walking stick; apathy; pain;what people say, a recent personal story

[Guest guest]

Long before I joined in the group, before my illness had a name I was

bouncing off furniture and walls losing my balance, felt and looked drunk.

Had a broken blind from Ikea. the end was flexible and strong and the

right hight to be a walking stick. I hadn't wanted to use a cane because

I fall so unpredictably I had visions of impaling my throat on a cane. So

I took the end from the blind and wrapped it in black duct tape (love duct

tape), taped a scouring sponge over one end, taped the other end till it

was padded (not to damege the floor) and covered the ponge with a cotton

sock. It has served me for the last few years (can't take it outside, it

rains a lot in Vancouver). It's most redeeming characteristics is that it

is very light and flexible, hell, works for me.

My guess is that the apathy you see is that frequent stupour I feel when I

am overwhelmed (it doesn't take much). I'm fairly assertive, now I carry

sleep shades in my purse and when the gathering overwhelms I put it on and

metally spend a few moments on my favourite beach, and before I take the

shades off I imagine how people are looking at me and it cracks me up. I

don't spend time with strangers and everyone else knows that this is what

I'm doing. It also teaaches them how much is too much for me in a bit of a

comical way.

I'm with , pains medication are best reserved for desperate times, find

distrations (I like digital cable, sculpting, petting a cat or dog, my

aquarium), in fact I have surrounded myself with everything which makes me

laugh, gives comfort, stimulates good feelings, and those are different for

everyone. I used quite a bit of demerol while dancing (trying to keep on

working, when I should have had sugery), but doctors cut you off when they

think you might get addicted (I never felt a high, it just killed the

pain), it is effective, but continuous use wears your body out and we're

not doing so well to begin with.

All I need to hear from friends and family is the occasional

acknowledgement that what I am going through is difficult for me, but

mostly I hear how tough it is on them, or that they feel so helpless and

are trying to figure out what to do for me.

1. I know it is tough on them I am not an idot

2. I'd like everyone to stop trying to rescue me and instead of making me

a cause, reintate me as feeling human being

3. that whole it's better to look good than to feel good does not apply

here, people only see me at my best, but the pretence is for their benefit

and very wearing on me

4. Once in a while I'd like someone to quietly listen to me bitch, whine

and vent - put the platitudes in a journal for your own benfit, it's

nothing I don't already know - I need acceptance, why am I helping them

through their denial?

My sincere thanks for letting me bitch, whine and vent, it is invaluable.

Between you darlin's and my therapist my sanity should be quite safe.

My little anecdote:

My siter's sister-in-law was always little miss perfect, nothing out of

place always the right size. After my heart attack in 1993 I inexplicably

put on a lot of weight and had struggled to get it off. She always made

sly comments about my size at birthdays and other gatherings. Last year

she mentioned my sister had explained I had Shy-Drager's. Her comment to

me - " how lucky you got something that made you thin " . Well here comes the

twist, last week she had a stroke knocking out exactly the part of the

brain I have the most problems with, she lost her balance, speech,

autonomic functions are a mess, in other words she has everything I have,

overnight. Now, I don't wish this on anyone, ever, but as my daughter

remarked when I told her about this - never make fun at someone's

disabilities, tomorrow it could be you.

A little good news. An old colleague called (we were AIDS/drug rehab

counsellors at a medical clinic) they're moving offices. While I worked

there I painted two murals in the offices. Since they cannot move the

walls with them they'd like me to do a repeat at their new address. I'm

thrilled to do it and even more thrilled to in some way be hanging around

with my former colleagues, I have really missed them. I'd like to see the

murals extend my mortality.

Well, I'm going to pour myself and my son a large Vermouth, break a

glowstick and look forward not back. To all of you cheers!

aletta mes, vancouver, bc canada

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Site: http://wwwaletta.0catch.com