reset

I have been sick for five years. It feels like much longer, but when I sit down and measure the time from the point where my life could no longer go on as it once had the result is five years.

Five years of tests, and diagnoses, and new diagnoses, and round-about treatments but never cures.
Five years of educating myself and others.
Five years of being my own advocate.
Five years of “yes, I know, I don’t *look* sick”.
Five years of watching the typography of my life and the people in it deconstruct and reconfigure itself.

At first the changes felt limiting, even stifling. I grieved for the person I had grown accustomed to being because who I believed myself to be at a fundamental level had been stripped away and I was left without a road map, or even a common language. I had to make my own map, my own language.

I’ve learned who I am now. Or relearned really. Some of who I was still existed under the illness, some did not, and some of the old me I find I am better off without. New aspects emerged. I found a deep well of patience within myself; patience for the days I could not get out of bed, patience for the lack of support and knowledge offered by western medicine, patience for the slow path of my own rediscovery.

I also found a bottomless source of gratitude, because even in this vast struggle I had amazing support in the form of family and friends that walked those five years with me, who faced the frightening unknown by my side, and held the flicker of hope for me when I could not hold it for myself.

I learned (am still learning) how to be in this new body, with its physical limitations, its frequent muddy and labyrinthine passages to reach into my own mind and recover the worlds of creativity that still exist there. Illness altered my perspective on life, it transformed me, and it honed me.

I am here now, in a long plateau of health, nowhere hear the level I once enjoyed, but greater than the worst of my crashes, and I find myself grateful for the health I have, and ready to venture back into the world with this new understanding of self.

I am at a reset, if you will, eager to see what unfolds next.

Los Angeles
July 2018