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.

I know, I know. It’s been forever since I’ve written. I’ve been really busy trying to get everything in order for this trip to Los Angeles.

Thursday I have appointments with Steve Otto (audiologist). And Dr. Friedman. Friday I meet again with Steve Otto to finish up the programming for the Auditory Brainstem Impant.

I am very, very excited and also a whole lot nervous. This is it folks! This is what I’ve been working toward for over two years now.

All pray for amazing success when the ABI is activated. Also pray for my health, the my NF2 gets under control soon. Will write, or have Edward write, and let everyone know how it’s going in L.A. Until next time…

For most of my life, I have been, shall you say, overweight. In school, I was made fun of. I wasn’t as skinny as the other girls and not as pretty.

I tried dieting. It never worked. I hated most exercise because of my physical limitations. It was hard to go on diet food when there was so much junk food around.

I never was extremely big, but overweight compared with most other girls and according to the medical professionals. January 2009 I decided to try once again to lose weight.

Isaiah was then eating whatever we ate. I started cutting back on food by making me a normal sized plate and sharing it with Isaiah. I would feed him all he wanted of it and eat the rest myself. Within a few months I had lost 15 lbs.

I took a break from dieting even though I wanted to lose more weight. It was too slow and seemed hopeless. But at the end of the summer I started dieting again—serious this time.

Once I had it set in my mind, no one could change it or tempt me into eating junk food. I had never been able to get this resolve before, but this time I was firmly set of losing weight.

I cut out all sodas, all tea, all sugar, all breads, all starches. I drank nothing but water for two weeks. The variety of foods I was eating was limited. It was mainly meats, a few non-starchy vegetables, eggs, and cheese. Fruit had to be limited because it is high in sugar.

It is rather boring, but the trick for me what to mix things up. One morning I would have scrambled eggs. The next I would have sausage mixed in with the eggs. Occasionally add cheese to it so that I am not eating the exact same thing every day. For lunch have a salad. How many ways can you make a salad? Well, a lot. Sometime just have the salad vegetables and ranch and shredded cheese. Sometimes cut up grilled chicken in it. Same with ham. Put some chunk in with the cheese and ranch, and even add a boiled egg. Mix it up so it’s something different each day. I would even have salad for dinner sometimes and put taco meat on it, if that is what I cooked for Edward and Isaiah. I always found a way to make it a little interesting and still be something I could eat on my diet.

I previously hated any kind of “fake” sugar. It just tasted weird. After two weeks of nothing but water and not a single bit of sugar, the “fake” stuff tasted pretty darn good. Diet soda—something I could never stand before—tasted like the real thing. I began eating the Adkins’ meal replacement bars for breakfast. Edward and my mom say they have that “fake” taste to them, but to me they taste perfect! Isaiah loves them too. He got so used to seeing me have one of these in the morning, he began telling Edward “Momma needs her bar and some coffee.”

There were a few times when I was out, and slipped and had a cheeseburger, but it was never often and it never made me stay off the dieting track. The holidays were rough. There are so many yummy sweets, you have to indulge…just a little.

I love to cook. It’s something I am good at, especially baking! I am not afraid to get in the kitchen and try something new, and surprisingly it never turns out too bad. I adapted some of my “Holly” recipes to fit onto my diet. Using Splenda and Almond Flour I could make cakes, cookies, brownies, etc.

By January 2010 I had lost 60 lbs. My goal was 50. I feel great about myself now. I am small enough that Edward can carry me if he needs to—like if I fall he or anyone else can help me up easier.

One morning I fell here in the living room. My chair tipped over while I was getting up. Isaiah rushed over and tried to pull me up. I laughed and said, “Sorry Zay, you’re not quite big enough yet. Go get Daddy.” He did, and Edward came and helped me back up.

I see people I haven’t seen in a while. They are amazed by the weight I’ve lost. They all want to know how I did it. Exercise would probably help most, but it’s not something I can really do. I had to stick with the foods. It was rather a strict diet, and you have to stay firm in your resolve, but it does work. For anyone that says “You can’t lose weight without exercise.” I am hear to prove them wrong. I was in a power chair when I lost the majority of that weight. I literally did no exercising. My diet would fall under “low-carb” but I did not follow anyone’s plan such as Adkins’ or South Beach. I used some common sense and cut out the sugars, breads, and starches. If you do that, you are going to lose weight. Try it.

Thank God for the ability to adapt. We can get through anything if we try hard enough—even if it seems like we can’t.

When I lost my vision, my hearing because stronger. I believe everyone has this strong hearing, most just don’t use it. With sight, you t end to tune out a lot of what you hear. Being blind, I used everything I heard to tell me where I was, who was around, what was happening, etc. I though for sure without my hearing I wouldn’t know anything, which was a scary thought.

Well, Guess what folks? When you lose vision and hearing the other three senses intensify. It’s amazing what I can figure out by smell. Take women for instance. Even if 3 women wear the exact same perfume, they each smell a little different because of their body chemistry. I noticed lately that I can tell when someone is around by their scent.

Also, vibrations and things I feel. When someone walks by me, the floor vibrates. When Isaiah is playing, I can feel him through the floor running and jumping. When I’ve felt him playing and suddenly the floor is “silent,” it usually means he is either getting into something or has left the room. I have to go investigate.

I can sometimes tell who is approaching me by the way they walk. Edward is so light that he sometimes doesn’t make any vibrations. It depends on his mood. When he is thinking about something and pacing around, I can tell that and know something is on his mind.

One day I was sitting in a recliner reading my book. I asked “Who just came in?” It was my aunt. People asked, “how did you know someone came in?” There were a couple of clues that let me know. The first one was the cold air. I knew the door had opened, but I didn’t know if someone came inside or when outside. Then I smelled a different perfume that wasn’t there just a few minutes ago. Then I felt someone walking a crossed the floor. All these clues had let me know that someone came in, and there was a woman in the room.

You learn to pick up these kinds of clues unconsciously. Being deaf-blind isn’t so bad once you have adjusted. Don’t get me wrong, it’s scary at times—especially in public places—and it gets pretty lonely, but if you pay attention to the clues you can pick up from other senses, you can still get a lot of information and not be completely ignorant of things going on around you. Thankfully we have these other senses to fall back on. Like I said, Thank God we can adapt.

For the past week, I have been playing with a new device. I am totally loving this!

An Agency for the deaf purchased me a DeafBlind Communicator. I can now make my own phone calls using TTY, do face to face conversations with people who can not sign, send and receive SMS text messaging, and do instant messaging on Google Talk.

When I lost my hearing, I couldn’t do text messaging on my cell phone anymore. In order for me to use my cell phone, I have to use talking software, which doesn’t really help a deaf person. There were some of my contacts who only do text messaging and nothing else. When I was unable to do it anymore, I lost contact with them. But now I’m back!

I feels wonderful to be able to do something as normal as sending a text massage. Also, the face to face feature has opened a lot up to me again.

My brother and I used to talk pretty often.  Since I lost my speech recognition, and he doesn’t sign, we didn’t talk much lately. It’s been about a year or more since I have really talked to him. We would always say “hi” to each other, and give each other a hug, but that was about it. This weekend I was able to talk to him, his wife, and oldest son.

It was great! The conversation, the feeling of actually being in the same world everyone else is in. They type to me on a little cell phone keypad and it comes to my device in braille. I can speak my response, or type it and it will go to the cell phone they are holding. It’s fantastic! I don’t have to be lonely anymore. This DBC will make my world open back up, and I won’t be so isolated.

Edward and I are now able to talk at a distance. Before, if he was gone to the store, we had no way to communicate even something as simple as “do we have enough milk?” Now we can just text each other and get our answer or whatever it is we are needing.

I love technology.  It makes so much possible for me. Whoever thinks of this stuff is amazing! I wish all deaf-blind people had a DBC. It really does open up the world to us.