Paraplegic in Limbo Between Life, Death

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.

His approach to end-of-life care enlists medication not to dull patients into a stupor but to open them up to examining their own lives and legacies.

“The medical care is important to allow psychological process to take place,” Clifford said. “If you’re in severe pain, if you can’t breathe, it’s hard to pay attention to the other issues.”

Mark Person views his death mainly as a physical relief and an unburdening of his family. Yet he is fearful of what lies beyond.

“He is afraid that when you die, you go into an abyss,” Robin Person said. “Part of the reason he’s not going off the ventilator is he’s afraid. He wants to die, but he’s afraid to die because he doesn’t know what that means.”

“Dr. Clifford told him, ‘You never die. Your body may die, but your essence will always live on, through your wife and your children and your grandchildren.’ That’s something he’s working on,” she said.

The pain relief that Clifford prescribed has helped Person enjoy his infant granddaughter. He savors images of her, lying between his legs on the bed, quietly drinking a bottle of formula.

“I’m a baby person,” Person said, a semblance of a smile crossing his face.

His physical condition deteriorated in recent weeks, and doctors told him that a lung infection was likely to blame. His fevers exceeded 103, and sometimes he cried for hours or even days at a time. Lately, though, his condition has improved somewhat.

After a long visit at home, Mark and Robin’s son, an Army scout, recently shipped out to the Mediterranean. A few weeks ago, their daughter and granddaughter spent several hours at Person’s bedside. The toddler gave him a real kiss.

“He’s said his goodbyes,” Robin Person said. “Life’s moving on, and he’s not moving with it.”

Meanwhile, she stays at his bedside, working long hours, supervising the nurses, trying to soothe his body and quiet his soul. She believes that his life, at long last, may be nearing its end.

“I’ve never been so resolved, finally realizing how tormented he is mentally. It’s almost inhumane to keep him alive at this point. I don’t want to lose him because I love him so much, but at the same time, because I love him, I think it’s time for him to go. I just want him to go easy.”