There is a scene in the 1976 movie Marathon Man in which the villain (played by Sir Laurence Olivier), a Nazi war criminal, is recognized on a city street by a passerby, a former prisoner in the extermination camp over which Olivier’s character presided. The passerby goes into a state of catatonic terror, able to do nothing but point at him, inarticulately trying to indicate that there is something wrong with this outwardly normal-looking man.
To my utter surprise, I experienced something like this when I read in the HEA announcement of the phone-in discussion last autumn that one of the participating experts was a doctor from a hospital in Toronto. I say that I was surprised because as an adult I have been in this hospital twice, once when my middle child had a very bad case of mumps and a second time when my youngest needed a cut tendon in a finger repaired. But, it appears, the combination of three ideas was after 60 years still a potent trigger. The three ideas were: 1) epispadias, 2) doctor, and 3) that hospital. I know from my adult experiences of the hospital that it is a very different place now—it’s even in a different location now—and that changes have been made to make children’s experiences less terrifying and traumatic than they were for me so many years ago. The strength and total irrationality of my reaction were indications of how difficult my experiences there were.
As bad as the lack of bladder control and the fear of being seen and ridiculed for being different were, the childhood experiences of hospitalization and surgery were probably even worse. I was placed in the care of the hospital in 1948 at the age of 1½ years and 1949 or 1950 at the age of 3. In a way, the worst part of the nightmare was the loneliness, the sense of abandonment. I’m sure my parents came to see me during visiting hours, but what I still remember vividly was being alone for what seemed like interminably long periods of time, seeing darkness descend on the world from which I felt banished, and sitting on a bed in my little cotton gown, waiting, waiting, waiting….I didn’t know what I was waiting for or what to expect. At some point, of course, I was put on a gurney and taken to the operating room. Even that trip had its memorable moments, especially that moment on the elevator when the door opposite the one from which we had entered opened and I was wheeled out. How could an adult for whom elevators are a regular part of everyday life have appreciated how terrifying this experience would be for a small child? It somehow seemed a metaphor for death, this exit from the “other” side, this arrival at a point of no return. Then, of course, no one can imagine how terrifying an operating room is for a young child, although that particular terror was more a feature of later hospitalizations. But what was particularly traumatic about these two early experiences of surgery at the hospital was the anesthetic. It was in the form of a gas administered by placing a mask over my nose and mouth. When I inhaled the anesthetic, I experienced a terrible pounding that accelerated and got louder as it continued. I think I thrashed about, trying to get away from this absolutely horrible and terrifying experience. I cannot express the terror with which it filled me; the nearest I can get is to speculate that I really felt that this strange, ominous, and overwhelming pounding sensation was the precursor of death. Well into my childhood—until, as I recall, about the age of 12—I would frequently have nightmares that were this same accelerating pounding, uncontrollably getting stronger and stronger. Eventually I remembered the source of the experience and never had this nightmare again.
However, what is most strange about these two surgeries, performed by a Dr. F, was what they accomplished. Skin from the scrotum was pulled over the top of the penis to close the gap between the two halves. A urethra was “built” using hair-bearing skin (as I found out in adolescence) and emptied from an opening on the underside of the penis. I am, therefore, probably one of not many people afflicted with both epispadias and hypospadias. I suppose the thinking was that hypospadias is better than epispadias and so represented an improvement. The glans remained split apart, and the lack of bladder control was not addressed.
After the second surgery my parents began to question what was being done by Dr. F and took me to a pediatrician, a Dr. R, in Ottawa, where we were living at the time. My mother told me that Dr. R was appalled by what he saw and referred me to a urologist, Dr. B, in Ottawa. His assessment of the situation that I was at risk of uremia and needed surgery to alleviate the consequences of the previous two surgeries. I vividly remember them asking how long the hospitalization would be. He said two weeks, but somehow in my child’s mind I heard two days—wishful thinking, perhaps. The thing is, I really believed it would be only two days, so when two days became three and then four and so on, despair set in. The inscription in Dante’s Inferno over the entrance to the gates of Hell, “Abandon hope all you who enter here,” resonates particularly meaningfully for me, because that was my childish experience.
I don’t know exactly what was done to me in this surgery. Whatever was done, however, evidently removed the danger, as uremia has never been a problem.
I guess this is as good a point as any in my tale to mention that feature which was particularly nasty for a young child—penicillin administered by injection into a buttock. How I feared this painful and humiliating ritual, which was experienced as a kind of violation or defilement. The ritual would begin as the wheeled table carrying the instruments for administering the drug came into earshot. It rattled, or tinkled, as if there were many little glass jars or vials jostling against each other as they moved. There would be the screams of the young patients as they welcomed the infection-fighting substance into their bloodstreams. My fearful anticipation increased as the sounds got closer, and then it would be my turn to endure the painful invasion of my flesh.
One memory that has stuck in my mind was a moment after the visit to Dr. B when I learned about the next surgery. I must have been 3 going on 4, as this surgery took place around my fourth birthday. I was standing in my bedroom, looking through the window at the Rideau Canal and the railway tracks leading into the train station. The questions that came into my mind were, “Why me? Why do I have to go through this? Why couldn’t it have been someone else?” And then I thought that if it were someone else, that person would be asking the same questions, and everything would be the same, except it would be someone else, so how would we be any further ahead? It was a strangely philosophical reflection for one so young, and one I am unlikely to have had without these experiences.
I had two additional surgeries. One, when I was 10, gave me something approximating normal bladder control and also enabled me to urinate in a standing position. The other, when I was 17, made my penis look more normal, including moving the opening of the urethra to the usual location. These were accompanied by moments of extreme physical pain but were psychologically less traumatic. One thing that helped was that the anesthetist, knowing about my reaction to gaseous anesthetic, began the anesthesia with sodium pentothal. I do think, however, that the anesthesia administered when I was 17 left me less intellectually capable. School just seemed more difficult after that. Maybe it’s my imagination, but that’s how it seemed.
There can be no doubt that epispadias has cast a long dark shadow over my life, but one which has not prevented me from engaging in a normal life, working as a teacher, writer, publisher, and musician, getting married, and having three children. I can only hope that in the course of my life that I will have succeeded in paying whatever debt to the universe needed to be paid.