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People Top 5
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PEOPLE Top 5 are the most-viewed stories on the site over the past three days, updated every 60 minutes
- September 07, 1987
- Vol. 28
- No. 10
Despite the Shadow of His Father's (and Possibly His Own) Deadly Disease, a Folk Hero Celebrates Life
Guthrie inherited his penchant for transforming his generation's concerns and convictions into song from his legendary father, folksinger and songwriter Woody (This Land Is Your Land) Guthrie. But just at the time of his son's biggest musical achievement, Woody lay dying in a New York hospital, the victim of Huntington's disease, an unbeatable neuromuscular disorder that results in dementia and loss of body control. "He heard Alice's Restaurant before he died," says Arlo, "but I don't know if he could perceive how popular it was." Woody succumbed in October 1967, a month after Alice's Restaurant took off, leaving a legacy of music to the world—and one of fear to his children. Huntington's disease is hereditary; a victim's offspring have a 50 percent chance of developing the malady, usually between the ages of 35 and 45. Woody's mother had it, as did two of the three children from his first marriage, one of whom died in 1977.
Until recently, those at risk (it strikes 1 in 20,000 people) had no way of knowing if they were destined to inherit the ailment until it struck. Studies have shown that this terrifying uncertainty leads to a high rate of depression and behavior disorders among the potentially afflicted. Many put off marriage and even more forego child-bearing. Of those who are diagnosed as having the disease, 25 percent attempt suicide.
Last year a test was devised to determine whether a person will develop the disease; the test compares the subject's chromosomal matter with that of both healthy and afflicted family members. Although the procedure is relatively inexpensive and calls for just a few blood samples, few potential victims have taken advantage of it. It seems they simply do not want to know. Arlo, who turned 40 this past July, is among them, not because he couldn't live with the knowledge, he explains, but because he has lived fully without it. He is married, and he and his wife, Jackie, 43, have four children, Abe, 17, Cathy, 15, Annie, 11, and Sarah Lee, 8. The only thing that would change his mind would be if his brother, Joady, or sister, Nora (the three are the children from Woody's second marriage to Marjorie Mazia Greenblatt, a former Martha Graham dancer), wanted the information for tests of their own. So far, they don't.
Arlo and his brood live on a 250-acre farm in western Massachusetts that also serves as the headquarters of Arlo's recording company, Rising Son Records, and his quarterly newsletter, Rolling Blunder Review. It was there that he talked to correspondent Cable Neuhaus about living with the threat of Huntington's disease.
I was first told about Huntington's disease when I was 7 or 8 and my dad was diagnosed. My mother talked to us kids about it all the time. I think she was somewhat obsessed by it, to tell you the truth. She tried to make sure that we understood as much as was known then about the disease and what it was likely to do. We knew that my dad wasn't going to get better, but I don't know if we realized it would end in death. The disease itself is not fatal. It just makes your immune system and nervous system so weak that something else can kill you.
Before my dad got sick, he never thought he was going to get Huntington's disease, even though his mother died as a result of it. He mistakenly thought it could only be transmitted from mother to daughter. When the symptoms began to show up, he thought he had become an alcoholic and even joined Alcoholics Anonymous.
As kids, we couldn't understand what was really wrong with him, but you could see that he couldn't control his muscles. He would stagger when he walked, and he lost control of his arms. They would just fling out every once in a while. I felt uneasy sometimes because being in public with somebody who looks like he is drunk, wobbling around, can be embarrassing for a kid. But it was tough on us only in terms of how other people perceived us. Otherwise, our relationship seemed very normal. I never felt bad about my dad's sickness. When you're a kid, you just accept it. It's not like you have anything different to compare it to.
My dad was pretty much permanently hospitalized for the last 15 years of his life, and most of my recollections of him during that time are of him getting progressively worse. His speech was slurred, but because I grew up with him it was understandable to me. We were able to sing and talk with him up until the last two or three years. I could see his anger, though, when somebody didn't understand him. He wasn't angry at other people necessarily, just at the sickness itself. It was very frustrating for him.
My dad's friends and his doctors were very concerned about my brother, sister and me. It was, "Poor Joady, poor Nora. What are they going to do, living under this specter of doom?" Even now if I wake up and I don't feel quite right, everyone starts saying, "Oh God, Arlo's got it. He's going to die." I don't remember ever being overly concerned about getting the disease, and I'm still not. The doctors say I have a 50-50 chance of getting it. The way I look at it is I either have a 100 percent chance of having it or not having it.
Before I got married, out of a sense of obligation, I made Jackie aware of the scientific point of view, that if I get it all of our kids would have a 50-50 chance of getting it too. She didn't bat an eye. We decided that we were going to have a family anyway, and I remember when she was about to deliver one of our children, a doctor screamed at me, asking me how I could bring somebody into the world who may get sick and live this terrible, tortured life. I could never understand how you could be a doctor and be so stupid as to not know how valuable life is, whether you die in one year, or 10 or 100. My father had Huntington's, but he lived not just a joyful life, but an important one as well. And not just for himself, but for millions of other people. All the songs he wrote and all the songs I have written—except for the stupid ones—deal with the value of life, not with Huntington's.
It's been shown that if your parents have heart attacks, you are more likely to get them than other people; if your parents have diabetes, you are more likely to get that than other people. There is not a family in the world that isn't affected by the same kind of reality that Huntington's disease families have to face. Don't get me wrong, I would love for them to find a cure for Huntington's. It just isn't the most important thing in my life.
My mother was obsessed by it, though. She and my dad got divorced when he first got ill, but she still bore the responsibility of taking care of him. After he died, my mother dedicated her life to organizing the victims of Huntington's, helping people know what was ahead and what their options were. In 1967 she formed the Committee to Combat Huntington's Disease, which is now called the Huntington's Disease Association of America. I've been asked in the past by a variety of Huntington's organizations to raise money, to show up at meetings and let them use my songs and my face in their commercials, but I refused to do any of it. I'm happy to be a part of some of these things. I went to Farm Aid. I sang at the March of Dimes Telethon, and I would do it for Huntington's too if it weren't so closely associated with me. I don't want to be the poster boy for Huntington's disease.
There are a lot of people who are going to be offended by what I think, especially the medical profession, which wants everyone to be concerned about tests, but I don't think we need more dilemmas in this life. I heard about the test for Huntington's when it was first discovered. I haven't given it more than a millisecond of consideration. I am certain that I am not going to get Huntington's disease. More than that, though, is the alternate question I have to ask myself: So what if I have it? Am I going to do something different with my life? If you're going to do something different because you've found out you've got a disease, then you're not living as you should be.
I want to make sure that everybody understands that whether you have Huntington's or not, whether you have cancer or not, you have to learn who you are. You can enjoy being alive for however long you're alive. You shouldn't ever have to look over your shoulder and say, "I should have done something else."
All of my kids know what the family situation is. I haven't talked a whole lot about it, except when they have asked me. And that was only when they wanted to know how their grandfather died. The things I believe in do not require me to live a long life. I'm just glad I'm here. And I hope I've taught my children to be glad they're here, regardless of what happens.
- Cable Neuhaus.
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