Goldilocks Purgatory

Most of you know I took a leave of absence from work to focus on auditory rehabilitation. I wish I could report phenomenal progress, but it remains slow. Still, it is progress!

I really did enjoy a day of music on Sunday. I drove up to my parents and listened to my iPod playlist the whole way. My good auditory vibes lasted until about 1/3 of the way through the Grammys when my brain shut down. Since then, I haven't wanted to wear my CI as it has gone back to feeling like physical pain. I think I really overdid it on Sunday, just like my body gets sore from a CrossFit workout following weeks of inactivity, my brain was sore from the auditory workout!

When I first took leave, I started off listening to an audiobook, while reading along. I still cannot distinguish words without a text in front of me or lip-reading. It often just sounds like nonsense, babble, even beeps. I haven't done as much of that because a professional I am working with said that is a secondary sound source and would be much more difficult. However, she also said to "bathe in sound" so I may go back to it.

I had another mapping with my audiologist. It felt like it went miserably, like I was trapped in some kind of demented Goldilocks world - but in this one, nothing was "just right," not the porridge, not the chair, not the bed, and certainly not the darned CI processor. Every setting felt either too loud or too soft. I think we were both frustrated and it even reached a point where I felt like what I was hearing and what the computer was telling my audiologist I should be hearing were two different things. She had me on the softest setting and it sounded like the loudest setting to me, but I think it was my brain playing tricks on me. When I got out into the real world, it was better.

The best news from the new mapping was that sound wasn't painful anymore. Yesterday and today were the first days sound felt painful again since my new mapping and I think it was because I was fatigued.

When I say painful, I generally mean when I put it on or have it on and sound hits my brain, it feels like an electrical shock. If you are not a Buffy the Vampire Slayer fan, you won't get this, but I told my sister that I felt like Spike with a chip in my brain that caused physical pain at certain triggers, his being violence against humans, mine being sound waves. I felt like clutching my head and going "AARGGGGGHHHH."

Actually, I think I have done that a few times in the last two months.

That was happening ALL of the time before I decided to take leave. Work was miserable because of it. I couldn't put anything into the background and all these sounds were just assaulting me and hurting me and I felt like I was coming apart. I kept getting sick, I felt depressed, everything felt hopeless and I really wanted to just give up.

Since the new mapping and the CI volume has been adjusted to softer levels, this doesn't usually happen anymore. Keep in mind, that I am still far below normal hearing levels. I don't know how you people stand it!! :P

I also met with a teacher of the deaf named Sabrina who is now working with me regularly. She gave me a spreadsheet of auditory milestones at our first meeting just to lay the groundwork, and I remember looking over the list, which has milestones for babies and toddlers, and thinking, "Pfffft, it's not like I am that bad off!"

Then (drumroll) - reality check!

The first meeting with Sabrina was before the next mapping with the audiologist and when I had the next mapping, the audiologist did a sound test on me which I later learned was the Ling 6 sound check. It is 6 sounds - "Ahh," "Eee," "Ooo," "Mmm," Sss," and "Shh." The sounds are articulated and the deaf person is supposed to repeat which sound was said.

I couldn't distinguish one single sound from the others and it was a shock. I felt like I had been slapped and it made me realize, "Wow, my hearing right now really is just like a baby's."

Maybe that can help people understand what I am going through in this process. It helped ME understand what I am going through, at least after I got over the shock of having baby brain!

The audiologist also tried some colors with me but they all sounded like "blue."

Since then I have worked on the Ling 6 sounds and colors and other closed sets of words with my sister, her kids and my mom. When I went for my first official session with Sabrina, I did a little better with the Ling 6 and we discovered that I do have some advantages over a newborn in that I can detect syllables, duration and even some intensity in sounds. I just have trouble distinguishing what the sound is.

My mom has been working with me a few times a day. I'm making progress with the Ling 6. I can almost always differentiate the "Ahh" sound now, and I can usually even tell "Sss" from "Shh." Oddly enough, "Eee," "Ooo," and "Mmm" sound almost identical to me. What's really weird is that if I am looking at the person and can see the mouth movement, my brain seems to separate them into distinct sounds, but if I am not looking, it can't just yet.

We've also added family names because recognition of my name is another activity Sabrina wants me to work on. The names I recognize the best are Natalie and Jennifer.

I have trouble with my own name, Kelly and Kay. Is it something with those K sounds??

With colors, I have trouble with "red," but last night I got them all! My mom was so excited! I think she was more excited than me.

I had a little bit of a breakdown today because I just didn't expect sound to feel painful again after stringing so many good days together. I cried and my mom held me and told me to stop being so hard on myself and to give it time. I may be almost 43, but there is still nothing like being held by my mom.

So that has been my fascinating life with a new CI. It's hard to believe it has only been about 9 weeks since I was "turned on," Well, actually, I was turned on Sunday watching LL Kool J at the Grammys, but I digress... It seriously feels like months and months and that is part of my frustration, I think. Maybe because I have been "trying to hear," for almost 39 years of my life and I really, really want it to happen. Now.

Oh, and a shout-out to my Aunt Joanne. Love you and Uncle Sandy!

Peace.

Phantom noises

Monday started off so exciting. I was eager to see what I could hear and couldn't wait to put on my CI.

As I sat in my car Monday morning, waiting for the engine to warm up a bit, I thought I heard birds. There was this staccato of sound that I couldn't relate to anything in my environment until I noticed birds flying around.

Don’t get too excited. I have heard birds before. But usually only when I’m outside, everything else is completely quiet and the birds are very close by. I don’t know that I have ever heard birds while sitting in my car with the door shut and the engine running.

Then I decided to try music again and I played Southern Cross, the Jimmy Buffett version. Right at the beginning there is this series of notes that I don't think I have ever noticed before. I can't tell what they are or what instrument makes them, but I was enchanted. Most of the drive to work, I found myself rewinding Southern Cross just to listen to the beginning over and over again. I actually felt a tickle in my head when I heard them. A pleasant tickle. Oh dear, no sex jokes here, please. Please, no. ACK, I'm making one in my head even as I type! GAHHHH!!!!

Moving on ... At work, as with over the weekend at home, I needed to really focus on the sources of sounds to figure out what they were. My filters still were not working well at all and most sounds just blended together into a loud din. The noise in the hallways between classes was pretty overwhelming.

Then by 2 p.m., my brain was d-u-n. Done. Finished. Over it. Caput. It didn't want to process anything else. Everything deteriorated into a roar of robotic noise, but I determinedly kept on my processor, even after work at the gym and at Target. By the time I got to Target, sound was starting to feel physically painful again. I found myself wincing often at the various noises hitting me.

Monday night while trying to fall asleep, I was visited by "phantom noises." You know how it is said that people who have lost a limb continue to think they feel pain there? I just kept hearing sounds that I knew were not there. My processor was off, I was almost completely deaf, but I kept hearing noises. It started off as a rapid, ceaseless ticktickticktickticktick, like an evil, berserk clock. Then I started hearing bells, beeps and whistles, and then the evil clock noise came back. Tickticktickticktickticktick.... I was up until 3 a.m. with the freaking evil clock ticking in my head!!

Unfortunately nothing has changed over these last two days. The ticking has gone away, yes, but all I am hearing is robotic voices, beeps and whistles. Loudly. Constantly. I thought I was going to lose my mind today at work.

My CI is off right now. If it wasn't for the hope that all of this noise is going to coalesce into recognizable sounds and voices, I don't think I would ever want to put it on again. I don't know how long it is going to take for me and when I feel like giving up, I remind myself it has only been 5 days. 120 hours, 1/2 that really when you factor in sleep and other times I have had it off. So let's say 60 hours of CI usage versus 38 years of deafness. I need to give myself time and I need to be kind to myself while I'm going through this. I'm not very kind to myself, in case you haven't picked up on that and that just makes everything harder.

New Attitude

Today when I woke up, I was excited to put on the processor and see what things sounded like. What a difference a day can make, huh? Not that things sound very different today, but what a different attitude I have!

Unfortunately, I put my processor on only to have the batteries die about 5 minutes later. These are special batteries. I can't just run out to CVS and buy more. The CI came with 3 packs of rechargable batteries, but the batteries in the processor were supposed to last 3 days and I .... uh .... hadn't gotten around to charging the rechargeables. What??? I thought I had another day! I can see my sister shaking her head now and thinking, "Carolyn, you goof!" Mercifully, it only took about 3 hours for the battery packs to charge.

New observations - I didn't know light switches could be so loud! Or footsteps.

And I finally heard running water today. My brother turned on the faucet in the audiologist's office on Friday to test me, but I couldn't hear it. Couldn't hear it yesterday either, but I did today.

My breathing still sounds very loud and the clacking of the keys bugs me. I have a headache and I have some nausea, both of which are apparently common side effects as one adjusts to a new CI.

Work is gonna be interesting...

Pulses

Wow.

Nothing, nothing could have prepared me for this.

I cannot even figure out how to describe the experience to people who have working ears in a way that there are going to get it. I don't think it is possible.

So let me just start by saying this is difficult. This may be one of the top 5 difficult things I have ever done, right up there with getting sober and leaving my husband. What I am getting right now doesn't sound like sound as I know it, the familiar comfortable sound I get from my hearing aid.

There is nothing I want to do more than yank this lime green contraption off my head and flush it down the toilet. It's uncomfortable. Painful even. But I know that if I quit, it is never going to sound better than this. So it is staying attached to my head and I'm determined to make it work.

So I'll just share what yesterday was like.

The first thing the audiologist had to do was check the electrodes. I have 12 electrodes threaded into my cochlea. They all work. She said sometimes one goes bad during the insertion. You have to picture how tiny they are, and how small the thread they are attached to is. Have you ever snapped off a piece of loose elastic from the band of your underpants? Think of how thin that piece of elastic is. That's about the size of the electrode array that is inserted into the cochlea. The electrodes themselves are maybe the size of the head of a pin. So it is easy to understand how one might go askew during insertion. Luckily for me, none did.

Then the audiologist had to "map" each electrode individually. Mapping involves emitting a beep or pulse onto that electrode and I have to indicate the point at which the "volume" is as high as it can get before it reaches a painful level. It was kind of like being back in the sound booth and having to listen for the beeps. At first I thought my heart was beating really loud and fast before it registered to me that I was hearing the beeps and pulses of the electrode mapping. I continued to think I was feeling it in my heart throughout the course of the electrode mapping, although the audiologist thought that was mostly nerves. Feeling it in my heart sounds so beautiful and uplifting, but truthfully, it didn't feel very good. It was very unsettling, like I was having arrhythmia issues!

After she had mapped all 12 electrodes, she played a string of sound along the course of the electrode array that reminded me a little bit of when someone plays scales on a piano. When she did that, I started to cry. It really hit me then that for the first time in 38 years, I was hearing with my left ear and it sounded beautiful.

After that was done, the device was "turned on." At this point, my sister and brother got to be the first voices I heard. They didn't sound at all like I was expecting them to sound. They didn't sound anything like how I heard them to sound with my hearing aid and they didn't sound anything like that beautiful string of sound the audiologist had played along the electrode array. It was hard to find their voices in the pulsations of sound that were reaching me. They sounded very computerized and robotic and their "real voices" seemed to be buried at the bottom of what was reaching my brain and I couldn't get them unburied. I could understand what they were saying with lip reading and I could match up some pulses of sound with words, but I had to concentrate very hard and it made my head hurt.

I am so, SO grateful they were with me, though, and that their voices were the first I heard. Much love to you, Kelly and Jeff!

Then the audiologist did a word test on me. She covered her mouth and said the days of the week, but not in order. The only one I could get was "Tuesday." Then she did the same thing with colors. I was able to get "blue" and "purple." I was very excited to get purple. Kelly told me today also that it was really amazing for her to see me get purple.

Then the audiologist did have to do the sound booth beep test on me and she said my results were good for the first time after having it turned on. Then we talked about care and treatment of the processor and its components. I have a remote control! I got a lot of stuff to take home with me. I also need to be very careful that my processor doesn't end up in the bottom of a fishtank the way my hearing aid did...

My ear doctor wanted to see me. Kelly and Jeff had left by then. I sat in the chair in the doctor's office, turning the pages of a magazine and it sounded very loud to me. Each page I turned made this distinctive "FWIP!" sound. I found myself turning the pages back and forth because I was so fascinated with the FWIP FWIP FWIP I was hearing.

After all that, it was late and I had a soiree to attend at a friend's house, but I had to wear my hearing aid for it. I couldn't follow anything without it. I left my processor on also and I had to fight some dizziness. I've been on every antidepressant under the sun trying to find one that works for me and the sensation I get when I am coming off an antidepressant is one of sporadic waves of dizziness assailing my head. It felt like that. It still feels a bit like that. I think it was just the sound pulses.

On my drive home, I tried to listen to Christmas music and pick out what song was playing, but the only one I could recognize on my own was Jingle Bells. Everything else started to sound like ... wait for it ... you will never in a million years guess what the Christmas carols sounded like to me ... The Stray Cat Strut. Yes. That 80's song by the Stray Cats. Could I make this up?? I kept hearing, "... with my tail in the air ..." At the risk of sounding blasphemous, I don't think the "round yon virgin" had her "tail in the air." Oh God, I'm going to Hell, aren't I?

Finally I just turned off the music and talked to myself. I said street names as I passed them by. I pronounced the names of restaurants like "Taco Bell" as I drove past. I recited license plates "GTJ 3827, WCX 1823, VCK 4590" just trying to associate what I was hearing with what I was saying. I even saw a Dallas Cowboy star sticker on an SUV and said, "Dallas Cowboys," and right after that "Suck ass" came right out of my mouth, but that was completely spontaneous and unintentional. :)

When I got home, I watched some Friends episodes with the processor on and I kept hearing this pulsation of sharp noises even when no one was talking and it took me awhile to realize I was hearing the laugh track.

Today I am finding myself very distracted by my breathing. It sounds like a loud "uuhh WHOO," especially when I take a deep breath.

My sister told me today that the audiologist told her and Jeff that I would hate the way everything sounded at first and to make sure I kept it on. My sneaky siblings kept that from me yesterday.

And the keys on the laptop sound very loud!!

So that is where I am now.

MTC.