LISTENING TO A PARENT WITH ALS
It started in my left foot,
it’s the worst one right now.
I don’t want to get stiff,
don’t want a feeding tube,
I want to eat like I always do.
I’ve researched this disease–
it’s stealing my body.
What about your other patients–
the young woman–
does she have children?
And the one
who can’t hold her head up.
You know, you can’t see the wind,
or a word or love. I wonder
if you become energy.
I want to have control at the end.
I think the light people see
is just the brain shutting down.
One week I can get in the tub,
the next, I have to figure a new way.
