Tuesday 20 September 2011

Deafinitely Girly and cochlear implants

Who am I?

I am Deafinitely Girly.

This has been me for more than three years, and before that? I was a deaf girl who occasionally had tantrums about it and wasn't really sure where she belonged.

For the last three years, I've had a sense of belonging through my blog. I've met amazing people, done amazing things, I've laughed, I've cried and I've still had the occasional tantrum.

And then this week, I felt a little lost again.

Regular readers will know that my lovely Ma is going deaf. This is horrible for her. She's been hearing all her life. She knows what she's missing and is lacking the well-honed coping skills to get her through. So she went to see a hearing specialist. And while she was there, she told him about me.

And of course he wanted to fix my deafness. My first reaction was NO WAY! It was such a strong gut reaction that even now I feel myself welling up a little as I type this... and I'm sat on the bus, next to a really cute guy.

Ma was amazing as always and didn’t push it. She just planted a tiny thought seed in my head. And it's been attempting to grow ever since.

I'm well aware of all the arguments for and against cochlear implants, but because I've never considered having one, I've never put too much personal thought into it.

But the interesting thing here is, why have I never considered having one? What is it about them that makes me want to run screaming in the opposite direction?

Well, I think it's partly fear. I've spent 30 years learning to like my world, learning to cope in my world, fighting to succeed in my world, and in all honesty, I think I've done a pretty good job.

And it's not like I haven't considered hearing aids in the past either.

About five years ago, I went to an audiology clinic and was met with enthusiastic promises of how hearing aids would change my life. I let myself get excited. I strode out of there full of hope and promptly fell over because everything was so loud.

I persevered, too. I wore them. I suppressed any disappointment I felt towards them, and then one evening I took them out as usual just before bed, and flew into a blind panic.

I was deaf. Everything had gone quiet. What was going on? Why didn't my world sound like it had done before when I didn't wear my hearing aids?

It sounds ridiculous but I ran around my flat like a headless chicken, panicking, banging stuff, banging my head, willing things to sound the same again.

I missed my world.

I couldn't bear the thought that hearing aids would take that from me while not giving very much in return.

So I took them off. And put them away. And that was that.

My world went back to how it was. I can't hear birds, babies, sirens and screeching. I can't hear consonants, I can barely hear vowels and I really can't hear 50% of the musical instruments that make up an orchestra. But because this is me, I don’t panic.

Yesterday I put a tweet out about cochlear implants and an amazing person called Vicki from NDCS tweeted back. She then sent me a huge email with so many of my questions answered. I'm going to study it at length over the next few days, but the most important thing I read was that I can find out more about cochlear implants, I can meet with specialists and if at the end of it I decide it's not for me, I can say no. I won't be seen as wasting time.

And this is good. You see, if I panic once I have an implant, I can't just take it off and shove it in my jewellery box. If I hate how everything sounds, will anyone understand? And if I can hear again, who the heck will I be?


So for now, and because I think this is the only way I can do this without becoming a wobbling ball of emotion, I am going to research cochlear implants as a blogger would. I’m going to find out more about them – the good, the bad, and the ugly – and I’m not going to think about me and them. Just them.

Deafinitely Girly – deaf researcher…

Yes, that’ll do for now.


Doose - Chronicles of a Bionic Woman said...

Wow...DG is considering Cochlear implants...i never thought i would ever read that on your blog! :-D
As a cochlear implant wearer, i wish you all the very best in your research. My decision to have one is something i have never regretted. I was not born deaf and when i was deafened, i had the same experience you did - one day i took off my hearing aids and it was a deafening silence that met me! Oh my days...i was in turmoil. I'd become deaf, totally, completely, blindly deaf. I really missed sounds, hearing things and being part of the environment around me. The CI gave me back that enjoyment to some extent; not completely, but enough to get my confidence back and dip more than a toe into the world of sound. I have never regretted the decision in made 12yrs ago. My 12-yr annual review with my audiologist is coming up - i will be subjected to a battery of tests to access how my hearing has improved (or not) and offered any latest gadgets to help with the listening experience-am quite looking forward to it! :-D

Tina's blog (I Look so i can hear -http://funnyoldlife.wordpress.com) is a fantastic hub of info on all things CI-related.

Happy researching!

D xx

Liz said...

When I came into the blogging world, I learnt about CI's threough other people's blogs. Tina's was one of them, and there are a few others too. Mostly good, but I do know a few that it did not work for them. Each a different why.

Whatever path you take. Keep blogging, and I'm surte you will be ok.

davegannon said...

Hi DG. I am sure it must be overwhelming. This girl has a blog that might be of use to you in your decision-making. Good luck in whatever decision you do make.
you can find Rachel on Twitter @CochlearImplant and the blog

Thanks, Dave (@cochlearus)

Anonymous said...

Good Luck! more and more are considering CI these days as it is not easy in this technology/industrial days (cars/telephone/etc) without hearing. Plus, It's hard to make friends with hearing people if you are deaf. According to my hearing sister, many people are uncomfortable around people who can't hear very well so they are far more likely to avoid you.

Anonymous said...

Well, good luck on your journey!

The only comment I can make is that I read that close to 70% of people who could wear hearing aids, don't. (Meaning satisfaction is at around 30%) Whereas something close to 95% of implanted people wear their processors.

Anonymous said...

While you're researching Cis, you may also want to research another area while you are at it. Not to be a pessimist here, but I often see that this is an area that people who get CI's at a later age in life often overlook.

You may quickly be able to hear sounds such as crickets chirping and the like (which may be a good thing if you like hearing sounds) but the bigger question actually should be....are you going to be able to recognize and detect speech patterns too? The CI surgery is actually the easy part, the hard part is the long and extensive therapy that is going to be needed in order to get your brain to be able to recognized and detect speech patterns, which is a totally different ballgame when it comes to listening to sounds.

I have a friend that got a CI as an adult, on her very first day of activation on the CI, she was able to hear windchimes on a front porch that was like 5 or 6 houses away. Fast forward nearly 7 or so years later, she still cannot detect or recognize speech patterns with her CI.

Either way, whether you decide to go for the CI or not, you have my support ;)

Anonymous said...

about that 70%, it is more likely they can either hear some without it (have mild or moderate,or perhap severe) or know sign language but I was not one of those 70% as I am profoundly deaf since birth and grew up oral only AND used powerful hearing aids to ASSIST lipreading. So I wore it everyday as I had no choice (I did not have ASL)

And the 95% can NOT hear without their processor (stone deaf especially due to CI surgeries) I know people love their cochlear implants but some don't really have much of a choice either if they can't hear without it especially if they don't know ASL and totally depend on sounds for communication.

BUT I do realize there are those who do have a choice. That is, they have both sign language and CI and they love their CI. Some deaf love their hearing aids (or used to love their HAs but love their CIs MORE).

I just don't think it really matter what percentage who wear HAs vs. CIs Especially when most HA users today have some hearing unaided so they CAN do fine without it while other HAs users have no choice like myself but wear it. Just saying.

Anonymous said...

Annoy 21 September 2011 04:57

I have a CI, profound deaf since birth and wore Hearing aids for over 24 years before my implant. She'll be fine, especially when she wore hearing aids and have speech and English skills. Those skills will help her use CI better. CI can assist lipreading better too. But it is still up to her.

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