Searching for silence
Greetings Debriefers,
Can you hear it? kuhdrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr…
I write to you, every sentence interrupted by this noise, seemingly growing louder with every keystroke.
As someone who has been hard of hearing since I was 9 years old, silence has long been one of my dearest companions. But over the past months it has abandoned me, to the point I’ve started to forget what it sounds like.
On August 14th 2024, noises abruptly entered my head, a tinnitus resulting from progressive sensorineural hearing loss.
I named them Cerberus, after the three-headed dog. In Greek mythology, Cerberus guards the gates of hell, to keep the dead in and the living out. For me, he keeps the noise in and silence out.
Since that day in 2024 I’ve been on an unending search, consumed by research and home remedies, ironically sobered by alcohol and meds. All this in Trinidad and Tobago, a country that hardly recognises disability accessibility.
And my search for silence has thrust me even further into an unforgiving world of unwelcome sound.
About this edition
Tharā Gabriel is a hard of hearing administration and communications professional from the southernmost Caribbean island, Trinidad and Tobago.
Kinanty Andini is an illustrator and digital artist from Indonesia.
The Debrief publishes disabled stories, told in our own words, thanks to support from readers.
Indifferent to sound
Up until the age of nine I had what hearies would refer to as “normal” hearing. Then at the end of my primary school years I was granted the hereditary gift of progressive sensorineural hearing loss.
My world slowly began to change. In my specific case, I was “treble deaf”, meaning I could…
crweeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeee…
… not hear higher frequencies but could easily hear very low frequencies. Although I could already read lips, conversations became much harder to follow and what I can now term “social regression” slowly began to ensue.
Familial interactions were the easiest, along with the upkeep of a few choice friends whose voices happened to be on a reasonable frequency. In retrospect, this is probably why I engaged with so many male friends rather than females – they were a lot easier to understand. (Take note mother…it was not predominantly for any unsavoury reasons *side eye*)
This was basically my life until the end of my teenage years – adaptation. Learning sign language was not practical and purchasing hearing aids even less so.
I was indifferent to sound as others heard it; a firm believer that I wasn’t missing out on anything and that I would go merrily along my life without ever choosing to “hear” more than I could.
Turning off my ears
One added benefit of my hard of hearing life has always been controlled peace – I like to refer to it as turning off my ears. I can simply look away and stop concentrating.
kyeeaow! kyeeaow! kyeeaow! kyeeaow! kyeeaow!...
Every Deaf and hard of hearing person knows how tiring social and professional interactions are. Our brains have to work much harder to process information, causing mental and physical exhaustion.
At times we become so fatigued, just concentrating to formulate a simple response is unbearable. In professional settings there is less of a choice, so I usually concentrated until it turned into a migraine, and then maybe I popped a pill.
And then I could turn off my ears. Or I used to be able to.
Every sound a fresh assault
I had a short stint with some cheap hearing aids during my BSc at University. I detested them, and not being able to escape was a huge reason for that.
Every sound was electronic and buzzy. I could not turn away from a spirited conversation, a door slamming or a desk closing with these scratchy implements buried in my ear canal. Cover my ears and cue the high-pitched feedback!
Mosquitoes swarming, water running, pages turning, feet shuffling, every sound a fresh assault on my unaccustomed brain. I could not process these new noises in time to understand them before needing to respond. Sound was simply a distraction that prevented me from “hearing” the way I did without those godforsaken aids.
Lip-reading and winging it
I swore off the hearing aids and dedicated myself to a life of “lip-reading and winging it”.
To put things in perspective, based on my most recent audiogram, if you played me a voice recording, I’d hear and understand only 20% of what you’ve said.
But if you faced me and I read your lips, I’d hear and understand from 60% even up to 100% of what you’ve said.
How could I take phone calls? Through voice matching an individual’s accent, voice tone, and frequency to my own understanding of what specific words sound like. I rummage through my mental filing cabinet of sound memories, contextualise the conversation, and activate rapid sound processing…all within a matter of seconds.
A not-so-silent partner
But remember that pesky little word “progressive” I mentioned earlier? Well, it turns out it has a lesser-known partner called TINNITUS.
If you take a look at my historical audiograms, you’d notice…
heeleelee heeleeloo heeleelee heeleeloo heeleelee heeleelooooooo
… the reading looks like a disc slowly sinking in water and… it’s almost at the bottom.
I learned about tinnitus in great detail since gaining my credentials in Occupational Health and Safety. And some of my family members, both hearing and hard of hearing, have complained about the occasional ringing in the ear which usually goes away after a short while.
But I am an overachiever.
Dis in my head?
August 14th, 2024, started an evening like any other. I lay on the couch after a long day of work, candles lit, drinking a giant cup of tea, reading Nikita Gill’s The Girl and the Goddess. Billie Eilish crooned in the background. Bliss.
Suddenly there was a cacophony of noises that seemed to be coming from somewhere outside, to the left. I bolted upright, almost throwing my tea off the table. I stared at the window – where could it be coming from?
At first I thought there were dogs howling or fighting in the street. But then it started sounding like a bird screeching. Or was it the mole crickets? It hadda be d crickets, dey relly out in force dis time ah year.
rooowroowrooow! krudrruhuuuuuuu eeeeeeyoaw!
Minutes pass. A crapaud? Somebody galvanize ain’t bolt down properly on dey roof? Meh neighbour son playin in d yard? Chirren love to scrape tings. Music from a car in the distance? Did I leave my computer on inside? No really, wah d fuck is dis and why it not stoppin or gettin quieter?
Buh wait, why I only hearin it on d left side? Dis in my head?
oowoooooocululeelooooo skreeeeeeeeeeeeeeee
Like an owl, but higher
These unearthly sounds and my inner monologue went on for hours. Sleep did not find me that night. My practiced peace was shattered.
The next day I was in such a foul mood, the sounds lessened a bit but not by much. I got on the phone with my sisters and friends and walked around my entire apartment to ask them if they were hearing any noises. No “kuhdrrrrrrrrrrrrrrrrrrrrrrrrrrr”?
A friend came over to lime and I asked, “you hearin a shrill warblin sound…like ah owl but higher?” No, he responds, with a confused stare.
crweeeeeeeeeeeeeeee
And so I turned to Google:
Can ear infections cause ringing in the ear?
Can tinnitus only be in one ear?
Is there a cure/home remedy for tinnitus?
What is Tinnitus Sound Therapy?
ENTs near me
Cost of a hearing test in Trinidad…
Any noise to beat the noise
The irony is that one remedy to a wickedly intrusive sound is even more sound. Over the following weeks, I vacillated between tinnitus and trying every single tinnitus sound therapy playlist on Spotify.
White noise (TV static), pink noise (rain sounds), blue noise (steam hissing), green noise (ocean sounds), any noise to beat the noise.
I went to bed with a speaker blaring Muffled Sleep Noises by Hayden Bell; repetitive factory machine noises, an endless shhhhhhhhhhhhhhhhhhhh and gruh ehhh gruh ehhh gruh ehhh gruh ehhh. Volume set to 100… I’m pretty sure my neighbour had some questions.
This in turn caused migraines which triggered my vertigo which meant insomnia. I tried something calmer, Sleep Music for Tinnitus by Little Symphony Wellness; minor relief.
Searching for a cure
On the internet people recommend meditation techniques and lifestyle changes as tinnitus remedies. But there are different causes of tinnitus. Yoga might be great for tinnitus caused by anxiety; for tinnitus caused by hearing loss, not at all.
I had a checkup and hearing test. I was told the pressure in my ear was fine, there was no buildup, the canal was clear and there were no signs of inflammation or infection. Due to my level of hearing loss, I would need a pair of hearing aids.
Tinnitus. Sound Therapy. Rinse. Repeat.
A cycle begins. During the day I sit down to work sleepless, amped up on coffee, struggling to concentrate over the cries of the now constant companion in my ear. I am thankful for the stream of traffic on the nearby boulevard rumble rev beep whoosh vroom.
At night, as outside quiets, it comes raging back. I twist and turn in bed, covering my left ear - even though I am fully aware the sounds aren’t external. I try alcohol or drugs for pain relief and nausea, anything to sleep through the unnatural symphony.
kudrrrrrrrrrrrrrrrrrrrrrrrrrroowoooooocululeelooooo skreeeeeeeeeeeeeeee.
I fall asleep crying to Linkin Park blasting from my record player. The next day a friend wants to hang out – I can’t be around people right now; I can’t converse because it’s difficult to hear over the sound of the vintage telephone constantly ringing in my ear.
pudrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr
Another night, isolation. Another day, tinnitus. Another night, another day, tinnitus tinnitus tinnitus…alone and surrounded all at once.
“What does it sound like today”
I think enviously of Van Gogh and what he did to his ear. My friends and family check-in.
“Don’t give in to this tinnitus eh!” I’m trying.
“What does it sound like today?” The Greek three-headed hound Cerberus raging at the gates of hell.
Like dogs fighting in the street, yet with some otherworldly cadence.
Is this my life now?
Could I make it through the day in office? Can I concentrate in this Zoom meeting? Eyes darting to every corner of the room, missing the closed captions, cringing because the voices aren’t the right frequency, so instead I hear kyeeaow!skreeeeeeeeeekudrrrrrrrrrrrrrrrrrrrrrr. Nothing registers.
I hear my name and frantically scroll through the transcript so I can respond. Can I still do this? What good is a Communications Consultant who can’t communicate? Is this my life now? Will EADGBE still sound the same on my guitar? Will I be able to hear Billie Eilish sing the bridge of The Greatest when I attend her concert in Spain? IS THIS MY LIFE NOW?!
After six months of torture, I decided to accept that I needed hearing aids to stop hearing.
Struggling in Trinidad and Tobago
It took months to even hear back on the possibility of an appointment. There are only two licensed audiologists in this country of approximately 1.5 million people.
One of my hard of hearing sisters lives in Canada and wears hearing aids. She stepped in to help. On the same day she reached out to her clinic, they got back.
Her clinic went above and beyond to try to find a way to get me a pair of hearing aids. But they encountered obstacle after obstacle. Hearing aid batteries are considered “dangerous goods” when being shipped by air, because of their lithium batteries. It wasn’t possible to get them from Canada.
All the while: eehhhhh oooo ooooo eeehhhhh oooo oooo, my resident clan of hyenas continuously cackle for my attention.
Sounds I’d never heard before
A long-awaited European trip led to the added benefit of finding a suitable audiologist and hearing aid provider. After nine months of torturous suffering, having carried Cerberus, my tinnitus baby to full term, I finally found a reprieve.
In Amsterdam I could buy a fantastic pair of Starkey Edge AI hearing aids from the kind-hearted team at Makker. These hearing aids “mimic the brain’s auditory cortex … reducing noise in real-time with advanced and powerful AI at the edge.” And the price surely reflects that.
I knew it would be expensive, and that local insurance would not cover a foreign service provider. With savings and a bank loan I could accumulate the €3,600, the cost of over half a year’s rent.
My pockets hurt, but in an instant the nine months of tinnitus was gone! A wave of shock, relief, surprise and confusion washed over me. All of a sudden I could hear sounds I’d never heard before.
The first time I tried hearing aids, I hated that. But this time I thought, great! What’s better? Cerberus, my constant companion, was gone.
The world is so loud
Well, not entirely. Months have passed as a newfound hearing-aid wearer. I can’t wear them while sleeping, nor showering or swimming.
As I pop them out, kudrrrrrrrrrrrrrrrrrrrrrrrrrroowoooooocululeelooooo Cerberus returns, but nothing else does. Everything I could have heard before now sounds like I am underwater.
The conversations I carried on just by lip-reading and my usual hearing are now a lot more difficult. My 20% feels like 8%. Hearing with my hearing aids has made me less capable without them. I feel deafer.
The fine print on the hearing aids says they take a while to get used to, wear them everyday to get accustomed to the new sounds.
But the world is so loud. While I was able to hear Billie sing The Greatest, I also heard every single one of the 20,000 other fans singing. Painful.
That fan rattles so much. That air conditioning unit definitely needs servicing. Is that a lizard making that noise!
People talk so much and the sounds never stop.
Still yearning for silence
I think those who hear everything are at a disadvantage because it’s constant; there’s no relief.
I sit here with my fancy hearing aids watching me. They’re docked in their little charging garage which simultaneously disinfects them with ultraviolet light.
Cerberus is alive and well; now almost a dependable companion and a welcome reprieve from life in the hearing world.
Which discomfort do I prefer? I was accosted by sound and then forced to chase even more sound to find a relief that comes with a different set of sounds? SOUND?! I’ve had enough of sound.
Puhdrrrrrrrrrrrr
Tharā and Cerberus
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Outro
For more from Tharā, find her on Linkedin.
For more from Kinanty, see her website.
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Acknowledgements
Sincere thanks to Peter for sharing his lived experiences and helping me to do a vulnerable self-inventory on the impacts of my progressive disability. His editing insights and sincerity made writing this piece reflective, yet fun.
To Kinanty Andini for the illustration capturing Cerberus in all his glory, and me in my agony.
To all my fellow Debriefers for having the courage to share your stories with us, and all the organizations whose support allows us to continue to do so.
To my sister Kalyan, Shelly and Lucas (Community Hearing Care, Ontario, CA), and Nathalie and Lonneke (Makker Hoortoestellen, Amsterdam, NL) for their dedication and care in helping me access hearing aids.
To my sister Amirah for being my ever-faithful voice-note transcriber, phone-call impersonator and speech translator, and for accompanying me to chronicle my first hearing aid appointment on her indelible Polaroids.
To my sister Sana, and my friend Sheneice for their daily check-ins to make sure I was still alive and fighting.
And thanks to everyone else who has shared some small but memorable part of my journey.