A Life in Medicine Page 12

  I followed him for years.

  Alan was ten years my senior. In my mind, growing up, he was mythic. Everything I was taught not to do, Alan did. We were taught to be polite, to not express displeasure or anger in public. Alan was sheer, physical expression. Whatever was on his mind was vocalized and usually punctuated with colorful speech. We would go bowling as a family on Sundays. Each of us would take our turn, hold the black ball to our chest, take a few steps, swing our arm back, forward, glide, and release—the ball would roll down the alley, hit a few pins, we would wait for the ball to return, and then take our second run. Little emotion was shown. When it was Alan’s turn, it was an event. Nothing subtle. His style was Herculean. Big man. Big ball. Big roll. Big bang. Whether it was a strike or a gutter, he clapped his hands, spun around in the floor, slapped his thighs and cried, “God-damn! Did you see that one? Send me another ball, sweet Jesus!” And the ball was always returned.

  I could always count on my uncle for a straight answer. He was my mentor in understanding that one of the remarkable aspects of being human was to hold opposing views in our mind at once.

  “How are you doing?” I would ask.

  “Ask me how I am feeling?” he answered.

  “Okay, how are you feeling?”

  “Today? Right now?”

  “Yes.”

  “I am very happy and very sad.”

  “How can you be both at the same time?” I asked in all seriousness, a girl of nine or ten.

  “Because both require each other’s company. They live in the same house. Didn’t you know?”

  We would laugh and then go on to another topic. Talking to my uncle was always like entering a maze of riddles. Ask a question. Answer with a question and see where it leads you.

  My younger brother Steve and I spent a lot of time with Alan. He offered us shelter from the conventionality of a Mormon family. At our home during Christmas, he would direct us in his own nativity plays. “More—” he would say to us, making wide gestures with his hands. “Give me more of yourself.” He was not like anyone we knew. In a culture where we were taught socially to be seen not heard, Alan was our mirror. We could be different too. His unquestioning belief in us as children, as human beings, was in startling contrast to the way we saw the public react to him. It hurt us. What we could never tell was if it hurt him.

  Each week, Steve and I would accompany our grandparents south to visit Alan. It was an hour’s drive to the training school from Salt Lake City, mostly through farmlands.

  We would enter the grounds, pull into the parking lot of the institution where a playground filled with huge papier-mâché storybook figures stood (a twenty-foot pied piper, a pumpkin carriage with Cinderella inside, the old woman who lived in a shoe), and nine out of ten times, Alan would be standing outside his dormitory waiting for us. We would get out of the car and he would run toward us, throwing his powerful arms around us. His hugs cracked my back and at times I had to fight for my breath. My grandfather would calm him down by simply saying, “We’re here, son. You can relax now.”

  Alan was a formidable man, now in his early twenties, stocky and strong. His head was large with a protruding forehead that bore many scars, a lineby-line history of seizures. He always had on someone else’s clothes—a tweed jacket too small, brown pants too big, a striped golf shirt that didn’t match. He showed us appearances didn’t matter, personality did. If you didn’t know him, he could look frightening. It was an unspoken rule in our family that the character of others was gauged in how they treated him. The only thing consistent about his attire was that he always wore a silver football helmet from Olympus High School where my grandfather was coach. It was a loving, practical solution to protect Alan when he fell. Quite simply, the helmet cradled his head and absorbed the shock of the seizures.

  “Part of the team,” my grandfather Sanky would say as he slapped him affectionately on the back. “You’re a Titan, son, and I love you—you’re a real player on our team.”

  The windows to the dormitory were dark, reflecting Mount Timpanogos to the east. It was hard to see inside, but I knew what the interior held. It looked like an abandoned gymnasium without bleachers, filled with hospital beds. The stained white walls and yellow-waxed floors offered no warmth to its residents. The stench was nauseating, sweat and urine trapped in the oppression of stale air. I recall the dirty sheets, the lack of privacy, and the almond-eyed children who never rose from their beds. And then I would turn around and face Alan’s cheerfulness, the open and loving manner in which he would introduce me to his friends, the pride he exhibited as he showed me around his home. I kept thinking, Doesn’t he see how bad this is, how poorly they are being treated? His words would return to me, “I am very happy and I am very sad.”

  For my brother and me, Alan was our guide, our elder. He was fearless. But neither one of us will ever be able to escape the image of Alan kissing his parents good-bye after an afternoon with family and slowly walking back to his dormitory. Before we drove away, he would turn toward us, take off his silver helmet, and wave. The look on his face haunts me still. Alan walked point for all of us.

  Alan liked to talk about God. Perhaps it was in these private conversations that our real friendship was forged.

  “I know Him,” he would say when all the adults were gone.

  “You do?” I asked.

  “I talk to Him every day.”

  “How so?”

  “I talk to Him in my prayers. I listen and then I hear His voice.”

  “What does He tell you?”

  “He tells me to be patient. He tells me to be kind. He tells me that He loves me.”

  In Mormon culture, children are baptized a member of the Church of Jesus Christ of Latter-Day Saints when they turn eight years old. Alan had never been baptized because my grandparents believed it should be his choice, not something simply taken for granted. When he turned twenty-two, he expressed a sincere desire to join the Church. A date was set immediately.

  The entire Dixon clan convened in the Lehi Chapel, a few miles north of the group home where Alan was now living. We were there to support and witness his conversion. As we walked toward the meetinghouse where this sacred rite was to be performed, Alan had a violent seizure. My grandfather and Uncle Don, Alan’s elder brother, dropped down with him, holding his head and body as every muscle thrashed on the pavement like a school of netted fish brought on deck. I didn’t want to look, but to walk away would have been worse. We stayed with him, all of us.

  “Talk to God,” I heard myself saying under my breath. “I love you, Alan.”

  “Can you hear me, darling?” It was my grandmother’s voice, her hand holding her son’s hand.

  By now, many of us were gathered on our knees around him, our trembling hands on his rigid body.

  And we, who have always thought

  Of happiness as rising, would feel

  The emotion that almost overwhelms us

  Whenever a happy thing falls.

  —Rainer Maria Rilke

  Alan opened his eyes. “I want to be baptized,” he said. The men helped him to his feet. The gash on his left temple was deep. Blood dripped down the side of his face. He would forgo stitches once again. My mother had her arm around my grandmother’s waist. Shaken, we all followed him inside.

  Alan’s father and brother ministered to him, stopped the bleeding and bandaged the pressure wound, then helped him change into the designated white garments for baptism. He entered the room with great dignity and sat on the front pew with a dozen or more eight-year-old children seated on either side. Row after row of family sat behind him.

  “Alan Romney Dixon.” His name was called by the presiding bishop. Alan rose from the pew and met his brother Don, also dressed in white, who took his hand and led him down the blue-tiled stairs into the baptismal font filled with water. They faced the congregation. Don raised his right arm to the square in the gesture of a holy oath as Alan placed his hands on his brother’s le
ft forearm. The sacred prayer was offered in the name of the Father, the Son, and the Holy Ghost, after which my uncle put his right hand behind Alan’s shoulder and gently lowered him into the water for a complete baptism by immersion.

  Alan emerged from the holy waters like an angel.

  The breaking away of childhood

  Left you intact. In a moment,

  You stood there, as if completed

  In a miracle, all at once.

  —Rainer Maria Rilke

  Six years later, I found myself sitting in a chair across from my uncle at the University Hospital, where he was being treated for a severe ear infection. I was eighteen. He was twenty-eight.

  “Alan,” I asked. “What is it really like to be inside your body?”

  He crossed his legs and placed both hands on the arms of the chair. His brown eyes were piercing.

  “I can’t tell you what it’s like except to say I feel pain for not being seen as the person I am.”

  A few days later, Alan died alone; unique; one and only; single; in American Fork, Utah.

  The Village Watchman sits on top of his totem with Wolf and Salmon—it is beginning to rain in the forest. I find it curious that this spot in southeast Alaska has brought me back into relations with my uncle, this man of solebirth who came into the world feet first. He reminds me of what it means to live and love with a broken heart; how nothing is sacred, how everything is sacred. He was a weather vane—a storm and a clearing at once.

  Shortly after his death, Alan appeared to me in a dream. We were standing in my grandmother’s kitchen. He was leaning against the white stove with his arms folded.

  “Look at me now, Terry,” he said smiling. “I’m normal—perfectly normal.” And then he laughed. We both laughed.

  He handed me his silver football helmet that was resting on the counter, kissed me, and opened the back door.

  “Do you recognize who I am?”

  On this day in Sitka, I remember.

  Bernard Pomerance

  from THE ELEPHANT MAN: A PLAY

  The Elephant Man is based on the life of Joseph “John” Merrick, who lived in London in the late nineteenth century. Suffering from an extreme case of neurofibromastosis, Merrick was born severely deformed, and people ran down the street screaming in horror and disgust at the sight of him. Merrick was rescued from circus freak shows and public humiliation by a physician named Frederick Treves. Treves discovered that Merrick was a highly intelligent, deeply sensitive, and refined man—one who became something of a celebrity among London society.

  The play explores the relationship between doctor and patient—in particular, the knowledge doctor and patient have of one another and how they “diagnose” one another in the course of medical treatment. In the first of two scenes reprinted here, Dr. Treves lectures a group of doctors about Merrick’s condition in painstaking detail. In the second scene, it is Merrick’s turn to lecture a group of “pinheads” about Dr. Treves’s condition as he sees it.

  BERNARD POMERANCE is an American playwright living in London. He is best known for The Elephant Man.

  SCENE III: WHO HAS SEEN THE LIKE OF THIS?

  TREVES lectures. MERRICK contorts himself to approximate projected slides of the real Merrick.

  TREVES: The most striking feature about him was his enormous head. Its circumference was about that of a man’s waist. From the brow there projected a huge bony mass like a loaf, while from the back of his head hung a bag of spongy fungous-looking skin, the surface of which was comparable to brown cauliflower. On the top of the skull were a few long lank hairs. The osseous growth on the forehead, at this stage about the size of a tangerine, almost occluded one eye. From the upper jaw there projected another mass of bone. It protruded from the mouth like a pink stump, turning the upper lip inside out, and making the mouth a wide slobbering aperture. The nose was merely a lump of flesh, only recognizable as a nose from its position. The deformities rendered the face utterly incapable of the expression of any emotion whatsoever. The back was horrible because from it hung, as far down as the middle of the thigh, huge sacklike masses of flesh covered by the same loathsome cauliflower stain. The right arm was of enormous size and shapeless. It suggested but was not elephantiasis, and was overgrown also with pendant masses of the same cauliflower-like skin. The right hand was large and clumsy—a fin or paddle rather than a hand. No distinction existed between the palm and back, the thumb was like a radish, the fingers like thick tuberous roots. As a limb it was useless. The other arm was remarkable by contrast. It was not only normal, but was moreover a delicately shaped limb covered with a fine skin and provided with a beautiful hand which any woman might have envied. From the chest hung a bag of the same repulsive flesh. It was like a dewlap suspended from the neck of a lizard. The lower limbs had the characters of the deformed arm. They were unwieldy, dropsical-looking, and grossly misshapen. There arose from the fungous skin growths a very sickening stench which was hard to tolerate. To add a further burden to his trouble, the wretched man when a boy developed hip disease which left him permanently lame, so that he could only walk with a stick. (To MERRICK) Please. (MERRICK walks.) He was thus denied all means of escape from his tormentors.

  VOICE: Mr. Treves, you have shown a profound and unknown disorder to us. You have said when he leaves here it is for his exhibition again. I do not think it ought to be permitted. It is a disgrace. It is a pity and a disgrace. It is an indecency in fact. It may be a danger in ways we do not know. Something ought to be done about it.

  TREVES: I am a doctor. What would you have me do?

  VOICE: Well, I know what to do. I know.

  Silence. A policeman enters as lights fade out.

  SCENE XVIII: WE ARE DEALING WITH AN EPIDEMIC

  TREVES asleep. MERRICK at lecturn.

  MERRICK: The most striking thing about him, note, is the terrifyingly normal head. This allowed him to lie down normally, and therefore to dream in the exclusive personal manner, without the weight of others’ dreams accumulating to break his neck. From the brow projected a normal vision of benevolent enlightenment, what we believe to be a kind of self-mesmerized state. The mouth, deformed by satisfaction at being the hub of the best of existent worlds, was rendered therefore utterly incapable of self-critical speech, thus of the ability to change. The heart showed signs of worry at this unchanging yet untenable state. The back was horribly stiff from being kept against a wall to face the discontent of a world ordered for his convenience. The surgeon’s hands were well-developed and strong, capable of the most delicate carvings-up, for others’ own good. Due also to the normal head, the right arm was of enormous power; but, so incapable of the distinction between the assertion of authority and the charitable act of giving, that it was often to be found disgustingly beating others—for their own good. The left arm was slighter and fairer, and may be seen in typical position, hand covering the genitals, which were treated as a sullen colony in constant need of restriction, governance, punishment. For their own good. To add a further burden to his trouble, the wretched man when a boy developed a disabling spiritual duality, therefore was unable to feel what others feel, nor reach harmony with them. Please. (TREVES shrugs.) He would thus be denied all means of escape from those he had tormented.

  PINS enter.

  FIRST PIN: Mr. Merrick. You have shown a profound and unknown disorder to us. You have said when he leaves here, it is for his prior life again. I do not think it ought to be permitted. It is a disgrace. It is a pity and a disgrace. It is an indecency in fact. It may be a danger in ways we do not know. Something ought to be done about it.

  MERRICK: We hope in twenty years we will understand enough to put an end to this affliction.

  FIRST PIN: Twenty years! Sir, that is unacceptable!

  MERRICK: Had we caught it early, it might have been different. But his condition has already spread both east and west. The truth is, I am afraid, we are dealing with an epidemic.

  Lewis Thomas

  LEECH,
LEECH, ET CETERA

  In this lively discussion of medicine and what it has meant to be a doctor during the course of history, Lewis Thomas begins with an exercise in comparative philology, an examination of the origins of words. Why, Thomas wonders, was the word “leech” used for a doctor and at the same time for the worm for many centuries? Or, as Thomas puts it, “Which came first, leech the doctor or leech the worm?”

  In posing and answering this question, Thomas models the importance of the practice of invigorating scientific knowledge as the basis for medicine.

  LEWIS THOMAS (1914–1994) a physician, teacher, and essayist, was probably best known for his writing on a variety of subjects. He was a former dean of New York University Medical School and president of the Memorial Sloan Kettering Cancer Center. Thomas’s first book, The Lives of a Cell, a collection of twenty-nine essays first written for the New England Journal of Medicine, won the National Book Award. His other books include The Medusa and the Snail and The Youngest Science, from which this essay was taken.

  A few years ago, I blundered into the fringes of a marvelous field of scholarship, comparative philology. I wondered—I forget the occasion—why leech was the word for the doctor and at the same time for the worm used by the doctor for so many centuries. Which came first, leech the doctor or leech the worm?

  The lovely American Heritage Dictionary has a fifty-page appendix of Indo-European roots, based in large part on Pokorny’s Dictionary of Indo-European Languages. My wife searched New York’s bookstores and found a copy of Pokorny in a rare-book store for my birthday, and I have never since looked back.

  The evolution of language can be compared to the biological evolution of species, depending on how far you are willing to stretch analogies. The first and deepest question is open and unanswerable in both cases: how did life start up at its very beginning? What was the very first human speech like?