In the spring of 1995, Maj. Randy Hebert went for a run with two fellow officers stationed at the Marine Corp Detachment in Fort Leonard Wood, an Army base stretched across the Missouri Ozarks. Just over a steep hill, the men paused for a water break. Back on the pavement, Randy’s legs suddenly felt like molten lead, barely able to maintain a shuffle. Until then, he had been trying to conceal how much his body was failing out from under him. He would wear a T-shirt and shorts into work, with the excuse that he was working out first thing. In truth, his hands had become too wilted to fasten buttons and zippers, so he couldn’t get dressed without another officer’s help. Within months, he would receive an official diagnosis of amyotrophic lateral sclerosis, or ALS, and given three years at most to live.
When I met Randy and his wife Kim, almost two decades after his death sentence, the fact that he was alive at all meant the doctors had erred on one key prediction. The Heberts still live in the house they bought in 1992, shortly after Hebert returned from the Gulf War, a block from the shimmering coastline in Emerald Isle, North Carolina. Entering their living room, I greeted Randy, now 55, but still as blond as he was in his youth. He sat in a motorized wheelchair that props up his head and neck. His motionless limbs have shrunken to little more than bone. Underneath him, a ventilator hisses and rumbles, forcing air in and out of his lungs. Only his eyes, blue and unblinking, remain fully mobile. They are how he communicates with the world around him, one letter at a time. I sent Randy a list of questions before my visit. He worked on the answers for 11 days.
Randy signed up for the Marine Corps his junior year of college at the University of South Carolina. They embodied a strength and discipline that appealed to him. By 1986, he was stationed at Camp LeJeune, just across the bridge from Emerald Isle. He fell in love with the town, the surf, and in 1988, a petite brunette with a silky Carolina drawl named Kim Sanford. During the move to Fort Leonard Wood in late 1994, he noticed his right hand wouldn’t grip as he tried lifting boxes. When he finally got a diagnosis of ALS the following October, he was angry — furious that his body would so utterly betray him. In the doctor’s office, he used his left hand to pick up his right, which by then he could barely close. “Doc, see this hand?” he said bitterly. “I will be back in 10 years to choke you with it.”
Unlike a spinal cord injury, which severs all connection between brain and muscle, other nerve cells remain. Randy can still feel the warmth of his wife’s hand in his own. He can feel the itch from a bug he can’t swat, and the searing of skin when someone unknowingly rams his wheelchair into a doorframe.
The Heberts are devoutly Christian, and both told me they could not have pulled through these years without their faith. Randy made certain I knew his favorite Scripture, from the 5th chapter of Romans, which assigns joy to suffering. (Because “suffering produces perseverance; perseverance, character; and character, hope.”) When I asked Hebert’s doctor what accounted for Randy’s longevity, he told me, “Randy has a real passion for living, and he’s got an amazing, amazing caregiver.” To this same question, Randy responded, “God made me a Marine: motivated and mentally tough.”
Early afternoon, Randy’s favorite time of day, we walked to the beach. He comes here every day. With the sun warming Randy’s face and the waves breaking, I asked how he felt. Peaceful, he spelled. “I used to run on the beach a lot,” he later wrote, “and I still do in my mind when I am down there and close my eyes.”
The Heberts hold fast to the belief that a cure for the disease will come, but Randy’s reached a place where he doesn’t obsess over being well again. It’s easy to feel heartbroken when you meet him, and hard to feel the same way when you leave. “I don’t really think about being a sad person because I am not,” he wrote to me. “I have a good life and I am doing what I have always wanted to do. Sit on the beach and chill. It just happened earlier than I expected.”