My personal thoughts about life with a disability and all other things I consider important in my life.

Friday, August 18, 2006

What I lost

Most disabilities mean the loss of some freedom, some abilities. Often, these are replaced by an enhancement of other abilities. It's just the body's way of compensating for the loss. Also, when there is a loss of ability, there is generally a second half of the body that can help assist with the bilateral side of loss. You lose an arm, a leg, an eye, a kidney, a lung. All of these have a second half - they are one of a pair that allows you some form of maintained ability - albeit limited.

Vestibular systems aren't like that. If you lose half, you basically have lost it all. It's both mechanically and electrically driven. If the electrical system (nerves) get shorted out like mine, it doesn't matter if the mechanical (inner ear fluids, crystals, etc.) is working perfectly. Shorted wires will never transmit the proper signals no matter how much it tries, and as in my case, the doctors will tell you "either your brain will rewire it or it won't". Sweet, huh?

So, you have signals from your eyes and feet that are working fine but are in complete conflict with the nerves in your ear. Hence, the dizziness, imbalance, and outright vertigo.

Because of that, any signals you get from your feet - say, from walking - will make you dizzy. Any signals from your eyes - say, from reading - will make you dizzy.

For that reason, I have lost just about everything.

Not only have I lost my home, my job, my car, my savings, my credit rating and my social life, I have lost my ability to read much, write much, drive, walk any distance, use any type of power tools, talk on the phone, be in crowds, watch action movies (like Runaway Bride) and work for more than 20 minutes at a time, for no more than 4 hours in a day with a 2 hour nap in the middle. Even if I did get enough money to have my own place, most days I can't cook, most weeks I can't do my own laundry, and the general upkeep of even the simplest construction project lands me on the couch for a couple of days.

Drugs help (as do prescription meds) - just kidding. Meclizine - Antivert, helps, but only masks the vestibular system. It doesn't fix anything. So, if you take it too often, you end up worse than before you took it. They can give valium, but I'm not into addictive meds, thank you very much.

So, life is give and take. I can go for a walk, but only if I'm willing to spend more time than usual napping. Ditto for reading, writing, talking on the phone, blah blah blah. I can drive a total of about a mile a day. That's it. I can ride in the car, but again, more than 20 minutes, and I'm toast for a day.

My life is all about trades.

A humorous example of my social life:

A friend who's in construction was putting a new roof on my parents' house. I asked him if I could bake anything for him (I'm The Muffin Lady to those in the know). He told me I didn't have to do that. I told him that he and the two other guys were the first men not related to me and under the age of 70 that I had seen in a year. The least I could do is make some muffins.

He almost fell off the roof laughing. But it was true! THAT is my social life.


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