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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.

July 31, 1994|Brenda Bell | Brenda Bell lives on Bainbridge Island, Wash. Her last article for the magazine was "The Good Boy," the story of an Eagle Scout caught up in a brutal murder.

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.

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