Deciding Not to Die
updated 01/18/1993 AT 01:00 AM EST
•originally published 01/18/1993 AT 01:00 AM EST
"There was not another mark on him," says Larry's mother, Amelia. Yet in that split second, the 6'6", 240-lb. McAfee, an avid outdoorsman, hunter and fledgling parachutist, had sustained what the medical profession calls a "complete injury," one that would leave him permanently paralyzed from the neck down—unable to walk, eat or even breathe again unaided.
In 1989, broken in spirit after being warehoused in a series of institutions, McAfee won the legal right to shut off his life-sustaining respirator. But today the man whose story is told in the CBS docudrama The Switch (airing Sunday, Jan. 17) lives with four other severely disabled people on the outskirts of Augusta, Ga., in a modest two-story house, the very first independent-care home in the state—and one that would not exist without the crusade that was championed by McAfee himself.
As described in The Switch (the tide refers to the mouth-controlled timer that would have allowed him to shut off his ventilator), McAfee's very existence, however arduous, seems nothing short of miraculous. Given mouth-to-mouth resuscitation at the accident scene by a nurse who happened to be picnicking nearby, he was airlifted by helicopter to Atlanta's Georgia Baptist Hospital. McAfee, played in the TV movie by Gary Cole (Midnight Caller), spent the next year in Atlanta's prestigious Shepherd Spinal Center before returning to his apartment and round-the-clock home-nursing care. But in the fall of 1987, his $1 million insurance coverage ran out and he became, in the words of Dr. Russ Fine, a University of Alabama professor and talk show host who is now McAfee's close friend and advocate, "the living example of every thing that's wrong about the system that serves [severely disabled] people."
Because there was no suitable place for him in Georgia, McAfee first was transferred to a nursing home in Ohio for 14 months. He was placed among elderly patients and had no television or telephone. "You are just a sack of potatoes," he says of his time there. After complaining loudly, McAfee was moved In the intensive care unit of Atlanla's public Grady Memorial Hospital, the only facility in Georgia then equipped to care for respirator-dependent patients. It was there, surrounded by dying patients and an overworked medical staff, that he began his battle for the legal right to die.
In September 1989, a superior court judge ruled that Me Aloe had the right to turn off his ventilator, a decision upheld by the Georgia Supreme Court and reluctantly supported by McAfee's agonized parents. Fine installed the switch that McAfee himself designed. "But," says Fine, "I had this intuitive sense that he didn't want to die."
That intuition proved correct. The device gave McAfee something that had been denied him for four years: control. "I'd forgotten what it was like," he told Fine. In winning the right to die, McAfee instead found renewed determination to live and began his battle to establish an independent-care center for the severely disabled. In a moving appearance before the Georgia legislature in February 1990, he told lawmakers: "Remember that in an instant, this can happen to you or, worse, to someone you love."
Today, as a result of his efforts, McAfee lives with two men and two women in a modest brick-and-clapboard house partly subsidized by a $33,000 annual appropriation from the state. A rotating staff of a dozen nursing assistants and a 24-hour on-call nurse provide care. His lungs must be suctioned 10 times a day and his bowels manually emptied. Yet on Larry McAfee's good days, he goes for a ride outdoors in his wheelchair or spends hours at his computer preparing for a job he hopes to land at an engineering company. The fateful switch still exists but somehow no longer seems crucial. "If I ever have to return to an institution, then I prefer death," says McAfee, his voice punctuated by the rhythmic whoosh of his ventilator. "But never as long as we have it as good as this. My life is good now. I have hope."
GAIL WESCOTT in Atlanta