Posted by: Shira Danin | October 23, 2009

Handicapped? Crippled? …or, maybe not?

With all the balance I wrote of regarding physical activity, I find myself wondering.

I wonder how I am viewed or how I want to present my abilities (or lack thereof) in public.

Public for me is any place where I interact with people I don’t know, and they don’t know me or my “good” friend, Fibro.

On the one hand, dealing with any activity (walking, standing, and sitting) outside the house, I sometimes need help or “discounts”, so I can be “just like everyone”.

On the other hand, it’s mentally hard for me to be “handicapped”, 26 years old and acting like I’m 70.

It’s hard that I have to sit on a heating electric pillow just to make it through a lesson in the Uni.

It’s hard that I have to ask friends, who came to visit me at home, to help with dishes, cleaning up, turning on the fan, or getting drinks from the kitchen…

It’s hard that I pass on visiting friends and family from out of town because by the time I get there, I’m so crabby and aching from driving that it’s not fun anymore.

It’s just hard and doesn’t make sense.

This weekend I was supposed to be participating in a workshop my bro and sis wanted to pay for as a birthday present (for my birthday two months from now).

“The complete process to creating the life you want for yourselves”- the essence of the workshop in one sentence.

The idea of the workshop is nice and the thought behind the present is what really counts.

It’s a three day workshop that started yesterday (Thursday).

On Wednesday I gave up my Fibrogym class and another meeting so I could go to Tomer in the center. That way it was easier to get to the workshop at 8:30 in the morning with traffic making it hard.

The reason I had to pass on the other plans was that I had already run out of energy for that day around noon. I was washed with very strong pain all over. I knew if I had done anything beyond driving I would just crash and fall asleep.

So I got up at 5:30 so I could get ready and get there on time. And I did succeed in getting there first.

I brought with me a blanket and pillows in case I needed some support. The room was too crowded so I had no use for the gear I brought with me. It was pointless.

A couple of minutes after I got there another participant came. She was very interested in my Fibro and what I was doing to help myself. She was a little too excited for my taste but I’m sure that’s just the way she talks.

Talking with her already made me tired.

The workshop started and I just couldn’t connect with it. Since it started I fought off my tears (with little success). The idea of sitting in that chair for 12 hours just made me feel sick. Then the speaker talked about us having to have energy and to sit up straight so we could focus. What can I do, energy, I do not have. And sitting up is just too painful for my hips. For me energy is not a matter of “thought”, it’s a matter of fibro (my good friend) sucking up my energies.

When the speaker invited us to walk around the room and talk to people I snapped, and grabbed my chance to get out of there. When one of the workshop team came to see what happened I broke out crying like crazy and could barely speak.

It’s ok that I didn’t connect to the workshop idea, and I’m very proud of myself for trying despite the difficulties and challenges it involved.

This whole experience made me think again about how I am conceived (/grasped) by others.

On the one hand it’s important to me that others know how hard it is for me; on the other hand, it’s hard getting help and assistance from people I don’t know. It’s a weird feeling to be sort of handicapped.

I miss the Shira that didn’t have to consider her body’s reaction with every move.hanuda

And, to finish on a happy note,  in the picture, my cat Hamuda (the 4th), my sweet (female) cat that loves sinks

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Responses

  1. It amazes me how 2 people in 2 totally different places on this planet can connect!!! I so understand what you are writing!!! Hope you have an awesome weekend…….take time to love someone!!!!!!!!!!!!

    • At least you tried, don’t give up trying to do these things and I love the pic

  2. I understand!In the spring My husband and I went to D.C….we stayed at a hotel close to the escalators.They were not running.I had to walk down them…I was in pain,feverish,my legs shaking like jelly,in the midst of a fibro/lupus flare and couldn’t make it very far at all on this trip.We finally got to the zoo and I moved from bench to bench.At some point I was on a subway car and became so miserable from standing and being pushed that I started to cry.We got off and made our way slowly back to the hotel.It was not a good trip.
    We will try in again someday I’m sure!lol
    Keep on swimming!(as Dori would say)

  3. Handicapped? Oh, but you LOOK so good!
    Yeah, right.

    Don’t you just love people who can tell at a glance how completely healthy you are, and then look at you as if you’d grown another head when you can’t do something SO obviously trivial??? (for them, at any rate)

    One can only do one’s best, and on some days that’s just not very good: but it’s still the best the day’s gonna offer!

    Humor helps alot.


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