Reply to Someone Else's Cold Feet

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.
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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

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

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

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...