Wednesday, February 18, 2009

To cure or not to cure...

Tonight, I informed my mom I got the medial records release forms sent off. Then mom started off on how she doesn't understand why I couldn't wait a few more years for the hair cell regeneration... What? How many times do I have to have this discussion with her?

I'm not looking for a FULL-OUT cure to deafness. With a cochlear implant, I'm still going to be deaf when it's turned off. With the hair cell regeneration, I'd be hearing again, 24/7. I don't want that. "Then what do you think the cochlear implant is, not a cure?" In a way, it's not. Yes, it's another way to hear, a better way to hear than with hearing aids, but it is still NOT a cure, like the hair-cell regeneration would be. I hate having this sort of discussions with my mom. I know she wants for me to be hearing again, hearing well and keeping up and all that jazz. But I myself, do not want the magical miracle cure that would make me a totally hearing person again. I really don't! "You get all these ideas from Jo!" Uh actually, no I don't. My brain, my mind, my thoughts, MY FEELINGS. I mean, Jo understands where I'm coming from, she really does, and she's deaf herself. She herself wouldn't want to go for the full out cure either (she might do the hair cell regeneration in 1 ear if it was available and truly does work, but thats it).

I don't even see how hair cell regeneration would even work if the cochlea is ossified.. It's bony substance, how would the hair cells grow back? In a normal non-ossified cochlea, I can see that happening. But what about the ossified cochlea for those who have had meningitis (ossified cochlea is common among those who have had meningitis). I don't know. But, it's talks like the one we had tonight where I end up feeling offended by my own mother because she truly doesn't understand. She says she "gets it", but I don't think she really does. And no one even really know how long it will be before the hair cell regeneration would even be available, it could be years! Why wait YEARS, when I could work on getting a cochlear implant and possibly have it however soon I can get one? The cochlear implants are available NOW, and they are constantly improving technology and doing what they can to make sure the new processors will work with older implants. And once you take off the processor, voila deaf again.

Yes, I've struggled with being deaf, and get frustrated. But, I just could never go for the all out cure where I'd be perfectly hearing again. I don't want that. I've accepted deafness, it's a part of me (even though there have been times when I've hated it). But I just wouldn't do the hair cell regeneration. I'm sure I'm not the only deaf person who feels this way.

This post probably doesn't even make much sense.. I don't know. Mom keeps telling me I was making no sense tonight when we were "discussing". Oh thanks a lot. I'm just offended that she would think I should wait it out and go for the all-out cure, when I have told her several times in the last few years I DO NOT WANT THE CURE.


Miss Kat's Parents said...

I have heard that the very first human trials for this kind of medical intervention will be at least 20 years away. Do you want to wait that long for something that will be very basic, and experimental? I would prefer (obviously, because I got my girl a CI) something that is well tested and shown to be helpful and successful.

Wendi said...

I can't speak definitively, but I don't think hair cell regeneration is just 'a few years away'. I get the impression it's something that wouldn't be a reality until far in the future.

On top of that, even though CIs have been around for a long time (longer than I ever realized, LOL)...look at how far they've come since they were first on the market. You would want to wait until they had a number of years to work out the bugs and see how it works for other people (hair cell regeneration, that is). I wouldn't jump in and do it right away, even if you were inclined to do it to begin with.

I can only speak for myself, but my CIs have given me my life back, NOW. I would not hold out for a 'maybe' option available at some vague date in the future, even if it is more of a cure, versus taking care of things right now. The sooner you exercise that hearing nerve, the better. I can definitely tell a difference between my ear that's been deaf the longest and my other ear, which hears much better with the same technology.

I'm rambling but the gist of this comment is...I support you and totally understand. :)

~ Wendi

JennyB said...

I'm with you - no cure for me!

I can understand that you feel offended. If deaf is part of your identity, I am sure it feels like your mother is trying to cure "you" not only your hearing loss. At least that is how I feel when people push that stuff.

Go for the cochlear implant if you are a candidate! As Miss Kat's mom said why wait when you can get something that is tried and tested NOW!

CDM said...

Oh I'm not going to wait. I'm going to get back on the CI track and get going! Just wish my mom would quit bringing up the hair cell regeneration subject.