hidden disabilities - that slippery slope

January 27, 2004

" Fortunately " because of my back and unstable pelvis, it only takes a few steps

and I start walking like a lame duck. Here, we fight to do our best and put on a

reasonable face for the world and suck it up and then someone expects us to look

a certain way. I had one colleague who was a paraplegic and he actually said he

thought I felt worse than he did because at least he couldn't feel his legs!

Ugh! He did point out that people can anticipate his needs based on his

appearance yet on one level it bugs him because he tried so hard to be

independent. Fortunately I can whip out my unstable hand bones oif someone asks

and politely tell them this is what my back, etc are like and that some people

could garner an for acting like " normal people " for the brief time they

are out in public.

When one insurance company bought out the current one, I was terrified what they

might do and when I talked to the new supervisor, i explained what was wrong

with me and that I had had problems with doctors not " getting it " . I explained

what daily life was like and how when I appeared outside or tried to do

something, it wasn't a spontaneous thing. MAybe I will force myself to shovel

the driveway, sometimes with tears running down my face, because I can't afford

to get someone to help me and hardly anyone will do something to just be a nice

person (like I so often did - be nice if what you give away came back to you

when you need it most...). Last time it took me six trips outside just to clear

what the plow put in. ANyway, I said if they wanted to send someone to watch me

they could simply call and the person could move in for a few days and see

reality - all of it. I would rather someone see reality than a snipet of me

pushing myself because I have no choice, then paying for it after the fact. And

that is exactly what is seen if you park your car and walk a short distance. I

know a few people have been shocked when I have politely explained the problem.

Then I point out that people do abuse the spots and not to let one mistake

disuade them from trying to do the right thing. One lady actually cried when I

politely told her and showed her the problem. She felt terrible she had

questioned me. She even helped me with my groceries! It doesn't help if you

aren't a senior either some times. People expect elderly or someone with a

visible aid.

I think the only thing to do is to surround yourself by people who try and the

rest - push them to the background.

Joyce

January 28, 2004

I think you are right, Joyce.

Sometimes I feel I need to " pick my battles " because I can't fight all of them

at once. Besides I think some people just aren't gonna get it anyway (the old

head against the brick wall thing). One time when I parked in the handicapped

place, a few cars over was an elderly man. Boy, did he stare at me as if to say

- I bet that handicapped tag isn't yours, it belongs to someone in your family.

He stared at me all the way in the store!!!! I felt like going over to him and

explaining that I have this syndrome call VEDS and, you know, I would really

love to live long enough to retire and travel (and not work - yeah, yeah), but

chances are I probably won't - so keep your eyeballs in your head and thank your

lucky stars you're heathly enough to stay mobile.

Oh well --------

All the best, Patti

hidden disabilities - that slippery slope

It doesn't help if you aren't a senior either some times. People expect

elderly or someone with a visible aid.

I think the only thing to do is to surround yourself by people who try and the

rest - push them to the background.

Joyce

January 28, 2004