For a Family Facing Incurable Huntington's Disease, Finding Out Is Better Than the Dread of Suspicion
updated 11/05/1990 AT 01:00 AM EST
•originally published 11/05/1990 AT 01:00 AM EST
Huntington's is an incurable neurological disease that destroys brain cells. It is transmitted genetically. The chances are 50-50 that the gene carrying the disease will be passed from a Huntington's carrier to his or her offspring. Symptoms of the disease include involuntary jerking of the limbs, a drunkenlike gait, loss of memory, slurred speech and erratic, irritable, sometimes aggressive behavior. Most victims of the disease die within 20 years of the time it first appears.
Because the symptoms usually do not show up until middle age, potential victims often lead lives of tormented uncertainty. But in 1986, a genetic test was developed enabling people to tell whether or not they have escaped the tainted gene. To date only about 200 of the 125,000 persons at risk have taken the test. One of the reasons may be that many people would rather remain in doubt than take the chance of learning they have so devastating a condition. Some may also fear that Huntington's would stigmatize them and make it impossible to obtain health insurance. Still others may be deterred by time, financial and family considerations. Testing centers require about three months of psychological counseling before the test itself is administered. Fees and expenses can easily reach $5,000, and family members must be available for examinations and blood samples.
Huntington's had run rampant in the Hayes family, who lived in southern California. Skip's grandfather, an aunt and an uncle all died from it. Other relatives with Huntington's are being cared for in state hospitals. His mother, Billie Catherine Hayes, 61, is confined to a nursing home. Skip, his sister and two of his brothers decided to end their doubts.
Catherine Hayes, 36, a disability consultant from Macon, Mo., learned from a radio report in 1983 that a test was being developed. "I started shaking and crying and got all upset," she recalls. "I had been living all my life as if I had it. If the gene was in my body, I wanted to know." In 1987, a year after the test became available in an experimental program at Baltimore's Johns Hopkins University, she and Skip look it. Later, Billy Hayes, 35, a sales representative, and Marty, 32, a machinist, also had themselves screened. (Two other brothers thus far have declined the genetic analysis.) Catherine and Billy found that they had been spared the disease; Skip and Marty had their worst fears confirmed: They have Huntington's.
The ordeal of discovery has brought the siblings—one of the largest families to take the test at Johns Hopkins—closer together. "We are still scattered all over the country," says Catherine. "But I've probably seen more of my family in the past couple of years because of this." Billy and Catherine, given a reprieve, have been able to get on with their lives, entertain thoughts of marriage and, for the first time, children. Catherine has become a vice president of the Huntington's Disease Society of America.
Skip's and Marty's reactions have naturally been more complex. "When they told me I had Huntington's, it slapped me in the face," says Marty. "It made me take a look at where I am at and what I have been doing." Handsome, intense, Marty is reticent about his troubled life, but it is clear that he once seemed bound for success. At 21 he was making $32,000 a year working on oil rigs in California, which enabled him to buy a town house and a four-wheel-drive vehicle. Then, seven years ago, shortly after graduation from a Bible school in California, his life spiraled out of control. He and his wife divorced, and in 1987 he spent 210 days in jail for drunken driving. Yet Marty insists that learning he has Huntington's has inspired him to retrieve his life from chaos. "Now." he says, "I want to get back to being responsible again, get to where I can see my two kids and live a normal life again."
Skip, too, has children—Jason, 15, and Jennifer, 13—and so his diagnosis carries a special anguish. "It has laid heavy on me to look at them and think that one of them, or even both of them, will wind up with it," he says. "That hurts more than anything." Jason cried when he was told about his father's condition, while Jennifer, who is very close to her father, "closed up like a clam. She never cried, never showed any emotion," says her mother, Denise. Huntington's centers—there are now some 20 in the U.S.—insist that people at risk decide for themselves about testing. The children must wait until they are at least 18 before they can learn whether they carry the gene.
Skip is glad he took the test. "It gives you the ability to play offensively instead of fielding what comes at you," he says. He considers himself a survivor, with good reason. The day after his 17th birthday he enlisted in the Marines; 10 months later he was sent to Vietnam. "I have been in ambushes, pinned to the ground with 50-cal. slugs going over my head and overrun by suicide squads," he says. His best friend was killed when a personnel carrier in which he was riding hit a land mine.
In 1967, when Skip returned to the U.S., he was greeted with cries of "Murderer" and "Child killer." He joined a counterculture community in San Francisco, only to get caught up in its drug culture. He became a heroin addict and then a drug dealer to support his habit. Moving to the South, he was imprisoned in Lousiana for selling LSD in 1970. There, however, he underwent a jailhouse conversion and, upon his release, enrolled in Liberty Christian College in Pensacola, Fla. He was working at a nearby drug-abuse center when he met Denise, who was visiting another employee there. "Denise really loved me, and love hadn't been much a part of my life," says Skip. They were married in 1974. After that he worked as a petroleum surveyor until March 1989, when he became the interim pastor of Mobile's Bay View Church. He is now pastor of the city's Jubilee Fellowship Church.
Skip has dealt with his plight in characteristic, head-on fashion. Overwhelmed and depressed, he decided to commit himself to a VA hospital for psychiatric patients in Gulfport, Miss. At first the hospital wanted to treat him as an outpatient, but he put up such a fuss he was finally admitted. During his five-week stay, he slept in a dorm crammed with 70 people, some of whom were deranged. "At night you don't rest," says Skip, "because you don't know whom you can trust." While his VA physician conferred by phone with doctors at Johns Hopkins to adjust Skip's medication, he was also treated for gall bladder problems that had gone unattended because he lacked insurance. "Now," says Skip, "I am back in working order."
Professionally, Skip has thrived since emerging from the hospital, basking in the warm support of his congregation. "There are a lot of elderly ladies who just love him," says Denise. "Skip has mamas everywhere." For his part, the pastor says he is determined not to let the disease "control my life." A gun enthusiast, he says that he is still a crack shot, although he admits that nowadays his hands shake. "My arms jump, and I keep my hands on the table when I talk to people," he says. "But I want people to know that Huntington's does not have to totally destroy your life. I have peace in my heart, and I really believe that with God everything is possible. I want to keep going as long as I can," he adds. "I hope it is forever."
—Giovanna Breu in Baltimore and Mobile