a move to a life lived

There was a headline in the New York Times earlier this week, but I didn't see it until today. The article was about people who live with muscular dystrophy and how research has been unable to find a cure so people living with muscular dystrophy were without many treatments. I read this and started thinking about how true this is for so very many health conditions. We don't know so much about our bodies and so we try not to talk about that. We focus instead on those things we do know and are learning. And so many of our lives are caught on the other side of that line, where we don't know. Know how or why something happens; know how to change something; know the other effects of a treatment.
We live here, not knowing. Struggling. Struggling to figure it out. Struggling to make do. Struggling to live a life.

To acknowledge the chronic illness,
to acknowledge those daily choices
____yes, these pills;
____no, not that activity;
____yes, this balance;
is to reveal the creeping bite of mortality.
To embrace things often hidden
it is to cede a victory
and a move to morbid compromise.
To accept the freedom of definition
and avoid the limit of demarcation;
a move to life lived,
a defeat in which we can
then decide
yes, this is me.
Yes, I want....
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Written 2/20/08