posted on March 14, 2013 at 10:30pm EDT
"Every sound hurts my ears," Jason DiEmilio wrote just before washing down dozens of hoarded pills with beer in the bathtub of his Harlem apartment in October 2006. "The sound of flipping this page is too loud for me. It sends pain through my ears and brain."
DiEmilio, 36 when he took his life, was the victim of a rare acoustic trauma called hyperacusis, which flip-flops the usual effects of excessive noise by grossly intensifying the loudness of sound rather than causing hearing loss. Researchers who have dedicated their lives to studying the vast and unique intricacies of the ear have no idea what causes this or how to relieve it. DiEmilio is not the first — or the last — to suffer this bizarre malady, but given his symptoms, the way they materialized, and the way he coped with them and the way he didn't, he may as well have been patient zero.
For DiEmilio, this entailed withstanding a roasted-alive kind of torture, overcome by a gradual accretion of toxic noise that submerged him for years in intractable pain so severe and debilitating that death was preferable. The irony was not lost on him — between 1996 and 2001, he released four atonal, ambient drone-rock albums and a handful of singles and EPs under the name Azusa Plane
. He reveled in abrasive, confrontational cacophony.
"Oh my gosh, it's so loud, just banging, and Jason would put his head inside the drum during the act," says DiEmilio's aunt, Carol Roosevelt, who, along with his grandparents, reared him in suburban Philadelphia.
"It sounded like an airplane landing," says his friend Michael Chaiken.
Source: Courtesy of Barbra DiEmilioJason DiEmilio onstage with Azusa Plane in his usual uniform, a white T-shirt and wide-wale corduroys.
After one show, DiEmilio started complaining he couldn't hear properly. His ears rang, but the ringing always went away, until one day it didn't. He complained of an unpleasant fullness, a pressure in his ears. He later joined a more traditional rock band, Mazarin, and while playing with them during a European tour in early 2002, he felt something happen inside his ear — something pulled, or snapped, or broke. Within two years, DiEmilio was wearing earplugs to buffer the pain, which he described as knives or screwdrivers stabbing his ears. Soon, it was difficult to listen to music at all.
There were so many doctors, so many — none of whom found anything wrong. He saw ear-nose-throat doctors, neurologists, audiologists, psychiatrists, dentists. He underwent MRIs (jarringly loud themselves), scans, blood tests. He was given a mouth guard for his jaw. He tried sound therapy, which involved listening to soothing, low-volume noise. He found brief relief with acupuncture and painkillers, but improvement never lasted, and the confusion and skepticism of the medical community added insult.
"Could I have a traumatic brain injury from playing loud music in a band?" he wrote on the message board of the Hyperacusis Network
five months before his death. There, he found people who were similarly afflicted and felt, at last, that he wasn't alone and wasn't crazy. Except that his condition was worse than most.
"This is a pain you cannot see," Roosevelt says. "Even my sons would say to me, 'We don't understand why you have to go to the doctors with him, you baby him, he's just depressed.' My older son cannot to this day forgive himself for ever saying anything negative."
By fall 2003, DiEmilio was taking a lot of medication and working at a cable channel in Philadelphia. He moved into the basement of his aunt and uncle's house, eating separately from the family to avoid the clatter of dishes. The Roosevelts lent him a car so he wouldn't have to take the train. He wore custom earplugs to work. ("We found so many earplugs when he passed, and they would come in little bags, two in a bag," Roosevelt says.) She often accompanied him to the doctor to ask questions and take notes. "When they said, 'There is nothing wrong with you,'" — and they always did — "he would lose it, he would zone out," she says.
DiEmilio had trouble talking on the phone and typing on the computer. He took pills to sleep through the pain and his ringing ears. At last, he gave away or sold his music and his DJ equipment; his beloved Fender guitar went to his cousin Meghan.