M ark O’Brien spends virtually every moment of every day encased in an iron lung in a room eleven feet wide and twenty feet long and seven and a half feet high. A single window fronts an alley and gets little light. The air in the room has a damp weight and smells sour, like the laden air of a closed space in which people have slept. Certain sounds are constant: the graduated chant and metallic rattle of the iron lung’s small electric motor; the regulated hiss of its leather bellows; the crumpling of a nylon collar around Mark’s neck as air from the lung fills and leaves it; and the soft intermittent clatter in Mark’s mouth and nose and throat: sighs, gasps, wheezes, whistles.
The iron lung is a dull yellow steel cylinder, six feet long and three and a half feet wide. Mark’s head emerges from a small hole at one end. Rhythmic alterations in the cylinder’s air pressure force air into and out of Mark’s lungs every three seconds. On its side are three rectangular and two circular metal panels, bright as mirrors and covered with latches and bolts, and a piece of typing paper that reads:
This porthole may be opened should you feel the need to: A) tickle B) touch C) feel up D) all of the above the person residing within.
Mark’s head, cocked permanently to the right as if he were trying to look over his shoulder, lies on a pillow in a metal tray bolted to the iron lung. His head appears to rest heavily, its angle against the pillow forcing the loose skin of his right cheek upward so that it encroaches on his eye. As the collar around his neck fills with air, it covers much of his left cheek and approaches his left eye. Thus squeezed and lifted and disembodied, his face seems to float.
Mark’s face is round and full and pale and, though he is forty-six, very smooth. It is usually flushed and hot: gravity draws blood into it. Mark’s cheeks are thick and slack. His nose is large; its knobbed tip is cleft and slightly askew. Many fine wrinkles underline his light eyes, which are very round and very clear. When you enter or leave the room or after he makes a joke, Mark’s eyes brighten and search for yours. They are difficult to avoid. When Mark finds something funny he grins and raises his eyebrows and nods emphatically. He cannot laugh out loud: polio killed the nerves that operate his diaphragm.
When Mark speaks he sounds as if he were being choked: his voice is a thin, halting rasp. The mechanical rhythm of his breathing interferes with his speech. He talks in fragments, slurring his words. When he has talked too long veins rise on his temple. Sometimes, when he is intent on finishing a thought, he talks until he runs out of air and his voice collapses in a sigh.
Since 1979 Mark has lived on a residential street close to the campus of the University of California at Berkeley. Modest duplexes and square stucco apartment buildings alternate with occasional cinder-block flophouses. Graffiti and handwritten For Rent signs appear regularly. College students walk to class; homeless men loiter in alleys beside grocery carts filled with salvaged belongings. The street runs east toward one of the abrupt green hills that characterize Berkeley. Several miles to the west is San Francisco Bay.
Mark occupies a ground-floor unit of a three-story apartment building shaped like a shoebox. Its yellow stucco facade is minutely cracked and distinguished chiefly by a large No Trespassing sign, two rows of electric meters, and a grid of pipes. A dim alley leads from the street to Mark’s apartment. Limp cobwebs streak the stucco that frames his door.
Mark is a poet and journalist. He is almost always lonely. His mother died recently; his father and brother and sister visit several times a year. His friends come to him first as paid personal attendants, or journalists who want to depict his life, or editors to whom he has sent writing, or others who have heard of him and are curious or concerned. Invariably he accommodates the people who enter his life unannounced and unexpected. On twelve occasions, each time understanding the impossibility of reciprocation, he has fallen in love with one of his attendants.
Mark feels a great, abstract, undifferentiated anger. Fate angers him. The many daily inconveniences he endures anger him. He rarely expresses his anger and frequently turns it inward. He often blames himself for his disability. He feels sharp guilt for the help he requires and does not ask simple favors of people he does not know very well. On rare occasions, he is suicidal.
Sometimes I think I’d like to die because a lot of people would be glad I was dead. Their lives would be easier. And sometimes I just get tired of being myself. But I can’t take myself too seriously because I can’t do anything. If I were less disabled I would be able to kill myself, but then if I were less disabled I might not want to.
Every morning Mark wakes without an alarm at seven. The room is dark: the curtains are drawn and he has no way of opening them. He recites:
The Lord is my shepherd; I shall not want. He maketh me to lie down in green pastures: he leadeth me beside the still waters. He restoreth my soul: he leadeth me in the paths of righteousness for his name’s sake. Yea, though I walk through the valley of the shadow of death, I will fear no evil: for thou art with me; thy rod and thy staff they comfort me. Thou preparest a table before me in the presence of mine enemies: thou anointest my head with oil; my cup runneth over. Surely goodness and mercy shall follow me all the days of my life: and I will dwell in the house of the Lord for ever. Amen.
Sometimes I think of God as having given me polio and I get very angry. I don’t talk directly to God. I’m scared of God and other authority figures. I ask for favors from God, to help me get through the day, to help me get through the morning routine.
I remember when I was sick in ’91 and nearly died. I was hospitalized for a urinary-tract infection and came down with pneumonia. I was scared shitless. I was saying Hail Marys in my head over and over. The emotional subtext of that was: “Oh dear God get me out of this I don’t want to die I’m scared of dying I don’t want to die here.” And I felt God answered my prayers. I heard a voice say I wouldn’t die of that. The implication is I’ll die of something else. Everybody dies. I feel very doomed to die. When I was sick I imagined death as a presence, a force in the universe, a force that knows your name and address and social-security number and wants to get you, and it will. It always does. I think death is the strongest force in the universe except for God, and God’s just a little bit stronger. It’s really a close call.
Mark lost his faith for several years when he was a boy. He grew up in a conservative Irish Catholic family in Boston. One day his parents announced that the family was going to Quebec to visit an eighteenth-century cathedral built in honor of a saint. They said they wanted to bring back holy water and visit the saint’s shrine. On the way, Mark lay face up beneath a chest respirator on a hospital cot in the back of the family’s station wagon. It was his first long car trip and he remembers what he saw: the heavy Maine woods, the signs in French, the bright colors of Canadian houses. The cathedral was enormous. Lines of people in wheelchairs moved slowly up several entrance ramps. Mark’s parents wheeled him inside and maneuvered him so that he faced a broad stone wall. At its base was a pile of crutches and braces and artificial limbs, which a priest said had been abandoned by pilgrims who had prayed to the saint and sprinkled themselves with holy water and been healed.
I was crying. My mother thought I was tired but I was really too upset to talk. I felt worthless and sad that everyone had done so much for me. My parents had done so much, and the Church. I felt like God had more important things to do. I hated myself for getting polio — was it God or the virus or me? It was much more than I could handle, more than any kid could handle.
We got two bottles of holy water and took it home and they sprinkled me every day for maybe a year or so. I thought God must have been mad at me because I was such a horrible person, so if I needed God’s help it wouldn’t work. After a while I just quit believing in God. It was kind of an atheist epiphany: we’re all going to die, we’re all going to be dead.
Mark’s tongue and his mouthstick, a twelve-inch wooden dowel, provide his only means of physical independence. At one end of the mouthstick is a detachable rubber eraser and at the other a black plastic bulb, which he holds in his mouth. When he is not using the mouthstick the bulb rests on his cheek, poised to roll into his mouth.
Mark gropes with his tongue as if it were a limb. He uses it to grab his drinking-water tube (which leads to a jar of water that sits on a night table beneath his head) and to transfer his mouthstick bulb from one cheek to the other. His tongue often looks like a beckoning finger.
Within inches of Mark’s head is an array of controls he can operate with his mouthstick. Two plastic boxes with buttons are taped to a slender pole attached to the iron lung. One activates a tape recorder that plays recordings of books. The other buzzes open the door. In front of Mark’s face is a cabinet on rollers. The light switch of a lamp above Mark’s head and the dial-tone button of a speakerphone are installed in the cabinet top. When Mark slaps the dial-tone button with his mouthstick the phone automatically dials an operator. Speaking into a small microphone clipped to his pillow, Mark asks the operator to dial a number. In the center of the cabinet top is a turntable whose edge Mark can nudge with his mouthstick. On the turntable are two remotes — one for a TV and VCR and one for a portable stereo — and several books on tilted stands. Mark’s computer fits vertically into a wooden frame beside them.
To the right of Mark’s head is a plastic mouthpiece connected by a ribbed tube to a portable respirator. The respirator, a device shaped like a car battery and covered with angular knobs and recessed pressure gauges and indicator lights, sits in a tray beside the iron lung.
An adjustable mirror is clamped to the iron lung above Mark’s head. The reflective side faces the ceiling. Photographs crowd the side facing Mark. Scotch tape holds them weakly and they periodically fall, brushing Mark’s face and waking him in the night. The photographs are of former attendants: Barbara, an anthropologist who works in Namibia; Karen, who gave Communion in a local church and talked to Mark about philosophy and baseball; Chandra, to whom Mark dedicated a collection of poems. Some of the photographs are beyond Mark’s field of vision, and his memories of the people in them are consequently rare.
Taped to the end of the iron lung, just above Mark’s head, are a photograph of disabled writer Lorenzo Milam, whom he admires and corresponds with, a map of Namibia (from Barbara), a photograph of his sister, and a quote from the poem “Berryman” by W. S. Merwin:
I had hardly begun to read I asked how can you ever be sure That what you write is really Any good and he said you can’t You can never be sure You die without knowing Whether anything you wrote was any good If you have to be sure don’t write
As he waits for his morning attendant to arrive, Mark listens to the news or the previous night’s baseball scores on the radio or reads or makes phone calls. Mark likes his current attendants (he has six) but is not particularly close to any of them. When the attendant arrives, between 8:30 and 9:00, he removes the portable respirator hose and leaves it on the wheelchair, winds the water tube around the bar above Mark’s head, unclips the microphone and winds its cord around the lamp’s arm, lifts the mouthstick from Mark’s cheek and sets it on the turntable, and pushes the cabinet and night table against the wall. In its sudden isolation Mark’s head seems abandoned, stuck arbitrarily in air.
On the ceiling above Mark’s head is a poster of a spiral galaxy. . . . When Mark is being lifted by an attendant he looks up at the galaxy to steady his nerves and keep from screaming; invariably, he screams anyway.
The attendant drops three vitamin pills into Mark’s mouth. They help prevent kidney stones. Mark also takes a spoonful of methenamine, a drug that discourages urinary-tract infections, to which he is susceptible because the constant horizontal position of his body keeps him from urinating frequently.
The attendant sits on a stool and feeds Mark a bowl of raisin bran or an egg and a crumpet. Mark drinks juice through a straw between bites. He chats as he eats: his mouth is full but this is the one moment when he and his attendant sit quietly together.
After breakfast the attendant holds a blue ice pack over Mark’s eyes. They often feel sore and the area below them swells; Mark doesn’t know why. Then a plastic dish is placed firmly beneath Mark’s mouth and his teeth are brushed carefully with an electric toothbrush. Foamy saliva runs down his cheek and he gasps repeatedly. He sucks water from a straw and spits into the dish. The attendant shaves Mark with an electric razor, and then pours water over his head and softly and quickly washes his hair with a special moisturizing shampoo. (Mark’s scalp is permanently dry: polio killed the nerves that operate the gland that produces scalp oil.) At first Mark narrows his eyes as if in discomfort, and then his face relaxes and shows pleasure. His face remains serene for some time after the attendant has finished.
Then comes what Mark fears and prays to endure: the iron lung is shut off and opened. The attendant flips a switch, lifts two latches on either side of Mark’s head, and pulls him out. He lies face up on a gurney. A teddy bear, a gift from Chandra, leans against his right shoulder. Mark’s body is four feet seven inches long and weighs sixty pounds. His spine curves laterally, its lower end pointing toward his right thigh. It has sharply bent his torso, folding his rib cage toward his side and leaving a deep crease in the soft full flesh above his hip. His spine’s angle is severe enough that if he were held upright his lungs would collapse under the pressure. Relative to his narrow waist and shrunken limbs, his stomach looks bloated. His left knee is permanently bent. His right arm has been twisted counterclockwise: his elbow and palm face directly away from his body. The heels and palms and fingers of his hands appear swollen. The backs of his hands, below the knuckles, are like small swollen sacs. His left hand is permanently clawed. In four decades of motionlessness, gravity has pointed his feet and curled his toes. They look like grasping hands. His fingernails and toenails are unusually long.
Polio killed most of the motor neurons that connect Mark’s brain and spinal cord. His movements are extremely restricted. He can barely move his left foot and leg, the toes of his right foot, some of the fingers of his right hand, his shoulders, and his neck. He has feeling all over his body. He itches. He feels his sheets and the collar around his neck. He feels his nails biting into his skin when they have grown too long. He feels his catheter when he urinates. He feels his heart beating. He feels his lungs expanding and contracting. He has sexual feeling. He feels pain.
Mark remembers when his body worked, forty years ago. He remembers a footrace with his cousin: Mark’s heart was pounding and he was hot and dizzy and angry that his cousin had beaten him. He remembers the soreness in his legs. He remembers he ran as often as he could; he couldn’t understand why adults walked so much. He remembers being knocked down on a sidewalk in summertime. He remembers peering around adults at a Saint Patrick’s Day parade. He remembers lifting strips of uncooked bacon to his mouth: a heavy, sweet taste. He remembers the pain of scratching his legs scrambling through hedgerows and the feel of his mother’s lips on his wounds.
When the iron lung is shut off, the silence is sudden and deep and surprising. Soon a faint sporadic hissing comes from Mark as he tries to breathe. Within five minutes he can scarcely speak, and the attendant, even with an ear at Mark’s lips, can barely hear him. The oxygen level in Mark’s blood diminishes quickly. He cannot get enough air in his lungs to cough and his throat fills with mucus. The attendant lifts him slightly at the hips, slides a bedpan underneath him, and gives him a sponge bath. With a washcloth or Q-tip or his own nails, the attendant tries to remove some of the layers of dead skin from Mark’s hands and feet. Every month or so, following Mark’s bath, his attendant clips the nails on one hand or foot (to do more would prolong the routine beyond Mark’s endurance). For ten minutes or more after Mark is returned to the iron lung, his mind drifts. He feels faint. He coughs softly and tries to get his breath back.
The attendant pushes the cabinet back into place, sets up the computer, and slips Mark’s glasses on him. The glasses have cheap plastic aviator frames. The right earpiece has been removed — it will not go over his ear, which is pressed into the pillow — and the left is taped to his eyebrow and cheek for stability. The glasses sit slightly askew on his face.
When Mark is ready to write, the attendant leaves. On most days, Mark spends about six hours alone between the visits of attendants. Things go wrong then. Sometimes his cat switches off the power strip into which the phone and stereo and computer are plugged.
Sometimes the cat walks over the tape recorder and changes the speed or volume. Sometimes the phone breaks. Sometimes an attendant leaves without properly adjusting the angle of a book, and Mark can’t quite reach it with his mouthstick. Sometimes he punches a hole in the tip of the mouthstick’s eraser and it loses its gripping power. Sometimes the stick breaks in the middle or falls out of its plastic bulb or Mark drops it. Once it broke in the early afternoon and his dinner attendant didn’t show up. Mark screamed and cried in fear and frustration. He felt tremendously alone. He was terrified that someone would break in or that something would catch fire or that the power would go out. The phone rang and he couldn’t answer it. He grew furious at being disabled. He prayed. He finally fell asleep, with the lights on, at about eight.
Mark’s apartment has cockroaches. Sometimes, usually at night, one crawls over his face and into and out of his left ear.
Three or four times a year, the iron lung needs work. A repairman comes and fixes it. It is possible that the iron lung could break just after Mark’s lunch attendant leaves, his dinner attendant could fail to show up, his mouthstick or phone could fail him, and he could suffocate in the early evening. He considers this possibility fairly often.
Mark writes by pushing the computer’s keys with the tip of his mouthstick. He is slow but efficient: the mouthstick rarely hesitates above the keys. When he is writing freely, Mark can type about 150 words in an hour. As he writes his shifting face brushes the respirator hose and water tube.
Mark writes poetry, book reviews, political commentary, personal essays, and letters to friends. His work has been published in several literary journals. A collection of his poems, Breathing, was released in 1990 by LittleDog Press of Austin, Texas.
Every few days, Mark goes on the Internet. He has an e-mail address and corresponds with friends and former attendants. He reads pornography. He joins discussion groups on sports and Christianity and politics. He keeps his comments short but is much bolder than he is in person. He has a good friend on the Internet. He likes the anonymity: his disability is invisible.
The lunch attendant arrives around noon, by which time Mark has usually finished writing. The attendant moves the controls and conveniences away from Mark’s head. Lunch is canned soup or a tuna-fish sandwich, served with a pickle and glass of juice. It generally takes fifteen minutes. The attendant washes the dishes and then opens Mark’s mail or pays bills or does his shopping. (Mark lives on a small fixed income provided by the state of California and the federal government. After paying his monthly expenses he is lucky if he is left with a hundred dollars; often, nothing remains.) Before he leaves, the attendant draws the curtains. Mark turns out the light and sleeps for an hour.
When he wakes, Mark turns on his lamp and looks around the room. The lamp points upward, making a diffuse circle of light on the ceiling and illuminating Mark’s field of vision, which encompasses roughly 120 square feet. In the course of a day his eyes roam this area many times without really seeing it: the space has remained essentially unchanged for so many years that its details have nearly lost their meaning.
When he looks to his right, Mark sees the front door, the alley outside his window, and a handful of volumes (the Bible, the Iliad, Middlemarch, Paddy Clarke Ha Ha Ha by Roddy Doyle, a collection of Hemingway stories) in a bookshelf that also holds his VCR, television, and CD player. On the back of the door is a poster promoting the book The Cripple Liberation Front Marching Band Blues by Lorenzo Milam. The poster is worn to softness, its corners ragged. It features a photograph of a man standing alone in a rough field. He is a dark figure, almost a silhouette against a clouded sky. He leans his entire weight into crutches whose metal bands squeeze his upper arms like tourniquets. Mark says this image captures some of the loneliness he feels.
On the wall Mark faces he sees:
— A print of The Lady of Shallott: a woman in a white dress with a pale, pained face, sitting in an open boat on a narrow stream. She gazes at her lover; in the Arthurian legend the sight costs her her life. Mark likes the idea of death’s imminence.
— Two framed photographs of smiling people: his parents and his sister and niece.
— Two cassette racks: Stan Getz, Lionel Hampton, Billie Holiday, Bartok, Beethoven, Bach, Prokofiev, Joan Baez, Irish folk music.
— A detailed map of Ireland.
— A print of an oil painting in which a woman reclines with a book in a lavish sitting room. Mark feels affection for her. He thinks, looking at her, that his life is not as bad as everyone makes it out to be, and in a way she is his idealization: a serene reader buried in an ornate armchair.
— An electric clock.
— Matisse’s Woman in a Purple Robe.
— Van Gogh’s The Sower.
— A framed photograph of Mark’s grandmother standing on a beach in Massachusetts.
— A framed photograph of Imogen Cunningham as an old woman, a camera hanging from her neck, as she peers around a tree at a young nude model with bronze skin.
Gifts from friends and attendants fill the odd spaces of Mark’s room, making it cluttered and ornamental and shrinelike. These are some of them:
— A tiny Mexican doll with wild hair in a red dress, hanging by a piece of fishing line from the deadbolt of the door.
— A wooden cross bearing a bronze Jesus.
— A Valentine’s Day heart painted in bright watercolors.
— A postcard of a dark Jesus holding a blue globe in his open palm.
— A bright likeness of the Virgin of Quadelupe painted on a dark board.
— A snow globe containing two swans.
— A brown-and-white stuffed ostrich wearing a necklace of Mardi Gras beads.
— A smiling plastic Mickey Mouse.
— A wooden box divided into a grid of compartments, each holding a gift: a walnut, a nativity scene, a stoppered perfume bottle, a conch shell, a crumpled rosary, a porcelain unicorn.
On the ceiling above Mark’s head is a poster of a spiral galaxy. Sometimes he imagines that there are other civilizations contained in the beautiful shapes of galaxies, and that they know nothing of us. When Mark is being lifted by an attendant he looks up at the galaxy to steady his nerves and keep from screaming; invariably, he screams anyway.
In the afternoon, Mark reads or makes phone calls or listens to books on tape. He often watches baseball games on television. He plays CDs by poking the remote control with his mouthstick.
During the meal Mark listens to the evening news on National Public Radio and chats with his attendant. After dinner, Mark follows the attendant out the door with his eyes and wonders if this is the last person he will ever see.
As Mark reads, he rotates the turntable with his mouthstick to get a better angle. With the mouthstick’s eraser, he drags pages from behind the right-hand pegs at the base of the bookstand and tucks them behind the lefthand pegs. Sometimes it takes a few moments to free a page or flatten it once it is in place. Glossy magazines present a problem. Their pages are slippery and cling together. When Mark can’t turn a page, he spins the turntable and reads something else or waits for an attendant.
The dinner attendant arrives at about four-thirty. Mark describes how his body has grown uncomfortable and the adjustments it requires: his blankets rearranged, his hips turned slightly, a pad underneath his right knee removed. The attendant shuts off and unlatches the iron lung and pulls Mark out. Mark begins to make hissing sounds in the silence and nearly loses his ability to talk. The adjustments are made, the attendant putting his ear to Mark’s lips and murmuring in response to Mark’s whispers.
Dinner is one of four dishes: chicken breasts, fish fillets, burritos, or sausage, served with hot tea and fries. During the meal Mark listens to the evening news on National Public Radio and chats with his attendant. After dinner, Mark follows the attendant out the door with his eyes and wonders if this is the last person he will ever see. An hour or so later, after reading or listening to music or watching television or talking on the phone, he turns out the light and falls asleep.
For a year and a half, from 1991 to 1993, Mark had his attendants dress him in women’s clothes. He did it about once a month at the end of his morning routine. He isn’t sure why. He explains it variously: he admired his mother more than his father; he has spent much more time with women than with men (his mother took care of him at home and many of his early attendants were women); he has never been able to do anything traditionally male; his body reminds him more of a woman’s than a man’s; it pleased him to alter an image of himself that he could not accept. In his poem “Femininity” he writes:
Naked on the gurney in the hospital corridor, surrounded by nurses, tall, young, proud of their beauty, admiring my skinny cripple body. “You’re so thin, you should’ve been a girl.” “I wish my eyelashes were as long as yours.” “Such pretty eyes.” I thought or think I thought or wish I’d said, “But your bodies work. Get scissors, cut my cock and balls off. Make me a girl, without anesthesia, make me a girl, make me a girl.”
It seems to Mark that he has always wanted to be female. He remembers trying to push his genitals back inside his body when he was three and four and five. As a boy, he often used the expression “Oh, dear” because he thought it had a feminine connotation (he uses it now only when something has gone seriously wrong, as if it has a singular grave power). Since he was sixteen he has had fantasies of wearing women’s clothes. Fear and guilt kept him from doing it until 1991, the year he was hospitalized. During his convalescence, he had a long conversation with a disabled woman. She was bisexual and unusually open about her sexuality. Mark admired the ease with which she assumed both masculine and feminine qualities.
Soon afterward, a friend introduced Mark to Brenda, a photographer who was interested in photographing disabled people in erotic situations. Mark called her and offered to let her photograph him getting a massage, but she wanted more active images. Terrified and excited, thinking about the closeness of death and the woman in the hospital, Mark asked Brenda if she would like to photograph him dressed in women’s clothes.
Mark and Brenda and an attendant went to a used-clothing store near his apartment. At first he could only bring himself to look at blouses; Brenda encouraged him to buy more. She had his attendant hold a blouse to his chest and took a picture. Mark was convinced everyone in the store was looking at him. Back in his apartment, the attendant took off Mark’s clothes and dressed him in what would become his standard outfit: women’s underwear, pantyhose (cut off at the ankle so they could be pulled easily over his feet), a bra, a frilly blouse, and a miniskirt. His face was carefully made up with pancake powder, rouge, mascara, eyeliner, eye shadow, and lipstick. He wore earrings and a wig. His feet would not fit into heels. He tried to wear necklaces but they felt like heavy weights on his chest.
Mark describes this as a dreary process. His body had to be carefully turned, his limbs lifted and painfully straightened. Miniskirts were difficult to pull over his jutting left knee. Bra fasteners bit into the soft skin of his chest. The eyeliner pencil’s point, trembling near his eyes, made him nervous.
Mark did not feel truly changed until his wig was firmly placed on his head, made to look realistic, and secured with bobby pins that often pricked his scalp. An attendant once put on Mark’s wig badly. He asked her several times to adjust it, but she grew impatient and he didn’t push her. For the rest of the day, Mark felt ridiculous and angry and vulnerable. The crooked wig seemed to mock him.
When he was dressed, Brenda began photographing him. In ten minutes he was tired and his attendant put him back in the iron lung. Mark told Brenda it was his fantasy to be a fashion model, and she encouraged him, pretending to be a fashion photographer, telling him to strike certain poses. He did as she told him and grew exhilarated and came, her camera catching the changing expressions on his face. Mark’s euphoria lingered for the rest of the week.
In women’s clothes and makeup, Mark joked more. He was playful. When he looked at his face in a hand mirror his attendant held up, he felt attractive for the first time in his life (though his masculine chin disappointed him). He was thrilled when people told him he looked pretty. His antagonism toward his body diminished, and he felt a surprising and unprecedented sense of peace.
I didn’t feel like a freak like I always had. I thought if I could turn into a woman everybody would love me, take care of me. I focused on the makeup and wig and tuned out the maleness.
Generally, when Mark dressed up, he read pornography on the Internet. This, along with seeing a sex surrogate, has been the most autonomous sexual act of his life.
Mark could hardly bear to abandon the persona the clothes created. (Several times he tried to sleep in them, but it was too uncomfortable: the sensation of material against skin bothered him, and his makeup, liquefied by sweat, ran into his eyes.) In the late afternoon, the attendant wiped Mark’s face clean, removed his earrings, and, bending and rearranging his limbs, took off his blouse and skirt and underwear and stockings and tossed them into the hamper. Mark thought of the clothes sitting there in a warm pile. He felt ridiculous and pathetic: he had imagined that pieces of cloth could transform him.
Cross-dressing was a complicated pleasure. Sometimes Mark imagined that his parents could read his thoughts and that every time he dressed up it pushed them closer to killing him. He thought they might hire someone to do it. Inevitably he became aroused as his attendants dressed him, and this embarrassed him. He feared that he was displeasing God and the fear persisted even after he talked to a priest, who told him he was doing nothing wrong. He thought he would go to hell.
After a year and a half of dressing up, Mark had three intense dreams in one night.
In the first dream, he was asking a favor of a social worker in a gray houndstooth suit. She said she couldn’t help him and pointed to a door. A sword pierced the door and he heard a deep voice announce, “The decision of the century.”
In the second dream, the character Miles O’Brien in the TV series Star Trek: Deep Space Nine was given a box containing information on British and Chinese culture. The information about China actually concerned an extraterrestrial society resembling China; this alien society would never be able to communicate with Britain. Mark felt sure that the two cultures in the box stood for the irreconcilable sides of himself.
In the third dream, a woman appeared before him. She bore scars of crucifixion on her wrists and held a rose in one hand and a thorn in the other. Mark recognized her as Jesus. She said, “You have loved and followed me because you thought I’d bring you peace and joy. You thought I saw you as a little curly headed boy. But I have come with a sword to divide. I will destroy everything you love. You may have peace if you stop trying to attract men.”
In women’s clothes and makeup, Mark joked more. He was playful. When he looked at his face in a hand mirror his attendant held up, he felt attractive for the first time in his life.
Mark entertained the possibility that the dreams had nothing to do with God and were born exclusively of guilt and fear. But he didn’t know, and not knowing frightened him.
Every day Mark thinks about dressing up. He is determined not to do it again but isn’t sure that he won’t. His feelings about it — a great desire to do it and an equal fear of God’s displeasure — tear him up. He still has the clothes. He cannot bring himself to throw them out.
I’m not that dramatic a person. I’ll probably just leave the clothes in the closet until an attendant says we have to clean them out. I let things go to hell until they’re unbearable. Until someone else says they’re unbearable.
Mark saw a sexual surrogate twice when he was thirty-seven, on the suggestion of his therapist. The surrogate told him his body gave pleasure; she treated his arousal as something other than a perversion. He was exultant. He bought a futon in case an opportunity arose. Seeing her has been his only shared sexual experience. A year later he wrote:
My life hasn’t changed. Occasional visitors sit on the futon, but I’ve never lain on it. My isolation continues, along with the consequent celibacy. I could hire prostitutes, but hiring prostitutes implies that I cannot be loved, body and soul. I would be treated as a body in need of some impersonal, professional service — which is what I’ve always gotten from nurses and attendants.
My desire to love and be loved sexually is equalled by my isolation and my fear of breaking out of it. The fear is twofold. I fear getting nothing but rejections. But I also fear being accepted and loved. For if this latter happens, I will curse myself for all the time and life that I have wasted.
In the night, any variation in the sounds of the iron lung immediately wakes Mark: when the fan belt is frayed it clicks; when the bellows needs lubrication it snaps; during a power failure the murmur of the motor ceases. On most nights, Mark wakes after midnight and can’t get back to sleep right away. Sometimes he is up for hours. Often he thinks about the polio virus.
I always thought it’d be easier to be disabled if you got hit by a truck, because you could see the truck. The virus makes me nuts because it’s invisible. I just picture this little tiny transparent plastic box with RNA spirals inside. I try to imagine what the virus has done to my body. I think about how it kills the cells that connect the brain stem to the top of the spine and I try to will the growth of new nerves there. Sometimes I try to lift one of my limbs and nothing happens. It’s really strange. It seems like a philosophical problem: Is this my body? And in what sense? If it’s my body, how come I can’t make it work? It’s quite maddening. I’ve always thought that if I was as smart as everyone said I was, then I’d be able to think up a way to make my body work.
Mark got polio in early September 1955, when he was six. A few months earlier, Jonas Salk had developed the first vaccine, but when children in California contracted the disease from a poor mixture of Salk’s formula, the Massachusetts Medical Society stopped inoculations. While doctors debated the safety of the vaccine, there was an epidemic in Boston; Mark was one of the last to contract the virus. He woke in the middle of the night with sharp pains in his stomach. He was carried to the car and driven to Children’s Hospital. A doctor told him to roll from a stretcher onto a bed. He did; that was the last time he was able to move his body. He soon fell into a coma that lasted a month. When he woke, he was in an iron lung.
In 1957 Mark went to Wellesley Convalescent Home in suburban Boston, where he was put in a room with two girls in iron lungs: three cylinders in a row, three heads emerging. The girls’ long hair fell over their pillows and hung in the air. They asked him if he was decent inside the lung and he didn’t know what they meant. He tried to will his limbs to work. When the weather was nice, nurses pushed Mark and the girls onto a big outdoor deck where teenagers in therapeutic beds played rock-and-roll on transistor radios. Mark stayed at Wellesley for six months. Shortly after he left to live at home, his mother told him the girls had died.
Mark lived with his parents until he was twenty-seven. His room had an intercom. His father and mother came in and out, ministering. Mark and his parents wordlessly agreed to ignore his condition as much as possible and so reduced it to physical inconvenience. Mark’s father could be grudging in his accommodations. Mark increasingly saw himself as an imposition on his parents’ lives. The guilt he felt then has lingered and expanded and grown abstract. He does not expect it to ever leave him.
From the late fifties to the early seventies, television formed the center of Mark’s life. He watched five hours a day on average and sometimes seven or eight. Television and movies felt decidedly more real to him than his own life. He spent a lot of time with his younger brother, Ken. They played with toys and watched television and talked about baseball and invented jokes. Then Ken went to high school and Mark saw him less and less. Mark has strong memories of the many times when Ken walked out the door and down the driveway with a friend or debating partner or girlfriend: Mark couldn’t turn his head to watch them but he followed their reflections as they moved across the screen of his television. Mark hated himself. He wanted to shed his body and go to heaven.
In 1976, ten years after the family had moved from Boston to Sacramento, Mark’s parents read about the disabled-students program at the University of California. (Mark had been tutored at home and had received a high-school-equivalency degree.) They called the California Department of Rehabilitation, whose director thought Mark could be admitted to Berkeley after a regimen of physical therapy. Mark went to Kaiser Hospital in Vallejo, and the program there strengthened him, allowing him to leave his iron lung and ride in a flat wheelchair for several hours at a time. After a month he was transferred by a social worker, whom he has never forgiven, to a different hospital, a warehouse with a dismissive staff and little physical therapy. The social worker had promised Mark that if he didn’t like the new hospital he could return to Kaiser, but now he was told that Kaiser had rejected his request for readmission. His parents had grown too old to take care of him. His new doctors refused to let him transfer anywhere that didn’t provide twenty-four-hour care. Mark didn’t know what to do; he stayed for two years. Nurses terrorized him by rocking him wildly or putting on his shirt so roughly that they tore the tendons in his arms. They touched him sexually to amuse themselves. In his poem “Mrs. Garcia” Mark writes:
I swear Garcia was a crazy bitch, A nurse who’d swing me about in the Hoyer lift With enough abandon to scare me, But careful, so she could say: “Now what was all the yelling about? I didn’t hurt your feet. You’re in the chair. You polios are screamers. Always were.” . . . During my next Garcia lift, Terrified as usual, I wanted to make some sounds, but sounds That wouldn’t make her mad, so I said, “Rutabagas! Rutabagas!” “What?” She asked and laughed a bit. “You’ve finally flipped.” “What’s the price of rutabagas now?” “I don’t know. I hate the nasty things.” I had deprived Garcia of her fun. It was a small revenge.
Eventually, after three applications, Mark was admitted to Berkeley. For two years he was pushed to class in a flat wheelchair; after that he used a modified electric wheelchair — a tray on stilts. He steered and adjusted his speed by raising and lowering his left foot and knee. A large curved mirror just above his head allowed him to see ten feet forward. He could not see his wheels and had to guess at the positions of ramps and curbs. It was the most frightening thing he had ever done.
It’s difficult to express how it was when I got to Berkeley. I’d always been in my home or in the hospital, and suddenly people were treating me like a grown-up. It was fall and I’d watch sunsets and it was just overwhelming, so overwhelming. I could go out of my dorm and down Haste Street and there was a parking garage with a field on top and I could see all the guys kicking soccer balls. The sky was deep blue and the lights were coming on and my attendant and I would go to the cafeteria and there’d be armies of people and more food than anyone could ever eat. I’d get a tray and my attendant would put it in my lap and after dinner we’d go up to the dorm and she’d put me to bed and I’d pass out a few minutes later. I wish I could somehow convey the excitement I felt. I remember just going into the Rexall was a sensory overload. They had millions of kinds of watches and millions of kinds of sunglasses and millions of kinds of suntan lotion.
In school, students just ignored me as much as they could. I was too scared to really approach them. I felt like an alien. I remember once I went to a professor’s office to talk about a paper. I was in his office in the wheelchair and he was behind his desk about two feet away, but he wouldn’t look at me. He just looked at my paper. That was the way it was at the dorms, too. The only people I knew were my attendants and, barely, a couple of the disabled students. I didn’t have much contact with people. We had a fire drill every now and then and a student would have to walk into my room and throw a red streamer for the fire department out my window, and I’d talk to the student. That was about it.
For the most part, Mark loved his classes. He loved discussing ideas. School filled his time. He graduated in five years and enrolled in Berkeley’s master’s program in journalism. In the summer after his first year, he was struck with postpolio syndrome and had to drop out. He needed a portable respirator whenever he left his iron lung, and it took him several days to recover from each outing. (Now Mark gets out one day each month for four hours.)
In one of his oldest recurrent dreams, Mark climbs out of his iron lung and walks out the door. There is nothing glorious or unexpected about the motion. It is uncomplicated and trancelike.
In the early hours of the morning, Mark sleeps soundly. He dreams often, and his dreams tend to recur.
He dreams of being pushed to class in a wheelchair and then finding himself alone: no one has come to take him home. He dreams that he is in graduate school in English and is healthy and has more stamina than he has had in years and goes to class in a thought-controlled wheelchair.
Abusive nurses dominate his nightmares. Often he is driven to Berkeley and has just begun to explore it when a team of nurses arrives and takes him back to a hospital like a prison.
He dreams of meeting an attractive woman. They talk at length. She is fascinated by him. A feeling of limitless possibility fills him. The dream ends suddenly; he wakes crestfallen.
He dreams of the disintegration of his family. He dreams of riding a magic carpet. He dreams of living in a house whose design somehow allows him to see into every room at all times.
In one of his oldest recurrent dreams, Mark climbs out of his iron lung and walks out the door. There is nothing glorious or unexpected about the motion. It is uncomplicated and trancelike. He wonders why he didn’t think of it before.
I’m happy when I’m writing a hard but good poem. And when I’m talking to a friend, or reading pornography on the Internet and no one can tell what I’m reading, or when I’m watching a good ballgame. Being in Candlestick Park is as happy as I’ve ever been, I suppose. Baseball makes me happy. It’s just so beautiful. A home run is beautiful, the diving catches are beautiful, the pauses. You go two or three innings and nothing happens and then when something happens: oh, the drama. I love it when it goes three, four innings with nothing happening and then all hell breaks loose. I just scream watching it on TV, like for a bases-loaded double I just scream and carry on. Nothing else makes me scream and carry on like that. I like the idea of being on a side and rooting for a team. I don’t think you can really appreciate baseball unless you’re on a side. You have to root. When you lose you feel lousy but you’re supposed to feel lousy. I like the sadness you feel when your team loses. I remember one day I dressed up in drag and I came and then I watched a ballgame on TV. I thought, That’s as good as it’s going to get.