This is a reposting from I blog I wrote several years ago on Multiply.Com. Several people who have read yesterday’s posting asked me about my unusual medical history. So I hope you don’t mind an occasional repeat. A few changes have been made to reflect the present reality:
The story of my life would be incomplete without a description of the physical pain that wracked me from approximately the age of ten until just five years ago. It all started with the headaches: They were centered at a spot about an inch or so above the imaginary line between my eyes. And they were incredibly severe. Fortunately, I did not have them every day. At first, it was only two or three times a week.
What does one know about pain when one is young? I knew that the headaches were bad, but was afraid of making them out worse than they were. My parents took me to doctors, but they thought I had migraines or hay fever or that I was just basically shamming. My mother would boil a large pot of water, add salt, and have me bend over it with a towel over my head so that the vapor would relieve the pain. Sometimes it seemed to work.
Time went on: I graduated from high school and went on to college, where it got worse. In the summer after I graduated, I saw the best ophthalmologist in Cleveland because of some surprising lateral visual disturbances I was beginning to have. When I saw a stop sign, sometimes it looked as if it were saying stp; other times, it looked like stoooooop. This doctor said I had a “lazy eye” and prescribed eye exercises. (No one who reads has much as I do can be said to have a “lazy eye.”)
Days before I was to leave by train to Los Angeles to begin graduate school at UCLA, it all came to a head, so to speak. I had just prepared a lunch for myself (my parents work at work) of a hot dog with catsup and a can of creamed corn. (For years after, I was unable to eat any of these foods; and I still can’t face catsup.) Suddenly, all the demons in hell were inside my head jabbing with pitchforks. I collapsed in bed, and then it got worse. Over a period of an hour, I managed to drag myself to a telephone—blacking out several times in the process—and, after several wrong numbers, got my mother at work. She heard the panic in my voice, but I didn’t care because I had collapsed.
The next thing I remember, I was in the emergency ward at Fairview General Hospital in Fairview Park, Ohio [now part of the prestigious Cleveland Clinic] . A doctor was asking me questions, but I was too groggy to give articulate answers. Another blackout. Then, a coma. My temperature shot up dangerously high, and my body was cooled by bags of ice . In 1966, there were no CAT scans, no MRIs—only X-Rays. No one had a clue what was wrong with me, and my family was prepared for the worst. I received the last sacraments of the Catholic Church when—quite suddenly and inexplicably—I awoke.
At times in my life, I have had incredible luck. One of the most incredible strokes of luck was that my family physician was an endocrinologist, Doctor Michael Eymontt. While I was out, he had deduced from sketchy evidence that I had a chromophobe adenoma, or pituitary tumor. It made sense: I was 21 years old, but looked as if I were only 11. I had practically no body hair and had not yet reached the age of puberty. The doctors told me I had a cyst in my pituitary which had to be operated on within a few days. If they had said tumor, which would have been the truth, my family would have been more alarmed. One day, the neurosurgeon, Dr. William Hegarty, walked into my room, introduced himself, and said, “Tomorrow, we’ll be peeking into your pituitary.”
They did more than peek. The pituitary gland is located midway between the ears, ensconced on all sides by brain, except from the bottom. In those primitive days of the 1960s, they had to go through my brain. The chances of death, paralysis, blindness, and a whole host of evils stood near 100%. Nowadays, this surgery is fairly routine. The surgeons go up from the roof of the mouth, or even through the nasal cavity. But in that era, it was tantamount to a death warrant.
Three hours after the surgery, as I lay in bed in the intensive care unit with my mother and father standing by my side, I suddenly sat up with all the tubes tied to me and said, “The operation was a success. Could I have some bacon?” It had been a success. Little by little, the doctors and nurses imparted to me the medications I must now take for the rest of my life, the dangers I had been through, and the possible dangers to come. But I had survived. When, eighteen days later, my father drove me home, I marveled at the people walking down the street and thought, “O brave new world!” All of creation was suffused with a glow, even the run-down brick homes of West Side Cleveland looked to me like gleaming palaces.
The feeling was not to last. It turns out that I was allergic to dilantin, an anticonvulsive drug that I was taking that attacked all my joints simultaneously and made it impossible for me to move without screaming in pain. They switched me to phenobarbitol instead, and the pain finally went away.
I was alive! [And still am!]