Doctor’s decision helped spare me shame

When I was 9, I had polio. The summer of 1962 was at the tail end of the terrifying epidemic that had been sweeping the country every summer for the previous 30 or so years. I was too young to have noticed many of the horrors of those days. I do recall seeing both kids and adults wearing braces, but I didn’t really understand.

In those days, our family doctor was our family friend. He missed church right along with my parents the morning he delivered me. And 9 1/2 years later he had me admitted to that same hospital after a short appraisal of my symptoms. He knew exactly what I had, even before the spinal tap was performed.

I was placed in isolation, and not even my parents could be with me. The stay was frightening but short. I was one of the fortunate. I did not have the crippling form of the disease, what was then called paralytic polio. After a few weeks, I was back to normal.

I don’t recall anything about how I felt while in the hospital, except scared. But it wasn’t out of fear of the disease, because I never knew that summer what I had. Neither did my parents. It wasn’t until six years later, after my doctor had retired and my new doctor noticed my scoliosis – the curvature to my spine – that we found out. The new doctor, newly out of school, got my old records and nonchalantly informed my mother and me that I had had polio the summer of 1962.

These days it would be unthinkable for a doctor to keep a diagnosis like that to himself. In those days, though, doctors were lords, and “patients’ rights” was a phrase never considered. Doctors did and told what they thought best.

I had wondered at times – although the times I had even thought about polio were very few – why he never told us. Then, in the past few years, with an increased awareness of the history of polio, as the 50th anniversary of the development of the polio vaccine was approaching, I first came to realize the horror of paralytic polio. The horror that was permanent and debilitating lameness had always been obvious. The horror that was life in an iron lung was obvious.

In reading the stories of polio survivors from 50 or more years ago, however, I first realized the horror that was the path to recovery from that form of the disease. Children were taken from their families and put in polio wards full of other similarly afflicted children. Children were physically abused in attempts to force them to use painful and disfigured limbs. Children were sexually abused in environments without protection from the predators that have always been out there.

Treatment regimens were tried and they failed, but with time most survivors got better. The children went home to parents who had been stigmatized by having the disease in the family. The children went home and were stigmatized by their deformities, by their awkwardness, by their crutches, their braces and their wheelchairs. For those who survived, it was to a life never to be the same again. It was to a life shaped by the horrors of that struggle to survive.

My family doctor understood all about that stigma. I recall his white coat. I recall his kind face and his soft, caring voice. I don’t ever recall being afraid of him or his office. And I vividly recall the brace that he wore on his right leg – the stiffness of his gait, the clump-clump of his step. He was a polio survivor.

He is long dead. We could long debate the ethics of his withholding that diagnosis from my parents 44 years ago. Now, with the medical awareness of the long-term after-effects of polio on polio survivors, post-polio syndrome, or post-polio sequelae, depending on how nomenclaturally accurate you wish to be, it has become important to me to know that I once had the disease. But back then, those consequences were unknown.

Why did my doctor keep that truth from my family and me? Aside from the scoliosis and minor back problems, it made no difference for 40 years. As I said, I never gave my polio a second thought except when filling out a medical history form and having to check the box for polio.

I was one of the fortunate. I never had to go through the horror of the physical and mental recovery from paralytic polio. And thanks to my doctor’s compassion and his no doubt difficult choice, I also did not grow up with the stigma that was attached to those who had suffered the viral infection that was polio. By the time I was aware of the truth, polio, the terrifying epidemic, the crippling and stigmatizing disease, was all but forgotten.

My doctor was a fine and compassionate man. I will be forever grateful to him for all the many things he did for me in the numerous childhood illnesses of that day, but I will especially remember him for sparing us the ordeal of living in the aftermath of being infected with that feared and dreaded condition.