Every year I observe the day I went deaf. My life changed that day. At first it seemed nothing but negative, a catastrophe. Now I see that it gave me an opportunity, a door that opened onto a new world.
I remember the day because it was a holiday — Halloween. My hearing had been in a steady decline for three decades, but it was on Halloween of 2008 that I realized it was irretrievably gone.
I had started a new job two months earlier, and learning the routines had been stressful. Once I mastered the systems, I began to realize just how hard the actual job was, with too many elements and too many deadlines. I could tell it was affecting my health, but I was only two months into it. No turning back.
On that Monday, I had a routine flu shot. I began to feel woozy that evening, and by Tuesday I was dizzy and slightly nauseated. By Wednesday my ears were blocked. I was also hypersensitive to sound. This wasn’t the first time I’d had those symptoms, and they usually indicated a downward fluctuation in my hearing. I made an appointment with my ear, nose and throat doctor for Friday morning. I continued to suspect the flu shot as culprit, but I knew it was just my hearing, doing its mysterious disappearing act.
I live in New York, and my trip to the doctor was two subway rides. It was morning rush hour and Halloween, a frenzied combination. Teenagers in makeup shouted and roughhoused. Two businessmen hung over my seat talking loudly. A panhandler in a wheelchair hollered his pitch for donations right next to me. The noise was overwhelming. I covered my ears with my hands and shrank down into my seat. At this visit, I couldn’t hear my longtime doctor. He wrote questions for me on his computer. A hearing test confirmed the worst.
Oral steroids are a standard treatment for sudden hearing loss, and although mine didn’t fit that description, he prescribed them anyway, a blockbuster dose gradually decreasing over the next two weeks.
I was already stressed and overwhelmed with anxiety. Now I panicked. How could I possibly do my job with my hearing as diminished as it was? I took the rest of that day off, working from home. I sobbed and raged and sank into a fierce depression over the weekend. On Monday I went back to the office. I made vague reference to my hearing having been affected by the virus I’d had but stayed far from the truth.
My hearing never got better. I struggled through another year, pretending to myself that I was managing. I’m a good lip reader, and I set strategies in place to maximize my ability to understand. The following September I got a cochlear implant, but after three decades of profound hearing loss in that ear, it didn’t help much. Still, I thought I was getting away with it. Then a tough new boss came in. He didn’t buy it. I wasn’t a team player, he said.
I left that job at the end of the year. At first it seemed like a huge defeat. But as I gathered my strength and began to consider what to do next, I came to think of my hearing loss as an opportunity. I had been clueless about hearing loss. I thought my situation was unique. I was embarrassed to be going deaf at such a young age. I hid my hearing aids and I tried to hide my cochlear implant. I knew nothing about support groups or advocacy for people like me.
And that was my opportunity. I could share what I learned, and continue to learn, about hearing loss. I joined the Hearing Loss Association of America and found other people like me. I became an expert — writing and talking about hearing loss from the patient perspective, and eventually from the consumer perspective. It’s an interesting transition from patient to consumer. As a patient, you are mostly a passive participant, hoping for the best. As a consumer, you have rights. And as an advocate, you channel both of those roles into making your disability your strength.
I never think about that Halloween without a tinge of sadness. But out of that experience came a chance for a second act. One of the things I have found most interesting in my new life is how many other people have also been forced into a second act, by hearing loss or by other misfortune.
Many of my Hearing Loss Association of America colleagues have also become hearing-health activists, many of us working as hard at it as we ever did in our paid professions. For me, and for others, it’s also far more gratifying than my paid work ever was. And the best part — it’s given me a whole new life.
I know it’s true for others. Please share your experience in the comments section below. If yours wasn’t as positive, remember that mine also had — and continues to have — its downs as well as its ups. Nobody ever said it was easy. But that doesn’t mean it doesn’t have its rewards.
This post was first published on AARP Heath on December 5, 2016.
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