HollyAlonzo – Never Giving Up Hope

Thinking of my situation, you wonder what it is that can help me. I’ve been wondering the same thing. I know that the ABI will help me, when it comes to it. But what can help now?

Going out is incredibly frustrating. Imagine going to the doctor but not being able to understand what is being said. You didn’t have this problem when you scheduled the appointment, so you didn’t request an interpreter. Not to mention interpreters sign too fast. When a person can only fingerspell, then the interpreter doesn’t do much good.

I went to the doctor last Monday. I couldn’t understand him. I started crying in frustration. No one knew what to do. They didn’t know sign and I can’t just pick up a piece of paper and have them write. I have to have things in braille, and I don’t have access to that kind of portable technology that a sighted person can type and me read in braille.

I finally held out my hand and asked the nurse to write what she was asking me. She wrote small and fast like you would on a piece of paper. I told her that I couldn’t understand that. I needed her to go slow and really big. Finally I got the message that I needed to pay the co-pay.

This method is called Print on Palm (POP) but it’s incredibly tedious and I can’t always understand. I just recently started trying it, and I have gotten a number of things wrong. I haven’t had to read print in 9 years. Now I am trying to read what people write on me tactiley. It’s not an easy task, and I hope either I can figure something else out to make communicating with the public easier, or eventually get better at POP.

So What Can Help me? There are a few ideas that I’ve been tossing around. One of the ideas would involve a surgery to decompress the ear canal. The tumor would be given more room and even though it is very large right now, the tumor would let some pressure off of the hearing nerve and stop strangling it. This would possibly improve my speech recognition a bit, even if it was only for a short time. I am interested in quality of life, not how long it will last.

Another idea that I think will be worth looking into, is chemotherapy. As far as I know there are only 2 or 3 doctors in the U.S. that do chemo for NF2. The chemo will hopefully shrink, or at least stop, the tumors. There is a doctor in Boston that I want to go see. I am just checking with medicaid, trying to see how I can get this paid for.

With the things I am currently dealing with, anything should be tried to try and save or restore my hearing. If I had vision, it wouldn’t’ be as bad. But I don’t, and my hearing is all I have. I have no support where I currently live. I am having to figure out how to be deaf and blind all on my own. It is very hard, and if chemo could possibly help me, I need to try it.

If all of my attempts to keep my hearing fail, then the last hope will be the auditory brainstem implant. I just hope that I will be able to get it when the time comes.