Quixotic Deaf

Hurricane Gustav

August 31, 2008 · 2 Comments

I realize this is off topic, but in case folks were wondering…

My husband and I evacuated on Thursday night with our three dogs and a friend in tow. Things were uncertain that night, but I’m so glad we did. Traffic looks horrific, gas hard to come by and general panic cannot be good to get stuck in the middle of. We’re now hanging out in sunny central Texas, bouncing from house to house of our friends and family and staying transfixed to the news. Our two main concerns are flooding and looters. Nagin has threatened to throw looters in state prison, which doesn’t make me feel better. I don’t mind if people are going to need toilet paper and food, but please leave the TV.

I keep wondering what my life is going to be like after Tuesday.

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The Weeks Turn into Months

August 5, 2008 · 7 Comments

It’s been quite the interesting one month and so weeks since activation. Updates have been pretty few and far between. I will attribute this error to my trails and tribulations of having a cochlear implant. My 20-plus years of being profoundly deaf are making this process a slow one. However, none-the-less, things are progressing!

I have visited the audiologist every two weeks since activation. Our hour that we spend together consists of about 30 to 40 minutes of questions and discussion and only about 20 minutes going through the actual adjustments. At each appointment I am given only two types of tests. For the first one the audiologists gives me sets of beeps and goes through each main frequency level starting at the low frequencies and working up to the higher ones. He asks me to count the number of beeps in each set. When this is done, he gives me a chart with a bar. On the left side of the bar there’s a marker that says “first hearing” which means this is when I first hear something. The next marker to the right is “soft”, then “medium”, then “loud but comfortable” and finally “too loud”. Our goal is to find a volume I can listen to on each frequency for long intervals. There are really no marks as far as development goes. The experience is different for each patient. The audiologists go at a pace that is comfortable to the person using the device.

As far as my experience goes between the appointments: it was pretty awful at first. As I said before, I was given eight programs, each a little louder than the previous. I was asked to gradually turn up the volume – at my own pace. Each appointment was like this. This proved very stressful the first few weeks. I was faced with countless headaches and even nausea. I even was sick with a cold for a week (although I am sure this is not the fault of the implant – just one of those things that comes with being human). I would often leave the implant off for long periods of time. I felt guilty about this a lot – which is probably the real reason for my lack of posting. I knew I needed to wear it to get anywhere, hearing is not something that can just come to you. You have to work at it. Practice really does make (almost) perfect when it comes to hearing.

Then last week everything changed. Instead of my usual two weeks, I was given three weeks before my next appointment. I breezed through the programs in a week and a half, much to my amazement. With my volume maxed out, I think I finally had a chance to just focus on hearing rather than having to deal with the constant change and the headaches that went along with it. Then one day I decided I wanted to see how far I had come. I could hear little things and understand noises here and there. That however, isn’t what I want from my CI. I can get that easily from my hearing aid. I wanted to understand speech. So I turned off my hearing aid, leaving my CI on. I was in the car and decided that I would plug in a Grammy Nominees CD. These were songs I knew fairly well and before long, tears were coming to my eyes as I jammed along to (believe it or not) Britney Spears and Kid Rock. I could follow along in the songs! This was great. I have not heard a thing out of that ear for 23 years and I’m following along to music!!!??? It was really amazing. That was a real starting point to real hearing rather than just some gorram noise.

I think I am blessed to be able to use my hearing aid to the up most of my abilities and do well at it. It created “memory” for my left ear. Even though I had a rocky start, my brain knows how to interpret sound from a 23-year-dysfunctional ear that’s receiving some type of electronical stimulation that it has never received in its life. I am in awe how “plastic” our brains are, simply in awe.

After that moment in the car, I really began practicing. On the way to work, I started listening to talk radio with just my cochlear implant. I don’t pick up much, but I know I heard “The Dow Jones is up by (36?) points” and “south (of the lake)”. At a later date, I picked up “United States”, “frustrating” and “President Bush’s” – though not consecutively in that order. I also finally got my book in the mail, and am listening to the audiobook as I read. I just finished today and plan to try to listen to the audiobook again on a road trip for work on Wednesday. Since I know the topic and most of what was said, I bet I could pick up quite a bit.

Today’s visit to the audiologist was a bit different than the others. My audiologist programmed my CI to handle environmental sounds rather than it being a way of rehabilitating my brain. I was given four programs. The first was for everyday events, the second took advantage of the directional microphone which is programmed to focus on sound in front of me, the third was programmed to reduce background noise and the fourth was designed to listen to music. I didn’t understand the fourth one other than it’s supposed to pick up more sounds and heighten background noise since the CI can’t tell the difference between background noise and music. Oh joy. I think I’m avoiding that one.

One thing that was interesting that I learned today. There are frequencies that the cochlear implant can “hear” that no hearing aid can pick up on. They’re the higher frequencies after where the hearing aid will “drop off” in audiogram. Wow. I wonder what they sound like and how it makes sounds different.

This all is a pretty fast leap from when I felt “head throbs” as my first introduction to CI hearing. Things sound less like bells and more echoy overall now.

P.S. I love the violin solo in “Circle of Life” from Lion King. It is gorgeous!

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First Days

June 21, 2008 · 2 Comments

The first few days with a CI have been interesting. I feel that I have a better understanding of why people do not like to wear it and even stop wearing it after awhile. It can be the ultimate tinnitus/headache inducer and yet not be one (as soon as you take it off, it goes away – WEIRD). A cochlear implant is not something that is easy or an instant fix. It takes a lot of time and energy if you’ve been deaf a long time (I think it is probably easier for someone who just lost their hearing) I thought it would be a lot like switching from analog to digital hearing aids, but it’s a lot more difficult than that. My brain really doesn’t know what to do with all that loud ringing, but it’s making progress.

I haven’t felt well these last couple of days. My stomach feels nauseous a lot. It’s not a strong nauseous feeling – it’s pretty faint. I’m not sure if it’s because of my disorientation from the cochlear implant or if it’s from something else. Before my surgery, my doctor had informed me that I have a profound loss of balance in my semicircular canals. Basically, the surgery can’t make it worse than it already is. So it quite possibly could be something else like the medicine and if so, then it should go away soon. It may also be because I’ve been kind of pushing it with the volume. Maybe I’m just turning it up too fast. My logic at the beginning was to push my brain and maybe that’s not such a great idea. Today has been my “take it easy” day.

I think I’ve made pretty significant progress with it. Despite all the nausea and headaches (which was to be expected) there’s a lot of good things. The ringing in general has become more defined. I feel like having a hearing aid on has really helped a lot because it helps the CI side identify the sound and now things are becoming part of what I hear on my hearing aid side – only louder. It’s not perfectly defined yet, so I hear speech worse than with just my hearing aid. When my CI side has figured out what I am hearing, I hear what I usually do on my hearing aid side, only louder with a slight echo to it.

Right now speech sounds like bells, but I can identify each syllable and spaces between words when I am watching the person’s lips and reading captions (on TV). I can differentiate between speech and general environmental sounds with just my CI on. Everything sounds like bells, but the bells that speech makes is just slightly different than everything else. Every now and then, I pick out bell “patterns” and realize that I’m listening to something! Today I was in my office and the bells were making rhythmic patterns. It sounded like something electronical was going in a cycle/circle so I believe it may have been a computer fan. I lost the sound though before I could ask someone what it was.

Last night I was listening to talk radio and I could’ve sworn that for a short while my cochlear implant was picking up their talking when my hearing aid could not. It really fascinated me. I kept playing with the radio to see how soft I could make it and still hear it. But I think after a little bit, my brain made an adjustment to the CI (time to turn up the volume) and I couldn’t hear it any more.

I went to a bar last night too. It was so loud, but for some reason I think it may have been slightly easier to understand other people in the bar. Either that or my mind is playing tricks on me!

I told someone the other day. If there was a pill that could make me hearing, I wouldn’t take it (yes, this is after activation!) There are two reasons. One: oh my gosh, everything is so LOUD. And to think, there are still five more programs to get through in a week and a half! Each program is louder than the previous. Can you imagine how painful that can be to just turn someone on? It makes me shutter just thinking about it Two: I love being deaf. Everything is so much calmer. I really don’t understand why hearing people like listening to all that loud noise constantly. I love my breaks and my beauty sleep!

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I Got Bells

June 18, 2008 · 4 Comments

Yesterday was activation day! It started off with a series of tests that weren’t meant for me to hear. Followed by beeps. I was told to count the number of beeps. Except they didn’t sound anything like beeps – more like head throbs. I was counting the number of head throbs they were giving me! After awhile they started to sound more like sounds than throbs. Finally, came the interesting part – going live! All I could hear was bells… not the pretty ones that churches ring, but raspy, staticy bells.  At first the bells were constant. The room was small and there wasn’t much noise in there. The audiologist told me that they had a loud computer fan in the room and I was probably hearing that. That was pretty neat because even though it sounded awful, the cochlear implant WAS picking that up. This is something I wouldn’t be able to hear with my hearing aid. With speech, since my hearing aid is on, it sounds like an bellsy echo after each word.

I was turned off and sent home after an hour. Today we went back and learned how to use it. It was awful to put on because the stimulation was so overwhelming. Since then I had it on pretty much all day. After I took it off to rest for about 30 minutes and then put it back on, it was painful and took a long time to get used to again. I think taking it off and putting it back on again 15, 30 or more minutes later is worse than just wearing it, no matter how annoying the bells are.

Things I hear:

  • The clicking of the keys and wheel on my Blackberry.
  • The clicking of the keys on the keyboard.
  • Water is VERY loud. The worst is when I flush the toilet.
  • The bottle cap screwing on and off.
  • I think I’m starting to hear paper.

My audiologist told me to keep wearing my hearing aid. I think that helps with picking up these sounds.

I was given 8 programs – four on each external piece. The volume goes up 10 points including 0 so I have about 80 stages to go through in two weeks if I feel comfortable enough to do it. I’m up to volume 4 on program 2. I’m sure tomorrow morning, I will be turning it waaay down. Ow.

We took a video of it. Hopefully, we can clip that and caption it before putting it up. It’s kind of funny because when I first start hearing something, I literally jumped out of my chair each time.

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Little Things That Should Go Away

June 9, 2008 · 3 Comments

1. My taste buds are temporarily screwed up. Everything tastes ‘numb’. It still does taste kind of like it should, with that numb overlay.

2. My ear pokes out and I look like a half-elf.

3. Still a bit woozy. I don’t feel good standing up for long periods of time even though this is day three and a half.

Tomorrow, I’m back to work. I hope to make it through the day without having to bow out early. But if I have to, so be it.

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The Day After

June 7, 2008 · 1 Comment

Surgery went well and fine. No complications occurred. We got to the hospital and checked in. They soon directed us into a room where I was told to put on a hospital gown, complete with pants, socks and a hair net (although I’m not sure why they gave that to me, I’m sure it didn’t stay on long – they probably ended up using something else). My husband took some pre-surgery photos. And the nurses started coming in to ask me questions.

A nurse then proceeded to put an IV in my hand. It really scared me because the last time someone put an IV in my hand it felt like the needle was scratching against bone, it caused a lot of pain, but the nurse was nice and gave me local anesthetics before putting in the IV. We had a lot of fun with him talking about the old days of anthesia and talking about the scarf on his head – it had blood cells all over it, not real ones just pictures. After about a half an hour of waiting, I was taken to another room where they had me move onto another bed and they started adding monitors onto my body. I looked over and another nurse was adding something to my IV. I asked her if that was the stuff that knocked me out, and she said something like “oh yes” with a knowing look. That was the last thing I remembered.

The next thing I know, I was being woken up. My interpreter was in the room which was strange because she had not followed me into the other room earlier, well, it seemed like seconds ago. The nurse told me that I was “All Done!” I was literally shocked. I kept asking if it really was over. And they kept reassuring me. After I figured out my surroundings, I realized that my throat was dry and asked for water, they were only able to give me ice chips. I didn’t feel any pain at all then, but it did feel like an ear infection – to which the nurse hurried off to check with my doctor on that one. When they wheeled me into the recovery room, I was starting to feel some pain. My family came and my husband brought flowers and movies for me. I was given a pain killer by mouth, given my clothes back and was told I could go home. I felt pretty alert all day yesterday. I took several naps but I was surprised at how easy it was. No bandages, no nothing, just deep dissolveable stitches and glue.

Today was a little more painful. The blood has to drain somewhere so it has been draining down to my neck causing it to swell. I’ve also felt like I have a horrible cramp there too and can’t turn my neck. We talked to the doctor about this and he said it should go away today or tomorrow. The stiffness is getting better though – I can turn my head a little more than yesterday and this morning.

I am curious what it will feel like to touch it. I’m a little too scared to touch it yet. My husband lightly dragged his fingers over my head to see where the magnet is and showed me where he thinks it is.

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It’s Surgery Day!

June 5, 2008 · 2 Comments

It’s approximately 4 a.m. and surgery is in four hours. I have to be at the hospital at 6:15 though and we have a 45 minute to an hour drive in front of us. It’s hard to describe the feeling I have right now. It seems weird to me that I’m going to go to sleep and then wake up when it’s all over. Yesterday they talked about the anesthesia at my pre-op appointment. Basically, I will be given an IV. Then sometime after I pass out, a tube will be put into my mouth/throat for sleeping gases. In addition to just anesthesia, they will be given me amnesia medicine. This kind of makes me nervous, but in a way I am glad. I have heard stories about anesthesia not working and the person is awake but cannot move or tell the doctor. This way if I does happen, I won’t remember anything anyways. Kind of creepy though.

Midnight last night marks when I had to stop taking food, water and anything else by mouth.

Got to go. Hopefully it goes well.

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It’s Monday Night

June 3, 2008 · 2 Comments

I feel a little worried that my surgery is in less than three days. My mom and brother-in-law have both told me that surgeries are no big deal. In fact, I think for my brother-in-law anyways, they’re more like a badge of honor. Me… I’m just nervous about one. The nervousness isn’t that bad though, mostly I just try not to think about it and go about my merry way. It’ll be over and done with before long. Just like the surgery will be here in no time, the wound will be healed and pain gone in no time. I just have to get through it and try to take care of myself the best way I can.

I think the thing that worries me more than the surgery is disappointing people. I know I have “high hopes and low expectations” but I am worried that several people have high expectations resting on the temporal lobe of my brain. I can’t really tell who, ‘cuz I can’t hear all that well, but I just get that feeling. Maybe I’m just being paranoid. I try not to think about that too, and just do my best and whatever happens, happens and we’ll deal with it.

I have described this experience to several people this week about it being like a roller coaster. I love roller coasters. I hope this will have the same type of effect. These last ten months feels like I am making a slow ascent up the steepest part of the ride. The nervousness builds, and your mind is having conflicts with itself (should I do it? should I not do it?). The surgery is at the top and then down, down, down you go (mapping). Usually, you’re scared out of your mind, but somewhere down the descent, you realize that you actually like it and you want to do it again (well not the surgery part though).

I made some progress with self-therapy. I’ve connected my iTunes to download books from http://www.audible.com/. From there, I will probably purchase books off of the Internet or use books I already have for dual audio/reading exercises. I am trying to get books that are read by their authors so the voices won’t be so varied. I love Harry Potter and have given a try at listening to the books on tape with Jim Dale. I think Jim Dale is great and extremely talented. He holds the Guinness World Record for the most number of voices in an audio book – 146!!!! This was for “Harry Potter and the Deathly Hallows”. I also love him in “Pushing Daisies”. I think it’s better to start out with baby steps though (i.e. not Jim Dale) and choose someone who has a fairly consistent voice. FYI, he also has a British accent.

I have mentioned that I’m getting a CI to some of my deaf friends who do or don’t use their voice and may or may not use hearing aids. Amazingly enough, everyone has been really supportive. This wasn’t a deciding factor for me, but it does make me feel a little bit better. Plus, I know I have some great friends.

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Brown or Black?

May 28, 2008 · 5 Comments

I know that before I said I might be interested in trying out the pink or blue one, but I’ve seen them and they’re just too bright to me. If they could tone it down a bit, I would consider it.

I have to pick out two colors by tomorrow afternoon (noonish?). I’ve already decided on silver (which looks a little blueish) and either brown or black. Here are some photos:

Brown

Black

Let me know!

Eight days to go.

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Nine More Days (and some odd hours)!

May 27, 2008 · 1 Comment

I’m nervous, but not as much as I was. In fact, in some strange way, I am looking forward to it. I think it’s natural for humans to feel curious. I just hope I can get though it without any technical glitches and surgery mishaps, and focus on learning how to hear with this piece of technology.

Maybe I should say something, in honor of Abbie, like “9 days until I go Bionic!” :)

I am so happy I’m doing it in Texas. I have a huge support system over there and that just makes me look forward to it. This is not to say I don’t have one in New Orleans – it is still growing and is a year and a half old. In fact, I know that support system is routing for me as much as the one in Texas is annnndddd taking care of my two dogs.

Oh, here’s some other news. Today is my and my husband’s first wedding anniversary! He got me the best gift: horseback riding lessons and some beautiful cowboy boots. You have to know the story, to know just how special it is. When I was younger, I LOVED horses. I would read every horse-related book I could get my hands on. So I asked my parents for horseback riding lessons and started going. I loved it. I still even remember my horse’s name: Spud. Well about six weeks into it (or maybe less) the insurance company told me I was not allowed to go back because I was deaf. I was really depressed, but closed that chapter and went on to play soccer. I have been on horses a few times since, but they weren’t lessons or ongoing.

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