Writing About Real People

I recently published an essay about what it's like to live with someone who is struggling with a neurological disorder. (To be specific, his disorder might be multiple sclerosis, or it might be a form of ALS. We don't have a definitive diagnosis. All we know is that it sucks.)

I published the essay (called "Toadal Chaos") in Gulf Coast, a wonderful journal out of the University of Houston.  I was really proud to be in this issue, because it's very beautiful and contains some very fine work. The problem was ... I couldn't tell anyone.

While I had implicit approval from Sam to write about our struggles, I hadn't shown him the essay. It was hard to write and I knew it would be hard to read. I was afraid it would hurt him. To be honest, I was sort of counting on the fact that only writers read lit mags. But I felt guilty. Since I've been writing nonfiction I spend an inordinate amount of time worrying about privacy and trespass and truth, etc.

Then a friend gave me a copy of Sharon Solwitz essay, "The Witness Complains," about living with her husband's MS. Our stories are remarkably similar, although we expressed them in very different ways.

So I wrote to Sharon and asked her whether she had shown her essay to her husband. How would someone react, seeing himself exposed in such a way? She kindly wrote back immediately and said that it had been difficult for him to read, but that he was grateful. Her words had shown him that she had seen and understood what was happening with him. Illness is so isolating.

Still, I didn't show my essay to Sam. He had to ask for it. He said he wanted to read everything I've published in the last year. I prevaricated. There isn't much, I told him. Which is true. It's been a dry year. He persisted.

I went into the other room while he read. His sobs were so loud I had to come out several times to make sure he was okay. I cannot even say how difficult those minutes were.

When he was done, he said it was honest. He said there was no reason for me to have kept it from him. He said it was hard to read.

The story doesn't end there. Last Sunday, he took my essay to his family's holiday reunion. He set it on one of the tables with a sticky note to mark the place. He did it because he wanted his family to know about what I do. Such bravery astounds me.