The Power of Passionate Living

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Fuck the power of positive thinking. Spirit is far superior to the brain.

“Show me how you fight.”

“Show me how you live.”

“Show me who the fuck you are!”

– Aaron Eckhart in “Bleed for This,” the new Ben Younger biopic based on the life of boxer, Vinny Pazienza.

Do you know about Vinny Pazienza? Or maybe you know him better as the Pazmanian devil?  Don’t feel bad if you’re drawing a blank. I had never even heard his name before I went to the screening of “Bleed for This” last week. Of course I didn’t know his name—I didn’t even know the World Series were presently happening until I called a friend last night and she was like, “can I call you back. I’m watching the World Series.” And I wondered who was playing but forgot to google it because I just really don’t care. So it’s no shock that I didn’t know about the life of a pro boxer from the 90’s.

Vinny Pazienza is known to have the greatest comeback in boxing history. In 1991, on the heels of great success, a grave car accident left him with a broken neck. Doctors gave him the unsettling news that he may never walk again and that the boxing ring was undoubtedly only a part of his history—not his future. He wouldn’t have it. Fueled by fierce determination to fight again, Pazienza passed on spinal fusion surgery and opted to be fit with a halo—a medical device screwed (literally) into his head for a few months so his upper body would remain entirely still while his bones mended. The halo was a risk; spinal fusion would guarantee a future that involved full mobility while the halo simultaneously put him at risk to never walk again BUT if it worked, he’d have a shot at the ring. His friends, family and doctors saw him as delusional—all were confident that he would never fight again. Ignoring the doctor’s orders, Vinny secretly trained while inside of the halo—an act that is incredibly dangerous considering that one misstep—one bump or fall— could push the screws through his skull impacting his brain. He had a shitload of passion and determination. He needed to fight, he needed back in the ring—nothing would deter him from getting well. Indeed, he returned to the ring within a year and won his first fight back. It was a title win… he got one of those big belts.

In the movie, the bloody  story is supplemented with inspiring music and montages, ramping up the audience to get busy living their own life with an equal amount of passion and perseverance. Music and montages can make the most horrific experiences seem almost desirable, can’t they? Life isn’t like that. I’m sure it was an incredibly challenging year for him—I’m sure it SUCKED. But  he had a goal, and he had a fervor and zeal that kept him moving toward that goal— that kept his cells bursting with energy. He was not “thinking positively,” his spirit was at work. And THAT gets my rocks off.

The ecstasy I felt watching Vinny conquer his injury reminded me of “Meru.” Do you know about Meru? Meru is a Himalayan mountain with a summit at 21,850 feet known to some as the new Everest—in fact, it’s technically a harder climb with its icy vertical faces. The first completed ascent was made in 2011 by a team of three pro- climbers—Jimmy Chin, Conrad Anker, and Renan Ozturk. It was their second attempt as a team.In 2008, the three gave it an honest go but they made the calculated decision to descend before triumph due to dangerous weather conditions. Chin, Anker, and Ozturk were determined to reach Meru’s summit to spite the painful conditions, and after a couple of years, they decided to play with mother nature at her most violent…again. This time, they had hard-earned knowledge of the mountain and they were set to succeed. But, five months before their planned ascent, Ozturk had a skiing accident so brutal that it has continued to be referred to as”near-fatal.” His vertebrae were shattered, he had a cranial fracture, and was facing a stark future.

Five months later, he climbed Meru with Chin and Anker and made summit—a task that verges on inhumane. Just in case climbing the mountain twice wasn’t enough, they also filmed and completed a beautiful documentary called—wait for it— Meru. Like Pazienza, Ozturk was determined, dedicated, and full of life- force-passion—nothing would stop him and nothing did. He had a full recovery and continues to climb today. How the fuck?  Thankfully, you don’t need to have a passion for fighitng or climbing a mountain. You don’t need to “live on the edge” to know what I’m talking about.

When I was first diagnosed with Lyme, I KNEW I would beat it. I wouldn’t live with it. I wouldn’t be a person that “managed symptoms.” I imagine it was the same way Pazienza and Ozturk looked  their fate dead in the eye and said “no.” I had no choice. I loved life too much to be inhibited by an illness. I was too determined to experience the abundant juice and zest. I refused to suck on a dry orange. But then I got sicker, and it got scarier, and I got more and more beaten down and worried that maybe I didn’t have what I needed to beat it. And in those moments, I needed to remember two things. I needed to remember that *some things* are beyond my control. Let me be very clear. I know people who were not as lucky as Ozturk and Pazienza.  I know the people who are stuck in wheelchairs for life because of freak accidents. People that are not actively choosing to put themselves in danger, die or end up paralyzed. It’s “unfair” and I am in no way suggesting that if those friends of mine had a little more determination and passion, they would reverse their condition. NOPE. I believe that certain things are beyond our control. I’m not a monster. I needed to have compassion for myself and my reality BUT I also needed to remember the stories that prove the impossible IS possible. Lyme IS curable. I needed to remember that healing could happen even when the doctor (a human being with an MD that makes mistakes all of the time) swears it can’t. I needed to see the people who were hit with the “irreversible” obstacles, REVERSE them. And that includes all of the people who are in a wheelchair AND living their best lives. In fact, that’s even fucking cooler.

About one year into my illness, I was crying on the phone with a friend— a friend who had a complete recovery from Lyme. Crying about how sick I felt, about how lost and alone I was, about how weak I was, how ugly and depressed I had become, and how completely terrified I was. I was pacing back and forth in my bedroom fueled by anxiety. She wouldn’t listen to my complaints or my symptoms. She kept redirecting my attention to my heart. “You need to get in touch with the most powerful part of yourself. Think back and remember a time where you felt the most powerful. Think about how you felt before you got on stage for the first time or something..I’m sure you have something.” I stopped pacing. I did.I felt a surge of energy boil in my core and overflow into the rest of my cells—my fire.

I was in the fourth grade. I was uncool, becoming more timid by the day, and a complete liar in an effort to make friends. I felt more and more ashamed of who I was on a daily basis. Was it my father’s abuse catching up to me, was it the school I was in, the cruel kids I was surrounded by? How had I gone from an entirely confident and optimistic kid to one that profusely sweat and blushed with embarrassment at the sight of herself? I sat upright in the school auditorium waiting for my name to be called: I was signed up to perform for the Storytelling contest that day in front of my whole grade. I had been practicing, “The Three Billy Goats Gruff” with my mother, and I felt READY. I didn’t know I wanted to be an actor yet. Looking back, I don’t know why I was so excited, so ready, so talented. I just was. The teacher in charge called my name and I walked confidently up to stage. I was handed a microphone, I turned on my heels to look out at my peers and something happened. They couldn’t touch me. I was free. I was lit up and ready to explode. And  I did. I was brilliant and I knew it. I held the audience captive—even the girls who would have loved to hate me— they couldn’t. I sparkled through my last line and figuratively dropped the fucking mic. I wasn’t surprised that I won—I knew I would. THAT power—the kind I had before my brain knew *too much* about life.

I tapped into the power I felt when I auditioned for Fiorello H. LaGuardia High School—the steadfast confidence and the surety that I WOULD get accepted. I was 13 and the audition process was a day long—performing  monologues, improv,  interviews, memorization tests. I walked into one interview room that had wall-to-wall mirrors in it, and I eyed myself sweeping across the floor. My back was straight, my heart was full, and I was being PULLED forward. I wasn’t pushing or forcing. I was letting passion carry me.  I did get accepted and within one year everything took a nose dive. My brain became too active, my father started using drugs, I was distracted by boys, I hated myself,  and self-medicating was the only solution. Brene Brown says we can’t selectively numb. We can’t. As I numbed my dark thoughts, I also numbed all of my passion until I was left empty.

By 19 years old,  I had cleaned up my act and started thawing out. My passionate light was burning again and melting away all of the icy stuff, but I never fully recovered. I still knew too much—I still thought too much. I used my brain to outsmart my humanity forgetting that while my heart might be where the scary feelings are, it’s also where my power is. When I got sick, I needed my spirit more than ever. I needed to get out of my own way, shut the thoughts down. I needed to tap into the part of me that shouted  “I AM CAPABLE OF ANYTHING. I’VE GOT THIS.” I started closing my eyes and remembering that pure feeling in my body and every time I tapped into that same power I felt at 9 and 13, I felt brighter and lighter and stronger and way more capable of accessing full health. It’s no easy feat when you can barely find the energy to get out of bed, let alone the PASSION to get well, but if I could just tap into it every now and then, if I could just find  the surge to keep going then I’d keep going and slowly but surely… I went.

I love being alive. There is so much sweetness, so much power in this life and I want IN. I want in. I use that same passion, the same drive, the same need that Ozturk used to get up Meru and that Pazienza used to get in the ring, to experience this life free from illness. The same fire I used to mount stage at nine years old, and the same fire that fueled my admission into LaGuardia is what keeps me going—I am determined to live my best life. While I am about 1,000 times better than I was, I am not always free from illness and pain (and I highly doubt that Ozturk and Pazienza are free from pain). I woke up today exhausted, with pain in my joints and sore feet. I’m not going to run a marathon today (or ever because I have no desire to), I’m not even going to do yoga today. But I have two choices: To obsess over my pain and my fatigue, beating myself into a deeper darkness, OR to take a little trip into my lively spirit and let it do the steering. I got out of bed, I drank a green juice, and I got to the coffee shop to do some writing. I’m in warrior training. It’s more hardcore than surviving Meru or getting my nose broken for some big old belt. I’m in training for mind, body, spirit thriving and  thinking has nothing to do with it. It’s pure fucking spirit. It’s heart. And all of us have it.

With fun!

Jackie

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When War Makes Art

ON THE BENEFITS OF STAYING CREATIVE THROUGH CHRONIC ILLNESS

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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. 

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“Diagnosed with AIDS in 1986, Mapplethorpe faced his plight with courage and chose to work more ardently than ever…” 

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.

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Self-portrait: one sick day in late 2015

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….”

HYSTERICAL TEARS

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.

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That day, early 2015

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.

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Chosen Family Portrait: Thanksgiving 2015

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,

Jackie

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