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.
Last Tuesday I went for a swallow study. They have changed the test since I last had one in 2000.
Before, I only had to eat and drink while sitting between the technology so they could see my stomach. But this time, I had to drink some slightly thicker than normal liquid while standing. Then they had me lay on my side and drink. Finally, they had me lie flat on my back.
That last one posed some challenge. No matter how hard I tried, I kept choking. Well, it’s not really choking. It is what they call “aspirating”. When something goes down the wrong way, and you start coughing, you are aspirating.
They had me drink some water, since it is the t thinnest thing possible to drink. Again, I aspirated. They didn’t tell me either way how the test went. I would have to find out from my doctor when she received the report.
I left that appointment so discouraged. I knew from before that when you aspirate, you failed. Since I did ok while standing up, I had soft stuff to eat, like mashed potatoes and pudding.
I was handling soft foods well, and began trying to drink more. Everything was going well, so I didn’t see any harm in it. I knew I wasn’t aspirating as long as I was sitting straight up.
Yesterday we finally got the results of the swallow study. I passed! I just knew I had failed!
The only thing I can think of, is they changed the rules over the past ten years. Maybe they had me drink while lying flat to see if I was able to clear any fluid out of my lungs, if it went in. Since when I coughed I cleared it out, maybe that’s a good sign and means there is nothing to worry about. Either way, I passed!
Since this feeding tube is in my stomach, and not my nose, I have to have a gastrentologist remove it. We found out today that I have an appointment for that to happen Next Tuesday. One more we and I’ll be tube free! I can’t wait!
Now that I am using a braille display full-time, and nothing else, I am getting better at operating the PC on my own again.
With speech, it was no problem In fact, everyone came to me with computer problems because I could do almost everything on a computer that didn’t require vision. When the hearing started going, so did my computer skills.
I hated braille—mainly because I am so slow at it. But using it on a daily bases, I am getting just a tad faster.
Using a braille display on the PC is harder than speech, to me. Things are arranged a little differently and it takes a second or two to go back and forth from the keyboard to the display. It just takes longer, and well, we all know I’m not that patient.
I had Edwarrd do a lot of my tasks for me on the internet because Internet Explore was just too hard. But, I’m getting better!
I’ve been posting my own blogs and doing a few Google searches. Now I’m about to start working on changing a few things on the blog. I do not need the donations anymore, so I need to make people aware that I got what I needed, and not leave this old information up there. It’s also time to push my book a little harder.
I don’t need donations, but I do need funds to help pay for travel and lodging to and from L.A. since I’ll be going back several times within the next year. I will try my hardest to sell the rest of the books I have, and use that money to do this
So things are going well. I am recovering nicely, and I’m adjusting to this deafblindness well. I am improving on my braille skills, and not freaking out quite as much over the silence. I still get a wave of anxiety sometimes, but it’s getting better. From here, I can only move forward.
Music is everywhere in my family. Seems that everyone either loves to sing and/or play music.
My niece is one who loves to sing, just like her Aunt Holly. As she got older, she got even better at it.
She decided to try out for American Idol this year. She made it to Hollywood.
Last night they showed her at Hollywood. She sang “I Hope You Dance” by Leann Womack (probably misspelled that). I wish I could have heard her. I’always loved hearing her sing. People say she did really good.
I am keeping my fingers crossed and praying that she goes far in this. This is something she loves to do and really wants out of life. I’m so proud of her for trying to follow her dreams. Way to go, Hope. Go far and pray you make it to the top.
I’m finally home! They let me out of the hospital after 16 days.
This surgery was a huge success, even if there were complications. I feel so blessed. I have an excellent team of surgeons operating on me.
There are several truly amazing things about this whole experience that definitely show me that God was at work here. Right now the one I’m thinking about is the surgeons saving my face.
I had a 5cm tumor. That is extremely large for an acoustic neuroma. It was life-threatening. It was causing me to choke on food and drinks, have no balance, falling all of the time, and making me space out. The spacey spells I was having were very scary. It would feel like I had been injected with the strongest drug out there, and I would feel like I was about to pass out. I couldn’t think, talk, focus, anything.
Now, the spacey spells are gone. I can walk using a walker, I can stand in place and sit on the side of the bed without swaying like a drunk, and I don’t lose focus anymore. I do have headaches off and on, but that is from the surgery. They aren’t near as bad as they were.
So I am home and recovering nicely. I still have a trech and a feeding tube. I am going to have my PCP get an appointment to take the trach out, I think an ENT has to do it, and order a swallow study to see if things are still going to my lungs. I think everything is fine. I know the trach can be taken out. Everyone there is safe now.
We flew home Saturday. Little Rock was very cold and the streets were slick with snow and ice. Since it was late in the evening, we had to get a hotel room for the night and try to drive home the next morning.
The long drive was even longer. My Dad had to drive very slow because the roads were so bad. I’m just glad we finally made it home safely.
We got home Sunday afternoon and as soon as we pulled into the driveway my aunt, who was watching Isaiah for me, opened my door and put him on my lap.
I gave Isaiah the world’s hugest hug. I missed him so much. My family missed him too, but at least they could call and talk to him on the phone. I had no contact at all and I would get so sad and lay in my hospital bed and cry because I just wanted to hold my baby. He signed, “I love you Momma.” Oh what precious words.
Hearing is completely gone now. It’s scary not knowing who or what is around me, if anything. At home it’s not so bad, but in the airport I nearly had a few anxiety attacks. I didn’t know if danger was around, afraid someone would try to attack or abduct me. Yes I know, I’m crazy but I am a chicken when it comes to crime. If it can happen to other people, it could happen to me as well.
It’s also very lonely and boring not being able to hear a thing when you are totally blind. There’s nothing to do to occupy your time. The only thing you have is touch. In L.A. I had two options. Talk to my parents or Edward, which can’t be done every second of the day, or read a book. I had my PAC Mate (braille note taker) and I have a digital book on it. I read it with the refreshable braille display on the note taker. Doing those two things, and praying a whole bunch, I got through those rough days in the hospital.
I want to thank everybody for their prayers, good vibes, encouragement, and support. It really helped and I could not have gotten through this without all of it. Thank you so much. I know God is watching over me. He was in the surgery and he still is here at home. Everything will be fine now, and the ABI will be a huge success because God isn’t finished with me. There is a reason I received that huge donation and was able to get the device. He wouldn’t have made that happen if it wasn’t going to work well for me. It is a miracle, and I really do feel so blessed.
Hello everyone. You must have thought this was going to be the last update I was going to put in the blog. Well you got it wrong. It’s time for a new one. Our son Isaiah was at his mother and father-in-law’s house today (that’s my mother and father-in-law’s house–he was at his grandparents house today). Holly asked me to go over there today, and asked them not to fix any supper tonight. She said she wanted to make supper herself tonight. Oh she definitely has done that and I mean done that in a good way. She was able to walk around the entire kitchen holding on to either the counter or stovetop–not the hot ones mind you, but at least the ones that she knew where not hot and was able to hold onto. The funniest thing about it was that after I got done putting the hot oven gloves away after we took the chicken out of the oven, I went back to the stove, to see if she was still there. I figured she would still be standing there waiting on the chicken to get done, but instead she wiped completely from the kitchen on the way back to her desk. Just completely away!! Anyway, I thought that was pretty interesting. I thought maybe you guys might want to know a little bit of these interesting facts.
Another year has passed. 2009 had it’s shares of ups and downs.
Throughout the year I lost a lot due to these tumors associated with NF2. I’m not sure if any of my abilities such as my balance and coordination will ever come back. But, I hope so.
I did meet my goal for 2009 of losing 50 pounds. My diet isn’t for everyone, but it works for me when nothing else has. Or maybe it’s all a matter of self-control. You have to be able to resist the food you have come to love and that everyone around you is still eating and offering you.
This year I have two goals. One is to read t he entire Bible is braille. This will probably take a year in itself. Also, the other goal is to stop biting my finger nails. This may sound easy. Just don’t do it. But, to me, it’s not that simple. I am going to try really hard to force myself to stop though.
It’s a new day. It’s a new year. I pray that 2010 is better to me than 2009 was, and that each and every one of you have a fantastic year as well.
Hello everybody. It’s me again Hollys husband Edward. Well Holly got her brand-new one cup coffee maker today. I was going to give it your on her birthday. but I decided she could go ahead and open early, and she will be going to Los Angeles, California for surgery this month. She said today, after she got it, “I’m freezing” I said, make some coffee. She said okay, I guess I should try out the new coffee maker, to see if I like it. I said, okay that weekend. I’ll be able to watch you, and make sure you do it. Okay, without any accidents. So, she went over to the sink, and made the coffee just fine. After she made it, she put a little makeup that was provided, and then took it in her wheelchair from the sink, back to her desk, which is in the living room. She did it. I might add, with no mishaps. Good job Holly. I know it may not seem like much, and that making coffee is a normal occurrence for most of us in our everyday lives, the someone that has takes 30 issues with her hands, and is in a wheelchair, totally different lines, it makes it very tough to do things that we normally take for granted. I just wanted to write in and say all that, I’m sure Hollywood right and then let you guys know some of the same material. Everyone take care.
Hello everyone this is Holly’s husband, Edward Alonzo. I know it has been a long time since you guys have heard from me. I don’t ride in this very often, unless Holly wants me to.
Sometimes, I feel like I should write more, at least for Hollys sake.
You probably wouldn’t believe this, but I am actually posting this from my iPhone.
I am using a dictation software from Dragon NaturallySpeaking it’s actually from Nuance Communications.
This software, enables you to dictate by voice, into the iPhone, instead of typing on its tiny keyboard. Well, I just wanted to test this out, and see if I can get it to post correctly. Hope this works.
