How Marjorie Guthrie’s advocacy shaped today’s HD community
Woody Guthrie's wife was pivotal in driving early research and connections
“Love and peace.” — Marjorie Guthrie’s signature sign-off on letters and notes
Marjorie Guthrie was a dancer and teacher who started her own dance school. She also was the second wife of Woody Guthrie, an American singer-songwriter and visual artist who had Huntington’s disease (HD).
I know the pressure of living with Huntington’s and the emotional toll it takes on family and friends. The disease has affected several generations of my own family, taking the lives of my dad, grandfather, and great-grandmother. I tested negative last summer.
As Marjorie wrote in the introduction to “Finding Our Way,” her account of how HD affected her family, “I have been amazed at the uniqueness of each person’s experience, and then on reflection I see many similarities.” I’ve found this to be true as I learn more about how the disease affected Woody and his family.
Facing Huntington’s side by side
With Marjorie’s dancing background, her eyes were well trained to observe the body’s movements. According to the Marjorie Guthrie Project, the first time she observed symptoms of HD in her husband was in 1943, at Coney Island, New York. The project’s website notes, “It was walking along the boardwalk that Marjorie first notices signs of Huntington’s in Woody, as he pushed their baby’s stroller along the boardwalk. He had a hitch in his step and a lag in his manner even though he wasn’t drinking.”
Woody and Marjorie ended up having four children together, none of whom developed Huntington’s disease. However, two of Woody’s children from his first marriage inherited the disease, and both passed away at age 41.
Woody’s feelings toward his second wife are reflected in his song “She Came Along to Me,” which he dedicated to Marjorie. Lyrics include: “And some times the most lost and wasted/ Attract the most balanced and sane/ And the wild and the reckless take up/ With the clocked and the timed.”
Even after Marjorie and Woody divorced in 1953, she continued to supervise his hospital care until Woody died in 1967. She even taught him to communicate by blinking his eyes once his lack of muscle control made other forms of communication impossible. When my dad was at a care home, the staff and I helped him to communicate in a similar way.
The Huntington’s Disease Society of America (HDSA) notes on its website that, during the years she was caring for Woody, “Marjorie placed a small ad in a New York City newspaper and slowly gathered a determined handful of volunteers and HD families from across the United States.” The group gained momentum and eventually formed the Committee to Combat Huntington’s Disease (CCHD), a nonprofit voluntary health agency that was incorporated in the state of New York on Sept. 18, 1967.
Just weeks later, on Oct. 3, Woody succumbed to the disease. Marjorie had promised him that she would devote the rest of her life to finding answers about Huntington’s, and she did not disappoint.
An early HD advocate
Marjorie studied Huntington’s disease extensively. Her support, personal guidance, and knowledge helped to raise funding for medical research, increase education, and raise awareness. She served on federal and state government panels, assisted in multiple publications about Woody and Huntington’s, and even persuaded President Jimmy Carter to commission a study of HD and other neurological diseases.
She didn’t need a scientific background to be a successful advocate. As Marjorie once said, “It’s a long way from the world of dance to the world of health care. And yet, in another way, both depend primarily on communication.”
Marjorie died in 1983, just months before the CCHD became the HDSA and the genetic marker for HD was found. This discovery paved the way for the genetic test that’s available today.
As an advocate myself, I can appreciate how determined she must have been to fight back against the disease and make a difference in the lives of those affected. I’m familiar with the challenges of raising awareness, driving research, and supporting people in the HD community.
Marjorie was such a brave and strong woman, committed to finding answers and providing hope where there’d been none. The Marjorie Guthrie Project shares a quote from HDSA Chairman Samuel Bailey, who said, “Before Marjorie came on the scene, Huntingtons’ families had nothing. … Most of us didn’t know there were others out there struggling with the same problems. Marjorie brought us together. She showed us how to help ourselves.”
The Guthries have left an amazing legacy, with Marjorie’s ethos still evident in the HD community today.
Note: Huntington’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Huntington’s Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Huntington’s disease.
About the Author
Comments
David McDonagh
Great article Becky. The Guthrie family went through so much torment due to HD as do all families with it. Despite his HD Woody was a brilliant song writer and Bob Dylan was his fan. Lovely article, thank you.
Becky Field
Thank you, David! The Guthrie family certainly went through it, but what a legacy they left behind - Becky