HollyAlonzo – Never Giving Up Hope

As I am sure you all have noticed, I have been missing from the blogging world. I was having tech troubles, staying frustrated, and not really going anywhere or doing anything so it seemed like there was nothing to blog about.

My tech troubles started in April. Just out of the blue one morning my text messages on my DBC stopped working. I couldn’t send or receive anything. Whenever I would try to send a message, it would tell me, “Failed to send SMS.” I was annoyed because we couldn’t figure out the problem. It wasn’t a service issue, which we determined by putting my SIM card in Edward’s and Mom’s phone, which worked just fine. Suddenly all of the text messages that people had sent me came in, only it was to their phone where I couldn’t read it. But yet, when the SIM card was in my phone, it did nothing. Their SIM cards wouldn’t work in my phone either. So we called the company. They were puzzled as well and had me send in the DB Companion (which is the cell phone) and supposively they would replace it. The face-to face feature worked perfectly fine on the Companion. It was only the SMS that was giving me issues. After a couple of weeks the company returned my companion to me and claimed the problem was a software problem and they were currently working on an update. I didn’t accept this answer; it just wasn’t logical considering I know people that also have the DBC, and they weren’t having any issues with SMS. Finally, I got the company to replace the companion like they said they would to begin with and now we’re working good again. It was a frustrating situation, but it just goes to show that you can’t let these businesses, or anyone else for that matter, push you around.

I’ve also been reading a few really good books lately. These last two that I read were both rather long and each took about 3 weeks to a month to finish, which isn’t bad considering they were each over 400 and 500 pages in print and 1 print page is approximately 4 braille pages. Considering my slow braille reading speed, a month isn’t all that bad for 1200 or so braille pages (or more). I just started a new book yesterday, and it’s only 260 pages, so maybe I can finish it within a couple of weeks. My reading speed has improved a lot with the reading I do plus the DBC communications. I notice that I can carry on a TTY conversation easier and the other person isn’t waiting as long for me to have to read. If you stop and think about it, I’ve only been reading braille for 8 years, and I am self-taught. Although I already technically knew how to read, I am the equivalent of an 8 year old reading, in speed anyway. In a few years I am sure I will finally get the reading speed that I was once used to and things won’t be so irritating for me. Sometimes I get to where I am tired of reading so slow, I just want to hurry and get it over with, so I’ll have someone else read it and tell me the gist of what they just read.

Edward, Isaiah, and I just got back from Texas. We went to visit the Alonzo’s down there and had a great time. Although things are a whole lot more frustrating for me now, it was great seeing all of them again. It was harder for me to walk and get around because I didn’t get to take my walker when we went out. There wasn’t enough room in the car for it. So I had to walk holding on to Edward, who was working his Seeing Eye Dog and would take off fast. Maybe no one else thought it was taking off, but for me with balance problems, it felt like they just lundged forward. At times it was kind of stressful for me when we were out because I was just focusing all my attention on not falling. My balance is better now without that acoustic tumor, but I still need a walker, something I can hang onto tightly and put all my weight on if need be such as when I stumble or my legs get wobbly.

We had a lot of fun there in Texas. We went shopping, out to eat, to an amusement park, to the zoo, to visit friends and family, and a few other things. There were a lot of kids for Isaiah to play with, and he loved it. He actually said that he wanted to stay. I told him maybe he could go back before he starts HeadStart in the fall. We’ll have to see. At the amusement park I actually rode a couple of rides with Edward and Isaiah. I wasn’t sure how it would be, since I have no more balance nerves, and no vision to focus on. My vertigo can get pretty bad at times. The Carosale and the train weren’t that bad, they were slow of course. But then I got up the nerve to ride a swinging ship with Edward. Oh man, was that a trip! I have ridden this ride before, both when I was sighted and hearing, and blind and hearing. But it’s a whole new thing doing it without those balance nerves. Edward wanted me to ride more, but I told him I just had to take it easy. God knows I wouldn’t have been able to do a spinning type ride.

Everybody LOVED the DBC. I was able to communicate with everybody!!! The little niece and nephew especially loved typing on it to me. Edward’s Dad even talked to me on it a few times. They’re great! They try so hard to make me fit in and communicate with me. They even try to sign a bit. We saw a few of Edward’s uncles. I got to talk to them, too, on the DBC. One of his cousins signs well, she even teaches her kids and her student (she’s a teacher) how to sign a little. She loved the DBC too and she typed really fast on the little qwerty keypad on the phone, which tells me she does a lot of texting. *grins* I got to hold so many babies down there. They were all so precious. I just wanted to take them all home with me! The baby nephew seemed to be scared of me though, not sure why.

It was a lot of fun, and I hope we get to go down and visit again. Edward was kind of sad when we left. He said he hates living away from all of them. I understand that. I would hate living away from my family too. But, since we started out as a long distance relationship, once of us has to do it. We knew that in the beginning, but I think over time it’s starting to bother Edward. I just know that right now, I can’t leave this area. My NF seems to be growing out of control and I need to be close to my family for support. Even though I’m getting there, I am not fully adjusted to being deaf-blind yet. I still have little tips and tricks to work out and I do that by trial and error. Once I can fully be independent again, then we’ll see where we want to live, if it’s still here or closer to Edward’s family.

I have been emailed and contacting state agencies to try and figure out how I can learn more sign language and possibly get a support service person to go out with me. An SSP acts as a deaf-blind persons eyes and ears. They let them know what it happening around them. They guide them around if needed. They help with communication if needed to. Anything you see or hear, they translate that to the deaf-blind person. Right now I do not have an SSP although Arkansas has an SSP program. I just found out that it’s only in central Arkansas, and I am in the North East.

I go to NIH in a couple of weeks and have MRI’s and other testing. On the last day I am there I will meet with the neurosurgeon and go over everything. Then they’ll tell me if I am stable or if I need another surgery. With the way my NF has been, please, please pray that is has been stable.

So, I’m back in business and hopefully I’ll be blogging more.

Yesterday was May 5. That is a day I will always remember. The day my life was changed.

I had gone to the Emergency Room at the Arkansas Children’s Hospital. They had diagnosed me with Neurofibromatosis type two. They had told me I had a life-threatening brain tumor.

On May 5, 2000 I went in for my first brain surgery. When I was diagnosed, I didn’t know that I would soon be blind.

I never imagined ten years after being diagnosed I would be blind, deaf, physically impaired, no vocal cords, and the countless other issues I have.

But, at least I’m still alive to enjoy what life I have with my family and friends. I have touch, smell, and taste left. I have to have help walking places, but at least I can walk. I can’t speak very loud, but at least I can talk tat all. People can hear me if they hush and pay attention. I am going to look into getting a voice amplifier though. It will save me from having to repeat so much. I get frustrated when people don’t hear me, because I’m talking as loud as I can.

But, in ten years I slowly went down hill. It makes me wonder where I’ll be in another ten years.

Maybe the doctors will figure Neurofibromatosis out and be able to reverse my situation and the next ten years will be climbing up hill. Who knows? I can hope, right?

The National Institute of Health in Bethestha, Maryland is doing a Natural History Study of NF@. The study lasts five years, and they do testing every six months to monitor your NF2 and treat it if needed.

I was accepted into the study last week. For now, I no longer have to worry about battling the health care system trying to get the treatment I need. The NIH have some of the top experts in NF2. During the study, if I need any surgeries, they will be done there at the NIH for FREE. They do no do the ABI placements, so this wouldn’t have helped me get the ABI I needed.

It looks like I go for my first visit in June. I’m very excited about this. I will have top-notch care (like I did at HEI) and will be taken care of for a few years. Now I can RELAX. I was stressing out over not having a doctor for my NF other than Dr. Friedman and his team, but since it’s charity I don’t want to wear out my welcome, ya know?

Thanks everyone for you support! Things are looking up a bit for me medically, I think. Let’s hope it continues.

To some, I may have a boring life. To me, it’s interesting. I read every chance I get. When you read, you can go anywhere, do anything, meet new people, etc. I finally finished the book I was working on, “True Evil” by Greg Iles. It was fantastic, although a bit long. I hate to see books end. I want the story to keep going. What happens next? That is why I really like series.

This past weekend was our annual family reunion on my Dad’s side. It is always this time of year, because that was my Grandma’s birthday. Even though she is no longer living, the family still gets together then and we all go visit her grave.

The weekend before that, Isaiah was the ring barer in my cousin’s wedding. The wedding was beautiful. It was outside at a lake. Isaiah did a good job walking down the isle. I asked him if Kirara (bride) was pretty and he signed, “yes, VERY pretty.”

Isaiah was ADORABLE in his little tux. Right now, I don’t have a picture of him with the bride and groom. I just have this photo here, but it’s a good one.

I haven’t written in a while. Since my ABI was activated I have been getting out and doing more things. I haven’t had a lot of time on my hands. Well, the time I do I either play with Isaiah or read.

Right now I am reading two different books. One is a novel—“true Evil” By Greg Iles, and the other is a how to book, thought not exactly. It is going through the basics and ground rules so that you actually learn to build on your knowledge.

Mine and Edward’s anniversary is coming up. It amazing how much we have been through. It will be five years, but it seems so much longer. We have been there for each other during hard times.

It also makes me a bit sad to look back. To see how much I’ve lost. See how much I’ve had to change. Life isn’t terrible for me, it’s just different. I’ve adapted to my situation but I still wish I could be normal again, if only for a day.

The ABI is working out well for me. I am very attached to it. The simple sounds, even the white noise, is so comforting. To turn on the water and hear it running, to type on my keyboard and hear the clicks, to throw something in the trash and hear it “swish,” all normal everday sounds…but it makes my eyes light up to hear it. I can hear people talking, sometimes I even think I kind of hear what they are saying, but right now people still sound the same. Edward’s voice is slowly turning toward what I remember his voice sounding like. In time I’m sure the voices will continue to separate and I’ll be able to tell Mom from Edward, or Isaiah, or whoever else is talking.

This weekend is off to a wedding. Isaiah is going to be the ring barer. I’ll be sure and get pictures of my little baby in his tux. Also, he and I rode my cousin’s horse last weekend and I will try and get that picture up as well.

Time for me to go read while I have the time. Everyone enjoy the gorgeous Spring weather!

Today we celebrate the resurrection of our Lord, Jesus Chris. Thank you Yesterday I took Isaiah to church for an Easter gathering they had. There was music, food, candy, games, an Easter bunny, a magic show, and an egg hunt. Isaiah had a blast. He and I had our picture taken with the Easter bunny. I will have to see about getting that picture from somebody so I can post it on here. I really need to find an easy and accessible photo plug-in for this blog so I can put all sorts of photos up for people to go through. I have tons of wedding pictures and pictures of Isaiah during his first year. Maybe when I get a free moment I’ll search around for a good easy to use plug in.

I hope everyone has a wonderful Easter! Have fun but also remember why it is we are celebrating this day.

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.