Childhood From a Chair

If I asked a stranger to picture someone labeled as disabled and describe them I would typically receive a response along the lines of “Maybe slightly deformed or missing a body part, probably in a chair, older, maybe gray hair,” and so on. My image is of bright blue eyes, a toothy smile with a few baby teeth, scrawny, a humorous, light expression, and yes, a wheelchair. His name is Brantley, he’s 11 and disabled. He’s never had the chance to play sports with the other boys or chase the girls on the playground. He has severe and consistently worsening nerve damage. He’s dying, and I have to watch him go from leg braces to walker to chair, I have to watch that child grow up already knowing what it’s like to look at death. Brantley doesn’t seem to care much anymore, he’s light hearted and humorous. Everything is a comedy and everyone a joke. Yesterday, he was so enthusiastic. He was using the rails to support himself and didn’t fall. He looked at me when I helped him back to his chair and said”I’m getting better! I can almost walk now!” How do you explain to a child that he’s not and never will get better? How do you tell an eleven year old he will never walk? How do you knowingly shoot the last hope in a kid’s eye down? How do you put out the light in your baby brother’s eye, how do you condemn him to know reality? I couldn’t.

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Knife to My Throat, but the Case is on

The knifes to my throat— a little severe— but the case is on. I suppose my throat won’t be split, of course my esophagus could be collapsed, but that sounds like a fatality waiting to happen. My knife, without the metaphor,  I suppose represents my hand. I’m waiting now. Waiting for the summer. It’s simple really. I wait for them to call. I get an appointment. I wait for my appointment. I go to my appointment. I get tested. I wait again. I get the results. I know if I’m dying. It’s nerve racking not to know. To look at careers I might be interested in knowing I may not get to have a career. Friedreich’s Ataxia may be my future while everyone I know becomes doctors, lawyers, actors, writers, pilots, and so on. I can’t openly tell anyone this, that I’m scared. Once they know they get emotional and feel pity for me. I don’t want it. Take me off your prayer list and out of your thoughts. I’m not a charity case. I’m too independent for those setbacks. That is exactly why I’m scared though. I’m too independent. I don’t want to slowly die and be confined to a chair, to burden everyone and make them take care of me. No, I refuse. I decided a long time ago if I’m positive, if Mr. Friedreich wants to tango with me, I’ll do the salsa, I’ll cha-cha slide right out and laugh while I do. I can’t tell them that though. Well, I suppose I could, If I told them i was going to salsa with Mr. Friedreich they would assume I meant face him. No, I’m not that helpless. I’ll die on my own, before he takes me. I’ll stand him up in a very convenient way. Before we meet, before he has a chance to step on my toes.

ImageMy bother, he can tango with Mr. Friedreich

Beautiful Atrocity

I love writing. Not because of the words or passion, although I like that too, but because of the manipulation. My words can be anything I want them to be. If I want to make something that most consider repulsive admirable, I can. If I want to distort beauty into treachery, I can. I have control for once in my life. I’m stable and secure. I’m home.

Beautiful drops fell to the floor, my own crimson rain. It even smelled like rain on the cool tile, sweet, newly fallen serenity. I felt no pain, I felt sensation. The silver blade was such a sight, glistening, silver on crimson, such a contrast of color. I was smiling, enjoying my peace, my sensation. I went out of my way to feel this moment, to know what is in my heart— literally.

Self Therapy

Years ago,my mother forced me into therapy. My best friend had just moved away. She and my father were divorcing. I was quiet. I was having severe stomach pain, which according to the doctor just had to be stomach ulcers caused by depression— it wasn’t stomach ulcers. I walked into the room— very unwillingly— and didn’t say a word. The entire hour I was there I sat there in silence, crying. I continued to cry after we left and I couldn’t stop. I felt so pathetic, so absolutely pathetic. I couldn’t breath, I couldn’t think, I could only cry, and that’s all I did. For a week I lay in bed and cried. I didn’t eat much. I lost a bunch of weight and for the first time, I felt depressed. I don’t know why therapy made me feel so dead inside, so broken. It only worsened when they made me go back. It was a different therapist, some highly esteemed professional with beady eyes and certificates hanging on the wall. I hated it. I hated being watched. Crying is something I just don’t do and now I was and he was watching. I wanted to scream. I couldn’t talk to these people. These people who would smile and act like they understood me, like they didn’t think I was broken. I hated them for it. Just waiting to tell me what was wrong with me. That’s precisely what they did. As I sat there crying, in order to provoke my speech, they would tell me about all the ways my life was screwed up and ask me about it as if talking about it and really noticing it would make me feel better? I wasn’t troubled before therapy. I was happy, genuinely happy. Since then, the empty, misunderstood feeling won’t go away. I cry at night, and I don’t know why. I wake up terrified, huddled in a corner remembering only petrifying fear. I feel defensive. I feel so alone, so afraid to let anyone in, let anyone know. Honestly, the only reason i would ever submit to myself to therapy is if I were suicidal, but then therapy would do no good. The whole “confidential” rule doesn’t apply in that case, and I can take myself to my own “suicide prevention” professional. I hope that never happens. I’d hate to ruin their track record; I’m too stubborn to have my mind changed or be told how to live my life. Writing helps though. I don’t feel like me when I write. I’m someone else. I know no bounds. I know no enemy. I know no friend. I know my pen, I know my keyboard, I know my paper, I know my story. I become someone I don’t know. A different state of mind. If I ever look back and read my writing, I’m shocked. It isn’t me. It’s someone inside me. Maybe that’s why I feel empty. Unless I’m writing, the being holding the pen isn’t there. Maybe she wanders off to a fiction land, maybe the therapists scared her too. Maybe she’s that imaginary friend I never quite met. Maybe she’s with my hands now, typing this. Maybe this is her through my perspective. There is a lot of maybe’s, but maybe this, writing through her, maybe this is my self therapy, Maybe.

Image

Strong

Emotionally, I’m strong. That’s something that has always characterized me, that strength. To be able to get up after everything and blow the dust away as if nothing had happened, to piece the most complicated puzzle together, to shoulder the world and still have mental strength for my own problems. I was undeniable, unbreakable. But with him, I didn’t have to be strong. He was strong for me. He offered that support and comfort I’d always had to give myself.  He was the only person I’d ever been able to let my guard down on, to depend on, to need, and when he left, I fell. I didn’t have my strength. For the first time I found myself so weak that I let myself break, let myself shatter into a million pieces, and then cut myself on the shards. I found the one puzzle I seemingly could never put together, myself. And nonetheless, in the impossibility of it, I’m still trying to piece it together. I’m still trying to solve my own puzzle.

Lovely Little Crucifix

“Religion is a like a penis— it’s okay to have one, as long as you’re not shoving it down everyone’s throat.”

Personally, I’m not very religious and don’t care if you are. I just get really ill when someone tells me that not believing in their god makes me a bad person. Who the hell are they to judge me anyway? After all, most the “Christians” I know act like because they go to church on Sunday the other six days are best spent breaking the “Commandments” they try to impose on everyone else. No, I don’t believe all Christians are hypocrites, some are stuck up someone’s ass or so perfect that all they can be is critical. Well, that’s not entirely true. There are some Christians that make me want to believe in God and all his glory, the genuinely angelic people who do good deeds and try to help the needy. Those Christians I’m okay with. However, when I’m minding my own business and someone brings up religion (a topic I typically avoid) and starts to scold me like I’m their child for not sharing their beliefs, I get more ticked than the clock on the wall. I thought God was supposed to be the one judging me? Next time, I may rip the crucifix off their neck, break it in half, and use it as ear plugs. Otherwise, I may end up breaking number six (Thou shalt not kill.) Actually, that is still unlikely. I don’t think I could kill someone over such a trivial matter— see, I’m not so bad. 🙂