The Day I Lost My Hearing

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.

For more on hearing loss and hearing health:

shoutingwonthelpLiving Better jpegKatherine Bouton is the author of “Living Better With Hearing Loss: A Guide to Health, Happiness, Love, Sex, Work, Friends … and Hearing Aids,” and a memoir, “Shouting Won’t Help: Why I — and 50 Million Other Americans — Can’t Hear You”. Both available on Amazon.com.

19 thoughts on “The Day I Lost My Hearing

  1. Katherine, I really enjoy and benefit from your posts. Like you, I am a friend of Wendy Kassel, and hope we can meet some day.

    In today’s post, you refer to getting a cochlear implant, but said it wasn’t that beneficial after several decades of hearing loss. My 87-year-old mother, who is almost but not quite completely deaf now (familial genetic nerve-based otosclerosis, which we both have), has been evaluated for a cochlear implant at Columbia and is considering getting one. She has some disabilities which may make her unable to learn new things – we’re investigating that now – and I worry that the cochlear implant therefore may be useless. I’d love to hear about your experience as we try to navigate this decision.

    Julie Kaufman

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    • Hi Julie, Different people respond to cochlear implants in totally different ways. Some people hear really well right from the start. Some, like me, need lots of rehab and practice.
      The surgery is not difficult for the patient and Columbia has really skilled surgeons.
      What does your mother think?

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  2. Great column! FYI, in case I did not tell you already — I have cancelled my party plans for 12/18. I am in NC with my sister who on top of breast cancer fainted, fell and suffered a hairline fracture of her pelvis. She was scheduled for a pacemaker yesterday but they decided at the last minute to try diet instead (a good decision, I think). Here’s hoping there’s a book party in February. Is it “not done” to have a party for one’s own book? cd

    On Tue, Dec 6, 2016 at 9:23 AM, Katherine Bouton wrote:

    > Katherine Bouton posted: ” 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 — H” >

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  3. Good morning. At 61 I just had a cochlear implant 2 weeks ago tomorrow, after decades of struggling to hear at work, graduate school, parenting and socially; also progressive, hereditary, bilateral sensorineural hearing loss. My mother at 81 yrs old had a CI 4 years ago and it literally gave her a new life that she is still enjoying. As I heal and count the days until activation of the implant, I am also trying to moderate my expectations, and yes excitement at the possibilities, and marvel at my mother’s courage and role modeling. I say she should go for it.
    p.s. my daughter recently graduated from Columbia.

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  4. And Julie/Katherine, my mothers CI at 81 enabled her to get on an airplane, by herself, several years later, to attend her granddaughter’s graduation from Columbia U. Truly, a role model.

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  5. Thank you for sharing your story, Katherine. I was born with a mild hearing loss (perhaps due to my mother catching the mumps from her 4th graders while pregnant with me??) which has gradually worsened over my life. At 20 (1993) my hearing had declined to a point that, with improvements made in hearing aid technology, there was a match, and I was fitted with my first, in-the-canal aids. Over the years my aids gradually grew in size as my hearing declined (to the point of moderate-to-severe loss in both ears). Then 18 months ago, my left ear worsened during the summer months; I thought it was water in the ear because I’d been swimming. The hearing did improve after a few weeks, though. But in November 2015, the left ear went “out” again. I had been under a lot of stress in my doctoral program (big publication on my shoulders), and I do have an autoimmunity. Not sure if the stress was part of it — your own story describes the stress of a new job. We also tried autoimmune suppressants and intratympanic dex shots. Nothing helped, so in March of this year I received a cochlear implant. I have not been entirely satisfied with it. After activation it sounded like weird pan flutes, or being in a room full of semis hissing! About a month or so in, the sounds did start to become words. But the *quality* or tonality of the sound is still really poor, in my opinion. It’s like a combination of three settings on a voice-warping app I found: heavy robot + bear (low) + guitar. In this way, perhaps having one ear that still hears acoustically is a disadvantage — I dislike how the cochlear sounds compared to the acoustic sound. Each time I see my cochlear specialist, he reassures me that it will continue to improve. And slowly the comprehension inches up. It is better than having only the right ear with a hearing aid. Still I get discouraged because of the quality of sound.

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  6. HI LIsa, Sounds like a tough story. But a doctorate while you’re going through all that? Wow. I’m impressed.
    Let me respond to two things.
    I think stress is definitely a factor for me. The high stress periods in my life have always led to notable drops in my hearing and at one point to a year long series of vertigo attacks. So do try to keep the stress under control as much as is possible.
    As for the c.i. I really recommend formal auditory rehabilitation. Where are you located? I might be able to recommend someone. (you can email me at katherinebouton@gmail.com). Informal rehab helps too — listening to books on tape with a print copy of the book to refer to, the online LACE program. I wrote a post in September about auditory rehab. “For My Summer Vacation I went to Hearing Camp.”
    These days I feel as if the sound of voices through my c.i. is more natural than the hearing aid. But the two are melded in my brain so it’s hard now to know where the sound signals are originating.

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  7. Dear Ms. Bouton,

    I am a huge admirer of your writings on hearing loss. I feel so fortunate that a person as smart as you, and such a good writer, is attacking exactly the issues that concern me. Thank you so much for that.

    I have a specific question that I thought you might be able to either answer or point me in the right direction. I have severe hearing loss in my left ear, and wear a hearing aid that functions very well. My right eardrum, however, is perforated, I have lost all hearing and I am not able to wear a hearing aid. After 9 (count ‘em) tympanoplasties I am assured that the grafted eardrum will never take. My Los Angeles doctor and my audiologist are highly suggesting a BAHA implant. As you can imagine I am gun shy to have another operation. But it does sound like it might be the ticket to regaining some hearing on my right side. I wonder if you have any personal experience with the BAHA or if you know others that have had success. Even a modicum of hearing in my right ear will make my life much easier.

    Thank you so much for taking the time to listen. Much appreciated.

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  8. Hi Katherine,

    Thank you for sharing your story. I wish that I had the words to articulate my feelings and experiences as a newly deafened adult as well as you do.

    I spent my entire life as a hearing person, never having issues with hearing. Two years ago, I contracted bacterial meningitis which resulted in bilateral sensorineural hearing loss. Less than a month later, I had bilateral CI surgery.

    It is taking me a long time to process the loss that comes along with going deaf. Your story has given me much needed hope.
    .

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    • Dear Kim, I’m so sorry to hear about your loss. I hope the c.i.’s are working well for you. It would seem that you’re an ideal candidate — the more recently you’ve lost your hearing the more likely you’ll benefit from the c.i. Losing your hearing is a big loss — it took me a while to process that, and to accept that it was okay for me to grieve that loss.
      Are you in an area with a Hearing Loss Association of America chapter? Meeting others with hearing loss can be really helpful. My book Shouting Won’t Help is a memoir of losing my hearing — all that I went through. Writing it was therapeutic. I’m much more accepting of my fate than I was.

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  9. I often do wonder if the flu shots are ototoxic in certain people (lower immune system for example which might make them more vulnerable in handling an additional toxic burden of getting a vaccination shot)?

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    • I spent a lot of time researching this, convinced that the flu shot had something to do with it. But in the end I decided it was just coincidence. I’d had flu shots for years with no ill effects. The makeup of that year’s vaccine wasn’t substantively different from other years. That said, I haven’t had a flu shot since!

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  10. I’m skeptical of flu shots for myself. I rather do Vitamin D3 and get regular status on it, along with probiotics during the winter then do a flu shot. If my immune system is compromised in any given year due to any number of reasons, be it stress, lower resistance and so forth, I would not want to get the flu shot. But that is just me. I do understand that the flu shot is life saving for many. I’m just not too crazy about all the chemicals in those shots to create a toxic burden over load on a person who might not be able to fight it at the moment (which is a variable). The ears are kinda like the canary in the coal mine.

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