An Introduction, Puglet Style

I'm not sure the best way to introduce myself here, in this new forum. I've blogged since 2004 about various aspects of my life, the good, the bad, the misspelled, and when Chiari entered the picture last year I started to write about that. It was a way for me to make sense of everything, to reconcile myself with everything..a fast and furious diagnosis, a surgery I was unprepared for, a recovery I was even less prepared for, and the aftermath of a life and body changed. It's still something I'm working out. I told Lace when she found me months ago that I worried how my "voice" could impact others, and I told Queli today when she graciously invited me to this blog that it was still a concern.

So who am I? This is pulled from a post I did on May 1st, Blogging Against Disablism Day.

"I am a 30 year old woman who stands 5'5, a bit less since my last surgery. I have legs that are strong, a stomach that is soft, arms that once could easily hoist 50 lb bags of flour and fingers that could crimp dough and shape fondant into rose petals and dip quickly into hot sauces to bring it to my lips to taste. My hands are less steady now, my arms struggle to lift two lb dumb bells, my shoulders are less muscle and more scar tissue but I'm fighting and slowly winning the battle to come back and plunge my arms back into bowls of batters. This incarnation of a brain surgery patient is only the latest. It will not be the last time I come back and rebuild.

I am a woman who has had more surgeries and emergency room visits than I have had years on this earth. I am a girl who is still scared that her past, present, and future will all come to a screeching halt in one of those curtained cubicles, who will be left a footnote in a chart, a diagnosis code, tucked away into someones computer and not into anothers heart. I do not want to go gently or quietly into that dark night. I want to write my own history, experience my own present, and plan and shape a different future.

I am an actor, a writer, a pastry chef, a slacker, a comedienne, a dreamer, an idealist, a humanist, highly intelligent yet ridiculously stupid and a ball of raging fury and fight and one liners and balloon whisks and prescription bottles and tattered plays and dog eared books. And beyond all else, I am a fighter.

I have fought my immune system, my thyroid, my womb, my kidneys, my joints, my neurological system, my colon, my brain, my genealogy, my genetics. I have fought my parents, my friends, my lovers, my employers, my co-workers, my teachers, my classmates, my doctors, and myself. I have warned others to not limit me, or judge me, or change me, or try and make me safer or quieter. Sometimes they listen. Sometimes they ignore. And when they make that choice, I make mine, which is to fight louder and harder and longer and more dangerously, to show that I can, and that I have no limitations.

I am a person who embraces being unique and seeks out what's different. I am not standard. My hair is too short, my laugh too loud, my speeches too long, my silence too deafening, my IQ too high, my potential oft ignored, my choices questionable, my decisions irrational, my fears insurmountable, my passions all consuming. I use humor as a defense, I equate food with love, I'd rather read a book than talk to people, I'm scared of making friends, I hate being exposed, and yet all I want is to be understood and embraced and have someone look at me in amazement and wonder the same way I look at this world. So time after time, I choose to lay myself open in a theater, or kitchen, or on paper, my ways to show you who I am, because I'm not just a patient under a scalpel, an image on a CT scan, an appointment in a book, and while you can tell me what I am, you will never tell me who I am.

I do not know how to define myself, or define my disabilities. All I do know is that I will not let anyone else try and do it for me. My damage is mine. I have earned it."

And now? I am still that woman. But now, at 8 months after my surgery, I am pulling up to 70 lbs at physical therapy. I am going to Spain in October. I am going to teach for two months in India. And I'm finally learning all the meanings behind " decompressed."