Being Bionic

Today is 1 year, 3 months and 21 days since implantation of Implant #1 and 6 months and 21 days since implantation of Implant #2. Both implants were activated approximately 1 month after their implantation dates.

I had an audio therapy session with Tami today, and during that session I realized that I’ve made a decent amount of progress over the last 3 or so months since my last entry. After reading my last entry, I realize that I am not nearly as frustrated with my implants as I was then.

I still get annoyed when the same people constantly ask “How are your implants doing?” or “Are you hearing any more yet?” over and over. Even though the answer is a positive one in that yes I have made some progress, I almost want to say “No I haven’t made any progress” just because I am so irritated with people when they ask me those questions. Obviously the doctors and therapists at the CI clinic don’t count because they have to ask that and besides, my answer usually contributes to answers for me or more progress. I also notice that when it’s people that have never asked me about them before, or rarely ask, I can’t shut up about them and I am eager to share. It’s really just family and friends that ask me incessantly, or nearly every time I see them. I know they mean well but just once, may I please have a visit with them without being asked about my progress with my implants????? I think that’s one thing that families of CI recipients need to be made aware of, especially parents of children. Too much focus on CI’s and progress and whatnot just gets tediously old. Not to mention it adds unnecessary pressure that can actually contribute to rejection of the implants psychologically, or hinder that much-hoped-for progress.

This almost happened to me, I can only imagine what the poor kids are going through with their parents putting so much weight on their child’s ability to use their implants. At least I am aware of this effect and I can say “Back off!” but the children may not realize this and think all sorts of negative things such as it’s their fault or that there’s something wrong with them, that it’s just not gonna work, or even give up, and parents and therapists constantly pushing them just exacerbates the situation. Everyone ends up frustrated and on the losing end. As a result, what could have been a wonderful experience for a child is ruined and made a psychological disaster, all because of too much eagerness on the part of a parent or therapist. Maybe I’m wrong about all this, but I do know one thing: I’M GLAD I’M NOT A KID! This whole experience would have been just awful for me. I very much admire children who are able to cope with all the stress involved with implants, because it was and is very stressful for me even as an adult who considers herself very seasoned in coping with stress.

Anyway, one thing I realized during the audio therapy is that I have made quite a bit of progress, and it was a lot more than I made in previous months between sessions. The thing is, up until today I didn’t realize it because it was so gradual, that me and my husband didn’t really notice the change. But Tami said she noticed a big difference in my comprehension and confidence. I guess one important thing for people struggling with progress with their Cochlear Implants to remember is that they might actually be doing better than they think, it’s just that it’s so gradual it’s hard to tell, and really the only person that could tell is someone that only sees you occasionally. Audio therapy has accomplished this monitoring aspect for me, as well as having helped me learn to use my implant when I got the first one.

So why the good progress recently? I think for me, not putting too much pressure on myself to make it work was key. I decided to just let myself be and let things happen naturally, to let my brain make progress at it’s own pace and not worry about trying so hard to “train” it. Once I did that, I guess things just started “clicking” without me realizing it. Getting rid of all that pressure and stress sort of removed mental blocks that were acting like “implant ear plugs” and now I’m going along at a pace that is good enough for me. I have my whole life, there is no reason to rush through and get to those goals as quickly as possible. It might actually be more effective to let my brain follow it’s own pace anyway, with just a tiny bit of nudging here and there. I still work at it, but only minimally, such as every once in a while I will stop and just listen and see if I notice any sounds that I didn’t notice, and if so, I try to identify it. Or sometimes when I notice that I am hearing a new sound, I will just stop and listen to that sound for a few minutes and meditate on it’s source. I try to listen for all parts of the words when reading people’s lips. But other than that, I don’t try to hard, and that helps keep my frustration low, my optimism high, and my pace steady. I may not be where I thought I’d be by now, but slow and steady wins the race anyway, right?

I also think that having bilateral implants has contributed very much to my progress. I didn’t notice it until recently, but I’ve gotten to the point where I almost can’t stand to only have one on. Everything sounds so much better, so much clearer with two. Once my brain gets adjusted to new maps and bilateral hearing, it wants more and more volume. I’m like an addict, especially during mappings, MORE VOLUME! MORE VOLUME! GIMME MORE MORE MORE!! (insert mental picture of me foaming at the mouth here.) Seriously though, I am really glad I decided to go bilateral because it is a world of difference than just one. I don’t think I could ever go back to only one implant.

As for music, I don’t miss it so much anymore for two reasons. The first is that how much I’m hearing now was definitely worth the trade off, the only thing I lost was music. The second is that I’m noticing I’m actually in the very beginning stages of being able to comprehend music to a degree that I might be able to enjoy it. So there’s hope!

I still have days when I am not feeling as optimistic, but I’ve stopped wondering if getting cochlear implants was a mistake and that helps with those not-so-optimistic days. I feel like that because it took me nearly a year and three months to conclude that it was the right decision, I really understand those who aren’t sure about getting cochlear implants for themselves, or those who have gotten them but aren’t sure if it was the right decision. The latter is an especially hard place to be, so for anyone that is currently in that place right now, I hope that my story helps them somehow.

My only complaints about the implants now are few. It is very uncomfortable and nerve-wracking if somehow the volume dial is up too high when I first put them on for the day. Same goes for a loud sound occuring when my auditory nerves are still drinking their coffee and trying to wake up. After a long day, the external parts leave my ears and head pretty sore, both the processor area and the magnet area. I could get a weaker magnet and that would help, but then the magnet barely stays on, so that won’t work. Sometimes the external equipment just falls right off my head anyway, which is nerve wracking when it happens around hard floors, dirty areas, or anything containing water. But despite several hard falls, they seem to still be ok. Wig tape has been suggested to me, but I am allergic to adhesive, so it’s not a desirable option. Plus in the sticky Oklahoma summer heat, ew!! However, I consider all these problems to be small ones, and I am very glad that these are my only problems with them. It could be a lot worse.