Monday, September 26, 2005

sound & fury

From a journal entry dated: Thursday September 8, 2005

On Wednesday, August 3, 2005, a little more than a month ago, I took the first real step towards changing my hearing: I had the surgical procedure for the cochlear implant. My recovery has been a time of learning and growth for me. Going through my daily life with only one minimally functional ear was a difficult and, at times, irritating. Still, there was no going back, so I had no choice but to stick it out. After having the cochlear implant internal device implanted into my head, I had to heal before being able to have my processor (external device) “hooked-up” and programmed to work in conjunction with the internal device.

The process of the “hook-up” involves testing each of the 22 electrodes (each representing a different frequency or pitch) on the internal device, setting a threshold (lowest point of first hearing) and comfort (point of loudest comfortable hearing) for each of four groups of electrodes (among the total of 22). After doing this, the full range of electrodes is tested for consistent volume. Each electrode should be detected at about the same volume for the same sound at different frequencies. A program is then saved on the external processor. Then comes the moment of truth: listening with the implant and processor turned ON. The audiologist will then read a set of sentences to test your ability to understand speech using only the CI (no hearing aid in the other ear). Then you are given lots of user manuals and the audiologist goes over the features of the processor. You also learn how to take care of the processor and other external components. Even knowing each of these tasks does not fully prepare you for the actual moment.

I managed to get out of the house and drive to the hospital clinic without any problems for my hook-up appointment today. I was incredibly nervous. I knew that things would most likely go pretty well for me, but at the same time, in the back of my mind, I wondered if I would be one of the few who has a horrible, almost traumatic, hook-up day? I had read many stories of amazing successes, of horrible failures and disappointment, and of small, gradual gains over time. My mind toyed with every “what-if” that I could conjure. Nothing prepared me for both the mundane-ness and the wondrous-ness of the experience that lay before me.

My mother and Al accompanied me to the appointment. They both brought books to read to pass the time, as none of us knew how long the appointment would take or how interesting it may or may not be. After settling into Kathy’s office she explained what we would be doing and we got started. The processor was connected to a laptop computer that Kathy used to MAP the electrodes (some made up acronym that stands for nothing at all but basically means to program the electrodes for a certain schema). We had to spend a bit of time finding a strong enough magnet to hold the coil onto my head. My hair, even though I had it cut short, is extremely thick. My surgeon also told me that my skin is a bit thicker than average as well. These factors make it difficult to get a good magnet connection. First she had me chill out while she checked the electrodes to make sure that they were functioning properly. I didn’t hear or feel anything while she did this and it only took her about a minute. So we moved on to testing four different electrodes with progressively higher frequencies. This test was very much like the regular hearing test when a series of “beeps” is played and you indicate when you hear it. The only difference is that a series of a group of beeps is played (three beeps, four beeps, two beeps, etc.) and you indicate how many beeps you hear. The beeps themselves did not differ in sound quality to the sounds administered in a regular hearing test. For each electrode, we determined the softest volume that I could detect and set that as my T, or threshold, setting for each. We also determined the loudest volume that I could listen to comfortably as the C, or comfort, setting for each electrode. This took up most of the time. After we got everything set, Kathy saved two different programs onto the processor. One was the one settings that we put together and another was one with the same settings but a higher volume. The only thing left to do was take it for a spin. I turned my hearing aid off (in my left ear).Kathy unhooked the CI processor from her laptop and prepared it for the actual activation.
Right now, I cannot even recall what was going through my mind as the seconds ticked away towards one of the most defining moments in my life. I think that I was simply an open vessel, open to the experience and the moment. After a deep breath, Kathy gave me the processor to put on and turn on. WHAMMO! BOOM! KAZOW! No…. I didn’t hear that. What I heard was squeaky, warbled, wavering sounds similar to what one might hear if they were listening to a bunch of cartoon robots talking through a giant tin can at the end of a looooooooooooooooooooong tunnel. I could not help but bust out laughing. I think I laughed until I cried. My mother, Al, and Kathy were laughing right along with me, certainly thinking this was hilarious. Kathy, a Wisconsin native, certainly sounded “weird” to me, but now she sound a thousand times weirder to me. My mother sounded “normal” but a little “tinny” and distant. Her first words to me were “calm down” and that had the exact opposite effect on me. I stomped my feet in gales of laughter and with each new sound that I heard. Things sounded a bit like special effects from the earliest Star Trek movies, only more hilarious. My own voice is the oddest. It does not seem to be coming from me at all. Talk about strange!
After I regained my composure, Kathy gave me a sheet of paper with some simple sentences printed on them. She would tell me, “I am going to say one of these three sentences then you repeat it to me”. All the while I was aware that I was not looking at her while she spoke, thus not lipreading. I understood her perfectly. She still sounded weird but I understood the words she was saying. Kathy then covered her mouth with her hand and began to say each of the sentences in random order. I started out looking at her eyes, then just in the general area of her face. Finally, I simply averted my eyes to the tabletop, but not the list of sentences. I understood every word she said. I think I was simply too stunned to react to the fact that was quite obvious. After finishing the sentences, Kathy said, now, I am going to say some numbers and I want you to repeat them to me”. I got them all right. All of them until she got to…..19……….27………. and it really sunk in what I was doing. I was hearing AND understanding everything she was saying. I was powerless to stop the sobs that came. I didn’t want to be one of the “weepy” ones, but the amazement, joy, and immense gratitude that I felt simply overpowered me. I’ll never forget that moment. My favorite numbers are now 19 and 27.

When we finished the speech recognition part, Kathy gave us a 15 minute break to go to the cafeteria and get a drink or quick snack. We walked out of the ENT clinic into the atrium on the second floor. I think I took about four steps and stopped dead in my tracks. I asked mama and Al “Where is the water?” We looked over the railing to find a giant waterfall on the floor beneath us. We rode the elevator down and I overheard a nurse, standing about 12 feet from me, say “I really want to go down there bad”. I told my mama that I heard her. She was amazed. I stood in front of the waterfall downstairs listening to the beautiful sound of bubbling water and smiling. All the while I wanted to jump in and dance and splash like a little kid. In the cafeteria, we sat at a table in front of the TV. The noises were loud and there were so many different noises that it was really difficult to distinguish one from the other. I focused on the television, trying to understand the newscasters without the benefit of closed captioning. Then, I heard music that sounded like music, not noise! It was the introduction theme to Anderson Cooper’s show 360. I was thrilled that I could identify the sound as music.

On the way back upstairs to Kathy’s office, I heard telephones ringing, people talking, doors closing, and all other kinds of ordinary sounds that I was unable to hear previously. Back in Kathy’s office, we wrapped up loose ends and discussed what to expect and what to work on during the coming week. My doctor, Dr. Pyle, popped his head in briefly and I really wanted to just hug him, but I didn’t. I think if my mama had not been between him and me, I would have given him a big ole bear hug. I discovered the sound of the second hands ticking off on the wall clock and watched it in amazement for a bit. We discussed the “buzzing” noise I was hearing and decided to give it a couple of days to see if it did not recede or lessen as I became accustomed to the higher frequencies again. I gave Kathy a huge hug before we left. Mama and I walked out of the office arm in arm. It was just a big old hug fest. Al gave my hand a squeeze as we walked outside.

As Al drove us towards home, I heard many sounds I could readily identify and even more that I had to ask for clarification to identify them. I heard the blinkers immediately, the guy at the parking payment booth thing, the radio, mama in the backseat (without looking at her), and other simple sounds. At the BBQ restaurant near our apartment, things went slightly awry. I had trouble hearing and understanding even mama with all the many sounds bombarding me at once. Not only were there so many sounds, but the way they sound to me is just really weird. Needless to say, I started to get a pretty nasty headache.

We went home and I rested for a little bit. The dogs bouncing around created sounds I didn’t know existed. My dogs sound squeaky! Every move they make is a SQUEAK of some sort. I hear their tags and collars jingling when they scratch. I heard my cat “meow” for the first time in ……. Well ever I think! I can hear the phone and the cell phone ring. Against Kathy’s instructions to not try the phone just yet, I called *86 on my phone and listened to the voice on the line. I called my land line voice mail and listened to the old messages left on there. I had my mother call my brother and I talked to him on the phone very briefly. He sounded really odd, but I was actually able to understand whole sentences from him. Later my Aunt Kat called and I talked to her very briefly as well. I was able to understand her just as well.

I get excited realizing that while there were many things that I still don’t “get”, I do “get” so much more than I have for the past 20 years. I have heard sounds that I thought that I would never hear again. Today was the first day, the day of the “worst” hearing that I could possibly achieve with the CI. It makes me emotional just thinking about how far I can take this. I am so looking forward to learning to listen to all kinds of music, hearing people talk to me from across the room, without lipreading, and going to the movies. These are all things that most people take for granted and that I cherish. I am so thankful that God brought me to where I am today and gave me this opportunity. There are obstacles, sure. The way that things sound is very irritating. Sounds are not real consistent—sounds seem to waver between “normal” sounding and truly weird sounding. I get a pretty nasty headache in noisy environments. The magnet on the coil keeps loosing connectivity and falling off. The processor stays behind the ear pretty well with the ear hook. Some things just sound absolutely “synthetic” like a synthesizer or ancient special effects. The upside to all this? It can only get better, much, much better!

6 comments:

Lolly_Lolly0 said...

Wow! I am so happy for you! You've made my day. God bless you for sharing.
~ Lolly

Viv said...

that's wonderful, I have goosebumps! Iam so happy for you!!!

Cherish said...

You were always one of my fave people and as much as I dont like not seeing you as much.....I am very happy for you ....Thank you for letting us know how things are going....."hugs"

Cherish said...

Hope you Had a great birthday *hugs*

Cherish said...
This comment has been removed by a blog administrator.
Carmi said...

I am so glad I've decided to go back into the archives of my favorite blog reads. This is an absolutely beautifully written entry, one that galvanizes who you are and sears the impression in my brain.

What a blessing for you to have had the implant. What a blessing for us that you shared this with us.