Listen: there's a hell of a good universe next door, let's go

Today was my third mapping session.  (The title of this post doesn't make any sense other than maps, and here be dragons goes on maps.  Not on electronic mapping of a CI's electrical impulses, but so what?  It's my party and I'll pun if I want to!) I'm exactly three weeks post-activation today.   The first map of a CI is pretty much just "turn it on and see how much volume you can tolerate".  The programming is standard - you can't really personalize it until you start adjusting to hearing sounds in a way that you previously were unable to do, and in an ear that almost certainly wasn't hearing much at all before.  So the first week you just get used to the sounds, and they may or may not sound much like voices at this point.  Second week, more volume but not much more. But now I'm starting to use the CI for real.  This week I haven't been wearing my hearing aid.  It didn't seem like a big deal when I left it out.  I can hear with th...

I've been a little frustrated this week; the beeps and breathiness have made it hard to use the CI alone without the hearing aid, and yet if I don't, my progress will probably be slower.  So when I'm meeting with people individually at work, I just take the hearing aid out and pay close attention and usually it's okay, even though the people sound peculiar and wrong. But actual meetings with groups are right out.  I have to use the hearing aid then.  And aside from that, I'm *tired* of beeps and  the lack of clarity.  And seriously, this thing SLAUGHTERS music.  But the music is part of my rehab, and so I listen.  But this afternoon while I was doing some sound recognition drills on my rehab program, I realized that the voices were at least a little bit clearer.  Not normal by any means, and not even remotely what I'd call clear, but a bit better. Then I got up and did some things in the kitchen - cleared up the lunch dishes and made some ...

Today was a good day (setting aside the fact that I have a 7:30 meeting every Tuesday, and I really really struggle with getting up that early).  But the pain from the pressure of my processor on the incision site was considerably less than it has been. I attribute this to the fact that I just spent a couple hundred bucks on a pair of glasses with thinner earpieces and a handful of scarves to use as headbands.  At least I got the glasses at Costco so it was only a couple hundred dollars.   And it's still worth it.  It was really really nice to be in a meeting late this afternoon and not only not be in pain, but I pulled out my hearing aid and spoke to the guy I was meeting with using only my CI.  He didn't sound right, and to be honest I'm really tired of this beepy shit. But I was able to hear him, if not the people on the phone, and we got through the meeting.   And on the way home I was getting frustrated because the music I was listening to se...

I've been experiencing some improvements in my hearing with the CI; yesterday I had a meeting with two people in a small room and was able to hear well enough to do the whole thing without my hearing aid in the left ear.  This is a big thing, hearing for a meeting from the right side!  All my impulses about presenting my left side to whoever's speaking are going to have to be retrained. I can also hear my DVDs when I'm on the treadmill better, the voices aren't as beepy as they were.  The theme music still sounds pretty bad, but that will come.  I can do fine at home talking to R one on one as well.  It feels like things are going well, and the path forward looks really  positive.  I need to achieve quite a lot more clarity before I can schedule the second surgery, but I can see it coming now. Aside from trying to function without my hearing aid and doing my rehab via music listening and TV-watching, most of my activity around the CI this week were...

I'm almost a week past activation now.  There's been some incremental improvement in the sound, but it's a slow process.  My brain is, I think, protesting - something about old dogs and new tricks, to which I say, shut up and get back to work, you slacker! I had my second appointment with my audiologist today; she insisted that I'm doing well (even though it's been SIX DAYS and it's not even close to perfect)  (have I mentioned that I lack patience?) and that it's a process that will take some time. She also bumped up my volume so now the beepies are louder - but so are the voices.  I  had a pretty dang functional conversation with R when I got home today, and that was cool even though his voice - all the voices and all the sounds are still accompanied by beeps.   I'm trying to decide whether these sound more like a demented toddler pounding on the keyboard of an early '70s synthsizer (like, you can play it on a Moog, man) or the spaceship in ...

Today was the day:  activation.  I had a short appointment with the surgeon first, to confirm that everything was okay.  (It is.)  Then across the hall to the audiologist.  First we did a quick hearing test - it doesn't look like I have any remaining natural hearing in my right ear, but apparently there is still some liquid in there and we'll test again next week to make sure.  Then we had to map the electrodes, but that didn't take all that long, and soon my CI was turned on.  The sound is really odd. "Beeps" isn't really what it sounds like, but it's probably the best description.  We kept on turning up the stimulation level on the electrodes and increasing the volume, and eventually the sounds started taking some shape.  Eventually (keep in mind, this was all happening inside about 45 minutes, so "eventually" is probably not the best word) I began hearing whispery voices among the beeps and then actual voices.  I was able to hear ...

Last night on my way home from work I got my hair cut.  It was a little past due, but I wear it so short that there's some close trimming around my ear and I haven't wanted to go till now. But I went, and then explained to the woman who cuts it about the surgery, and showed her the incision and the implant bump and asked her to be careful.  In fact the incision hasn't bled outside the OR, but we talked it all through and she was careful and it was fine, the only thing that happened was that she bumped my ear a couple of times and triggered the nerve pain.  But as I told her, I may jump but you're not damaging anything. Afterward I realized that I managed to turn a haircut into almost as much of a concern as the surgery itself, which is beyond silly. It's odd what I can find to get all wound up about.

So yesterday I was talking (this being me, not actually talking, but online chat) with a friend, about whether I'd lost what hearing was left in my right ear with the surgery, and what that means. The fact is I can't tell if I lost the residual hearing in my right ear.  There was so little of it anyway that I haven't been able to hear anything on the right without a hearing aid for several years.  And six or eight weeks ago my right hearing aid died.  I didn't replace it, because why spend $3000 on something that will go away once I'm implanted? But I won't know until Wednesday whether the pathetically small bit of hearing that remained has gone with the surgery.  There's at least a 50% chance that it's gone.  I think testing for that is part of the protocol in my two-hour appointment for mapping and activation, but I will ask when I arrive anyway. Because my right ear has been bringing so little to the party I haven't really paid it any attent...

All that agonizing that I did whether to go bilateral in one surgery?  HA. Although I'm more certain than ever that I will try to get my second ear done yet this year, I've come to realize that the reason NOT to do them at the same time is something that wasn't even discussed by my medical team or by anyone on any of the CI forums that I've seen. Namely, sleep.  Something I haven't been doing well because the implant site is still way too sore to put the weight of my head on.  I can go all day with essentially no pain at all.  I can still feel the thing in my head, but it's doesn't hurt, it's just there, like a corner of my foreign head that is forever Austria.   But let me roll over onto the right side of my head while sleeping and damn.  Hurts enough to wake me up.  Part of it's the implant, but part of it's my ear, the top rim is still quite sore and tender - again, only when touched, but rolling over on it will most definitely get my ...