Brain/body

I don’t have any happy things to say today. No good morals to the story of my life. I am sad and worn out, and I want out.

I have cried myself to sleep three nights in a row. I am tired of nighttimes, where every dark thought creeps its way into my head, and there aren’t good answers to the problems that I have found myself in, and I wish I was 20 again and a smoker and a full of an arrogant resolve that said I could do anything.

I am trapped in a body that I hate and don’t want, didn’t ask for and don’t identify with. I pinch the flesh and curse it for being fat, for being crippled and broke down and in pain. I am angry that it continues to betray me after all these years. I throb in pain as I cry silently, and know that this is my fate: a loneliness that no one can ever know but me: to have a spirit that is alive and full and completely unable to be be expressed by the lemon that I have been given by my asshole parents, who topped off the recent brain surgery by mailing a 46-pound package to my house with the remnants of my childhood stashed inside. It bespoke the evidence of their hatred toward me. I am a castoff, a degenerate: they hate my flesh too. And I don’t blame them. I am ugly, a scar, a mar on everyone who comes into contact with me.

The incision from my posterior fossa decompression has not healed yet. It’s been a month, and there it is, a festering wound on my neck, white and pink and red. It’s ripped open in the middle while the rest of the scar has heled up into my hair and down my neck. It’s a reminder that my body sucks. It won’t do what it is supposed to do, so that I may be subjected to additional atrocities such as cerebral spinal fluid leaks and spinal taps and medical residents so that I can live out my own personal Grey’s Anatomy anytime I am ushered to the Emergency Room.

Daily I am greeted with a pounding headache, worse than what I had before the surgery. My surgeon dismisses me: “I am not concerned about these headaches,” he says. When they abate, I find myself with my hip giving out and my leg buckling. A trip to Target is like navigating a minefield: Can I make it throuhg Health and Beauty without faling down? Should I rest in the candles before venturing to the registers? I will not use a wheelchair. That is admitting defeat, and I don’t look like I have a disabililty. I just look fat. And therefore lazy. And I’ve already been fighting that all my life.

I am afraid of the ice that has fallen already this winter. I am terrified of leaving my house. What if I fall and hit the back of my head, where they have grafted a patch over the dura, the membrane that covers my brain? My condition renders me naturally graceless, and I always fall on the ice.

I am afraid of drivind, and turning my head. What if I dehissicate my wound further?

I am afraid of walking to far? What if my leg locks up for good?

I am deathly afraid of the hospital. What if they decide on another spinal tap? They already told me I was too fat, so the chances of getting it done within a few pokes were low. One resident told me that he has poked people, dug around in their spinal cord, for up to 30 minutes. What if that’s me? Because I am too fat? I am having a panic attack thinking about it right now.

This is the rest of my life. Spinal taps. Maybe another brain surgery. One resident told me maybe it didn’t work. The surgery. An inability to walk properly. Hand tremors. Twitches all over my body. Brain fog. Dementia. Chronic, neverending pain. MRIs. Painful IVs. Fighting over pain medications. No career. Maybe quitting graduate school. Here I am 31. Two years ago, my body could do anything. And now, I live by the whim of my body. I feel like my life is over. And really, I wish it was.

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5 Comments

  1. Sarah said,

    December 2, 2008 at 7:07 pm

    Hi There – I haven’t commented before but wanted to now. I have been in a similar place where you are at the moment and it sucks. I have the same fake membrane on my skull from a brain surgery long ago and a chronic pain condition that took forever to even get an answer to what it was. There are still days when I am so mad knowing that this is not what I signed up for – having no control over what I can do, wondering if I can ever have a career I can excel at when I get incapacitated all the time, doctors who dismiss me, etc.

    But you know how much that all sucks. I won’t try and say (as I am so often told) “things will get better” “everything will be ok”. I just wanted to say that while your experience and my experience are probably miles apart I felt very connected to your writing. The next time I am feeling exhausted by simply existing I won’t feel so alone.

  2. Patsy Nevins said,

    December 2, 2008 at 7:15 pm

    I have nothing grand to say, no answers to give you. I just wanted to send you healing vibes & positive thoughts, to let you know that I am thinking of you. I wish we could wave a magic wand to make everything better, but perhaps at least we can connect a little bit & let each other know that we are not completely alone.

    Hugs & best wishes to you. I sincerely hope that you will heal & improve.

  3. vesta44 said,

    December 2, 2008 at 7:27 pm

    I am so sorry you are going through this. And for what it’s worth, when you do venture out shopping, if you need to use the electric cart or a wheelchair, do it. Your safety is more important than what some asshole might think about a fat person riding through the store. I don’t have all the problems you do, but I do have mobility issues, so I use an electric cart when one is available. I heard someone make a comment once, and I told them fine, I’ll walk, and when my back cramps up and I fall on my ass, they can call a fucking forklift to lift my fat ass off the floor because that’s what it would take (at 375 lbs, there aren’t many people who could lift me up if I’m not capable of helping myself). That shut them right up.
    Do you qualify for some kind of home health aide? Maybe someone that can take you shopping, make sure you don’t fall, that kind of thing? I know it’s not easy to ask for help, but if it will give you a better quality of life by letting you have more confidence when going out, it might be worth checking into. It’s not giving up, or being defeated by your health, it’s taking care of yourself as best you can, and you deserve that.
    As for your parents, if they aren’t going to be there for you, it’s not because of anything that is wrong with you, it’s because of something lacking in them. Believe me, I know this. It’s taken me 30 years to figure out that it wasn’t because of something I had done or was that made me unloved by my mother, it was because she’s a selfish bitch and never should have had kids, ever. Sometimes, the best thing you can do is cut off your family and tell them to go to hell and leave you alone.
    I wish I could do more to help, I hate to see people in so much pain, of any kind.

  4. AM1 said,

    December 2, 2008 at 10:54 pm

    Dear total stranger on the internet: ::hug::

  5. JOy said,

    September 18, 2011 at 9:17 am

    Wow, God’s Best to you!


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