Despite the downpour that day last month, David Jayne insisted that he be driven from his home in suburban Rex, Ga., to a cabin in the north Georgia hills to speak as planned to a group of teens on retreat. It was no easy trip, and once he and his father arrived, they found the driveway reduced to a creek of soupy red mud. Undeterred, Jayne’s hosts fashioned a ramp of plywood sheets and steadied his motorized wheelchair as he drove inside, dripping wet, to where 43 restless youngsters were waiting.
They grew quiet as Jayne, his voice replaced by a computerized speech simulator, explained how at 27 he had thought he had it all: a promising career, two cars, his own home and a loving new wife. Then came the persistent twitch in his left arm. At first he thought it was nothing, but a series of tests over several months led to a devastating diagnosis: Jayne had amyotrophic lateral sclerosis (ALS), the fatal neuromuscular disorder commonly known as Lou Gehrig’s disease. “But I am not here to tell you that life is all gloom and doom,” he told the teenagers. After all, Jayne himself, now 40, had defied predictions that he would die within five years and had dedicated his life to building a family and inspiring others. “The human spirit can endure incredible hardships,” he said. “You can do things you never imagined possible.”
As soon as he had finished, his listeners crowded around to talk and to touch him. “David says, ‘Always wait another day because the next day will be better,’ ” recalls Joey Megrue, 15, still troubled by the recent suicide of a friend. “Who would know better than David?” And who makes more of his life than David, asks his friend Debbie Weiher. “He’s trapped in that prison of a body, but he’s just so truly alive,” says Weiher, 38, who, inspired by Jayne, left a job she hated so she could work at home and have more time for her family. “He has changed my life. He’s changed a lot of lives.”
Though he can barely move three fingers and cannot eat or breathe on his own, Jayne has met frequently in recent years with youth and church groups, health-care workers, and patients like himself, sharing his determination not to be defeated by the worst that life has to offer. In spite of everything, he remains stubbornly active. And that was where he got in trouble.
Last November a local paper ran a feature reporting that Jayne, with the help of family and friends, had gone to a football game to root for his beloved University of Georgia Bulldogs. “I had not felt that alive in years,” he says. But a few days later Jayne’s home-care provider, Healthfield Inc., notified him that he was no longer considered “homebound” and that his benefits were being cut off. The company had been sending a health-care worker to Jayne’s home for two hours, four mornings a week, at a cost of $800 a month, which was paid for by Medicare. But Medicare’s homebound rule is meant to eliminate payments to patients who are not truly incapacitated, says Tony Strange, COO for Healthfield, and Healthfield has to follow the rule. Replies Bob Raubach, Jayne’s attorney: “It’s an absurdity. Like David, there are quadriplegics and others who need this service just to get out of bed and into their wheelchairs. But once there, these people can conduct their lives.”
Media reports of the benefits cutoff led almost instantly to a flood of outraged e-mails, and eight days later Congressman Mac Collins (R-Ga.) intervened and got Jayne’s benefits restored—with the provision that David would repay Healthfield if his appeal to Medicare, which is still pending, was denied. Then, in February, Jayne formed the National Coalition to Amend the Medicare Homebound Restriction for Americans with Significant Chronic Illness and began lobbying for changes in Medicare rules. Rep. Ed Markey (D-Mass.) and Rep. Christopher Smith (R-N.J.) are now introducing legislation to amend the guidelines to protect people like Jayne. “We have to remove restrictions that keep people like David from participating in life,” says Markey.
Helping change Medicare rules is hardly the purpose Jayne thought he would serve in life. The youngest of three children raised in the Atlanta suburb of Forest Park by his father, Bill, now 69 and a retired air traffic controller, and Georgia, 65, a home-maker and former teacher’s aide, Jayne was an active boy who loved hunting and fishing. “I can still see him when he was 4 or 5,” recalls Bill, “racing around with a toy gun in the itty-bitty hunter suit I bought him.” David was elected president of his senior class at Forest Park High School and went on to graduate from the University of Georgia with a degree in political science. “David was a definite hunk, very lean, very fit and very self-assured,” says best friend Suzie Cowan, 39. “He was going places.”
While working as a stockbroker in 1986, Jayne met Melissa Martin, then an Atlanta college student. They fell in love and married in the spring of 1987. That same year David went to work as a financial consultant at Domino’s Pizza. Life was very much on track. But that fall, he recalls, he noticed that “my left hand was not as nimble as usual when I tied fishing flies.” A few months later Jayne was diagnosed with ALS, a degenerative disease that attacks nerve cells controlling the muscles, robbing sufferers of the ability to move, speak, swallow and, ultimately, breathe. Just one week after David was told he had no more than five years to live, Melissa announced that she was pregnant with their first child. “After receiving the worst news of my life, I received the best,” he says. “I sobbed a lot. Through many nights.”
Hannah was born in January 1989, followed 18 months later by Hunter. Jayne is sometimes asked why he chose to have a second child when he suffers from a fatal disease. “I decided this disease was not going to take my life away,” he says, “and I didn’t want Hannah to be an only child.”
In the two years after his diagnosis the strapping 6’3″, 215-lb. Jayne continued to work. But by the summer of 1989 he had a slight limp and considerable muscle loss in his upper back. One rainy day, after a business trip, he was loading his suitcases into his car when, he says, “I fell flat on my back—like a turtle.”
At every point that the disease made an inroad, Jayne found ways to turn concessions into opportunities. When he could no longer walk and relied on a motorized scooter, he gave his children rides. “As they grew, we would tie their wagon to the back of the scooter and head out for adventures,” says Jayne. “Their acceptance helped me accept my loss.”
Other losses have been more difficult. “Losing the ability to communicate was devastating,” he says. “It was painful enough that I couldn’t pick up my precious children, but not being able to tell them that I loved them nearly killed me.” A laptop computer outfitted with special software and a voice synthesizer (a $10,000 system he saved for) soon replaced his voice. Often Hannah, now 12, and Hunter, 10, tape candy hearts to the computer screen with messages like “You’re my icon” and “I love you.”
In 1998 Jayne made his toughest decision yet. As the muscles in his neck and around his throat grew weaker, maintaining an airway became increasingly difficult. The solution was a ventilator, which requires a tracheotomy and forces air into the lungs. “The thought of being tied to a machine was my worst nightmare,” he says. “But I was young, and I knew that I still had much to offer my children and others.”
But caring for him became increasingly difficult. Last year he and Melissa separated (“She just burned out,” says a sympathetic Bill Jayne), and though Bill spent much of every day with his son, that was not nearly enough. At the urging of Suzie Cowan, David finally asked his congregation at St. James Catholic Church in McDonough, just south of Rex, to help. “It was very hard for a proud man like him,” she says, “but he did.” Sixty people, from teenagers to senior citizens, came forward, forming David’s Circle of Care. Each performs tasks ranging from repairing David’s customized van to doing yard work.
Some in the Circle were old high school friends—the girls referred to Jayne back then as the “Ken doll” for his perfect hair and features—he had avoided until a couple of years ago. Wheeling into his 20th reunion in 1999, he admitted he’d skipped the 10th because he was embarrassed by his condition. For that, Jayne apologized. “At that time I foolishly thought I could not face you, my friends,” he said. “I am sorry I didn’t have more faith in you. Please forgive me.” Speaking through his simulator, he explained how his struggle had helped him learn what makes a successful life. In the end, he told them, it is as Ralph Waldo Emerson once said: “To laugh often and love much…To leave the world a bit better…”
Gail Cameron Wescott in Rex