§ ¶First real mapping
I've come to the conclusion that for an adult, getting a CI is like childbirth: no one talks about the bad parts until after you've gone through it. I didn't realize that most people hate theirs at first, or that it takes a long time to get used to. It's thanks to the wonderful letters of support and encouragement I've gotten this past week that I've come to realize that my experience is - thankfully! - not unique.Herewith, the two bits of advice that people have imparted:
1) Adults tend to hate their CIs at first
2) Don't compare yourself to others
The past couple of days, I was able to increase the volume level a notch or so. Last night when I was in the kitchen, I heard Aaron laugh in his office (both rooms are separated by a hallway). What was amazing was I not only heard the sound, but knew what it was. This morning, I was on my computer when I heard some noise. I immediately looked at the monitor thinking it was Doran waking up from his nap, but it was silent. Then I realized - it was the TV in the living room; I had turned it on earlier for Samara. I've had trouble hearing the doorbell in our house - sometimes I hear it, sometimes I don't. Today, I had no problem hearing it when the plumber came a calling.
I was a little nervous for my appointment today, but also fortified with what I'd learned this week. In the 2.5 hour appointment (that I thought would only be an hour), it soon became apparent that I'd made a lot of progress.
Soon after Sharon and I started, Dr. Hirsch paid a visit. I'd emailed Sharon earlier this week about some pain/pressure in my implanted ear, thus worrying the both of them. Dr. Hirsch took a look at everything, inside and out, and said it looked very good. I asked about a tender spot on the outside. He said it can take three months for everything to really heal. There's no more blood behind my eardrum; I guess it was eliminated without the drama of a horror film. Sharon theorized that the pain/pressure I've been experiencing is from the electrode stimulation. Dr. Hirsch also said what Sharon had last week: being prelingual (my deafness occurred before the development of speech and language; I was born deaf) likely plays into this and means I have a steeper learning curve.
One of the first things Sharon did was to adjust the volume control. Now I should be able to wear the CI at 12 all the time and hopefully not have as much of a jolt when turning it on or increasing volume. We were able to get a real mapping done. In other words, Sharon controlled which electrodes were on and I helped her find my comfort levels for each arrangement. This is part of a mapping, which can have a seemingly infinite number of permutations. I'll be having a lot of mappings over the next several months, and eventually may only need one once a year.
During this process, I was able to tell the difference between the low and high frequencies. Because of my deafness, it is very hard for me to hear high frequency sounds. I liked hearing the lower ones better at first, because the high ones were almost uncomfortable to hear, I wasn't used to them. I helped Sharon balance out all of the channels so that despite the different pitches, they were all about the same volume. She said my ability to do both of these things was good.
We did some closed-set exercises to determine how much I was getting from the CI in terms of speech. I had a piece of paper in front of me with a list of words: one syllable words in the first column, and multi-syllable words in the second column. For each row, Sharon covered her mouth and I had to tell her which (word) column she had said. I think I got 13/15 on that one. The sound was the same no matter the word; it was BOOM versus BOOM BOOM. Another exercise involved telling her if the two words she said were the same or different. I think I got a perfect score. I can't discriminate speech yet (it's too early for that), but could obviously tell syllables.
We also played around with the volume levels, trying to set the three programs (P1, P2, and P3) to keep me busy for this next week. I went in the sound booth and got a hearing test while on P1 (I think??) and the results were similar to my HA. She said it was a very conservative program. P2 was 16 levels higher, so I told her to increase P1 a bit. She brought it 8 levels closer. P3 is a lot louder, and not comfortable enough for me yet, but the hearing test with P3 was more successful. I have P1 so that if P2 or P3 become too overwhelming, at least I'll have a "safe" level rather than having to take the CI off.
When we compared the new program numbers to the ones I had this past week, Sharon realized that the volume was way too high last week (and apologized). No wonder it was so uncomfortable! So with that and the fine tune, I'm feeling better about things.
I asked if there were any exercises I could do, so she gave me some home assignments. Short of the occasional refresher, this will be the start to my first speech/hearing rehabilitation in 8 years. I'll start with a therapist in a month, but I want to get started in the meantime. I won't fully benefit from the CI unless I work at it. Intensive speech/hearing therapy is nothing new to me, but now it's a whole new ball game!
§ ¶Two days post-activation
I wish I could report that I've made lots of progress since Thursday, but if anything, I feel like I've regressed. I haven't been able to get back to 12:00. Yesterday I had it at 10 (I think!) for most of the day, and today I was at 10:30. Even those levels are hard for me to take. Each time I try to turn the volume, it's frustrating because I can't tell where it is and am afraid of turning it too much. Each tiny increase feels like a huge jump. I found out that even years later, people are unable to start at 12. I think a great design feature would be the ability to set a program that gradually increases volume in a certain period of time.I've been slightly reassured by being told that other adults hated their CI at first too. I'm just worried that at the rate I'm going (or not going, rather!) that by my next appointment on Thursday, I won't be ready for any changes that should be made.
A few things I forgot to mention about activation: Sharon said the /s/ and /sh/ sounds to see if I could hear them, and then read some words off a list in front of me. I could hear everything except the /s/. I really should be hearing the /s/ at this point, so the goal is to get me to a level where I can - but see above! Also, when I commented that when I talk, it's too loud, Aaron's response was, "That's not a problem, that's a feature!" Yeah, yeah.
§ ¶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!
§ ¶Waiting for activation...
I got through my first full week without help - and I survived! The intermittent pain is getting less frequent. My ear still feels like it has a lot of pressure. In general, though, everything is improving and I'm feeling more normal minus the exhaustion. The worst thing right now is that I still get sharp jaw pain when I yawn.I've noticed that wearing only one hearing aid definitely puts me at a disadvantage. Aaron's had more trouble getting my attention, and lipreading is a touch more difficult. When in the car or in noisy situations, I can barely hear myself, so that has been frustrating.
When I think about activation, I wonder how I'll react. Some people get emotional upon "hearing for the first time." I've been wearing hearing aids since my diagnosis at 14 months of age, so I don't feel like that'll be the case for me. I can already hear people's voices, the phone, and a lot of other sounds that some people can't. Aaron said when he puts my hearing aid to his ear, it sounds distorted and not like real speech. It probably sounded like that when I first started wearing it. Since I hadn't heard sound prior to that and was so young, I wouldn't have known. Having worn them for so long, my brain has adjusted and it sounds perfectly normal to me - no distortion. But when I get my CI, it'll be a different kind of sound. My brain will need to adjust all over again. I'm trying to prepare myself for the fact that the first few weeks will likely be maddening. Will I be able to take the CI off if it gets to be too much? I don't know if they recommend leaving it on no matter what, or if I'm allowed a break now and then...
I've been asking my friends about their activation experiences to try to prepare. David, who has never dropped acid, compares it to, well, an acid trip; he says it will be TRIPPY how C R I S P and CLEARLY I'll hear things. He also said things would be "Jesuscan'tyouputdownyourcoffeemugalittlemoregently" loud and warned me not to be surprised if I get bitchy at times - so, family and friends - watch out! Chris -- who loved wearing brightly colored hearing aids and probably didn't pick a boring brown processor like me -- reminded me that the first few days, I'll be hearing "white noise" all the time, but this will eventually subside. He had a really good suggestion: go to a place the first night of activation day, and really listen to its ambient noise, and then come back in a month, three months, and a year later, and write down my impressions.
