Two Miles

I walked two miles to the Bourgeois Pig Cafe, the coffe house where we were married. I didn't feel better or worse when I got there. I got a small decaf latte and read A Contract With God, the first graphic novel, which my student T had sent me. It is so dark! Will Eisner wrote it based on the death of his daughter from leukemia. Later tonight I gave it to B and S to read. Their son J died of cancer in 2001. Tonight S wanted to say something sad about J and chemo and I said, No, don't say it, and B said, No, don't say it, and L said, No, don't say it. And she didn't. When I talk about my port and she talks about J's port, all seems doomed. Cancer means J and J means death from cancer. I saw him after he died. He was lying in his bed upstairs. He'd been dead a few hours. They didn't know what to do. He'd been alive the night before, talking to his doctor and patient advocate from the hospital, who'd come to visit. The advocate was from a local restaurant family. And then I got the call from G in the early morning that J had died. We all sat around the table, the same table where we had chicken soup tonight. They hadn't known what to do. I mean, S had just been trying to find clinical trials J could be part of. They called the synagogue and the hospital, which sent an ambulance, I think. Another friend carried J downstairs. When his twin came home from school, early, there were his parents' friends sitting around the table looking at him. I think I hugged him. He said something like, It's OK. Meaning, the death of his brother was OK. Because what else could he say? He had to shrug. Because there were the adults there. And then four or so years later a friend of the family died, another young man, and the adults were sitting around the table and M went up to the twin and said, I'm sorry that you've lost your friend.

There is so much loss. And on the other hand, S's mother had breast cancer 20 or so years ago and is alive in South Florida and Cleveland, depending on the season. Alive and with husband. They go to a seder at their complex and there are no young people to say the Mah Nishtanah. Which is supposed to be recited by the youngest person there.

S gave me Excedrin and then a migraine potion from Whole Foods. Both seemed to work a little bit. I don't have a migraine, just a feeling-run-down jittery kind of headache that won't subside. Much.

Eisner's drawings and stories are so much about suffering. The first begins with eight days of rain. Rain and poverty and unhappiness. Tonight B slumped down a few times in his wheelchair. Just not enough strength I think to keep his head up, back straight. How does Stephen Hawking do it? I asked. How does he channel all his living into his intellect? He doesn't really have a voice, said S, just a mechanical gizmo. How does he go on? How did he find his wife? What is it like to be the wife of Stephen Hawking?

All answers, of course, can be found on the Internet. He has ALS, diagnosed when he was 21. He is divorced from his second wife. He had been able to speak, but his voice was becoming more and more slurred, and then he lost speech altogether when he got pneumonia and underwent a tracheotomy. He uses a speech synthesizer. Its only problem is that it gives him an American accent. As he says on his web site: "I have been lucky, that my condition has progressed more slowly than is often the case. But it shows that one need not lose hope."

1 comment:

BC said...

I think YOU are wise. (i think) B is wise, L is wise, and S is wise. S is especially wise. Learning to say "no, don't say it" and learning to hear and respect "no, don't say it" is hard. It is valiant to resist, especially when she might need to say it.

2 miles is good. naps are good.

headaches are bad.

i hope yours subsides. MUCH. i think this becomes a memorable Pesach ... whether celebrated or not.

wlu --- hi to L.
bc, sbc, & luna c

ps: on being the wife ... i suspect it is not too much different than being the wife or husband of anyone who needs care. we all need care (i think). we care FOR people because we care ABOUT them and we try to be there to the best of our abilities, which often are not enough. but we try. i know a lot of people who don't give points for trying. i do. i give points. i think we get points too, although that is not the reason for trying. we try because we care. but the points are good too.