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Frustrating....

Posted Oct 01 2008 9:19pm

You ever just get frustrated that people just don't seem to GET IT?
I never wanted to be deaf, and spent most of my life basically pretending I wasn't. In hindsight, maybe that wasn't the best idea, because now that I'm REALLY deaf, seems like I'm always having to remind folks. I used the "bluff method" for years...I could hear enough that with lip-reading, I usually had a pretty good idea what was being said, and what I didn't, I could usually bluff my way out of. And with the hearing aids, I had enough comprehension that I could occasionally pick up words here and there without always having to work so hard to understand. I have heard over and over again that people just forget I'm deaf because I manage so well. I understand that that's a huge compliment, but sometimes I wish I could make them all remember just a little better.
I hear sounds, yes. I do pretty well with environmental sounds; not so well with voices. I can usually tell what a sound is just by listening. Today I was in the bathroom with the door shut and I heard a noise. "Hubby's getting his clothes out of the closet", I thought. I know that sound, and I hear it well...even though the closet is several feet away. I hear the sound of the toilet running....of the clock beside my bed ticking. Honestly, some of these sounds I've never heard before, so I'm really impressed.
But voices are still my Waterloo. I can hear them, but I can't comprehend what people are saying. I am still almost completely dependent on lip-reading. If you blindfold me and give me a lineup of several people that I know well, I can listen to them talk, and can tell you who's speaking, but don't ask me what they're saying. I'm not there yet.
Seems like people would understand that when they're told...but no. I love my family, but I can't make them understand how uncomfortable it makes me to sit outside in the dark, with dim overhead lights casting shadows on everyone's faces, to talk. I would so rather be inside, where there are bright lights and fewer environmental sounds. But I know they enjoy being outside, and I don't want to be the lone holdout, the party pooper. So I go and I struggle, and come away not feeling MORE a part of the circle, but less, somehow.
And my hubby, bless him, abandoned me to go to the bathroom at a drive-around window at McDonald's on the way home from vacation. It was BEFORE we ordered. At that point I told him to HOLD IT and gave him the order and told him to get it while he was inside, because no way in the world was I going to order it myself. I can't order at a drive-through any more than I can fly to the moon!! I know that it just didn't occur to him. He wasn't being ugly...he just didn't realize.
When I'm driving, I used to be able to mostly just listen, occasionally turning to lip-read here and there. Now, I have to lip-read everything, which basically means that when I'm driving, either hold your thoughts, or wait until I am in a position to be able to look at you when you speak. And please don't look like you're annoyed at being made to wait when I finally do get to look at you; it's not something I can help. Like I said, I worked for years to make my deafness a non-issue...unfortunately, at this point in my life, it's a big issue, so I'm having to retrain everyone around me to think a little differently, and it's not only frustrating to me, but, I think, frustrating to them, as well (which, of course, adds to my frustration again, ha!) Sometimes when I'm with other people, especially family members, I just go without my processor: when they know that I'm completely deaf, and there's no sound at all coming in, they are a little more careful, a little more thoughtful. But put the processor on, and I'm suddenly a hearing person again, and treated like one. It's a catch-22...not really WANTING to be treated differently, or specially, but really needing it.
I am hoping that a second implant will fill in some of the gaps that I've got now. I'm not asking for miracles...but would be so happy to just have things be a little better. I believe it will happen...I just get so tired and frustrated sometimes. Just keepin' it real.
There are implant users that do incredibly well straight out of activation. My online friend Amy had her CI surgery in July, was activated with her Harmony in August, and talked on the phone to her husband ten days later (followed up that performance by calling her mother and her sister!). Those stories aren't what you'd call COMMON...but they're not uncommon, either...they happen. While I don't dare hope for such stellar results, at least in the beginning, I DO dare to hope that a second ear will give me better sound quality, better direction, less frustration.
All new CI users are told to keep their hopes high and their expectations low. I can do that...especially after the past year, since I know firsthand now that it's not an overnight process. But two ears will HAVE to be better than one!! I can't wait!! :)
Sorry for the vent...but perhaps several of you have felt this way before?
<3

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