A Time to Die. Part 2: Living with debility

t is late October. Earley is lying, as always, in the blue-plush recliner in his basement apartment in Lincoln. On the glass-topped coffee table to his right stands his "ashtray" -- the charred V-8 bottle into which he deposits his cigarette butts -- along with the fat syringe used to deliver water and medication into his feeding tube, a carton of Merit cigarettes, a jumble of papers and envelopes, a pitcher-shaped plastic urinal and an antique English hobnail goblet with a little water in the bottom.
      The motorized recliner whirs as he brings it into an upright position. "Exercise," he jokes.
      Earley has started to slide into a slouch, and asks for a hand to help him pull himself up. He leans forward and with his hands pushes his calves toward the chair until his knees form right angles. Now irritably rejecting an offer of assistance, he explains: "This is the only thing I can do for myself."
      Next, he slowly places his hands alongside his thighs. His knuckles pointed downward, he lifts his torso and hoists himself a couple of inches backward.
      Within two weeks, even this small maneuver will be beyond him.
      Amyotrophic lateral sclerosis typically kills within three to five years of its first symptoms, although some people live much longer than that. In Earley's case, the disease has progressed in 22 months with brutal speed. He has been able to watch it happen.
      Through a poorly understood chemical process, ALS destroys the motor neurons -- the nerve cells that control movement. As each neuron dies, it fires an electrical charge, causing the muscle bundle it controls to twitch in a process called fasciculation. Many tiny twitches occur simultaneously; Earley remembers that, when his thighs were under attack, they "looked like the surface of an angry sea."
      "At first it was amazing," he recalls. "I'd watch a muscle twitch, twitch, twitch, and then die -- it was fascinating, absolutely fascinating. It took about a year to take my legs away from me, one muscle bundle at a time."
      The fasciculations would continue throughout his illness, like an army of ants under his skin, advancing from his legs to his arms to his torso and neck.
      ALS destroys only the ability to move; hearing, vision, thinking remain untouched. Earley can feel an itch on his leg, but it may take him 10 minutes to reach it to scratch.
      There is no cure for ALS, and little in the way of treatment. Earley has enrolled in the trial of an experimental drug that appears to have slowed the disease's progress. But nothing can stop it.

      One day last March, Earley found himself unable to rise from his couch. He called his friend Bob Zuck and asked him to bring over the wheelchair that Earley had acquired in preparation for this moment. He waited four hours for Zuck to arrive.
      What did Earley think about during that time -- was he upset, scared? Earley shrugs. "I watched TV. I knew this was going to happen one of these days."
      The loss of his legs made Earley a prisoner in his apartment. By springtime he was too weak to cook for himself. His girlfriend occasionally came over with lunch, but often he ate nothing until 5 in the afternoon, when the only take-out restaurant in his neighborhood started delivery. (With characteristic obstinacy, Earley refused Meals on Wheels, saying he knew from his work with the elderly that the food was not worth the $2 a day.)
      Nonetheless, Earley was determined to stay independent for as long as possible. Through most of the summer, he was able to move himself from his bed to his wheelchair, and from there to his armchair. And despite the increasing danger of falling, he showered on his own -- a process that took an hour and a half.
      By September, his back and arms had weakened. He bought himself a motorized hospital bed that could bring him to almost a sitting position. He had a rope attached to his bed frame at the foot: to get up in the morning, he would crank up the bed, grasp the rope and haul himself into an upright position; then he would reach for the wheelchair with his good arm and, using his bad arm to steady himself, throw his body into the wheelchair. Laboriously he'd wheel into the bathroom, and later into the living room, where he'd repeat the process in reverse to get into his recliner.

But by now, late October, Earley has reached a point of great dependency. He can no longer get out of bed. The Veterans Administration is providing a housekeeper five days a week, a nursing assistant on the weekend and weekly visits from a nurse and a social worker from Hospice Care of Rhode Island.

t was amazing to me to watch the process of all my talents falling away from me," says Earley. "I used to draw; I used to read; I used to write. The effort to do so now is too enormous for me to undertake."
      Around 7 or 8 each morning, his friend Reid Mendenhall drives up from Narragansett to get him out of bed. Mendenhall straps a belt under Earley's arms, stands on the bed behind him, lifts him by the belt and drops him into the wheelchair.
      Around 9 o'clock at night, Bob Zuck comes to put Earley to bed. Zuck has a different method: in his arms, as if Earley were a child, he lifts the 6-foot-tall man -- now down from 240 pounds to 150 -- and lays him on the bed.
      For the rest of the night, Earley is alone.
      He hates being subject to other people's schedules. He hates disrupting their lives. He hates the long helpless hours in bed.
      In Earley's eyes, each disability makes him "less of a person." He sees his illness stripping away the attributes that make him valuable to others, and the abilities that allow him to enjoy life.
      And yet he never seems sad. He smiles often, and cracks jokes about being "a gimp." Even as he complains that this is no way to live, he professes to have a good time "receiving" guests from his recliner, and to derive a sense of purpose from his fight to legalize assisted suicide. For all his talk about suicide, Earley shows a continuing enthusiasm for living.
      He holds up a hand. "My hand is ugly," he says. "It's very ugly now." The flesh of his palm is gone, the skin taut over the splayed tendons that hold his fingers.
      Pulling back the blanket draped over his legs, he shows his skinny immobilized calf, and palpates its now-soft flesh. "Soon I'll have only bone, no meat."
      He flashes a mischievous smile. "Don't let the cannibals get to me. They'll starve."

n his dreams, Earley walks. Death's approach has not brought nightmares or visions of the afterlife. But paralysis has brought endless dreams of movement. He can feel the movement in his legs: walking, running, leaping.
      Leaping over the white sands of the Long Island beaches of his childhood. In his dreams he relives that joyful moment -- that split second when a leaping child is airborne and time stops -- before his foot touches the ground again. Port Jefferson was a former whaling town, a small town. Children played in the cylindrical stone pits that whalers once used to boil down the blubber. And stuck their heads into the huge empty oil tanks and yelled, reveling in the racket of echoes.
      Earley has no memory of his mother, who died of cervical cancer when he was a baby. He speaks little of his father, who suffered from agoraphobia and died of a stroke in 1989, or of his older brother, Walter, with whom he has never gotten along. He adored his grandmother, who lived with them until he was about 10.
      As a teenager, he left home to live at friends' houses.
      And yet he describes his childhood as idyllic. He'd spend hours meandering along the green squiggle of the high-tide mark, collecting tiny shells and dodging the terns that would dive to peck his head. With his buddies he'd motor out to the harbor's mouth to catch blowfish, and dolphins would jostle the boat.
      His childhood friends remember him as smart, popular and talented -- he sang in the all-state choir; on the piano he could play from memory music he'd only just heard. One friend said that he looked big and tough but that people knew him as "poetic and charming."
      In high school he was labeled an "underachiever," and by most measures (though not, he insisted, his own) Earley would "underachieve" throughout life -- following such crooked paths that when asked his profession at the age of 47, he had no answer.
      The way Earley puts it, he followed everything to its logical conclusion, and then moved on to something else. "I have always followed the slant of my own inclination," he likes to say, and in the process, he says, he achieved his single lifetime goal: to become an interesting person.
      "When I wanted to go somewhere," he says, "I went. When I wanted to do something, I did it. . . .
      "I'm real happy with my life and how I turned out. I"m happy about the choices I made and the inclinations that led me around."

nstead of going to college after high school, Earley went to upstate New York, to travel and do odd jobs. But he was soon drafted into the Army, and served in Vietnam. He returned with a Bronze Star for valor, after rescuing three men from a downed helicopter; a Purple Heart, for a combat injury he always refused to discuss; and the more lasting psychic wound of post-traumatic-stress disorder.
      After discharge from the Army, Earley traveled abroad for a while. He went to college for a few months and he was married for a few months. He worked as a mechanic and a chef. No endeavor held his attention for long. The nightmares from Vietnam often made it impossible to sleep.
      One memory would always haunt him: A soldier was blown up, and pieces of him splattered on another's face -- all over his face, in his teeth. "That face, I will never forget that face. It was like something out of Bosch" -- the 15th-century painter of the grotesque.
      In 1979 Earley moved to Cambridge, Mass., where he founded one of the country's first day-care centers for people with Alzheimer's disease. But that went out of business after about three years. Later he earned a master's degree, got married and divorced again, painted houses, built housing for the elderly, worked at a hospital and earned a degree at the Community College of Rhode Island. At the time he became ill, December 1994, he was attending nursing school, but he quit when he could no longer do the clinical work.
      When he was healthy, friends say, Earley was an active, exuberant person, who loved working with his hands, loved -- as one put it -- "the physicality of things." He dug a huge garden outside the Connecticut house he once lived in. He helped his friend Bob Zuck build a greenhouse at his herb farm, in Lincoln. He'd throw his arms around you when he saw you.
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