Living With Cochlear Implants (2-1/2 Years Later)
(Is it just me, or is the first sentence of a blog entry the hardest one to write?!) Okay, so it’s been almost 2-1/2 years since my cochlear implants went “live”, and if you’re curious about life with cochlear implants a few years later, this is what it’s like for me.
I wake up in my natural deaf state, and no longer cringe at the thought of how loud it’s going to be when I put on my processors. I’m not sure if it’s just that my last mapping was extra-excellent or what, but usually as months go by, things just sound louder and louder to me. I’m only going once a year for mappings now, and by the time I went in Sept. 2010 I was pretty much keeping my CIs on the ‘background’ setting all the time. This setting compressed a lot of background noise and just kept things at a better level for me. That’s way in the past now. I don’t even change to ‘background’ in the car or stores automatically, the way I used to. Now I pretty much stay on my regular listening program (at 12:00 for volume) from the start of the day to the end.
Listening with just my right ear (the worst one) is better now – voices no longer have the computerized, Darth-Vader quality to them. But I do really need both ears to understand without lip reading. If one of my batteries dies, or I slip my headpiece magnet off because the dog is barking like crazy (as I just did!) then I need to lip read to understand speech. With both processors on, I can generally carry on a conversation with someone in the room without needing to look at them.
The phone will never be my friend. I know there are people with CIs who can just chat away on the phone but I assume they don’t have the phone phobia that I have – I just hate the phone and I always have. The only way I’ll feel comfortable on the phone is if I can perfectly understand every word I hear, so I don’t have to stress out about it. That’s not the case, so talking on the phone is my absolutely least favorite thing to do. I can do it – especially with the CapTel phone (this phone captions what the other person is saying, although there’s a bit of a lag and the captions are often not accurate) – but I only use the phone if I absolutely have to, for the shortest amount of time possible. Like I said though, this is partly because I’ve never been one of those people who likes the phone. I think a couple of other things play into it for me – the fact that I still have a high frequency loss even with my CIs, and the fact that I hear better with two ears than one. I know I could probably do some kind of convoluted thing with a neckloop and putting both my CIs on T-coil to get the bilateral effect (I think…I’m not even sure about this) but the phone is just not important enough to me to make that kind of effort. Give me email or texting, thanks!
Music is pretty good now, especially with music I already know. I do practice listening to music on Pandora – I have a couple stations set up so that they play music I’m familiar with (or that is similar to that music) and I pop some headphones on and just listen. I find that if I don’t do this, the quality of music does go down for me. It also sounds better through headphones or Direct Connect. But it has improved so, so much since the early days of listening with my CIs. It used to just sound like crashing noise, especially music coming through the television. For instance, we watch House and the intro song is Teardrop, by Massive Attack. I always really liked this song before I went deaf, but after my CIs were activated it sounded truly horrific. To be honest, I usually fast-forward the intro credits/song with our TiVo but lately I’ve been known to let the House intro play through, just so I can enjoy how good that song sounds now!
I’m tempted to do the list of things I can hear now, but yeah, that can be pretty boring to read. Still though, it’s pretty cool to jump out of my seat when the dryer buzzes (downstairs!!) or to look around and wonder what the heck that noise is, only to see it’s my cat (way over on the couch) licking her paws. Come on – I never even knew that made a sound!
I don’t have superhuman hearing though … last night Paige was sputtering and exclaiming about the fact that the neighbors were having a party (on Saturday night, geez) and playing their (crappy, according to her) music too loud. Dave and I listened for a minute, shrugged and said we didn’t really hear anything. “But you’re deaf!” was her response, spoken with classic teenage exasperation. I had to laugh – she’s right about that!
So… identity, something I think I probably talked about before but it could use some updating. I imagine most people with cochlear implants question their identity sometimes, as far as the “Deaf or not deaf?” question. Before I went deaf in April 2008, I said I was hard-of-hearing or hearing impaired; that label doesn’t bother me because yeah, my hearing was impaired. It didn’t offend me to say it. And now when I wear my CI processors, I hear even better than I did back then…so do I still say I’m hearing impaired? Nah, I say I’m deaf, because I am. What I am when I wake up in the morning…I’m deaf. No big deal, and it doesn’t bother me.
So I’ll usually tell people, “I’m deaf, but I hear through cochlear implants.” I might explain that it helps me to lip read as well (if I’m dealing with someone that has an accent or a voice I’m not used to, I use every tool I can to help me understand). Most people accept this without even questioning it and just continue to talk to me as they already were, maybe making sure to look up when they are speaking. But a few times I’ve had people just stop and get visibly nervous – one guy stopped using his voice completely and would just nod and gesture to me. That’s fine too – I know sometimes they hear the word ‘deaf’ and just stop listening after that because it can be scary to wonder how to communicate. If I get a chance, I’ll point out that my CIs do help me to hear to put them at ease.
My tinnitus is GONE, folks. That was probably the hardest part of being deaf – it was not quiet like I always figured it would be. It was constant, crazy noise all day and all night, until I went to sleep. There was never any relief at all. It’s hard to explain what it’s like to hear all that noise and never be able to escape it. I’ve always had tinnitus but in the past, I would put my hearing aids on to get rid of it. My brain needed to hear something in order to settle down. Once I went deaf, there was nothing to hear. After surgery (but before activation, which was a month later), I still had tinnitus but the quality changed. I heard pretty much the same few sounds rather than a wide variety of sounds (music, talking, etc.) like I used to. Once I was activated though, my tinnitus disappeared within a week or two. It is really peaceful now if I have my processors off, because I hear actual silence! Every now and then I might get a soft sound, whooshing like the ocean or a couple of beeps or something, but it’s so soft and so rare that it just doesn’t bother me. Even at night when I take my processors off, the most I might get is some soft sounds but it’s barely enough to be noticeable…for all intents and purposes, I consider the tinnitus gone (for now, and hopefully forever).
One more thing I wanted to touch on – captions. I’ve seen a few people ask if getting CIs means you don’t need captions on the TV anymore. Like everything else, this is going to be different for each individual. For me, I still need captions. I don’t need them if the person speaking is visible on the screen and I can read their lips, but for voice-overs I still rely on captions. Sure, I can catch maybe 50% of what’s being said without captions, and I do practice this…I glance down at the captions only when I need to. We’ve also gone to some movies without open captions – we saw Avatar and Tron in the theater the first week they were out, before the open captioned versions came to our area. I didn’t catch everything but caught enough to follow the movie. So I definitely do better in this area with CIs than I did with hearing aids, but I do still rely on captions. However…my husband is also hearing impaired and my daughter loves captions (even though she doesn’t need them) so our TV will always, always have captions on!
Anyway, if you’re reading and you recently got a CI, it gets even better and better. Even once you stop going for mappings every couple months, it still gets better. What I hear now is what I remember hearing before I went deaf…and then some. I could not ask for more!