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Three years ago, I woke up on this day and put on my hearing aids.  I didn’t really expect to hear anything; the day before was my doctor appointment/hearing test when I found out I was totally deaf in both ears.  But still, there was that little hope that maybe they were wrong, maybe my hearing was coming back.

Just the act of waking up and remembering my hearing was gone made me sick to my stomach.  Another day of working so, so hard to understand what everyone was saying.  All I had to rely on was my speech reading skills, with a few signs and finger-spelling tossed in.  My mind was just in constant turmoil; I wanted to curl up in bed and cry and refuse to believe this was happening to me, but I had my kids to think about, candles to make and ship.

The first entry in my blog was called “Hindsight is 20/20.”  In that entry, I was looking back at that day, wondering if it would have mattered if I had realized all those ‘weird hearing’ moments were actually a sign of things to come.  Maybe I would have gone to the doctor sooner…would that have helped preserve some of my hearing?

Now, though, I’m thinking that I wish I could have looked forward from that day, or that time in general.  If I could’ve seen myself today, right now, sitting here typing and hearing the keys as I hit them, hearing the door slam as Dave goes out to the garage, hearing Toby’s doggie nails as he walks across the floor…well, I could’ve been spared so many days of sadness.  I would still have grieved losing my natural hearing, because nothing can bring that back.  But if only I had known that this absolutely amazing technology would let me hear things I’d never heard before!

I was talking to Dave about the fully-implantable CIs they are working on –you have to have surgery every 10 years to replace the implant because the batteries only have a finite life (of course).  As we debated the pros and cons, I realized that I really like the situation I have now.  I really don’t mind being in my ‘natural’ (deaf) state when I’m sleeping, for instance.  If I had the added input of noise and sound, I’m not sure how well I’d be able to sleep.  Even when I still had some hearing, I took my hearing aids off at night and had a much reduced level of sound coming in.  I’ve basically never had full hearing while I slept.  I definitely wouldn’t want to have surgery every 10 years!!  On the other hand, it would be awesome to be able to hear while I was swimming, and to not worry about getting my CIs wet if it’s raining.

Right now I feel like I have the best of both worlds.  Who knows what the future brings?  Someday I might write another blog entry referring back to this one, talking about all the wonderful advancements I wish I had known about back on April 17, 2011.  😉

One Year

One year ago today I saw the doctor and it was confirmed:  I was profoundly deaf in both ears.  I consider yesterday, April 15, to actually be the ‘anniversary’ of my going deaf because I knew my hearing was totally gone on that day.  I just happened to have the doctor appointment on the 16th.

You know that feeling of waiting for the other shoe to drop?  Kind of a vague fear of a future catastrophe…not that you want it to happen, of course, but feeling like you just know it will happen someday?  For me, it was going deaf.  For 15 years I had this very repressed, subliminal fear that I would lose all of my hearing…and then what would I do?

Although I’ve lived with hearing loss pretty much all of my life, my hearing was stable from the time my loss was detected, at age 4, until 1993, when I was 28 years old.  I was so used to it, and wore the same hearing aids for so many years, that I didn’t even really notice it.  It never occurred to me that my hearing might get worse.  We had no idea why I lost my hearing to begin with but it was assumed that it was from a high fever when I had roseola as a toddler.  I figured it was a one-time shot and never gave it another thought.

Then in 1993 I suddenly lost the little bit of hearing I had left in my right ear.  It was shocking and unexpected.  Although I already had a severe-to-profound loss in that ear (so it wasn’t like I lost a ton of hearing) it was still an earth-shattering event for me because that was the ear in which I wore my hearing aid.  My left ear was considered good enough, with a moderate loss, to not need amplification.

In one fell swoop I was faced with the fact that my hearing loss was possibly progressive and might get worse in the future, and dealing with suddenly only having one ear to hear with since I had no ear mold or hearing aid for my left ear.  It took a good two weeks to get a new ear mold made for that ear and to be fitted for a completely new hearing aid, a bi-CROS system.  During that two weeks I actually tried to squish the old ear mold into my left ear and wear my current hearing aid, so that I could hear at work and during social events.  (I specifically remember a baby shower I attended for my cousin during that time, and how isolated I felt because I had no idea what anyone at my table was saying.)

Once I tried the new bi-CROS hearing aids, though, I was amazed.  The transmitter I wore on my ‘dead’ right ear transmitted sounds via radio frequency over to the receiver I wore on my left ear.  Once again I had the sensation of hearing from both ears, and my world normalized again.

The first couple of months after I lost my hearing the first time were scary for me because nobody could tell me why it had happened.  I wasn’t sick and had no warning signs.  They did a CAT scan and blood tests, tried me on a regimen of steroids to alleviate any possible swelling that would’ve caused the hearing loss…nothing worked and no causes were found.

After a couple of months passed and my hearing stayed the same, I stopped actively worrying that I would lose more hearing.  The fear sank to the far recesses of my brain and remained there.  Every now and then I would bring it out and toy with it:  How would I deal with further hearing loss?  Would I feel like life wasn’t worth living?  Would I become bitter and nasty to my friends and family?  Would I retreat and become a recluse?

At the time, I didn’t know anything about cochlear implants.  I learned about them in the late 1990s and even then, it seemed like they were only an option for people with no hearing at all.  From what I could tell, they would enable a profoundly deaf person to perhaps hear some loud environmental sounds but that was it.

Life went on and then the other shoe dropped.

In a way, there was a weird sort of relief that this had happened and I survived it better than I ever expected to.  I look back and say, “Oh!  I went deaf and actually dealt with it better than I thought I would.”  It’s over now…I can’t get any more deaf than I am, right?

I do still have this little fear that something might happen to my implants so they don’t work anymore.  Becoming deaf as an adult is totally different from growing up in a community of deaf people who use sign language.  Since my world is a hearing world, I have to adapt to that.  Dave and I have a version of sign language that we use and it works for us, but it’s not ASL.  I can’t benefit from a sign language interpreter, for instance.

For now, all I can do is assume things will continue the way they are and my cochlear implants will continue to work for me.

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