I lost the hearing in my left ear suddenly, when I was 30. One morning, working at home, I picked up the phone to answer a call and couldn’t hear anything. I switched ears. The right ear was fine, and I talked to whoever had called. When I hung up from that call, I called various automated numbers – in those days you could call the weather, the time, and others. I switched from ear to ear, no sound in the left, normal in the right.
There had been no indication that anything was wrong. No pain, no popping or whining. But as the day wore on I realized everything was too loud, I was suffering from hyperacusis. And I felt dizzy. I went outdoors to clear my head, but the street noise was assaultive, so I scuttled back inside again.
I found an ENT, who ordered an MRI to rule out an auditory neuroma or structural damage in my ear. I had a series of blood tests to rule out autoimmune disease. All the tests were normal. My diagnosis was idiopathic sudden sensorineural hearing loss. “Idiopathic” means of unknown origin. Ninety percent of sudden sensorineural hearing loss is idiopathic.
For years, the term idiopathic and the lack of an explanation for my loss tormented me. If I could find the cause, maybe I could find a cure. Over the next three decades, I lost the remaining hearing in my left ear and my right ear declined as well. By the time I was 60, I was functionally deaf. And angry. How could there be no explanation for such a monumental change?
Eventually, I learned to hear again with a cochlear implant and a hearing aid. But even as the technology got more and more sophisticated, the science lagged behind. No one could find a cause, and no one could find a cure. So my rage and despair continued. These emotions are not good for your health.
In her new book “The Invisible Kingdom: Reimagining Chronic Illness,” New Yorker writer and poet Meghan O’Rourke writes about her decade-long battle with an amorphous, systemic disease that her doctors now think was lingering Lyme disease complicated by other autoimmune conditions. These conditions worked together to leave her in debilitating pain and brain fog for long periods of time. Perhaps most frustrating was the lack of an explanation for her illness. She writes that she “craved” a diagnosis. Diagnosis “is a form of understanding,” she writes. The term itself derives from the Greek word “to know.” For her, that knowledge “brings the hope of treatment or cure.” Eventually she got a partial diagnosis and was able to resume a more normal life – and to write an excellent book.
I had a diagnosis: sudden sensorineural hearing loss. But once my other ear became involved and as the loss worsened to profound in the original ear, that term no longer applied. I was left with no diagnosis, no explanation, no cure. And ever worsening hearing.
Eventually – and I mean really eventually (think decades not years) — I accepted that I’d never know what the cause was. I was able to come to terms with it. Only then could I start making a new life with my hearing loss. It took hard work, supportive friends, sophisticated technology, shared experiences and tips from others — primarily through the Hearing Loss Association of America. I’ve been president of the New York City Chapter of HLAA (with a short break) for 7 years. I served on the national board of HLAA for 6 years. Those years — and my board colleagues — taught me how to live with hearing loss.
These days I hardly ever think about the mysterious origin of my condition. I still get frustrated with my hearing, but I no longer obsess about the cause. Hearing loss is part of who I am.
That, by the way, is why we say a person “has hearing loss” instead of “is hearing impaired.” “Having hearing loss” is one facet of your identity, part of who you are. Being “hearing impaired” puts the impairment front and center in defining who you are. You are your disability. This person-centered phrasing is correct for any disability. Person first, disability as one of many aspects of your identity.
For more about living with hearing loss, read my books: “Smart Hearing: Strategies, Skills and Resources for Living Better with Hearing Loss.” and And “Shouting Won’t Help: Why I and 50 Million Other Americans Can’t Hear You.” Both are available as ebook or paperback, on Amazon.com.