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.

The deep and important work that goes into healing the trauma of illness is often ignored. Instead, we focus on the day to day needs. We keep our heads above the water — but the secret is that we must become the sea.

I remember one of the first days many years ago when I realized that my body wasn't working the way it was supposed to. I was doing something simple, something that should've been innate. . Climbing on a bike, I thought that my hips were off, almost as if I was completely out of alignment. The best example I can give is when your car's axle is off and it continuously steers toward the left or to the right. There was no center, no feeling of steadiness, almost as if I could split in half or split into thirds and each part of me would fall to pieces in different directions. . My #AnkylosingSpondylitis (an #autoimmune or immune-mediated, incurable, degenerative spinal disease) deeply affects my hips, which is pretty ironic because I spent many years hating them for being so wide. Because society. Because magazines. Sometimes I wonder if I poured all of my negative energy into my body, making myself sick, as if I casted a spell - but I *know* that that is not the case. . Regardless, I try to treat my body with love and respect these days - I love my hips -and I try to see those situations in which I cannot do something or cannot do something comfortably, with compassion. I am always in the pool, where I feel I am larger than life, able to move fluidly with the lower impact, made stronger by water's sneaky resistance. But there are days when I want to crawl into bed and hide forever. Sometimes I win, sometimes it does. It's a process. It is my process. . Movement is integral to my life, it is ritual. It is a song. It is the ONLY thing keeping my spine from fusing; I am literally running for my life. But it can also be painful. . So sometimes I use devices and tools to make my life a little bit easier, and I wrote all about that for @healthline - check it out in my bio. https://bit.ly/2Hw5O2q

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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.

Chronic Illness Journal Prompts

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?

Also read:

BODY RITUAL: 12 VERY REAL THINGS I LEARNED ABOUT CHRONIC ILLNESS

BODY RITUAL: GRATITUDE MAGIC

AT THE INTERSECTION OF CHRONIC ILLNESS & RITUAL

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.