Last night reading the final pages of Esmé Weijun Wang’s The Collected Schizophrenias prickling hives flourish across four locations on my body — familiar itch around the periphery of my imagination. Earlier skin crawl because of rising tensions in the nearby flying fox colony — I stand up to leave because I cannot stand it — their wingspan broader than my arms (?) what could they do to me so easily. I check for my keys four times, five, where, still there. What happens when I reach the fucking intersection.
After a long vacation my madness returned home again last year. I had nearly forgotten its face and voice as I have forgotten every face and voice of the past. Of course I could do nothing but to welcome it back in, lay the table, make the bed, appease my ultimate guest. I had a virtual consultation with a psychiatrist recommended by my psychotherapist who after ninety minutes decided my greatest issue was fatigue. At that point I had spent two weeks with barely any sleep unable to even blink for fear of falling. Thoughts shuttled through me faster than I could keep up with — when usually and infused with physical discomfort my thinking is slow, smooth, muted. Familiar itch around the periphery. Insects crawl beneath my skin. Something in my ear, other ear, other ear. Sound of signals from otherworld or else cerebrospinal fluid swishing around in the back of my head. I Promise it’s there, I saw it on Reddit, other people can hear it too.
For all of life the medical system has failed me. The rheumatologist I most recently met prescribed two basic meds I have already tried and have bad reactions to multiple times before. When I asked for alternatives she suggested I get CBT. Ok ok. It is possibly “all in my head” my pain a delusion I have courted for nearly half a decade. Although the greater delusion occurs when momentarily I feel myself free of pain. I think: Did it happen is it over now did I cross the invisible wall. Then I take another step and am jolted alive by it.
Wang, along with schizoaffective disorder, is also diagnosed with chronic Lyme disease and dysautonomia. Reading the book I cry when I read about her adjusting her image to meet the doctor. Yes to tshirt no to pencil skirt. Yes to lipstick. Selling off all the clothes that will mean that she “looks” not sick enough / too sick, all that’s left after her yard sale is a red (?) sweater. Her boyfriend says: But you love that sweater! Who is this “you”. She throws it away.
In preparation for doctor visits I worry about my image constantly. I love to find justifications for this obsession. I asked two months ago on the Dysautonomia India Whatsapp group how to dress to be taken seriously. Nobody answered. OK ok. I found a similar retelling in Meghan O’Rourke’s The Invisible Kingdom: Reimagining Chronic Illness, another item on my FOR list. I am not sure if it is possible to be “taken seriously” but I try anyway like Wang and O’Rourke and countless others it’s the one thing we can “control”. I would never walk into a doctor’s office with my beloved antennas. I try even not to show my tattoos. My holistic medicine doctor has seen them unfortunately she keeps wanting to prod me with needles. Many years ago a psychiatrist I visited told me I was too beautiful to be insane but diagnosed me with bipolar disorder anyway. I was dressed in all black with dark eyeliner and my long hair held together by a sharp metal object. The next time I went to her she showed me a cutting from a newspaper about artists with bipolar disorder for inspiration. All of them had killed themselves. Consider me inspired.
Of course it is bound to fail this attempt and yet I continue thrashing about like a hurt bird against specialist after specialist for something, anything. I don’t take it to heart when they reach the end of their patience with me, it’s alright, I forgive them. It’s like what Wang says in the beginning of her book:
In these investigations of why and how, I am hoping to uncover an origin story. Pan Gu the giant slept in an egg-shaped cloud; once released, he formed the world with his blood, bones, and flesh. God said, “Let there be light.” Ymir was fed by a cow who came from ice. Because How did this come to be? is another way of asking, Why did this happen?, which is another way of asking, What do I do now? But what on earth do I do now?
What do I do. What else do I do. I look up things like “uses of forward slash” when I forget. I accept the blush of paranoia when I touch any screen. I sit when I cannot stand and stand when I cannot sit. I try to teach myself how to make friends by reviewing in excruciating detail every single interaction I have and feel a sense of deep relief when I respond in a way that makes sense in context. I decorate my dreams with scenes of war that are happening real time real life.
I try to write another book. In this one I consider what it means for me to share a pronoun with an alter ego: Ban. What if we are huddled inside box brackets together. Or if the box brackets are a bed then snuggled on top together. Who is this “I” who doesn’t mind sharing space like that.
To set the mood for this book I absorb myself in dense autobiography.
I read Barthes’ Mourning Diary and am struck only by a single sentence: I limp along through my mourning. To me it is perfect.
I read Ernaux’s Getting Lost which makes me feel ill with embarrassment.
I read Cixous’ Love Itself in the Letter Box which floods me with envy imagine having so many letters written to you that to think you have lost them feels like a death.
I read Hedva’s How to Tell When We Will Die: On Pain, Disability, and Doom which for some reason doesn’t touch me too deep although I am not sure what I expected.
I am most of all and perhaps only disturbed by Wang’s book which ties some knot in me. Her prose is sometimes unclear her ideas spin whirlpool in short paragraphs. There is a sense of push and pull that feels too close. I am glad to end it and hope that the exquisite torture of my past four nights of dreamtime ends with it.
Taking inventory of the kinds of pain my body has invented and clung to roots me back into me when I begin to detach from this plane. Besides that I indulge in easy delights. Walk by the lake every sun set from where I send a faithful photo to my friend. Text erratically. Scratch the heads of my cats and dog. Sleep on my side. Relisten to all the Bjork albums to rattle something loose in me, something of “youth”, like a wobbly tooth. Kiss my love’s perfect forehead. It wouldn’t do me good to miss these things whatever cost they come at.
A poem to end with images I love forever:
Untitled #9, 1995
by Victoria Chang
After Agnes Martin
Agnes only had nine years to live. The angels must have begun to hover around her canvas like monkeys. This canvas has nine white thin strips between the red and blue ones. I’ve spent my life thinking about the blue ones, thinking they were the future. But the future was red all along. I sense something is ending but I’m not sure what. Maybe it’s the future. This morning, I looked at a large spiderweb above my car. When I returned 10 minutes later, the weaver was gone, the web dismantled, but my hands were still open. Maybe a life doesn’t matter so much as the feeling it leaves behind, whether anyone receives the feeling or not. Maybe our goal is to spend all the light. Since none of us asked to be born.
There’s infinite ways to find out what happens next. Let’s go spend all the light
xoxo
💓💓💓💓💓💓