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.

So,

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.)

Head

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

Spine

Updated MR Scan showed no change in tumors.

Leg

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.

ABI

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.

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