”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.
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.
“You saw the pain on his face all the time,” Roosevelt says. “He said to me, ‘Aunt Carol, I wish I had my leg chopped off, because I could still go to shows, I could still play the guitar, still hang out with my friends. My friends have all left me because they think I am a hypochondriac.’”
His emails became increasingly despondent. Everything was gone: his guitars, his equipment, his records and his friends. All he did was take medicine and wait for bedtime, he wrote to his friend Vinita Joshi in England. “Not wearing earplugs ruined my life. I blame myself for everything.”
In the summer of 2006, DiEmilio landed a new job in New York for Scripps Network that, at least temporarily, brightened his outlook. He stayed with Chaiken in Harlem for a few weeks, then found his own apartment around the corner. And the move came with a bit of optimism: He had high hopes for one neurologist, then at Columbia University Medical Center. “He emailed me one day and was very excited to get an appointment,” Roosevelt says. Then she heard nothing. “Finally, he wrote to say, ‘He can’t do anything for me.’ I read that and felt like I was going to be sick.”
DiEmilio’s apartment was barren, barely furnished. “He was smoking a lot of pot because it helped dull some of the pain,” Chaiken says. “By the end, it was terrible, he just wasn’t really there. The look on his face was pain, like if someone had a tooth pulled. He didn’t want to be a burden. He was almost apologetic, like, ‘I’m sorry this is happening, this is all I can talk about.’”
In late October 2006, Chaiken phoned him, but got no answer, which wasn’t unusual. DiEmilio didn’t show up at work. On Halloween, Chaiken went to his door but couldn’t get in. He headed back home around the corner. Roosevelt and her husband drove up. “I remember hearing the sirens and I just kind of knew,” says Chaiken. “I said, I bet that’s for Jason.”
DiEmilio had erased almost everything from his computer, except for some music and information on his finances. His aunt found a plastic container with manila envelopes — he was so very neat — each labeled with the name of a different doctor. And the note, which read, in part:
I want to live and be happy. I did not want to die. But hyperacusis has completely destroyed my life. It is the sole reason as to my decision. I cannot continue to live with this. What happened to me doesn’t happen to people. The irony and the cruel joke of it all is completely unbelievable. I have spent the last six years in complete disbelief. All the things that made me happy now kill me. I suffer all the time. I’m tired. I’m tired of pain, and medication, and side effects and head pain and ear pain. I am tired of being trapped and imprisoned in my body. No one could ever possibly understand this thing that has happened to me and the utter despair, grief and sadness I feel all the time. There is never a good night, a good day, a good weekend, a good vacation. It is just torment. Every place I go is too loud. I can’t listen to music even at the lowest volume. It’s torture.
He signed off with a self-portrait:
Of the brutal and unforgiving auditory abnormalities that can result from noise exposure — other than garden-variety hearing loss, which is bad enough — the most common is tinnitus, or ringing in the ears. According to the American Tinnitus Association, around 50 million Americans, or 15% of the population, have experienced some form of tinnitus. Some people aren’t especially bothered; others become accustomed to the noise over time. But 2 million are so distressed by the screaming in their head, they can barely function. There’s no way to lessen the alien squall — just management techniques to mask it and coping mechanisms to deal with the resulting anguish.
Tinnitus’s nastier sibling, hyperacusis, is so under-recognized, it doesn’t even appear on the list of the nonprofit National Organization for Rare Disorders. At its worst, the threshold of hearing is the threshold of pain — if a sound is audible, it hurts. High squeals and low throbs tend to be the hardest to tolerate.
And that’s not all: There’s a bottomless pit of ever-worsening symptoms that include but are by no means limited to a weird thumping that feels like a fluttering insect or a flopping fish, the distortion of sound known as diplacusis, and a terrible thing called autophony, where you hear your voice echoing in your head.
Recognition of the dangers of noise — which are often mischaracterized and more far-reaching than previously assumed — is “dawning a little bit but doesn’t go beyond the research community so far,” says Jos Eggermont, a professor at the University of Calgary in Alberta, Canada. He was stunned when his research showed that exposure to low-level noise, in amounts not generally considered harmful, caused extensive damage in the auditory cortex.
Noise-induced hearing problems — where duration of exposure combines with intensity — can’t be accurately compared with a loss of vision, the kind where “your lenses don’t work as well,” he says. A more accurate comparison is with macular degeneration, where central vision blurs and darkens.
Typically, patients with noise-induced hearing problems are given an audiogram, which shows only whether they can hear a particular frequency at a particular volume. Results often show up as normal. “The audiogram is a terrible indicator of what is happening with your hearing,” says Eggermont, who objects to the medical community relying on these tests to divine meaningful conclusions.
Then, the patient with little or no measurable hearing loss (which is known in the field as “permanent threshold shift”) is brushed off and told everything is fine. Audiograms are used because “they are quick to do and easy to understand,” Eggermont says, allowing hearing loss to be quantified with a number, which is useful. (There is no actual measure for pain, after all, and not always a way to prove it exists.)
It’s commonly assumed that the ear recovers from excessive noise, the kind that causes temporary muffling or ringing. “We now know definitively that is not true,” says M. Charles Liberman, a professor of otology at Harvard Medical School, who also heads a hearing research lab at the Massachusetts Eye & Ear Infirmary. Exposure to noise — noise that was formerly considered non-damaging — causes massive degeneration of the cochlear nerve that progresses over time.
The ear is an organ of exquisite complexity, containing the three smallest bones of the body and two tiny muscles. When sound hits the eardrum, the vibration moves through the bones to the little round inner ear, or cochlea, which includes rows of delicate hair cells, called stereocilia. These hair cells send signals along the auditory nerve to the brain.
That’s the nutshell version. It’s impossible to actually reach inside the ear, which is encased deep within the temporal bone, the hardest bone in the body. “You can’t biopsy the inner ear,” Liberman says.
After loud noise exposure, “even if the hair cells recover” — the hair cells being the rows of stereocilia that respond to sound — “the nerve fibers that take the information to the brain don’t,” Liberman says, and the damage is insidious. “Even though the nerve fibers disconnect from the sensory cells very quickly, most of the fiber doesn’t die for months to years.”
The ability to recover from acoustic injury drops with increased exposure. “We don’t know why, but that fact is incontrovertible,” Liberman says. In other words, after the first concert, the muffling and ringing go away, and you’re fine. And the same after the second. But maybe the 20th concert is the one that breaks the camel’s back. “Noise risk is an incredibly complex equation.”
The vast interpersonal difference in susceptibility to noise damage could be due to a gene variant. Actually, it’s likely that numerous genes are involved, Liberman says. Attempts are underway to identify the susceptibility genes for noise-induced hearing loss, though it’s unclear whether this could help in identifying susceptibility to tinnitus or hyperacusis.
“You can have identical exposure and get absolutely huge differences in the amount of damage,” he says. “Tough” ears can withstand plenty of noise, while “tender” ears can withstand surprisingly little. The problem is that it’s impossible to tell, until it’s too late, who’s at risk.
One hypothesis about how noise can cause pain is that there are “stretch-sensitive fibers in the eardrum.” Another involves nerve fibers that run between ear and brain; most are covered in myelin, but there are also some unmyelinated sensory fibers that connect the cochlea’s outer hair cells to the brain. “We don’t have a clue what they do,” Liberman says. “One speculation is that they are actually auditory pain fibers.”
But ultimately, all these theories are just that. “We really don’t understand tinnitus and hyperacusis at all,” Liberman says. “We are so far from understanding that it’s not productive to make anybody think there’s an answer.”
DiEmilio wrote, “What happened to me doesn’t happen to people.”
This is not true. It happened to me.
My condition resulted from prolonged exposure to a workplace ventilation system — approximately as loud as a vacuum cleaner — but a common cause is loud music. (Personally, I probably wouldn’t have been able to tolerate an Azusa Plane show before my injury.) Concertgoers often believe that one concert wrecked their ears, failing to recognize the years of cumulative exposure that finally tipped them over the edge. Think of titration in chemistry class, where just one more drop turns the whole beaker purple.
I didn’t go the doctor route — unlike DiEmilio, I realized early on, when an audiologist I consulted had a squeaky door, that the medical field could only fail me. By the time I got to the ENT, I had done enough reading to know there was no explanation, no understanding, and no help.
It felt like my ears were being filled with burning acid, my ear canals were being scraped with sandpaper, and my eardrums were being poked inward with a blunt skewer. On a scale of severity from 1 to 10, I’d give the pain a 9, maybe a 9.5. One ear rang; the other chirped and cheeped. The sound of running water shot pain through my ears, as did the crackle of a newspaper. A horn on the street outside, through soundproof windows, felt like a kick in the gut. I felt like I had the flu for a year and a week.
The audiologist with the squeaky door, incredulous when I writhed in pain at a sound as soft as a whisper, discontinued the testing because I couldn’t tolerate it. “I learn something new from my patients every day,” he said. “I’ve never seen anyone as bad as you.”
I found myself giving things away, like people supposedly do before they die. When I took in the mail for my neighbor, who was out of town, I paid her credit card bills. I figured I wouldn’t need money. I’d be dead soon.
I spent six years cocooned in a quiet apartment. The baseline pain ratcheted down over the course of a year and then took another three years, maybe four, to resolve. Thankfully, the chirping and cheeping diminished, and the ringing lowered and softened. At some point, I noticed that birdsong on spring mornings no longer felt like a drill bit in my ear. The hyperacusis, though improved, remains — even still, even now, every sound above ordinary conversational level is alarmingly loud. My ears never feel normal.
Too much noise of any kind does it. I’ve read about a hardware-store clerk whose job was copying keys, a firefighter exposed to too many sirens, an Ohio State student who split his time between a lab with constantly whirring centrifuges and loud music shows; he wound up shooting himself. Half of returning troops subjected to sudden explosions return with ringing ears. The intense impulse noise of just one firecracker or airbag deployment can cause immediate and permanent hearing damage.
My case wasn’t necessarily typical — I had an instant catastrophic reaction, a sudden “event,” in medical parlance. I felt something break inside my head, a descending wave of pressure. From what I can tell, I am an outlier among outliers. The severity of my reaction was completely out of proportion to the relatively low intensity of my noise exposure.
Others have a more pernicious downward slide — low-grade ear symptoms that are hard to describe, often misdiagnosed as an ear infection or a jaw problem, that worsen with each noise insult. Each time, recovery is more difficult. Ears, devilish things, behave in astoundingly bizarre ways — they give no warning they’re about to break. Ears, like spinal cords, don’t heal well.
Symptoms sometimes resolve on their own, given enough of the tincture of time. In some cases, sound therapy works to increase tolerance. But it’s unclear that ears ever really recover. I know that I am one loud noise away from disaster. The three things I fear the most: dental work, air travel, and the NYPD’s new Rumbler siren that depends on the weaponization of noise, with a special frequency so penetrating, you feel it in your bones. I protect my ears in every situation of uncontrolled noise, lest years of improvement be eradicated in seconds. Yep, that’s me, with my industrial-strength earmuffs looking like the baggage handler. Those earmuffs saved my life.
“Noise-induced pain” is a term Bryan Pollard uses.
Only after he was exposed to a wood chipper did he realize those few loud hours would mean life-altering consequences. In his quest for treatment for the ensuing ear pain and hyperacusis, he was struck by how little was known even by the so-called experts in the field.
Pollard, an electrical engineer, founded a nonprofit called Hyperacusis Research. Last month in Baltimore, he was the first speaker ever on the topic of noise-induced ear pain at the annual meeting of the Association for Research in Otolaryngology. He is well enough to work and to travel, carefully limiting his noise exposure to stay below his pain threshold, using hearing protection when necessary.
The standard literature and questionnaires for assessing acoustic trauma don’t even use the word “pain,” Pollard says. “They use words like ‘annoyance,’ ‘irritation,’ ‘troubling,’ and ‘bothersome.’” It was clear to him that “you don’t really understand what we’re talking about here. We are not talking about sounds that bother me. We are talking about sounds that result in sustained, ongoing pain.”
Though pain and sensitivity often improve on their own over time, some people worsen when exposed to even everyday sounds. Earplugs aren’t always enough. It’s especially difficult to anticipate noise and to gauge how much is too much, because noise injury comes with a delayed reaction, like sunburn.
“How can they create working cures if they are not even adequately describing the problem?” Pollard says. “The model is that the cochlea doesn’t have a pain-producing mechanism. That doesn’t mean there aren’t alternative mechanisms.”
A normal ear experiences pain at around 120 decibels, which is approximately the volume of a landing airplane. At the threshold of pain, the point where noise transitions from uncomfortably loud to actively painful, what happens to a normal ear? And in a damaged ear, how does the threshold become lowered? The many doctors and researchers Pollard asked had never even entertained such questions.
They were similarly puzzled when he inquired about aural fullness, which, along with tinnitus, is a signature symptom of noise trauma. Patients are told that their problem is psychological, that they have a phobia of sound, that it’s impossible for ordinary sound to cause physical pain or for an ear to worsen so readily. “So many people would not have let their condition get so severe if there were adequate communication about sustained risk,” Pollard says.
At dinner during the otolaryngology meeting, some of the researchers were surprised that Pollard was wearing earplugs. The carpeted room had good acoustics, and the noise level wasn’t particularly high. They assumed he must be a severe case. Actually, no, he told them. Under the circumstances, he’s doing remarkably well.
Pollard knows dozens of people infinitely worse off. He intends to cultivate investigators who are open to new ideas. His nonprofit, along with the Hearing Health Foundation, recently awarded its first grant, $10,000, for a survey of literature, the first step toward further research. It’s likely, however, that most of the existing literature is dead wrong.
People sometimes ask, not surprisingly, how I met my husband. I tell them we met uncute, on a message board for people with catastrophic ear injuries — hyperacusis.net, the same message board where Jason DiEmilio posted.
I felt the way DiEmilio did about this group — validated and relieved that others understood, even if some of the discourse eventually proved conflicting and detrimental. I stopped participating there months ago — activity these days is low. I know a half-dozen people who were banned, and more who were driven away by the heavy-handed moderating and censoring of sentiments that were judged to be not positive or productive enough. (Worried, as we are, that this small but aggrieved group of victims may be losing its lone forum for commiserating and communicating freely with people who best understand, my husband is starting an alternative board at hyperacusisearpain.com.)
The tales filling the message board sounded frighteningly familiar. Many people stay home in isolation, sometimes losing or quitting their jobs. They mete out their sound exposure with care, paying a heavy price for misjudging. They experiment with all sorts of hearing-protection devices — earplugs, earmuffs, noise-canceling headphones. Some take strong drugs like morphine, Lyrica, and even the Fentanyl patch, which is typically used for terminal cancer patients, but these only partly control the pain.
Mild cases of noise injury apparently resolve on their own. Some people, even those with serious cases, do recover, or seem to. And then one bit of too much noise eradicates every shred of progress.
My not-yet husband emailed me because I was getting better and he was getting worse. He wanted to know my strategy. Time and silence, I told him.
For our first date three years ago, I scoured the neighborhood for a carpeted restaurant — a surprisingly difficult task in New York City — finally discovering an Indian place. We went for dinner early, when it would be empty. We managed with earplugs, though they are not always protective enough. One of the few other diners, a few tables away, kept sneezing. I winced every time.
Our tiny wedding, half a year later, was in a carpeted hotel meeting room, with no music. Everyone ate off paper plates.
The first thing on my husband’s medical chart, thick as a phone book, is “history of concertgoing.” He did what Jason DiEmilio, our blood brother, did — traipse from doctor to doctor in a futile quest for help. The doctors sent him for tests, pawned him off on other doctors, said he was depressed, stressed and anxiety-ridden. They suggested diagnoses as varied, and as wrong, as arthritis, migraine, and Asperger’s syndrome.
Some said he would be back seeing bands in no time. Others actually encouraged him to go to concerts, provided that he wear earplugs and stay far from the speakers. They insisted that ordinary noise couldn’t possibly harm him more than it could anyone else. He tried the same kind of sound therapy that DiEmilio tried. It increased his pain.
Having no choice, you adapt. Our apartment is quiet and carpeted, and we are there most of the time. We watch TV with remote in hand, ready to lower the volume if need be. We never raise our voices to each other. I try to limit the chance of all unnecessary noise, to the degree that such a thing is even possible. I even crocheted a jacket for our toothpaste pump in case it falls into the sink and a cover for the lamp’s pull chain so it doesn’t clank against the brass. Our doors never squeak. If it’s up to me, no doors ever squeak — I rarely leave the house without a can of WD-40.
Outside, in the racket of New York, you do what you must, like crossing the street if construction is ahead, and staying far from women with clicky-clacky heels. Yes, even with earmuffs on. Without them, almost no place is safe. The suburbs are filled with lawn-care hazards. The country has birds and wind. And by the time an unanticipated noise comes along, it’s too late to stick your fingers in your ears.
We endure. But I can’t and won’t sugarcoat the situation. If I drop a pot on the kitchen floor, I wonder whether I am contributing to my husband’s early death, or my own.
People have milestones in life — birthdays, anniversaries, vacations. Our milestones involve noise, our own growing list of black-swan events. The dental-drill incident. The ringing-phone incident. The slamming-door incident and, even more remarkable, the latching-door incident.
I don’t know how many doctors my husband went to; I stopped counting at 32. He also tried physical therapy, nutritional supplements, Botox, acupuncture, trigger-point injections, and weird things like trans-nasal lidocaine injections into the Eustachian tube. We’ve called a moratorium on trying to fix this hideous thing. Now, each month, he gets a pile of lifesaving prescriptions labeled “chronic intractable pain.”
Three years after noise killed Jason DiEmilio, noise killed Dietrich Hectors.
By this time, Facebook was thriving. So just before Hectors hung himself in the woods of his hometown near Antwerp, Belgium, he posted two lengthy suicide notes, in his native Dutch, on Facebook.
They were filled with detail after sickening detail about his downward slide. His death, at age 29, took a dozen years. After one concert, he wrote, “I saw people with earplugs and I laughed at them. I was so very cool.” But when the music began, “I felt the guitars and drums thundering in my ears. I was too stubborn to leave.” The next day, as his mother cleared the breakfast dishes, he felt sharp pain in his ears.
Later, there was a band rehearsal. A turbulent airplane flight. A concert he couldn’t resist. His audiologist told him earplugs were enough. They weren’t. “I want to emphasize that this is entirely my own fault,” Hectors wrote. “I have never been aware of the dangers.”
He was eager to have his story told, and to spread the word that damage from noise is largely preventable — if only people knew. The Flemish government has just released a short film called Ruis, Dutch for “noise,” to be shown to schoolchildren, based on Hectors’ final days. In his native Flanders, noise regulations have just gone into effect that limit volume at musical events, require posted warnings about noise damage, and make earplugs available.
The publication Flanders Today reported that the music industry is, of course, opposed to the laws, preferring to self-regulate than to be saddled with government standards.
In the U.S., although not-very-stringent industrial standards regulate workplace noise, none govern recreational noise. The debate over regulation of musical events — which already exists in some European nations — raises ticklish questions about whether musicians know, or care, how much they are disabling their fans, as well as whether concertgoers have any idea they are subjecting themselves to noise so hazardous it could maim them for life.
“Loudness is part of the pleasure, and its effects on hearing accepted, even celebrated, by fans and musicians alike,” writes British music scholar George McKay in his forthcoming book, Shakin’ All Over: Rock, Pop and Disability. He notes the perversity of a musical culture that is “irreversibly disabling,” with one characteristic of music-induced hearing problems being regret later in life.
A handful of lawsuits have been filed by concertgoers suffering from debilitating post-concert ear problems. In the U.S., they are usually dismissed. Participants assume the risk of recreational activities because, after all, concertgoers know that concerts are loud. It’s unclear, however, if anyone quite understands the enormity of the risk.
For some music fans, extreme volume isn’t just a matter of buyer beware, it’s the whole point. What’s more, because noise damage has so many contributing factors, it’s almost impossible to prove that one incident was responsible for harm. A 2003 suit against John Fogerty, however, in which the plaintiff suffered permanent unilateral hearing loss, was settled on appeal, but only after the sound engineer testified that the venue was indeed unreasonably loud.
Earlier this year, a disability discrimination suit was filed against a Manhattan nightclub by a hostess who was fired, having suffered hearing loss after working there for two years. In a unique injury case five years ago, an elderly Ohio woman sued after trying on a jacket in a mall; the anti-theft tag blared for several minutes as the clerk tried and failed to stop it. The customer left with temporary hyperacusis and permanent tinnitus. In New York — the city that now uses the Rumbler siren that stands to be the end of both me and my husband — the health department is in the early stages of developing a public education campaign to raise awareness about the safe use of “personal listening devices.”
Hectors improved somewhat with time and with medication. But after each relapse, it was harder to recover. He stayed in school, earning a Ph.D. in civil engineering, partly to avoid getting a job, which he feared would be intolerably loud.
The final, fatal dose of noise came during a friend’s bachelor party; he wore earplugs during dinner and fled after a brief stop at the karaoke bar. His ears burned with a white-hot pain.
I cannot talk right now because it hurts my ears. The tapping on the keyboard is painful. I can barely tolerate the hum of the computer. The physical pain of the ears is not comparable to other pains. Normally you can take a pill against it, but a pill does not help against this pain.
There is a constant feeling of pressure in my ears, like the feeling when you ride uphill-downhill in the car. If you get pressure in your ears, you swallow once and it’s gone. But I can swallow a million times and this pressure does not go away.
The impact on your life is phenomenal. I don’t have the strength to fight against it. I don’t want to live like a vegetable with such severe disability.I would like to have lived. But with this ailment my life is no longer enjoyable. I cannot communicate normally, I cannot work normally, my life has become a hell. Accept if you please that I’ve reached my limit. Every day is a nightmare for me.
Only when his family read his words did they realize the magnitude of his pain. “My mother said, ‘When life becomes your enemy, then death becomes your friend,’” his sister Hannelore Hectors tells me.
Her brother had one last wish: that his favorite song, “One” by Metallica, be played at his funeral. His family also unearthed some old recordings of him singing at a friend’s wedding. Afterward, Hannelore requested applause.
Now, her brother dead, she says, “He was finally able to bear it.”