Thursday, May 14, 2009

Who am I and What is ME?

Two separate questions, but becoming harder to distinguish.

Who am I?

I've always shied away from definitions. Even the most casual---select an icon, post a one-line status message, the tweet of a moment----bring me up short. How to define myself in this time, in this place, to this audience? How can my photo, my name or my bio convey a sense of me that has approximate truth? And of course it doesn't really matter, as we're all busy constantly defining ourselves and only briefly making reference to the definitions of others; bees touch flowers and fly on, the point never being the flower or the pollen or the honey, but the bee.

Pressed, however, I would once have defined who I am in standard ways: by what I do for a living and what I do for fun, what groups I belong to by nation and state or by gene pool, the phase of life I'm in, degrees earned, sexual preference and familial relationships. I remain a female Arab-American Californian MFA USC Film School graduate straight liberal pagan environmentalist funny homeschooling single parent in her 40's, not in any particular order.

Once I would have added, "I'm a screenwriter. I write and edit for a living, and sometimes work with the state parks. I enjoy hiking, kayaking, and struggling to identify flora and fauna. I prefer acoustic music and particularly world folk music: listen to a lot and play a little. I enjoy folk dance and am learning a few varieties. I love steampunk style and have some sewing and manufacturing projects in mind, as well as a steampunky screenplay in the works. I could be called a bit of a homebody since I enjoy gardening, cooking and baking more than going to parties. Even so, my kids and I travel whenever possible, taking road trips, visiting friends and family, camping. I can cross-country ski a little and want to learn more. I'm not a great artist but I like to mess around with pastels, sketch a little. I dream of sailing clockwise round the Mediterranean, stopping in every possible port and recording dance and music. I'm a homeowner, working to pay a mortgage and planning on assisting my kids through college with the equity."

All of that has changed.

Enter the second question: What is ME?

Myalgic Encephalomyelitis is a disabling disease. I won't go into a clinical definition. You can look that up as easily as I can, and can probably comprehend it better than me. Reading comprehension is one of the things the disease has stolen from me.

So I'll stick with what ME is to me. ME is the pain that holds me in bed for an hour or two after I wake. It's the profound exhaustion and all-over aching that strike after the slightest exercise. It's struggling to cook a meal or wash a dish, and feeling triumphant but exhausted if I can run an errand. Then, it's back to bed to rest up, hoping to ride out the pain and haul myself up onto my feel again to cook dinner.

Take the worst sinus infection you ever suffered and keep it with you forever. Or how about pneumonia plus a concussion? I've had both so I know. This is how ME feels to me.

I have better days and worse days. I make plans and cancel them. Loose ends stay handy, ready to be picked up and dropped again.

I can't dance, play music, hike, sew, earn a living or plan for my children's education, travel or dream anymore, so who am I? Am I ME?

ME is the governing part of me, now. It's the part of me that says I can't add to or revise this, that if it will ever be posted it must be posted now, and that this much writing was too much: it's time to rest, and rest, again.


  1. Anonymous14 May, 2009

    Kassy, I loved this disclosure about you and ME. It's difficult to know how to feel, but not really... Do I feel sorry for you? Or do I feel encouraged, humbled, and enlightened knowing this about you? I say the latter. To know that you DO get up and you DO continue, that you are there for your kids, for whoever needs or wants be to in in your light at any given time, this makes me see my own life in yet a new perspective. If ME is YOU, then it is who you are now because of it and you are no less worthy now than who you were before it. But you know all that.

    Thank you!