4-23-10                 5:38pm

I found out something today that makes me angry, shakes me to my core. It’s hard to breathe. I am freezing on this bus.

I talked to Jane today. Called to tell her about life. I haven’t talked to her since December. And my illness came up. And she said she doesn’t understand why my mom always refused to have my dad’s blood tested for HD. What? I’m sorry, what? The first time Jane mentioned anything of that nature to me was last summer, but apparently it’s been a topic for several years. She even gave my mom the paperwork. (Breathe…)

That woman, my mother, watched me struggle last year with that decision. Trying to get information, to get connected with the right people. And all the while she had what I needed. I asked her today why she never even bothered to tell me. “I got rid of them. You decided you didn’t want to,” she said.

Fucking Bitch. I am shocked and hurt and angry. Her inability to deal with change should not affect my access to information or interfere. I’m pissed. I don’t want or need to be protected and I would appreciate it if she would just realize that.

She had the papers. She held the power. But she made it another secret, another lie. I’m so sick of this shit.

Jane said they (the doctors) dropped the ball with me. Heck ya. That’s an understatement. But it’s not her fault. I’ve heard some of the shittiest non-explanations from doctors. That I should stop eating ramen because it’s poison. That it’s all in my head. That if I go to the gym for 2 hours every morning or stop staying up all night or am just happy that it will all go away. That I’m just a complicated case. Sometimes it’s just silence. They don’t call me back, forget who I am or dread seeing me. They don’t want my ideas. The woman who told me ramen was poison accused me of wanting to be sick. What? They didn’t drop the ball. They just lost it. And every time they find it they hide it somewhere else. I don’t want to look at this today. Let’s stash it in the closet.

Yesterday I had a good day. Today was okay. I was even happy when I got off the phone. But I was hungry and trapped in my house and my mind. And it hit me what she’d said and a few other things. I feel very agitated and anxious. I screamed at a stack of papers and threw them across the room. Then I walked a mile to catch a bus. Now I’m going to be late. (sigh)

I don’t understand. Talking to this person I love so much almost always upsets me… I feel sad. She is one of those people from the “What is love?” post that I travel thousands of miles just to be near. If I were nearer, I’m sure I’d have an answer by now.

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