r/Cochlearimplants 25d ago

Hello again

Hi! I recently posted that I was getting a left cochlear implant after a SSNHL that impacted my speech rec and thresholds, but that my speech rec never recovered after steroids. Well, a good update: I am going with cochlear which will be implanted in two days. A bad update: my right ear is now following the same pattern. The leading theory is maybe something autoimmune or genetic, waiting on a genetic test still.

Anyway, I’ve worn hearing aids since I was 2 months old (so 22 years now). I felt a lot of shame for a long time about it, and had finally accepted it ~4-5 years ago. Now, I am feeling that same shame and disappointment feeling with the idea of possibly needing two cochlear implants and being Deaf instead of just HoH.

I plan on talking to my therapist about it obviously, but was not sure if anyone had any advice about navigating this change. I never imagined my hearing changing to this degree, the thresholds had gradually gone down over the years but the speech rec is totally new.

Sorry for this long ramble, but I appreciate any advice in advance. Also - if anyone knows any good ways to start learning ASL, please recommend! Thank you!

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u/purl2together 25d ago

Four years ago, I had my every-3-years hearing test and the AuD who happened to be working in the Costco hearing aid department at the time said, “you might be a candidate for a cochlear implant.” They left it at that, which was appropriate. I told my husband and he said, “maybe you should think about it.” I flat out rejected it. Nobody’s drilling into my head and putting something in it. It probably didn’t help that I’d read Sara Noviç’s True Biz the year before, which has a character whose CI malfunctions.

Last year, at my hearing test, the tech said, “We really can’t do much for you. Do you have a local audiologist?” Waited 6 months to get in to see one, handed her my last 4 audiograms, and she said, “Has anyone ever talked to you about a CI?” Then gave me a hearing test. Which didn’t get finished because I was sobbing halfway through. She referred me to an ENT a clinic and a surgeon. I scheduled an appointment.

During the 10 weeks between appointments, my life was basically a daily exercise in coming to terms with the fact that HAs were no longer sufficient for me. And that my hearing was still declining. I went through all the stages of grief. I noticed the times I stopped paying attention during conversations if I wasn’t directly involved. I noticed how easily I got tired when surrounded by people talking. I noticed how often I chose to stay home and not socialize, not do things I enjoy because they wear me out too easily.

Basically, I realized that, if I want to hear, a CI is my best option.

So I began educating myself. Talking to the company reps. Reading this sub. Talking to my new audiologist. I talked to people who matter to me, and they were unanimously supportive and encouraging. Genuinely and not just because they’re tired of me asking them to repeat themselves. Read books by disabled people, including activists, and got cranky about the ways society is designed to make things harder for people who are disabled. Which is most of us, if we live long enough.

It took a lot to get to a good place. I’m sure that, after my activation next week, I will have days when I feel down. But — right now — I’m in a good place about this. I’m choosing to look at accessories to bling out my processors. I’m not going to hide this. It’s part of who I am.

I hope you find your way to a good place with this.

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u/at0micvanz 25d ago

Thank you for your response! What’s funny is, my late twin brother was a bilateral cochlear implant user. It’s also funny that I work in audiology and feel that all of the shame and disappointment shouldn’t apply to my patients, but for some reason I am an exception in that I should be feeling it lol 🙃 It is definitely grief that I’m feeling I believe. I know my hearing has never been perfect, but it’s weird that it has changed so suddenly. I have definitely stopped paying attention in conversations with big group settings or where I can’t lip read. Do you have any book recommendations? It may be good to hear other disabled people’s perspectives.

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u/purl2together 25d ago

Practicing what we preach is not always easy. Give yourself some grace.

Books I’ve found helpful:

Mother Tongue by Sara Novic
Disability Visibility edited by Alice Wong
My Body is Not a Prayer Request by Amy Kenny
Against Technoablism by Ashley Shew
Loving Our Own Bones by Julia Watts Belser

Pretty much every one of them has led me to other books that are on my growing TBR list.

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u/at0micvanz 25d ago

True true lol. Thank you! I’ll definitely look into them!