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After I was forced to quit working many years ago, I have watched others with disabilities closely. I guess I can't account for my interest which was greatly piqued after I was officially declared disabled.
I try my best not to appear to stare as someone buzzes past me on a scooter, or walks by with a noticeable limp, or is pushed along in a wheelchair. But I can't seem to contain my curiosity. I note with some anxiety: Do they appear happy? Well adjusted? Are they with friends or family? Is their life with a disability meaningful?
As if I could tell by judging outward appearances.
But I still want to know since I feel a kinship with them. I AM disabled, too. Every time that I see a person with disabilities that appears to be confident and happy, I am encouraged that I can be that way as well. I need ongoing, concrete, living, breathing proof that a positive life exists even when our bodies function less than perfectly.
How will I, a disabled person, appear to others as time goes by? Will I be forced to swallow my pride and hang a blue and white tag from my car's mirror? Will the time come for me to use a scooter? Will my joints become so affected that my gait and the use of my hands will be so compromised that it will be obvious to others? I hope against all hopes that I won't. But I know better than to foolishly think that I can predict the course of my disease.
If my body's deficiencies become obvious to others, what image, what perception of me and my disability will appear? Will others who are in early stages of their disease look at me and see contentment and purpose?
If, in the future, the invisibility cloak that hides my illness is removed, what will be visible then?
5 comments:
I hang the tag from my mirror, I've had my own since I was 18 (before that I was always with my parents who both have disabilities). I like the hang tag as opposed to the license plate, because it gives me a choice and control. Sometimes. And yes, I've had people give me a hard time. Oh well. I also had an episode where I felt my cloak of invisiblility was ripped off me, in a Target when my body just gave out mid-store (I blogged about it). It's something I was just thinking about again the other day - how do we react when we begin to cross the line into 'visible' (whether permanently or intermittently). I think how we each react would be interesting to analyze.
Being newly diagnosed, I'm still trying to deal with this whole concept of having an autoimmune disease, and I don't think that even my family "gets" it...
I still have to do everything, unless I specifically ask for help. I'm sort of sick of explaining.
Hi Julia
I have been in the disabled world for a long time because I have a 15 year old with both physical and intellectual disabilities. He is my greatest teacher and source of inspiration. In spite of his limitations he really enjoys life. He has friends at school, he loves his music therapy and can play a little piano, he loves to sing in the school choir and memorizes the words because he can't read. He takes therapeutic riding lessons and he plays baseball in the miracle league. He uses both a walker and a wheelchair (the wheelchair is mostly for distance). Life with Marc isn't easy by any means and now that I have sjogrens it is bound to get more "interesting" but it will be okay. We do a lot of fun things as a family and we manage. It just forces you to be more creative in certain circumstances. We have found that if you project a positive outlook, most people will view you that way. You always get ignorant questions and comments but it doesn't happen very often. Marc hasn't known life anyother way so he doesn't miss anything. I think we worry because we fear the loss of something that we have. Life can still be good, it will just be different.
Great blog Julia. very helpful.
Sue, found your comment a real boost this morning. Great attitude.
Can't tell you enough how I appreciate your honesty in your blog. Since being diagnosed I've walked from phase to phase feeling like I was the only one. Then I read your posts and know I'm not alone.
Just this last week I found myself in what I call my "What The Hell Am I Gonna Do" phase. The subject was brought up by Hubby about filing for disability and once again came the tears. "I just don't think my drs believe I'm this bad off." was what I said.
Sjogren's is kickin' my butt. It's not only making life a challenge it's harder and harder to enjoy life cuz I know I'll "pay for it" the next day. (My God Daughter the Preen-cess is in town and boy howdy does my body know it!)
Reading your post and the comments made the tears come back. I'm glad I was able to read Sue's comment because it put things into a better perspective. It's just a different life...but it's life.
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