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What mysteries about your disability have you resolved by looking back on your life?
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Name: Bill Niemi
E-mail address: stonears@yahoo.com
Date: 06 Apr 1999
Time: 04:43:00
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Meniere's disease. How many of you know what that is? How many of you know someone that has it? I do.
Meniere's is not a disease. It’s a disorder of the inner ear that causes frequent and unpredictable attacks of vertigo. It causes you to lose your hearing, gradually, in the affected ear or ears. You usually wouldn't know if someone has it. They look fine, perfectly able to function normally and hold a steady job. At least that’s what an unnamed probate court judge told me.
My former employers didn't think that way. "I'm sorry, but we never know when or how often you’re going to be sick," I was told.
At least that much is true. My hearing seemed to fluctuate in my left ear before going completely. That’s OK, I told myself. I still have a good one, and the meclizine helps with the dizziness, sometimes.
Now the right ear is fluctuating. Oh no, now what do I do? I communicate over the Internet now or by reading lips in person. I can't wait for video phones!
I almost got thrown in jail because I couldn't keep up with child support (the Veterans Administration took two years to finally approve my claim). People from other Meniere's support groups across the country say that Social Security has been denying claims because it’s not disabling enough. Tell that to our former employers.
Things got so bad that I started drinking and getting depressed. I then gave up! They had to revive me. Twice!
I've been sober 7 months now, and I'm accepting that I am unique. Not disabled. I just don't fit many molds. It’s still getting worse, there’s no cure, and I am still terrified of being completely deaf, not hearing my 2-week old daughter learn to talk, or worse, being totally dizzy 24/7 -- completely helpless but fully aware of it!
Does anyone remember the famous painter that cut off his ear? I bet you didn't know that he was suffering from Meniere's.
So now I have a purpose. While I still can, I need to make every human being aware that this does exist. That we still do look "fine." But we just cannot suffer in silence anymore. Awareness -- I think maybe that is a gift from a loving Creator.
Today I was diagnosed with cancer (deep breath). God bless what tomorrow
might bring -- please?
(See a May 29, 1999, update about Bill and his family.)
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