Dawn. Sun rise floats through the window slats of my shack, the little EI-safe house in the back of the queer collective house I inhabit. Some days, I will rise now. Some days I will hit the snooze alarm for three hours. I will turn over and over in my big bed. I will shift. I will get up oh, so slowly. How damp is it out, how bad is my pain, how shaky is my balance and my cognitive ability today?
Yet another fibro morning. Dawn creeps past my eyelids and I shove her away. Not yet! My fatigue- the deep fatigue of chronic illness, untouched by days and weeks of good sleep, not the fatigue of a night staying up too late- has not been touched today. I turn over and over. I drift back down to sleep. My life is bookended by library books, vibrator, and baths. Something more than simple self care, and something other than a life of a lazy, privileged girl. It is a crip life, a chronically ill life. It is a life of dreamtime.
I am a chronically ill, disabled writer. I am a queer woman of color writer. I have a shelf full of anthologies my words are in. I have been able to pursue the path of red and black ink.
I am a queer woman of color writer. I am a chronically ill woman.
My entire adult life has been marked by illness. Its hard for me to tell when the pain, butterfly balance, fatigue and immune transparency I name as fibromyalgia really started. A childhood filled with abuse, terror and a need to sleep as much as possible bleeds into a chronically tired yet overacheiving college years, bleeds into the early 20s when I walked back into my incest memories, got sick and spent a lot of time on my futon, struggling with fatigue, pain and shakiness.
Fibromyalgia is a name I choose for the constellation of repeating cycles of fatigue, muscle pain that does not have an organic source, immune system meltdowns, shakiness, balance problems and cognitive delay that hit me when I am stressed or doused with chemicals. Yoga, a regular bedtime, flextime, herbs, quitting smoking, kale and protein and quinoa all helped but there is no cure for this body. This is my body. This syndrome is new/old and ongoing, unfolding. It changes as we find new ways to think about/ see trauma, our bodies, embodiment, environmental racism, and sickness.
Chronic illness sucks. But, oh, there is the secret bliss of bed! Chronic illness may not have made me a writer, but it illuminates my writing life. I can't work a 9-5 - the times I tried left me winded in bed after three days- but bed time means lots of dreamtime. Sometimes it's low-quality dreamtime- dreamtime where I am zonked on a half a Soma, watching Caprica on Sidereel, using my vibrator and soaking in hot baths with laying on a big ice pack to manage my pain. But whether it is high or low quality dreamtime, being a sick girl means I have more dreamtime than most 9-5ers or movement organizers could ever dream of!
It is so difficult to write both of what sucks about disability- the pain, the oppression, the impairment- and the joy of this body at the time. The joy of this is body comes from crip community and interdependence, but most of all, of the hard beauty of this life, built around all the time I must spend resting. The bed is the nepantla place of opening.
Capitalism says that disabled, tired bodies that spend too much time in bed are useless. Anyone who cannot labor to create wealth for owners is useless to capitalism. That's why social programs are cut, why Hitler referred to us as “useless eaters”- we often are not able to be fast, assembly line workers who produce wealth for someone else. Gloria, capitalism said our bodies were useless. We snuck through the hole in our bed to the sky to write about it.
I joke that my bed, heaped with cushions, is my office, my world headquarters. I lie it in thinking of all my other crip poet friends who spend most of their days in bed too. Draped in pillows, red and plum sheets, surrounded by good art to look at, curtained by plum sari fabric. this is my place of power, the fulcrum, place everything emerges from.
Throughout her creative life, Gloria wrote about her creative time as dream time, crazy time. She wrote about the spiritual process of going in and down, shedding skin as she wrote.
Gloria, we meet in bed. You never said you were disabled, that I can find, every inch of evidence you left resisted that label. But whatever you felt about that world, this is where you dreamed and lived too. This place of bodily difference, a tired body that comes in pain and suffering, that allows us to work part time weird jobs, to rest and to fly.
1938: Gloria is born in Hargill, Texas. At three months, her mother sees tiny pink dots of menstrual blood on her diaper and freaks the fuck out. The doctor says “Don't worry, she's a throwback to the eskimo- eskimo girls get their periods early.” Is she intersex? Would she call herself that now? She calls herself jota, mita y mita, half and half, the way lesbians are called in South Texas. Her breasts develop at 8, there is a secret, a folded rag pinned to her underwear, in grade school, here breasts bound down tight with bandages by her mother. “Keep your legs shut, Prieta.” In her twenties and thirties, fibroids and 104 degree fevers rock her body monthly. In her 40s, she develops diabetes. During the week of May 15, 2004, Gloria Evangalista Anzaldua transitions to the ancestors/died of complications related to diabetes. She is 61.
A quote from Borderlands: “It is dark and damp and has been raining all day. i love days like this. as i lie in bed i am able to dive inward. perhaps today i will write from the deep core.”
speaking in tongues: on being a third world woman writer, 169
She writes while other people sleep.. she writes of getting up, sitting down, looking for, and always, the writing.” the path of red and black ink."
Gloria, the written record I have access to is often silent about how sick you were, how much those knife like fibroid pains, those energy drops from diabetes that stole your life early, affected your life. But on the record is how you stole dreamtime. Stole time to write and dream. You stayed up all night, slept all day. You joked about how you would do anything, anything to avoid the writing- clean house, make nopalitos, take a bath, burn candles. But you knew the writing was always there, waiting, your constant lover and companion. The toad inside that makes poems opens to you. You chose writing over lovers, over others. You wrote of being a bridge, drawbridge, sandbar or island as a queer woman of color- a bridge connecting disparate communities, an island when the burnout and bullshit of that position made you need to take a break- identifying finally as a sandbar, a natural formation that could be connected or isolated as the tides turned.
In your writing of this concept, I see echoes of disability. Disabled bodies are natural. We are also unpredictable, as nature is. We do not submit well to clock time or capitalist ablist white supremacy under its present form. Queer people of color who are bridges reach a moment where we say, enough, and retreat. My queer woman of color chronically ill body has its own schedule. Like the tides of our bodies- our sick, in pain, in less pain bodies that resist a boxed-in life that an ablist world demands.
Queer people of color never say we are disabled if we have any choice about it. We come from famillies who believe in being tough, in sucking it up. We can't afford to take days off work. We do not want any more identities than we already have to wrestle with. Our bodies already seen as tough, monster, angry, seductive, incompetent- how can we admit weakness, vulnerability, interdependence and we still keep our jobs, our perch on the “thin edge of barbwire” we live on? Why would we join crips in the mainstream disability rights movement dominated by white people? What would we get out of it?
The question I ask is: How do we claim this body broken beautiful as not a liability but a gift? To know that interdependence is what has saved us time and time again- as queers and trans people, people of color, women, broke folks. how my lovers and friends help each other survive- passing $20 back and forth across the movement, driving me to groceries when I can't make it down the stairs. How do we say that my hurting body in bed sucks and is also a beautiful ability to write for hours because I can't hold down a 9-5 even if I wanted to?
And part of the beauty is our access dream time. time for the stories to grow. time that is not logical, rational, clock time, punch the clock time. At 35, I am surrounded by people who say, how do you have time to write those poems and stories, co-create those projects? how are you so productive? I am so productive because when my gut tells me to take a day off, i do. I lie. say i have a family emergency. Sometimes, often, my life is full of the work of survival and I dream. and I do what I am supposed to do. When I was a kid I knew that I was supposed to grow up and work a 9-5 job but i didn't ever understand quite how it would happen. I follow the words out my belly. I give in to the bed, to the dreams, to the long long sleeps and times curled up. the words curl close to me because of it. How can i say that being chronically ill is a gift? That maybe i would not have become a writer if i had not been too sick and tired to work? That I had to figure something else out? That my illness opens the door to write be in the nepantla place. takes me to the path of red and blank ink. to where the stories go.
Everything I write here would be useless if I didn't talk about how we struggle to live. This story is not just the secret bliss of bed- it is about the worry of how to survive economically while we do so. Every kind of crip knows this struggle. Because while we may enjoy the secret bliss of bed, we also all live in a panic about how we are going to get cash from capitalism to feed and clothe ourselves. I grew up straddling the line of upper working class/lower middle class. When I got first got very sick, I lived poor and struggling for a big chunk of years- isolated in abusive relationship, off the books in another country. Fifteen to twenty bucks a week food budget, walking everywhere when I was able to walk, paying the bus with the penny jar, packing the Good Food Box once a month for a free meal and a free box of veggies. Handing out flyers on the street for some cash, resting after. With a work visa came the four hour shifts my body could handle, doing phone canvassing and fundraising, cleaning houses at the eco-friendly cleaning place. Then came the better paid, twelve to fifteen hour a week feminist crisis counseling job. I did occasional workshop gigs, began to apply for and get arts grants. My college degree, my ability to pass as nondisabled and ability to hustle all helped me gradually come out of that hole, figuring out some ways to live kind of okay on part time and flexible work. My experience of that bliss is specific to a disabled body that struggles with impairment and also has some ability to write, think, walk, talk, be in the world. and most of all, to possess energy. My energy level came back, beating butterfly wings, from the weeks and months and years of needing to rest for a day after walking up a flight of stairs. That is the currency
The relatively more stable Canadian arts grant and OHIP infrastructure gave me precious time to rest and heal. It was possible to get grant money, a chunk, to live off of- easily, your friends had all done it, and they weren't super privileged folks. You could have that couple thousand in the bank and work small gigs that allowed for the week or two of flares. Moving back to the States was one of the scariest things I've done. It meant giving up free nurse practitioner and emergency room visits and the existence of any kind of arts and health infrastructure. When folks ask me why I moved to Canada at 22, it is easier for me to talk about needing to put a national border between myself and my family, about the Sri Lankan and radical South Asian community, about other mixed kids, than to talk about how I looked at Toronto, saw its health care and grants, jobs that were over $5 or $8 an hour as people I knew were making in new york in the mid 90s, its backyard gardens, and knew my sick self would be able to survive there.
In recent years, depending on where I live and the state of the economy, I've stitched together arts grants, gig money, money from writing articles, teaching gigs, part-time badly paid bookstore work, good college gig money, contract work with nonprofits during good times. I teach pussy school- teaching med students how to give pelvic and breast exams, part time occasional work that is high paid for short hours, when it comes. During tight times, I've read tarot cards and shrunk my budget back to the minimal one I can survive on. I've stressed out. All of us struggle to find some way to survive- whether it's SSI or disability, depending on partners or family we may or may not have the greatest relationships with, working off the books or in street economies, trying to find nonprofit, arts or other workplaces that will get it, getting state funding for our PCAs. Always I have worried about flying with no safety net but what community and privilege and access can cobble together for me. Sometimes I have worried and realized that non-crip QTPOC friends don't get it- they see the part time gigs as insane luxury, my sleepy body as lazy and spoiled. The realities of capitalism are the bones under the bed.
Says Ana Louise Keating, “Although Anzaldúa had been living with diabetes for over a decade, many of her readers were unaware of the disease's ongoing, debilitating effects on her life. Even those of us who knew her well were shocked by her sudden death. As Kit Quan, one of Anzaldúa's oldest friends and writing comadres (in keeping with Anzaldúa's practice, I do not italicize the Spanish words in this essay) explains, "Gloria always told me that she was going to stick around for 20 more years. She struggled with diabetes and all its complications daily... but she was so well read on the disease... and worked so hard at managing her blood sugars that I believed we still had more time."
What did her friends see and not see?
If I say all this story, maybe no one will be surprised at my death. Maybe someone will know when I get really sick. Maybe I will have enough time. Maybe my sick, dreaming, flying, writing body will have enough people around it who recognize that place for its strength and weakness, too.
But when I roll over onto my pink t-shirt fabric sheets on another disabled woman of color artist day, feeling the bliss of the cotton on my sore body, when I sleep late and stay up late typing, I feel your body brushing me. We brush sick bodies that hurt and also fly. Our sickness a road out from the 9-5, trading labor for cash life. Our bodies can't work like that so they dream instead. Steal time for dreams, poetry, world changing, on that thin edge of barb wire. We dream a away through the teeth of the dragon of whitecapitalistpatriarchal amerika. Turn over, write another line. Poems flying in our teeth.
“"Caminante, no hay puentes, se hace puentes al andar. Voyager, there are no bridges, one builds them as one walks."”- Gloria Anzaldua.
Rest in power, love. Thank you.
as of september 2010, I'm committing to post one new piece a week (disability and travel may remix this intention.) all this work is shared under a Creative Commons license- credit if you share, no commercial use allowed.
This work by Leah Lakshmi Piepzna-Samarasinha is licensed under a Creative Commons Attribution-NonCommercial-NoDerivs 3.0 Unported License.