Monday, May 7, 2007

A failure to advocate

I am terrible at telling people what I need.

I've been working full time as S's in-home staff person for a year. I was part-time the year before that. His mom was one of my best friends. I love S. and his little sister like they were my kids...


For the first time really since high school, I have run smack into a flare. But it's been a slow flare, a creeping up on me flare. So I don't trust that I'm really having issues. Maybe I just need more sleep...

I don't know how to say "I can't do this." At my job with S., I wanted to believe I could do it. When I couldn't, when I looked at the amount of pain or fatigue I was dealing with, and decided that I wasn't able to do this without help, I would put out a call over the email list to all of S's caregivers and ask for help. Inevitably, there wouldn't be any, so I would go into work. I would try my best to cover it up, say I was fine, and I really believed that I was. So yes, I guess I am the girl who cried wolf. Except maybe in my case, I see the wolf, fight it off, and make everyone I believe I never needed the help anyway.

It blew up Sunday night between S's mom -- one of my best friends -- and me. I called in sick. She had a final. She didn't believe me. I decided it was time to dig my heels in for once and declare that I needed help. But, well... it got really ugly.

I am lucky. I've been able to say, "My disability does not interfere with my job." But it did. And my inability to self-advocate, along with her inability to take me seriously, has cost me this job and friends. This is heartbreaking. And I am bitter and hurt. I loved all of them, but especially him.

Here's how most people feel about invisible disabilities, I've come to believe. She revealed as much to me during our e-fight:

Honestly, I think your body is manufacturing a major depression.

Thank you doctor. My body is attacking my joints, which makes me sore and gives me flu like symptoms.

It also confirms my worst fears -- that people don't see me as someone with a disability who is trying very hard. That people think I could just get better if I stopped paying attention to it, if I just shut up and played along. And because of that fear, I exaggerate certain manifestations of my disability, I know I do, just so I don't have to explain. I lie. I say I'm sick when I really mean I'm absolutely dead tired and can't handle it safely. (I drove through a red light the other day. It's THAT hazardous). I say I'm tired when I'm really in pain. I limp when getting out of my car if it's in a disabled spot, even if I don't really have to limp, so people won't judge me.

"Your body is manufacturing a major depression."

No. But the strain of constantly wondering if I'm lazy or worthless is a major downer.

I should be glad that I worked in a house for two years, in close, really tense situations with a teenager with very severe autism and profound needs (we used to say "severely autistic and profoundly wonderful") and this was our first fight.

They are there for a reason in a job. Waiver staff is so difficult because you're supposed to love like family and obey like a servant. We had a good run and I assume, that one day, our friendship will recover.

But I miss that boy and his sister so much.

(note -- this post was edited 11/29/07 to remove some of the gory "he said / she said" details. Hindisght is 20/20 I guess so I tried not to edit too much.)


Risa said...

Hey- It's Marisa from over at LJ.

This person, even though you thought of them as a friend, apparently was not. A person who cared for you would never treat you that way.

I'm sorry. It hurts. I've been there too.

Lesley said...

Hey Risa.