Visit with Tom

Tom had to lie down on his kitchen floor in the tiny box apartment- his medicines are wearing off.  His body is becoming more immobile by the minute. His mouth and hands are tremoring, his limbs are rigid. He can’t get up. Can’t lie down any longer either. It’s a struggle for survival. The sense of time goes away.
Exuding movement from my body instead of moving him might be the way to go. Ok, so I just start moving, dancing around him to the Donna Summer song coming out of the radio. Clapping my hands. Faking it until I feel it.
He is able to pick up on some of my rhythmic gestures and imitates them.

After a few minutes his body begins to defreeze and he miraculously rises to standing. We use the moment to sneak a Fred and Ginger twirl. “ I am Ginger, Melanie you are Fred, he says”. We spin, turn apart and together, in what appears to be a preparation for a big swing dance about to happen on the two feet wide kitchen stage. We ignore our bumping into the furniture that is enclosing us.
He does a crazy leaping move into my direction. I can catch him, thank goodness.
Then without much notice the high is over. He wants to keep dancing. His legs don’t. The momentary lightness in the room vanished.

He becomes quiet and serious. As if he was surrendering to go back into the depths of this swamp again. The facial features change quickly. Like a dying bird. The eyes half shut. Red. Teary. But also strangely serene looking. The other spirit has taken over his functions once more. Hijacked his movements for a while to maybe lend them to someone else.

This time I don’t try anything. He told me once if people could just be present with him when he can’t move, instead of trying to help, it would be much less painful for his body and mind. I shift my attention to the connections of symptoms, situation and feelings. Seeing it like a choreographed moment. Our bodies in this private environment, the pace, the rhythm of these constantly changing states and atmospheres, our personalities and personas in this scenario. I see beauty in the grotesque seeming physicality of the body in this neurological condition.
After a few eternal minutes his eyes are opening again, searching to focus. The nerves in the limbs start firing and produce some twitching and then slow moves. Life is shooting back into him. The dopamineric drug is kicking in. He gets excited. Begins to talk. This time a much slower, cycle the transformation becomes more visible.
A wave of relief is filling the air. He gets up to is sit on the chair. We laugh in relief as he crosses one leg over the other, in a theatrical gesture ‘Just like Fosse’.

We could go back to our original idea to watch a Marlene Dietrich movie together.
Tom is a video artist. An East Village icon. He is forty eight. His works are fascinating, dizzying, strange shorts, filled with images of found footage of love, bondage and morphing colors. He has lived, loved and transgressed the queer culture in the East Village since the 60’s.  Knows everything about the classics and the contemporaries. He is a well of stories, films and songs.
Our plans interrupted is the theme of our choreography every time I visit.
We chat, laugh, discuss art and hear a favorite song. We get ready to see a movie. Then one reality shifts to another. I usually notice the other force sneaking in some time before, when his gait becomes heavy. Then emotional movement in the room stagnates. The energy changes. Though I know the on- off cycle from my father’s symptoms I still get anxious. Every one is different, every time it kind of feels like a life or death situation. After a while, somehow the life force comes back, hope comes back, we dance. I am full of questions, admiration and gratitude.


Putting his earphones on, heading to the streets and publicly dancing himself out of his offs became become Tom’s daily dose of protest and self love.  He was famous in the neighborhood for his crazy moves and leather clad style.
We never got to see a full movie together. He died too soon.  But what we did get to watch together were his own short video works. A magical gift for me to have his ever-shifting energetic presence by my side as I witnessed the unchanged rebellious, curious and tender nature of his body of work.


dedicated to the late video artists Tom Chomont