Mark O’Brien was born in Boston, where he contracted polio at the age of six.
The polio paralyzed him from the neck down, including much of his lungs. He spends most of his time in an iron lung.
In 1982, he received a B.A. in English from the University of California at Berkeley.
“I was twenty-nine when I came to Berkeley,” he wrote in the Spring 1982 issue of CoEvolution Quarterly, when he was still a student. “Until that time I had been a child of my parents, dependent on them at home, and a patient of doctors and nurses, dependent on them at hospitals. That Fall I hired attendants for the first time. . . . The state of California provides money for disabled people to hire attendants, something that turned out to be very important for me. It felt much better being an employer who hired attendants to work for me than being a patient who waited for nurses and others to care for me. The government spends considerably less when I live on my own and hire attendants for basic needs than it spent to keep me in a hospital. In the bargain I also learn to control my life.”
Too disabled to operate an ordinary wheelchair — except for moving his neck from front to right side, the only movement he has is in his left foot and left knee — Mark asked some engineers at Stanford University to modify an electrically powered chair for him. “They tested several devices. One day, by raising and lowering my knee a very short distance, I was able to move a dot through an electronic maze. If that was possible, they said, I could move through the streets. But there were no cars or people in the maze. . . .
“Through a series of mirrors — a large one above my head and two fisheyes on my right side — I am able to see an area of nearly 360 degrees. But I had to learn to judge distance perspective, different in each mirror. At first, I was exhausted after only a few minutes of practice. What with me getting exhausted quickly and the chair breaking down, it took several months before I had enough skill and confidence to go on the street alone.
“Now I ‘walk’ alone. I take myself to class. It takes me longer to get anywhere than it takes a walking person. But I get there, and I get there when I want to get there. I hire no attendants now to move me from place to place. With each step in my independence, the government saves money.
“Once I misjudged a curb. The chair toppled and I fell out of it, bruising my knee and my ego. I was scared but I knew there was no turning back, that it was unacceptable not to power my own chair. I drove alone as soon as my knee healed. I recently learned that some strangers refer to me on campus as the guy who goes to class on his bed. And someone, describing my moving alone, was quite sure that the chair was operated by remote control, that I couldn’t be in control of it. I am.”
Mark writes with a mouthstick and a computer.
— Ed.
Danielle
Danielle, you never told the truth to me. I should have listened carefully to Joe when he said, “She’s a great bull-shitter. You shouldn’t trust her, Mark.” You were the social worker there, So I had to take you seriously. I was delighted and surprised When after spending twenty days Inside the Kaiser Hospital You said you’d push my chair outside And talk with me a while. We went out on the third floor mezzanine. I saw the reflection in the glass I’d later see so many times, The pretty lady pushing crippled Mark In his funny-looking, laid-back chair. You sat upon a bench. In back of you I saw Vallejo’s business section. It wasn’t very beautiful. But it was the largest panorama I had seen in months. “I think we ought to talk about your future, Mark. You can’t stay here indefinitely, of course.” “Why not? Donna, all the therapists say I ought to stay.” But then you said the Kaiser worked in teams And that the therapists were just a fragment of the team; Only you could see the overall design. And then you tried to sell me to the Fairmont. Your information seemed a little vague. “It’s in Oakland, I believe, or thereabouts. They have a real good reputation.” “But do they have the therapy I need, The P.N.F. that Maggie Knott developed here?” “I’m sure they do, and if for any reason You don’t like it there, just ask the social worker, Mrs. Erdmann, to get the transportation all arranged. She’ll send you back to Vallejo.” Considering the warmness of the day, The brownness of your eyes, I figured, What the hell, give Danielle a break. Besides, it’s hard to miss With a money-back guarantee like that. Arriving at the Fairmont, I perceived It was a hot and desultory place. The paint was old and chipped, The nurses and the patients Equally resigned to nothing ever happening. Everything disorganized. It was a county hospital For those who couldn’t buy the ticket To a decent place. I couldn’t get you on the phone. It was a major hassle just to use the phone. Mrs. Erdmann expressed her sympathy and doubt That the process would ever be reversed, That I would ever get back to Vallejo. Then the fat, officious doctor Slammed the door right in my face. “First the Kaiser asked us, Then the Kaiser begged us, To take you off their hands. You’re not going back. That’s all there is to that.” And who was I to blame? “Danielle, Danielle, you screwed me good,” I muttered, as I hit the mattress with my stick.
Sara Ellen And The Sixteenth Of July
I She said that she would walk across the street from me, But I would have to drive to campus by myself. I had never driven there by myself. It was enough to cause some nervousness in me, But she’d be close enough to help me out If anything went wrong. I wanted to drive perfectly And meet the exacting standards that she set, To go up the middle of every ramp And STRAIGHT, not wobbling from side to side. Argus-eyed, I went up Dana Street, Her reflection in a convex mirror, A bubble of reality, across the street from me, Yet near my nose. She had been training me for several months. This was her last day working for me. I wanted to show her I could safely drive my chair. I rolled across the sewer-top on Channing Way. I knew she wouldn’t like that. I bounced up and down the ramp with ease, But perfectly? I wouldn’t know for sure Until she gave me her report. I recognized her by her red straw hat That was conspicuous in the shade near Bancroft. “That was good, very good. You won’t be needing me anymore.” I felt elated. She hardly ever offered compliments To be polite. She was telling me the truth And so I drove with confidence To Medieval History in Dwinelle. The professor praised me for my paper. “The best in the class.” He walked away And turned, “A joy to read.” It seemed that everything was going well that day. After class, I drove home by myself And puffed upon the straw that gave the silent signal For the automatic door. It opened slowly, like a horror movie door. I parked myself so I could read the source book for my class. I read Bede and other writers of three digit years Until my eyes were sore. Enraptured by a freedom I had never known before I thought I’d do what normal people do. Leave the homework and the house And window-shop on Telegraph. II Warm. July. A Summer’s day. I could go anywhere I pleased. Like childhood. I crossed the street to the traffic triangle, Impatient Volkswagens in my rear-view mirrors. Sarah Ellen said the ramps were always painted pink. I saw a strip of pink to the left of the bus stop sign. Ah, ha! I’ve found a short cut. I won’t have to drive to the corner of the triangle. But Shakespeare and Co. was not supposed to fly up in the air, Nor Krishna Copy. Something bad was happening, But what? Filled with Bede and other English saints, I said a wordless prayer. I knew the chair would roll and fall upon my back, That I’d be dead. I lay upon the asphalt, Conscious, glad, My left leg hung up in the chair. The chair was buzzing on its side. Somebody asked, “Are you O.K.?” “Yeah,” I said. I didn’t feel much worse than other times I’d been hurt. “Just get my leg out of the chair.” He did. I felt myself, No broken bones, a stinging bump on the head. Small animals of pain inside my joints. “You think I ought to call an ambulance To take you to a hospital?” There were a dozen people standing around me, All cool and self-possessed. It must happen everyday in Berkeley, I thought, People falling out of wheelchairs. The ambulance came, attendants placed me on a stretcher. Three times they asked me if I wanted to go to a hospital. I said no, just want to go home. An attendant insisted that I go to check things out. No thanks, I said, no waiting Till seven in Herrick’s Emergency Ward, Hungry, tired, surrounded by the accidents Of gun and drug and car. They took me home through the crowd that stood around my door. The door opener must have activated When the wheelchair hit the street. The attendants placed me on the bed inside my iron lung. They wanted to turn the respirator on. A complicated job, I thought. Again, I said, “No thanks. I’ll call someone who works for me.” III It was a Thursday, Enio’s day to work. I phoned him, asked the tall Brazilian to come early. When he came and saw me on the bed, He asked me what had happened. After telling him the sad details With calm detachment, I asked him to take off my clothes And turn the respirator on. By now, a knee had swollen. This made it difficult, painful to take off my clothes. The pain and exhaustion now were filling me. When he turned on the switch, I cried and cried for Sarah Ellen. All her effort, care and patience Had been wasted on me.
For Raymond Lanier
I knew that Lonnie didn’t want to eat With Raymond. Nor did I. I tried to keep My gaze away from him because his mouth Would open uncontrollably and let His thick saliva ooze all over him. And there was this: he couldn’t talk. What could I gain by eating with this slob? And so I ate my lunch with Lonnie, heard him talk About the dive which broke his neck, about His motorcycle shop in Chico, while Another nurse gave Raymond lunch away From our uncaring eyes. Every day His parents came to push his chair around The grounds. A grim, determined pair they seemed; I wondered what disasters they had seen. The nurses talked with them a lot about Their son. His eyes are beautiful, they said. One day a nurse who put a stethoscope To Raymond’s chest could not detect a beat. “His heart has stopped,” she said in quiet awe. A code was called; the P.A. speakers cried: CODE BLUE, C-2, STAT! CODE BLUE, C-2, STAT! Then doctors, nurses and technicians ran Into our crowded room. The squeaking sound The crash cart made could not be heard above The urgent, human sounds the doctors made. A swirl of orders filled the air. “I need The mallet quick, goddamnit, QUICK, I said!” But I, aloof, remained above it all, Encapsulated in my Iron Lung, Amused to note that doctors weren’t the calm Professionals portrayed by Robert Young And Richard Chamberlain, but people just As scared of death as everybody else. This attitude of smugness kept me warm Until for reasons not explained, they took Me, Iron Lung and all, outside my room And parked me in another room, the room Where women patients spent their lives. The room Was quiet as a stone; there were no clocks Or television sets to tell the time. Some silent boring hours passed until The social worker, Mrs. Erdmann, came To talk to me. She talked about the plays Of William Shakespeare. All his tragedies, She said, contained a point where things began To fall apart. The bold protagonist, No matter what his cunning, skill or strength, Could see his fall foreshadowed by a small Event. Macbeth saw Banquo at the feast And after that it went from bad to worse Until the murd’rous thane became a corpse Without a head. She paused to think a while. Now Raymond led a fairly normal life, She pointed out, despite the fact that he had Severe cerebral palsy. Playing cards And camping with his family were not Beyond his reach. The point of which I talked About, the one in Shakespeare’s plays, occurred For him five years ago; he fell and broke His shoulder bone. And ever since that time He’s suffered complications which he could Not quite get over. “Raymond died,” she said. She tried to comfort me. I didn’t need That kind of help. I didn’t mourn his loss That much. “Too bad he died so young,” I said, “At twenty-three.” But all I cared about Was that there’d be a bit more space inside My crowded room. The p.m. nurses took Me back into my room. I asked a nurse To play a tape of “Appalachian Spring.” She reached into my bedside stand and slipped. “There’s blood all over the floor; it’s Raymond’s blood. I thought they cleaned up all that mess.” I spent The weekend after that inside the bright Solarium. I read and overheard The nurses talk in an adjoining room. A nurse seemed struck by Raymond’s death. “They say He typed and wrote exquisite poetry, About the way he felt when people looked At him as if he were a freak.” And so I learned of my insensitivity, Insensitivity so great I failed To recognize a human being caught In much the same predicament as I. This numbness of the feelings isolates Our souls, until we’re strangers to ourselves.
© Copyright 1985 Mark O’Brien
