ToEs, ToAs, and GoAs!

One day after dubbing my cochlear implant a ToE - Thing of Evil - I feel much more benevolent towards it, courtesy of a visit with a new audiologist. (Thank you, thank you, thank you, Kate, for asking me to please get in touch with him and get a second opinion!)

One of the first things Audiologist 2.0, henceforth known as A2, no wait, that is not impressive enough. He is a God of Audiology... Audiology God. GoA? AG? No, not AG, that makes me think of Attorney General, which makes me think of Ken Cuccinelli, which makes my stomach spasm. I like GoA, we'll go with GoA. So, GoA told me almost immediately to put in my hearing aid again! He was a little surprised to hear that the other audiologist told me otherwise. He said, "This is not a race. If it benefits you, use it. This is hard enough without making it more difficult than it needs to be." He told me my brain would eventually adapt to the CI and while it may take longer if I am wearing the hearing aid also, it would also happen more naturally. Or more "organically" as a friend of mine likes to say because it sounds more intellectual and impressive (you know who you are).

GoA said that people with bilateral implants tend to do best, then people with 1 implant and 1 hearing aid, and then people with the CI only. My hearing aid does not need to be my enemy!

I almost swooned on the spot upon hearing that. My hearing aid! Green light! Go! I couldn't wait to put on my hearing aid again!

GoA took a lot of time to explain to me what is happening in my brain. I really liked one way he put it - my brain is building a new library of sound. The Other Audiologist ... ToA ha! ... didn't really go over a lot of information with me. I felt like I was pitched into the deep end of the pool without any swimming lessons. Now I still kind of feel like I am in the deep end of the pool and can't swim ... but at least I can tread water and not drown until I learn the freestyle or the backstroke.

GoA also explained that part of the difficulty is that with the CI, my brain is putting familiar sounds in the background and focusing on unfamiliar sounds and that is why noise seems to be all I am hearing.

GoA also said that while being such a good speech reader as I am is advantageous in many ways, that it's probably making it tougher for me in adjusting to the CI because I rely so much on visual cues. He said that people who are good speech readers tend to take longer to adapt to CIs than people who are not. He wants me to try things like watching television without the caption.

He also said that the typical person needs about 3 months before they even start to feel they are adapting. It hasn't even been 3 months for me.

Why the heck was I feeling so rushed and pressured and stressed and like a big, fat failure???

GoA also did another mapping and turned down some of the higher frequencies. He says the goal is to have them at the same volume as lower frequencies, but that can take longer and that is okay.

I feel SO much better.

Tragically, I could not put on my hearing aid as soon as I got home because as some of you may remember, my sister hid it by my request.

A few hours later I happened to glance at a wooden heart container on the bar in the kitchen and I immediately thought, "I bet Kelly put it in there." I know my sister and she would not want to put it too far out of reach just in case I really needed it. She didn't even want to take it from me in the first place!

I lifted the lid and there it was, nestled among other odds and ends.

Putting on my hearing aid was like sinking down into a warm bubble bath. Throwing on flannel pajamas straight from the dryer when it is snowing outside. Relaxing into a massage chair while having a pedicure. So comforting. I missed it and it felt good to have some familiar sound come back without feeling like I was jeopardizing the future success of the implant.

And as for tacking the television without closed caption ... I feel a Buffy Marathon coming on!

Music To My Ears

On my music day -

Winner of the day (because everything that person sang sounded good) - Lenny Kravitz - Stand By My Woman, Let Love Rule and It Ain't Over 'Til It's Over. Yay Lenny!

Song that was most disappointingly hard for me to hear and recognize because I like to loudly sing along to it when I am driving to the mountains - Take Me Home, Country Roads by John Denver

Songs that were surprisingly hard for me to hear and recognize because I thought their sweet, simple melodies would be easier - Sweet Potato Pie by Ray Charles and Just the Way You Are by Billy Joel

Songs that I rather expected to sound like noise, but sounded surprisingly good - You Shook Me All Night Long by AC/DC, Give It Away by the Red Hot Chili Peppers, and Zombie by the Cranberries.

Song that I must concede to my mother probably is about sex (I swore it wasn't when I was in middle school) - Union of the Snake by Duran Duran.

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.