Diagnosis to Float

There have been some really amazing things happening lately!!! Where to start…
OK, I guess my implant—I am hearing soooooo much now! Things are sounding near “normal” in that female voices sound high, males low, clicks and taps sound like they should. I’m listening to a LOT of my old music… I still can’t hear it like I remember it, but I can get enough of the rhythm and bass to fill-in the lyrics… I hear the voice part, but can’t tell what they are saying (I guess that’s true for everyone to some degree “he’s got the whole world in his pants”). It is really neat, though.

Best of all, I am understanding speech even better. People have to talk a little slower, but I hear a lot of what they are saying. One-on-one I do a really good job communicating. It helps when the person talking to me has normal-sized lips, no facial hair, speaks clearly, and doesn’t smile :) so that I can use my lip-reading too. Some people are easier to talk to than others. Usually I get the most from a conversation when I can relax.

Overall things great…

but had to vent some more (while I’m thinking about it) regarding my captioning situation.

I think if I write it down somewhere it helps to 1)forget about it <at least in my immediate consciousness> and 2)it takes care of itself faster.


before all of my hearing was lost, I attended several lectures/presentations/speakers outside of the regular routine of school. (even when extra-credit wasn’t involved… because I sincerely wanted to—it was viewed as part of the University experience)

I even took the initiative to take my FM system (portable) when my hearing deteriorated. I did not hesitate to do this.

Now, I am finding myself in a situation where I really want to do something… hear intellectual lectures.. and the lack of sufficient resources (specifically captioning) is a barrier.

We need a solution.

I am not conceding my education due to challenges.

This barrier will be traversed.

Time for rest!

After doing some more reading on mailing list—

about rehab after vestibular surgery…

that you have to retrain your brain to accept the way things are (even though they are way different than before the surgery), is the way things are supposed to be (normal…).

I had never thought of it that way with that part or my brain/body…

It was quite apparent that my hearing was “new”…

it made sense that I was re-learning how to hear.

But with balance and motor functions..

just amazing.

I can recall some of the frustration—

the brain/mind thinking that these are remedial, simple tasks, but the body not cooperating…

it is much similar to how now with my little left-hand finger… how my brain tells it to resist movement, but I can not “push” against even a weak force.

All of this really supports that:

I (and humans in general) am very adaptive…

Work through situations… new strategies.

It is simply amazing at how much my body has (had) to adjust to functioning with abnormalities. (well, maybe not so simply…)!

And again, Mom was right when she would harp on me about the importance of rehab—

and doing all of the exercises as soon as I could.


I think there is a lot to be said about our ability to adjust to change. In my opinion, it is not specific conditions that complicate our lives, but the changing of conditions and the necessary modifications that must accompany them.{Although this is also what makes life exciting!} I guess this is just a culmination of all of my experiences. The conditions are not so bad in themselves, but in relation to prior existing conditions, they pose distress. Most certainly because negative change results in loss. Humans are so accustomed to a lifestyle of acquiring. It is a natural process of everyday. Eating, shopping, learning, etc. We often do not even realize the daily gifts we receive from others. (friendship, etc.) As I think about this, I believe it is so because as we acquire things, we move into a state where we have them… where we can depend on them. When we lose things (both material and immaterial*), we are displaced from our position. A part of our foundation disappears.

Addendum (07/2006)
* Intangible is closer to the meaning I was trying to convey.

I suppose it is only fair that the next section be on the up-side. I am happy to say that despite all of my other medical appointments (Oh, I forgot to mention my eye and dentist appointments. No cavities!), I did make it in to my audiologist in July to test and re-program my Auditory Brainstem Implant (ABI) Speech Processor. (Before the summer, I thought I’d make at least 4 trips down… but I am (kinda) happy with the one.)

I go through a whole battery of testing since it is still an experimental device. One set of the tests consists of a video monitor set-up in a sound booth. A speaker is shown and the audio is played through the speakers. Then only the speaker is shown (no audio). The intention of the test is to see if the ABI is improving lip reading skills. The funny thing was that I did 80% better than the last with just the lip reading whereas my lip reading and implant score was only a little improved. Another test uses environmental sounds such as a car horn, baby crying, girl speaking, doorbell, vacuum, etc. I am given a booklet that has four pictures on each page. A sound is played and I have to guess which picture matches the sound and then go to the next one… (I know, it sounds rather remedial.) I was very excited to take the test this time because I could actually recognize quite a few of the noises. Now, it is in a controlled setting (the sound booth), but it is still exciting to know that the potential is there. I then went through the numerous exercises required to program the ABI. The ideal situation for me is still a quiet environment with a speaker I am used to communicating. (It also helps to have a good idea of what the subject of conversation is.)


Continuous headaches(severe in the a.m.), make it difficult to concentrate.


Updated MR Scan showed no change in tumors.


Pain has increased in frequency and severity (hurts almost all the time).

Low response to pain medication.

Noticeable weakness.

Needle-like sensations in right foot (arch) and toes.

MRI scheduled for Friday, August 29, 1997 to investigate possible schwannoma/neurofibroma.


Testing and re-programmed in July. Progress has been stunted by other physical ailments.

ABI on for 14 hours (battery getting low). Didn’t get headache until late-night.

Still tired.

Talked to Carl for awhile.

Talked to Dr. Pyrak-Nolte. She is genuinely concerned about me – easy to talk to. Possible to reschedule exams if conflicts exist.

Met with environmental geology group – it felt good to let more people know what the deal is with me – getting to know more people in my major.

First mineralogy lab — I started out totally lost and left with a pretty good idea about what I was doing! It should be a pretty rewarding class!

I feel a little overwhelmed with all of the reading that I have to do for tomorrow. I’m still having difficulty focussing and my theology and env. geology books have small print.

I got a headache when I got up to brush my teeth, so I took a pain killer. Also been taking my calcium/vit. D tablets.

Gotta go read and get some sleep.

Pretty good day.  Still exhausted.  Got a lot of sleep last night.

First day attending Theology and Environmental Geology — a lot of reading to do for both of them!

ABI on for 6 hours (took off when mom washed my hair and didn’t put it back on).

Mom talked to me about talking to the 14 year-old girl who also has NF II.  I would be really happy to, but I also realize this would have been better if it had happened a year ago in view of the uncertainty that plagues my life at the present.  I’m attempting to maintain a balance in my life right now — school/relaxing/resting — not doing too bad even though I’m still exhausted.

Dr. Marley called to check up on me (apparently Dr. Silliman asked him to before he left town).  It’s nice to know that he’s concerned about me.

Welp, gotta be getting to sleep . . .

Got to bed at 11:00 last night, but worke up at 1:00 with leg pain and slight headache — up till 4:00 — Uugh!  Classes went fine.  Met notetakers — looks like everything will be good.  Noticed numbness in left little finger (when typing on computer).  Legs sore.

Nothing unusual with ABI.  Tinnitus still strong.

Do get high-pitched beeping.

My spirits are a little better now that I’m doing some constructive things, but I still miss my smile!

Had ABI on for 12 hours. (kept it on during classes with FM system — everything fine).

Gotta study for my math quiz.

Another exhausting day!

Main observation today:  difficulty in focussing my eyes.  (have to blink / rub them several times)

Met with Thong at computer lab to go over Calculus III stuff.  (Got very tired walking)

Wore ABI for 6 hours.

Tinnitus acting up in both ears today.

Went home to get hair washed.

Busy day for tomorrow — going to bed!

Rough night last night.

When I woke up this morning, it seemed as if the tinnitus in the right ear was decreased, but as the day went on, it returned to normal.

ABI on from approx. 12pm – 11:30pm

Returned to N.D. — everyone happy to see me!  Talked to Sr. Annette — let her know if she can do anything!

Went to Macri’s downtown for Alicia’s birthday dinner.

I’m still felling very worn out and a little down.  Mom was right, though — it is nice to be back around friends!  I can’t help but worry about getting caught up with my classes… sometimes I think it would be a lot better if I wasn’t such a conscientious student!  I must not stress myself out!  I have to make an effort to relax (how ironic)!

I’m hopeful things will bet back to being in the groove soon!  I don’t like having to be so dependent on everyone else (although I am extremely lucky to have so many people who are here to help me!).

I feel kind of tense with a slight headache — I am taking a pain killer to take care of this (it should also help me get a good night’s sleep).  I am a little concerned about me being able to rest without taking a pain killer, but I guess I can worry about that another time.

See ya next time . . .

same bat time

same bat channel.

I decided to give myself a day of relaxation today — no ABI / no classes. I did call Mr. Howland about notetakers, etc. –still need 2.

What an exhausting day! I underwent all of the audiologic testing today. (environmental sounds, vowel recognition, consonant recognition — with lipreading/implant separate)

Used single channel program — wanted to improve it, but must use old processor to do it. I was too tired to try it today, so we’ll try it in a month when I come back.

Back to the testing: I had a difficult time with the lip reading/implant part for sentences because of the distraction of the loud masking noise in my left ear. Next time I will sugesst reducing this noise (the ear plug may be just as effective).

Left the implant on for the rest of the day. (I can’t really tell that I am even wearing it usually.”

Windy ride home.


In the morning, I worked with Kim and Wendy trying to pair up channels to get the mostsound without physical stimulation. Still experienced some dizziness from last night’s program. Tried new program – just a minor amount of dizziness. Left the implant on for lunch. Experienced vibration every once-in-awhile. Took little nap.

In the afternoon, I worked with Wendy to try to improve the program. Found that I could not rank the pitches. (I heard a simultaneous high and low tone — probably from my tinnitus.) Channel 7 produced only a high tone without any vibration, so Wendy made a single channel program for me to try for tonight. With my left ear plugged, I could hear with the implant, although speech is very faint. I find that it takes a little bit of time before the implant picks up the speech after the program is put in and the unit is turned on. I hope the signal keeps getting louder as I wear the implant.

Wendy showed me and gave me all the accessories and explained how to care for and use them.

Not as long of a day as yesterday, but I’m still pretty worn out. I am keeping the implant turned on at 2.5 for the rest of the day.

I did not experience any vibration until I was eating dinner in a restaurant. (It only occurred every once-in-awhile.)

Watched Jeopardy! with left ear plug in. Did not really hear much of the television with the implant, but I could tell when my Mom was talking on the telephone. I took the implant off to take my bath/shower. My skin is peeling all over for no apparent reason — it’s kind of freaking my Mom out! I hope everything’ll be alright. As Carsenio would say, “this is really some weird, wild stuff!”

Welp, here we go. I’ve been meaning to start this thing for several years now, but just haven’t gotten around to it… no excuses, no particular reason (other than being busy and trying to get used to things without thinking about them too much). If this turns out to be my autobiography, I could probably start writing tonight and not stop for a very long time… but seeing as I’m kind of worn out from just today’s events, I think I’ll save the last 19 1/2 years for another time…

Today was the initial stimulation of my ABI (Auditory brainstem implant). Thrifty and strong me, I decided to have us (my mom + dad + me) drive down this morning instead of spending last night in the hotel. We left around 5/5:30AM. The ride was pretty smooth, but I wasn’t able to get much sleep (although I wasn’t feeling nervous).

Our arrival at Indy was a little late. My first appointment was with Dr. Campbell to do the post-op neurological evaluation. He was still in Florida, so his assistant, Sandy, did it. I must say there were a lot less pin pricks this time! (The pain/tumor? in my left knee are being put off until my next visit.)

Jill and Fred were waiting at Dr. Miyamoto’s office (Travis will be coming later–after classes). Went back to Kim’s office. (Wendy and Ann–other audiologists I’ll be working with, also Christine the Cochlear Rep. and Dr. Yu to run the EKG machine.)

Small scissors were used to clear a site for the external part of the implant. The implant was activated!

It did seem as though the initial tones were coming from my right side. I was able to distinguish between high and low sounds, and sometimes when the signal emitted mostly a vibration.

Tests were done to see when I first sensed the signals to determine which channels will be effective. Also stimulated, however, with some signals was a movement and some blurred vision in my left eye, a small twitch on the left side of my mouth/bottom part by my nose, and tickling in my throat.

Next, used loudness chart to set-up some simple programs/tried turing it on to hear speech — mostly vibration; very faint speech (maybe from good ear, even though ear plug was used).

Took a break for lunch. I decided not to wear the implant to lunch because I was very tired and thought I could use a break.

Travis showed up for lunch. Mom and Jill went to the hotel to register while Travis, Dad, and I stuck around Riley’s.

Afternoon testing: Just re-ran a lot of the morning’s stuff, installed new program — vibration at volume of 2. Given instructions for use/owner’s manual. Wanted me to wear the implant as much as possible for tonight (even try plugging up left ear for an hour or so).

After I got off the elevator to leave, sudden dizzyness struck me — Whoa! Very weird! I’ve never gotten drunk, but I think I’ve still had the experience!

Decided that it would be better for me to just start out fresh tomorrow instead of over-doing it tonight (other programming/stimulating techniques they can try).

Travis got his car to drive me to the hotel. Got there safely/still kind of dizzy. Dad went home. I had an Arby’s Roast Beef sandwich for dinner and hit the sack for a nap. Woke up after about an hour — my Mom said I had some twitching while I was sleeping.

The dizziness has gone away. Sat in chair for awhile, watched I.Q. on HBO (pretty good movie!). And now here I am! No, wait, now I’m here. (Ha ha!) I feel a bit better since my nap, but I also feel a little tense, in general. I am contemplating taking a pain killer before i go to bed to make sure I get a good night’s rest — tomorrow will be another busy day!