by Megan Moodie
This is what happens the first time I show up at your house with its beautiful matte-oak boards, its living-room without furniture, where we lie on the floor and talk about muscles and pains, about exhaustion, about where the heat and the chill rise in our digits and limbs each morning;
this is what happens when I show up at your house right around the time my meds are starting to wear off and I’m a little uncertain –because since the rapid onset of hemispheric dystonia in early 2020, just as the world was beginning to shelter-in-place and hiding became a legitimate life-choice in the grossly ableist world where we live (academia, California, everywhere), no one outside my closest immediate family has seen what I look like with half of my wiring on faulty, blinking circuitry and I don’t know how worrying the spectacle of my unruly body will be to a professional choreographer and dancer;
this is what happens when you so kindly, so quickly agree to help me document the neurological unruliness for a camera, and how a cheap, no-longer-under-patent medication, levodopa, brings the left hemisphere of my bodymind back online and gives me back speech, lessens the shrieking pain, and enables an ease of motion that allows me to do things I have not done for years – like drive a car and walk a mile – so that other women like me, women with Ehlers-Danlos Syndrome, who may have dystonia at rates as high as sixty per cent though there is not one medical article describing this connection, might also convince their doctors to let them trial levodopa;
this is what happens when I, who once took my former-dancer able-body utterly for granted but became, over the preceding decade, disabled by chronic pain, orthopedic chaos, and slow neuromuscular havoc so that I tried to (mostly) contend with my grief and embrace my cripple swagger and help others do the same by doing things like bringing you a string of howlite beads to wear around your wrist to absorb some of the loss, to help with the mourning, that necessarily arrived in your life with that virus in March 2020, which in a way never left you, so that you have now been Long Hauling for as long as anyone has been Long Hauling;
this is what happens when, with a choreographer’s keen attention, with complete and utter co-presence that you have cultivated in extraordinary transnational collaborations in South Asian dance and long history of thinking deeply about what it means to collaborate, you ask me to stand on one leg and raise the other and it turns out, to my surprise, that my “bad” left leg can actually hold my weight, it just won’t take my commands, even if I say out loud “lift up, leg,” and you say “You see, your leg is still doing things for you. It can hold you up. You just lack gestural control,” and I suddenly have a word – gestural – to describe the lack I feel but I also have an entirely new confidence because it suddenly seems unlikely that I could be easily knocked over, something I feared until that exact moment;
this is what happens when sometimes the motions my arm or my foot make are so funny, it’s inadvertently “Thriller”-time, we both have to sit down on the matte-oak floor because we’re laughing so hard;
this is what happens when after this first get-together you say “I know the dystonia makes you afraid, but I want you to know that to me it looks beautiful. It looks like dance” and we make the decision that one simple before-and-after advertisement for my un-medically-documented but highly effective treatment, one activist project, is not all that might arise when someone who is living with the Ehlers-Danlos Syndrome form of the human body and someone who is living with Long Covid get together to experiment at the edges of dystonia, when it is directed or sculpted, so we will keep doing it, get together again – and we do get together again, in other living rooms and other dance studios and every time I emerge with new understandings of my bodymind’s changed and changing potentialities;
this is what happens:
we queer the neurological exam, with its long history of the male gaze penetrating an objectified, individualized woman’s body in order to classify, diagnose, depersonalize
we embrace crip art and teach each other to reject the “everything happens for a reason” bullshit of the capitalist chronic illness medical-industrial complex at the same time that we think less often about our bodyminds as sites of loss and when the feeling of loss does overwhelm one of us, there is someone to call, to text, someone who will, undoubtedly, offer to make you a bowl of soup
we cocreate part of the thing we want to live in and study and make art with and from and invite others to join
we laugh so hard we cry, every. single. time. even if sometimes I’ve been crying until you make me laugh, which you delight in doing, especially when I’m trying to be serious.
Moodie bio and pic