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.
by Sarah, on 11.16.09 @ 1:39 am
Sorry Holly.
I can’t imagine how tough it must be.. you’re a brave woman. Are you going to be able to start on Avastin?
by hollyalonzo, on 11.16.09 @ 8:48 am
I’m not sure if I will get it or not. I went to an oncologist and he wants a neurosurgeon and a neurologist both to follow me on it. I met with the neurosurgeon and he is again it. His reason being that they have never treated anyone with NF with that drug. I am willing to be their ginny pig so that just maybe I can save someone the trouble of going through this in the future. I have a hearing test and meet with the oncologist on Tuesday. I will meet with the neurologist later today. We will find out Tuesday if they’ll go for it anyway since the NS is against it and possibly the neurologist too. I don’t know. I will let everyone know what happens.
by Yvonne Foong, on 11.22.09 @ 7:01 am
Hi Holly,
Refering to what you say about people getting frustrated when you ask questions, that happened to me when I first became deaf. People looked impatient and were unable to convey messages to me in a way that allowed me to feel included. But over time, people got used to it and started being able t0 say just the right things. Even stramgers I met in public used to have trouble writing and communicating with me the right way. But now, three years after I became deaf, strangers on the streets that I had nmever met before are able to write to me the moment I ask them to and they instinctively know what information I need when I ask. So I believe we need to be at peace with ourselves and be comfortable with the way we are forst. Once I got used to being deaf and need to ask people fopr information, I must have calmed down and able to ask for help with more patience. This puts people at ease so that they can respond with confidence too.
But if the person needing help is frustrated herself, people will feel suffocated and not know how else in order to satisfy us.