HollyAlonzo – Never Giving Up Hope

I don’t write much anymore—not even on Facebook. I spend a lot of my time reading and learning new things. I am learning to use my ABI more and more every day. I am taking sign language lessons from a deaf-blind woman not far from me. I am told I am a good teacher. I not only work with Isaiah to teach him the basic things every child needs to know, but I also help him learn it in the form of sign language so he can communicate with me. His mind is completely open to creativity. He is excellent with English and he is getting really good at signing, too.

Isaiah is so smart. He’ll be 3 soon, and he is far more advanced than most kids his age are. I think he has spoiled me. IF I ever had another child, I doubt he or she could compare to him. He’s really a great kid. I don’t think that parents get this lucky twice in a row. I doubt I’ll have another one anyway because of the NF2 factor.

I have started to pick up a few things Isaiah says with the ABI. If he gestures or signs as well, I hear his tiny little voice and can usually pick out the word. I showed him the sign for “all day” and he picked up on it right away. That’s usually what he does. Show him a sign once or twice, and he has it–even if I don’t ask him for a few hours or a couple of days. When I finally do ask him how to sign that word, he will show me–correctly.

I’ve also started signing to him without using my voice. At first, he kind of hesitated. So I would supplement a little with moving my lips. But now, I am having to do that less and less. Today, I signed to him, “Do you like to play?” He signed and said, “yep. Allllllll DAY!” It’s SOOOOOO cute when he exaggerates his “all day.” I can hear that tiny voice saying it. It gives me a smile. I am showing him simple phrases in sign language like: “What’s your name?” “My name is…” “How are you?” “I’m fine.” “See ya later.” He already knew several of the basic signs from the whole time I have been teaching him–since he was around 6 months old. Now, he is learning more of the basics and learning to build simple sentences. He and I are able to talk more now. He might sign “drink” and then point to the kitchen. I ask what he wants to drink and he might hesitate. So I sign, “water? Or milk? Which one.” Then he’ll sign back to me that he wants water. He prefers it when you give him a choice.

Today, he also signed his ABC’s for me and counted to 10 in sign language. A few of his letters don’t come out exactly right, but that’s just his tiny hands. I know what he is trying to make, and with time he’ll be able to make them all perfectly.I am amazed at how quickly this kid learns. I believe I’m going to have a difficult time with him in school. I think he’s going to get bored because he’s going to pick up the information so quickly and the other kids will need more time. I know that is how I was in school. I was ready to move on and the teachers would stay on a particular thing for a long time to make sure EVERY kid understood it. So I would often get bored. I am also going to have to make sure he gets challenged in school. I’m not sure how to do that, though.

We have several print/braille picture books to read. But, there is one in particular that he wants to read all the time. He doesn’t really want to read the rest of them. Even this morning, I asked him if he wanted to read. He said, “Yes, Bedtime Book.” I said, “again? We always read that one. It’s not bedtime. Let’s read something else.” But noooo. It has to be his “comfort book.” It’s “Goodnight Moon.” He likes me to read it while he points out the pictures and signs what he’s seeing. One day when we finished it–it was sometime near noon–I said, “Ok. Let’s go to bed.” He jumped off my lap and said, “No way! Let’s play.” I said, “well, you wanted a bedtime book. Doesn’t that mean we have to go to bed now?” He said, “No, I just like it.”

He’s such a cute kid and well-behaved as well. Now, I can communicate with him better, and sometimes even hear his voice and words. I am so thankful for that. Thank you to every single person who made it possible for me to get this ABI. I use it from the time I wake up until the time I go to sleep—excluding the time I am in the shower or swimming (which I don’t do much anymore). I LOVE this thing! I don’t know what I would do without it.

Sunday I met a deaf-blind lady and her family. They live a little under an hours drive from us. It’s odd, we are practically neighbors and never knew there was a DB personal anywhere near us.

Her husband is fully hearing and sighted. He drove to our house and we got to meet. I was so excited to meet them. I found out that she teaches sign language classes at their local community college and that her second son is also DB.

When they got here I was instantly overwhelmed with signs. They kept signing words that I didn’t know and signing too fast. I finally got them to slow down, and come down to my level of signing, which isn’t much. I know some sign words, but my main communication method is fingerspelling. It’s very slow and tedious.

They said that they were going to give us, my family, private sign lessons so we could communicate better and also interact with more of the deaf community easier when we come in contact with them. They said fingerspelling makes your arm tired and you can’t keep up. Don’t I know it!

We had good conversation and I learned a few new signs. They saw how fast I pick up on signs. They would show me a sign, fingerspell it’s meaning and sign it again. I would repeat the sign and they would sign “yes” excitedly if I got it right, or sign the word again if I didn’t quite do it right.

The problem with me is that I know how to sign a lot of the basic signs, but I don’t know how to read them. I could read them with my eyes, but reading them tactually is WAY different. So once I get more practice at interacting with deaf people and reading these signs tactually it will get easier. I feel kind of stupid sometimes, though. They sign something and I tell them I don’t know what that is. Then they fingerspell it to me and I think, “I should have known that. I know how to sign that one.” Well, I know how to make the signs, but don’t know how to read the signs. I guess It’s kind of like a person speaking Ppanish. They can study and practice speakin it outloud all they want but then when a native hispanic comes around speaking spanish at90 to nothing, the person that is learning can’t get it unless they slow down and simplify it a bit. That’s kind of the way it is, Iam havingto learn a new language here.

But, I now have private sign classes once a week. So hopefully soon my family and I can start getting a little more fluent in it. And now that this family and mine know about each others existance, we can get together more often and that will also help me because I’ll have lots of practice and interaction with another deaf person.

So I’m very excited about this and hope it all goes well. Maybe someday, once I finally learn sign language fluently, I can help someone in the same way and teach other people who are interested learn to sign.

It has been a little over 3 months since my ABI was turned on, and WOW! I LOVE THIS THING!!!

I can’t understand when people talk to me. I think other people expect me to, and kind of wonder what the point of the ABI is since I can’t have a conversation with them. I still have to have them sign or type on the DBC. But, believe me, the ABI is awesome. There is a point even though I don’t get speech.

In just three months, I can tell when people are around me. I can walk and hear the tap of my shoes, others shoes, or the crunch of the gravel. I can hear the dryer running. I can hear when my CPU turns off. I can hear when water is funning. I can hear the “beep, beep, beep” of the microwave when food is done. I can hear Isaiah playing with his toys. Granted, I don’t always know what the sound is until I ask, but I’m getting better at recognizing them.

I hear Edward and Isaiah talk all day every day. I’ve started picking up on a few words. When I ask Isaiah something, I sort of feel his body shake if he’s on my lap, but I actually hear, “Nope!” or “yep!” If he makes a gesture with his word he is speaking, I sometimes hear the word.

Edward and Mom always talk while they sign to me. They have to speak slower, of course, to keep pace with the signing. But, I’ve started picking up on a few of their words to. Sometimes they speak a little faster than they sign. I will put what they’ve already signed, with what I heard and can finish their sentence for them. Or sometimes I can even tell what is being said if they only sign the first letter of each word. I can’t do it all of the time, and I get it wrong sometimes, but the fact is, I also get it right.

It’s only been a short time and I seem to be doing really well with this thing. I wear it from the time I get up, until the time I go to bed. When the battery dies I have to immediately replace it. I hate being in complete silence. I love this thing, and I am improving all the time. I just want to say thanks to everyone who made it possible for me.

I really do need to write more often. But, when I go to write a blog entry I can’t think of anything to say. I open a blank document, and it just sits there. I come up blank, so I close the document and do something else hoping that eventually something will come to me to write about.

My normal daily live is cooking things to eat, reading, checking email, looking on Facebook a little while, playing with Isaiah, and talking to Edward and my parents. I also chat on Windows Live with a few free fairly often. On days that I have to go to the doctor, or actually do something, I don’t have time for email, Facebook, or chat. I just read while I wait.

I love to read. You’ve heard me say it before, but I’ll say it again. Reading is my form of entertainment. I am not fluent in ASL so I can’t go to a play with an interpreter. I can’t go to the movies because I can’t see to read the caption. I can’t watch TV in my home for the same reason. I can’t listen to the radio, audio books, concerts, or any other form of hearing entertainment.

All I have is these books. I can literally go anywhere and do anything. It keeps me in touch with the world. I read about new things, that I would have no clue about see I neither saw or heard them. It’s sort of like watching a movies, a really long, detailed movie. But instead of me seeing and hearing the people, I am reading the “script” and I see what those people are supposed to look like, and say. So, while I read, the imaged play out it my head. I can be reading and start laughing, just like people would do if they were watching TV.

I read electronic braille. So I load a book onto my braille note, which is portable. I take it with me everywhere. When we get in the car to drive somewhere, I read while I can. Sometimes Isaiah pulls my hands off the braille and wants me to play hand games with him. So I do, but he gets bored and I get to go back to reading. If I am waiting in the doctors office, I read. Any time I am just sitting idle, I read. It’s my form of stimulation and it keeps me sane.

The ABI is working well for me. I go back to Los Angeles in August to have it tuned-up. I am starting to understand a few words when Edward or Isaiah talk to me. It’s really, really nice. At my cousins wedding, I thought I heard something that sounded a little like the “Here Comes The Bride” Wedding March. It made me smile. I had another cousin translate the wedding to me by typing what was going on and being said on the DBC. It worked well.

I have a slower paced life than most, but at least it is an enjoyable one. I take time to live in the happiness. I soak up the new sounds I hear. When people actually try to communicate with me, I feel like I’m the luckiest woman in the world. Reading gives me pleasure. I love to play with Isaiah and he and I are communicating really well these days. All in all, life aint back.

I’m doing it again. I am teaching myself. Only this time it’s not braille. It’s sign Language.

There aren’t many deaf people around this area. I could go to a University that’s an hour’s drive from my house and learn, but I’m not thinking a college class is the way I want to learn. I’m really not sure how much they learn either. It’s only one night a week for a semester. Anyway, it would be too much of a stress for me to worry about getting there and back and then study and all that fun stuff that goes along with a college class.

I am more of an independent studier. I move at my own pace. It’s usually quicker than most. I learn fast. But, if I don’t practice what I have learned I forget it, unless I really got it good in my memory. That’s going to be the problem with sign language. There aren’t people to practice with. I’m not sure what good it will do for me to learn if no one is actually going to also learn it and use it with me. Well…I can teach Isaiah as I go along and he will use it with me, so that’s the major plus. My mom will also learn as I go and use it with me. The problem is going to be Edward. He’s not enthused about signing. He’s never had vision before so the signs don’t really make sense and he doesn’t make them properly or makes them too hard and jerky, not graceful the way signing is supposed to be. I try to show him, explain the harder he signs that makes me thinks he is angry. So…he sticks with fingerspelling, which works…it’s just slow.

But, I am reading “The Joy of Signing” and it is a fantastic book. It has good illustrations for my mom, fabulous descriptions of the sign for me to read. I’m really enjoying it so far.

I’m sure I’m not going to be fluent or master the sign language. I probably will not use the ASL word order either. Since I am mostly around hearing people, it makes more sense to use the English word order. But I am good at languages and can figure out what the ASL is meaning, even if I can’t sign it back. Maybe later on I can work on learning the ASL grammar structure, but for now I’ll stick with English.

If it’s not one thing, it’s another. Now the problem is my braille note which the DBC needs to function.

The Braille Note works. It powers up, goes to all of the programs, do what it needs to do. The problem is one of the keys won’t work. It was working fine just two days ago. Yesterday I was texting with a friend. He said, “oh, did you know you’re “M” key isn’t working?” I looked, and holy moly he’s right! When did that happen? So I had to think, I remembered typing and “m” the day before to jump to a name in my contact list and it worked fine. Either way, it doesn’t really matter when it quit. The point is it quit.

We called the company yesterday. They’ve gotta be getting sick of me by now. They said that I’d have to send it in for repair. It will take 14 business days to repair. 7-10 business days for shipped there and back. That is over 5 weeks without this Braille Note, which means without the DBC.

I say, NO WAY!!! I have that appointment at NIH in a couple of weeks and I need my DBC there. After that, I go back to L.A. and I need the DBC there too.

Edward went to the store and got me a can of compressed air to try to blow that key and other keys around it out. See if that might help.

Guess what??

IT DIDN’T!!!!

So, I am just going to have to use it without the “m” key for now because I refuse to send it in. I try to think of words that will fit what I want to say that don’t use the letter “m”. But, it’s hard to type emails to people on the braille note now because almost everybody is at “gmail.com” or “yahoo.com” or “hotmail.com” and well…those have “m”’s in them.

Me and Tech…GRRRR!!!!

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.