Friday, August 29, 2008


So, I know I have totally not updated in awhile. AHHH! But the unfortunate thing is that I haven't found anything that's particularly scintillating. I'm also working on moving this to an actual website since I find that the more I progress or at least the more everything goes on, I have so much to write about- so much that it might actually profit from being split up into categories instead of having one ridiculously long blog everyday. But Flash (a program often used to make webpages) continues to challenge the limits of my skills.

I continue to try and learn but I feel like I have had a lack of NEW things to write about. This is actually not true, since everyday there is always something new to discover with the implant if you only try!

I started speech/auditory therapy. I'm talking more and more, despite the fact the auditory therapy is only one hour a week! :( I'm working on getting another therapist on board. The one I'm going to right now, Katie, works at Children's Hospital. She is absolutely sweet and marvelous- very patient, knows sign, and is just an all-around fun person to work with. I really am disappointed it's only once a week. My surgeon did a referral for me to go there, even though I'm 19! The one I'm working on getting is the one who originally suggested I get an implant. She has my old case files for how much I understood with my hearing aid only. I'm eager to get those back and to test them against the implant. So even with two therapists, I'll still only get around 2 hours of "professional" auditory therapy.

This is why it's so critical that I work AT HOME and in my daily life, so I've been trying to do that. Katie loaned me the "Advanced Bionics: Making the Connection" book which I 100% recommend to any cochlear implant user. It has various exercises, CDs, ideas for practicing with somebody, and even an answer key.

I tried to speak more today- but I feel like I can't speak as quickly as I sign. So I find myself speaking the words I can and the words I can't, I'll sign. That, or I'll sign and finish saying the last word perhaps 2 beats after I've finished signing! It's a bit funny but usually it's just frustrating. I find myself wondering why I didn't speak more before? I think a lot of it is that I basically couldn't hear myself say a LOT of the words and so I felt odd. I also wasn't confident- I still don't feel like most people could understand my speaking. I want to change this though. I've found that I can actually LISTEN to how people say words and then copy them until I sound near to them. It's exciting because while I could logically do that with hearing aids before, I couldn't hear the wonderful subtleties and nuances that everyone takes for granted hearing.

I'm in Denver right now. I have relatives here that I'm thrilled to see, especially since we don't see each other more than once a year. We all keep in touch via email and texting- I usually come here every summer. I find that anytime I travel lately, I google wherever I'm going to see how their cochlear implant facilities/resources are. At the age of four, a doctor in Denver persistently tried to get my mom to get me implanted. Having known this story since I was young, I wondered immediately if they had any breaking-edge developments with implants and if, perhaps during the short time I was here, I could volunteer myself as a guinea pig. ((A guinea pig whose hearing ability is entirely dependent on batteries and the continued developments that science makes! The amount of batteries I go through every month is mounting steadily- thank goodness for rechargeable batteries which is what I have with my implant.))

I found out that Cochlear Americas ((essentially the "opponent" of MY implant company)) seems to have a headquarters here. So I doubt I'll be able to pop in for any testing or whatever since it isn't entirely compatible. Quite a shame, really, since I was really hoping I could go back and say, "Hey! Y'all suggested I get an implant 15 years ago. Would you be interested in running any experiments even if it's just to see response time or see how I experience this piece of music (Or whatever)."

I do want to visit California to go to the Advanced Bionics headquarters.... I mean, I don't entirely know what exactly my intentions are but I know I have a vested interest in going. Maybe just to tour, maybe to be part of a research study, or maybe just to meet some of the people working on technological improvements. I know if I want to be involved, I have to MAKE it happen. With the advent of school approaching, I'm increasingly excited to FINALLY have a routine. While I love my free time, I don't feel I spend it as well as when I have a schedule to stick to.

This will be my first quarter with an implant. I don't really see my approach to how I attend school becoming any different right now, although I DO wish that it would. There are options to get an interpreter who only mouths words (and I'd assume they could sign, possibly, if I requested one that could)- so that I won't look at the signs and rather, only lipread. But in a big lecture hall, I'll be the first to admit this could get challenging.... I'd have to wear my glasses everyday and sit up in the front. I have to look at what will serve me best-

I feel like I use my sign as a crutch, which people will probably laugh at when they read this. Understandable- I don't begrudge you for that. I actually do think it sounds silly in retrospect. But in the long run, VASTLY more people speak than sign. I want to be able to be part of that, despite the odds against me. I already lipread pretty well but there are times I can't seem to lipread or people are speaking differently than I'm used to seeing or I have to wait until I can pick up the topic. I think this will always be something I have to do- lipread.

So how would having to lipread in school help or hinder me? I think it works both ways- an obvious hindrance is if I fall behind or if I have NO clue what they're saying. Oops, then I miss an assignment or an important piece that I needed to know for a test! But in a positive way, if I succeed then I'll be glad I could do it and perhaps me HEARING the words exactly as I read them, will help me to learn more.

I don't know- I want CHANGE. I didn't get an implant for things to remain the same. But I know there's already been changes even if I don't notice them as much as I might notice other things that point to "success." Is this implant already a success in its own right though? Yes, it is- it serves its purpose.... to bring sounds to me that I've never heard before. But I continue to want MORE out of it.

I saw my uncles Mike and Brian and my grandma Sally yesterday night. My grandma fattened us all up with some delicious strawberry dessert, homemade soup, homemade potato salad, and.... oh. I think we can all say we were groaning at how much we ate because it was just that good. And I showed everyone my implant, of course. I was secretly really eager because I mean, I REALLY LOVE THIS THING. Mike inquires, "Can you really hear with it?" I think this is the MOST common question I get. I feel continually like I have to prove the CI does work.

The wonderful thing is, people are usually amazed by how much I CAN hear. But I always feel this anxious anticipation with ANYBODY when I'm asked to demonstrate how well I hear now- "Listen as hard as you can! Come on, show them it DOES work. Show them you didn't get your head cut open for nothing. Remember, you hear "Shhh"...." (Still loving that to an amazing degree by the way!)

My family sat in my grandma's living room, in an unintentional circle. I closed my eyes and somebody would say something. My mom wanted me to try and find where it came from (I do have stereo hearing, thanks to wearing my hearing aid in my right ear). I don't feel I was that good at it.... it's confusing but the MORE I do it, the easier it becomes, especially with feedback.

We also tried having me say what I heard- which is something Katie had me do at the last session too. She had cards with sounds like "bzzz" or "duh duh duh" on them and I had to verbally say what it sounded like to me. It sounds easy, but it really isn't, oddly.

So, I actually could say things like, "I hear a T in whatever was said." A few times I even said it was my name and was correct. I reply, when asked, VERY tentatively, with a slow halting response that is entirely indicative of my confidence in my correctness. (That is to say, I'm not all that confident, hehe) I hate looking stupid or letting down people (even though consciously I KNOW it isn't about any of that and that everyone is usually really impressed at how the implant and my brain work together).

But in short, I'm still really excited. That's all for now :)

Gloria, if you read this- I'll try and get on my laptop tomorrow to send you the thing you need for the webpage. If anyone else sees this, pass this on to Gloria! Thanks!!