‘The world became so loud’: what it’s like to suddenly lose your hearing

Only a couple months before the pandemic broke out, Eliza Barry Callahan, then 24, woke up to an intense droning originating in her head. She was supposed to fly the following day from New York, where she lives, to Venice, for a friend’s wedding, and hightailed it to a walk-in clinic for ear, nose and throat issues. She assumed she had an ear infection and should grab the right antibiotics before her flight took off. The attending doctor told her that her ears looked perfect.

This was actually a very bad sign. A visual indication would probably have been associated with an illness far easier to treat.

“He said: you have lost a lot of your hearing in your right ear, and that it was unlikely I would recover,” Callahan recalled. She sent her last-minute regrets to the bride, and spent the next few weeks in doctors’ offices where specialists flooded her ear with steroids and told her not to get her hopes up.

It was much the same for another Eliza, the keen-eyed narrator of The Hearing Test, Callahan’s smart and slim novel about an artistic young woman who sustains hearing loss. Like real-life Eliza, fictional Eliza is plagued by an unrelenting sound in her head. She compares it “to a large piece of sheet metal being rocked, a perpetually rolling thunder”. When she visits a hypnotherapist after seeing many other specialists, she tries to explain the rumble that won’t let up: “It’s like God adjusting his piano stool but never getting around to the song.”

At first, Callahan’s doctors diagnosed her with sudden sensorineural hearing loss – or sudden deafness, as it is more commonly known. They ruptured her eardrum and filled her ear with steroids, warning her that this treatment could permanently damage her eardrum. “I was like, I’ll try anything,” she said. The treatments began to work – until the issue reared up again. This time, she received a new diagnosis: autoimmune inner ear disease, also known as AIED. The rare condition, known to affect less than 1% of hearing loss cases in the US, involves the immune system attacking the inner ear and damaging the nerve. (Rush Limbaugh, who lost his hearing in one ear and only had partial hearing in the other, also had it.)

Callahan, 28, who is also a visual artist, musician and director (she wrote and directed a short film starring Maya Hawke), has written a medical book that doesn’t feel like a medical book. “I wanted to create an experiential document about a circumstance that altered one’s perception of one’s self in relation to their world,” she said. The debut author spoke with the Guardian from Los Angeles, where she was visiting friends and medical experts for a month.

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What was it like when you started to lose your hearing?

It was so severe and so dramatic. The frequency that I’d lost [the ability to tune into] was low frequencies, so my dad’s voice was really hard to understand, but my mom’s was much easier.

What changed for you when you received your new diagnosis?

I was recommended as a candidate for a new treatment that helps bolster your immune response. They still don’t understand exactly why [the treatment] works, but it does put a subset of patients into remission. And then the pandemic raged, and I couldn’t get access to more treatments. I’m also on a trial drug that’s not FDA approved. I’ve been in remission for about two years.

But the year that I wrote most of the book was the year in which my hearing was going and I couldn’t actually really talk. I had hyperacusis, which reduces your tolerance to sound. So while I was losing hearing I also became extremely sensitive to the sound I could hear. I spent several months basically not speaking. It had never occurred to me before that silence is something that is actually quite loud.

How would you describe those initial days?

You have this sensory shift that’s like what happens when you cover your ears and your own voice becomes quite loud, or how if you’re underwater, your voice sounds louder. I lost my low-end hearing, so my high-end hearing was what remained. People sounded like Alvin and the Chipmunks. I wore the kinds of headphones they sell at the hardware store for people who use power tools around my house, because doing the dishes or making any noise was so abrasive.

Hearing is a sense that so many of us take for granted. What was the impact of losing it?

I never experienced total deafness, but I couldn’t sit in a restaurant or a room and understand anything that was going on without really relying on reading lips. When you lose your hearing, there are other compensations. When people learn you’re losing hearing, they assume the volume is turned down for you. But actually the world became so loud. It’s an experience you cannot begin to conceptualize until you’ve gone through it.

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What do you know about your condition?

It’s an inflammation of the nerve between my inner ear and my brain. It started on my right side and began to spread to my left ear as well. It’s really rare. As one of my doctors told me, it’s like being struck by lightning.

How did the first treatment go?

After 10 days, my hearing fully recovered and they were like: this is a really rare thing. You’re really lucky it returned. But then six or seven months later, it came back. And that’s when [the doctors] realized that it wasn’t sudden sensorineural hearing loss, but actually this rare disease, which is what’s called inner ear disease, and there’s no real known treatment for it.

So what did you do?

My mom is a veterinarian, a brilliant doctor, and she pulled up all the medical papers and research, and looked up every kind of possibility or treatment or study or trial. We visited every top doctor in New York and Boston. I am really lucky. Without the radical privilege of having a parent who knows medicine and is as dedicated to finding other forms of treatment, I don’t think I would have my hearing.

What was the solution?

At first, the only thing that was helping me retain my hearing was steroid treatment, but my hearing would still fluctuate, and you can’t stay on 60mg of prednisone for a long period of time. They kept doing the injections and nothing was really working.

But one doctor in New York told me that he had a patient 15 years ago lose her hearing, then she found treatment in LA and ended up recovering some of her hearing. So we flew to LA. The doctor identified what I had going on as something auto-inflammatory. Until then all the other doctors said there wasn’t much to be done. That doctor told me there was another doctor on Long Island who was researching this disease, who does a similar kind of autoimmune treatment.

What is the experimental treatment like?

It’s multiple shots, very akin to allergy shots. And then I take betahistine, which is a compound antihistamine drug.

What have the side effects been?

There are no side effects to my current treatments. But when I was on prednisone, it was miserable. I created a log of my experiential relationship to the world. Every time I blinked I could hear it. I’ve never done psychedelics, but it was like a psychedelic experience. It was just completely consciousness expanding and breaking. Suddenly I was relentlessly close to myself and aware of myself in both a very heightened and distorted way. And I was very aware of the fact that it was something I was experiencing completely alone.

It was really scary, too, because prednisone suppresses your immune system, and this was during the peak of the pandemic, so I was on ultra, ultra lockdown.

Was it obvious to you from the get go that you’d write about it?

I was in my first semester of the MFA program at Columbia at the time. When the pandemic hit and we went to remote schooling, I was thinking I’d drop out. Even a few weeks into the program, I was like: I made a grave error. Everyone here wants to write a novel. I do not want to ever write a novel. I wrote a two page essay over winter break and I wrote to one of my professors, Kate Zambreno, and told her I was really sick and going to leave the program. And she was like no, you just started a book. Another professor, Leslie Jamison, said the same thing. They were like, you have to stay and write the book. I’d never written anything longer than three pages.

How would you describe your condition now?

The doctors are generally happy with the results. I see them every few months for hearing tests and treatments. When I saw the doctor yesterday, I asked him: how long do you think I need to be in immunotherapy? He told me probably a lifetime.

The Hearing Test by Eliza Barry Callahan is out from Catapult on 5 March.