There are no moments when I can ease up or be totally at peace with John’s condition.
It never never never goes away.
His beautiful mind is damaged permanently.
An enormous talent, trapped in a pile of spaghetti between his ears.
My pain is excruciating when I speak to him and he misses the concept.
My pain is excruciating when he speaks and language fails him.
Whoever said this was right: “A mind is a horrible thing to waste.”
Whoever said this was right: “Never, never, never give up.”
His pain is visible in his face when he has a thought that has no words.
His pain audible when he screams “it’s so hard to commoonicate.”
His tongue struggles with the messages his brain sends to it as mush.
His one good arm shakes as he releases his anguish.
Imagine the most beautiful thought you’ve ever had.
Remember the exquisite sunset and wanting to share your joy.
Sharing joy, sharing pain, sharing love, sharing fun.
The sharing is what is lost. How lonely is that?
He now lives mostly in his own private world.
Ensnared there by his damaged brain.
No one knows how rich his world is now.
He can’t tell us. Can he tell himself?
He has relearned more than was ever anticipated.
He often tells me “100 or more”.
That’s how long he wants to live.
There is a definition of true courage.
Day by day, a few more neurons find their way home.
Miracles do happen and John is one of them.
I live in gratitude that I am a witness to this intrepid warrior.
He lives in gratitude that he lives another day, to compose another piece.
For more information about the book, see my personal website at http://dontstopthemusic.co