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The Nation

Paraplegic in Limbo Between Life, Death

Crushed by a truck three years ago, he ponders whether to turn off life support. 'I'm finished,' he says. ' ... This isn't who I am.'

March 09, 2003|Chuck Oxley | Associated Press Writer

BOISE, Idaho — Before the accident, Mark Person lived an everyday life. He delivered newspapers at night, enjoyed his family during the day, and played softball or bowled twice a week. An army veteran and handyman, he could fix just about anything.

Everything changed on a warm June day three years ago. While Person was working under his pickup truck, the drive line snapped and the vehicle rolled over him, pushing his chin deep into his chest and pulverizing a vertebra in his neck.

"As soon as it broke, it felt like somebody stuck a hose in my mouth and rinsed me with warm water. I knew immediately that I was paralyzed," Person said, lying in the bed that has become his universe.

Person, 40, lives in a small, rented home in Boise. His hospital-style bed and medical equipment sit in the middle of the living room; a big-screen TV glows near the foot of the bed.

A ventilator pushes air into his lungs. Nurses suction his lungs every four hours because he cannot cough. Car batteries are stacked up next to the bed in case of a power failure.

Person is in extreme neuropathic pain, yet he cannot actually feel his own body. Everything in the room reminds him that his life will be shortened and painful. A "DNR" document -- a legal request meaning "do not resuscitate" -- hangs prominently in view.

Person is stuck between here and gone, a limbo through which most people pass much more quickly and mercifully. His condition challenges an ambivalent medical and legal system designed for quicker transitions.

As he endures his biological prison, every moment presents an excruciating yet unanswerable question: Is life worth living in his current condition? The answer changes from hour to hour, day to day.

"I'm finished," he said. "I mean, this isn't Mark. You can call me Joe or Jack or whoever. This isn't who I am. I've still got brains, I'm still pretty smart, but I forget things, of course."

Person depends on a ventilator to keep him alive. He has the right to ask to be removed from the breathing apparatus, and his doctors would have to respect those wishes. It's a decision that he has delayed for more than two years. But after months of complications, he feels on the verge of making the request.

His is not the only life transformed by the accident.

Robin Person, 38, is his chief caretaker and most aggressive advocate. Married in 1982 and divorced in 1993, they did not stay apart for long, but remain unwed. Government aid rules prohibit wages to family members of the disabled, so the $9 an hour that Robin Person earns as Mark Person's caretaker would evaporate if they remarried.

For the first eight months after the accident, Robin Person gave up her apartment and slept in a hospital chair by her former husband's bed. She helped him navigate through the bureaucratic morass in his bid to live at home instead of in an institution -- and in January 2001, he became the first ventilator-dependent quadriplegic in Boise to live independently.

Robin Person's life now revolves around being a full-time caretaker. She barely remembers how it was before the accident.

"What you would call normal, I don't know what normal is any more," she said. "What you do with your family, that's not normal for me. I don't go to work 9-to-5, come home, cook dinner, play with the kids. I don't get that. I have made this my life. I have made this my dedication."

She feels drained by the worries and intensity of their situation.

"Life is horrid," she said. "There is no joy. This is torment. Every night, I pray and ask God why he is punishing me and putting me through this."

Last fall, having had enough of constant pain, loneliness and the humiliation of 24-hour care, Person decided that he wanted his ventilator removed.

"He feels degraded as a man, to have to be suctioned, turned, dressed, bathed. He can't do anything for himself," Robin Person said.

The doctors were sympathetic, but they have to be careful in such matters. An ethics committee was convened to discuss his situation, and Person was asked to see a psychiatrist to determine if he was mentally competent to decide whether he wanted to be taken off life support. He was.

The committee also asked him to see Dr. Kevin Clifford, a staff physician at St. Alphonsus Medical Center who provides an end-of-life consulting service, offering an alternative to the medical establishment's usual focus on saving and preserving lives.

Clifford counseled Person, listening to his complaints and concerns about the intensely personal issue of dying. He prescribed new medication to relieve the pain, promising that if Person still thought that his quality of life was too low, then he could stop taking the medication.

The process of dying can bring new appreciation for whatever life remains, Clifford believes, recalling how his own mother's death years ago from cancer brought clarity and purpose to both of their lives.

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