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Every year at Halloween I remember the day I went deaf.
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 Monday, I had a routine flu shot. I began to feel woozy that evening, and by Tuesday I was dizzy and slightly nauseated. I attributed it to the flu shot. 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 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.
I had been gradually losing my hearing for almost 30 years and I had seen the same doctor for most of them. He'd put me through every test imaginable over the years, including three MRIs and a full-scale autoimmune series. No diagnosis. At first the loss was just in my left ear, but then my right started to go as well.
At this visit, my hearing was so bad that I couldn't hear him even in his quiet examining room. 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 an angry depression over the weekend. On Monday I went back to work. 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 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 as a hearing-loss expert and advocate is how many other people have also been forced into a second act.
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.
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