In My Head

...Joining the collective

21 04 06 Joining the collective

I'm officially turned on, and I don't like it. How's that for a paradoxical sentence? I'm going to try to describe the day but I'm not sure how coherent this will be.

My activation appointment was for 1 p.m. today. I had been told the appointment would last for three hours. Joining me were Mom, Dad, Aaron and Samara. We told her it would be long, and left it up to her whether she wanted to come. We brought a backpack filled with activities so she could occupy herself. Adapting something Chris said, my parents were there for my deafness, so it was only fitting that they be there for my hearingness.

Aaron asked me last night who I wanted to hear first. I hadn't even thought about it, and it was a difficult question. Do I pick one of my parents, since it's because of them that I'm where I am today? Or do I pick my daughter, because she'll have been impatient and would really get a kick out of the special honor? Everyone immediately and independently thought it should be Samara. I think we were all kind of expecting that my CI would be turned on after the psychophysical loudness judgments the audiologist said she had to do, and I'd hear a voice and know it worked. Well, not quite...

When we got there, Sharon had the CI hooked up to a computer. I was curious to see how it'd feel having the coil stick to the magnet in my head. It was hard to find the magnet at first, especially since it's practically at the back of my head. Hours later I'm finding it quicker. She actually recommended not pulling all of my hair back and using some as a layer. It's not good for my skin to have such close contact all the time, as it can get damaged. We ended up changing the cover of of the coil to match my hair because it didn't blend in as well. I'm not trying to hide it or anything, but the default color really doesn't go with my hair. If it's on right, you can't really see it. The coil goes right to the magnet with ease, and doesn't feel heavy at all; I barely notice it's there. The behind-the-ear (BTE) processor is heavier; it's also thick and long -- compared to my hearing aid (HA) -- because of the battery, so that'll take some getting used to.



Sharon turned the CI on and asked if I could hear anything. I did when she was prepping the CI for the program and she said some people hear that. She then provided me with a chart from AB that has a range of sound volumes. I can't remember the exact categories but they were something like this: Threshold (barely perceptible), Very Soft, Soft, etc. The ideal level for me today was to attain a specific loudness in the comfortable range.

After a while, I started feeling dizzy. Then I realized the pulsating waves in my head were the sounds. As Dad commented, the only thing previously in my head was dizziness, so now that there was a new sensation there, was my brain interpreting it as dizziness, or was it sound? I had to keep closing my eyes, it was so uncomfortable. It didn't sound or feel like anything familiar.

Sharon tried to increase the volume in each channel independently. By the end, I had all 16 channels on. Each time I heard something, I got a dizzy sensation. I wasn't able to tell the difference in sound volume. The typical mapping approach wasn't working out well. As my loving husband joked, "This is Lisa, of course this would be difficult!" Sharon decided to change me over to the input from the microphone instead of playing tones. She said she sometimes does this with kids.

I then tried using my HA with the CI. It actually helped make the CI output more like sound. I plan to wear it in conjunction with the CI. It will act as a bootstrap, helping me understand sounds from the HA to the CI. As Sharon says, why not use all the tools at my disposal to help me hear the most? I've also heard from others that if I don't wear a HA at the beginning, it's a much tougher adjustment later on.

The first voice I heard was actually mine. Sharon asked me a question (I had my HA on) and when I responded, the extra oomph in my voice startled me.

Sharon kept the volume constant for a bit while showing me the different things that came with the CI -- the slim cell vs the power battery, battery charger, t-coil, etc. It was loud at first but became comfortable. At that point, Sharon increased it to a louder setting. She would ask how I was doing, and I'd tell her that I was still feeling the uncomfortable sensation but wanted to push through it. I felt like I wouldn't get anywhere otherwise.

Occasionally, I turned off my HA to see the difference. I only wish I could take the CI off easily to compare with the HA - like if I hear something and don't know if I would normally hear it with a HA. Unfortunately, turning the CI off means literally taking it off. Putting it back on is a whole ordeal. Whenever the CI was turned off -- whether accidentally or intentionally -- we had to drop the dial down to 9 o'clock and slowly ramp it up to 12 o'clock. Aaron was the one turning the dial but he had trouble doing so. Ocasionally the result was that he turned it up to 12:30 by accident. Whenever that happened, my head was filled with a roar that was so painful that tears came to my eyes as I immediately ripped the CI off. I have to start the volume low and slowly ramp it up. I've been talking to friends and apparently this isn't something that will get better for a while; starting at 12:00 is too much of a jolt for people months or even a year later. Great...

I asked Aaron tonight what it was like watching me today. He said he was totally in scientist mode, but when I grimaced in pain, he had to switch to personal mode. It was disconcerting for him, and of course not helped by the fact that he was the cause of my pain. Earlier in the session, I commented that I could tell the difference between his voice and Sharon's, since his is obviously lower. He was also closest to me, so it also felt louder.

At one point, Sharon elected to up the magnet strength in the coil because it was falling off too easily. Hopefully it'll stick; otherwise she'll fix it again at my appointment next Thursday. After the session, I fussed with my hair and it came right off. Clearly I'll have to adjust some of my habits but hopefully it's just a matter of figuring out the right positions and movements.

Samara was playing with two quarters, and when she dropped them, I heard it. I wouldn't have heard that with my HA. I was also able to hear when Aaron tapped his ring against the metal on a chair. Later in the session, Samara started making silly noises for me to hear. She also spun her coins and Sharon asked her to do it again to see if I could hear. She was really trying to help; I returned from a bathroom break to have her say, "Hi Mommy," as she did earlier in the session CI. "It's not in yet, honey," I had to say!

When Samara said something and I heard her is when my parents got emotional. I had told myself I wasn't going to cry - simply because I didn't think there would be a reason to. But seeing them cry got me teary - not really because of the sound itself - but their reaction to me hearing.

Sharon played around with the volume, slowly increasing it at intervals. I could tell each time she upped it, as I got a little jolt whenever someone talked. The loudest person? Me, because I'm the closest to the microphone. Whenever people talk, it sounds like it's amplified, with an echo in my head that's very unpleasant. We worked on the volume for a while until we couldn't increase it without me getting uncomfortable. Sharon finally programmed three different volume levels, each a bit louder than the next with the first being the highest I could tolerate. I wore the CI for another four hours after the session ended, until the discomfort caught up with me. I'm still feeling nauseated as a result. Sharon said I can take it off when I need a break. I should wear it every day, but can gradually increase the length of time.

The general consensus from us in the collective is that it's nearly impossible to describe what it's like. The best I can tell you right now is that it's absolutely nothing like my HA. It's also nothing like sound, really. It's just kind of a low rumbling in my head that gives off pulsating waves each time there's a sound. This is more noticeable without my HA. With my HA, the sensation is more like sound with a lot other stuff in my head. Supposedly, this will get better. One friend said in 24 hours, I'll be more used to it. Another friend said the first day or two or three were by far the worst.

The honest truth is right now, I really don't like the CI. I feel like a wimp for not being able to withstand the sound or hear more. I can only hope that David is right when he says we'll be laughing about this over a margarita come June!

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