How I came to my decision

So I have been asked, why, if you are happy being deaf and happy being Deaf, why in the world have you decided to get a cochlear implant? The question is simple, the answer not so much.

I have never had normal hearing, so I’m not sure what it means to hear normally, but I have always heard some things, at least with my hearing aids. I could hear music (not the complexities people describe, but I could hear it, and i could enjoy it. I could hear dogs barking, children crying, the joyful sound of laughter children make when they just can’t contain themselves, my partner telling me she loves me. my mom singing me to sleep… but now all of that is gone.

this is what I want to get back. I want to be able to hear music, and enjoy it. I love the feel of music, but I can’t distinguish what song is what, if it is a good song, or a bad song, if it is sung by someone good, only… only that there is a lot of base, or not enough.

I can see (and I am so thankful that I can) when my partner signs I love you, and I can see it in her eyes, feel it in her touch, but sometimes, I miss hearing it in her voice. I also miss the ups and down that go along with hearing peoples words, even if you can’t understand those words. being able to hear inflection, is a huge part of coming to understand what someone is saying, the message behind the meaning. I can read body language, but that doesn’t always tell you everything you want to know, that doesn’t always tell you the depth of their words (not to mention, lipreading, something I have to do almost all day is so exhausting).

My mom, she is trying, she is trying so hard to be able to communicate with me on my level, in my language (and ASL will forever be MY language), but it is coming along slow. When I call her I use either VCO (Voice Carry Over Service) or captions. Both have their ups, both have their downs. With VCO, the information comes much faster and much clearer, but captions work when I have a cruddy internet connection, and I can save the conversation. But there are times when I get horrible interpreters, or horrible captioners, and the message doesn’t come clear. There are some interpreters who do a wonderful job with showing the tone of someones voice, then there are others… who although they get the signs and the grammar right, show no emotion while doing so, leaving out a crucial part of the message, leaving me to guess. With captioning, there is NO way to understand a persons tone, no way to know if they are angry, or sad, or excited, only the words. When I get my CI, I know I will still use these services, and be so happy (still) that I have them… but then, I will, maybe, just maybe, be able to hear the inflection, hear the hidden message behind their words, even if I am never able to understand the words themselves.

also, I know, that with or without hearing anything, I will be a wonderful parent (when that day comes), but one thing that scares me, with not hearing a single sound my level of hearing what happens if my child gets hurt, and I don’t see it, what happens if someone breaks into my home, and I don’t hear it, what happens if there is a splash of water (never really heard before) and I don’t hear it, I don’t see it, and I loose my child? My children will sign, that is non-negotiable, but I also want to help them (if they are hearing) learn to talk, go to their school concerts, and be able to say, oh sweetie, yes, I heard that, it was wonderful.

Another huge reason I am choosing to get implanted, which is just over a month away, is because of my Job. I fix computers, yes, but I would like to be able to understand all of my clients, or hear when the phone is ringing, or be able to not always be 6-10 seconds behind while on the phone as I am now. Yes I am thankful for my sometimes accurate phone, it would be nice not to have people wondering why I am so far behind on the phone.

caption call phone, sometimes its right, sometimes its WAY off

there are times, though I know it would be illegal, that I am scared for the safety of my job, because of my hearing loss deafness. I am scared, that every miscommunication will be blamed on the fact that I can’t hear, that I can’t understand 100%, or sometimes even 50% of what people are saying (with lipreading), but that I will be told I need to find somewhere else to work because of it. because I am profoundly deaf, and that I will be stuck working minimum wage at a fast food place, sweeping the floor or doing the dishes… because people think thats a deaf persons place that is all I am capable of doing.

These aren’t the only reasons, but they are some of the major ones… and music, oh how I miss music.

I hope this helps people understand why I am choosing this path, why I am having my head drilled into for the possibility to hear… something, and maybe, maybe it will help people who are thinking about it for THEMSELVES to decide if it is something they WANT.

But I can not stress enough, adult, born deaf, late deaf, child (especially children) the importance of having a FULLY accessible language, through sign language. This will NEVER leave me, nor will my friends family in the Deaf community, there I feel normal, loved, never a burdon, and that is what every deaf, Deaf and hard of hearing person needs.

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3 thoughts on “How I came to my decision

  1. I read through a few of your posts…very interesting. Tell me, have you picked out a company for your CI yet? I had 3 to chose from. Advanced Bionics, Choclear, and Med…something, I forgot the rest of it’s name, and I’m not even sure about the Med – part. Brain not working right now I guess.

    I chose AB for a few reasons. They recently got approval for Clear Voice technology, and it’s supposed to be great. They worked hard to get the rating that it was improved technology, usually when technology like this comes out it gets approval saying, the same or improved. I really like the water proof CI. I like the idea that I can hear while in the pool. I have Aqua Physical Therapy on and off for a bum hip, and it’s hard because I can’t hear my trainer. And I like that the Neptune doesn’t have to go behind the ear, I can wear it in different places. I’ve had the Endolymphatic surgery before, it’s actually part of the surgery for the CI, my doctor said he’s already done 90% of my surgery…no driling in my skull. Yay. But anyway, my scar will start to hurt will my hearing aid sometimes, especially if I get hot, so having one that I can wear elsewhere is nice.
    I’m also getting the Harmony, I like the the microphone is right at your ear. So easier to talk on the phone, and your ear shape helps keep out background noise.

    But it is a very personal choice. I’m looking forward to find out what you pick out!

    I’m still waiting on my insurance company. They say it’s approved, but haven’t sent it in writing, Duke needs to have it in writing, and I’d like it too, spell out exactly what they are going to cover.

    We expected the insurance part to be easy, and I’d be getting implanted next week, and have it turned on for my birthday (July 2nd.) But it doesn’t look like that is happening!!!

    Good luck on yours,
    I’ll follow your progress.

    oh, I just lost my hearing in my left ear this past year, and my hearing in my right dropped from 85% word recognition to 36%. So I haven’t been dealing with this for long. I have Meniere’s disease, so I understand your vertigo and balance problems well.

    again, good luck
    wendy

    • Hi Wendy! and thank you for the comment. I have decided on a brand, I’m going with Cochlear Americas, because from what I have found they have the best reliability with the components. I think Clear Voice would be helpful, but I don’t like the idea of not being able to put the processor on my ear. I also have no need to hear under water, or in the shower (don’t understand how the shower would work anyways… there is nothing to clip onto when you have no clothing on), so the water proof one doesn’t do much for me, the N5 Processor is still water resistant, so if i get caught by a sprinkler or in a rain storm I will be just fine.

      what was the endolymphatic surgery? what did it do?

      within a year I went from severe profound, to having absolutely no response in either ear, and barely a response with my HA in my left ear at 110 db (has always been my “better” ear). My speech discrimination is absolutely 0… the audi who tested my speech discrimination only did a few sentences and words in each ear, then gave up because I wasn’t even hearing her talking.

      I don’t have Menieres, they don’t actually know why my hearing jumped off a cliff and died (not that it wasn’t suicidal before) but they just know it looks like it is a genetic component, though I refuse to pay for the genetic testing.

      good luck on getting your CI, maybe our surgery will be around the same time, Mine is in exactly 1 month.

      • sorry so late in response. One of my processors, the Harmony goes behind my ear. The Neptune (the one that is water proof) is the one that doesn’t go behind the ear, and I like the idea of having the option. I like to swim, and do aqua exercises, so I like the idea of hearing in the pool. I don’t think I’ll hear much underwater though. : ). Yes, I can’t imagine wearing it in the shower, as you said, where would I attach it? Would I wear the lanyard in the shower? (I guess if you were showering with someone it might be interesting. hahaha) But as I said, it’s a very personal decision

        The endolymphatic sac surgery is to help with the vertigo from Meniere’s. They remove the mastoid bone and a bit more but mostly remove that bone, so I have a big hole under each ear. It gives the endolymphatic sac room to expand and not leak, so the fluids in the ear don’t mix…that’s what causes the vertigo with Meniere’s.

        Good luck on getting your CI, I can’t wait to hear all about it. I’m still waiting on insurance approval. I’m getting pretty impatient, we thought I would have had the surgery by now. Crossing my fingers the insurance will get it together soon. They keep sending letters that don’t make much sense…on one they authorized my husband for the CI hearing test. How dumb is that? And I’d already had it.

        I’ll be keeping up with your progress.
        wendy

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