Mark O’Brien’s iron lung, his “breathing machine,” was a whooshing 650-pound cylinder, the mustard yellow of kitchen appliances in the 1970s. It was hard to miss in his small Berkeley apartment. On its side was taped a notice: “This porthole may be opened should you feel the need to a) touch, b) tickle, c) feel up the person residing within. —The Management.” Several visitors had availed themselves of the opportunity, prompting his wry response: “It pays to advertise.”
Mark, a poet and journalist who died in 1999 at 49, was well known in the 1980s and 1990s in Berkeley as a disability activist. Stricken by polio at age six, he was unable to move from the neck down. It took unusual abilities for him to live a richly creative life in that condition. I never stopped asking myself how he managed it, a question that is addressed in the 2012 film The Sessions, in which John Hawkes portrays Mark with uncanny fidelity. In one of the opening scenes, Mark is lying on his back, alone at night, in the iron lung. His nose is itching, but his hands are useless and there’s no one around to scratch the itch—the first of many predicaments in the film. Pause. A silence. Then, in Mark’s reedy voice, the solution: “Scratch it with your mind.”
I first met him in 1997 at a Pacific Film Archive screening of an earlier film, Jessica Yu’s Breathing Lessons: The Life and Work of Mark O’Brien, an Academy Award–winning documentary that presents him in his own words—Mark reading his poems and talking about his life, accompanied by visuals that give a sense of how he lived. After the screening, his gurney was wheeled to the front of the theater so he could respond to the audience. I bent over and introduced myself: “I’m a poet too, and I’d like to know you better.” Sure, he said, come visit me anytime.
What drew me were the poems I heard him read in Breathing Lessons, poems about his nurses and attendants, his sister Karen, his gripes and fantasies, his “ecstasies of despair” at unrequited love—poems rich in diction and fierce with emotion. I was stunned by “Breathing.” Here are its first lines:
Grasping for straws is easier;
You can see the straws.
“This most excellent canopy, the air, look you,”
Presses down upon me
At fifteen pounds per square inch,
A dense, heavy, blue-glowing ocean,
Supporting the weight of condors
That swim its churning currents.
And its last: “I inhale it anyway, / Knowing that it will hurt / In the weary ends of my crumpled paper bag lungs.” What a range of images and tones, connected and impelled by the urgency of his voice.
The poems Mark read were from his second chapbook, The Man in the Iron Lung. The chapbook that followed, Love & Baseball: Poems on America’s Favorite Pastimes, included poems by Mark and Susan Fernbach celebrating their new love, which was to transform the last years of his life. By the time Mark was putting together that collection, we’d become friends and he asked me for a blurb. I was happy for a chance to praise his “rare beauty of spirit, searching intelligence, sprightly wit and unsparing candor,” as I put it, and to express my admiration for “the body of his work”—a deliberately chosen phrase. In the copy he gave me, there’s a dedication in shaky capital letters in bright green ink.
Mark’s autobiography, How I Became a Human Being: A Disabled Man’s Quest for Independence, tracks his progress from “dependent” to “independent”—that is, from object to subject—crediting the “disability revolution” that helped make the transformation possible. Once he became a “human being,” able by society’s definition to “bear the major responsibilities required for a self-directed life,” he propelled himself around the Berkeley campus in a motorized gurney, earning a B.A. in English literature in 1982. Later, confined nearly full-time to the iron lung by post-polio syndrome, he used a mouthstick to make phone calls, hold a pen, turn the pages of a book, type articles and poems on a computer keyboard.
Visiting Mark at dinnertime, I would pull up a stool, tip my head sideways to face his head on the pillow, and feed him the chicken burrito he always asked me to bring. Once I asked if I could bring my sons, who were then in their early 20s; soon they began to visit him on their own. One of them said quietly, on leaving his apartment, “Why do I ever complain about anything?” My son was expressing what we all felt—that by his very presence, Mark helped us keep a sense of perspective about our own struggles.
Mark and I talked about poetry, parents, Shakespeare, religion, the Bible, life and death. He could be funny and playful, even silly. I said I’d read a newspaper article about identical twins who were raised apart; both liked to sneeze loudly in elevators just to see people’s reactions. “You mean there’s a gene for sneezing in elevators?” he laughed. His ready wit was not just an obligatory social skill; keen and reflexive, it no doubt helped him survive.
He could physically manage to write only two hours a day, so writer’s block was a luxury he couldn’t afford. “And I try to write as clearly as I can,” he said. “Because it’s hard for people to understand my speech, I want my writing to be as clear as possible.” He thought of poetry and journalism as related, both requiring clarity, specificity, and concision. Journalism gave him a voice in the community and a little income, but his poetry—as Susan Fernbach put it—“came from his soul.”
He and Susan liked to read poetry to each other—Adrienne Rich, Sharon Olds, Yehuda Amichai in the translation I gave him. Other favorites were Cavafy, Berryman, Ginsberg, and, always, Shakespeare. He recited from memory Shakespeare’s Sonnet 18 (“Shall I compare thee to a summer’s day?”) as a way of expressing his gratitude to the sex surrogate who had given him a confident sense of self.
Interviewing Stephen Hawking, he asked whether the distinguished physicist ever felt frustration or rage about the condition that had left him a quadriplegic. He found Hawking’s reply—“I don’t have anything to be angry about”—disingenuous. “If it’s not two feelings at the same time,” he insisted, “it’s not a real feeling.” He was frank about his own frustration and rage, but he chose not to regard himself as a victim.
His response to polio, paralysis, and life in the iron lung reminded me of a sentence in Man’s Search for Meaning, Viktor Frankl’s book about surviving Auschwitz. “Everything can be taken from a man but one thing: the last of the human freedoms—to choose one’s attitude in any given set of circumstances.” Auschwitz is an extreme case, of course, and I’d learned about it mainly through books; Mark’s “given set of circumstances” was the most challenging I had personally witnessed. His attitude embodied for me Frankl’s definition of human freedom. I was not surprised to find as the epigraph to his autobiography the refrain of the old spiritual: “Free at last, free at last, / Thank God Almighty! / I’m free at last.”
After Mark died in 1999, missing him, wanting to understand better what I had learned in my sessions with him, I wrote the poem “The Color Green.” I watched him confront the “rooted intractable weight / of matter”; he taught me about soul-making, and about the deep connection between life and art. As I suggest in the final stanza, his ars poetica was of a piece with his ars vivendi:
Like me he writes poems
but he does it letter by letter
on a propped keyboard, the mouthstick
wobbling between his teeth.
That kind of speed keeps a poet accountable.
He won’t ever say, “The grass is very green”
when it’s only green.
In 1990 Mark published an essay, “On Seeing a Sex Surrogate,” which furnished the basis for The Sessions. Earlier, working on a piece about sex and the disabled for the Pacific News Service, he had come to question his situation. “In interviewing sexually active men and women, I felt removed, as though I were an anthropologist interviewing headhunters while endeavoring to maintain the value-neutral stance of a social scientist,” he wrote with mordant wit and unflinching self-scrutiny. “Being disabled myself, but also being a virgin, I envied these people ferociously. It took me years to discover that what separated me from them was fear—fear of others, fear of making decisions, fear of my own sexuality, and a surpassing dread of my parents.” He wrote of his sexual frustration: “Nothing was working for me … the way it works in the movies.” Today, by a happy irony, there are movies—two movies!—that reveal how he succeeded in making his life work.
The Sessions purports to be a film about the body—its potentialities and failures, its gratified desires. Mark is determined, despite his fears, to become fully adult at age 37 by losing his virginity. Thinking he is “the ugliest man in the world,” hating his “pale, thin body with its bent spine, bent neck, washboard ribcage, hipbones protruding like outriggers,” he nonetheless allows himself the fantasy that he might be lovable. Might even find love.
With the help and encouragement of a skilled, empathetic sex surrogate, Cheryl Cohen Greene (played with dignity and grace by Helen Hunt), Mark manages to pass the tests of the adult male body, engaging in sexual play with a partner, sustaining an erection, achieving orgasm. He does so by exercising his mind: learning to regard himself with compassion and discovering ways to compensate for his physical limitations. I see The Sessions as a film about the mind—its anxieties, its despairs, its crudely mistaken notions, its triumphs. A film that asks us to ponder: What does it take to become a human being?
When The Sessions opened in Berkeley, I went to see it right away, impatient with reviewers’ prattle about nudity, camera angles, Oscars. I was surprised that a film so unconventional and candid about sex—about the sexuality of a disabled person, no less!—could be made in this country. And I was deeply moved by John Hawkes’s performance, which kept me laughing and left me sobbing. I went to see the film a second time, curious to check my response from a critical distance. No, that’s not true. What I wanted was another chance to visit Mark.