In a 1984 Paris Review interview with the writer James Baldwin, he was asked whether he found it easier or more difficult to write out of anguish, specifically his utter despair after the death of Martin Luther King Jr.  Baldwin replied, “No one works better out of anguish at all; that’s an incredible literary conceit. I didn’t think I could write at all. I didn’t see any point to it. I was hurt…I can’t even talk about it. I didn’t know how to continue, didn’t see my way clear.” When I heard that this morning as I listened to the Paris Review podcast of the interview, it shot right through me, a kind of bolt of recognition and affirmation. When Sophie was diagnosed with infantile spasms nearly twenty-three years ago, she was not even three months old and I not quite thirty-two years, and it would be more than ten years before I’d write a single word about the experience despite the nearly twenty-seven years that I’d been writing almost daily. I’ve never been able to figure out why, nor to explain it — in fact, when I did start writing again, nothing irritated me more than the comment I received over and over that you must find such comfort in writing, that it must be so therapeutic.
I thought about it today as I brushed my teeth, the whir of the brush in my brain a kind of provocation for thought, willy-nilly. My parents left yesterday after spending a few days here with us for Thanksgiving. It was a lovely time — we seem to have figured out how to love one another despite our differences and perhaps because of them. My mother insisted a few times over the days she was here about a persimmon-colored blouse she wanted to buy me, something we’d both admired in a catalog, and I kept saying, no, I really don’t need that or want it, and she kept saying, yes, I want you to have it, it’s good to have nice things, but aside from letting her buy it for me because she wanted to and could, it occurred to me in my head, willy nilly, as I brushed my teeth this morning, after they’d left, that my perspective is profoundly different, that it’s not just that nothing material really matters having gone through such anguish over so many years, but that having gone through such anguish over so many years, everything else matters. Do you get that?
Last week, the In Home Supportive Services worker came to our home to do the annual check-up. She was Armenian (the largest population of people of Armenian descent live in Los Angeles), and at some point during the mind-numbing process of signing papers and answering inane questions about Sophie’s inabilities (I’m not saying disabilities because the questions are posed negatively), she looked into my eyes and said, Where are you from? and I told her that I had a Syrian grandfather, a Scotch English grandmother and two Italian grandparents. She nodded her head, said she saw it in my eyes and mentioned that Putin and Assad were together that day. I made a face. She asked, You don’t like Putin and Assad? I said, Ummm. No. She asked, Why? I said, Because they’re hideous people who have caused the deaths of millions of people. She said, Ah you would know, and I let it go, her perspective, as it was, focused on my very diluted ethnicity. I’m only telling you this, Reader, because that little exchange led to her telling me about her Christianity, about her worries as a mother to two grown sons, about her asking me whether I was happy and me replying that I was and her answering that I wasn’t because I had Sophie and no one could be happy with a child like that


Some of you out there will think that I should report her, that she was out of line, in the wrong line of work with such a perspective, but I only felt tired. 

It’ll make a good story, is what I thought, even as I calmly gave her mine.
Here it is. I wrote it down.

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A podcast about The Grit and Grace of Caregiving, hosted by me and Jason Lehmbeck.