Archive | March 5, 2013

Living with an invisible disease

I have something called Meniere’s disease. I was diagnosed in 1983. .’s_disease

My last year at CSUN I kept getting ear infections and colds and made frequent trips to the student health center and was finally got sent to the otolaryngologist. He did a bunch of tests including a particularly obnoxious one of filling my ears with water and spinning me around in the patient chair. This gave me nystagmus and made me motion sick and repaid his kindness by vomiting on his shoes. He also accused me of putting hot oil in my ears and I hadn’t. That home cure would never have occurred to me.

Anyway the diagnosis didn’t surprise me because my dad already had Meniere’s and was struggling with hearing aids which don’t work for Meniere’s except to annoy the crap out of you. With Meniere’s deafness you can’t tell background noise from foreground noise. Hearing aids make everything louder so all it does is hurt because things are loud. So Dad would take them out and we would yell.

Meniere’s makes you deaf eventually by killing the cilia in the cochlea. The key is not to let your ears fill up with fluid such as when you have a cold or allergy because this is what kills the cilia. I’ve been really good at not getting colds for several years now and taking benedryl at the first sign of fullness or when my sister says I’m talking too loud.

This cold had been a test of my will because my ears have been full the entire time and its making me more than a little nuts. Imagine some stuffed your ears with cotton and then slammed a bathing cap on your head and you would come close to how it feels. Not fun.

This weekend at the meeting I was having trouble sorting out voices. It gives me a headache to try and sort it out. I have gotten to the part where you can’t tell background from foreground. There is a huge industrial mower outside our building and even though it’s 10 floors down I can’t hear anything else around me. This would not be a good time for a chat with the boss.

Someday I will have to accept the fact that I will be completely deaf, not yet, thank heavens, but someday. I think the thing I hate the most is that I’m having trouble tuning my guitar. Can’t distinguish the tones well enough to suit me and while I do not have perfect pitch like my brother I used to have relative pitch. I was able to hear an out of tune piano on a DVD last night which did make me happy but it took a lot of listening before I figured out which note it was. I did everything I could at our camp reunion to keep from having to play my guitar because having to explain I can’t hear it or match my voice sometimes is embarrassing for someone who used to be glued to their guitar.

Having been born blind in one eye and partially sighted in my other the fact that I’m losing the sense I learned to use first is really hard. I depend on my hearing to know where and who people are.

I think my hearing is why I don’t judge people by what they look like but I do judge people on how they sound. I don’t care what colour people are or about physical beauty but if you sound mean or whiny or just not engaged I probably at the least won’t trust you and if it’s really bad not have anything to do with you if I can help it. So it comes down to, how do you use your voice and what is your vocal music?

Everyone has a certain sound or music. If you are a totally visual person you may never hear people’s music but I do. I can tell your attitude, your mood and a lot of your personality by how you sound. I can tell if I want to be your friend and judge just how much contact I want with you by your voice. I also tend to judge people by how you sound when you walk and any other thing you do that makes a noise. For the record I hate, loathe and despise people who snap their gum. One of the side effects of Meniere’s for some reason is extreme sensitivity to unpleasant noises. Rather ironic that something that will make you deaf makes you sensitive to bad noise but it’s true. And I hate gum snappers. When I was a kid it was throat clearers, but it can also be metal rakes on a sidewalk, radios that are too loud or playing just out of clear hearing range and conversations at a mumble level.

So now I’m doped up on benedryl and trying to concentrate, while waiting for the mower to go away and hoping no one asks me something important.