I've been using this blog to share the ups and downs of my quest for independent as a person who is deaf-blind. I experience success and failure, triumph and defeat.... it's a never ending struggle. The bad days can be devastating. The good days make life worth it all.
I'm not the only person out there who is "Deaf-Blind and Determined." I would like you to meet one of the others. Holly Alonzo is my original Guest Blogger. She told about a bad fall in "Why can't People Put Things Back?"
Holly and I have similar life stories. Although for different reasons, we both found ourselves suddenly thrown into the dark silence of deaf-blindness. Alone and scared, we had to find our way out and learn to live again. It's an experience I would never wish on another person.
There is a big different between me and Holly, however. My loss occurred eight years ago. I'm over the worst. I've found ways to cope with what has happened. I've accepted my fate in life, and have tried to move on. It's not always easy. Yet time has given me the strength to fight back and make a new life for myself.
Holly, on the other hand, is currently still hurdling down that long and endless pit. She is not just deaf-blind. She is BECOMING totally deaf-blind. That is probably the scariest place of all.
Here is a little background information to understand Holly's plight. Holly is 21 years old and has Neurofibromatosis type 2 (NF2). This disease causes tumors to grow on the nervous system. The majority of the tumors show up in the brain and spine, but occasionally they pop up in other places as well. Holly is now totally blind, completely deaf in one ear, and rapidly losing her hearing in the other ear. She also has balance problems and general nerve damage to certain areas of her body.
In January, Holly underwent surgery to remove a tumor on one side of her brain and insert an Auditory Brainstem Implant (ABI). Due to auditory nerve damage, a person with NF2 can not benefit from a Cochlear Implant. The ABI is a more invasive and experimental approach to restoring some hearing. Unfortunately, the damage from the tumor was too severe and Holly was unable to receive the ABI.
Below is a moving story from Holly that represents the pain and fears experienced by someone who is becoming deaf-blind.
I knew this wasn't going to be an easy road, but it's getting harder and harder every day. I am honestly terrified now.
My hearing is worse, yet again. I don't know what to do anymore. I have no friends, family, no one around to help me adjust.
I can't even find help from the state services to get sign language classes for me and my family. I am having to figure out methods of communication on my own.
I have NF2. I need an MRI every six months. I haven't had a brain MRI for over a year now. Doctors won't listen to me when I tell them that I need a brain MRI to find out what is going on in there. I don't have another chance for a brain MRI until September, but the MRI isn't even scheduled yet.
The doctors won't listen to me. I went to a neurologist here where I live. He ordered a spine MRI but wouldn't do a brain. Said he was going to let McElvee handle that part. I have several more brain tumors than just the schwannoma, so I am irritated with the response.
I had the spine MRI and he said I needed to see a neurosurgeon. He refers me to one and I never heard from them. Finally I called to find out what the problem was and why I haven't heard from them. They lost my referral papers. The nurse called again a couple of days later and said the the neurosurgeon here wanted to refer me to another neurosurgeon.
My legs are getting weaker, and these people are just procrastinating. Putting me off and giving things time to get worse.
I do not know if there is a tumor in my spine that needs to come out or what. No one will give me any answers. I am going down hill and no one seems to care.
Not only for my hearing, but also the facial and tongue numbness as well is the reason I need an MRI of the brain. No one seems to care about this issue I am having either. I am being toyed with and I am not too happy about it.
I emailed Dr. Friedman today. Asking him what I should do if I can't get any doctors to take my problems seriously. Also I asked him about the right side causing too much damage to the brainstem and that ABI couldn't be put in. The left side is my last chance and does he think I should hold on to hearing as long as possible and risk having the tumor destroy my chances for an ABI again, or get it now while not too much damage is done?
Ya know what he said? I suggest talking to Dr. McElveen. Now I feel really alone that no one is caring about me. In my email I told him already of Dr. McElveen's thoughts and wouldn't' even order an MRI.
I am so depressed now. I don't know if I can do this if not even the doctors are willing to talk to me.
Visit Holly's web site to read more of here story: