Woody Guthrie’s Huntington’s disease progression is familiar to me
Accounts of the singer's illness bring back memories of my own family members
“Can they tell by looking at me how useless and weak and flimsy and [artificial] (and how foney) I feel?” — notes from Woody Guthrie, dated Aug. 21, 1952
Woody Guthrie was an American singer-songwriter and visual artist who was born in 1912 in Oklahoma. Though he inherited Huntington’s disease from his mother, Nora Belle Guthrie, he’s believed to have once said, “There’s no way I’m gonna get that disease.”
Huntington’s disease has affected several generations of my family, too, taking the lives of my dad, grandfather, and great-grandmother. I tested negative in the summer of 2023. Sadly, several of my family members mistakenly believed they had escaped the disease before and even during its onset. I wonder if Guthrie thought the same.
According to the article “Tracing Woody Guthrie and Huntington’s Disease,” published in 2001 in the journal Seminars in Neurology, by 1940, the singer had begun to distance himself from loved ones and “was often considered irresponsible, adolescent, even destructive.” By the late 1940s, he struggled with depression and alcohol abuse, which, for a time, somewhat masked his Huntington’s symptoms.
I have seen similar strange behaviors in my family members with Huntington’s disease. They seemed to be having a hard time coping with life in general, even prior to the onset of symptoms.
In June 1952, Guthrie voluntarily transferred from a detox center to Brooklyn State Hospital, in New York. At the time, little was known about Huntington’s. One of the only “treatments” available was electric shock therapy.
Guthrie later wrote a poem titled “No Help Known.” Its beginning reads: “Huntington’s Chorea/ Means there’s no help known/ In the science of medicine/ For me.”
The doctor who examined Guthrie at Brooklyn State in 1952 said, “This is one of those cases which stubbornly defies classification. In it, it has elements of schizophrenia, psychopathy and a psychoneurotic anxiety state, not to mention the mental and personality changes occurring in Huntington’s chorea, at this patient’s age.”
Guthrie made many notes during his time in the hospital. In August 1952, he wrote:
“Here’s my funny feeling over me again. … Shaky. Bad control. Out of control. Jumpy. Jerky. High tension. … No bodily (physical) pains; just like my arms and legs and hands and feet and my whole body belongs to somebody else and not to me; so ashamed of myself I want to run hide away where nobody can find me nor see how bad I feel. … Worse than this, I ask myself what makes me [break my head] to try to hide my weak jitters? … My trouble isn’t in the dizzy spell nor the pains not in my [weakly] feeling, but my worst pains come because I spend every drop of my bodily strength trying to hide my trouble away so you can’t see it; trying to keep you from reading it in my face, or my eyes, or in any words I’d say or in that stumbly way I walk around.”
I’m reminded of my dad, who would apologize to people for repeating himself, being clumsy, or stumbling around. “I have Huntington’s,” he’d say, as if he was embarrassed and felt the need to explain.
Guthrie’s continued decline
Over the next few years, Guthrie was in and out of the hospital. After discharging himself on May 23, 1956, he was arrested the next day for wandering on the highway. The court determined he was insane, citing a lack of insight and judgment, grandiose ideas, and an untidy and unkempt appearance.
Self-neglect was common among my family members early in their illness, as they began to look more untidy. I also noticed a lack of judgment, with some of their finances spiraling out of control.
On Aug. 4, 1956, a doctor at Greystone Park Psychiatric Hospital, in New Jersey, diagnosed Guthrie with “schizophrenic reaction, paranoid type.” On Jan. 8, 1957, medical staff changed the diagnosis to “Huntington’s chorea with psychotic reaction.”
Guthrie continued to deteriorate, and by 1965, he couldn’t speak at all. He’d lost the ability to play his beloved guitar, type, or hold a pen. For a while, he communicated by pointing at flashcards his wife had made, but eventually, all he could do was blink his eyes.
I believe my dad still understood us in the later stages of his disease, blinking his eyes and making noises while trapped inside his own failing body. His intelligence seemed to still be intact.
Guthrie died on Oct. 3, 1967, at Creedmoor State Hospital in Queens, New York.
His wife, Marjorie Guthrie, and at least one of his doctors pondered whether Huntington’s disease had actually driven Guthrie’s creativity. As areas of his brain became damaged, was his brain forced to rewire itself, enhancing his creativity? No one knows the answer to that, but one thing is for sure: Guthrie left a lasting legacy, with a body of music still appreciated today.
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