No one would believe it: a world where every sound hurts, every day belongs to pain, and every dream becomes translucent, out of reach and dead. Like the flames of time extinguished, they lose their shine and burn no more, fading in a plume of smoke. It sounds absurd, this world. It reeks of lies and tales, but it’s all too true, I’m afraid, all too real for its inhabitants. They suffer and they suffer big. Some suffered and lost the fight, like Dietrich Hectors, a victim of this rare condition, hyperacusis.
He was only 29 years old when he took his life, a young man eager to live but beset by tragedy. His hopes, goals, hobbies, passions… all wiped out by this condition. He suffered most from a subset of hyperacusis, known as noxacusis, where a decreased tolerance to sound induces pain, and what it does to a person’s life redefines the limits of horror. He faced a hellish landscape beyond recognition, a land so foreign that it crushed his soul and left him helpless. Why he chose to die — why he lost his life at all — can be better understood when you truly know noxacusis, the merciless thief and murderer it is. Hectors was a victim of its all-consuming wrath.
When it’s severe, pain from almost every noise — big or small — is a very real possibility, like sharp, stabbing jolts in the inner ear, burning or aches, or the sensation of razor-wire dragging and tearing through the ear (with almost every noise in life). Some get pain that’s immediate when hearing a sound, then it subsides; for others, it’s delayed and lasts for days or weeks, and sometimes people experience both sensations.
For those who suffer, the sounds that trigger these symptoms will surprise many. Conversations hurt, even the sufferer’s own voice. The A/C or furnace is too much to bear. The kitchen becomes a red zone. Clanking silverware, a fridge, a sink with running water, a microwave… they’re all too loud. Trying to take a shower becomes a high-stakes mission. Those who suffer severely can permanently worsen just from that. Venturing to the outside world is an even greater feat. Driving a car is risky, even with protection, like earplugs and muffs. When someone has extreme noxacusis, protection is not always reliable, depending on the situation, of course. So going outside is mostly off limits. A bird singing or a neighbor cutting grass is too much. And in public places, random noises happen and there’s no way to control them, so that will sway most to err on the side of caution and avoid going out. It’s just too risky. So with noxacusis, as you can imagine, the realm of the living emulates the dead, as life becomes cold and lifeless.
Faced with the horror of horrors, these people are forced to isolate themselves. Relationships are severed; they can’t see loved ones or friends. They can’t perform the most basic things in life since sounds are everywhere. Like shadows casted east to west, there’s no avoiding them. This is something most don’t realize until their hearing runs amok. Every note, tone, and bad vibration rattles the cage constantly… intrudes into their fragile ears like uninvited guests. It’s all just noise bastardized. Sound is a pillar of existence. It has no bounds and does its thing, but when things go wrong — terribly wrong — you’re intensely aware of its presence. When it turns on you, becomes a foe, a hostile and oppressive force, it sends your world reeling, and molds it into utter chaos. For the sufferer, life as they knew it is dead and life as they know it is not sustainable, physically or emotionally. It’s no longer a disability at this point — it’s incompatibility. The loss that follows is unbearable and affects a person’s mental health, and every aspect of their life. Often, they’re not even comfortable in their own home; they have to protect there, too. No safe havens are guaranteed. The ambient sounds from the outside world — rain, traffic, weather events — penetrate the walls like nothing’s there, causing pain again and again, and heartache and despair.
The onset of this problem can be triggered by noise levels that are dangerous or medications that are toxic to the auditory system. While it’s clear that ear damage is the trigger, the anatomical mechanisms at play are still the subject of debate. Research hasn’t solved that puzzle yet. Some believe it’s nerve damage, middle ear or cochlear, or an issue with the brain itself. It’s possible that several of those factors are involved, a network of problems that enable hyperacusis and its subsets.
There are theories for why these symptoms occur in some people and not others. Two people can be exposed to the same environment, yet one develops hyperacusis and the other doesn’t. Some argue that damage is likely cumulative and a person will get this condition when they reach a “final straw” moment. However, it has also been noted that many will abuse their ears continually in life, frequenting concerts and taking medications, going beyond the threshold that tanked a sufferer, but still remain okay somehow, free of ear dysfunction. So questions still remain. The mystery’s in the tall grass, so to speak… buried and out of sight.
Perhaps genes are involved or a preconceived likelihood of developing the problem, but how it affects each individual varies widely. Some get loudness hyperacusis, an increased sensitivity to sound. Some get noxacusis, the painful subset. Some get both. And many get ear ringing, too (tinnitus). Dietrich Hectors had all of it. Some get better with time, as if the body heals. Some don’t, though. Some get worse more and more, like Hectors.
Sadly, he was enslaved to noxacusis, where it robbed him of joy and peace, life’s beauties and treasures, the relationships he held so dear, the career goals, and a future that once held promise. It’s hard to fathom such a place. Until you’re plunged into its madness, the terror of that world is unimaginable, and the damage it brings… unrelenting. It’s a hostile war, really… a soup of doom and paradox, which pits you against this sacred life. Imagine the fear of such a plight, the struggles and limits that take control, the claustrophobia that ensues, the trauma that bakes into your essence, and leaves your mind bloodied and battered… where every sound hurts and makes you worse, sometimes permanently. What a nightmare. And that’s what happened to Hectors, where he saw the walls closing in, felt the quicksand sucking his feet, and lost the will to live. It’s hell on earth, truly. He couldn’t see a clear path forward, felt he couldn’t survive, felt destroyed and misunderstood, as most just can’t relate. No wonder he lost the fight.
It’s such a rare condition. Out of 1 million people, it’s estimated that only 10 or 20 will get hyperacusis, and only a few will reach a severe stage. It’s so rare that even doctors can’t help. You’re often met with disbelief when trying to seek help, which adds insult to injury. Most have never heard of it and are quick to say it’s psychological. It’s a common theme to be dismissed, even from those closest to you. That further promotes the isolation that weighs so heavily on the soul. You’re truly alone in the world, like an ill-matched victim who cannot fight… “allergic” to almost every sound. It’s overwhelming. And for people like Hectors, despite their efforts to persevere, to heal and overcome, the “demon” takes control… this noxacusis.
When it comes to health problems, there are different grades of demons: lightweights, heavyweights; those who tyrannize; some strong, some manipulative; some heavy-handed and quite oppressive. They’ll eat you for breakfast, lunch, and dinner, then throw you up for second helpings. Some are just too powerful and devour your life to the core, leaving nothing unclaimed, as they nibble away at every facet until there’s nothing left to touch. Hectors met one of those demons, unfortunately, with severe noxacusis.
He suffered so long in life. He was first introduced to the world of ear problems in 1996, as a young teenager. After a concert, he noticed his ears were ringing loud and hyperacusis came shortly after. His symptoms improved within a month and he tried to resume a normal life. He enjoyed music, loved going to concerts, and played a lot of instruments. He loved being social and frequented environments that were known to play his favorite songs. But setbacks continued to plague his life as his condition worsened more and more. He wrote a farewell letter to recount his story and explain the tragedy.
The circumstances surrounding his death are especially sad, too, because he had no viable treatments to turn to. Hyperacusis and its subsets are grossly underfunded. They receive almost no funding for research and treatments compared to other diseases/disorders. And that needs to change, going forward, so that people have options rather than feeling like their lives are over. Dietrich Hectors deserved better from this world, but his symptoms became so profound that he chose to die. In this state, when the symptoms are extreme, the sufferer is faced with eviction from the planet, essentially, or settling for a life of absolute seclusion, hidden away in a soundproof “box,” never to be seen again. That’s the sad reality. Some never get better and lose their lives, and are stuck in a state of limbo, a paradox, a balancing act between 2 worlds — pain and loneliness. They can’t live and can’t die either, unless they do it, of course… pull the plug, that is. And that’s the dismal promise: no matter how bad the symptoms get, they’ll never take the person’s life; they have no bearing on mortality. Only the person can make that happen. It’s a tragic tale we wish on no one.