Ahhh!

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!!

Pitch Perception Test- Real Time Reporting!

As I've mentioned before, I LOVE the pitch perception test (Link found in the right column). It is challenging enough to be wildly interesting, delivers feedback immediately so I can integrate learning into it, and I feel it helps me notice my improvement (or lack thereof) in sound perception.

So... here goes. I find it helps to play it more than once since your results do improve with practice and it takes a bit to get into the "groove." Speaking of groove- let's get grooving with my results!

Hearing aid only (right ear has a profound hearing loss but can hear sounds well above 30db with the hearing aid):

Just for technicality's sake, I wear an Oticon hearing aid (not the best at all) on volume 4, which is the max. I used to hear things with volume 3 but now prefer 4. Whether this is due to my hearing declining or the hearing aid's quality, I'm not sure. There are extremely good high-tech hearing aids out there and then there's the basic ones. Laptop volume is at 51, which is fairly loud but not extremely loud.

It begins at a 96 hz difference. I got down to 24 hz fairly easily, with a few errors which I immediately try to file away in my memory. I get down to 3hz.

This is when I realize: Have I ever gotten down to 3hz? And also: "Has having the implant in already helped me THAT much with pitch perception, even when I don't have it in?"

I am at 1.5 hz now. The sounds don't seem that hard to discern and it seems odd that I would usually be unable to go below 6hz. My personal best was probably 4 or 3hz, on very few occasions. I would usually end at a 24-12hz or begin failing at 6hz pre-op and with only a hearing aid. I hadn't been practicing at this test since before my surgery which was a month ago!

I'm surprised. This is with the hearing aid alone, POST-implant. I would love to consult some surgeons or neurotechnicians to explain why this is happening. Heck, make me into your guinea pig if you wish! It's still not within "normal" scores, though, I believe.

It creeps slowly down, 0.75 hz, 0.375 hz, and with that the test is over. I've moved from a "possible pitch perception deficit" to being in the "low-normal" range. WHAT? I now can qualify as "normal" (albeit a "low" normal), despite my hearing loss?

I think of the Seattle Children's Science Museum and this incredibly fun room filled with body-measuring apparatus and activities, such as "How far can you reach?" and "How long can you hold your breath?" One of them is a TALL "sound measurement" scale. It looks like the "How hard can you hit?" tower with the light bulbs at some county fairs and amusement parks. Except it makes a beeping noise (That I've never heard, I just know it does because it says that on the directions). I was never able to play with it because I could never differentiate the pitches very well AT ALL. Well. I want to go back, see if that thing is there, and play it and see the lights beam up!

I am sitting here, blogging LIVE as I'm taking this test. I'll admit something: I was desperately, secretly afraid that my pitch perception would take a weird dive for the worse for some bizarre reason even though the opposite should occur with my brain's newfound pitch ability. At least with my hearing aid, it hasn't. In fact, with the 4th taking of this test (After hundreds in the past) I have, for the first time, moved from Level 5 (Possible Pitch Perception Deficit) to Level 2.5 (Somewhere between Normal and Very Good). Woah!

Now... to try it with the implant alone. The sound adjustment sample sounds high and wailing, penetrating right into my head (and indeed it is!). Nevertheless, I hear it, which is all I need for right now. The volume on the laptop has increased from 51 to 64. The sounds no longer sound rich and tolerable- they are screamingly high, whiny as a toddler without a nap. My head begins to hurt before I am even through with the first pair. I push on, however. I notice that the "lower" pitches are almost imperceptible but noticeable since they "FEEL" lower and SOUND quieter in my head even though the volume remains the same for both pitches.

No score is given because my pitch perception was too wide for them to measure. That is to say, I fail. My head is throbbing and I wonder if the volume on my processor is too high. I pull the magnet-processor off my head where it falls limp against my palm, flashing its lonely red light. The volume is all the way up. I sigh, haunted by the thought that the louder it needs to be, the worse my ears are. But, of course, this isn't a hearing aid and if it's all the way up it just means my comfort level for sound has increased much more since Mapping #2, which is good. I wonder if it signifies, "My brain is ready for MORE!!!"

I decide to go take a break for a few minutes before I return.

Stitches Out!!

Yay!! I got my stitches out today! It is one week and one day since my surgery.

But... why didn't anybody tell me it would hurt?! OH MY GOSH. It really hurt because the stitches were tight and Dr. Rubenstein had to get little scissors and fit them under the stitches and snip them off, and of course the stitches moved a bit when he cut them.

There was a point where I stopped him and just asked, "Is it SUPPOSED to hurt?" He smiled sweetly and answered, "Just a little bit."

Liar. You were nice today- really really nice, but it wasn't "just a little bit."

I had intended to take aspirin right before my appointment (clever me!) but forgot (not so clever!).... but at least they're out! And the doctor says they're healing perfectly and right on track. Yay! :)

A lot of the staff came around to say hi, including Tina (audiologist) and her assistant... they all seem excited for me. It's really wonderful seeing the level of care they possess.

It's great having the stitches out because now it doesn't itch quite so much. (I never knew how much a TINY bit of thread could itch and make you crazy! Definitely the proverbial single straw that broke the camel's back.)

It isn't bleeding and didn't at all when the stitches were cut. So, my fear of my skin splitting open, bleeding and revealing the white boniness of my skull...... totally soothed.

I'll post a picture later :)

Hope everybody is enjoying the warm weather- I know I am. Especially since the doctor said, "You can resume normal activities."

Summer, here I cooome! I got books from the library and have plans so I'm not bored anymore :D My best friend Tess should be here any minute!

I have a SPEECH CONSULTANT appointment scheduled for July 30th at Seattle Children's Hospital.... I reallyyyyy hope I get approved because then I'll get to have speech classes every week. I really want this. I really really do.

**edit** I found out July 2nd, on my 2nd mapping the day after activation, that I don't need to get approved- I already am! EXCITING!! :)

Activation is July 1st. Yet another countdown begins... I'm actually kind of glad it's in a week, because that gives me a week before I wear it and REALLY devote myself to learning all that I can.

The way I look at it is, infants have one year (plus some!) to basically adjust to the world around them and learn about sound and I won't have this period of "silence" and "total brain devotion" to learning.... so I'll have to work extra hard. I can't just expect it all to come to me subconsciously although I do think our brains can be extraordinarily self-adjusting!

I plan to listen to (See my Useful Links on right) online spoken word-tests, pitch perception, lots of listening and asking people what the sound is, and whatever resources the hospital can give me or Hearing Journey's resources. Any other ideas, folks?

I'm afraid to do the pitch perception test after activation, because I tried so hard on the pitch perception test so many times and did fairly well but not as well as I'd like.... and I'm afraid that my pitch perception score will only improve a small amount...... it's the big "A" that gets me here- ANTICIPATION. But it's also what sustains me ! Excited, excited.... :D

Just a funny note: I met some deaf customers at my Starbucks the other day, and they were surprised to find out I was deaf when they asked how I could sign. One of them mentioned they grew up with the oral method and I accidentally burst out with, "I wish I had grown up oral deaf! Lucky!" --- they both looked at me, amused. Yes, that isn't something most deaf people would say.