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Thursday, September 20, 2007

spike manifesto

I am spike. I am who I am and not who you want me to be. I was never good at being what you wanted me to be and now I am even worse at it. So I gave that up. I have my own way of being, my own dreams. I have my own timetable. What you think I should be able to do by now means nothing in my world. I am healing. I am experiencing a remarkable albeit slow recovery process. Nothing is automatic anymore. Being on manual overdrive is the way it is for me now. I march, skip, dance, and fly to the beat of my own steel drum band.

I am spike. I don't "look" disabled. Casual observers do not recognize my double vision in one eye or my physical pain or my expressive aphasia which I have learned to work around. Only doctors note the hyper-reflexia and the ocular-motor dysfunction, sleep apnea and sometimes the fatigue that plagues me. I take naps almost daily. When I don't, I fall more on uneven ground. I don't like falling. So I've learned to manage my energy and to take naps. I can be a citizen of the universe on those days when I am not screaming with fatigue. On days when I exist in a swirl of fatigue, I need solitude and rest. I am comfortable with my own company. This is my brain, my life. Not yours.

I am spike. I do not care much for instructions on standards or how to behave properly or things like that. I compare myself to myself, not to some impossible standard of normalcy. I know that there is much to be said for blending in, for fitting in when and where I am able to. The world does not owe me a living. I intend to work at something just as soon as I can. Try hard to remember that a traumatic brain injury diagnosis means no open machinery, period. That test for factory work that you are dieing to give me is not going to happen. I cannot do it. I am not equipped to work in a factory. Nor am I able to stand on my feet cashiering. Any ability I had to multi-task is dead. I have not given up on myself. I am my own best advocate, not you. You are someone who is being paid to offer a service. I don't engage in false displays of admiration and gratitude when you the professional "helper" finally do something that is in your job description. You don't get to live vicariously off my back any longer.

I am spike. Do not tell me that "mind matters" or show me your stupid green rubber bracelet. I am not placated by meaningless empty platitudes. Do not tell me that you "know" what or how I feel unless you have had to have three sets of six very long needles stuck into the back of your skull in order to ease the severe constant t.b.i.-induced headache. We are all alone in our own skins. You better hope and pray with all the fervor that you possess that you never have to deal with the things I've had to face in the past almost three years. You may not be able to get through it as well as I have.

I am spike. I cannot bend. My body doesn't allow it. When I am able to work on the garden or rip up carpeting, I have to do it my own way-- sitting. Do not criticize my lack of speed unless you are willing to offer your help. I am not emotionally invested in doing anything because you say I should or at your whim. This is the way of it. I am also not interested in hearing any wangst about "how difficult it is to live with [someone who has] a t.b.i." I don't complain loudly about how hard it is to live with a neuro-typical. Take your wangst to a support group for families and friends. I claim my right not to listen to it and not to get caught up in it. I have no time for bullshit.

I am spike. I am not interested in your pity or your displays of affection. I do not want to be swallowed in your vampiric bear hugs or have the life sucked out of me by your neediness. I have no energy to spare. I don't care for your crises or your drama. If you cannot relate to me friend to friend, I will reject your overtures. Anger is my truest friend. If you are afraid of my anger, chances are that any interconnection between us will be limited. If you are looking to get me "healed" of my anger or want to convert me to your religion or your way of being, save your breath. If you want to be my friend, you must remember that I am living on borrowed time. Those of us who have a nodding acquaintance with Death are forever changed. I offer no apologies for my attitude. I am not a t.b.i. I am spike. I can be a great friend. Or I can leave you in the dust as I and my dog go wandering off into the sunset happily.
I am spike.

sapphoq healing t.b.i.
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