Sunday, February 8, 2009

Cochlear Implants

Hi everyone,

Cochlear implants - it’s a topic I have avoided like the plague. I will touch on it briefly and then run screaming in the opposite direction. The only person who has been subject to multiple serious conversations about CI’s with me is my audiologist and I am pretty sure that at this point, she groans at the very mention of the device when I am involved.

My audiologist and I have been through it all. Every pro and every con. We have had lengthy in person discussions on a near bi-monthly basis and the occasional email that could be published as a short novel. It has almost been one year since the discussion started and I honestly cannot say I am any closer to making a decision.

Right now I have my audiogram in front of me. It looks something like this…

Freq. R L
250Hz 105 100
500Hz 110 105
750Hz 115 105
1000Hz 120 115
1500Hz NR NR
2000Hz NR NR
4000Hz NR NR
6000Hz NR NR
8000Hz NR NR

SRT: DNT
Speech Discrimination: CNT

Basically I am Deaf, both audiologically and culturally.

With that audiogram you would think it would be an easy choice for me. I love music, I have a Hearing family, I’m young, and I have a ton of potential. At the same time, I understand music through vibrations and enjoy listening to it with my hearing aids, I don’t spend a lot of time with my family and they live several hours away, I’m young, and I have a ton of potential.

Recently, in an email to my audiologist, I laid everything out on the table. I said exactly how I felt about everything in that exact moment. I would like to quote some of that now…

“I realized how much I have changed as a person in the last year. I am not sure I can pin point how I have changed exactly but my personality, my views, and my opinions have all evolved a considerable amount. I know part of it has to do with me living on my own in a new city, part of it has to do with growing up and maturing, and part of it definitely has to do with my hearing loss. I feel like the idea of getting a CI is more connected to who I used to be than who I am now. I do not feel like I fit best with Hearing culture anymore, I definitely feel like I fit better with Deaf culture.”

“I believe strongly that things happen for a reason. I have been through a lot in my life and I have had many profound experiences that have influenced me in ways I don't even know yet. I have already seen how my hearing loss has affected others in positive ways and ways in which I have been able to use it in positive ways. When I go to work and I see my kids that have a hearing loss and the way they react to be because I am the same as them…it's really interesting. I can't explain how it is impacting this decision for me but it is.”

“I'm not torn between hearing more and hearing what I can now. Honestly, I am quite comfortable with what I can hear now. I am torn because it is choosing between cultures and languages. It goes beyond all of the audiological stuff and becomes an argument of which world I feel best suits me. In the end though, if I were to get a CI, I wouldn't really fit in either world. I wouldn't be Hearing and I wouldn't be Deaf. I remember being in that spot before. I can remember the concentration it took for me to be in school and how much I missed. I don't want that again.”

Even with all of that I found myself pulling out my Cochlear and my Advanced Bionics information packages and flipping through them for the millionth time in the last year. I can’t help but wonder what it would be like to hear a little bit more but at the same time I am terrified to find out.

Every time I meet a new audiologist and the discussion about cochlear implants comes up I get apprehensive and set up a barrier. Often the audiologist is completely disrespectful of my Deaf culture and ASL which is also a massive turn off for me. Right now, I have an amazing audiologist who respects every choice I have made so far. I am confident that if she truly believed I was making the wrong choice, she would fight me on it but up to now she has been 100% supportive.

In the fall we met with a cochlear implant audiologist together. I would never have done it if my audiologist wasn’t there with me. I left that meeting completely turned off the idea and was adamantly against it for a month or two before returning to it once again. This is the trend for me. I get curious and look into it again and then run in the opposite direction. I don’t know if I am running out of fear or of genuine disinterest and until I can figure that out, I can’t make a decision.

That’s all for tonight!

Jenny

2 comments:

carol said...

Are you certain you would not still be a welcome member of the deaf community after CI? Not pushing the CI, definitely not pushing it, but only wondering if this would cause a shift in your world. I wouldn't want to feel left w/ one foot on the dock, the other firmly planted in the boat.

I was born with perfect hearing. Now having gone thru sudden hearing loss as well as having experienced periods of hearing nothing during extremely bad ear infections, ruptured ear drums, allergies and such over the decades, I have found myself in a world where I had no coping skills. After the sudden hearing loss and problems getting HAs that I was not allergic to, then problems getting them properly programmed, I became determined to learn how to sign. Have resolved the HA issue but still need to learn how to sign. Not only would this make life easier should my only ear that really responds well to HA also fail but it is something I want to do. However, I wonder if I would ever fit well into the deaf community...however much I would wish to be part of it. Could I move easily between one world and another? The hearing world does not remember to be considerate when I'm struggling to understand conversation w/out HA, even before I got my first pair. Not even my family could remember simple things like don't talk to me w/ your back turned. Don't start saying something and continue the sentence as you walk away down the hall or street! I longed to be around people who did not get angry when I asked something to be repeated or when I just plain did not hear them.

The doctors tell me I'm not a candidate for CI and never could be. Didn't ask why, because for now my problem is mostly resolved. Don't know all the risks of the CI surgery, either, so that, too is a consideration for me personally. Have had vertigo in the past so bad that I could not move from one place to another w/out assistance. Would not be able to live like that.

Whatever you decide, best of luck with your adventure. Yes, you have tons of potential. It's your life and you are making the most of it. You'll know best whether to have a CI or not. There could be advantages to this procedure. Or not!

carol said...

P.S. So nice to "meet" you via youtube. Now I know for certain I need to learn how to sign and understand what is being signed.