This is something I struggle with, since technically I am not deaf…not completely. Although, what little hearing I do have is not usable at all.
There seems to be some misunderstanding in the two situations of being deaf-sight and deaf-blind. I will try to clarify what I can.
Being deaf-sighted is a little harder on a person, but still manageable. Being deaf-blind totally isolates a person.
I know the legal definition of “blind” includes those who have low vision. But, in my opinion, if you can see well enough to read printed you are not blind.
Myself and my husband, we are blind. Pitch black. Nothing. No print, not our son, not anything. This is why a totally blind person relies on their hearing so much. It is what they have.
A normal person with vision would not understand the things that a blind person relying on their hear, not their eyes, will figure out. For instance, traffic.
The way a blind person knows it is ok to cross the street is either to listen for an “all clear” when it’s totally silent, or listen for the parallel traffic to go. When they go, you do too. You do wait a few seconds to make sure they are not turning in front of you, but then once you hear them go straight, you cross the street safely.
All of a sudden, a blind person who has come to rely on hearing, loses it. No phone conversations, no music, no audio books, no concerts, no talking during dinner, silence. The only time deaf-blind knows anything is when someone touches them and tells them.
Then comes the communication issues. Deaf-sighted can carry around a small notepad, or notebook and pen, which people can write messages to them to let them know what they are saying. But a deaf-blind person can not do this because they have no way of reading the message that was written.
If the deaf-blind person is able to read “print-on-palm” that is one method. But you would be surprised at how many people will walk off without answering you, or don’t want to take the time to do it. This method is simple where the deaf-blind person hold their hand out flat, and the other person uses their finger as a pencil and draws the letter in the deaf-blind person’s palm. Some people write too small. Some people write too fast. Sometimes the deaf-blind person simple can’t grasp the shape of the print letter.
Even though I know print, and can write just fine, I have a lot of trouble with print on palm. It takes me a long time to understand it. So, it is not a reliable form of communication for me, and many others.
Not a lot of the general public can sign, even finger spell. There is what they call the manual alphabet, but you would have to explain to the person how to do it, and there again. They don’t want to take the time to learn it, or even both with telling you what they started to in the first place. What’s a deaf-blind person to do for communication?
Well, Human Ware an assistive technology company, has developed a deaf blind communicator. This allows TTY access, Face-to-face communication, and SMS text messaging. It opens up a whole world to the deaf-blind person. They aren’t so isolated anymore. They feel just a little normal.
With the face-to-face communication, you hand a cell phone with a qwerty keypad to the other person. They type their message and it is then send to your device which you can then read in braille. The problem with technology, especially this one, is that many def-blind people do not have access to it. It is very expensive.
Unless the person can get funding for the technology, or can afford it on their own, they do not get the luxury of “the easy” way.
So, see? There’s a major difference here. Being just blind can manage. Being just deaf can manage. It’s when you have not only one, but t two sensory losses that makes it nearly impossible to manage.
I knew my hearing was bad, but wow! I didn’t know it was this bad.
On Tuesday, I had a hearing test done. The last hearing test I had was in North Carolina back in the spring.
Then, my hearing was moderate to severe with a 32% speech recognition at 75DB. This was a headache. I couldn’t really understand people. My audiologist told me just to ask people to repeat or rephrase. It worked for the most part.
Now, I have to have everyone finger spell to me or try to write into my palm which I am not good at. Before it was some time’s, but now That is the only way I know what is being said.
I hear them, usually, I just don’t know what was said. Well, the hearing test on Tuesday showed that I have Moderate to profound hearing with absolutely no speech recognition even at the loudest level of 300DB.
Most people, normal people, hear all words perfectly at 30 to 40SB. To think, my hearing used to be perfect.
Even if there is a drug to shrink my tumor, I doubt I will ever get that perfect hearing back. My only chance to hear anything, even more than I do now, is through the ABI.
I had an MRI done a couple of weeks ago, and I had a copy of that sent to Dr. Friedman. I am waiting to hear his opinion on it. Does t he t tumor need to come out now? The doctors at UAMS in Little Rock certainly think so.
Everywhere I turn to try to do events, speaking, book signings, Edward’s playing music, everything is going to cost a lot of money. No places will let us have a discount or donate a few hours to let us try to raise funds. The mall, where I wanted to set up a table, wants to charge $600 a day. I explained the situation and they didn’t care.
It seems all people want is money. I probably wouldn’t even make $600 that day, so I would be losing money. What else can I do? I am not trying to get rich or make money by scamming people. I need surgery, and if it wasn’t for this I would not be trying to get paid off my book or story. I don’t know where to turn to now. I just hope in the very near future someone out there will give me a break.
Losing my vision 9 years ago was relatively easy. At least, compared to this…
People could talk to me, and encourage me and find ways for me still to enjoy the activities I enjoyed previously.
But now, it’s a whole new world. People get irritated when I ask questions. If they would stop and think about it, I don’t know unless I ask. People are not forthcoming with the type of information that they take for granted.
I might ask my husband to do something, but I am going to tell him step by step what to do to find the correct thing. What does he do? Assumes he knows what to do or what I want. This is a huge deal lately. Everyone assumes they know what I want and no one does. My mind is too complex. Especially now that all I have is time to think and be creative.
Family members around me say that it is hard for them, and it might be. It is harder for me though. Until people go an entire week in silence and darkness with absolutely nothing to do, they will never be able to imagine it.
I’ve said it before, I do not live in a huge city. I do not have SSP services available to me. I can’t even get classes to learn sign language. So I am right back to square one. No one can communicate with me and that seems to be the major issue.
There is the deaf blind communicator from Human Ware which would make my life so much easier. Problem is, it costs around $8,000 and I don’t have that kind of money or access to funding for that.
Howe can I deal with this hearing loss and being Deaf-Blind if those around me don’t deal with it and help me out? I need to know what is going on. Do not assume you know what I want. That will leave me with finished product that I am not completely happy with, or an outcome.
My mind still works. I want to make all the decisions I used to, people just have to let me know what is going on around me, or what they are doing.
I may have to go to the Helen Keller National Center to learn everything I need to about being DB, and deal with it. I would rather avoid that though. It’s an extended stay, could be as long as a year, and I don’t want to leave Isaiah and Edward that long. I’ll try to tough it out here at home, on my own.
Earlier this year, in January, I had brain surgery.
When any part of you is operated on, of course, they shave that area so nothing gets inside the incision and in the case of long hair, so they can get to the place where they need to make an incision.
There are many things about surgery that are not pleasant, but for me, the shaving of the hair is the worst part.
I love my hair. I’m just thankful they only shave off what they need to and that it can usually easily be covered. If they shaved my entire head…well I don’t eve want to think about that.
My hair was down to around my lower back or a bit longer. The part that was shaved during surgery had grown out to my shoulders.
I hated having two lengths of hair. I would put it up my hair not even thinking about it. The majority of it would go into a pony tail or twist, but t hat piece that was shorter would always fall out.
I struggled with the decision to cut my hair. I love my long hair but I don’t like two different lengths. Should I really cut it?
Well I finally did. Lucky for me, my mom is excellent at cutting hair. No need to go to a beauty shop when she’s around. I told her how to do it, and she did it a few minutes later. I am glad it was quick and there was no time for me to change my mind.
Now my hair is all the same length and it’s very short. It was cut from a little past my lower back, up to right above my shoulders.
It’s very short now. It could be shorter, but this is short enough. It’s so short, it feels like part of me is gone. In the shower I go to wash my long hair and there is nothing there.
I want long hair again. There is so much to do with it. You can fix long hair in so many different ways. I know that eventually, it will grow out and I will have my long hair back. I just have to be patient until then and make do with what I have.
Now that my hearing is almost gone completely, I can not hear myself when I speak.
I think I am talking normal. In reality I am speaking as fast as my thoughts, and the mind works a lot faster than the voice does.
When I speak to anyone, if there is background noise, they constantly ask what I said. This is so very frustrating.
Since I can’t hear myself speaking anymore, I am always talking too soft or too loud. Usually it is too soft and people have to get very close to me to hear what I say.
I still have temporary facial paralysis, and numbness of the tongue. Both of these things make it more difficult for me to form the words clearly. I have to slow down and make an effort to say whatever I am saying clearly and loud enough. I don’t do this automatically. I’ll say something in a way that feels natural to me, and people ask me, “what?”
No one seems to care or wonder why the numbness on the right side of my face has spread to the right side of my tongue and I can’t really feel it at all when I eat or talk which makes it hard. Is it a nerve problem? I don’t know. None of my doctors think so because there is no tumor on that side, but yet they are not trying to find the cause.
With the ABI, I wonder if you can hear yourself speak. If so, is that the reason people I’ve talked to with it sounded so clear? It really bothers me that no one seems to be able to understand me if there is noise going on around us. It almost makes me not want to talk at all. But I have to for Isaiah’s sake. He needs to vocabulary. I do sign to him when I speak though, so he will learn both. Even if one day I can understand speech again, I want Isaiah to always sign so it comes natural to him and he’ll be able to help somebody in the future.
