So, I got my first Remicade treatment Friday. I had to miss a trip that I'd been planning for months to do it.
So far, no side effects. In fact, I didn't even really bruise. I did manage to score a free shirt and Girl Scout cookies. I sort of felt like a resident in a sick children's hospital. I was waiting for the clown to come by.
I had CPR training with a former co-worker who still works for S. and his family. I was too tired to take the high road and vented a little. S's mom, my ex-boss, sent an email asking why I was angry.
I went off a little.
She asked me if it was the prednisone.
This is why my view of myself of a person with a disability/chronic health condition gets so messed up. As soon as I assert that I don't think something is fair, or right, or that I'm having difficulty, I'm fair game for others to diagnose. It's dirty fighting. It's not fair.
I remember when my step sister was talking about how rude someone was to her. She accidentally blocked someone's view and instead of pointing it out, the lady started talking loudly about her -- "Look at her! She just thinks she come in here and stand in front of me... etc. etc."
My step-sister said, "But she was in a wheelchair. I'm sure she's angry about her situation, but that doesn't give her a right to be rude."
How do you know she's angry about her situation? Why does the wheelchair allow you to make that assumption? The lady was probably rude. And that's all you have the right to assume.
I remember reading an article in Listen Up: Voices from the Next Feminist Generation by Nomy Lamm. (I think. It's been so long ago that I'm hoping I remember it correctly.) In "It's a Big Fat Revolution" she talks about how, because she's overweight, every little verbal spar of city life renders her open to insults about her size.)
I feel that way. I feel that because this woman was my friend and I trusted her with my details about my health that I am now vulnerable to having it thrown back at me. As I have become more open with my employers and I discover that I have to take on some of the outward trappings of disability, like the parking permit, the taking an afternoon off work for an IV treatment instead of swallowing pills in the parking lot before I come in, perhaps getting a mobility scooter, I'm become closer to having everything I feel and think explained away and dismissed.
That's the worst sort of discrimination. I am the angry rude person in the wheelchair, I guess, so my point of view no longer matters.
I spent my whole life trying to not be dismissed because I was younger than the people I was talking to, or female, or for whatever reason the men at the table give for making my opinions not count. I never really freaked out about turning 30 because I liked the idea that I had enough life experience that people were starting to take me seriously. I hate to have that undone by a limp or a mobility scooter, or by being honest about my health.