Hupp Family News

Bilateral CI adventures in France

2011-03-02T21:17:00.001-06:00

Later this month I depart on another bilateral CI adventure: we are going to France for a week! We went several years ago, but that was when I was still wearing two hearing aids. The joke then was that I can speak (some) French, but I can't hear. My husband can hear, but he can't speak French!

That time, we went on a tour boat down the River Seine. I found that I caught some things (but not all) as she said each bit in French, then I caught other things (but not all) when she repeated it in English. My husband told me he didn't catch much of the English either. So we found I got more than he did, getting it twice.

Soooooo.... Will it be different this time? You betcha! I've been listening to some "teach yourself French" CDs over the past month, working to train my brain to hear the nuances of the French language. I can sense improvement! I'm still very, very far from "fluent," but I should be able to enjoy a few conversations, anyway.

I've also heard that many places in Europe are wired with loops, that I can access with my t-coil settings. I'm very interested to see (hear) how that works.

As bits and pieces come back to my memory, I'm starting to talk to my self in French. That counts for something, doesn't it??

A New Direction

2010-08-18T18:49:00.001-05:00

I posted this on February 27, 2010, on facebook:

When my second ear qualified for a cochlear implant, I was devastated. This was very much not the plan I had for my life. And it has indeed been hard to adjust to this new reality. Working in a preschool classroom is just difficult.

But it has also freed me up to be open to ask God, “What do you have planned for my life? Since I believe this is not a surprise to you, I also believe you have plans that include my deafness. I still have purpose and meaning--open my eyes to see what I should do now...”

If it were not for my hearing loss, I would not have inquired at Alexander Graham Bell Montessori School in January 2002. I would not have taken the Montessori training, would not have learned cued speech to work with the kids with hearing loss, and had the incredible sense of being exactly where God wanted me.

Now my hearing loss has progressed, and I need to move on again. The woman who hired me at AGBMS, Karen Brenner, left soon after to work on developing Montessori work with Alzheimer’s. My mom has been diagnosed with Alzheimer’s this year, and suddenly Karen’s work takes on new meaning.

I’m now pursuing that. The more I read, the more excited I get. I’ve decided to let go of my job teaching preschoolers (at the end of the school year, of course), and see where this new direction will lead. Karen says I can get a job doing something with this concept, using Montessori principles to work with people with Alzheimer’s. I don’t know yet *what* I will do, but I am finding out, one step at a time.

My mom lives two and a half hours away, so I won’t exactly be able to work with her regularly, but she is certainly my guinea pig. I’m taking a course this semester at the community college in adult psychology and aging. I am learning so much there, and in my interactions with my mom and the other residents at her assisted living apartment building.

I don’t know what I’ll be doing in the coming year, or years, but it’s exciting (and a bit unnerving) to take this leap of faith, that this is truly what I am supposed to do as the next big step in my life.

And it’s thanks to my hearing loss.

Church Music and Hearing Loss

2010-04-23T23:22:00.001-05:00

I wrote this in response to a leading question from a writer: "What's the point of singing in church?"
(Thanks Michelle! Go read her post here: http://theparablelife.blogspot.com/2010/04/singing-in-key-of-autopilot.html)
~ ~ ~ ~ ~ ~ ~ ~ ~
As a musician who has lost the gift of hearing, church music is a very sensitive topic. Yes, I still can hear, thanks to two bionic ears, but it's really not the same. REALLY not the same. So I've given a lot of thought to the concept of church music.

I can still sing by myself, and that's one way not to have to worry about being in tune. I still sound in tune to myself, at least most of the time. And I really do worship that way. Sometimes, of course, I'm just singing for the joy of the music, which is different.

But I really miss congregational singing. With my cochlear implants, music in church (or anywhere) is often mostly kind of mush, or a dull roar. That's really hard. I can no longer learn new hymns or worship songs, or at least not in the context of hearing it sung in church. And the old ones have lost some of their life, with the concept of “melody” being rather negotiable.

At one point in my journey into deafness, I used an FM system with my hearing aids. I got the sound delivered straight into my ears, no distracting environmental noise. And although the sound quality was so much better that trying to understand anything with just my hearing aids, I came to hate it. I felt like I was alone listening to the radio, rather than being in the middle of a worshipping mass of people. Yes, I can worship to (with?) a song on the radio. But it's not the same as being there live and in person, with the music and the **community** flowing around me.

That “distracting environmental noise” was what gave me the sense of being part of something larger than myself. I was in orchestra and choir in high school, and making music in a group was fantastic. But church music is even better, a different *kind* of experience.

If someone is off tune, does it bother me? Well, yeah, sometimes. (Ok, be honest. It used to bother me a lot of the time. Hearing loss has really taken me off my high horse.) But even before I lost my hearing, I came to enjoy it (more)--as part of being in community. I began to learn to listen more to the heart of the person singing, and less to their musical skill. If someone is lost in worship as they sing, that draws me more deeply into worship, too--even if they’re not so very well in tune.

I find that I get impatient with the music sometimes. That’s a really novel experience. When they repeat a chorus yet another time, I’m kind of tapping my foot, ok, are we done yet. I never, *never* thought I would be that way. When I was a musician, I could go on and on and on, caught up in the music. I have much greater sympathy and empathy for people who walk into a church and don’t know the music, aren’t used to singing with people--I mean, where else to ordinary, non-musician people sing together on a weekly basis?

I should probably develop this into a carefully crafted essay. For right now I am posting this rather unedited version.

Revising Me

2010-02-27T12:11:00.001-06:00

From my friend's blog as he looks for work, revising his resume: "I revise because I am being revised." That statement fairly sums up my life of the past 10 years, as I have lost my hearing. I launched my second job change this past week, because *I* am being revised. For me, working with small children is turning out to be incompatible with having two cochlear implants. This feels somewhat like a precious thing is being ripped out of my heart, so it's been a rough week. I have had to do the work of grieving what can no longer work.

But by Friday, having sat with my cup of tea each day and wept honestly before God, I finally woke up in peace. This is not to say I will not weep over any more cups of tea on this topic. As I walk towards the end of the school year with my little students, more tears will flow. But for now, in this moment, on this day, I have peace.

I am truly excited about the new opportunity before me, and accepting that I would likely never have headed in that direction if it were not for my hearing loss. So, with one hand, the hearing loss has ripped out a piece of my heart; with the other it is giving me a gift of a new joy for my heart.

Yes, I am being revised. And yes, it is intoxicatingly freeing to seek what new thing God has for me now.

(here's my friend Dave's original post: http://davelooksforwork.wordpress.com/2010/02/24/revision/ )

Reply to Someone Else's Cold Feet

2009-11-23T17:33:00.002-06:00

A participant on HearingJourney.com, the Advanced Bionics online support community posted she was having cold feet about going bilateral. I've had a lot of thoughts going through my head lately about going bilateral myself. This is my reply to her.

I haven't been saying much on HJ lately, but I'm reading many, many of the posts. I had cold feet about a second implant from the day I qualified. It was a wrenching journey of grieving my hearing loss. I wanted to keep that ear so so so badly! But I had no guarantee that it wouldn't quit totally on me eventually, likely sooner rather than later. It took me three months to say, "ok, you can pencil me in." (I have a really wise and compassionate audiologist!) It took another three months, up until 24 hours before my surgery day, to feel emotionally ready.

I'm a musician born and bred; it runs in my blood. My first implant was an incredible gift! I could understand the words, and I could pick up the melody ok, and I could find pitch with the natural hearing in my remaining ear. I have some amazing and wonderful music stories from my first implant; some are posted here in the Recipient Stories section. Letting go of that sense of natural pitch was the wrenching part of getting the second implant. I knew I would hear speech better and have greater comprehension of what I heard. That has been truly the case.

But. Music is hard. So much of the time it is a roaring mush, with bits of pitch change thrown in. If it's a single instrument or voice, I hear it beautifully! But that almost never happens, especially in church. I tested my second implant on one of these musical websites that gives you a few measures played by a single instrument. Two weeks after activation,with just the second CI, I got 11 out of 14 correct! I can indeed tell the difference between a violin, a viola, a cello, and a bass. (I played viola.) I can tell the difference between a clarinet, an oboe, and a bassoon. Listening to Peter and the Wolf is loads of fun! But my enjoyment of the worship songs at church is very limited, and on new songs I kind of make up my own melody to go with the rhythm I can hear and the bits of modulation I can discern. Some days that's enough; some days it's incredibly painfully sad.

So do I regret getting the second implant? No. Really, really, NO! I greatly appreciate having some directionality; I love being able to walk on either side of a friend and chat and have it not matter because I can hear from either side. I love the crispness and richness sound has with both ears that it doesn't have with just one or the other.

What I "regret" is that my ears quit and I have gone deaf. So my grief is not the fault of the CI's. It's the failure of my physical ability for auditory processing. The CI's ameliorate that SO much; but they don't give me back everything I lost. And they never could and they never can. They can give me back a lot, and my life is so much richer and fuller than it was with hearing aids! But I really do miss my music.

Does that help any with your cold feet? What helped me was friends around me that let me cry when I was sad or afraid or angry, and loved me and hugged me and walked with me through those awful 6 months before I got the second CI. You have to be where you are, and you need people around you who will support you in that journey. Each person's journey is unique. But love and prayer are applicable to everyone's journey!

Sorry this got so long. But I've needed to say this all for a while.

PS I was also scared to death of no hearing at all when I would take off the processors. But that's not been so bad.
-------------------------
Liz H - www.liz.hupp.com
late deafened adult; first pair HA's at age 33.
Left CI-Auria HiRes 3/2006; upgrade to Harmony 2007
Right CI surgery 7/3/2008; activated 7/11/2008

One Ear Versus Two

2009-10-22T11:25:00.002-05:00

I read this recently on an AB cochlear implant forum, and it is the best word picture I have heard yet to describe the difference between hearing with one ear versus two:

"Hearing with two ears is like seeing with two eyes: Depth perception. The world becomes three-dimensional and you're right in the middle of it, not flat like it is with one ear. Hearing with only one ear always made me feel like I was listening to books on tape: Interesting story, but not one I felt a part of. Stereo is 3-D. You are IN the action." (Thanks, Maggie!)

Travel Hearing Stories

2009-07-06T16:53:00.003-05:00

We flew from Chicago to Tokyo yesterday. Eleven hour flight. But it was nice to take off my ears when it was time to nap.

For the first time, I tried using my Panasonic noise-canceling headphones to listen to the movie. (It was captioned, but in Japanese!) I heard adequately well, probably as well as anybody else with the free in-flight headphones. There were four movies; I only watched two: New In Town and Monsters vs Aliens. It was fun.

The interesting thing with the noise canceling function on is how much better I can hear my husband talk to me, even though sound is muffled by the headphones. Never thought of that.

Going through customs was unnerving, given I don't speak a word of Japanese. And they are conditioned to speak softly, so I was very worried about hearing those who do speak Japanese. Everything was fine; they waved us through. I figured out how to buy the right ticket to get us into Tokyo from the airport, then figure out our hotel was actually near the airport rather than in Tokyo, and get a refund for the $90 we'd spent on the train tickets.

What a relief it was to settle into our hotel room! Joe fell asleep immediately. I went to the little convenience store in the lobby to get some dinner (a bowl of fruit and some potstickers). And I learned how to say thank you in Japanese. It brings such a smile to people's faces when you just try.

Poison, or Not

2009-06-25T08:06:00.003-05:00

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

2009-06-24T21:19:00.002-05:00

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

2009-06-24T18:35:00.002-05:00

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

2009-06-17T21:50:00.003-05:00

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

2009-05-31T22:24:00.001-05:00

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

2009-05-31T22:22:00.000-05:00

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

2008-07-31T18:47:00.002-05:00

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

2008-07-19T12:04:00.004-05:00

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

2008-07-18T23:16:00.002-05:00

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

2008-07-18T22:05:00.004-05:00

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.

Grocery Shopping: Now THAT Is Exciting!

2008-07-17T15:34:00.003-05:00

I just went to the grocery store for the first time since surgery 2 weeks ago. Freeeeedom! I walked slowly and hung on to the cart so I didn't have to worry about balance. I filled my cart with things I've been missing. I got to the check out and remembered: I'm not supposed to lift! OOOPS. I could get things in (and out) of the cart one at a time...but to the car? And into my house? Tactical error...or at least challenge. I had the bagger get my bags in my car. That part was easy. Fortunately my son was home and could carry everything in for me. It's 90 degrees here, so I was a little worried about my perishables. I was so glad David was home!

And now I have to listen to my body and go take a NAP!

Listening Gym

2008-07-16T20:46:00.000-05:00

I went on the Advanced Bionics "Listening Gym" site where they have listening activities to build skills with a new implant. Last night I just took the placement test to see where I am in their skill levels. This was with just the new implant. Five days after activation, and I scored 80%! WooHoo!! I am delighted with how well this new implant is doing, so quickly.

It's a fun site, so I'm looking forward to doing more practice.

And my appetite seems to finally be getting back up to normal. I had a craving for a steak quesadilla, so I picked one up at Baja Fresh. It tasted GREAT.

Feels Not Quite Fair...

2008-07-14T11:33:00.002-05:00

I have been doing very well, but I stood up funny from bed around midnight last night and got clobbered with vertigo again. ARgh! And 12 hours later I'm still feeling woozy. Oh well. I guess this is just part of the program, little surprises in the common course of recovery from surgery. But it still feels not quite fair. Sigh.

I've already heard from another CI friend to keep sleeping with my head up. I thought I was done with that; last night was the first night I went back to just one pillow. A bit premature, I guess. AND I learned a lesson about taking the rest I need! I got home from a quiet visit to a friend and let myself get sucked onto the computer instead of taking a nap. I ended up canceling the various things I had planned for today, which is the wiser choice, and have slept a lot again. Learning to listen to my body more carefully...

Day Two Activation #2

2008-07-13T18:01:00.002-05:00

My first bilateral Sunday service was kind of a non-event. It was definitely better than with my hearing aid, but it was not yet better than using an iPod earbud in my right ear with the FM system at church. Familiar things were pretty clear. Words to unfamiliar songs were just as challenging, ok enough with lipreading the musicians.

Several people asked how things are going. I told them the implantation was successful, activation was successful, and I made it through the wicked vertigo after surgery. I also said the main thing I'm grateful for is the lifting of the heavy mantle of anxiety I've had since I found out my second ear had crashed and qualified for the second implant. Now it's done, it's working, my brain is learning how to hear with it, and I can get on with my life. This is good.

Day One After Activation #2

2008-07-12T18:39:00.000-05:00

Fun soft sounds today (I put on just the new CI while getting dressed and driving to get the new magnet spot shaved):
- moisturizer pump squeak
- blush brush - quiet swish swish
- wiping my shoes on the mat when I came back inside with my dog from wet grass
- garage door motor - kind of metallic, kind of "real"
- back up beep in Prius - not just "fffft" - some higher beep tonality
- click of turning on the headlights - sounded jsut right
- click of turn signal - sounded just right
**quiet sigh of satisfaction** - sounded very just right. :)

Finally I Can Breathe Again

2008-07-11T18:51:00.002-05:00

I feel like I've turned some major corner, like there is suddenly light at the end of some tunnel I didn't realize I was in, like some huge weight has been lifted from my shoulders. It's so striking I had to stop and ponder it...

I think I've been subconsciously "holding my breath" ever since February 13, when I found out I needed this second CI. It was such devastating news. I really thought it would take 5-10 years, not just 2, before the hearing in my second ear would fall badly enough to qualify for a second implant. I have been on pins and needles, under a dark cloud, holding my breath for five months, waiting to see if this 2nd CI would work. Every time I couldn't hear something, over the past five months, I would catch my breath--will this 2nd CI work? Or will it be worse, being stone deaf when the processor is off?

I will admit that I wore my processor to bed the first night after surgery. I wasn't willing to give up sound. I think I took it off around 4AM, but set it on the nightstand, with the battery just disconnected, so I could whip it back onto my head in an instant. The second night I took it off a bit earlier (maybe 2AM instead....) but by the third night, I was ready to take it off when I climbed into bed. But I still put it on the nightstand. And it was the first thing I put on in the morning (before, I would wait until after my shower to put it on). I think it was maybe 5 or 6 nights before I put the processor into the desiccator (what we CI folks fondly call "putting our ears to bed").

I couldn't get my incision wet for five days after surgery--which means I couldn't wash my hair. O.o So I was eagerly anticipating getting into the shower on the fifth day. I took off my processor and the world was silent. I climbed into the shower, and it was really weird to have the water running over my face and not be able to hear the shower. BUT! And this is a very important but! It was not frightening. That is a huge difference. It was weird, it was odd, it was strange. But it was not freaky, scary, or terrifying.

When I got home from activation today, after Joe dropped me off and went back to work, I just sat and crocheted. I needed to rest my brain. I put on a favorite CD that I can enjoy with my other ear--Brandenburg Concertos--and just quietly sat. I didn't think about how the CD sounded, I didn't have to think hard about my crocheting. Then I began to think about making dinner (which I haven't done much of since my surgery). I realized I had energy! I picked out four cookbooks and looked up recipes for ingredients I have in the house. I picked out what to make for dinner. I set the table pretty. I had a bounce in my step!

I feel like I've lost a hundred pounds. I don't have to be scared, holding my breath, worrying about this surgery and activation any more. It's here, it's done, and it's well on its way to working--to working very well, no less.

After dinner, I took off the old processor and had Joe talk to me. I parroted back whatever he said, odd quirky humor and all. He said it was painful to have to listen to his own humor! :P But I was getting it right. And when I understood something and made a comment, Joe would parrot it back to me. And we ended up giggling and laughing--oh, my, this feels so good. I am so very grateful to have this off my back.

Now the cloud that is settling is one of peace and light. This is good.

Activation Day--Oh My!

2008-07-11T16:49:00.001-05:00

WooHoo!! Speech comprehension out of the gate again!

The activation was very different from last time. This time, she turned on all the electrodes at once, at zero level then slowly increased them all together until I had the first perception of sound. After marking that, she increased the (blanket) level until I could begin to really hear her voice to a "comfortable" level. And I could understand her words immediately! I tried so hard to steel myself just incase I couldn't, but I have to admit I really was "expecting" to be able to understand. It was a HUGE relief when I could!! I didn't realize how much of a relief until she said something like, "Ok, are you feeling relieved now? You can start breathing again."

Then she gave me a few phonemes: ahhh, oooo, eeee, shhh, ssss, mmmm. I could hear each sound, although they really sounded pretty much the same. As we went through them again, I could tell they sounded at least minutely different. Then I was able to identify them correctly when she gave them to me one at at time--about half to 3/4 on the first try--five minutes after activation! WooHoo!!!!!!!!! Amazing. Totally Amazing.

The comfortable level kept increasing over the course of this initial mapping, as is expected. Oh, and at the beginning, after the computer recognized that the external part was indeed talking to the internal part, she said, "First we have to blow the crud off the electrodes." Joe called that the technical language version. So she said, "we have to stimulate the electrodes to eliminate any air bubbles or anything else that may be trapped on them. You know...blow the crud off."

Then she asked if I was ready to go bilateral. Oh, my--already?? Yup. So I put the first CI on, then she started talking and turned on the second, watching my face the whole time. It was sort of a non-event. So she said, sometimes the bilateral wow moment is when we turn off the second one and you go back to just one. It took a few times turning the second one off and on before I could put words to the difference, and that mostly after we balanced the two sides to her voice sounded centered in my head. Over time, that has become the cool part--having sound be centered in my head, not way off to one side.

The sound is still metallic and mostly monotone. Already (a couple of hours later) it's a bit less monotone. What surprised me was she told me to wear the two together all the time, with only about an hour a day of focused work with just the new one. I had expected to have to wear just the new one MOST of the time for about three months. She said, no, it will catch up just fine this way. She said something about this having been my better ear and also that it is my second implant. So that's what I'm doing!

On the drive home, I noticed that I could hear Joe better, even with him on my old CI side. I also noticed I could hear it when I drummed my fingers on the armrest--I would never have heard that so clearly before.

So now I have to get used to having another magnet on my head--I keep knocking it off. Heh. Time to stop at the hairdresser and have her shave the new magnet spot. And probably it would be good to use some of my toupee tape on the new magnet as well, especially until I get used to it being there.

I'm off to do some fun hearing stuff--don't know quite what yet, but I'll let you know!
Signing off for now,
The Latest Bilateral Bionic Babe! :D

Thoughts Activation Day Morning

2008-07-11T08:50:00.004-05:00

I realized last Wednesday morning (the day before my surgery), as I drove up to the regular Wednesday noon Eucharist and prayer service, that I was no longer scared. I wasn't even nervous. I just felt happily, quietly at peace. It was a wonderful feeling. The outlook of going deaf hadn't changed--it was my heart and mind that had changed. I had done my work of grieving and of acknowledging my fear, and I was ready for my surgery. It was a very satisfying feeling.

Morning of the surgery, i was so happy! I couldn't stop smiling. I pulled the same trick, telling everyone, "I'm a preschool teacher. You have to let me take your picture for show and tell." One person said, "Well, if it's for little kids, that's ok. I just don't want my picture ending up on YouTube!"

Last night was my first time to join a live chat on www.HearingJourney.com -- my CI manufacturer's peer support website. It was fun. Trading stories about waiting for activation, talking about who's going bilateral, who's going for a mapping in someone else's city and can they meet up for coffee at the airport. They really know each other, and I know many of them from reading their blogs.

Now it is time to go downtown for MY activation. The doctor will remove the staples first. I think there's only maybe five of them? The incision seems to be about 2/3 the size of the last one, and I was told it was small! I have my camera in my bag, and I have my black/blue/green/yellow eye covered with a few layers of makeup! (I have to be a little vain since people want me to post this on YouTube...!) So off we go!