A couple of weeks ago, I posted this poem about my brother. It's about the night I got a call from an emergency room doctor telling me that my brother had suffered another stroke, and it's about how I was placed in the position of giving guidelines for whether to let him live or die.
My brother is a long story, but the heart of it is that for the last 6 years I've been responsible for the care of and witness to the steady decline of a man I love, a man who knew a dozen languages, a philosopher who knew enough nuclear physics and computer code to make a tidy living while leading Sierra Club trips and pursuing his passion for trains - old trains, new trains, passenger trains, freight trains, real trains, model trains. He loved traipsing around the Sierra Mountains and the back roads of Italy.
When I presented him with a copy of a novel I'd written, he opened the covers, read the first page and threw the book against the wall. On page one I'd mentioned a 1954 Chevy Bel Air V-8. "They didn't make a V-8 in fifty-four!" he shouted. He did not suffer fools gladly, and often in his eyes I was the fool.
He sang in the Berkeley opera. He taught me to play guitar. He has a collection of old blues records that's like a field trip to the Mississippi delta.
He was a beatnik in an era of hippies, a cynic in an era of optimism, an alcoholic in an era of drugs. He supported every charity that came to his door.
A week ago, he had another stroke. I was with him yesterday. I am still the incompetent god, but still the only one on call. He is in hospice care. He has horrible infections in his skin and needs occasional morphine for pain. He fades in and out. Dementia has decimated his brain, but he still recognizes me and his old friends and - I swear - he understands what we say even if he can't respond. I am convinced that somewhere within all the confusion and incoherence of his mind there is still a kernel of clarity. I am convinced that he still wants to live and that he will let us know when he is ready to die. Until he is ready to accept death, I am not going to accept it for him. The hospice wanted to maximize his morphine and limit his other drugs, to limit his feeding, to consider what they view as a poor quality of life, to let him go. I disagreed, and by law I'm still the one in charge.
We were always telepathic. He came to me two weeks ago, inspiring me to read that poem. He spoke to me yesterday without opening his mouth. He still wants to live. I'm not making this up; it's too painful for fancy. He still wants to live.