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A Jazz Drummer’s Fight to Keep His Own Heart Beating

Milford Graves devoted himself to studying the rhythms of the heart. It turns out he was creating a technique to treat himself.

Milford Graves, who lives in Jamaica, Queens, has amyloid cardiomyopathy, sometimes called stiff heart syndrome. In 2018, he was told he had six months to live.Credit...Mark Christman

In the 1960s, Milford Graves became a groundbreaking drummer in avant-garde jazz, but intertwined with his career had been his constant study of music’s impact on the human heart.

Now Mr. Graves, a 78-year-old who lives in Jamaica, Queens, has become his own subject: He has amyloid cardiomyopathy, sometimes called stiff heart syndrome.

Doctors have informed him that the condition, also called cardiac amyloidosis, has no cure. When he received the diagnosis in 2018, he was told he had six months to live.

Since then, Mr. Graves said, he has come close to death several times because of fluid filling his lungs. His legs too weakened to walk, he remains in a recliner in his living room with a tube feeding medicine to his heart and another draining fluid from his midsection.

But he has hardly surrendered to the illness. Although he is under the care of a cardiologist, he is also treating himself with the alternative techniques he has spent decades researching.

Since the 1970s, Mr. Graves has studied the heartbeat as a source of rhythm and has maintained that recording musicians’ most prevalent heart rhythms and pitches, and then incorporating those sounds into their playing, would help them produce more personal music.

He also believes that heart problems can be helped by recording a patient’s unhealthy heart and musically tweaking it into a healthier rhythm to use as biofeedback.

In recent months, Mr. Graves has been listening constantly to his own heart with a stethoscope and monitoring it with an ultrasound device he bought on eBay.

“It turns out, I was studying the heart to prepare for treating myself,” he said.

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Mr. Graves playing the drums at a bookshop opening in 1965.Credit...Eddie Hausner/The New York Times

His diagnosis has only invigorated his research, musical explorations and creative output as a visual artist, said Mr. Graves, whose daily fight against the disease has become something of a performance art project.

He said he is rushing to further his research and organize it, so that it can be continued after his death by his students, who are fastidiously documenting and videotaping his daily activity, both for his archives and for an exhibition in September at the Institute of Contemporary Art in Philadelphia.

The show’s curator, Mark Christman, visits Mr. Graves and gathers his latest work, from sculptures to customized drums to new videos of Mr. Graves playing.

Mr. Graves has no idea how long he will live — “It could be three days, it could be a month,” or longer — but he is adamant that he will be strong enough to play live for the show, perhaps streamed from his recliner.

Where some might see cruel irony in being afflicted by heart disease, which he has studied for 45 years, he sees a challenge.

“It’s like some higher power saying, ‘OK, buddy, you wanted to study this, here you go,” he said. “Now the challenge is inside of me.”

He wonders if he has somehow “internalized” the subject of his study.

“I ask myself, ‘Why did I get something that, in my research, I’ve been trying to rectify?’” he said. “It’s a rare disease with very little research on it. The experts say there’s nothing to be done, so I have to look inward for answers.”

Mr. Graves has long said that a healthy heart beats with flexible, varying rhythms that respond to stimuli from the body. The rhythms, he said, bear similarities to some traditional Nigerian drumming styles, and he has fashioned some of his drumming approaches along these lines.

Because of the abnormal heartbeats caused by his disease, which stiffens the heart muscle and can lead to heart failure, what he hears now in his own heart is the “sound of survival,” he said.

It sounds less elastic and more plodding than before the diagnosis, he said, with a more metronomic regularity that he has called a rigid, unhealthy quality in a heartbeat.

He is practicing his biofeedback techniques by listening to his heart with a stethoscope and mimicking the rhythm and melody by singing and playing on a drum near his recliner. He also plays recordings of his own heart’s sounds on the drumhead with the help of electronic transducers, effectively turning the drumhead into a speaker.

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Mr. Graves believes that heart problems can be helped by recording a patient’s unhealthy heart and musically tweaking it into a healthier rhythm to use as biofeedback.Credit...George Etheredge for The New York Times

That has helped him come up with drumming techniques, including adjustments in drumhead tensions and new stick styles. It’s still drum practice, but with higher stakes.

Mr. Graves has seen a resurgence in popularity in recent years, with exhibitions of his art and research, festival performances and an acclaimed full-length documentary, “Milford Graves Full Mantis.”

“Instead of going into despair, his response was, ‘I’ve been asked to look deeper at this,’” said Jake Meginsky, the film’s co-director and a longtime assistant of Mr. Graves. “He’s surviving this prognosis, and through his creative process he’s offering us a record on what that survival is like.”

Mr. Graves approach is no surprise to those familiar with his unconventional life path.

He grew up in the South Jamaica housing projects and in the 1960s played with such avant-garde musicians as Cecil Taylor and Albert Ayler, with whom he performed at John Coltrane’s funeral in 1967. He turned down offers from Miles Davis to join Davis’s band.

In more recent years, he has also collaborated with the rocker Lou Reed, the pianist Jason Moran and the avant-garde saxophonist John Zorn.

Mr. Graves became a largely self-taught musician and scientific researcher, delving into herbal medicine, holistic healing, acupuncture, martial arts and other disciplines.

With only a high school diploma and minimal formal medical training, he taught music healing and drumming classes at Bennington College in Vermont for nearly 40 years before retiring in 2012.

He developed a martial-arts style modeled after the movements of the praying mantis and dance traditions from West African styles and the Lindy Hop.

“He did pretty much everything on his own, and it’s very important that his work continue, so he wants to leave everything in the right places with the right people,” his wife, Lois, said. “He knows he has more work to do and he’s going to get it done.”

Since 1970, Mr. and Ms. Graves have lived in a home in Queens that he has decorated with a Gaudíesque mosaic of stones and colored glass. The Graveses have turned the yard into a lush garden, dense with citrus trees, herbs and exotic plants. He converted a free-standing garage into an ornate temple that was often used as a dojo for martial arts.

But it is the basement where his heart research was mainly conducted. The space is packed with African idols, anatomical models, herbal extracts, African drums and a hodgepodge of heart-monitoring equipment displaying intricate electrocardiogram readouts.

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A sculpture at Mr. Graves’s home in Jamaica, Queens, which has been his laboratory for studying heart sounds.Credit...George Etheredge for The New York Times

Here, he said, he has treated students, neighbors and colleagues, and since 1990 has recorded perhaps 5,000 heartbeats. Mr. Graves created programs to analyze the heart’s rhythms and pitches caused by muscle and valve movement. He found ways to amplify the more obscure patterns and complex melody lines in the vibration frequencies underneath the basic thump-THUMP heartbeat, and use them for both musical and medical analysis.

In 2000, he received a Guggenheim grant to purchase heart-monitoring equipment. And in 2017, he co-patented technology for using heart melodies to regenerate stem cells.

Dr. Baruch Krauss, who teaches pediatrics at Harvard Medical School and is an emergency physician at Boston Children’s Hospital, said Mr. Graves’s work “has a lot of potential and possibility” if it were to be furthered in a clinical setting.

“There’s a lot there to be studied and used as a basis for further research,” said Dr. Krauss, who follows Mr. Graves’s work.

“He’s continuously inquisitive and creative and interested,” he added, “and this condition really hasn’t slowed him down.”

In his living room on a recent Sunday, one of Mr. Graves’s students, Peyton Pleninger, 24, helped him set up a device to play heart sounds and assisted him with making an assemblage for the art show.

“I don’t want to leave the planet with things undone,” Mr. Graves said.

Corey Kilgannon is a Metro reporter covering news and human interest stories. He was also part of the team that won the 2009 Pulitzer Prize for Breaking News. More about Corey Kilgannon

A version of this article appears in print on  , Section MB, Page 4 of the New York edition with the headline: Jazz Drummer Turns to an Inner Beat. Order Reprints | Today’s Paper | Subscribe

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