OJust a few months before the pandemic hit, Eliza Barry Callahan, then 24, woke up to an intense drone coming from her head. She was scheduled to fly to Venice the next day from New York, where she lives, for a friend’s wedding, then go to a walk-in clinic for ear, nose and throat problems. She assumed she had an ear infection and needed to take the appropriate antibiotics before her flight departed. The attending physician told her that her ears looked perfect.
This was actually a very bad sign. A visual indication would likely have been associated with a disease that is much easier to treat.
“He said, you’ve lost a lot of your hearing in your right ear and it was unlikely I would recover,” Callahan recalled. She sent her last-minute messages of regret 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.
The same was true of another Eliza, the astute narrator of The Hearing Test, Callahan’s smart and slim novel about an artistic young woman suffering from hearing loss. Like the real Eliza, the fictional Eliza is plagued by a relentless noise in her head. She compares it “to a large piece of sheet metal moving back and forth, a continuous rolling thunder.” When she visits a hypnotherapist after seeing many other specialists, she tries to explain the rumbling that just won’t end: “It’s like God adjusts his piano stool, but never gets around to the song.”
Initially, 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 thought, I’ll try anything,” she said. The treatments started to work – until the problem resurfaced. This time she received a new diagnosis: autoimmune inner ear disease, also called AIED. The rare condition known to affect less than 1% of hearing loss cases in the US involve the immune system attacking the inner ear and damaging the nerve. (Rush Limbaugh, who lost his hearing in one ear and had only partial hearing in the other, had too It.)
Callahan, 28, who is also a visual artist, musician and director (she wrote and directed a short movie 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 changed someone’s perception of themselves in relation to their world,” she said. The debut author spoke to the Guardian from Los Angeles, where she was visiting friends and medical experts for a month.
What was it like when you started losing your hearing?
It was so serious and so dramatic. The frequency I lost (the ability to tune in) was low frequencies, so my father’s voice was very difficult to understand, but my mother’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 boost your immune response. They still don’t understand exactly why (the treatment) works, but it does bring a subgroup of patients into remission. And then the pandemic raged and I couldn’t access more treatments. I am also taking a trial drug that is not FDA approved. I have been in remission for about two years.
But the year I wrote most of the book was the year my hearing deteriorated and I couldn’t really talk. I had hyperacusis, which reduces your tolerance to sound. So while I lost my hearing, I also became extremely sensitive to the sounds I could hear. I hardly spoke for several months. It had never occurred to me that silence is something that is actually quite loud.
How would you describe those first days?
You have a sensory shift that’s similar to what happens when you cover your ears and your own voice gets quite loud, or how your voice sounds louder when you’re underwater. I lost my low hearing, so my high hearing was what was left. People sounded like Alvin and the Chipmunks. I wore the kind of headphones they sell at the hardware store for people who use power tools in my house because doing dishes or making noise was so abrasive.
Hearing is a feeling that many of us take for granted. What was the impact of its loss?
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 lip reading. When you lose your hearing, there are other compensations. When people hear that you are losing hearing, they assume the volume is turned down for you. But actually the world became so loud. It is an experience that you cannot begin to conceptualize until you have gone through it.
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 started spreading 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 was the first treatment?
After 10 days my hearing completely recovered and they said: this is really rare. You’re really lucky it came back. But six or seven months later it came back. And then the doctors realized that it wasn’t sudden sensorineural hearing loss, but actually this rare disease called inner ear disease, and there’s no real known treatment for it.
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So what have you been up to?
My mother is a vet, a brilliant doctor, and she has gathered all the medical papers and tests, and looked up every possible treatment, test or study. We visited every top doctor in New York and Boston. I’m really lucky. Without the radical privilege of having a parent who knows medicine and is equally committed 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 helped me keep my hearing was steroid treatment, but my hearing still fluctuated and you can’t stay on 60mg of prednisone for a long period of time. They kept giving injections and nothing really worked.
But a doctor in New York told me that 15 years ago he had a patient who lost her hearing, found treatment in LA and eventually regained some of her hearing. So we flew to LA. The doctor identified what I had as something auto-inflammatory. Until then, all the other doctors said there wasn’t much that could be done. That doctor told me that there was another doctor on Long Island who was researching this disease and who does a similar type of autoimmune treatment.
What does the experimental treatment look like?
They are multiple shots, similar to allergic shots. And then I take betahistine, a compound antihistamine.
What have been the side effects?
There are no side effects from my current treatments. But when I was on prednisone it was miserable. I have made a log of my experiential relationship with the world. Every time I blinked I could hear it. I’ve never used psychedelics before, but it was a psychedelic experience. It was just a complete expansion and rupture of consciousness. Suddenly I was brutally close to myself and aware of myself in both a very heightened and distorted way. And I was very aware that it was something I was experiencing all alone.
It was also very scary, because prednisone suppresses your immune system, and this was during the height of the pandemic, so I was in ultra-ultra-lockdown.
Was it clear to you from the start that you would 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 learning, I thought I would quit. Even a few weeks into the program I thought: I made a serious mistake. Everyone here wants to write a novel. I never want to write a novel. I wrote a two-page essay over winter break and wrote to one of my professors, Kate Zambreno, and told her that I was very sick and was leaving the program. And she said 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’ve never written anything longer than three pages.
How would you describe your condition now?
The doctors are generally satisfied with the results. I see them every few months for hearing tests and treatments. When I was at the doctor yesterday, I asked him: how long do you think I need immunotherapy? He probably told me for a lifetime.
The hearing test by Eliza Barry Callahan leaves Catapult on March 5.