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Surviving the Wheelchair

By Barbara J. McKee

April 5, 2002

I’m getting old. At 43, I have the aches and pains of a person who’s in their 60’s. I’ve been a wheelchair user for nearly 28 years. In those 28 years I’ve developed a variety of illnesses and chronic problems that most people don’t get until they are well into old age. I have the bone mass of a 75-year-old woman. I have gastro-intestinal problems that most people never develop. Yet, I continue with my life in happiness and hope. I am something of a medical miracle. I never wanted to be, but—I am. 

Being born with severe spina bifida in 1958, I wasn’t supposed to live this long. My parents told me of the dire predictions of my future. They were warned they shouldn’t expect much from me. I fooled those doctors then, and I do so now. Despite the fact that I’m on eight different medications a day, I don’t feel like a walking pharmacy. I have a good job; I’m in college to finish my BA in English Literature. I’ve written a poetry book and had it published. I’m writing a novel. I write a monthly disability awareness column for my local newspaper. I even get some of my articles featured in newspapers and e-magazines throughout the country. I’ve had three healthy and happy children who are now young adults without any physical or psychological problems. I’ve left an abusive marriage and entered a loving one. I moved clear across the country to a warmer climate to prolong my life. I’ve done many things that the doctors in 1958 couldn’t fathom. But I’m not a superhero. Far from it. I’m an ordinary person who is a wheelchair user. 

But to the medical world, I’m a nightmare. When I become ill, I don’t present my symptoms like an able-bodied person would. If I have pain in my stomach, I could be reacting to a skin ulcer on my hip. If I have a bladder infection, my left arm will have searing pain. Its no wonder so many disabled people are misdiagnosed when they become ill. The doctors who are unfamiliar with the quirky workings of a disabled body don’t know where to start. In fear they prescribe drugs that mask the real problem and send us home. But we always come back, usually through the emergency room, in worse shape than before. It may take several of these emergency room crisis’s to spurn an astute doctor into looking at us as someone who needs help, not just write a prescription and give a pat on the head.

 There are many doctors that specialize in “disabled” medicine. Yet they still are baffled when we get sick. When the human body loses a function or sensation, it will try to manifest the message that tells a physician something is wrong in an unusual way. These murky symptoms are just as foreign to us as they are to them. But we rely on the medical field to help us to sort through them to find out just what part of the body is acting up. Not all doctors are patient enough to run tests that they normally wouldn’t to find the answers. The few that do have a long patient list, with hundreds more waiting to be seen. Those waiting might not have much time, but they have no choice.

 Modern medicine in the field of disability has made many strides in treatment and preventative care. But those achievements are mainly focused on the young and newly disabled. The older generation of disabled have little history of success, but long lists of treatments that have shaped how their bodies respond to illness.

 For example, I had lumbar spinal tumors when I was fifteen years old, back in 1975. At that time the doctors I had were the best in neurology in Michigan. They were convinced the tumors were “suspicious”, but not cancerous. Nonetheless, I was prescribed a regimen of high-dosage radiation that was usually reserved for the most severe of cancers. The doctors told me I might have some residual effects to my reproductive and gastro-intestinal organs, but they couldn’t be sure. I was given a wheelchair, some antibiotics, a mild pain reliever, and a pat on the head. There wasn’t an internet back then, so I read medical books. I didn’t find much about the effects of radiation on the human body unless you had an atomic bomb dropped on you. In my 28 years after closing the door to the rehab unit, I have endured many illnesses that were both common and uncommon.

 Skin ulcers were a constant enemy from 1975 to 1987, requiring eight surgeries and serious bone and tissue infections before and after reconstructive surgery. Then a wheelchair cushion was developed that was 98% effective in prevention and recovery of skin ulcers. I begged my insurance for coverage if the $450 item, and finally was awarded one. I haven’t had an ulcer since.

 I’ve had kidney and bladder stones, and many infections. I’ve had hundreds of radioactive isotopes pumped into my veins to diagnose my problems. Not a word was said of the possible side effects in the near, or distant future. Then it was discovered that drinking cranberry juice instead of soda pop would prevent stones and infections. I haven’t had any urinary problems in ten years.

 Now comes middle age. If you think I’m being silly about being middle-aged at 43, I’m not. There aren’t too many disabled people who live a long life. Wheelchair users who have been disabled for more than twenty years are unique. Our bodies are war-ravaged, and old age is suddenly right now. Pain is at the center of our lives. But finding out where the pain is, why the pain exists, and what it is linked to is a mystery to be solved at great lengths.

 A dear friend of mine who has been wheelchair disabled for 23 years has been suffering from severe lower back and chest pain for weeks. She was short of breath, could not swallow anything larger than a pea, and was running a fever. She was finally diagnosed with an esophageal ulcer that was life threatening. Her pain was not from swallowing. In fact, her pain was most severe in her lower back. She had several bouts of high-dosage radiation for Hodgkin’s disease back in 1979. No one knew of the long-term effects. But they are beginning to now. Her body is showing the effects in the most abominable ways. Her recovery for the corrective surgery to her esophagus will be months. And none of the physicians know what will happen next.

 Fear of being sued is one reason why most physicians avoid treating us. But I’ve found that is it simply a lack of knowledge that stops their desire to diagnose us. They should not be afraid of us. They will miss one of the best learning experiences of their lives. As I follow my friend’s treatment, I have to keep a close eye. I too will suffer from my “radiation days”. I already have problems that require daily medication and a careful eye on my stress levels and diet. But no matter what I do, the effects of high-dosage radiation cannot be stopped.

 Obviously there needs to be more documented studies about the long-term effects of high-dosage radiation treatment for cancer and other diseases. But for now, it behooves the physicians and nursing staff to take seriously any disabled patient who complains of pain, but doesn’t know why. Aggressive diagnostic skills are crucial to the lives of the disability community as political correctness and insurance companies are building bigger barriers to new forms of treatment.

 As I have watched my dearest friend suffer unconscionable behavior by her primary physician and the staff of two top hospitals, I can’t help but feel that I’ve gone back in time. Then I realized that she and I, and others like us, are the first to live as long as we did after being exposed to massive amounts of radiation. We are the guinea pigs again, just like we were back in the 70’s. But we’re not young and full of hope as we were then. We’re tired, worn-out, and scared. But we press on. Why stop now?