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Posted by Dr. Sushrut Jangi May 13, 2013 07:00 AM
In the corridors of the hospital, doctors present cases to each other, leaving out patient names and personal details to focus on the medical facts. But sometimes, a patient's personality, his hobbies, pursuits, and dreams, are inseparable from the course and treatment of his illness.
Meet Chuck - he's 65 years old, a resolute Bostonian who has encountered waves of disease throughout his life. But most importantly, he's a fierce audiophile. "I've never met a man who loves music more than him," his music therapist at Mass General Hospital told me. When I spoke with Chuck, we explored two defining moments in his life - his falling in love with music - and then the emergence of his illness - episodes he remembers with an almost cinematic clarity.
"I was five," he says, impeccably remembering his first encounter with music. "Before school started, my mother would put Django Reinhardt on the phonograph." There were two songs he and his mother loved: Nuages, and Love's Melody. "They were beautiful songs," Chuck says, who listens to them even now.
Like many illnesses, music probably has a genetic component. Absolute (perfect) pitch, for example, tends to cluster in families, the way many diseases do. Two generations earlier, Chuck's maternal grandfather lived on an island off the coast of Portugal, where he played mandolin, the dobro, and banjo. He married a woman who quickly learned to accompany her husband on guitar. "Both my mother and father loved music too," Chuck tells me, painting a picture of a childhood home filled with sound and harmony.
When Chuck entered his early 20s, his tenure in one of Boston's law school was suddenly cut short. One day, when he was twenty-three, he ran to the bathroom in severe pain. Blood poured out into the toilet bowl. "When I looked at myself in the mirror, I looked ashen having lost so much blood." Soon after, Chuck was diagnosed with Crohn's disease, an inflammatory condition of the bowels, although doctors weren't sure whether he might have another related disease, called ulcerative colitis. He dropped out of law school to tackle his disease - but he doesn't remember those days painfully. "I had gone through Motown then, and soon after the Beatles arrived," he says. "I was impressed."
Throughout his thirties, Chuck struggled on and off with his inflammatory bowel disease. But eventually, after years of being on prednisone and other immune suppressants, his disease went quiet. "I had a colonoscopy in 2001. Everything looked great, and I thought maybe I had beat this thing." Aside from working in retail, Chuck had time to pursue music again. He amassed a collection of more than 6000 vinyls, browsing through the local shops in Cambridge and Boston, becoming a regular at Déjà Vu Records and Nuggets in Fenway. "I was looking for melody," he says, as though on a mission.
But starting in 2007, he noticed unusual changes. Once, while walking on the beach with his friend, he remembered being unable to keep up despite being previously active and in good shape. "I started needing a cane to walk, then two canes." Then, he started to lose vision in his left eye and his teeth were discovered to be severely damaged. Finally, in 2009, the bleeding began again.
What was happening to Chuck - and how might music play a role in his treatment?
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About the authorSushrut Jangi is an internist at Beth Israel Deaconess Medical Center and an editorial fellow at The New England Journal of Medicine. More »
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