Breathing : Mark O’Brien’s Existence Is Circumscribed by the 650-Pound Iron Lung That Encases His Body and Fills His Chest With Air. But the Life He Shapes Inside Is as Vital, and as Urgent, as Breath.

In the morning’s mail there is a manila envelope with Mark’s return address in Berkeley. I heft the parcel: just a few pages. As usual I go through all the other things first--the bills, a weekly solicitation for an environmental cause, a magazine from the college sorority of which I was briefly a member. Skimming this silly publication, habitually tossed in the trash immediately upon receipt, briefly delays the moment I will finally pick up the envelope and open it.

Inside there is a Xeroxed copy of an article and a brief note from Mark in handwriting that is not his since he has none; he has been unable to hold a writing instrument in his hand since he was paralyzed with polio at the age of 6. Now 45, he seldom leaves the massive iron lung that fills his chest with air 18 times a minute, its sibilant gasp measuring the rhythm of his days and nights. Different attendants handle his personal correspondence, and the handwriting varies accordingly.

I let out a little sigh. The reminders of Mark’s gargantuan physical incapacity drift over everything, like a sandstorm that seeps not only through the closed doors and windows but beneath the rolled-up towels pressed against them. Even this simple note dusts my fingers with the powdery residue of fear and discomfort that taints so many encounters between the crippled and the able-bodied.

“I’m the skull on the desk,” Mark said once, matter-of-factly. The what?

“You know, the skull, the death’s head, the reminder of death.” Mark O’Brien, memento mori, the ultimate party pooper. This was his explanation for the disquietude I’d encountered when I told people about him. I myself believed it wasn’t the fear of death that O’Brien evoked but the specter of a life so circumscribed that most people assume it is not worth living, and therefore not worth considering: condemned to eat, drink, laugh, cry, urinate, sleep, awaken and someday sicken and die while encased from the neck down in a 6-foot-long, 650-pound steel cylinder. His head is permanently turned to the right and his view of the world is from a prone position; his scoliosis, or curvature of the spine, is so severe that if strapped upright in a wheelchair, his lungs and diaphragm would crumple and he could not breathe. Most of the time, O’Brien is alone in his apartment; almost all the time he is without the touch of another human being--except the people he pays to come three times a day to feed, wash and dress him. If he has an itch, he cannot scratch it; if a roach crawls across his face, he cannot bat it away.

A published poet and journalist, he connects to the world outside his shabby apartment off Telegraph Avenue by means of a single crude instrument: a 12-inch stick with a plastic bulb on one end that he seizes between his teeth. With this mouthstick, he can rotate a small, revolving table next to his head that holds his radio, tape recorder and phone switch, and operate each in turn with a series of firm taps. He types on an old computer with the stick, and he uses it to turn the pages of books and magazines propped on the table. Once when the stick broke, O’Brien was helpless, unable to even call 911, until his roommate came home seven hours later.

What does it gain us to consider such an existence? Our first reaction is to turn away, an act that further diminishes those whose bodies have failed them. “When polio first appeared as an epidemic malady at the end of the 19th Century, people who were paralyzed were treated like the victims of a wasting disease, suddenly lifted out of the mainstream of life and transported to a special alternate universe reserved for those who are waiting to die,” wrote Jane S. Smith in “Patenting the Sun,” the history of the Salk vaccine. “The only problem was, they weren’t dying. . . . They were simply crippled.”

Like the machine that enables his child-sized recumbent body to breathe, O’Brien is a forgotten relic of a disease that has faded from the public consciousness. Polio was once more virulent than AIDS in this country: 333,000 cases were reported in the decade between 1946 and 1956--more than the total number diagnosed with AIDS between 1982 and 1992. Even the March of Dimes has distanced itself from polio, no longer raising funds in its victims’ behalf and focusing instead on birth defects. For Americans under 35, most of whom were vaccinated in early childhood, polio arouses no more dread than smallpox, which is now extinct. Today only 120 iron lungs are still in use by aging polio victims, according to Lifecare International, the Colorado firm that maintains the old machines with March of Dimes funds.

The iron lung was invented to assist people whose breathing muscles or respiratory nerve centers were paralyzed, until they recovered sufficiently to breathe on their own. Unlike modern positive-pressure ventilators, which push air into the trachea, the iron lung forms an airtight chamber around the body and momentarily creates a vacuum inside the chest. This mimics the natural action of the diaphragm, causing air to rush into the lungs.

Because of its bulk, immobility and generally horrific aspect, the iron lung wasn’t intended to be a permanent way of life. This was the worst fear of the doctors who tested the first primitive devices 60 years ago--that they would enable the sickest “polios,” those with the poorest prognosis, to linger on and on. “Many of the patients were so severely handicapped that often we felt guilty at saving their lives,” recalled Dr. James L. Wilson in his book, “Memoirs of the Respirator.”

O’Brien was that kind of patient, and he has had his fill of this sort of talk, the way guilt slides so easily into regret, a smooth segue from “You poor sonofabitch, how can you live this way?” to “You shouldn’t have to live this way,” and, finally: “You shouldn’t have to live.” It’s a slippery slope to negotiate as the national health care debate raises questions about whose life we can afford to prolong, and whose we can’t.

In an essay for Pacific News Service a decade ago, O’Brien deplored the publicity given Elizabeth Bouvia, a disabled woman who at that time was seeking a court order allowing her to starve herself to death in a California nursing home. A former social worker with a college degree, she told reporters she was tired of living with cerebral palsy, which had paralyzed her since birth. (Bouvia lost her lawsuit and now lives in a Los Angeles hospital.) O’Brien saw Bouvia as a whiner, and a dangerous one at that, for spreading the notion that death is preferable to disability.

“Along with other disabled people, I resent her saying this,” wrote O’Brien, who was far more handicapped than Bouvia. His own Irish Catholic upbringing in blue-collar South Boston instilled a stoicism perfectly fitted to what some clinicians term the classic “polio personality”--determined to achieve, loath to complain. “We fear able-bodied people will think her longing for death and pity is typical of all of us. It isn’t. We want to live. We don’t want pity.”

Yet long after meeting O’Brien, I still did not know how to write about him without succumbing to pity and worn cliches. “I think the fact of Mark’s existence can defeat writing, defeat interpretation, without bathos or some vice creeping into it,” says John Carnahan, O’Brien’s longtime attendant. “It always struck me as a very difficult thing. Even in the writings of disabled people themselves, disability is something they don’t get around.”

Then the mail arrived containing the note from O’Brien and a short story from The Sun, a literary magazine out of North Carolina in which his work has occasionally appeared. This story, however, was written by Gillian Kendall, the roommate of one of O’Brien’s former attendants. Its narrator is a young woman who takes care of a paralyzed man four days a week, and as her emotional attachment to “Joe” grows, so does her disconsolate guilt over her pleasantly aimless postgraduate life, complete with lover, while Joe suffers alone. The story is dedicated to Mark O’Brien:

“At the time I thought about Joe’s disability this way: I regretted it had happened to such a nice guy--as if polio would’ve been OK for, say, Phyllis Schlafly or Al Haig--but I wondered if he was so nice partly because of what he’d been through. Was he made patient by hospitals or humbled by pain? No, I thought, no one else’s character improved under stress: Susan’s eating disorder didn’t mellow her snobbery, Tim’s awkwardness didn’t make him more eager to please, my own vague loneliness didn’t lessen my critical nature. If Joe were de-paralyzed, I thought, he’d still speak quietly, sit straight but relaxed, remember birthdays, laugh at all jokes, return phone calls promptly and visit the sick. He would remain reliable and sweet, better than my friends and I.”

I, too, had pondered the genesis of O’Brien’s character and his remarkable ability to endure. Polio had altered his experience of life so profoundly it was impossible to extricate the de-paralyzed O’Brien from the real one. You hear of people “struck down” in their prime; Mark never had a prime. Most of his childhood, and all of his adolescence and adulthood has been constricted, to an extent barely imaginable, not only by his paralysis but also by the tank that cradles him in its permanent grasp. He never rode a bike, never drove a car, never had a girlfriend, never slept over at a friend’s house, never played baseball. A list of all his nevers would fill a book.

And yet. Meeting O’Brien, being with him, one gets no sense of this at all. Observant, funny, seemingly without self-pity, O’Brien doesn’t talk like a man sequestered from the world, but who seeks engagement at every turn. Stripped of the physical realm of ordinary existence, he reveals the human spirit laid bare to the bone, its ravenous hunger for life--for one more day, one more hour, another breath, a tick of the pulse. In Mark’s oddly youthful face, soft and still unlined in his mid-40s, you can almost see a naked beating heart, vital and frighteningly vulnerable.

Like Joe’s caretaker, I wished I could right the wrong of his misfortune. But I could not reconfigure the universe. All I could do was brush away the dust of fear and guilt, and get on with the job of telling Mark’s story.

IT WAS SEPTEMBER, RIGHT BEFORE HE WAS TO START FIRST GRADE IN Dorchester--the natives pronounce it DAH-chestah--in South Boston. It would be more than 20 years before he entered a classroom again.

Helen O’Brien: “He was complaining about pains in his stomach and we sent him to the hospital right away. Remember? It was evening time after supper. I put the kids to bed and he was complaining. He wasn’t the sort of kid to complain unless something was bothering him anyhow. So we took him right to the hospital. He was able to walk in. They did a spinal tap and that was it.”

Walter O’Brien: “Most of the kids around him died there.”

Helen O’Brien: “The ones that were real bad did, yeah.”

Walter O’Brien: “No worse than Mark.”

There is a haunting sameness to the stories of polio children during the epidemic years of the 1940s and ‘50s. From the precipice of robust, youthful health, they fall suddenly ill. Their families suspect the worst. There is the doctor’s hurried visit, for those were the days when doctors still made house calls; the rush to the hospital; the spinal tap, the dreaded diagnosis, the polio ward.

From this point on, their stories rupture: Most got better, miraculously better. Some did not, a failure deemed faintly shameful. The American myth held that one did not succumb to polio, but fought, overcame, surmounted it by strength of will--like President Franklin Delano Roosevelt, who locked his limp legs in braces to appear to be standing on his own.

Walter O’Brien: “Even in the March of Dimes, they always showed those little kids walking with sticks, you know: This ain’t too bad. A cute kid. Send money. They always showed the very least disabled. They never did show the iron lung concept, they tried to keep that quiet. That’s my opinion.”

Helen O’Brien: “People said, oh well, my kid--he fought, he came back. Well, maybe he fought, but they don’t all come back.”

Mark got polio in 1955, along with 28,984 other people in the United States. Only a few months earlier, Dr. Jonas Salk had gained worldwide celebrity for developing the first poliomyelitis vaccine. But after children in California and Idaho contracted polio from a batch of hastily formulated vaccine, the Massachusetts medical society halted inoculations. While doctors argued over the safety of the vaccine, a polio epidemic hit the Boston area that summer. Mark was among the last stricken.

Within hours of his arrival at Children’s Hospital in Boston, he was put in an iron lung. There were 1,043 deaths from polio that year, but children of the ‘50s knew that the truly unlucky victims were those in the iron lungs. Their bodies were swallowed up by machines that would forever define the concept--as any child could plainly see--of a fate worse than death.

Poliomyelitis is a notoriously capricious virus, usually no more disabling than the flu, which its early symptoms resemble. For centuries, human beings have fallen ill with polio and recovered with no ill effects. Mark was part of the small minority--less than 4%--in whom the virus penetrates the inner core of the spinal cord and brain stem, where motor impulses arise and are transmitted to the muscles. Inside this slender channel--the switching station, so to speak, for voluntary movement--the disease causes lesions that rapidly kill off large motor nerve cells.

Once destroyed, they cannot regenerate themselves as do cells in other large organs. Paralysis results, sometimes within hours of the first symptoms. Though statistically infrequent, cases of paralysis mount up alarmingly during a polio epidemic such as the one in 1952, which infected nearly 58,000 people in the United States. Thus polio became famous not for its normal mild manifestation, but its worst-case scenario.

Where the paralysis strikes depends on what microscopic portions of the spinal cord are affected, and how many motor neurons ultimately survive. A patient might walk, but be unable to chew or swallow; use one arm and leg, but not the others. Limbs that are paralyzed at first may later regain movement. This happens when motor neurons are merely shocked by the swelling caused when adjacent nerve cells are destroyed; after the swelling subsides, those living cells begin to work again. They may overcompensate, sprouting new connections to muscle fibers that had been inactivated by dead neurons. The sprouting phenomenon, as much as strength of will, is responsible for the satisfying sagas of polio victims who managed to cast off their leather braces and wheelchairs, and walk.

But over the years, the multibranched neurons tend to burn out, something like an electric outlet burdened with too many extension cords. This is one of the leading explanations for post-polio syndrome, which paradoxically afflicts many of those who were most successful in “overcoming” polio. Their number includes Roosevelt, whose weakened condition prior to his death in 1945 was caused, some polio experts say, by post-polio syndrome.

At Children’s Hospital in Boston, where pivotal research in the battle against polio had been carried out, Mark refused to die. And his limbs and trunk refused to move, despite the hospital’s arsenal of rehabilitative weapons: rocking beds (which used gravity to aid breathing), hot baths, physical therapy. “The dominant theory was stretch it till it hurts, then stretch it a little more,” he says, a painful and outdated regimen that led to a lifelong fear of being lifted, moved or immersed in water. When there was nothing more to be done, the doctors sent him home, where he lived in an iron lung. Outside it, he could breathe for only a few hours before the effort exhausted him.

Helen O’Brien: “Actually we fought to get him home because we didn’t like the situation there. We felt as though he wasn’t getting the attention he needed. We felt as though we could do it. And we did.”

Walter O’Brien: “Which was a big mistake. The doctor told me at the time, you don’t realize what you’re getting in for. And we both were righteously indignant . . . (but) he was correct. From the first grade on through high school, Helen had to take care of him day and night, feed him three times a day, bathe him, bowel movements. Twelve years of school she handled. She had to do all the work. Helen kept the therapy up for a long, long time with no result.”

Helen O’Brien: “The limbs, the arms, the legs, lifting the torso. You could only push him so far, because the joints were terribly stiff and, of course, I didn’t want to hurt him.”

Walter O’Brien: “And for all those years . . . we just kept going. All those years we were never able to go anyplace together--one of us always had to be home. That was every day of the week. I think Helen deserves tremendous credit. I think a lot of women would have walked away, years ago.”

Helen O’Brien’s large blue eyes, Mark’s eyes, blink as if she’s fighting back tears. “Another thing that made it easier,” she adds, “was he was a very intelligent person, an easy person to live with. He didn’t complain. Never.”

THEIR OLDEST CHILD’S POLIO WAS THE FIRST IN a series of tribulations for the O’Briens. Mark’s sister Karen, three years younger, died suddenly of pneumonia when she was 7. His other sister, Rachel, born after Karen’s death, is diabetic and already a widow; her young husband died of kidney failure. (Only Mark’s 43-year-old brother, Ken, a trial lawyer in Sacramento, has escaped serious illness.

Mark’s siblings played alongside him at home, and sometimes his mother wheeled him outside on his hospital cot to watch the games of neighborhood children. But for the most part he lived on the periphery of activity, the iron lung relegated to converted garages and back bedrooms of the family’s various homes--first in Boston and later in Sacramento, where his father was chief counsel of the Sacramento Army Depot. Aside from his mother’s stretching exercises, he received no rehabilitative physical therapy. He never returned to school; visiting teachers supervised the course work for his high school equivalency degree. There was no such thing as “mainstreaming.” His Catholic confirmation took place not with the usual ritual in the church sanctuary, but in the sacristy, out of sight of parishioners. “The priest said he didn’t want Mark to be embarrassed,” says Walter O’Brien, the memory still rankling him. “It wasn’t Mark he was thinking about.”

Because of the logistics involved, there were few family vacations. Once the O’Briens traveled to Quebec, an excursion that started out pleasantly enough until they got to the Cathedral of Ste. Anne-de-Beaupre, where a hidden agenda was revealed. As Mark described in his 1982 article, “How I Became a Human Being”:

“The thing I recall most vividly is the enormous stone wall covered with casts, crutches and various devices associated with illness. All of these things, we were told, had been discarded by people who had made the pilgrimage to the shrine of Ste. Anne, had prayed with devotion to the saint and had sprinkled themselves with the holy water which was available there. I realized that the purpose of the trip was not to see the red-jacketed Canadian soldiers in the Citadel or the Canada Dry bottling plant in downtown Quebec. The purpose of the trip was to find some means whereby I could get out of the terrible bind which polio had put me in. . . . To think that all of these strangers should be praying for me, that my parents should have gone to the trouble and expense of bringing us all up here and that thisentire religious enterprise was directed towards people like me was more than I could bear.”

After his brother started college, Mark’s isolation increased. He weighed only 65 pounds but was getting harder for his mother to lift and care for. “To keep from hurting her, I began to spend more and more of my time in my room reading, watching television and listening to the radio. Except for medical appointments, I never left,” he wrote. “I could see . . . that life was passing me by.”

The depth of his loneliness is seen in a passage from his unfinished autobiographical novel, in which a social worker probes the paralyzed “Paul” for details about his personal life. Paul answers warily:

“I’m not sure what you want to know. My life’s been pretty much boring since I got polio.”

“I’ll let you in on a secret, Paul,” she said, smiling again. “My life’s pretty much boring, too. Filling out reports, sitting on staff committees, drinking stale coffee because the vending machine’s broken. But everybody’s bored in a different way. So tell me how it’s been boring for you. Do you get out often, have any friends, know any women?”

“No. Not really. I mean . . . none of those things. I just stay in my room, watch TV. I have subscriptions to Newsweek and Esquire, so I read a little.” Jesus Christ! How could she ask such stupid questions? Of course, I don’t know any women! I never leave the goddamned house. And she can see how ugly and deformed I am. Women don’t unbutton their blouses for bony monsters like me . . . His right eye began to tear, although he did not know why.

It was blunt-spoken Walter O’Brien who pushed his son out of the nest after reading about the Physically Disabled Students Residential Program at UC Berkeley. The state Department of Rehabilitation paid tuition and expenses for qualified students, who lived in a dorm on campus with a 24-hour attendant and learned the skills they needed to live on their own. The elder O’Brien contacted the agency, but was told by the staff that Mark “couldn’t physically do it, couldn’t go through college with his disability.”

O’Brien, a former worker at the Boston Navy Yard who had gone to school on the GI Bill, bulldozed his way to Ed Roberts, the agency director. (He now heads the World Institute on Disability in Oakland.) Roberts was a Berkeley graduate who also slept in an iron lung. “I made it very clear that I wanted Mark to have the same opportunity he had,” recalls Walter O’Brien. “So he said sit down, we’ll talk. I talked about Mark’s condition. I said it was very bad, but if anyone can do this, he can. Shortly after that, we got him into the program.” But it would be another two years before he could actually begin classes at Berkeley.

In 1976, at the age of 27, Mark and his iron lung were loaded into a van and he left home for good. He entered the Kaiser Foundation Rehabilitation Center in Vallejo for evaluation--supposedly a first step on the route to Berkeley. He had mixed feelings about going. “I knew I had to get out. It was something I wanted to do but either I was too afraid or too passive to do it. I could see my parents getting older, too old to take care of me. I had them scared shitless. I was just like them--I didn’t know what else to do.”

After he left home, his parents got their chance to travel--to Europe, Hawaii, the Caribbean, Hong Kong. Mark has never been back to their comfortable ranch-style home outside Sacramento. Compared to the 20 years of unnatural intimacy forced by his paralysis, his relationship with his parents seems distant now, suffused with sadness. “They’ve had a terrible life, just dealing with their children--all this disease and disability,” Mark says. He believes they never recovered from the loss of his younger sister--the healthy child, not the sick one--whom he recalls in a poem from “Breathing,” a collection of his poetry published in 1990.

*

Your only playful sibling was your father,

Our father, who’s not in Heaven,

Who howled like a wolf when he learned of your death,

The most frightening sound I ever heard.

Death was waiting for me, I thought;

Imagine my surprise when death took you,

You, instead of me.

*

At Kaiser Hospital, O’Brien underwent a new kind of physical therapy, reviving his childhood hopes that his paralysis would miraculously improve. Though every day he felt stronger, Kaiser soon rendered the same bleak prognosis O’Brien had gotten at Children’s Hospital in Boston: His motor neurons were beyond salvage.

Medi-Cal would not pay O’Brien’s bill at Kaiser if there was no possibility of rehabilitation, so within a month he was shipped off again--to Fairmont Hospital in San Leandro, a large county-owned hospital that provided nursing care for quadriplegics. “They had a polio ward and people just got warehoused there,” recalls Karen Topp Goodwyn, a former Department of Rehabilitation counselor. From the moment he moved into the room he shared with a comatose patient, O’Brien hated Fairmont, but the doctors refused his pleas to return to Kaiser. He applied to Berkeley but was rejected. He was trapped.

Two things gave him hope: enrolling in classes at Cal State Hayward (the college sent a van to the hospital to pick him up) and learning how to operate a British-made typing device called a Possum. Each character on the keyboard responded to a pattern of beeps activated by microswitches that O’Brien bumped with his chin. The Possum was clunky and slow, but it gave O’Brien a way to put on paper the words that were piling up in his brain.

*

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?

Yo u polios are screamers. Always were.”

Exhausted by the turnings and the dips, I didn’t say a word.

She’d push me to Occupational Therapy,

Where I’d type my skinny novel, think about revenge.

--”Mrs. Garcia,” from “Breathing”

*

IT TOOK TWO MORE YEARS AND A RELENTLESS LOBBYING EFFORT BY Walter O’Brien before his son was finally admitted to Berkeley in June, 1978. Mark was almost 30 years old, full of yearning and without a clue as to how to manage his own life.

He soon found out. At Berkeley, a bold effort was under way to give severely disabled young people an education at one of the finest public universities in the country. At Goodwyn’s behest, the Department of Rehabilitation funneled dozens of quadriplegics into Berkeley’s residential program for disabled students, which set them up in a dorm with a full-time attendant during their first year. (After that they were usually expected to make their own living arrangements.) Critics carped at the cost--about $12,000 per student, paid by the state--but it was cheap compared to a room in a nursing home. And it offered a crucial dividend: a chance for an independent life.

“We were really trying to get people into a university setting because that opened so many doors,” Goodwyn says now. “Some of these people truly did not have the academic prowess to succeed at Berkeley, but I still wanted to give them the opportunity to develop independent living skills and get out. So we took a lot of risks. There were no other options for a lot of people at that time.”

During the heyday of the program in the ‘70s and ‘80s, about 250 severely disabled young people entered Berkeley through the residential program. O’Brien was ecstatic to be one of them. Television news cameras filmed his yellow iron lung as it swung by a crane through a dormitory window. Attendants pushed him to class in a reclining wheelchair and treated him as he had never been treated before--as an adult.

“Society didn’t expect much of them and we expected a lot,” says former director Susan O’Hara, a polio survivor herself. “We expected that everybody would be able to function on their own. There was rarely a person who didn’t make it.”

Recalls O’Brien: “They helped me with practical things like dealing with the bank. Also they insisted on making me pretend I was living by myself so I would have to deal directly with the attendants I hired. I couldn’t expect some daddy figure to deal with them. I had to accept the idea I was in charge, which was very difficult for me in the beginning. I had to be my own social worker, dealing with four or five different agencies. I had to learn not to be intimidated by the bureaucracies and to insist, insist, insist and make myself a real pain in the ass.”

AFTER MUCH TRIAL AND ERROR, rehabilitation engineers at Stanford University built a customized electric gurney, which he could operate with pressure from his left foot and knee--the only parts of his body below the neck he can move. It was another milestone, giving O’Brien the means to go where he wanted, when he wanted, by himself. Flat on his back, he used mirrors to negotiate bumpy sidewalks, through crowds of people; startled students wondered if he was being guided by remote control.

Steering the gurney was exhausting and dangerous; he once careened over a curb and dumped himself into busy Telegraph Avenue. It took him an hour and 15 minutes to go from one side of campus to the other. But he wouldn’t give up. “I wanted to show I could be like all the other cripples in Berkeley. It’s some big manhood ritual to be independent and control your own wheelchair,” O’Brien says.

Quadriplegics commonly take six or seven years to graduate from college, but O’Brien made it in five, earning a BA in English and a 3.4 grade-point average. Then came another reversal of fortune. Shortly after entering graduate school in journalism, his health collapsed. To his surprise, post-polio syndrome had caught up with him. “I didn’t think my physical condition could get any worse,” he said. He was wrong.

His capacity to stay outside the iron lung diminished dramatically, and he dropped out of school. He could no longer go on outings alone or without a portable respirator. The electric gurney, symbol of his struggle to become independent, sat unused in his apartment. Eventually he gave it to a medical mission in Nicaragua.

Post-polio syndrome spun O’Brien to the outer margin of the statistical backwash from the polio epidemic of the ‘50s. Of the estimated 600,000 or so survivors of paralytic polio who live in the United States, a tiny minority are--like O’Brien and Ed Roberts, who now uses a ventilator full time during his waking hours--wholly dependent on mechanical ventilation. However, their number is growing as thousands of polio survivors are newly weakened by the syndrome.

For the past 15 years, O’Brien’s home has been the living room of his small apartment near the Berkeley campus. (His roommate and emergency attendant, Bruce Ward, has the single bedroom.) Living independently “is not a matter of individual heroism, as a lot of people would like to think,” he cautions. “I need money from the government.” In addition to Medi-Cal services, he receives about $18,000 a year from a variety of sources: Social Security, county welfare and a federal rent subsidy program. It would cost taxpayers two times as much to support him in a nursing home, according to figures provided by the World Institute on Disability.

The same bureaucracy that gives also takes away. Whenever O’Brien earns more than $85 a month, the Social Security Administration requires him to turn over roughly 50 cents of every dollar he makes as a free-lance writer. After a nonprofit literary foundation awarded O’Brien a $17,000 grant, the government docked his monthly disability checks. Not until his father appealed did the agency stop; most of the $4,000 it withheld was never refunded. Things that would make O’Brien’s life easier--a better computer, for instance--aren’t easily acquired, even as gifts, because there are severe limits on the value of personal property disability recipients may own. The old Toshiba on which O’Brien now writes is on loan from a friend.

The linchpin of independent life for the disabled in California is the In Home Support Services program, which enables O’Brien to pay the half-dozen attendants who each work for him four to 10 hours a week. They make about $8 an hour--the going rate in Berkeley. Part secretary, part practical nurse, part companion, they do everything from shopping and cooking to emptying his bedpan and changing his urine bag. Many days, his attendants are the only people O’Brien sees.

He interviews and hires them and, when necessary, fires them. “That’s something people have to learn, to fire people who aren’t doing the job or who are abusing them in some way,” says O’Brien. “Sometimes it’s very rough emotionally.” When one of his favorite attendants refused to take orders one day, O’Brien felt forced to let him go. “It was awful. I kept thinking about what a shit he was and how much I hated him, and I cried because I missed him, and I hated it that things were this way.”

Mark continues to write book reviews, essays, poems and occasional journalism pieces, tapping the words one letter at a time with his mouthstick. His articles for Pacific News Service have appeared in the San Francisco Bay Guardian and the Oakland Tribune, and recently he edited the disability section of the upcoming Millennium Whole Earth Catalog. Several of his poems are about baseball, his lifelong passion, and in the author’s description for one of his poetry articles, he wrote: “In baseball season he roots for the San Francisco Giants; in winter he gets depressed.”

Though most of his work deals with disability, he resists being a standard-bearer for the cause. Hence his dismay when he attended a news conference hosted by the noted physicist Stephen Hawking, who is paralyzed and speechless as a result of amyotrophic lateral sclerosis, and found a radio reporter’s microphone thrust in his own face:

*

“She asked me whether seeing Dr. Hawking gave me hope. This struck me as an awfully stupid question. Hope for what? Could Dr. Hawking change my life, make me walk, get me a lover? I tried to think of a polite way to answer her. ‘It’s not that, so much, as uh . . . He gives me a sense of ‘hurray for our side.’ ”

“What was I saying? God knows. I just didn’t want to get sucked into being cast as a Spokesperson for the Disabled in a dreary story headlined “Disabled Inspired by Dr. Hawking.”

--From “The Unification of Steven Hawking” in The Fessenden Review.

*

Hawking, who married, fathered children, separated and now has a girlfriend, did not became disabled until early adulthood, which O’Brien believes is an advantage. “You see that with disabled veterans, with people who were disabled when they were teen-agers or in their 20s. They have more confidence, more self-esteem. The experience of going through puberty makes a person more independent. I envy that. It’s something I missed.” But is it possible that the sense of loss is more heightened in those people, that they are angrier with their fate?

O’Brien’s answer makes it clear only an able-bodied person would ask such a dumb question. “We’re all angry,” he says.

JOHN CARNAHAN KNOWS Mark O’Brien in ways that a lover might, or a mother. Before he came to work for O’Brien five years ago, his girlfriend Chandra had shared O’Brien’s apartment and worked as his attendant for eight years. “My best friend,” O’Brien calls her. It is an axiom of disabled life that one’s closest relationships are often formed with one’s employees. “Mark has had to spend a long time learning how to interact with people--Chandra helped him a lot with that,” says Carnahan. O’Brien was characteristically persistent in achieving sociability. “He’s a very stubborn person, an indomitable person, very relentless.”

A graduate student at Cal State Hayward, Carnahan says he became an attendant because “it was the only job I could get. I’m not qualified to work at Jack in the Box. In addition to that, I’m doing something personal and useful. I don’t have the contempt for this job I might have for others.”

Carnahan speaks to O’Brien in such a low, gentle voice that I cannot make out what he’s saying, though I’m sitting only six feet away. He makes a sandwich for O’Brien’s lunch, tears off pieces and feeds them to him with bites of a pickle and sips from a bottled drink. He cleans O’Brien’s glasses and settles them on his face. He opens the iron lung to take off the clothes the morning attendant had put on O’Brien a few hours earlier, clothes he no longer needs to wear because he doesn’t feel strong enough for an outing today, has not felt strong enough for weeks now.

(Carnahan quit in March, married Chandra and is now concentrating on his graduate work. O’Brien has since hired a new attendant.)

Before leaving the room, I notice O’Brien is wearing a handsome multicolored shirt of a vaguely ethnic weave, and that his small body is lost inside his clothing. Only his hands are revealed, slender and seemingly boneless, like empty white gloves, with an invalid’s long fingernails. There is a small teddy bear beside him on the narrow mattress that slides into the iron lung. Its name, O’Brien informs me later, is Maurice.

Standing in O’Brien’s kitchen, I get a whiff of the smell of a urine bag being changed. (O’Brien’s paralysis does not affect bladder and bowel control, sexual potency or ability to feel; the external catheter he wears is for convenience, not necessity. “Except for my lungs,” he has noted ironically, “all of my internal organs work well.” In fact, he seldom sees a doctor.) Time passes with exaggerated slowness, not only because I am lingering awkwardly in the kitchen, but because O’Brien’s voice is getting weaker as the oxygen leaks out of him. I can hardly wait for the iron lung to start up again, and it occurs to me that O’Brien must feel that way, too.

Bristling with metal gauges and locking levers and screwed-down portholes, the massive yellow tank aroused such a strong sense of dread during our first interview that I could scarcely think of anything else. It overwhelmed the cramped living room and swallowed O’Brien up, its huge padded collar clamped so tightly under his chin that he appeared to have no neck, not to mention a body. His Boston-accented speech was breathy and flat and the words ran together in bursts, on the exhale, punctuated by the rhythmic wheezing sound of the leather bellows on the iron lung. Though it was sunny out, the room was dark; it hasn’t been painted since 1979 and faces a bleak alley. Little roaches occasionally darted across the table next to O’Brien’s head.

When it was time to go, I almost bolted for the street. I walked for a long time in the late spring afternoon, gulping air and taking long strides. My arms and legs--how strong they felt, how perfectly coordinated. Everyone, everything in Berkeley seemed full of life. The students were young and beautiful. Even the old hippies looked healthy, vigorous. The town gardens were bursting with new roses and tangled vines of jasmine, seasonal glories that seemed a world away from O’Brien’s depressing quarters.

“Sometimes I have dreams where I figure out how to walk,” he says. “In the dream I think, oh, all I have to do is that! It’s something I go round and round in my head about. Like why can’t I walk? Is it me that can’t walk or is it my body that can’t walk? Is it my mind, my brain or my body? If it’s me that can’t walk, then it’s my responsibility I got polio. Why would I get polio? It just goes on and on and on. . . . Part of the problem with getting a virus is not only is a virus invisible, it’s very abstract. It’d be easy if I’d been hit by a truck because I could see the truck.”

The iron lung is an umbilical cord that keeps growing shorter. “We used to be able to go to a restaurant and he could stay out for an hour and a half without his ventilator,” says his father. “His lungs are very weak now.” He has been to only two movies in the past year--”Much Ado About Nothing” and “The Crying Game”--and hasn’t been to Candlestick Park to see his beloved Giants play since 1990. Perhaps because polio warped the skeletal structure of his breathing cage so young, he doesn’t tolerate ventilators well; after only three or four hours he needs the tank again.

“He’s more likely to push his limits than not. He’s the kind of person who will go out and ride around until he becomes very sick,” says Carnahan, who was with O’Brien in 1991 when he became ill at the California Shakespeare Festival at Orinda. They couldn’t get the Berkeley “crip van” to pick them up early, and O’Brien had to be hospitalized for dehydration. He quickly developed pneumonia, and there was talk about putting him back in a nursing home.

“I decided I’d rather be dead than in an institution. There’s a doctors’ myth that disabled people need 24-hour care. If you never ever want anything to go wrong, I guess you could say that, but I’d rather take my chances,” says O’Brien, whose memories of hospitals and the nursing home include being left for long periods of time with his naked bottom in a bedpan when he failed to defecate upon command. “Here I have control over my body, what I eat, what I do. I’d like to be able to write and listen to baseball games. I figure if I’m in a hospital, someone would steal my computer and there’d be so much noise I wouldn’t be able to listen to a radio. Anything valuable in a hospital gets stolen.”

One of the grave risks O’Brien faces is that the machinery that keeps him alive will fail. Years ago he heard about a patient who had lived on his own in Berkeley and suffocated when the fan belt on his iron lung broke. If the power to his iron lung goes out, O’Brien can switch to the portable ventilator--but only if someone is there to turn it on for him. Without a key to his apartment, no one can enter to help him because the electronic switch that he taps to open the door doesn’t work. So far he’s been lucky; none of the blackouts have lasted more than 45 minutes. During a recent outage, his screams attracted the attention of a neighbor, who called 911. Firefighters carrying a portable generator were ready to force their way in when the power came back on.

Death is one of the subjects his parents don’t bring up. “We never discussed it,” says his mother. “We’ve always tried to act as if nothing was wrong.” Says his father: “He’s always accepted it could be any day. He don’t get depressed about it. We talk sports a lot. We talk about writing. It’ll take more than this to lick him. The doctors said he’s not gonna last, and he did. He’s got a great will to live.”

Another verboten subject is sex. Nine years ago, at the age of 36, he happily lost his virginity with a professional surrogate, a woman who is paid to help men work out their sexual difficulties. In a moving article he wrote for The Sun, O’Brien described seeing his naked body in a mirror that the surrogate brought to one of their assignations. He had not seen his genitals since he was 6 years old, before polio had twisted his body out of sight below his chest. “No one in my family had ever discussed sex around me. The attitude I absorbed was not so much that polite people never thought about sex, but that no one did. . . . I wanted to be loved. I wanted to be held, caressed, and valued. But my self-hatred and fear were too intense. I doubted I deserved to be loved. My frustrated sexual feelings seemed to be just another curse inflicted upon me by a cruel God.”

After his experience with the surrogate, O’Brien bought a futon for his apartment in case other sexual opportunities presented themselves. So far none has. When asked why he doesn’t hire a prostitute--there are prostitutes in Berkeley who specialize in disabled men--he replied that he wasn’t interested in sex for the sake of sex. The next day, he wanted to clarify his answer. “I talked about wanting a relationship more than sex, which I guess is true, but it’s only part of the truth. I think I sounded too noble. Part of it is I’m just too scared, too shy, too cheap. The thing that gets me is if she still has to be compensated monetarily, that means she must think it’s really icky and horrible to be with me in a sexual way.”

Thirty-nine years of quadriplegia afford ample time to contemplate what the poet Gerard Manley Hopkins called the mountains of the mind--”. . . cliffs of fall/ Frightful, sheer, no-man-fathomed.” Though O’Brien casts himself as a timid man, beset by many fears, it is impossible to know him without being struck by his courage. I searched for another word to describe it, but there it was, courage, rooted so deep I could not fathom the source. Faith is probably part of it; O’Brien keeps the Bible on his reading table and used to go to Mass regularly. He is an admirer of Matthew Fox, the self-described “post-denominational” Oakland priest who was silenced by the Vatican for outspoken teachings that challenge traditional church doctrine.

O’Brien has also been in counseling since 1982. His therapist works primarily with disabled and chronically ill people, including those who are HIV-positive. She thinks polio survivors tend to have a “different mentality” from many other disabled people, one that fits the polio stereotype of being fighters --”they push and push.”

O’Brien no longer has hopes of becoming de-paralyzed. Instead he imagines a wheelchair that he can control with his thoughts. Turn left here. Go this way. Faster. When asked what would make his life better now, his wish list is practical, restrained: “I guess I’d want a bigger apartment. There’s barely enough room for me to get in the wheelchair. I’d like to be able to pay my attendants better. I’ve been told that my pay scale is about average--I’d like to get in the upper reaches. I’d get a big four-door filing cabinet. I’ve been wanting one for years. I think I’d like a better computer so I could store everything in memory, and so I could play games.”

Like all quadriplegics, he is vulnerable to pneumonia, urinary tract infections and other disorders that, in his weakened state, could kill him. But the most dangerous ailment that threatens O’Brien and other severely disabled people is depression. He is hoping his doctor will prescribe medication to lift the cloud of despair that darkens the days when O’Brien is too tired to write, to get dressed, to go out. On other days, it takes surprisingly little to cheer him up.

“When I was seeing the surrogate, I was the opposite of depressed. I’m happy when I’m writing something that’s hard but good. And when I get a new toy--a tape recorder or computer. When I’m talking with people. When I’m caught up in a baseball game. Baseball is the only thing that makes me yell and cheer. It’s astonishing. Boom--there’s a field, it’s huge and it’s green and I just want to stay there forever. My fantasy is getting my iron lung there behind home plate.”

During the ‘80s, O’Brien went to games at Candlestick with a friend, Lance Howland, an editor and former Berkeley resident. “He’s a little more of a fanatic than I am,” says Howland. “When the Giants blew a 10-game lead to lose the pennant (in 1993) it was like driving a stake through his heart.”

He has known O’Brien for 16 years, ever since he interviewed him for a story and “sensed he was kind of alone--he needed a friend.” Over time, he has watched O’Brien decline physically but grow in other ways. “He’s much more sure of himself as a writer and as a person now.”

Last year, O’Brien’s ambition was to go to Candlestick Park just once before the season ended. He didn’t make it. Now he’s hopeful again. He’d even settle for a game at the Oakland Coliseum, “if I can just overcome my pathological hatred of the A’s.” He makes it sound carefree--a day at the ballpark!--though this single excursion will take more stamina than he’s mustered for many months.

That’s the beauty of baseball, as O’Brien would be the first to tell you, and its indisputable advantage over our ordinary lives: There’s always another season. The hopes of the baseball fan are reborn perennially, endlessly, a cycle of renewal as old as the game, as easy and natural as breathing itself.