If You all remember, I started having DBC problems back in April. They only continue.
In April, my DB Companion–which is the cell phone that allows me to do SMS and face-to-face conversations–started acting up. I could send or receive any text messages. Sometimes the face-t-face would work, but other times it wouldn’t. I did a lot of arguing with the company to get this issue resolved.
Finally, in May, the company replaced the phone. Since it was under warrantee, this is what they should have done without me having to challenge them. They were trying to tell me that a new companion wouldn’t help. It was a software issue. They were currently working on an update. But, I knew that was a lie. I know WAY too many people. Other people with a DBC were not having this problem. How could it be a software issue that effects all DBC’s but yet, I’m the only one? But they finally sent me a new companion and…IT WORKED!
But, as soon as I got my new companion, the “m” and the “2″ keys quit working on me. This was very frustrating. I would try to think of works that didn’t have an “m” in it. You don’t realize how common that letter is until you can’t use it. I couldn’t write any emails from the braille note since they all involve those two keys. There is no way around the at sign. You have to use “2″
Even though this was very frustrating, I managed. I didn’t want to send it in for repairs because I had to go to the NIH and then to L.A. I wanted my DBC for those two appointments. I could deal with the broken keys until after those visits.
Wrong. I made it to the NIH with my DBC, and it was helpful then. With the broken keys I would just have people type to me so I could read it in braille and then instead of typing back to them I would use my voice. But, between the NIH and the L.A. trips, my DBC quit charging. Oh boy. What to do now?
Well, I had to send it in. What else could I do? It simply wouldn’t charge. It was probably the power cord/adapter, but there was no time to order a new one and have it shipped. I was leaving for L.A. in a week. The machine was going to have to be sent in anyway because of the keys, but I was hoping to have it for my appointments in L.A. I sent the machine and my power adapter in together. I wanted them to tell me if it was the power cord that was causing it not to charge, or if it was the actual power socket on the machine that had gotten lose.
We called to make sure they would test the power adapter before sending it back to make sure that was the reason it wasn’t charging. It wouldn’t do very much good if it was the cord problem after all and the machine still not charge when I got it back. They said they would. They sent an e-mail and said everything was fixed and sent the machine back to me.
I received my braille note back on Thursday. YIPPIE!!! It’s back! I was thrilled. I turned it on and tested the keys. They worked. I checked the power level and it was at 60%. Obviously the charging issue was fixed since it was completely dead when I sent it in. It having 60% battery meant that they somehow got it to charge.
I played with the machine for the rest of the evening on Thursday. I sent a few text messages, enjoyed reading my book, and a few other things. After a few hours, I got the message “batter is low.” No problem. I’ll just plug it up.
When you plug this machine up, “AC Adapter On(or off)” pops up on the braille display, even if the machine is turned off. But, when I plugged the cord in, nothing happened. I tried disconnecting the cord from the actual adapter and reconnecting it securely. Still, nothing. I e-mail the president of tech for the company. He told me what repairs had be done. But, they didn’t fix the socket or replace the cord. He said that the cord worked just fine in house. I left the machine plugged up for a while and when I went back and looked at the adapter, it wasn’t even a bit warm. That told me right off that power wasn’t getting to the machine.
Techman insisted they tested my cord and it worked fine. I told him some how I doubted it. This was the same guy who tried to pull that “software issue” on me back in the Spring. I asked him how my cord would not work at home but when I send it in it miraculously starts working, but when they send it back to me it’s dead again. Finally he agreed that the machine didn’t seem to be receiving power. He gave me the specs of the adapter.
I took those specs into radio shack today and they let me try an adapter they found to match them on my braille note. IT WORKED! See? It was the cord.
So now, I have my DBC back. My Braille Note and DB Companion are both in good working order. I have the ability to make TTY calls, SMS messages, and the beloved Face-To-Face conversations again. I missed this thing! I’m so glad it’s back.
Being deaf-blind isn’t exactly fun. There’s a lack of stimulation. There’s nothing to see, nothing to hear, and you get very bored. Often, we DB folks find ourselves day dreaming.
This is what I was doing tonight. Day dreaming, thinking, recalling things I’ve heard or seen in the past.
I song came to mind, Mariah Carey – Hero. This is one of my favorites. I can’t remember exactly when it came out. I remember at the end of 4th grade, in 97, this song played as photos that had been taken throughout the year were on a slide.
Everyone always tells me how strong I am. With my emotional strength and hope for life, I inspire people. I don’t see myself as anything special. I am just simply doing what I have to do.
People say, “Oh I can’t imagine.” or “I don’t think I could do it.” I’ve often thought these same things. Remember? I didn’t think I could handle being deaf as well as blind? But I did in the long run because I had no choice.
I’m glad that I can inspire people and give them hope. Really, I’m glad I can show them that no matter what happens, you can get through it. This son says it all. I am thinking of this as my new theme song. We fear the unknown, but we all have the strength to handle those fears when it comes time.
Cast your fears aside and you know you can Survive.
So When you feel like hope is gone, look inside you and be strong.
And you’ll finally see the truth, that a hero lies in you.
I’m Home!!! That is such an exhausting trip, but well worth it.
Sunday my Mom and I went to visit and stay the night with one of my
cousins. I got to play with her new puppy, and she is lucky I didn’t steal
him! He was so adorable.
Monday morning, we had to get up very early to catch our flight out of
Little Rock. We got checked in, went through security, and all that fun
stuff. The flight to Houston wasn’t bad. At our lay over in Houston we had
to switch terminals, which for me, involved wheel chairs, carts, trains, more
carts, and another wheelchair. Finally, we got to our gate and hopped on
the plane to head for Los Angeles.
When we got to L.A., a friend (the fellow NF2bie who I talked about be)
picked us up at the airport. It was kind of funny. I was just walking along,
following Mom. When I sat on a bench, I thought we were inside and I
asked if she saw a restroom anywhere near us. She told me that we were
outside. I was just like, “What? This is outside? There wasn’t even a
temperature difference. So, you mean I’m sitting outside? Right now?”
The friend picked us up and drove us to Satan Guest where we normally
stay. We got checked in there as well and went up to our room. We
grabbed a quick lunch and then my DB buddy J came to visit. I was so
happy to see him again!
My Braille Note, which the DBC needs to functions, quit working on me a
few weeks ago. I had to send it in for repair. I probably won’t have it back
for another months or so. The DBC is what I usually use to communicate
with other DB people and doctors. I was dreading not having it. My Mom
would have to fingerspell everything to me, and that takes forever.
But, my sweet, sweet buddy brought me HIS DBC to use. He had another
DBC that he was using from one of his other friends. So he and I were able
to talk more. He knows ASL, way more than I do, so communicating in
sign is difficult for me because I’m not sure what signs mean. I am always
stopping them and asking what that means, or just not understanding, or if I
think I understand, I repeat what they said just to make sure I got it right.
This, obviously, isn’t very good conversation skills. I prefer to have my
DBC conversations when possible so that there is no confusion and
guesswork.
J left his DBC for me to use with the doctors. I am SO grateful! He saved
the day! I took good care of his equipment while it was in my possession. I
talked with Dr. Friedman and all is looking well. I asked about the 5th
nerve tumor (which controls facial sensation) is doing, and he said it was
stable. Great! I LOVE that word! STABLE, STABLE, STABLE! He
asked to keep my MRI’s and review them at the radiology conference next
month. I said that would be no problem and he told me he’d be in touch.
Mom and I went to the cafeteria for lunch and then waited around until my
next appointment with Steve (the audiologist). When he came out in the
waiting room to get me, he said, “I have a surprise for you.” Hmmm.
Wonder what it could be.
I soon found out. Another patient was in there to meet me. She came a
long way, all the way from Mylacia, to visit L.A. I knew then.
Yvonne’s here? Yvonne Foong also has NF2. She was in L.A. for a
surgery. She was discharged last week and said she would be going home
at the end of this week. She’s low-vision and also deaf. She has the ABI
but can’t understand speech with it. She uses a white dry erase board to
communicate with people. There, the DBC was the life saver again. I
typed to her and she could read it on the phone (companion) screen, and
she could type to me and I read it in braille. I don’t believe she signs any,
so the DBC worked beautifully for us. We talked a bit and then Steve and
I got to work on my tune-up.
When my ABI was activated in March, I had 5 electrodes that gave me
sound. One of these electrodes also gave too much pain. It’s like a
shocking sensation. The stimulation of the electrodes gives sound, but
sometimes it gives that shocking as well. If the shocking is bearable, it’s ok.
Chances are, the brain will get used to it and that side effect will go away.
But if it’s too painful, it’s best to leave that electrode turned off. So, I had 4
electrodes that were turned on.
This time, I had about 8 electrodes that gave me sound. Some of them were
a bit too painful, so we left those off. I did, however, pick up a fifth
electrode. Now I have a new program with my f5 electrodes that are
turned on. I love the new program. There isn’t as much white noise and I
can hear more detail. Before, I could hear things that were happening, but
there was a lot of background noise that muffled it. Like a constant rumble
or static, and then only hear something when it got close or loud enough.
Example, I couldn’t hear footsteps. I would not tell when people were
walking up to me, or close to me. I only knew when someone was there
when they spoke. Now, I can hear people walking around. I hear
footsteps, especially if the persn are wearing clicky shoes like high heels or
cowboy boots. I hear other things moving around. And this morning,
something I’ve never heard with the ABI–THE COFFEE MAKER! I
was standing in the kitchen talking to Edward, and I kept wondering what
in the world that sound was. Then it started to make sense. It was a
dripping type sound. And then, you know when the coffee is almost done,
the coffee maker makes a sort of growling or gurgling noise? I heard that
and it clicked. Amazing, I haven’t heard that in such a long, long time!
Steve said that I was doing Excellent for only having the ABI a short
amount of time. I told him that I wear it from the time I wake up, until I go
to sleep. He said that is very good. The more I use it, the better I’ll get.
After the appointments were finished, we went back to our room and J
came back to pick up his DBC. I told him how very thankful I was for him
letting me borrow his DBC. I am very, very lucky to have a friend as nice
as him. He’s so helpful, supportive, and friendly. He and I visited a bit
more, and Yvonne came by to talk some more. J got to meet Yvonne and
talk with her too. I gave J a hug and promised to see him next time.
Wednesday morning rolled around and we caught a ride back to the
airport. I got a little bit of sleep on the flight from L.A. to Houston. Also,
the airlines have never served complimentary meals on any of the flights
I’ve been on. It’s usually just pretzels or cookies. The one out there served
cereal and a banana, and the one coming back served a chicken burrito and
a salad. That was nice.
When we got to Little Rock, the humidity was back. It was hot before we
even got off the plane. Let’s go back to L.A.! The weather was gorgeous
there! I’ll b e back soon though. I will get another tune-up in November or
December. I’ll be glad to go back to see the guys at HEI, see friends, and
enjoy their weather.
It is time for me to go back to Los Angeles and have my ABI tuned up. It should have been done in June, but the date kept having to be delayed.
It’ll be a fairly quick trip, but hopefully I’ll get to see a few people while I’m out there.
I can’t wait to see Steve and Dr. Friedman. I have improved so much since they last saw me. I am also improving with the ABI and I have the tune-up won’t screw me up for very long. I’ll keep my fingers crossed that my brain will adjust quickly, as always.
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!!!!
