My Cochlear Implant Adventure

From: Healthy Hearing - Nov 17, 2003

Sherry Davis

Getting a cochlear implant was not on my list of things to do. Being deaf was as natural as having blue eyes and buying a box of red hair dye. Having gone deaf at 18 months old due to ototoxic drugs, taken for bronchitis, I had virtually no memory of hearing.

Wearing two hearing aids every day was as natural as wearing shoes and brushing my teeth. But every now and then I read about cochlear implants with the curiosity of a scientist, even venturing once or twice to show my husband the websites. ''Interesting,'' he said...''but not ready for prime time.'' I responded, ''I know, I don't want one anyway. They're just interesting!''

One day, an email with an intriguing link from my mother-in-law arrived. Thinking it was probably similar to what I had seen previously; I waited a day or two before I clicked on the link. When I finally looked, I knew something was different! Technology had evolved since I had last looked and it was a very exciting change! Dragging my husband to the computer, I asked him his views. ''Again?'' he said. But then he was on the website for an hour. Eventually he said ''It's ready for prime time.''

All the stuff about electrodes, speech strategies, channel interactions, High Resolution software and processing speeds were (to me) technical jargon -- way over my head -- but I gobbled it up like gourmet chocolate. I got out our insurance policy to make sure it was a covered benefit. It was. I made an appointment with one of the cochlear implant centers in town.

Mom went with me for the evaluation. She was worried I might not fail the hearing test. Or rather, she thinks I might pass the hearing test for the first time in my life! Either way, she was worried!

I wasn't worried. After 45 years of failing every single hearing test, I was reasonably certain I would fail again! Entering the sound booth for what I hoped would be the last time without an implant, I went thru a long testing process to prove what I already knew -- I was as deaf as they come. When the door opened, mom had tears rolling down her cheeks. She had a smile and a thumbs-up signal. She said, ''You're a candidate!'' As if there was any doubt! Of course Mom, I'm deaf, remember???

My surgery was scheduled two weeks later. I spoke to the doctor about the technical details of the surgery, the processor, the timelines, but all I really wanted to know was -- how much hair is he going to shave off. He says he'll just shave a one inch strip behind my ear. What am I going to do with a hair-do like that??? It became an obsession. He said I probably wouldn't even notice the missing hair, but of course, he's bald.

For the next two weeks, I worried more about my hair than about the surgery and the prospect of hearing. Hearing better was not something I related too. It made no sense to me. Did it mean I would hear louder? More clearly? Better? Did it mean speech comprehension without lip-reading? Talking on the phone?

I focused my concerns on what I did know. I was about to have a one inch strip shaved off the side of my head.

Everyone around me became excited about me ''hearing'' again and I increasingly became nervous about their expectations. I saw the doctor for a final pre-op visit and I told him I was worried about ''their expectations'' more than mine. He nods, he's seen this before.

I wasn't expecting to hear at my hook-up. It would certainly be nice, but it wasn't realistic. I don't know what to expect -- my hair was going to be my worry. I was told it'll probably take a year before I learn to hear. A year? I shall worry about my hair.

The day before surgery, the hospital called to give me instructions. My husband answered the phone. They wanted to talk to me. ''She's deaf.'' he said. They said, ''We still need to talk to her.'' He responded, ''She's getting a cochlear implant because she's deaf!'' They bicker back and forth but the hospital insists they must speak to me. I get on the phone so they can hear my voice while my husband was on another phone mouthing the words to me. I wondered, does this lady know what a cochlear implant is? Does she know what ''deaf'' means? What if I couldn't talk? She reminds me not to drink any water before surgery.

The surgery went fine. Two and a half weeks later...it's time for activation!

Andrew, my youngest son, flew into town. I was excited, filled with anticipation. I could not fathom what I was going to hear. I was prepared not to like it, as that's what my understanding was from the web forums.

They said it would sound robotic, with quacks and static, squeals, whirring, beeps and clicks. Nothing would sound right and nothing would make sense. ''That's what you're in for,'' they said. Boy, this will be a roller coaster ride. I hate roller coasters! Give yourself a year, the web forums said.

My audiologist was ready for us. We were in a small room, Mom and Daniel were there with me. The audiologist hooked me up to the computer and told me she was going to present a series of beeps. I didn't hear anything for awhile. Nothing. I was privately wondering if something went wrong as the three of them were intently looking at me waiting for a response. Nope, I didn't hear a thing. The audiologist just smiled. Or maybe that was a worried look. I didn't know.

Suddenly -- there was a weird sensation inside my head. It didn't feel like sound, it was more like movement inside my head. Was that it? If that was sound, I was in trouble! It was as far from what I imagined as could be. Nothing had prepared me for that!

The audiologist told me to tell her when it was comfortably loud and when it was barely perceptible. Well, the most comfortable loudness for me was not very loud and the softest sounds were not very far down from the comfortable level. Feeling things move in my head was not my idea of hearing! When we were done with the first series of beeps, she set up three speech ''strategies,'' CIS, MPS and SAS.

I was to try all three for the next few days and then return for additional programming on Monday. Uh-oh. What had I done?

The audiologist went to get everyone for the big ''Activation Moment.'' I was not sure this was going to work, but I knew with certainty it was not going to sound good. The beeps felt very weird. How will I make sense of my new world? I had no idea. This was not going to work..

The audiologist turned it on and said ''Monday, Tuesday.'' I was lip-reading, I didn't hear her. She had the volume turned way down. She turned it up gradually. I heard her, I think I heard her, but it sounded like a horrible, out of tune radio. Mom starts talking, Daniel starts talking, everyone's saying ''Can you hear, can you hear?'' I heard them but it sounded horrible. UGH. YUCK. It's what I expected, well, maybe a little. Or maybe a lot! Truthfully, it was much worse than I expected! I tried the second program and heard only ''hummmm.'' I tried the third program, it was all static. ''Try each for a full day.'' Oh no. What a long day that would be! Which program was going to be the worst punishment, I wondered?

We left. When we opened the door to the outside, the noise onslaught was incredible. Cars, trucks, traffic, everything! I was stunned. The outside world was a noisy place! I noticed those noises sounded relatively normal, compared to voices. But who wants to hear traffic noises at full blast? I guess I did. I didn't turn the processor down.

We went to pick up Grandma before we headed back to my house. When we got to the house, I heard birds for the first time.

''Are those birds?'' I asked. My daughter tells me they were indeed birds, and I had identified my first sound. When we got back to my house, everyone started grabbing Fritos out of the bag and I immediately noticed how noisy they were. Fritos! Crunch! Crinkle! Crunch! I went to the bathroom and when I flushed the toilet, I was startled to the point of almost dropping the processor due to the noise! I was ill-prepared for the explosion of the flushing toilet! I ran out of the bathroom as quickly as I could.

I knew that the quicker I got used to it the better off I would be. The ceiling fan was going and it was humming in my cochlear implant. Daniel put on a CD and sang ''I'm a Believer,'' but it sounded absolutely horrible. ''It's going to be a long year'' I said to myself. There will be lots of bonding with the aspirin bottle! I hate this! What had I done?

I kept changing programs trying to find one I liked, but I didn't like any of them. I wasn't really discouraged, but I was indeed eager to move the process along. I was surprised to have sounds moving around in my head. Or so it appears. That night I collapsed in a dead sleep. Before I drifted off to sleep I feel the sounds squirming around in my brain…

The next morning I put on my cochlear implant. I told Daniel about program two, how it was just a hummmmmm and I keep turning it up louder as I was talking. Suddenly, I heard my voice!

It took awhile to kick in but it sounded OK, as compared to program one! How strange. He brought me the newspaper and I realized it was exquisitely painful to hear the turning pages. The sounds generated by the newspaper are not ones I am used to hearing! I cringe every time the paper moves. Boomerang (the cat) jumps up to join me. She quacked! Puzzled, I looked at her in confusion. QUACK! QUACK! I ask Daniel if Boomerang was supposed to quack and he said ''NO, she meows!'' We obviously had a glitch there! I never heard her meow before, not even with a hearing aid. So I figured that if I heard her quack, I made progress.

I start a battle with the ceiling and computer fans. They are as loud as the TV at full blast. Everyone tells me to turn them off but I refuse. I know I have to learn to ignore sounds I have never heard before. Kind of ironic when you think about it! But they are blaring at me and it is wearing me down. I have five in my house and they are determined to kill me…. I know it. On the 17th day when I put my CI on, I no longer hear them. They have receded to the background where they belong.

Several months later…I find myself in love with my CI. Things are no longer painfully loud. I am now picking up random bits of speech without lipreading. I heard my first sentence on the radio...I hear random phrases from the TV…I can sometimes understand Daniel on the phone. Music is much better but not as good as I wish it to be. On 2/27/03 I was upgraded to ''HiRes'' and another new world opened up!

When my audiologst turned on HiRes, my mom and Daniel were with me. It sounded so...different! I was astonished…I bonded with it instantly. Sound was smoother, less jarring. Voices were more natural. Sounds were more distinct. For me it was like going from a black and white TV to a High Definition TV...the detail available within the sound, was a real thrill! That night, Daniel and I went out for dinner. I had no idea how HiRes would function in a noisy restaurant. When we walked in, I instantly heard background music, the hostess speaking and people talking at the many tables, and dishes clanging! Previously it had all run together in a ''mush'' of sounds and I couldn't hear the background music and each of the people talking. This time, it was clear. I was thrilled! I could hear my husband's voice clearly in the restaurant.

When we got home, I turned on our music and found it had improved significantly...and the song I picked was ''I'm a Believer.''

What a long way I've come since first hearing that song with my cochlear implant. Today I am never without my CI. I wear it from the moment I get up, until I go to bed. I hear very well…and as a prelingually deafened person, my expectations have been more than met.

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