Authored by J. D. Rider and Kenilworth Rearabecoe Sekgapane

A nightmare in the midst of 2021 would make 30-year-old Kenilworth Sekgapane wish that he were never born.

“You know, if I knew these things were coming it would have been better to have never lived, because there’s nothing worse than being blotted out. Nothing worse than working all your life and building major dreams, and then these things demolish them as if they never were, and strip your means to stay alive, apart from staring at the wall. But that’s what these condition do.”

The conditions he’s referring to are known as loudness hyperacusis, pain hyperacusis, and tinnitus. Together they cause a nightmarish, aural evolution with the simplest of sounds.

“I hear a hundred times louder than I should (that’s loudness hyperacusis), with waves of burning/stabbing pain inside the ears/around the ears that come with daily noises—almost every decibel (that’s pain hyperacusis). It’s crippling, horrific pain that drops you to your knees. And then my ears will loudly ring with static, bells, and sirens—a cacophonous symphony (and that’s reactive tinnitus).

“These three will markedly worsen when I take in noises. Even with protection—the highest rated earplugs and earmuffs available—the damages are permanent. So I have to hide from everything—a feat that’s next to impossible when you realize how everything in life is tied into the soundscape. What is it that we do that isn’t sound-related?

“I fear I won’t survive this, because a peaceful relationship with noise is necessary to survive. These are some of the things I cannot do among an endless list of noises: Talking, even whispering; coughing or blowing my nose; flushing a toilet; cooking or using a microwave; bathing and brushing my teeth; listening to nature; rain and wind are no-nos. I just sit in my house with muffs on and listen to screaming tinnitus all day, and look at my phone like a hypnotized puppet. I can’t even read a book. The pages hurt to turn.

“The thought of being damned to hide inside my house for 40 years perhaps is too much to consider, at 30 now I’ll likely live to 70, and who in their right mind could do that?”

Fighting the hyperacusis pair for four total years now, Kenilworth explained that their aural violence had lain in wait for 27 years.

“I was born in 1994. Was only 27 when they crippled me.”

They came with zero warnings, stealthy and combustible, ready for their burning paths that wouldn’t ever go away. And once their fires went ablaze and wouldn’t let him have a life he saw the writing on the wall.

“I saw I was a marked man. That someday I will probably be forced to suicide, because my symptoms worsen more with every single week, because there is no remedy, no treatment to improve this, and doing what I have to do to still maintain my fragile life is still incurring injuries!”

He said that these conditions are like a pack of wolves attacking and murdering, and he was right for thinking that. They’re also like the evil pirates of popular culture, their swords in hand and pushing hard as Kenilworth morbidly teeters on the plank of a ship on the Caribbean Sea, its watery abyss prepared to swallow him.

He wishes for the past, and misses who he used to be. This artist and photographer—whose goals for a profound career were taken by these aural beasts—is living in the Free State, the quaint and lovely Kroonstad, a South African farming community that benefits from quietness because of small-town attributes. Although it’s mostly quiet there, its little waves of decibels are still a harsh, intruding force for Mr. Sekgapane. Even sheltered far away. But why this happens aurally is still a mystery unresolved (one that research needs to crack).

But how did this begin? Although a problem with his ears had come in 2016, it wasn’t the unremitting brute called hyperacusis—it was tinnitus. Yet its unexpected entrance was the omen of an enemy arising from a slumber, Kenilworth believes, and once that foe was wide awake his life would be in tatters.

“At first it wasn’t terrible . . . before the hyperacusis. It was mild tinnitus. One day I noticed ringing, which I presume had started from my heavy use of headphones, jamming music all the time—a slow burn buildup/consequence that spelled acoustic trauma. The classic-type of tinnitus you read about or hear about when talking to your family or your friends who just dismiss it—the ‘Oh, I have that problem, too; it ain’t so bad, though, Kenilworth, and quickly I got used to it.’ Well so did I as time progressed. The first few months it bothered me (as many who get tinnitus), but overtime I got along, habituating quite well, just as others tend to do when it’s not the reactive-type that climbs with normal noises or certain things you choose to eat, or different medications. And when it’s not a megaphone, it’s easy to ignore. It was quiet, thankfully, and it was only audible in silent rooms or late at night—when sounds recede or go away—because those sounds would cover it. So thus it didn’t bother me.”

Though on some days Kenilworth divulged that he would get unusual spikes that rose to louder levels, which did bother him, yet they were always transient, lasting minutes only. So they let him continue life, dragging them along. And dragging was the only option anyway since doctors couldn’t help.

“When my tinnitus began I went to see a doctor. He couldn’t help in any way. He said, ‘You’re stuck with tinnitus, and no one can help you get rid of it,’ though he didn’t warn of any risks from meds or sound exposures. I kept it stable through the years with only minor incidents, but then I saw another doc in 2021, since life got kind of stressful and my sleep was like a stranger. Things were really busy. It wasn’t ear-related. I got a medication, though, which helped me sleep and everything: a benzodiazepine. That was a mistake. So many people take a benzo with tinnitus and never have a problem. Why was I unlucky?”

For Kenilworth Sekgapane that was the year when luck succumbed to chaos, when tragedy prevailed, when terror became a manifestation of the world of the living rather than a gory film, when every single little thing that he had built/existed for became like ashes/residues, because of hyperacusis. He blamed the drug for starting it.

“While most get by when taking it without so much as getting scratched, others have reported hell—ototoxic side effects, I saw when digging deeper. You see, I was taking the drug in ignorance, as bear in mind I wasn’t aware of the scary magnitude in which these conditions can crush the folks who cross them, given how rare hyperacusis is, especially, and even reactive tinnitus. So also out of ignorance, once the drug had injured me I kept engaging daily life without the use of earplugs, protection via earmuffs, or both, as many utilize.”

That made his sound intolerance increase like fire spreading. He took the hits from noises, naked ears to violent sounds, pushing through their harsh attacks as chaos took the driver’s seat, and as the clock devoured time he sensed this unforgiving error, that something bad was going on. His ringing got more volatile, and so did hyperacusis.

The spikes became more frequent and they also lasted longer. So frantically Kenilworth decided to completely stop the benzodiazepine, and four days later his tinnitus became a brutal conflagration, a red-hot inferno rising up with every single sound. He didn’t taper it (perhaps that didn’t help).

He became routinely suicidal, the symptoms of his ringing worse and strongly uncontrollable. The same with hyperacusis. He went online to seek help, found a forum popular for those who suffer tinnitus, and interacted openly. He studied all things tinnitus, as well as hyperacusis, and other ear-related things.

However, the worst thing that Kenilworth had learned when searching through the info-heavy website was the cruel and unforgiving thing that every single sufferer detests, laments, and ridicules: THERE ARE NO TREATMENTS. Zero help. Giant eyes/a hanging mouth his long and silent countenance as he digested such a thing. It was futile, sickening, and shocking to this sufferer that he was damned to solitude.

“So I said, look, this is it. March of 2022 would be my sayonara.” He seized the dark unthinkable: attempting death by suicide, as he was trapped inside a pit whose grim alliance with the pain was just too strong, unmerciful, and he had had enough. The torture was too torturous, an unforgiving massacre, and something UNACCEPTABLE. “So yeah, I tried to pull the plug, as many would in such a case. Don’t kid yourselves or question that. People have their limits, right?”

Kenilworth was rushed to the nearest hospital, tasked with his recovery. (“To live in torture yet again,” he said of coming back to Earth.) In hindsight, he also expressed that part of him refused to think he’d suicide, that he was simply crying wolf, or bluffing, spewing BS, as many didn’t understand or care to understand, or didn’t try to lend support or show some love or empathy. Until that day, at least. But still it didn’t alter them—they thought he was a mental case, and not a person taking hits from sounds which struck as violent flames because of ear conditions, and raging/screaming tinnitus at levels otherworldly.

“I wish they would believe me. Is that so much to ask? Support matters, everyone. Even when a sufferer endures the most horrific stuff, support matters big time. Kindness, love, or empathy will go a long and cherished way. I never got those luxuries, as many with this illness don’t (the ones who just get shooed away). Between the sound hostilities that physically tortured me, paired with endless apathy of others as a given, I waved my heartfelt adios. But fate had other plans. Fate spared my existence.”

Fast forwarding a bit. The 16th of September 2024. From the time in which he tried to kill himself to now, this present age, Kenilworth described the state of his condition: “My hell has gone up at least sevenfold. Likely even more.” This fire’s rage is hideous, and its continued widening has been a thing unsolvable with daily/weekly/current trends, Kenilworth explained. “Yet it’s possible I worsened more because I couldn’t get away from noises in general.” The end of 2022 would see his ringing worsen more, and to this day it’s worsening.

This account is a cautionary tale and a form of education, teaching people unaware of these disgusting illnesses, and how they crush the Kenilworths who fall into their fire pits. They’ve turned his life to tragic soot, ashes of his former self dispersed with mourning center stage. He positively said, “I hope we can all work together to fight the wrath of tinnitus and hyperacusis. I hope and pray that not too far off in the future we get cures or treatments for tinnitus and hyperacusis, because I’m basically being forced to end my life.”

When push comes to shove Kenilworth fears he’ll fall into the sea, and watch the shrinking plank above as it moves back-and-forth through the lens of the ocean’s dark abyss. Death: the big eraser. He’ll think Well, this is it while holding dear to prayer.

Disclaimer

*While Hyperacusis Central does NOT condone suicide, we’re presenting the fact that many with this condition feel pushed to end their lives. It is the nature of the beast, and for educational purposes it is very necessary to communicate the devastating fallout that it does have for some. If you or anyone you know is in need of assistance due to suicidal thoughts, call or text 988 for the Suicide and Crisis Lifeline. You can also chat with 988lifeline.org. Or text MHA to 741741 for the Crisis Text Line. Or, for a comprehensive list pertaining to different countries, visit the following link: https://en.m.wikipedia.org/wiki/List_of_suicide_crisis_lines. It is important to remember that you’re not alone in this, and help, if sought upon, is there for your consolement.