Photo: Joanna C. Valente
Stephanie Athena Valente lives in Brooklyn, NY. Her published works include Hotel Ghost, waiting for the end of the world, and Little Fang (Bottlecap Press, 2015-2019). She has work included in Witch Craft Magazine, Maudlin House, and Cosmonauts Avenue. She is the associate editor at Yes, Poetry. Sometimes, she feels human. stephanievalente.com
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BY LISA MARIE BASILE
Body Ritual is Lisa Marie Basile's column about wellness, chronic illness and finding healing and autonomy in ritual. You can follow her on Instagram for more on this topic.
If you live with a chronic illness, or if you love someone who has one, you know the delicate balancing act it requires. Living on that liminal precipice, between doing just enough and doing too much, requires an almost spiritual focus. And it’s tiring. I know, as I have ankylosing spondylitis, a degenerative, incurable spinal disease.
Who we feel we are within our minds is not always what our bodies reflect. And sometimes, that very lack of reconciliation rewires us. We start to believe we cannot, are not, will not.
We can, we are, and we will embrace the wholeness of our limitations and our magic. It doesn’t matter if people want us to stay quiet, go away, or stop complaining. We have a right to explore what it means to experience life as we do.
Stigma, lack of education, and fear make it hard to exist in a body that exists on the margins. Sometimes all the noise and suffering keeps us at a distance from ourselves. We often are so tired from the pain or insomnia or anxiety that we smile and pretend everything is okay. We sometimes allow ourselves to be taken advantage of just so we can seem “normal.” We push the limits of our bodies and lose grip on our boundaries. Sometimes, we get through the day, and that’s it. Sometimes it’s hard to feel empowered, to feel enough, to feel that we can and are and will.
Recently I decided to go inward and empower myself to make time and space for my voice and needs as someone with chronic illness. Instead of trying to blend in or assure everyone that, “I’m fine, really,” I stared down into visit the abyss. I decided to take my time, for no reason but my own needs, and look my chronic illness in its eyes.
I cut through the noise and the stigma and the denial. My body, alight and in focus.
To do this, I made a list of chronic illness journal prompts and chose a beautiful journal strictly for these questions (or you may want to type these out or dictate your answers).
So, I wrote down several questions in my journal, and attempted to answer them. At times I answered one a day. Sometimes I answered several in one go. The important thing is that you take the time to be honest with yourself.
What I learned from answering the below questions astonished me; I was able to advocate better for my needs, recognize and make space for joy and gratitude, and find the parts of myself, like glass shards, I thought I’d lost. I didn’t lose them, it turns out. They simply changed form.
Who am I without my chronic illness?
Who am I with my chronic illness?
How did I change when I was diagnosed?
How did I not change when diagnosed?
How is my pain level today? How is my fatigue?
Are my basic needs met? How can I facilitate this?
What positive thing have I learned about myself while actively experiencing symptoms or side effects?
What negative thing have I learned about myself while actively experiencing symptoms or side effects?
What do I do during periods of remission?
What do I do or feel when I’m in a flare-up?
Are there any ways at all to bridge the gap between feeling good and not feeling good?
How do others make me feel about my chronic illness?
Who understands my illness and supports me in my experience of it?
How can I help others understand my illness?
What do I not feel comfortable explaining about my illness?
Where are my boundaries?
Where can I be more receptive or open? Is it in receiving love? Is it in talking about my needs?
How do my finances play into my illness?
Are there areas in which I am privileged and thus, have gratitude?
Are there community resources or other resources I can tap into for help?
How does my race, gender, or educational background impact my experience of chronic illness?
How does my illness impact my job?
How does my illness impact my social and/or sex life?
Are there other intersecting issues that impact my chronic illness?
What do I love about my body?
What do I need to feel happy on a day to day basis?
What do I need to feel sustainably happy in the long term?
Among the things I need, which do I have?
What are three things I am thankful for right now, in this very instance?
If I am not happy, what is in my power to change that?
What work — no matter how seemingly ‘small’ — can I do to advocate for or contribute the wellness of others who may be suffering? Would this feel gratifying?
What gives me hope?
Lisa Marie Basile is a poet, essayist and editor living in New York City. She's the founding editor of Luna Luna Magazine, an editor at Ingram’s Little Infinite, and co-host for the podcast, AstroLushes. Most recently, she is the author of LIGHT MAGIC FOR DARK TIMES (Quarto Publishing/Fair Winds Press), a collection of practices and rituals for intentional and magical living, as well as a poetry collection, NYMPHOLEPSY . Her second book of nonfiction, WORDCRAFT, will be published by Quarto/Fair Winds Press in April 2020. It explores the use of writing as ritual and catharsis. Her essays and other work can be found in The New York Times, Chakrubs, Catapult, Narratively, Sabat Magazine, Refinery 29, Healthline, Entropy, Bust, Bustle, The Establishment, Hello Giggles, Ravishly, and more. She studied English and psychology as an undergraduate at Pace University, and received a Masters in writing from NYC’s The New School. Want to learn more? She’s been featured at Amy Poehler’s Smart Girls, HelloGiggles, The Cools, and more.
When I was in the first grade, my school began to pull me out of class twice a week to work with a resource teacher. Years later, when I asked my mother why that was, she told me it was because the school was concerned about my social skills because I was so shy and stoic and quiet. And while this bothers me now, the idea that a small brown girl would be pulled out of class to be taught how to socialize, I remember finding solace in those times with my resource teacher. I can’t recall her name, but I do remember she was a white woman with dark bobbed hair that wore the color red a lot.
Photo of Dolores Del Río via Women Reading
... a way to document my personal progress...
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