HollyAlonzo – Never Giving Up Hope

I’m home!!! Boy, it’s such a long trip from here to L.A. and back. Just getting there, or back home, takes all day with the airport security, layovers, and travel itself. It’s exhausting.

This is going to be rather long. If you want to read all about the trip, grab a cup of coffee and read on!

Edward, Mom, and I were the ones that went to Los Angeles. We left Isaiah and Dad at home. We had to fly out of Memphis which is about a 2 hour drive from here. We left the house at 2 A.M Wednesday morning. We got to the airport and got checked in. Then we got to go through security. Yippy. UGH, I hate dealing with the security people. Between Edward’s seeing Eye dog, me and all my gear, and having to take shoes etc off, it takes too long. I don’t like to be out of contact with people who can ACTUALLY talk to me. I also don’t like to not have my cane around. I feel completely lost just standing there in my own world with no cane or person.

Anyway, we had a layover in Atlanta. That airport is huge and is really frustrating for those of us with disabilities. But, this time it wasn’t so bad. Our connecting gates were very close. After grabbing something to eat we were on our way to L.A.

At the airport, a fellow NF2 crewbie picked us up. Thanks girl! The rest of the day was just relaxing. I was very nervous about the next day’s appointment. How would the ABI activation go? Would my ABI work? What would it sound like? Would I feel anything? I wonder if it will hurt? Will I be able to tell the ABI noise from my tinnitus? The questions in my mind kept racing.

I took my walker with me to L.A. because I knew it was going to be quite a distance for me to walk. I get tired easy, mainly because of my weak right leg. I walked over to the House Ear building and checked in. When going back to work with Steve, I saw Dr. Friedman. He gave me a hug. I wish Mom would have got a picture then, but she didn’t. We sat down and fired up the DBC. I’m totally loving this invention. I had Edward take the full size keyboard out of his backpack, plugged it into my braille note, and told Steve he could type away.

He said we were going to test the ABI to see if it even worked. My thought was here we go!!! He put the coil to the processor on my head and held it in place with a headband. Then he hooked me up to his computer and we started trying the different electrodes.

First electrode came on. All I felt was this shocking/tingling feeling on my tongue. Each electrode he tried was the same result. Sometimes the feeling was in my throat or the roof of my mouth, but I was hearing no sounds. My spirits started to plunge. We had tried 16 out of 21 electrodes. When we had tried them all with the same result, I thought my ABI had failed.

Then Steve turned the stimulation to a different level. When he went through the electrodes that time, I still only felt the stimulation. At last, one came with sound!!! I said, “Hey, now that one I hear something!” Steve got excited and typed, “really? What do you hear?” I listened a little longer and described the sound as a low tone sort of like a womp! His stimulation was pulsing every second or so, and it was like a “womp, womp” sound. There was no shocking with that electrode so we had a keeper! Now that I knew that the ABI did work, even just a little, I was excited.

The next electrode he tried did the same womp! A few after that only shocked. It was time for my appointment with Dr. Friedman. “Wow. Already? The morning flew by.”

Dr. Friedman came into the room. He’s great! I handed him the cell phone for the DBC (DB Companion) and he typed a greeting to me. Then I asked him if he would rather have a full size keyboard. This worked better since he had a minute to sit down and type. People can type faster on a normal keyboard than a phone keypad. We talked back and forth and I am doing well! He told Edward and Mom I look great. I believe all of my other tumors are pretty stable, which is a humungous relief. He would like an MRI in June to see where things are. I finally have a wonderful doctor watching over me! I had Mom get Dr. Friedman’s, Steve Otto’s, and my picture together and here we are.

After lunch I went back to Steve’s office/tune up place. We were on the hunt for a third electrode. He was hoping he could get three, and I believe he thought that would be about all we got. I’m not sure though, it’s just something I sensed. When he finally got to an electrode that gave some sound, it also gave shocking. He left it in the group because he didn’t know if we’d find anymore. A forth electrode gave sound and just a little tingle. He turned it down and the tingle went away but the noise stayed about the same. Finally a fifth electrode gave sound.

He set up a program with those five electrodes and turned on the processor and counted to ten. He warned me before he did it, “don’t expect to understand it, or it even to sound like a human’s voice.” I could hear him counting, but if he hadn’t told me that is what he was doing, I would have no clue. It just sounded like more of that womping each time he spoke. After he counted, he turned the processor back off. The plan was to send me home (to the Guest Center) with the ABI overnight to see how it went. I wasn’t too sure about that one electrode he left on that shocked. I thought in time I would get used to it, but it only started to cause pain each time I hear a noise. I dealt with it that night and listened to everything. Mom and Edward sounded exactly the same. There was no pitch difference yet. Myself, I sounded like a whispery robot. LOL I’ve always had a whispery voice because of the vocal cord paralysis, but I thought that was pretty nifty that the ABI let me know that I was different than the other folks talking with the whisper.

The next day, Steve asked how it went. I asked him to turn that electrode off because it was giving me a headache and making me jump when I heard a sound. He said we’d drop that one. We just had to find out which one was causing the pain. We found it and dropped it. Finally, it was completely comfortable. I could hear sounds without getting a headache or a hard shock. He counted again, but it still didn’t make much sense. Edward counted, but it didn’t sound like numbers to me. I guess that’s what most people say at the activation. At least that is what Steve told me. We scheduled another tune up for June and I was off to see what all I could hear and start the new experience of relearning to hear.

I complained about the time it took for me to walk from place to place. Edward said, “You’re doing good. Just think, last time you couldn’t walk at all, you were in a wheelchair.” I suppose he’s right but it’s still annoying that I’m so slow and get tired so easily.

The day went on. I was already getting a little used to this new sound. When I was around a lot of noise, it just sounded like white noise. I couldn’t distinguish anything. Once we got to the quiet room I could tell when people were talking. Mom and Edward went to get something to eat and it was just me in silence. That is when I picked up a lot of little noises like me typing, taking a sip of coffee, coughing, sighing, etc. Then I heard more noise and knew they were back in the room with me. Edward sat beside me and his iPhone was talking (voice over). I said “What’s that?” He said “my phone”. Later that night, he was testing me to see if I could recognize anything. He said, “tell me if you know what this is.” I said, “Static. It’s probably your IPhone. That’s what it sounded like before.” Sure enough, I got it right. He flicked his lighter for me and I faintly heard that. He asked me if I knew what a sound was, and knocked on the wall. I said, “I think it was a knock, but I’m not sure.” So I’m slowly getting the hang of this thing! Also when Mom and Edward fingerspell to me they say the words too, their words sort of make sense now. It may get better in time. I know if I could lip read, things would be fantastic!

I saw my buddy Jeremy out there and he and I had a direct DBC to DBC conversation. This thing is absolutely wonderful. I’m talking with people by myself. I didn’t have to have Mom or Edward sign to me at all. I was able to talk and get information from the doctor and audiologist myself. I’m finally getting some of my independence back! Before Jeremy left, I got a picture with him too.

I really love the guys out at HEI. They’ve done so much to help me and they’re still helping me. I hope someday I can help them in return. I go back on June 24 and see both Dr. Friedman and Steve Otto. I am going to practice a lot with my ABI and hopefully I’ll surprise Steve with my sound recognition.

I got back to Memphis after a super long day of traveling Saturday. When Isaiah got to me he kept waving “HI!!!” All excited and giving me a hug over and over. He would pat and rub my back, kiss my cheek, and rub his hands through my hair. I Said, “Did you miss me?” He signed “yes!”. I said, “I missed you too buddy.” On the drive home, he wanted to hold my hand. He is used to signing to me. When he finally spoke in the car and I heard him, he sounded like a little robot!!! I couldn’t make out what he said, but I heard my baby again. They say the more you use your ABI the better your brain gets at figuring out the new sounds. One thing is for sure, this ABI is going to get a whole lot of use from me. I appreciate all the prayers, good vibes, and support. You people have given the precious gift of sound back to me.