Tag: epilepsy

  • I am not going to give a rundown of my month; you don’t deserve the frustration and I’m not interested in baring my personal life for folks to read. I’m no one’s friend here, and it wasn’t particularly interesting anyway. It was just…hard.

    Because I’m chronically ill, I forget what it’s like to experience violence from something outside my body. My day-to-day life is a minefield of managing a disorder that, when triggered, provides me with heaps of trauma that I then have to wade through. I spend months – sometimes years – working through my fear while still living in the body that is responsible for that trauma (and threatening to inflict more).

    It is not a fun place, my body – my brain, specifically. But there’s nothing for it except for suicide and I’d like to at least enjoy my thirties. Forties, too, if I get those years.

    Vigilance and violence are part of my life. They are part of my mornings, afternoons, evenings. They are part of my writing practice. I think about them when I cry, because the action is not entirely controllable. I think about them when I laugh.

    But this month was difficult because of an external force and it felt like a privilege to experience that. It was a perverse feeling and made me feel bad, like I was invalidating other people’s terrifying experiences with abuse, and yet I found it comforting in some ways. It gave me something to fear that didn’t come from me.

    I could lock the door. Separate myself from her. God, what a luxury that was.

    The month is over and the danger is gone. My apartment feels like my own again. I’m back with just me and my brain. I am glad for it because weathering that danger was exhausting, but there was something to knowing she couldn’t hurt me when I was staying with a friend, across town, that was soothing.

    Chronic illness is such a strange thing. The filter through which I see the world makes it difficult to relate to other people, and my relationship with fear and pain is very warped. I am a great listener and like to help folks with their problems, but I often find myself holding back when talking to friends, because their problems are so, so bearable to me. I’d love to have their problems, and only those problems.

    I’m going to stop with this self-pity and move on to my little recommendations section.

    Music: Delirium Division, Little Pink Houses. It’s a rock song. I just really love it. It’s been on repeat for me.

    Stuff:

    1. Comic: Vinyl by Image Comics. It’s about a serial killer with Alzheimer’s who is emotionally attached to his FBI agent. He saves him from a murderous cult. It’s very, very cool.
    2. Been wearing my half-rimless glasses. I like them but they make me look like a librarian. I’ve decided I don’t care.
    3. I’m going up to Marblehead on Saturday to drive around. It’s where part of my novel is set.

  • There have been days in my life – once, two full weeks – where I felt out of time. It’s similar to dissociation but more of a disconnection. Reality remains, but it’s not solid (while dissociating, reality remains – I know where it is, but I can’t engage). For those two weeks in 2017 I felt strongly that it was actually February of 2012 and I had an essay due. I felt that, somehow, I had to get it together to write about Lord Byron and his club foot.

    Februaries can be hard.

    And there are days when I feel small and young, and I remember my childhood hamster. Her name was Angel and she was very mean. I kind of liked that. Her hair matched mine because it was orange (pictured at left).

    I often feel very old, but that tracks with my real timeline. I am not chronologically the oldest person who’s ever lived, but my personality doesn’t quite make sense for the average 30-year-old.

    I am sick. That’s why. Nothing exciting. I’m old because I’m still here and I’m cranky because no one seems to care about what is important. Unfortunately, what is important is what they say is important: family, friends, love, art, nature, experience.

    Hallmark sayings and boring cliches do have substance, which I find a little frustrating.

    I think you have to be old – in experience, not years – to understand them. “Be yourself,” especially. No one can tell another person to be themselves and not sound patronizing, but the moment it clicks, when you realize that you must be yourself and there is no other option – the phrase is suddenly frightening.

    “Be yourself” can be an awful thing to say. It used to be for me, but now I find freedom in the phrase. It gives me permission to wear menswear and to draw monsters and to write science fiction. It allows me to stop competing with writers I admire and gives me the space to appreciate their work. Being myself is nice, and it would be even more fun if I liked my body.

    But like I said, I am sick. It is hard to enjoy a body that doesn’t want you there. Sick bodies want to die, and so they’re inhospitable to the life in them. I am that life and often, I wish I weren’t. And yet I must be myself, there is no other option, I have to remain and continue to flicker my bullshit electricity over a half-dead brain.

    I used to wish I weren’t sick, but you can’t do that when you pursue being authentic. If I weren’t sick I would not be this person. I think it’s unfair that she exists because suffering is an awful way to forge a personality, but I’d rather be her than be anyone else.

    Anyway, I’m done talking about this. I’m going to send you home with a gift bag full of media treats:

    Comic: Beyond Real, Vault Comics

    1. Figure Drawing: Design and Invention by Michael Hampton – the textbook I’m following to learn to draw figures more accurately. This is a pirated pdf.
    2. Three Stanley Avenue Guest House (Kingsfield, ME) – I stayed here for four days a couple years ago. They have crappy wifi and there is no one in the town. It was one of the best vacations I’ve ever taken. Cheap as hell, too.
    3. Ebony graphite pencils are the best. Soft and quick – perfect for drawing fast on newsprint.

    The most moving and most interesting piece of music I’ve listened to recently: