthopedic hip specialist for advice on how to handle increasing pain on that pesky left side. As he entered the exam room, he looked me over quickly, and said: “Why aren’t you walking? What can we do to get you walking?” “I’m not here about walking,” I replied, adding a fast and furious synopsis of my medical history and the reason I was there. His response: “You should be up on your feet.”
“Look at my X-ray,” I suggested, trying to get him off that track. “That hip is not a candidate for a hip replacement I’ve been told many times, and besides, I am not here because I want to walk. I don’t.” “There must be something we can do to get you out of that chair,” he repeated, sounding like the proverbial broken record. “Look,” I said, my voice rising, “after all these years, it’s ludicrous to think I should walk. I’m here for advice on managing the hip pain caused by dislocation and arthritis.” The surgeon shrugged, shook my hand, and said he’d write a prescription for pain medication, which I hadn’t asked for, and if he had bothered to check my medical history, would have seen I was already taking it. That was it; he was out the door, never to see me again.
Not long after, on a cold and dark Saturday night in January, I fell from my wheelchair while hauling a too-heavy bag of garbage out to the garage. A different orthopedic surgeon who saw me in the hospital was cross-eyed as he studied the X-ray of my left hip. “What’s going on here?” he asked, apparently not used to a 70-year-old dislocated hip marked by crumbling bone and arthritis. Eventually he found a thin break at the top of the femur. But before he could utter another word, I blurted out, “No surgery. I don’t see the point.” With a sly smile, he responded, “I’d have to agree. But let’s see how you heal.”
Recovery wasn’t easy but along the way I met some home health care workers who were familiar with the challenges of polio and eased me back into everyday life. Plus, a surgeon who actually listened to me.
That was a first, and hopefully not a last, though I know the odds are against me.