ON THE BENEFITS OF STAYING CREATIVE THROUGH CHRONIC ILLNESS
Robert Mapplethorpe, a photographer from the 1970’s well-known for his erotic imagery, nude portraits, and self-portraits, battled AIDS for three years before he died in 1989. He was a fearless photographer, crossing boundaries to create breathtaking prints. I’ve always admired his work, but when I went to The Getty last week to see their Mapplethorpe exhibit, something entirely different stood out to me and inspired me. I am usually inspired by creative risks: vulnerability, boldness, and courage— Mapplethorpe’s photography is “right up my alley.” But, this time, I saw the self-portrait he took in 1988, the year before he died. A self-portrait conveying his resignation to illness and eventual death. I was captivated, moved, and inspired by his dedication to his art AND perfection of his art in the midst of terminal illness. It had such a profound effect on me. I imagine it’s had a similar effect on others —thank god he continued to create through illness, I kept thinking, what an impact that can have on the world.
I imagine Stephen Pressfield, the author of “The War of Art” — a book on overcoming resistance to your art and creating everyday no matter the “excuse” your mind tries to conjure— is out there applauding Robert Mapplethorpe and all of those like him. It’s a triumph and, in my opinion, creativity is indispensable while healing.
A couple of years ago, I felt like I was failing Mr. Pressfield, whose instruction I highly regard. I was incapable of showing up for my boiling creative life as I once did. I sobbed when I confronted my acting coaches with the truth I had been resisting: “I can’t show up for class anymore.” My ever-compassionate coach said something along the lines of, “yes, we know—you’re not up to this right now.” So, it was no secret and/or I wasn’t such a good actress after all. I was missing more classes than I was attending and when I did attend, I’d only last for about an hour before overwhelming fatigue set in and shameful tears bubbled in my eyes. I couldn’t participate in the same energetic, optimistic way I once had, and it was breaking my heart. It felt like Lyme disease was robbing me of my greatest joy —my sometimes only joy in life— my art. I came to a mild version of acceptance around Lyme taking trapeze, trampolining, hiking, dancing, late-night sugar-high-parties, karaoke, traveling, my general sense of adventure, and even the production of a short film I had written, but ACTING, TOO? NO FUCKING WAY.I officially had no space to run free leaving me feeling like a wild animal trapped inside my own body.
When I initially got sick, I was determined to hold onto myself — the self I had grown accustomed to, the labels I had attached to, the box I put myself in: actress, pretty, fun, adventurous, athletic, optimistic, smart, creative, go-getter, “badass motherfucking amazonian queen,” as Cheryl Strayed would say. I worked hard to be THAT specific person. In fact, I was JUST settling into my sense of security as that specific person, and I sure as hell wasn’t going to let Lyme disease get in the way of it. I closed my box and held onto to my precious traits, hoping the tornado of Lyme would just sort of pass me by. The tighter I gripped, the harder things got ripped from my grasp, and the more it hurt. Who was I without all of those labels? A blob, a 4th of July sparkler that was about to go out, a wimp, a bore, a snooze, unlovable, inconvenient, and on and on and on with the self-judgment illness has a way of invoking. Most things went pretty quickly, but my acting career was something I wouldn’t dare give up — I’d go into the eye of the storm with it. In an effort to fill the time that I used to fill with things like hiking, I decided to gorge myself into my career further and spent months wiring my first screenplay. We performed it in front of a crowd of 50, I wrote and rewrote and rewrote, we shot a trailer, and I started raising funds for the film, but, by that point, I was undeniably suffering on a daily basis and the stress of raising funds wasn’t helping. With much hesitation, I dropped it. I “gave up” and returned everyone’s funds. I was equally relieved and devastated. Ironically, 2014-2015 were the most financially lucrative of my acting career. I was making more money on acting than I ever had, but I was unable to enjoy a penny of it as it went right to supplements or acupuncture or an obscene fee to a mediocre doctor. It was also all very simple commercial work which left me feeling flavorless, vapid, and unimaginative. I needed to get my creative fulfillment from things like theater gigs, theatrical auditions, and class. My fatigue drove me away from each one of those things: first, my theater company, then my drive to audition, and eventually acting class… driving me right to my camera.
I had recently spoken to a woman about the concept of “baby steps” or “slow and steady,” a subject I was not really all that interested in prior to illness. Truth be told, I’m still not necessarily interested in it, I just happen to have a reference point now to how rewarding it is. She said, “I drew a self-portrait everyday for one year. I set my timer for ten minutes and drew. I never went over the ten minutes.” Being a person who feeds off of challenges —though I am getting pretty tired of “obstacles” — I jumped right on this idea of “one thing a day for 365 days.”
I pulled out my beautiful and barely used Leica D-Lux 6. AH, my Leica, the expensive camera I was going to “use all of the time,” resulting in a short bout of determination quickly followed by frustration and an impatience too unfettered to sit still and read the manual. I put it away in a dark drawer for “one day.” Of course, I assumed it would be “one day” like the day I had kids or something— not “one day” because I felt like a wild animal trapped inside of my body, suffering from Lyme disease and needed to remain creative “one day.” Would you believe me if I said that I’m grateful it was actually the latter? That I likely would have never committed to something like that if I wasn’t sick? That all I learned in the process was maybe worth it? I wouldn’t believe me either, but it’s true.
Initially, my “photo 365” project was simply an effort to stay plugged in to my creativity and a way to learn how to use every single button on the camera now that I had time to read the manual. I learned the lay of the camera pretty good, but that’s not really what I learned at all — I learned how to turn what was, up to that point, a bullshit experience that was robbing me of anything and everything I had ever worked for, into a meaningful and fulfilling creative ride. I learned how to use physical strife to my creative advantage, taking my power back. These exact words, written on this page, are a testament to that.
Taking a photo a day was strategic in many ways for me: Photography was something I always loved and had a natural eye for, and it was something that turned my brain off and forced me to focus on the present moment (in a very literal way, I kept my head UP). It was a low-impact-sport—something that on my worst days, I could even do from bed (MANY of my photos are self-portraits because I was too sick to leave the house) — and it gave me something, at the end of each day, to look at with pride. It was a challenge, a “distraction” from my brain which dropped me right into the present. The effect this had on my daily life was nothing short of fucking magic.
I was collapsing into the darkness one evening. I was already running late for therapy because I couldn’t deal with putting shoes on, and I was having an abandonment- issue- meltdown about Ian leaving me for the night. The dialogue was something like this:
Me; “I can’t get dressed. It’s too hard. Everything’s so hard. I hate my body, I hate my life….”
Ian: “it’s OK baby.”
Me: “It’s not OK. Nothing is OK in my body!!”
Ian: “You know what? Let’s take a photo. Have you taken one yet today”
Sniffle. sniffle. sniffle.
Me: “No, not yet. OK.”
Within minutes, I was focused on where to put my camera and smiling, even feeling a sense of freedom.
I had countless….COUNTLESS….experiences like that one. My mood, my outlook, could shift from bleak as fuck to an exhilarating great loopy bundle of optimism. My immune system was directly affected by the joy, I swear.
Chronic illness had felt entirely isolating until my little photography project busted that wall, too. I started taking photos of groups of friends, calling them “chosen family portraits.” Illness had left me feeling so inferior in groups of people: what did I have to offer, what did I have to talk about besides illness? When I started being the “girl with the camera” (nobody calls me that) who took awesome group photos that seemed to bring everyone joy, I felt like I added something. I had something to offer, a way to feel a part-of something instead of separate from everything.
I have not given up on acting; I think I’m a better actor than ever, but I also have my little photo project to thank for that as well. I wanted my camera to essentially keep me plugged into the creative part of myself so that I didn’t feel like I was a stranger to art when I was healthy enough to meet it again. When one of my best friends suggested I write and perform a one-woman show based on my experience with Lyme disease, I was ready for the task. I wasn’t ready to perform; I’m still not quite there, but I was ready to write, and that’s how this blog space came to be. And, today, what I love about my photos, is that I get to put them here. Every time I make a post, that photo that sits at the top is one of mine, and shit do I have fun choosing which one to use every Wednesday. The gifts of my little photo project seem endless.
So when my Mother and I visited the Robert Mapplethorpe exhibit last week, I was newly inspired to remain absolutely creative as I finish out this small part of my life’s journey. I know what it is to feel like I’m knocking on death’s door, like I’m just one step away from becoming a skeleton. To create something so stunning that captures the experience of a passing life and the terminal quality we all have, that is still affecting AND inspiring people like me decades later, well THAT is what I call making art out of war.THAT, is a true example of kicking resistance’s ass, Stephen Pressfield, wouldn’t you say?
I saw an old friend last weekend and I gave him the brief and brutal run-down of the last couple years. He was left baffled. “If you don’t mind me asking,” he said, “how the fuck have you been dealing with all of this?” The very first thought that surfaced in my brain was: I took photos, that’s how.
With fun and love,