‘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 reallife 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.
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 lowend hearing, so my high-end hearing was what remained. People sounded