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Monday, November 23, 2009

A Gimp's Guide to Life: Part 2

The No-Show Syndrome.
While one is trying to adjust to a disability, one assumes that much of the rest of life won't be effected This is a misconception. Disability has an effect on every part of your life.

A major change in my life was what I now call "The No-Show Syndrome". This happens in the life of every disabled person I know. You go thru a period where you're not aware nor willing to surrender that you cannot do what you used to do. You will make plans and start projects that you have every intention of carrying to fruition. Usually, this is what you've always done, whether (as in my case) it's trying to assemble a group together with a mission, or (as in a friend's case) it's making plans to run around or hang out. You do all the first stages as you always have- make the phone calls, emails; arrange the place to hold the meeting or when and where you're taking someone or shopping for something. But when the day comes, you're a no-show.

And you do it many times. As many times as it takes for you to "get it". You can't make plans, period. You no longer have control of what you will be able to do. And nobody will understand.

Friends and acquaintances will criticize, call you "No Show ____ " (insert your name) and talk behind your back, which will get back to you. Truth is, they're right. You've become undependable. If you've always been dependable in the past it'll be the worse to go thru. But as all things in disability, you don't have a choice in selecting when you're laid up. As the gimp, you'll be hurt that people don't understand what you're going thru. You'll be hurt by the things said behind your back. You may lose friends, as they become frustrated by your absences.

At some point you come to the realization that life is now a one-day-at-a-time proposition. The sooner you get to this, the easier the transition will be. But there's no guidebook for it, no schedule. It took me years to accept it. It was so, so hard for me to accept it. I was one of those "Let's have a Meeting" people; had been for my whole life. I've worked as a community organizer, as a union organizer... gathering people and holding a meeting are second nature to me. That part of me wanted to keep going. It was such a part of my identity. But slowly it was becoming apparent even to my stubborn Taurus head that I just wasn't dependable anymore. And there was nothing to be done for it. It's just the way it is.

So I stopped making plans ahead of time. I adjusted my life to what I knew I'd be doing no matter what- being in my home. I invite friends to my place. I can still make my home hospitable. I also know how to pace myself now. If it's Thanksgiving, for instance, I organize weeks ahead, like going to war. Figure out what's the easiest route, what can be done beforehand, and give myself recuperative time between tasks. And Just Don't Do what's the hardest. As a challenge addict, that's tough.

It's a learning curve, like everything else in life.


MoonRaven said...

Ooooh and ouch. Sounds like a hard dose of reality--but it also sounds like you're facing it and dealing with it. What a struggle.

It is pretty amazing to read your clear accounting of what you are facing. I am awed by what you are taking on and the good graces that you are dealing with all this. Any real friend will respond, hopefully, with support rather than criticism--but it may take you a while to find out who your real friends are...

Unfortunately, all I can do from here is to wish you lots of love and luck with it--for whatever that's worth. My best wish for you is that things go the as well as they can, whatever that may be.

Austan said...

Thanks, as ever, for your support, Moony. They say "write what you know" and I guess I am. Wishes of "lots of love and luck" is worth a lot!

Yes, and it takes time for real friends to deal with you not being the same person you were, too. That's an upcoming chapter.