Technology is great, without it we wouldn’t be able to do half of what we’ve achieved lately. But without it, we are stranded.
We come to rely on technology for everything. I myself use a lot of assistive technology just to make it possible for me to live some what independently.
In order for me to use my computer, I was using a braille display. It was a Focus 40 and I liked it a lot. I got to where I was using it a long with the speech of Jaws for clarification since I am such a slow braille reader.
Now, I am at the point where I can not understand Jaws at all, not even a little. I had to rely on the braille, which isn’t great for me. I began to dread the PC, when before it was one of the things I enjoyed. But, not anymore. Maybe I just don’t have the patients for it. What I do now is read. It might take me forever, but it is something that I am still able to enjoy.
A whole new life can be found in a book. When reading, I’m normal again. So, I don’t care if it takes me forever. I’ll get done when I get done. When I finish this book, I’ll move on to another one because I get bored without a book to pick up and read on occasionally.
I had my husband hook up another braille display for me to use until I can get my Focus fixed. This is a tiny display, but it works. It’s annoying to only be able to read a word or two at a time, but something is better than nothing.
I’ve been MIA on the blog because for a while, I had no way of using the PC. I had my husband check my e-mail and see if there was anything important. When there was, he would sign to me and then I would respond or delete.
Since I’ve been MIA on here so long, I haven’t told you all how the Harvest Festival went.
It was very cold in the morning and late in the evening. I took my book along with me, but I wasn’t able to read it. For some reason it got out of the place and I didn’t have Edward there to fix it. I did not know how to work this. It wasn’t a book in the conventional sort, but a braille note taker with a book loaded in it.
This is my preferred way. I can read books as in volumes, but with electronic braille I don’t have to keep my place and it is easier for me to concentrate on what I am reading.
Because I had no book. I was very bored. I can not see a single thing, or hear anything unless it is right near by and said very loudly. Even then, I don’t know what the sound is. Yes, without touch I am isolated. I have no idea that anything is around me unless someone tells me, but I soon forget because I don’t see or hear it to remind me.
My Mom was there with me, and I would ask her if there were people around or what was happening. It was entertaining for her and others, there were lots of people at the event and constant music on the stage for them to listen to. But, not a lot of interaction with me at my table.
My mom and I were able to collect $260 in book sales and donations that day. It is not a lot, but it is $260 that I didn’t have before.
I have to think of other events to try to set up at, and other ideas for fundraising. Right now, I am at a loss. Places that I try to go for either turn me down or want a fee for me to be there.
Fundraising is not going well for me compared to others. But, maybe someday I’ll catch a break and be able to raise all the money I need for medical expenses.
This coming Saturday October 24, I will be doing another book signing
I will have a table set up at the Harvest Festival in Corning, AR.
The Harvest Festival is an all day event, but I will be there from 9 A.M until 6 P.M
I have books that can be bought from me when I sign it, or if you already have a copy of my book and would like it sign, bring it up to me and I’ll gladly autograph it.
If you can make it to this Fest, and get a signed copy of my book, I would be so happy to see you.
Come on out and brighten my day by showing your support!
For the past Decade I Have had tinnitus.
Tinnitus is ringing/roaring in the ears, or any other noise your brain decides to make up. Usually it happens most often in people with a hearing loss.
When I was 12-years-old, I didn’t know how to describe to people the noise I was hearing, but it annoyed me quite a bit.
When I was diagnosed with NF2 a doctor told me what that noise was and how there was nothing to do for it.
I thought, “What? I have to live with this racket?” He told me that I would learn to ignore it.
I did. I hardly ever heard the noise unless someone brought my mind back to it and then the noise started in. Funny how that works.
Lately, I have been dealing with the noise every day. Not only is it in my completely deaf ear, but when I started losing hearing in the other ear as well…it started getting Tinnitus too.
The reason it is driving me so crazy is because it is two diferent noises. I have a spaceship in my right ear that won’t go away, and fans, motor, phones, babies crying, people mumbling in my left ear. All of this noise is tinnitus. Not a single thing is real.
The baby crying sounds so real. I used to get up at least 50 times during Isaiah’s naptime and go check on him. I never knew if I really kind of heard him or if it was my brain playing tricks on me.
Whenever he moved into a toddler bed, that was a relief. I knew that if he woke up and wanted out, he would just get out of bed and come to me in thE living room.
The brain is so odd. You would think they could do something about this noise. The more hearing I am losing, the worse the tinnitus gets. Sometimes it’s so loud I feel like my head is going to vibrate wide open.
But, the medical science doesn’t know how to fix this problem yet. I think they have been working on it. But no luck. For now, we people with tinnitus just have to deal with it.
Just when I get used to the way things are with my hearing, it changes.
It started out just a little muffled. It was even still on the normal range. I thought it was bad then. Little did I know…
Then, around last winter it dropped to a moderate hearing loss. I still had a relatively high percentage of speech recognition.
In spring of this year, it dropped to a moderate to severe hearing loss and my speech recognition went from somewhere in the 80’s down to the 30’s.
I thought this was as bad as it could get. Being totally blind, I rely on my hearing so much, and I could hardly understand anyone.
Well, now I’m finding out. It can get worse, and it has. I have no had a hearing test lately to see what the levels are, but I know that it has gotten much worse.
I used to be able to hear Edward talking from across the room. I didn’t know what he was saying, but I knew that he was saying something.
Now I don’t know if he is talking unless he yells very loudly, but I still don’t know what he is saying. Isaiah is about the only one I can still hear, because his voice is very high and with my hearing loss, I keep the higher tones the longest.
But, I can’t understand what Isaiah is saying to me most of the time, unless he signs or acts out what he is saying. It’s very frustrating to not even be able to understand what my child is saying.
I can not understand speech often at all. People have to fingerspell into myahnd for me to know what they are saying or asking.
I would almost be willing to bet that I would have better hearing with the ABI than I do right now. The problem is, getting an ABI.
I have to raise the needed funds for me to get this surgery. It’s my only option now. I don’t have enough hearing to hang on to anymore.
I still need $22,305.00 before they will even schedule the surgery.
I am not sure what else to do to try to raise the money. It’s hard to raise funds whenever people aren’t willing to help.
I can not afford all of that, and I am limited in what I can do. I am too disabled to work three jobs to save up the money. I need people’s help. Without their help, I will be completely and totally deaf and blind.
I would hope that this is something people would not want to see happen to me. After all, if they were faced with this challenge, and no other option, wouldn’t they want help?
I know that there isn’t much hearing left to lose. The question is, how long will it last? Or will it plunge me into a completely deaf world over night when I still am mm nowhere near close to raising the funds for the ABI? I can just pray that doesn’t happen to me until I am prepared to have the surgery needed.
There are some things in life we can control, and others that we can not no matter how hard we try.
My life has been turned upside down by NF2. First from losing my sight. I adjusted to being blind and still tried to lead a normal life.
Now I have lost my hearing as well. This frightens me more than I can say. I am fairly certain it frightens me so much because of the unknown.
We all fear the unknown. I don’t know how to be completely deaf and blind. Can I do it?
That’s the scary part. If you ask anyone what they would do if they lost their vision, they would say that they would be scared and not know how to go on.
I know that I can get through this, I am just not sure how at the moment. Will I just adjust like I did with my vision? Or will I have to relearn things?
I know that this hearing loss is something that I can not change, so I am trying to figure things out right now so that when I become fully deaf blind, it won’t be such a shock to the system.
Acceptance finally came to me one night while I was on Facebook. My
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Aunt mentioned something about accepting it. She’s right. I have to ask God to grant me the strength to accept what I can not change.
Once I accept it completely, I’ll be able to move on, but not until then.
