Poison, or Not

One of the presenters at the HLAA convention was Michael Harvey, whose books were so very encouraging to me as my hearing loss progressed from manageable to severe. His workshop was excellent. A point he made really validates how I have been processing things over the past year and a half. When dealing with grief, loss, anger, fear, you have got to talk about it. "Silence is poison." If you don't talk about it, it will fester and grow; talking about it makes it lose its sting, and it begins to become less overwhelming, and you begin to heal.

So this is a gift we give to each other. There is great value in speaking the pain, and in hearing someone else's pain. Acknowledge it, validate it; then we can move on. And recognize as well that it will return, in decreasing waves. It's not a once for all kind of thing. So thank you to my friends, for your loving listening.

Reality Check

One of the things I need to remember as I adjust to this new reality (yes, even after 3 years with one and one year with two CI's, it's still "new") is what I'm comparing. My last post was about the loss of my orchestral experience. Yes, I have lost that. But it's not the least bit the fault of my cochlear implants. I lost orchestra music because I lost my hearing.

So I'm comparing my experience of music now to when I was a hearing person. It's a valid comparison, but not the only one. The other very important comparison is between what I hear with my cochlear implants and what I would hear *without* them. Which is nothing. Or at best a lot of very loud indistinct buzz if I were to continue wearing hearing aids.

I am now a deaf person. I had the choice between rapidly decreasing benefit from hearing aids, and getting a cochlear implant. Getting back the hearing I had the first 60% of my life was not, and is not, one of the options.

I was sitting in the prayer meeting at my church this evening, and I heard someone slip into the pew behind me. It was just a minute swish of her skirt against the fabric on the seat. Softer than a whisper. And I, with my electronic ears, heard it!

Not much short of a miracle. A good reminder of what I DO have rather than what I don't have.

Orchestra Music

I went to the Hearing Loss Association of America convention over the weekend, and of all the people for me to run into "randomly"-- I was leaving a noisy banquet after all the speeches were done and they cranked up the music for dancing. As I walked through the door, I turned to the person next to me and said, "It's loud in there!" He said, "Yes, and I use my ears for a living, so I can't afford all that sound." "What do you do?" "I'm a conductor." It stopped me dead in my tracks, almost knocked the wind out of me. I stood staring at him and finally softly said, "Then... you understand. I used to be in an orchestra.... and now... it's gone." We talked for a few minutes then went our separate ways. I found a quiet place and sat and cried.

That encounter has brought up a fresh wave of painful grieving, thinking about the joy of watching the conductor, the joys of not just playing notes, but *making music.* Crescendo and decrescendo; accelerando and ritardando. Painting pictures with my fingers and bow. The rise and swell of emotion and mood, created in a group. Being in the center of the musical sound. It's gone. So do I sit here and do the hard work of grieving, or do I eat a piece of chocolate cake, with lots of rich gloppy frosting? I have to say, the cake looks a lot more attractive. I'm tired of this grieving business.

I have so many blessings with my cochlear implants, but that part of my life, playing the viola, will never return. Sometimes one just has to grieve.

Musical Auditory Therapy, Session 2

This time, Amanda and I met at the church. We decided not to sit at the piano, just sat in the sanctuary. That is certainly a very different acoustical space than the living room at my house. We can't really tell how that affected things, as there are other factors such as doing practice between times we met.

She observed my pitch matching was better. I can't really tell, which is why I have her helping me in the first place. So it's good to have feedback that I'm improving. Lower pitches continue to be easier for me to match. She sings a pitch, on a chosen vowel (ooo, eeee, ahhh, ohhh) then I try to match it. This works best when she keeps singing the note while I fish around to find it. She indicates if I'm high or low and when I match. I can pretty much only tell if she's gone higher or lower than the last pitch. But I can tell if a pitch is very low, or very high, so I guess I'm getting more familiar with range again.

We worked on intervals this time. Greater intervals, like a fourth or fifth, are harder. We worked quite a bit with matching a whole step interval. She sang the interval alone, then I matched each pitch, then I sang the interval alone. It's a lot of work! Then we tried a half-step, and that was more challenging. Higher intervals are harder than lower intervals, but that makes sense.

We ended with singing "Jesus Loves Me" and "Twinkle, Twinkle Little Star" again, and she said I'm doing better on them. Still lots of work to do, of course. But I had a very unquantifiable improvement in my enjoyment of singing in church the Sunday after our first session--perhaps just because I know I'm working on it, and because I'm told I don't sound nearly as bad as I thought I was sounding.

Singing versus Speaking

Another thing Amanda and I figured out in the first session is that I have not really been using my singing voice much recently. It felt really different to match her pitch as she got higher and I had to really "sing" versus kind of speaking/singing. I was in choir enough years to know the difference and recognize how different it felt when I sang properly. So the next day I walked my dog down a bike path in the woods and sang and sang and sang to work up my singing muscles again! It was lovely.

Musical Auditory Therapy

I asked a friend, Amanda, one of the musicians at my church, if she'd be willing to do some musical auditory therapy with me to help me regain some of my sorely missed music. Neither of us quite knows what we are doing, so we are exploring it together. We recorded part of our first session. We started out with me trying to match a single pitch at a time. She sang a note, and I tried to copy it. She gave me hand signals to tell me to go up or down, and when I was matching it. One cool thing was I came to recognize a sense of resonance in my head when the pitches matched! This is going to be a fascinating process, to say the least. Then I sang Jesus Loves Me; then we sang it together so I could match her pitch as we went. I can't really quite tell when I'm on pitch yet. I'm closer sooner on the first few notes above middle C; after about G it gets pretty fuzzy.

Another friend told me today that Amanda said she saw (heard) amazing progress just in one hour. WooHoo!! I'm not sure how often we will meet, but I will keep you all posted, for sure...

Discriminating Orchestral Instruments with new CI

I have 12 years of classical music training; I spent 6 years in orchestras in HS and college. So...what can I hear now, with 2 CI's? I went on to an orchestra listening site (http://www.thirteen.org/publicarts/orchestra/) to test what I could hear--what I could discriminate (just for fun).

The site gives you pictures of 4-5 instruments, and a sound clip about 2-3 seconds long. You click on the instrument you hear. WELL, I got 11 out of 14 correct--with just my new ear!!! Three weeks post activation!!! WOOHOO!!!!!

I'm a happy camper. :D :D

Quote Of The Day

I frequently tell people to wait to tell me something, since "I can't listen and drive at the same time." So this tagline on a CI forum made me laugh out loud:

---- Friends Don't Let Friends Lip Read And Drive ----
.

Exercises For Dizziness

One more thing from my appointment with the audiologist today. I told her I am still having a hard time with my balance and being dizzy when I move my head around. She showed me some exercises to do. It's better to make the brain practice making the compensations. But it's also important to be well anchored so I don't fall over while doing the exercises. She warned me that I would feel more dizzy for a while before I feel less. That's good to know.

I am to sit where I feel securely balanced and will feel safe when unbalanced, like in an armchair hanging on to the arms, with my feet firmly planted on the floor. Then I turn my head quick to the left, back to center; to the right, back to center. Woo--glad I'm securely planted in my chair! Then I look up, back to center; look down, back to center. More woozy reaction. But this is what I do to improve. Then I can advance to doing the side to side with just my eyes, to give my brain practice adjusting my gaze back and forth. Even that makes me dizzy, too! But that's the point of the exercises. Hopefully I will feel progress soon.

The even more advanced step is doing all of the above while standing--with my hands securely anchored on a counter or the couch or whatever. I'm not there yet. But it's good to know that practice will help rather than just make me feel crummy. I wasn't sure. I'm glad to know what to do to help myself feel better.

Second Bilateral Mapping

I went to see the audiologist again today. I had a few things on a list for her:
- to make sure she knew about my blog here
- to give her the bottle of dark blue nail polish I bought to mark my new processor (she told me that traditionally, the right ear is coded red. So if I marked my new processor, for the right ear, with blue nail polish, I'd be messing with audiologists' brains. So I chose to mark my OLD processor, for my left ear, with the blue nail polish. And I won't be marking much else with it, so I gave it to her. I figured she'd get more use out of it!)
- to ask when I can color my hair again. She said four weeks after surgery. (My grey roots are going to be really wicked by then...)

Then we got down to business. I have gone from the initial program 1 up to program 2, which just had a bit more volume. That is good; it means my brain is adjusting to the stimulation and needing more.

The goal for the first mapping was just to get things going, get the brain stimulated by the electrode array, and give it a chance to get used to that. With this second mapping, we moved on to balancing the sound. We started with the lowest frequency electrode. Is it a comfortable volume? Compare it to the next electrode. Is the volume the same? And so on, through all 16 electrodes. The lower ones sounded pretty much the same volume, but when we got into the higher frequencies, I started needing more. That's where my nerve hasn't been stimulated much in the past few years. Intriguing how the brain gets itself back into old abilities!

Another cool thing was that, at the lower frequencies, I could tell some difference in pitch, or at least in tone. So that means I'm slowly moving past monotone. This is good.

After we went through all the electrodes, she switched the processor back on with all the electrodes. "How does this sound now?" "You sound more like yourself." She smiled broadly. "I was hoping you'd say something like that!"

She fiddled with some more things and had me compare program one and program two, like at the optometrist: which one is clearer? We went through several choices. I'm not sure what she was adjusting. She told me I didn't have to be able to say why one was better than the other, just whether it seemed clearer. That helped--I tend to be so analytical, I want to describe how it's different. So I could relax and just try to sense which was better and let go of why.

She told me one more choice: which is clearer? I chose, and she said, "Well, that's interesting." I had chosen the program from the first mapping instead of the one where we'd just gone through and balanced all the electrodes. Oh. Hm. We decided that we would override that opinion and give me the new balanced electrode program, because that is the direction we want to progress...and I didn't have a strong opinion which one was better than the other.

That is very different from last time, where I felt like I made progress by leaps and bounds each of the first several mapping appointments. It's not discouraging as such, because I can tell I am hearing better. This evening, I was talking with Joe and the battery died on the new processor. I told him to hang on while I changed the battery--then realized how much better I could understand his speech with the both processors than with just the old one. Perhaps that is a "bilateral wow" moment that I've been looking for. :) There will be more.