Yet the fact that the patients were complex human beings with a rich life beyond the hospital never really sank into the consciousness of the residents. Because they had no rich lives beyond the hospital, they assumed no one else did, either. In the end, what they lacked was not medical knowledge but ordinary life experience.
Nor did the attitude of practicing physicians encourage me. I liked them much better as people; they often had a breadth of interest missing from the current crop of students. But, all too often, the senior physicians were dissatisfied with their work. Even if they loved medicine—and most did—they came to dislike the life style. In those days, when group practices were less common and doctors had a more direct one-to-one relationship with their patients, clinical practice was enervating in a way that seemed to catch up with physicians after a decade or two. These men had families they hardly knew, boats they had hardly sailed, and trips they had many times canceled. It seemed their patients took everything in their lives. And not enough came back.
I had assumed the life of a doctor was, without doubt, devoted to helping people, but practicing physicians weren’t so sure. They saw many patients who apparently had nothing wrong with them. They saw terminal illnesses, which they could not cure. Again and again, they would say, “I’m not so sure I really help people.”
At first I chalked it up to temporary fatigue, or to fashionable self-doubt. Eventually I began to believe it. They were serious. And a lot of them felt that way.
* * *
Of course, I wanted to quit to become something else. I wanted to be a writer.
This had been my earliest life ambition. It went back almost to the beginning of my ability to read and write at all. When I was nine, my third-grade class was told to write a puppet show. Most of the students wrote brief skits; I wrote a nine-page epic involving so many characters that I had to get my father to retype it for me with multiple carbon copies before it could be performed. My father said he’d never read anything so cliché-ridden in his life (which probably was true); this hurt me and confirmed a pattern of conflict between us that persisted for many years. But my father unquestionably influenced my interest in writing; he was a born storyteller; at bedtime we insisted he tell us stories, which he would illustrate on the spot with little comic-strip drawings until we slowly drifted off to sleep.
When I was growing up, my father was a journalist and an editor; at the dinner table there was always talk about writing, and correct word use, with frequent pauses to consult Fowler’s Modern English Usage when arguments arose. Many of his editorial dicta stayed with me. (“Be careful about ‘obviously.’ If it’s really obvious you don’t need to say it, and if it’s not obvious it’s insulting to say that it is.”)
My father insisted on clarity and brevity, and he could be a harsh critic. But he was also full of good humor in those days. Journalists hear more jokes than anyone else, and each night he would come home with a new one, often risqué; my mother would say, “Now, John,” as he told it, to the glee of the children.
My father considered the ability to type a necessary life skill, and all his children learned at an early age; I learned to type when I was twelve. And it is surely no accident that of his four children, three have published books, and the fourth is working on one.
In any case, I wrote extensively from an early age. It was something I liked to do. I began submitting short stories to magazines when I was thirteen, and I sold a travel article to The New York Times when I was fourteen. What happened was that, on a summer trip, my family visited Sunset Crater National Monument, in Arizona. I found this place fascinating, but there was nobody else around that day, and I suspected most tourists bypassed it, not realizing how interesting it really was.
“Why don’t you write about it?” my mother said.
“For what?”
“The New York Times publishes travel articles from different people.” My mother was a great clipper of articles.
“The New York Times,” I said. “I’m just a kid.”
“Nobody needs to know that.”
I looked at my father.
“Get all the published information they have at the ranger station,” he said, “and interview the ranger.”
So my family waited in the hot sun while I interviewed the ranger, trying to think of things to ask him. But I was emboldened by the fact that my parents seemed to think I could do this, even though I was only thirteen.
Back in the car, driving to the next place, my father said, “How many visitors do they have every year?”
“I didn’t ask that,” I said.
“Is it open all year round?”
“I didn’t ask that, either.”
“What was the ranger’s name?”
“I didn’t ask.”
“Jesus,” my father said. “What published information did you get?”
I showed him the pamphlets and brochures.
“Well, that’ll be enough. You can write the story from that.”
When I got home, I wrote an article and sent it in. And the Times bought it and ran it. I was ecstatic. I was a published writer! Years later I discovered that the travel editor, Paul Friedlander, lived near us and his daughter Becky was in my class at school, so he probably knew a kid had written this article, and he was probably amused to publish it. But at the time I thought I had sneaked past the system, and had done a grown-up thing, and it gave me tremendous encouragement to continue writing. After all, I had been paid sixty dollars, which in those days was a lot of money for a kid.
I began doing other journalistic writing. I covered high-school sports for the town paper; I was both reporter and photographer, and was paid ten dollars a week. And in college I wrote for the Harvard Crimson, where I was book-review editor (free books) and sometime movie reviewer (free theater passes). And I covered sports for the Alumni Bulletin, which paid about a hundred dollars a month.
So, with this history of writing, it was natural for me to think of writing to pay for the cost of medical school. My father had three other children in college at the time, and he couldn’t pay the cost of school. I had to make money in some way.
Clearly I couldn’t make enough writing free-lance articles, so I decided to write novels. In those days James Bond spy novels were popular, and I read a lot of them. I decided to write novels like that.
By then I was married, and my father-in-law knew somebody at Doubleday. He sent Doubleday my first novel. Doubleday said that they wouldn’t publish it but Signet might. Signet bought it as an original paperback and called to ask who my agent was, to negotiate the deal.
I didn’t have an agent, but my father-in-law arranged for me to meet some. I met three. The first agent represented many famous authors and intimidated me. The second told me how I should write and annoyed me. The third was a young girl who had been an agent’s secretary and was just starting out on her own. She said she wanted to represent me. Since she was the only one who had said she wanted to represent me, it seemed like I should sign with her, so I did.
For the next three years, while I went to medical school, I wrote paperback thrillers to pay my bills. Of course, there wasn’t much time for writing, but I did it on weekends and vacations. And, with practice, I learned to write these spy thrillers quickly. Eventually I wrote one in nine days. But I didn’t take any particular interest in this work. It was just a way to pay the tuition bills.
Then, slowly, almost imperceptibly, the writing became more interesting to me than the medicine. And as my writing got more successful, the conflict between writing and medicine became increasingly awkward.
Under a pseudonym I wrote a book called A Case of Need. It had many lightly disguised references to people in the Harvard Medical School. When the book was published, there was a lot of talk about this author, Jeffery Hudson, who seemed to know so much about Harvard. I joined right in: Who could this Hudson fellow be, anyway? What a mystery.
That was fun. Then the book was nominated for an Edgar for
the Best Mystery of the Year. That was fun, too. Then the book won, which meant somebody had to accept the award.
Suddenly it was not fun any more.
I knew that if anybody found out I had written that book I would be in a lot of trouble. At Harvard, in your clinical years, you were given grades according to the informal opinion of the people you worked with. If these people found out I was writing books, my grades would fall precipitously.
I went to New York and accepted the award with dread. But I needn’t have worried. There wasn’t much publicity, and I was protected by the prejudices of the physician-scientists, who regarded literary matters as a waste of time. Nobody ever knew.
But then this same troublesome book was bought for the movies, and the movie company wanted me to fly to Hollywood to talk to the screenwriter. I said I couldn’t come, I was in medical school. They said, Come for the weekend. They were very insistent. I had to go to the chief of service to get Friday off. Dr. Gardner was a very nice man. I asked if I could take off Friday.
“Is there a death in the family?” he asked.
That was the usual excuse we used. By the third year, each of us had had our grandparents die three or four times.
“No,” I said.
“An illness?” he said.
“No,” I said.
And I gulped and told him the truth: that I had written this book, and it had been bought for the movies, and now the people in Hollywood wanted me to come out and talk to the screenwriter, and so I needed Friday off to do that, but don’t worry, I’ll be back on Monday for sure.
He looked at me strangely. What a lunatic excuse! Why didn’t I just say my grandmother had died like everybody else?
But all he said was, All right.
So I went to Hollywood, and I rode around in limousines and had dinner with famous people, and then I came back and went to the hospital again. There was a discontinuity in my life, a gap between the parts, and as time passed it grew wider.
I made the decision to quit in the summer of my third year. At that time, medical students apply for an internship. I didn’t apply, which meant I’d be dropping out after graduation.
A few weeks after I decided not to continue, I developed numbness in my right hand. Over several days, the numbness extended up my arm to the shoulder. I thought perhaps I’d slept on my arm and had compressed the nerves a little. The numb sensation was mild, and I ignored it.
I had every reason to ignore it. During all the clinical rotations I had developed convincing symptoms of every disease I had studied.
In dermatology, I was sure my moles were growing; I went home each night and used a hand mirror to check my back, where I was convinced melanomas were popping out like beads of sweat.
During surgery, I developed bloody stools, symptomatic of a hemorrhagic ulcer, a true surgical emergency—although one of the residents said disdainfully that I had just developed hemorrhoids, and welcome to the club.
During genitourinary, I developed pain on urination and would spin down my urine in the lab each day, looking for micro-organisms that I felt sure were there, although I could never find them.
In each instance, the day the clinical rotation ended, the symptoms mysteriously vanished—only to be replaced by new symptoms, which developed as I began my new rotation. So, no matter how persuasive these new symptoms seemed to me, I had learned, after a year, not to panic. I certainly wasn’t going to panic now over something as peculiar as numbness in my right arm. I chose to avoid thinking about it; I refused even to look up the symptoms in my textbooks.
Then, one day in the cafeteria lunch line, I reached into my pocket for change and realized I could not distinguish the coins I was feeling in my pocket. I had to bring the coins out and look at them in my palm to see which was which. I knew what this was called: asterognosis.
I knew it was definitely abnormal.
Still I ignored my symptoms. Nothing further happened for two weeks, but the numbness did not go away, either. One day I asked a classmate who was a superb diagnostician, “What can give you numbness in your right arm?”
He thought about it for a while, shook his head. “The only things I can think of are spinal-cord tumor and multiple sclerosis.”
I thought, What does he know, he’s only a medical student. I still did nothing. I expected the symptoms to go away. They didn’t. I worried more and more about my arm, until finally I looked up the symptoms of spinal-cord tumor and multiple sclerosis.
It was immediately clear that spinal-cord tumor was highly unlikely. If I had anything wrong with me, it would seem I had multiple sclerosis.
Multiple sclerosis was a progressive degenerative disease of the nervous system, which tended to afflict young people. It was an autoimmune disease, in which the body’s defenses became confused and attacked its own nerve fibers as if they were foreign intruders. The progress of the disease was highly variable. There was no known cause, no effective treatment, and no cure.
According to my reading, MS could first appear in almost any way. The fact that I had numbness without pain in only one extremity, with no prior history of injury, was highly suspicious. But it was impossible to make a diagnosis of MS based on a single set of symptoms. You needed to see a pattern of neurological attack and remission, over time, to confirm a diagnosis.
I stopped reading. I went on to my next rotation, and hoped the symptoms would disappear. They did not. My arm remained numb. By now it had been almost two months.
One day in October, while bending over a patient’s bed, I noticed shooting electrical tingles going down both legs. From the reading I had already done, I knew what this was: Lhermitte’s sign. Technically, paresthesias on flexion of the neck.
Lhermitte’s sign was pathognomonic of multiple sclerosis. I had the disease.
I did more reading—a lot more reading. For a man of twenty-six, the news was not encouraging. Multiple sclerosis was highly variable, but, according to the statistics, I could expect substantial impairment within five years; serious handicaps that interfered with a job within ten years; very severe limitations including loss of bladder and bowel control within fifteen years; and death within twenty years.
I was horrified. The thought of becoming bedridden and incontinent, of undergoing the subtle loss of mental functioning, filled me with dread. But I reminded myself I still had not been examined by a doctor; no objective diagnosis had been made.
Finally I couldn’t keep my worries to myself. The internist at the Health Services listened to my story, did an examination, then named a neurologist he wanted me to see. I said I would call.
“No,” he said. “I’ll call. Maybe he can see you right away.”
The neurologist saw me that day. He was young and brisk. I sweated profusely while he examined me. When he finished, he said I could get dressed and come into his office.
I dressed and went to the office.
“Well,” he said briskly, “you have had a demyelinative episode.”
“Does that mean I have it or not?” I asked. I couldn’t bring myself to say the words.
“You mean, do you have multiple sclerosis?”
“Uh-huh,” I said.
“Well,” he said, “you have had a single attack, yes.”
I felt as if a great powerful wave washed over me, knocked me down, spun me around in boiling surf. I felt as if I were drowning in this man’s office, sitting in a chair facing his desk.
The neurologist started speaking very quickly. “But let me tell you how to think about this,” he said. “I assume you have been reading up on it?”
“Yes.”
“Well, the books are wrong. Listen to me, and forget the books.”
Sure, I thought. Try and cheer me up.
“The books are based on old and inadequate data. I’ll tell you how to look at this disease—or, really, this syndrome, because it’s more a syndrome than a disease.”
He spoke fast and loud, realizing that my attention was wandering, that I
was withdrawing into myself in panic. He said that a large percentage of people had a single episode like mine sometime during their lives. Most people would never consult a doctor about it, and so doctors had no idea how common a single episode might be. But he thought they were very common, perhaps occurring in as much as ninety percent of people. He told me that several of my classmates had had such single episodes. Only one had had subsequent episodes.
So the question in my case was whether I would have no further attacks at all, or whether I would have occasional attacks and experience some loss of function, or whether I would have frequent and severe attacks and serious difficulty in my life.
“Think of this as a heart murmur,” he said. “It’s a warning of a possible problem, but you can’t say now whether a heart murmur will remain asymptomatic all your life, whether it will give you some trouble, or whether you’ll die of it. You’ll simply have to wait and see.”
“How long do I have to wait to find out what sort of case I have?” I said.
“Two to five years,” he said. “If you have no further attacks for two years, I think you can relax. And if you have no symptoms for five years, I think you can forget about it completely.”
He then discussed what I could do in the meantime. The answer was, basically, nothing. Multiple sclerosis was a disease of unknown cause. There were some helpful treatments during acute episodes, but no cures. Since there wasn’t anything to do, he said I should take care of my general health and avoid stress and mental upset, but otherwise try not to think about it.
This neurologist was so straightforward, so matter-of-fact, that I was able to leave his office and go back to the wards to work. Despite the bad news, I was okay.
Two days later the internist called me in. He said he had gotten the report from the neurologist. He asked me how I felt. I abruptly started to cry. I was embarrassed to be crying in this man’s office, but I couldn’t help myself. The internist said he wanted a second opinion and sent me to Dr. Derek Denny-Brown, who was the most famous neurologist at Harvard at that time. I had had lectures from Dr. Denny-Brown. I was not happy to be seeing him now as a patient.