A Cochlear on the Horizon

The beginning of July marked the first anniversary of my sudden hearing loss. A psychiatrist, who’s also deaf, cautioned it could take two years to fully adjust. She may well be right, and on a good day I feel I’m halfway there. Supportive friends encourage me to turn my misfortune into a positive, the challenges into opportunities. Good advice, but just how do you go about that?

My hearing loss has changed the way I try to communicate. Now that it takes more effort and I don’t have the luxury of idle chit chat, my conversations are more directed. They’re also more selective. I can no longer participate in my women’s group meeting in a cafe once a week, but instead I may meet individually from time to time. In actual fact, one-on-one conversations are usually more in depth than in the group setting.

With less hearing, my life might be simplified, but it’s not. People tell me I’m not missing anything. It’s easy for them to say. When I go into a store and can’t hear the shop attendant, that’s not easier. Going out for a meal with friends and being unable to participate in the conversation in the restaurant is discouraging. The few people I still have an ongoing relationship with are more valued because they have adapted to my new circumstance.

Periods of quiet are welcome and I enjoy my own company in a new way. I miss going to jazz and Indian music concerts with Gerard…though I must admit, sometimes, I wasn’t so engaged in the music and it was more of an endurance test to stay to the end! I’d like to say I’m less concerned with FOMO (fear of missing out), reminding myself it’s an illusion. There may be little to miss that is truly worthwhile.

I still have a way to go – constantly vigilant against the insistent roaring in my head goading me to rush; impatient when I can’t hear because there’s ambient noise and the other person doesn’t speak clearly, directly to my face. I get frustrated when I can’t hear what Gerard’s saying to me and he gets equally frustrated. But he still loves me. Always clumsy and accident prone, I’m now even worse. I still speed around on my bike. How can I be so careless when it’s so much more critical for me to be careful? As the neurologist told me, “There’s nothing wrong with your brain, you just need to pay attention!”

Reading is still my sanctuary and even more so now because it doesn’t require the effort of listening. Similarly, at the beach, I can still hear the waves and experience the same sense of focus the ocean’s always brought me. More important, a loss that I can do nothing to change has given me a new gratitude for my husband’s love, the beautiful house he’s created, the relatively easy life we have, and our health and wealth. Things I tended to take for granted.

Of course, I can still easily get derailed. Anticipating a scheduled appointment with a new specialist for a second opinion, I expected to get greater clarification, a new approach to my condition…perhaps even hope? Instead, I got the opposite. A new hearing test revealed I’d lost yet more hearing in one ear. Shocking news because girlfriends tell me my hearing seems better – but Gerard was not surprised. The loss continues in the lower frequencies. More blood clots in the small veins of my inner ear? The hearing specialist recommended a cochlear implant but I wasn’t prepared to make a decision. The next day we left for NYC to visit a good friend with terminal cancer. This helped put things back in perspective.

It took a couple of weeks for me to finally decide to go ahead with the implant. It’s quite different from a hearing aid. Electrodes are implanted right into the cochlea and directly stimulate the auditory nerve to provide ‘a sense of sound’. The receiver, looks like a hearing aid, sitting behind my ear. A totally implanted device is in the works, but not in time for me, sadly.

Success rates for cochlears have supposedly increased from 50% to 80% today. I have talked with/heard of several that have been successful. They say success depends a lot on expectation – you can’t hope for too much. The biggest risk for me is that my tinnitus will increase. In some cases, it’s reported to diminish, in other cases it becomes worse. You also lose whatever natural hearing you have in that ear, but since I only have 12% hearing on my left side, we’ve decided it’s worth all these risks. It may take up to three months to get used to the artificial hearing – voices can sound like quacking ducks at first! But it holds the promise of better word clarity and hearing music again. First step is an evaluation and then surgery will be scheduled. So, for now I must be patient.

Meanwhile, an interesting side development: alerted by a concerned friend, I found a press release online of a study sponsored by Yale, linking a common gut bacteria, roseburia intestinale, with my autoimmune disease, Antiphospholipid Syndrome. Research demonstrated that the normally healthy bacteria has gone berserk and triggered the antibodies that form an irritation in small vessels/veins, causing blood clots and, in my case, responsible for my hearing loss. Until now, no one knew what caused the antibodies. This study is the first real research into the disease and makes me feel no longer neglected by the medical world. Excited, I printed out the article and took it to my regular doctor. He just shrugged and said, “Early days…stay tuned.” Of course, he’s right; this kind of research can take years before it becomes accepted and used to create a cure. The only treatment for APS today is blood thinners which address the symptom and the not the disease itself.

We’re beginning to plan for India next January, but whether I’ll have a cochlear before or after the trip is still uncertain. Either way, I’m less apprehensive than a year ago, and looking forward to another adventure. With all its extremes, India still pulls but is always challenging. With a cochlear implant I may be able to hear again the unique sounds of India – its music, mosque calls, Buddhist chants…perhaps even barking dogs (which I didn’t miss last year!)

15 thoughts on “A Cochlear on the Horizon

  1. Hello Roberta, I appreciated this writing as always, but this one even more so, as I see the common points between you and me in the psychology of being affected by a physical ailment. I admire your courage. I have pneumonia right now, probably got it in France a month ago, and it seems related to PD.
    Much love,
    Ch.

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  2. Nice to see a post from you. I was missing them! It’s quite a thing to go through, but you seem to be keeping a good attitude. Glad to hear your planning for India in January. Hope to see you then. Just came back from a trip to Spiti Valley – was amazing.

    Liked by 1 person

  3. Hi Roberta,

    Very nice to read your blog and learn more about your process of adjusting to your hearing loss and consideration of an implant, which you had mentioned to me recently. I can relate more to all this as I have been adjusting to my own diminished sense, of sight. I have noticed a significant shift in my ability to see to read in the past 6 months. My eyes no longer see print equally, each one focusing at a different distance. This makes things difficult. I have never needed glasses to read but this will prob change. I am seeing an Ophthalmologist in Nov. I too am a big reader and this has been very upsetting and frustrating. I have also had retinal tears in both eyes so have big floaters cruising regularly thru my sight since 2013. One way I have adjusted is to read books by listening to them on cds or streamed. I have come to really enjoy reading by listening. It is interesting to see how one adjusts and how one’s other senses compensate. I hope that the implant will be a great help to you in enjoying the joys of sound again. I look forward to hearing more about that and your journey as you move forward. It is great that you are going back to India in Jan for your usual several months long stay. We are in Croatia now, for a 2 week stay. We arrived just yesterday in Zagreb for our first couple days. Will go then to Zadar, Split and Dubrovnik. Should be quite an adventure!

    It was so nice to see you in Pilates recently. I went to that barre fusion class on Mon at 11am. I thought I might see you there. My legs are still sore from that class! Will see about going more periodically tho the 9am barre with Pattie has more core and is gentler on the legs. Hope to see you at the Y when back. And perhaps we can make plans to meet for a quiet dinner out with spouses. Or have a chat over coffee sometime.

    All best,

    Debbie

    Sent from my iPhone

    Liked by 1 person

    • Debbie, thanks for taking the time to write (and read the blog) while you’re traveling in Croatia. I’ll be very interested to hear all about the trip. I merely skirted Croatia on way from Sarajevo to Serbia. Would love to see Dubrovnik. I’m concerned about your eyesight. Hope it’s something that can be fixed….Torn retinas are not good. Yes, we should get together when you get back, at least for coffee after class perhaps. I miss seeing you in Pattie’s class! Good wishes and enjoy Croatia. Roberta

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  4. Ohhh Bobbie ❤️💕❤️🙏💫
    I’m glad you shared the real story of your situation with the loss of your hearing.
    I’m amazed with your casual conversation and smiling the whole time. I hope you can have a good outcome without tinnitus!!
    I’m concerned for you and all the decisions you have made to receive some of your hearing. Your heart is as big and full of love as ever. ❤️💕

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  5. bobbie,
    you write so beautifully. no matter what the news is,its always such a pleasure for me to read your words. your writing reminds me of joni mitchell’s songs.honest real and intimate. makes you appreciate the humanity of us all and that we all need to take a moment and enjoy this moment and this person and this breath and this sound.
    i leave for mumbai on jan 22 and return on feb 17. mika and i plan to spend a night or two in mumbai and take a train to goa where she will do a yoga retreat for 8 days i will get a place on the beach, and then we will travel to who knows where…
    see you there!!
    love
    odella

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  6. Lovely to hear from you. So excited to hear you’re planning the India trip. We hope to go in Jan but this year we’re probably going to be on the east coast this year. (the opposite coast from you….) Pondicherry, and visit friends in Auroville. Then up to Mahabalipuram north of Chenni and then Varanasi. If time we might return to the caves Ajunta and Ellora just north of Mumbai. Probably early Feb.. depending on the cochlear. If we don’t meet in India, hope to see you again in NYC or Boston sooner than later. Love from us both.

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  7. Dear Bobbie, Miriam sent me this and I really appreciated reading it. The cochlear implant sounds good, especially since I thought you had told me that they wouldn’t work for you. So that seems encouraging. I am so very, very sorry that you have to go through all this. You are my dear friend and sister from way, way back. God bless you always. Much. much love, Russell

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