Why Sylvie Believes Creativity Means Choosing Curiosity Above Habit: On Being Fluid, Vulnerable, and Raw in Her Art + Fight Against Lyme Disease
This my friends, is Sylvie
Swallowed up by the golden light of the aspen trees, hands moving swiftly from paint to paper to water and back again, eyes fixated on the colors before her, The same colors that she uses to make sense of migraines so fierce that swallow up her entire being. With each stroke Sylvie is better able to understand the chaos that has consumed her for far too long; sitting close to her doubt while finding a way fully embrace the idea that, yes, yes I am an artist.
From the unspeakable pain, to the ambulance rides, solo camping trips, 4am sketch book sessions, and vulnerability hangovers (thank you for this saying), Sylvie has shown us that though there is no one size fits all, or guidebook that gives you a step by step on how to make it through years of fighting a chronic illness, there is always going to be someone else that can relate, rather, a community to lean on, as well as every opportunity to discover your own spark.
Your own art.
Your own way of sharing your story, however that looks for you.
So, without taking up a second more of your time, this is her story...
It's 9pm on a Thursday and I am swaying and clapping and doing the chicken dance with a group of strangers. My awkwardness is melting, a smile pulling at the side of my mouth. Mostly I am thoroughly captivated by the leader. He’s a magical man who might have been a preacher in another life so I listen when mid lesson he stops and exclaims, “You don’t sing to make pretty music, you sing to feel the music. You sing to express your joy and sorrow. You sing as a release valve. You sing with your whole body.”
I am surprised by the poignancy of his words, surprised when I wake up the next morning still holding tight to them. And I think, yes, that is why I paint my pain. Expression creates health and connection. Expressive Arts helps us survive the ups and downs of this human life.
As you probably know if you’re reading this, this Lyme life in particular is not easy to survive. My Lyme chapter has been a wild ride: on an ambulance, in my beat up car, up a few mountains. From Boston to Boulder the immensity of my journey has been literal but also deeply emotional. I think I’m ready to tell you about it because I’m finding that singing, sharing, expressing, helps.
I hope, in some small way, hearing it helps you too.
Last week I was back visiting Boston and wandering the streets where, just five years ago, I used to work and live “pre-lyme”. As I walked I could feel the ghost of the “healthy” but over-worked Sylvie floating along beside me. Around me were reminders of the last moments of summer, when health was just part of the backdrop, lyme still in the wings. This was the place that my two bodies diverged in a concrete wood and my path changed surprisingly and irrevocably.
For a long time I was pissed about that pivot point that I didn’t get to choose. My career disappeared, my body became a battleground, and I despaired for the future. In rebellion I clung to every choice I felt I could make. I chose to starve myself, masking anorexia with illness. I chose to isolate from my friends “who didn’t get it”. Instead I kept company with anger and depression, cultivating a new intimacy with suicidal thoughts.
It's a hero’s journey, the one I walked out of that dark place. Synchronicities blessed me along that path, that path that landed me in a place I love, with people I am inspired by, in a masters program I adore. But that journey is a story for another time.
The one I want to tell starts, on Christmas eve ironically, with a relapse. I woke up in the night with a pelvic infection. It truly was that sudden. Worse, it was the type no one understood. The type where they call different doctors in to consult. I sat in the room as well-intentioned doctors marveled at the confusing aspects of my case and then gritted my teeth as they gave me shots in the butt. It was school vacation and alone in my house I was petrified. I don’t remember much, but somehow I chose to get out my art supplies and paint myself: hot water bottle and all.
Painting was a short reprieve from the pain. The intensity didn’t disappear but I had something to DO with my fear and sadness and hurt. Since then I have turned to my art as often as I can. Up at 4am sleepless, I painted instead of laying in bed, frustrated. I flipped open my sketchbook when I was lonely on a solo camping trip and when I was stir crazy with a migraine.
To me, creativity is choosing curiosity above habit.
I can resist my migraine or I can try to imagine the intricacies of its color and scope. I can be frustrated by another day in bed or I can find a way to make it pleasurable. And true creativity, like true singing, comes from the heart. When I paint, I start with my face in the mirror but I also paint my vulnerability, my pain, the unspeakable. And sharing my heart laid out on the page in colors has became a catharsis I couldn’t have imagined.
A few months ago, encouraged by a friend, I started an Instagram to share my art. On my first post I wrote “This is a part of me so often hidden and unseen and I am ready to feel less alone. I am also ready to take myself seriously as an artist. I hope, if you choose to follow along with me on instagram (@inspirochete) that this is also for you.
That you might be inspired to share your own story or that these posts might help you to care and love for someone in your life with chronic illness with a little more clarity and compassion.”
Amazingly social media, which I used to scorn for “disconnecting our youth”, has helped me to connect to a community I didn’t know existed. I am so grateful for More Than Lyme and for the other people I don’t know who have reached out and shared their own stories with kindness. Most importantly, in my life, it has helped me to feel seen by those around me who I claimed could never “get” my illness. I’m an introvert baring my soul to my local barista, my best friends, and my colleagues. But, hearing how I moved someone or opened their eyes, has made the vulnerability hangovers completely worth it.
In the beginning I blamed Lyme for disconnecting me from people and numbing my vitality and creativity. But I don’t quite think that’s true. It shook me out of my routine. It robbed me of the habits and lifestyles I took for granted, long enough to challenge me to make the most of my lifetime. It isn’t enough for me to live just because that’s what you do or to sing just because it’s choir night. Lyme has, ironically, taught me that life is short and unpredictable. If I’m going to be here I’m going to be vulnerable and bold and try to see color in even the greyest days.
I’m not trying telling you what to do or to make it sound like I have it all figured out. I don’t and there is enough advice giving out there in the chronic illness world. Besides, we are all meant to imbibe our lives with creativity and zest in our own ways. I merely am trying to say that I hope your find yours in spite of, or because of, Lyme.
Trying to say that, if you want to open yourself to the spectrum of colors and beauty within and behind the pain, I am here with you.
Interested in sharing your story?