at least...

there is no good reason for this picture of me as a happy kid in flippers. still, here it is. at least you know what is going on... no I don't. This is supposedly a kind of ALS but no one knows the etiology, the mechanism or the cure for ALS. And Progressive Muscle Atrophy is even more rare, so even less studied. 

at least now you know you weren't crazy... I didn't think I was crazy. Did you?

at least now your symptoms make sense... yes, that's a little closer but, as David Byrne said, Stop Making Sense.

Diagnosis does not always confer coherence. In fact, in my experience it rarely does. It's an effort to put a boundary around things that always bleed into each other. But the intersectionality of the body does not succumb to a dose of diagnosis. 

Never mind that, what I really want to talk about is how these comments are efforts to make someone feel better. Is it me? I don't think so. 

I did this the other day, with a worker in my building, someone I like very much. He saw me coming in from the cold and asked me what I was doing out there. I giggled at the embedded praise; indeed I am a warrior. Then I realized he had been out shoveling and doling salt and carrying garbage, all so I don't have to. And that he had to commute by three buses from Harlem. So I made a sort of commiserating acknowledgement and he confirmed how awful it is. And I said: Well at least...

And then I went mute. Nothing followed. I couldn't think of anything that would make it acceptable, so I just stood there awkwardly. We laughed. I said it sucked, and got on the elevator to my cozy apartment. It still troubles me.

Here is Claudia Rankine in Just Us:

For some of us, and I include myself here, remaining in the quotidian of disturbance is our way of staying honest until another strategy offers a new pathway, an as-yet-unimagined pathway that allows existing structures to stop replicating.

My Zen masters would call it don't know mind. It's not easy to hover there but I think it is the kindest thing we can do until we know what to do. 

The lump in my knee and the big bruise turned out to be a baker's cyst, a result of a massive autoimmune inflammatory response to Vaccine #1. I really fear that second dose, not sure I should get it. But I'm glad to report I'm finally feeling better, two weeks later. Life feels worth it again. Music and snow and sorting my life and binging on The Avengers. 

Thank you everyone for well wishing. 

February 19, 2021