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 Engtish 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, 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 anytwhere 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