Finding your G-Spot: On Gratitude

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I was sitting  in a circle of spiritual strangers on a meditation pillow,  my knees resting heavily on the pillow’s surface, my sit bones heavy on my heels, and my head heavily hung— crying. The air was humid—the air was always humid  in Bali. We had just been led through a magical service conducted by the radiant and tender High Priestess of Bang Li— an experience that thawed me out, leaving me in tears. A vibrant woman approached me softly, “I feel moved to speak to you,” she said, “are you sick?” God, it hurt me so bad to know that I didn’t look well, that people could see it,  “I’m getting better but, yes, I have Lyme disease. I’m in Bali doing Ozone therapy,” I said.  She held my hands,  “I had MS, I was about to end up in a wheelchair—in fact I had ordered the wheelchair— and now my lesions are reversing because, in a weird way, I started vibrating above the illness.  You will get well, I can tell.” I cried harder…because I was sad, because I was exhausted, because I hadn’t slept in maybe 2 weeks, because I felt loved in that moment.  We talked for a good while—she was Greek,  a graduate of MIT, and on her way to study mysticism in Thailand and she found her extraordinary story hilarious. She laughed and laughed. I cried. “You just need a few things to heal,” she said,  “one, you need to laugh.” I stopped her, ” I never laugh anymore. My sense of humor is gone.” It was true. I had been suffocating in my own sadness AND lack of sleep for so long. Her lightness was contagious though, and  I softened enough to release an honest smile and chuckle. I felt free in her presence.  She continued, “you need to vibrate above the illness. Do what brings you joy. I think you belong on stage—dancing or acting.” I lit up, my energy coming more forward thinking about the things I loved.  “And, third,” she said, “you need gratitude.” I jumped in, “OH I have that!” She said, “I can tell, you’re actually full of gratitude.” I was so relieved. I was doing something right all of that time. I was/am grateful and she could see it. I wear gratitude like I wear my other glaring personality traits—loud and proud. She hugged me goodbye that night, promising I’d get well, and we never spoke again, but she gave me an incredible gift in that brief exchange. That was the night I welcomed my sense of humor back after an absurdly long intermission, I reinstated myself to the performing arts, AND that was the moment that I realized that my gratitude practice (nine years deep) was having a profound effect on my life. In more exciting words, I’ve done the work, I know where my G-Spot is and—ahem—I  can orgasm whenever I choose.

Now that I AM on the way to a full recovery, I’m here to back her up—an “attitude of gratitude” is indispensable during illness (or at any other time—let’s be real).  It can be the light IN the tunnel—not at the end of it. And if joy and happiness are scientifically proven to support our immune system then making a list of things we are grateful for (which is a verified way to increase joy and satisfaction) seems like a really obvious place to start, right? But how to gratitude!? How does this practice just become part of your life instead of that nagging thing that you HAVE TO DO every night?  And, how can you ALWAYS be grateful no matter what horrifying thing is happening in your life? Like  chronic illness, depression, loneliness, death, divorce, and so on. Gratitude got me out of bed and happy to participate in my life countless times, and how did I get there? Like so many of my stories, it all started  with my personalized cocktail of cocaine and daddy issues. 

My father was in rehab again.  He had been sent once  before under the same Wall Street conditions, “get sober and you can keep your six-figure income and your executive position. Don’t get sober and keep up this behavior— we will have no choice but to fire you.” Eight years earlier that threat worked, but this time, he was frighteningly unaffected by the potential risk. He was wildly against getting sober—putting him in rehab was like caging a lion, he was just waiting to get out and go on a killing frenzy.And I, apparently, wasn’t one to judge.  On February 14th, 2004, while my dad sat on his hands in rehab fighting his cocaine addiction, I ripped my first line off of a mirror in a bedroom on the Upper East Side of Manhattan. And I got so high—so staggeringly high. Later that night/early that morning,  back at home, I was experiencing my first miserable come-down while my brother stumbled around freshly wasted. We did what 2 high siblings affected by alcoholism do—we fought an incoherent, mindless fight. He wanted to visit our father in rehab, and I was not invited. In fact, I was forbidden, he said. I squealed in his face, pissed off,  provoking him to throw cautionary punches at me, purposefully grazing past the tip of my nose— just to let me know how mad he was and close he was to losing it. I eventually stormed off to bed. Defeated and exhausted, I fell asleep as the sun came up.

When it turned out that my dad didn’t want visitors, we were given the option to write him a letter. I wrote him a fucking letter, alright— my anger toward the old man had become unhinged. The problem with my “unhinged” letter was that it lacked ANY strategy. If my plan was to shame him into getting sober (which I believed it was), I was failing miserably.  My real motive—that of a 16-year-old girl desperate for her dad’s attention— went undisguised:

“I’m a party girl. I just ripped my first line of coke the other night. I party hard.I’m no goodie                -two- shoes. I drink and smoke and take pills—I measure up to all of the guys, but I don’t get carried away. Not like you. So this isn’t coming from some pussy place. I know what it is to love drugs, and I know     what it looks like when someone needs to stop. You need to stop. I love you.  Jackie”

Ah, the Hallmark greeting card from one dysfunctional family member to another.

He never wrote me back, but in his first few turbulent days back from rehab, he asked to speak to me alone. I was on edge and excited—I hadn’t been alone with him in so long, and I was hoping for some deep connection, a new spark, love reignited. We went into his office, I took my seat at his cherry oak desk and he strutted to the power seat— behind the desk. His office was dark, heavy, and cluttered.  We  lit our respective Marlboro lights. He took a deep drag and as the smoke filled his lungs, he got his thoughts in order. He leaned back, exhaled, smoke filling the room, and said,  “Let me just read your letter aloud…” After he read it in full, he took another drag, put his cigarette out and leaned forward— his elbows on the desk and his piercing narcissistic eyes challenging me.  Yikes. Embarrassing—I could even see that I sounded loco. But I kept my cool, “yeah, well, it’s true. I do drugs, and, as it turns out, I like cocaine.” He grilled me. We must have talked for an hour about my specific experiences with sex and drugs before he challenged me to not drink, smoke or use for two weeks. “Two weeks. that’s all,”  he said. Anxiety coursed through my body. He took note, “you look scared because you’re thinking about the two weeks, but you can do it just one day at a time,” he said.”OK. but how in the fuck will I not use ‘one day at a time’  for TWO WEEKS?” And that’s when he laid out some other tools like journaling, the serenity prayer, and gratitude lists.

When he said “every night, you write down 10 things you’re grateful for,” my immediate response was, “but what if I have nothing to be grateful for?” Sound familiar? Have you scoffed in a similar way the last time someone suggested you write a gratitude list? My dad, totally fucked up in so many ways, came through with a life-long lesson in that moment: “You have nothing to be grateful for? You have ten fingers and ten toes. There, that’s 20 things.” I giggled, a bit ashamed that I had missed something so equally simple AND significant.  He went on, “you have all of your limbs, your senses, you can walk, you have shelter, a bed, and food.” Oh shit— It was jarring that I hadn’t thought of those things myself, but I’m forever grateful for that lesson— even though I didn’t take the suggestion for another couple of years.

Neither of us made it through the two weeks without using.  Instead, we took one last family vacation to the bowels of Hell. Apparently, Satan found the taste of me  unsuitable for his palate. Too feisty or too sweet,  he couldn’t fully digest me so he spat me out. Once I was upchucked from that vile journey, I had a lot of grime to clean off. And so at 18, I started wiping away the debris with spirituality. When a wise woman on the spiritual path suggested that I start writing gratitude lists due to my blinding self-pity,  the lessons my father taught me in his office two years earlier came rushing back.  I picked up a pen and started writing: ten fingers, ten toes, my limbs, and my senses. It was an unbearably painful time— so I kept writing and my lists grew;  I’m grateful for my limbs, my senses, shelter, food, a job, clothes, and my friends. And they kept growing.

In 2009, when my twenties were as fresh as a juicy peach, my treasured friend asked me if I wanted to participate in a gratitude email chain where we would each write our daily lists and “reply all.” “Sure,” I said, not thinking much of it, unconsciously assuming it would fizzle within a few months because most things like that do. How fun it is to be proven wrong sometimes. That email chain has changed my life. There are 11 of us on the exchange, all women,  and we have been writing for —please wait as I access the left side of my brain—seven years! We started as friends in NYC and, in seven years time, we have adventured with one another through big moves, marriage, children, death, divorce, break -ups, new relationships, new jobs  and, in my case, illness—all through gratitude listsWe have had delicious “gratitude brunches,” attended each other’s weddings, been on the other side of the screen when the first  “Introducing: insert new baby picture” got sent, been cheerleaders for each other’s dreams, and every one of those girls donated to my fundraiser. I’m so grateful for them. But because of all of that practice, I never have to do much digging to find my gratitudes, and, as a result, I’m often (not always) one of those “glass half-full” people: often optimistic with moments of pure elation. Let me be super clear as you may now be rolling your eyes at my perkiness. I am madly-pro taking days off from “positive thinking.” This is no time to go beating yourself up for not being “grateful enough.” If you need to lie in bed and steep in self-pity every once in a while, I support that, and I believe it’s also crucial to healing (in small doses). I never suggest you “gratitude list” your way out of feelings, out of humanity, but that you gratitude list yourself into a more balanced view of reality. 

You’re feel -good- G can be equally as accessible (if it isn’t already). Here are some tips:

Make your own email chain! All you need is one other person and access to your own discipline and consistency. It can take as little as 30 seconds to shoot off a gratitude list and  connect with a friend. Most of you know that I’m all about FUN (and love) so give yourself a laugh and a creative outlet as you write your lists. The subject line is where all of the genius is in our group:  We have seven years worth of quirky subject lines:  “G’zzzzzz ma Ladiezzzzzz,” “Gratitat,” “Nothing left to do but gratitude,” “Forever G,” “In Flight Gratitude announcement!” “Saturday Graterday””Guys WHOA I need gratitude,” “Spring Ahead into Sunny Gratitude,” “She’s All Grat.” “Even in Frosty California, Gratitude Survives,” “We so G and so Free,” “Grateful Feet have Got A lot of Rhythm.”  Do you catch my drift? I know, we are *the coolest.*

If your stomach is turning at the idea of being on a gratitude email chain with corny subject lines then simply start writing lists. Write them on your phone as you sit in waiting rooms ( or half-naked on the exam table), pause your stinking thinking and say things out loud when you’re stuck in traffic, write things down in your journal, and on the days when things are just so bad and you’re desperate, text a friend and say, “wanna do the gratitude ABC’s?” All day long, you can go back and forth with that trusted friend stating what you’re grateful for. They say “I’m grateful for my hot Ass,” and you say, “I’m grateful for my Bone Broth.” And they say, “My Cat,” and you say, “My Dog —AND ew you have a cat?” This is so efficient as you’ll be mastering multiple “healing activities” at once: gratitude, laughter, AND companionship. But if you’re still rolling your eyes and you’re a driven person that just needs a challenge then I challenge you to find one thing a day and write it down for the next 365 days.Try and make it as specific to the day as possible.I promise you that if you practice gratitude consistently for just a little while, you, too, will find your G-Spot. You, too, will have gratitude orgasms.

Get writing!

With fun and love,

Jackie

 

 

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Lyme Disease Stripped me Down to Human.

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I felt like I was hitting my stride toward the end of 2013—25 years old, single, sexy, and with a whole world of options in front of me. It seemed like I had absolutely everything I needed to succeed in life. Most importantly, I was young, healthy and pretty. Yes, I had those bonus things like being talented, smart, and ballsy. Blah blah blah. But first and foremost, I was young, healthy and pretty. And living in Los Angeles— just to be cliché. I sat outside of a coffee shop in Franklin Village, LA, drinking coffee with my friend Nick. Franklin and Bronson is a very “Hollywood” corner,  densely populated by improv actors and screenwriters having coffee-shop-meetings about their upcoming “projects.” Nick and I sat rolling our eyes at every opportunity but also. . . entirely fitting in with the crowd.

Clad in a black dress decorated with a gold zipper  running snug down the center , accentuating  my small waist line and coming to an abrupt stop just a couple of inches below my crotch,  drawing attention to my legs which looked extra long thanks to my five- inch- high, colorful, hippie-swag platforms, I giddily listened to Nick’s compliments, “god damn you look hot. My lord. You need to walk around like that all of the time, you’ll get an agent in a second.” I smirked—knowing exactly what kind of sparkle my blue eyes made when I smirked because I had spent way too much time smirking at myself in the mirror. . .for practice, I guess.  I thought I had already swallowed my daily prescription of validation when I noticed a man at the next table looking at me intently. He was smoking, had overly manicured black hair and hopped- up energy. His energy is what exposed him as a James Dean wannabe rather than a James Dean look a like. I had no interest in him romantically, but I was curious to find out what words were sitting on the edges of his eyes, the cliffs of his tongue.  On our way out, as I sauntered past his table, he stopped me. Through a manic lisp, he spoke with a sense of urgency—anxious to get something out of life, to go somewhere he wasn’t, passionate or painfully discontent, I wasn’t sure— he asked if he could photograph me. I could barely get a word in, he lit another cigarette, complimenting me up and down on how “interesting” I was, how perfectly “symmetrical like Charlize Theron,” how “hot my body” was my “legs,” my “hair.” He was sure (something that is amateurish in this town—all the pros know that there’s no such thing as a “done deal” until you get to set or get your check) that if he photographed me *free of charge* he could hook me up with the best agent in town. After he took out his iPad and showcased his truly spectacular fashion and portrait photography, I agreed to take his card and contact him. He complimented me five more times before we finally walked away, and when we were just out of ear shot, Nick laughed, “literally all you need to do is go outside and opportunities meet you. HA! You lucky bitch.” An opportunity met me, alright. That one exchange changed my life forever. That one exchange, that one meeting  was the beginning of my strip poker game with life—the game that stripped me of pretty (and almost everything else I identified myself with) and left me profoundly HUMAN.

Nick was right, it had been a fact—my looks got me stuff. Sure, being an “attractive female” comes with its own set of dilemmas: I’ve had a serious stalker, I’ve been talked AT in demoralizing ways, middle-aged men did shady things to me when I was much too fucking young, my father carried around my headshot telling people I was his wife (YUP), and I often felt like my only  noticed asset was that I was fuckable—like that was my only earned girl-scout badge, if you will. I’m not sure if being “attractive” was the motivator of such treatment or if “female” did the trick on its own. A combination of the two plus the undeniable fact that when I entered a room,my palpable sexual energy preceded me(something we can just blame, if you don’t mind, on the fact that I was born a Scorpio) was sometimes heavily troublesome. But, I’m somewhat ashamed to say, it was never something that really bothered me. We are all so often judged on our physical appearance and if my appearance was one that sparked endless attention, free stuff, and “any guy I wanted to have,” it didn’t seem like something to complain about. For me, being a pretty girl won me my father’s affection, got me through grade school and junior high mildly tormented but NOT completely abused. Being pretty earned me a seat at the “cool kids’ table” like two or three times; “pretty” became synonymous with “enough,” and that’s when being pretty got me into real trouble. When it was the prime definitive quality about me. That “pretty” was something that I relied on— that I needed as my sort of fall-back plan on a daily basis—THAT was a problem. And, I’m blessed/cursed with self-awareness so I knew it was a problem, and I knew that, at some point, I was going to have to learn another way. I was waiting for the day that I would have to learn about self-worth based in something else—like an amazing career, child-bearing, a PhD, or volunteering for countless hours. The day would come when I’d have to earn my space on this planet for reasons other than being print-ad material. What I didn’t know was how and when I would be shown. And, apparently I was way off about what I was going to learn. I didn’t learn that self-worth and meaning was found in a three-piece suit career at an accounting firm with problem acne and a child at home. I didn’t learn that hours of volunteer work earned me a girl-scout badge that said something other than “fuckable.” My “lesson” wasn’t in the form I expected—I mean, is it ever? What I learned is that I don’t have to do or be a damn thing to earn my space here. That I don’t need any badges AT ALL. And just so the Universe could make it interesting and have a laugh, my  lesson started on a photoshoot—a photoshoot where I was trying to prove both my looks and my coolness.

I contacted the photographer from Franklin Village; I knew exactly what I wanted to add to my portfolio: “woodsy elegance.” I wanted to capture my “nature”— both glamorous and adventurous— my simultaneous love affair with the dirt of the mountains that welcomed worn-in hiking boots AND the concrete city streets that welcomed high heels and dresses made of silk and tulle. Capturing my “essence” (not my essence at all—those are just bullshit definitions I attached myself to) meant going to the woods and rolling around in piles of leaves in a short dress. See where I might be going with this?

It was November 17th 2013, four days before my 26th birthday, and a miserable day–I was betraying myself just to get some free photos, willing myself to sit through the discomfort of being objectified on this photo shoot. I don’t want to give the reader the wrong idea. The photographer had good intentions, and he did not physically harm me in any way, but I was extremely uncomfortable with our exchange that day, and I never spoke up about it. I felt dirty and just wanted to get the whole thing over with before dark. I rolled around in leaves, sat in piles of mud, climbed around on trees, and lied on all sorts of precarious terrain to get the shots I wanted all while he said things like, “lick you lips, hot hot hot.” In one milli- second of those two hours, I got bit by a tick—the mother load of ticks. The tick that , ironically,  stripped me of the attachment to my “worn in hiking boots” and the attachment to my “city strut” AND the tick that gave my voice its platform to stand on. I would never stay on a photoshoot that made me that uncomfortable today. NO WAY.  Not to mention the LOL that I paid a high fucking price for those free set of photos—literally like 40,000 dollars of medical bills, I’m not even trying to be figurative.

When those bumpy, itchy, unattractive rashes broke out on my body, leaving me uncomfortable being scantily clad for the first time in my life, I was immediately thrown for a loop—what does one do with physical insecurities? And that was just week two of an *almost* three year long journey. I panicked at the sight of those rashes, frightened that I had psoriasis—god forbid. I was so vain and so scared of losing my “looks” that when the doctor told me I had Lyme disease, I was like, “oh cool, well, at least that won’t SHOW. Sure, it *could potentially* affect my heart and brain and nerves, but, like, you won’t see it. It’s not psoriasis.” Then the antibiotics gave me a really bad yeast infection—next-level yeast, people. So, I didn’t feel my sexiest, and I had a new scar where they biopsied one of my rashes, but whatever. I still recognized myself—or the self I had come to identify with that wasn’t really myself at all—the self that lived riding the coat tails of my looks.

About nine months and 1,000 pills later, something confusing was happening. My energy, vibrance and vitality were shutting down, like one room going dark at a time until the whole house was pitch black and haunting.  I didn’t know how to move through such unknown territory. I didn’t know how to find the door out, and I had lost my most dependable resource: my beauty.

My back slowly grew more and more hunched until I was horizontal, laid out by life. My hair started thinning and stopped growing, my eyes got dark, I dropped to below 100 pounds, my cheeks lost their pink youthful essence and, at one point, went yellow And then, one day, I needed a wheelchair (or piggy back rides) if I was going to be walking for any extended time. The mirror, something that had been almost like a friend to me all of my life (maybe even my best friend), became my enemy. What I saw looking back at me disturbed me. My reflection, once upon a time, offered me an endorsement, and it was suddenly the catalyst for deep self-loathing and fear. I could not stomach taking a selfie— I feared the camera. For the first time in my life, I didn’t want my picture taken, I feared being tagged in photos on Facebook, and I feared walking into rooms of people without my sexual, flirty, fun, and hot armor. I felt like a lightless, somber ghost of myself. I could no longer confidently strut around. I sheepishly hung my head, feeling invisible or worse—like an unwanted burden. Men stopped noticing me, girls stopped looking up to me, and I stopped noticing myself. My flirty, fun, pretty self was like a costume I zippered up tightly every day—it literally held me together, and without it, I was truly naked, vulnerable, and terrified. GUTS were spilling out. And so I did all there was to do if I was going to get well (and I would do anything to get well): I learned to love myself naked, vulnerable and terrified—I learned to love my guts. I learned that I am worthy just because I am. I didn’t have to do or be anything other than human to take up space and receive love.

One day, after two years of self-love affirmations and deep inner-healing, I was walking past my bathroom mirror and I saw something—something I had never seen before. What was meant to be a quick glance at myself  before I turned the light off instead gave me great pause. I stopped abruptly, turning to face the mirror to investigate what I was seeing. It was so new. So different. I didn’t see my face, my eyes, my hair, my weight, my skin, or anything external. I saw something so beyond the shell that I am, I saw into the vastness, the boundless spirit that is my true self, and she was so mother fucking beautiful that I had to just stand there crying and appreciating her for a few more moments. Without thinking,  I put my hand on my heart—my fierce human heart— and said out loud,”I appreciate you.” And I meant it. I felt like I was taking my first fresh breath of air in my whole life—like I had legitimately never taken an unpolluted breath or seen myself so pure. Not to be dramatic or anything, but I was basically reborn. And then that moment passed. . .probably as soon as I went on Facebook and compared myself to someone else.

It ebbs and flows, there still are days when I can’t believe how weathered I look. But, far more often, I feel like a warrior princess queen. The letting go and the surrender to being human—uncool and unpretty—sucked,  but do you know what happens after you shed the old skin? You grow brand new skin! AND you have a say in what it looks like this time around. You get to choose what baggage to keep and what to let go of, you get to choose precisely who you want to be. My skin is radiant. People are commenting on how vibrant I look, how pink my cheeks are, how clear my eyes are, and how it’s nice that I have a little more weight on me. But that’s not the payoff. Well yes it is, it’s certainly part of the payoff that I’m looking good and feeling mostly good again —I wouldn’t do all of this hard work if getting well and FEELING vibrant wasn’t part of the deal. The *other* miracle, for me, is that I don’t need your validation. The payoff is that I see way beyond the boundaries of my shell and into the vastness, the MAGIC that I truly am. I have yet to find any wardrobe or girl-scout badge more sparkly or more interesting than human. 

With fun, and love,

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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The Phlebotomist and My Body: Who’s in Charge Here?

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I was anxiously waiting for my name to be called in yet another poorly-lit waiting room. Doctor’s offices were once just an occasional means to an end: I went feeling shitty and I’d leave with a script from the omniscient doc to feel better. Now, they’re as common as my trips to the grocery store, and they no longer inspire hope but instead hopelessness. Lyme disease has both blessed and cursed me with a deep connection to my body so I KNOW immediately when something feels bad, and these rooms— they feel fucking bad. I waited, growing more anxious, feeling like I was stuck in a cage, wanting to see the sunlight, jealous of all of my friends enjoying the beautiful day. Call my name, call my name. I got up three times to check the sign-in sheet. Twitch, Check my phone, shift positions, take a sip of water, look at the clock, check my phone, try to focus on something else, and repeat. And one hour later, one second before I developed Trichotillomania, my name was called. However, this is always a false sense of relief since all that happens in this time is that I get to stretch my legs while I’m ushered into the next room where I’m asked to wait just a liiitttttlllee while longer. This particular experience was at Quest Diagnostics, a lab for drawing blood, so I felt extra annoyed that what could take five minutes —IF PEOPLE WERE FUCKING INTELLIGENT— was becoming a full-blown interruption to my evening. The woman who was about to draw my blood directed her stink of apathy at the computer screen, never even looking at me. I hated her for it— she wouldn’t even acknowledge me if we were riding an elevator together yet she was about to wrap a giant rubber band around my bicep so that my veins screamed and then jab a sharp object into the one of her choosing. I sat staring at her. FUCK YOU: ACKNOWLEDGE ME. Acknowledge the person whose information you’re staring at: You know my full name, birthday, weight, height, marital status, physical ailments, and my fucking financial bracket based on insurance so LOOK UP AND SAY HI. I was super moody. When she finally turned around, it was to grab my arm, get a vein, and stick me (I get stuck with needles at least three times a month so it’s not like I’m a stranger to the sensation or super uneasy about it anymore). This one hurt, and the fact that I had been holding my breath in anger for almost 2 hours wasn’t helping. It hurt so much more than I had expected, and it didn’t stop hurting. It throbbed. I squealed which provoked her to unsuccessfully attempt pulling the rubber band off which only made the needle shift in my vein so it was jabbing me harder. “Stop pulling the rubber band,” I pleaded. “Oh my, I’ve never had this happen before, I’m sorry,” she kept saying. I didn’t believe her. She pulled the needle out and the crease in my elbow pulsed with no relief until I passed out.

When I finally came back to full(ish) strength, shivering because I had sweat so much, I started to cry. I felt so violated…again. I was flooded with memories of doctors, hands, and needles meddling with my body. I thought of all of the healthcare providers who treated me like a mere inconvenience. I was overwhelmed. After another few minutes of getting back into the present where there is infinite safety I realized, for the umpteenth time, that my body is so smart, and it was teaching me yet another lesson. I hadn’t been on point with my self-care the previous couple of days, and it was like my body needed a reset. I needed a reminder that self-care comes first — I had been pushing myself both physically and emotionally: I didn’t eat enough that day, I had rushed to the doctor’s office, I had packed my schedule too tightly resulting in anxiety, and I wasn’t giving myself space to process Ian being gone, my Mother being here, and IVIG dose number four starting the very next day. I was being hard on myself about finances and beating myself up for all sorts of things. I had gotten out of my habit of ninja-level self-care, unfairly leaving the weight of my needs on my phlebotomist which resulted in a loss of consciousness. Interesting.

It was a much easier time when I trusted “the doctor.” I was taught to always trust medical professionals. “The doctor” always knew better: “what did the doctor say? did you go to the doctor? The doctor said you need to take this. The doctor said you were fine. The doctor said it’s just anxiety. The blood work came back fine so let it go..” I LOVED the virginal world of trusting people with any sort of medical degree. In 2013, I walked in to see my first lyme literate ND who happens to also be famous for her experience and research in the world of Lyme. I immediately undressed so she could see all of my rashes and, after 30 minutes of face-and ass-time, I left with prescriptions for three different antibiotics. She didn’t order any blood tests or get much of a history on me — she was busy and it was fine. I’m impatient anyway; I’ve always been on board for a quick-fix. Hence, I’ve always loved antibiotics. When the first round didn’t work, I gave over my credit card number freely for 15 minute conversations with this ND, and I took her advice for 10 solid months. I took something like 450 oral antibiotics over that time, prescribed by her. In all fairness, she continued to ask me if my body could handle them and I continued to say, “yes, if YOU think it will get me well then I can handle it.” I took crazy expensive herbs prescribed by her and my acupuncturist, never really researching anything. I didn’t want the responsibility of caring for myself, truth be told. Who does? I need so much —can’t “you” just do it? I was like, “charge my credit card, charge it however much you need, as long as you say what I’m buying will work.”  Then, one day, my body fought back and started screaming at me. I had not had that experience yet — the experience of being in -tune with my SELF. Up until then, ten months into illness, I simply dosed myself as much as possible, blindly letting my doctor do what was actually my job: decide what was right for my body. So when I started experiencing a profound weakness every time I went to grab a bottle of antibiotics, I was confused. I would gag at the thought of swallowing another pill, I could actually feel my muscles weaken when I went to open a bottle. I couldn’t deny that my body was telling me something. It was shouting at me to STOP.

In retrospect, that’s when my recovery truly began: November of 2014. I needed a new treatment plan. It was between getting a PICC line and going the all- natural route(something I had NEVER in my life wanted to touch. I was madly pro quick-fix, and nothing about chewing on celery seemed quick to me). I had two friends in my life, both of whom had recovered from Lyme, one with a PICC line and the other all-naturally. But they gave me the same advice, “listen to your body, only you know what is best for your body. No one can tell you what to do, everyone is different.” This is true especially with elusive illnesses like Lyme disease where there truly is NO ONE WAY to getting better. Each body is different, and listening to my own intuition was the best advice I could have received .It was so clear. I knew, for some reason, that the only hope for my recovery was a natural route— healing from the inside-out. I began seeing certain medical professionals that treated me with kindness and care, and I started treating myself,  researching and listening first and foremost to my body through all different kinds of herbs and treatments. I was improving, but I wasn’t getting nearly as well as I wanted to be. Again, I listened to my body and to what was being shown to me by “the Universe,” if you will, and all signs pointed to Ozone therapy with a Doctor, who treated many Lyme patients  with success (now including me!), in Bali, Indonesia. It was in Bali that I first noticed just how much my relationship to my body had changed.

Lying on a long, flat medical table in a dark room finished with medical equipment that reminded me of a mad-scientists basement, I was waiting anxiously to get stuck with my next needle for round two of Ozone. The previous needle had brought me close to fainting, but after my best friend spooned sweet tea into my mouth, I recovered just fine. My doctor, a warm, light-hearted Balinese man in flip-flops, was leaning over me, his shirt falling on my face, gripping my forearm in search of a juicy vein. Squeeze- nothing there. Squeeze harder ..HARDER… a little something but not enough. Then he shifted to my left arm while his nursing assistant kept hold of my right.Get off of me, get off of me. Tears formed, I grew hot, and my body was shaking. I wanted to be treated with delicacy. That was the first time I realized I was traumatized from all of the doctors who grabbed me, touched me, poked me, dismissed me, misdiagnosed me, and mistreated me. My body, the same body I had abandoned and dismissed, the same body I had betrayed (especially when I went to visit the doctor) the 27 years prior, was now like my own child: I had lost my naivety, and I knew that if I didn’t protect my body then NO ONE would. Treating myself with such delicacy and love has been a major factor in recovery. Ever since I started being my own greatest ally, it’s been an uphill journey—albeit slow as fuck because apparently I needed a lesson in patience, but uphill nonetheless.

My doctor in Bali wasn’t doing anything wrong (he needs to find a vein) and my ND, though over-saturated with patients and a bit careless, was doing what I asked of her: more antibiotics! My phlebotomist, that bitch from last week, wasn’t NECESSARILY doing anything wrong either. My doctors aren’t supposed to act like the parents I never had (which I seem to just expect from EVERYONE). In this confusing world of illness, where I am so powerless over so much, including certain provider’s bedside manners, AND competency, I can focus on the one thing i do have power over: self-care. Am I showing myself the kindness and love that I wish the medical world would show me? Am I eating enough, drinking enough, and resting enough? Am I welcoming joy and wellness into my life? Am I keeping my schedule manageable? Am I turning to my friends for help with doctors appointments and blood-draws and IVIG treatments? If I think I’m not getting the right treatment, it is my job to first listen to what my body needs, second to do the research and see how I can get my needs met, then walk into a doctor’s office and advocate hard for myself. A doctor, like everyone else, is ICING ON THE CAKE. First, I need to bake the cake. I AM IN CHARGE HERE.

With Fun, love, and power,

Jackie

PS: for support on your journey with illness, we are here

 

 

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East Coasting: A Photo Essay

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Following up with last week’s post, this is an update of how it’s been going on the East Coast. In summary: better than expected! I’ve been almost myself. It’s been exciting to watch myself do a lot of the things that I couldn’t do even six months ago.

Getting off of the plane last week, I walked right past the wheelchairs and smiled. I didn’t just not NEED a wheelchair;  I HAD ENERGY- like plenty of it. Ian and I went to sleep at my Grandmother’s that night. Oma came out to greet us on the special corner where her home sits in the urban sticks. The corner I played on, ate Mr. Softee on, talked to all of the neighbors on, hung out with Alley (our childhood dog) on, and eventually departed on. It’s the corner I did all of my leaving from. Every time I got on a plane, it was from there, a diagonal shot from the front door to the cab, I said goodbye. When I moved to Hawaii, when I’d go home to Hawaii and eventually LA- that’s where I said goodbye. I’ve said countless hellos and goodbyes on that corner. It’s the corner that holds all of my “I love you’s.” I’ve said those words so many times right there, I bet the concrete holds some of my heart.

Ian and I got out of our cab and I said it again, “Oma! You’re so little. I love you. I’ve missed you.” Of course, even at midnight, Oma had food for us. It’s VERY hard for her to understand the extreme diet I have. I mean she’s 85 AND German so to her being gluten free, sugar free, and dairy free means I eat whole wheat tortillas, honey nut cheerios, and “those hairy fruits I bought for you- what are they called- kivis?” My heart really swelled for the effort.

I asked her to take a picture with Ian and she yelled at me. Then later, apologized profusely because she didn’t realize I wanted a picture of her AND Ian, “Oh boy, I hope I didn’t offend him,” she said. I got one anyway.

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We went to Lyme, Connecticut the next morning. That’s right, Ian’s family is from LYME, and, yes, that IS where Lyme Disease gets its name from.

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I imagine that photo above is what it would look like if we traveled together. I took this photo so the paper is merely a prop, BUT I was totally reading it at some point.

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At the Lyme Beach Club, Ian taught me how to catch crabs. I squealed like a scared little shit, but I got a great photo.

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We ate THE BEST Lobster rolls at this joint, and RANDOMLY this little New England beach town joint had GLUTEN FREE rolls. Very exciting.

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We took Amtrak back to Manhattan in the rain.

In the heat of deep Brooklyn, we took a walk and stopped to cool off like a couple of NYC kids. Ian found White Castle super entertaining. We consumed none of their food FYI. Ian left for Germany a few hours later, and we said our goodbyes and “I love yous”  on that precious corner before he got in a cab.

That evening, Juliette and I reunited and did what we like to do: we ate some real fucking food. Well, we ate real food that Juliette crafted masterfully for us in a Brooklyn apartment with the perfect view of NYC.

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Michael, who just so happens to live in Oma’s neighborhood came to hang the next day. Michael and I worked together on a feature film 10 years ago. Reminiscing about our time together and making new memories, we laughed and laughed AND did a photoshoot.

I got to spend time with my Aunt and Uncle. I haven’t seen them in over two years, and FINALLY, for the first time ever, I saw my Uncle’s band, The Smoking Gun, play in the Hampton Bays at this small-town, water front bar and grill. My Mother came out, and we DANCED. You guys- look at me –  Killin’ it with the healthy. My Uncle’s band was so good. To be honest, knowing how talented he is and what kind of music he likes, I thought I was going to get stuck listening to some eccentric jazz music which I WAS NOT excited about, but I was totally freaking wrong. If I had known how much fun it was to see them, I would have gone about 10 years ago. My Aunt showered me with gifts and my Uncle showed me 600 photos from their recent trip to Peru and Ecuador. At photo 200, I was sorry I asked to see any 🙂

Back in Brooklyn, Jessica came to visit me. My oldest friend, and my chosen sister, she loved on me for 2 days. I forced her to do my hair for a few hours and cuddle me which she HATES. Jessica also hates sleeping with me because I like closeness and I’m a mover and a shaker. Also, I talk in my sleep and stuff, but she slept with me anyway – with a giant pillow between us so she had her own space.

In an attempt to throw some shit away at my Grandmother’s, I started taking a trip down memory lane. AKA: MY HORRIFYING PAST.

First of all, that photo of me in the red sunglasses was NOT TAKEN ON HALLOWEEN, nor was it a “joke photo.” That’s just how I dressed. Also, it is a representation of how hard it was to take drunk selfies before the iPhone. That upper photo pretty much represents me as a teenager- drunk and peeing and pouring shampoo on my dear friend who was stuck in the bathtub? And lastly, I graduated from High School which is almost shocking considering that looking at my report cards, I pretty much did poorly ALWAYS in EVERYTHING except drama. But I celebrated graduating with my tongue out – of course.

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Pretty normal. Check out those tights. They’re for 80 year olds- just looks like I have a bunch of sagging skin or something. Jessica calls this my young “stripper pose.”

And also just the proof that my Brother has disliked me for a very long time.  “The Easter Bunny That Ate my Sister” is a 10 page intricate story WITH vivid illustrations. “I wondered why the Bunny ate my sister and not my pet snakes or something,” he writes. Gee, I don’t know, it’s YOUR STORY, and it could have gone down however you wanted.

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I found this book in the very same box that held my parent’s wedding album.  So that was funny.

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And this is what I’ve mostly been doing the whole time – hanging with my childhood “best friend”/ “daughter”/ “baby”/ “Victoria”/ DOLL. Nothing weird here, guys. Her eyes just look weird because I gave her “pink eye” like 20 years ago and then didn’t actually know how to fix it, but she’s doing great otherwise. SUPER NORMAL.

Check me out, living life and stuff.  Just a few more days of New York loving then another “I love you, Oma” on my home base corner and off to Los Angeles for IVIG treatment number 4!

Fun and Love,

Jackie

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Just Keep Swimming

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I said, “I am down, lonely and afraid.” To better help you understand how I’ve felt over the last couple years, I used the analogy of a person laid out on the concrete, getting their face bashed in. I asked all of you to meet me down there, hold me, ask me where it hurts, and what you can do to help. Many of you did just that, and it gave me that little bit of strength I needed to get up. I am standing. I may be a little weathered, but I am upright and ready to walk on. Actually, that’s metaphorical because I’m actually horizontal on the couch with two IV’s in my arms, but I’ve eaten today, I’ve rested, I’ve given love and received love, I put some laundry away, and I’m writing this. If you are struggling, if you are obsessing over what the fuck, why the fuck, and how the fuck, the one  piece of tangible advice that never fails me was said by Dory from Finding Nemo: “Just keep swimming.” It was also said by like a bazillion other people in a variation of other words, BUT Dory said it best if you ask me, and I’d like to honor the release of “Finding Dory.” I’ve been practicing this for years though the situation I’m currently in has been the greatest challenge. There have been countless times I’ve wanted to just stop and sink, but I’ve experienced the benefits of  keeping on too many times in my life to give up now.

I was heart-broken (again) a few years ago. I was stuck in bed, restricted by panic. It had been light out recently enough that I still hadn’t turned any lamps on. As it grew darker outside, it grew darker inside, which reflected MY insides. I’m so sensitive during that hour-long adjustment when the light turns to dark. I can do the light and I can do the dark, but the in-between, the purgatory, the new, the gray- THAT I do not like. I laid flat crying, fuck it’s already night-time, he still hasn’t responded to my texts, I can’t get out of bed. I called a woman who was 20 years my senior and sobbed to her, “I can’t get out of bed! He hasn’t responded,” snot filled my shirt, I choked on some phlegm, and I made a whole case supporting my sadness and paralysis. She was so compassionate- this beautiful  woman with 3 children, and a host of her own more threatening struggles, took the time to talk me through the pain of “he hasn’t responded to my texts.” She said, “It’s OK sweetie, listen, I want you to get up and make the bed. That’s all you have to do. Get up and make the bed. Do the dishes, take a shower, come over for dinner. That’s ALL you have to do. Get up and make the bed.” I swung my legs around, I got to a standing position, I turned a lamp on, and I made the bed. It’s easier to keep moving when already in motion – that’s like simple science, I think. I did the dishes, and I took a shower and I went to dinner. I didn’t feel good, but I certainly didn’t feel any worse than when I was laying in bed. That wasn’t my first lesson in “just keep swimming,” but it simplified something I had been hearing/practicing for years.

Both of my parents taught me this lesson- through their words and actions: they made life so fucking hard that I had no choice but to learn to tread water or drown. When I was 12 and made the beautifully stupid decision to be an actress when I grew up, my Father challenged me to study the craft, and I did. I studied it as much as I possibly could for a girl that age. When I got nervous that I wouldn’t succeed, he said, “Doesn’t matter, you never fail if you don’t quit.” I wonder sometimes what would have happened if I didn’t hear that so clearly: Would I have quit after so much rejection? Maybe. Years later, during my first year of college, I called him in an attempt to connect. He had already slipped out of my hands into the world of insane drug use, but this was in my denial phase. I called him very upset- why he was my first phone call is a lesson in psychology 101, but regardless, it worked out because he said something I’ve never forgotten: “There’s only one thing you need to know all through life. ONLY ONE NECESSARY PIECE OF ADVICE. The only rule you ever need to follow is ‘just do the next right thing’.” Just do the next right thing. I’ve found that to be true- it’s all I ever need to do.

My Mother told me a story once that really stuck with me, too. When she was dealing with the true horrors of being married to a violent alcoholic and trying to raise two children, she had many mornings where just  seeing the daylight pained her. She told me that during those times, she started taking out one book at a time from our encyclopedia collection (oh my- I’m showing my age. I grew up with encyclopedias!). She went from A-Z and studied. She learned something new everyday which led to some college courses, which led to meeting a professor that changed her life, which led to TWO Master degrees. Just keep swimming you get places.

I feel lucky to have  the ability to persevere, to persist, to try again, to get up, stand up and TAKE ONE STEP. I comfort myself often by visualizing the path I’m on, and I think “well if I just keep walking forward, I WILL get healthier, I WILL get a job, I WILL grow as a partner and a friend and a human.” It doesn’t  all happen at once. It’s in the small little steps, one foot in front of the other, that we make progress. I know that last week’s post was a hard one to swallow for some people, and I know that it was a binge on comfort food for others. I’ve had a lot of pain in my life; I’ve had plenty of obstacles to surmount- some self-inflicted and others where my part was victim, straight-up. It brings me so much comfort time and time again that, in this world where I’m powerless over so much, the power to keep walking is mine. I always have a choice about whether or not I want to get out of bed, make the bed, do the dishes, feed myself, write, apply for jobs, apply for government assistance, make that next phone call, find that new doctor, go to the next audition. The most freeing part: I don’t have to FEEL LIKE doing any of it, I just have to do it and shit gets done. I keep moving forward, growing, walking the path, and, MY GOD, at some point, you acquire all the tools you need to surpass the weeds, your legs are so strong you can climb any hill, your knees are so strong you can go through any valley and when an earthquake hits, somehow, you’ve developed enough balance to stay standing.

PS: First stop after Iv treatment: FINDING DORY.

WITH FUN AND LOVE,

JACKIE

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The Story I Never Tell: There’s No Silver Lining

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My body was breaking out in mysterious rashes.
I’d discreetly lift a pant leg to reveal the repellant red rash and ask people what they thought.
They’d say, “ Huh, that’s weird, but I promise you it’s no big deal.”
Or, “Don’t worry so much.”
Or, “Be positive. Have positive thoughts.”
I was positive when they first broke that they were no big deal, and I was positive as time went on that they would heal.
Weeks passed. I was panicking.
The rashes got worse.

I saw an herbalist.
He examined me and gave me some herbs saying, “don’t worry. It will clear up in a couple of days. These always work.”
I left his office positive that I was holding the solution in my hands.
I was relieved.
I took the pills. I took his advice, putting tea tree oil on the irritated areas.
The rashes continued to infiltrate my body without my consent.
I was concerned. People said, “I’m sure you’re fine. Stay Calm.”

I saw a doctor at Urgent Care and he suggested it was Lyme disease.
PHEW. I felt naively positive about the diagnosis.
At least it’s not bed bugs or psoriasis, I thought.
Because NOTHING is worse than bed bugs, right?
Wrong.

I was told to find a lyme literate doctor in the LA area.
Easy, not a problem, right?
Wrong.
I was turned down by four or five different offices.
“We aren’t accepting new patients.”
“We have an opening two months from now.”
“We are 1,000 dollars for your first visit.”
I cried.
Why was finding a doctor such an obstacle?
Why didn’t anyone want to help me?

I found a reasonably priced doctor in San Diego that was willing to fit me in.
PHEW, I was positive THAT was the beginning of the end.

I drove to San Diego, and the doctor prescribed three different antibiotics for a duration of two months.
I left her office absolutely certain that an attack plan like that was more than enough.
It was good I caught it so early, she said.
It was good I was being pro active about my health, I thought.
I would be one of the lucky ones– I’d escape the terror presented with Lyme, I told you.
I put about $2,000.00 on a Credit Card that day for the doctor’s visit, the medicine, and herb tinctures to support my body. I thought I’d pay it off quickly.
I took 456 oral antibiotics in two months.
I was tired.
I reminded myself that it was temporary; that I would get well soon.

Two months passed.
I took my last pill and posted on social media, celebrating, “the end! Back to the mountains”
I went on a hike.

Two days later, I got sick with merciless flu-like symptoms.
I was scared; I could tell something was wrong.
I convinced myself that my body was adjusting to being antibiotic free.
Two weeks went by and the flu-like symptoms lulled into my new normal.
I stayed positive, and I stayed busy waiting to hear the results of my blood tests.
I was positive they would be negative. They HAD to be negative.
I told you they would be negative.

The results came back positive for active Lyme infection.
I fell onto a bench in Union Square, NYC.
I sobbed.
It made no sense.
I felt so alone.

My doctor said I needed to do another few months of antibiotics including an intramuscular injection called Bicilin.
“Do you think you can you stomach more antibiotics?” she  asked
“I can stomach anything that will get me well. Promise me it will get me well.”
“This is the best course of action, especially with the Bicilin,” she said.
At least I had an action plan. OK so another few months.
I COULD and WOULD handle it.

Insurance refused to cover the Bicilin.
I started fighting with insurance.
Day after day I listened to hold music,I got transferred to person after person who could not/ would not help me.
I was being denied such a basic right.
If the doctor says it will help cure me of this hell, why would insurance deny paying for it?
Months went by, fights ensued, and we finally gave in to paying out-of-pocket.
My mother generously paid 1,000 dollars to get me a month of shots at $100 a shot.
People said, “You have this shot now. Be positive. It WILL do the trick.”
I was certain that the shot would cure me; the doctor told me it would.
I was grateful that my mother could pay for it.
I stayed grateful.
I got so much sicker.

I tried to apply for disability.
I got turned down.
I kept working instead.

Four months of antibiotics went by. I can’t count the number of pills I swallowed.
A daily dose of red pills, blue pills, white pills, pink pills, and one
long, painful shot in the ass that left me limping for a day or two.
I slowly suffered.
I consumed countless disgusting herbal tinctures and hundreds of supplements that I didn’t know existed – just to combat the fucking armed rainbow terrorizing my gut.
I was counter- attacking Lyme from all angles.

I started writing a script.
I kept working.
I stayed positive.

I swallowed my last Clarithomycin feeling very sure that it was over.
I posted a photo of myself laying in the sun, “antibiotic free!”
I kept wanting YOU to think that I was “getting better.”
Because I kept needing to think I was getting better.
A week went by, I was doing well!

Suddenly: Crippling pain.
Suddenly: Insomnia.
Suddenly:Muscle spasms, sore soles, ear pain, confusion, and heart palpitations.
Suddenly: darkness.

I went away from social media. I had nothing positive to say.

I dropped out of acting class; I couldn’t do it
I dropped my short film; I couldn’t do it.
I stopped eating, and I stayed in bed.

I called the doctor AGAIN.
She put me on a new regiment of antibiotics — a set of colors I had yet to experience.
I took them for a month along with my newly prescribed sleeping pills that didn’t work.
My body was giving out.
Lack of sleep, all of those pills, and Lyme Disease were officially kicking my ass.

I couldn’t sit up.
Laying down hurt.
Social events were the loneliest events.
Showing up at work was the greatest acting challenge I had ever been presented with.

I called my Uncle from my serving job one morning.
It was 6 am LA time, and I was cleaning up a cafe preparing to serve people on no sleep and belly full of pills.
I wanted something… some sort of comfort that my father couldn’t offer me.
He said, “Oh honey, I’m sorry, but be positive, don’t forget to be positive.”

Be positive? It’s like watching someone laid out on the concrete getting their face bashed in and standing across the street from them, watching, and shouting, “Don’t worry, man, THINK positively. The pain will pass. Hey- at least it’s temporary.”
Instead of crossing the street, getting down to their level, holding them, and saying, “I’m here. Where does it hurt? How can I help?”

My mind, body and spirit pain were expanding, wrapping me into a straight jacket.

I was a prisoner.

I couldn’t fight and my perp was a tough mother fucker.

I took myself to the Hollywood Mental Health clinic at 8 am one Monday morning.
I stood in line with homeless people who blew their noses too loudly and stood too close to me.
I just needed to survive.
I wouldn’t tell anyone.
Not until I felt better. Not until I could stop crying.

I couldn’t do antibiotics anymore.
I decided that I would beat this naturally; antibiotics weren’t working.
I was 100% sure that was the right choice.

I had no money which presented a great obstacle if I wanted to heal naturally.
My credit cards were maxed out already from this medical hell.
I kept working: serving, acting, babysitting, and a few other random jobs I used to pay my rent, feed myself, and go to acupuncture.
At least I had a job, at least I could pay my rent. The money would come, I told myself.

I did a fundraiser, and you guys supported me BIG TIME.
The fundraiser allowed me to quit my waitressing job.
You sent me to Florida to get peptide shots.
I was SO excited/ hopeful about those peptides.
I posted about all of my gratitude and progress.

Weeks passed. Peptides helped but it was apparent they were not the solution.
I never said that out loud.
I couldn’t.
It was too painful.

Onward. I found a new, highly recommended Lyme doctor in Los Angeles. I felt so good about her.
She could over see all of my care here.
She cost $600.00 out of pocket for the first visit.
After much deliberation, I used some fundraiser money for it.
She WAS going to get me well.
I told you that she was.
I was being just as strong for you as I was for me.
So that you wouldn’t get scared and run away.

She ran a host of new blood tests.

I didn’t post when the blood tests came back with numbers that terrified me.
I couldn’t understand exactly what they meant.
She wouldn’t review them with me unless I paid 300.00 for the follow-up visit.
I emailed:
ME: “I can’t pay you but will you tell me what these immunoglobulin numbers mean?”
DR. : “Chronic disease.”
ME: “Lyme disease or something else.”
DR. :“Lyme, something else, or both.”

I felt let down by her.
I felt let down by my San Diego doctor who kept filling me with antibiotics.
I felt let down by my family.
I felt let down by my General Doctor again and again and again.
I felt let down by peptides.
Let down by the Cowden Protocol.
Let down by some friends.

Let down by my body and myself.
This was too dark; I got back into action.
What CAN I control? Where can I find positivity?

I went to Bali for two months of ozone therapy.
My best friend took the journey with me and paid my way where the fundraiser fell short.
My mom helped a lot, too.
I was so grateful.
stay grateful stay grateful stay grateful.
I put those blood test numbers out of my head.

I got stuck with 40 needles in two months.
I cried a lot. I was in horrible pain.
I didn’t sleep.
I showed up anyway. I went to yoga anyway. I meditated anyway. I wrote anyway.
I loved anyway.

I was very sick the day we left Indonesia.
So sick that we had to fight to get on the plane.
“She looks too sick,” Cathay Pacific employees said as they ran around trying to determine whether or not they wanted to let such a sickly human on the plane.
What the FUCK do I look like?” I wondered.
It had been a year and a half, but I still didn’t even really believe that I was sick.
I still don’t, sometimes.
Denial helps.

I got back to LA.
I attacked life immediately because I HAD TO BE better.
I promised you I would get better in Bali.
Within 24 hours, I was at an audition that nearly killed me.
Ozone therapy helped more than anything else had, but I pushed it.
I couldn’t do it; I was back in fetal position.

I got an easy front desk job at a yoga studio.
Then they let all the front desk people go.

I got food stamps.
I got unemployment.
They took away my food stamps.

Through a series of events, I found out I needed the IVIG treatment.
It seemed/seems this would be my last step.
If I needed IVIG, I would GET IVIG.
I immediately made phone calls.
I asked my General practitioner.
He said Yes.
I was ecstatic.
Then he left the room for 15 minutes, came back, and said, “On second thought: No.”
He said, “Well, you’ve made it this far so you can make it a few more weeks without treatment.”
Did he just say, you haven’t croaked yet so like let’s roll the dice- your chances are good, I thought, did he just fucking say that.

He sent me to specialists instead.
I was hopeful the Infectious Disease doctor would help.
She immediately turned me away, “your case is too complicated for me.”
I’M QUOTING: NOT PARAPHRASING.

I went to a Rheumatologist.
He said it would take him many months of hearing my history before he would even examine me.
He argued with me about the existence of Lyme Disease.
I didn’t want to fight anymore so I cried.
He diagnosed me three months later with Chronic Fatigue Syndrome or Fibromyalgia.
He said, ‘I’ve never seen someone so young, so sick. I’m sorry.”
That didn’t make me feel better.

I saw an Immunologist.
I felt hopeful.
He said I had asthma, am severely allergic to dust and mold, and have a fucked immune system.
Then he went on a mysterious leave of absence.

I casually told my Neurologist that I needed the IVIG thinking he couldn’t give it to me.
He said, “Oh you want IVIG, I’ll give you IVIG.”
What a fucking miracle.
I was so excited.

I was excited until the pending authorization was the catalyst for months of fighting and phone calls.
It got denied because Lyme disease was listed as my condition.
It took months to sort out and appeal.
It finally got approved. I was thrilled.
I called the infusion center to make an appointment all sweaty with giddiness
There was a problem. An insurance problem.
It wasn’t going to work.
I cried.
A week went by. I got sent to a new infusion center.
I called them. There was a new and more complicated problem this time.
But at least I got the approval, people said.
Stay grateful stay grateful. Eat well. Do what’s in your control. 

Weeks, maybe one month, later, after countless phone calls, I had a date to start infusion.
I was nervous it would fall through, but chose to be positive.
I was beyond excited.
I posted on social media what a triumph it was.
I started telling people! I was preparing for my life-changer.
It was Friday, and I was due to start on Monday.
Friday at 4 pm, I got a phone call.
It fell through again.
There was a new problem with the home nurses. I needed to find a different doctor for my first infusion; it was too high risk to start at home.
My body was overwhelmed, swinging on the pendulum between fierce excitement and fierce disappointment.
I wanted to give up so many times.

I did, thank the freaking heavens and angels, finally start my treatment one Wednesday afternoon.
How triumphant.
I received the drip everyday for 5 days.

There were side effects. I got a superficial blood clot.
I was up all night dry heaving with migraines. I had intense pain all through my body. I was spoon fed and carried to bed when I couldn’t lift my hand or stand up.
THAT was my triumph? My big celebration? I would prefer celebrating over a big job, an engagement, a new home, a pregnancy, a diploma, or anything else that wouldn’t result in dry heaving with migraines.

Onward.
Last month, in May, I received my second infusion.
It was easier. Much easier.
And I feel positive effects. I, again, feel hopeful.
But the authorization has run out, and the infusion center has to resubmit it to my insurance. I was scared for weeks.

I just found out that it has been approved. Exhale
But then, I have no idea where the next check is coming from because unemployment ended. I worry about my next meal. I worry about the side effects of treatment. I worry that I won’t get well. I’m sad, so sad, that this is how I’m spending my 28th year.

I talk to government-run agencies everyday just trying to get my needs met.I feel invisible.
They say, “Hopefully we will get this sorted in 3-6 months.”
3-6 months? Because I need to eat TODAY.

I’m running really low on ink in my silver-colored pen.
My positivity gasket is running on empty.
Gratitude is slipping through my hands; I’m too tired to hold it.
My heart is heavy, and my body wants to sleep.

YES, there’s been massive progress:  I can sit up, walk, climb stairs, smile, laugh,  I’ve put on weight, and I have color in my face. YES, I’m grateful for so many things. YES,
it will pass, like everything else does. And, YES, I still have remnants of belief in myself and my strength. I still have a thread of hope that I will heal completely.  But I am fucking tired.
The uncertainty is weighing on me. I don’t want to fight for my life anymore. I beg of you: hold me, ask me where it hurts, and how you can help because I am down, lonely and afraid.

Love,

Jackie

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Read This

L1130949Since the beginning of time, unclothed people of all races and all places were preaching what the Beatles put into pop music centuries later: “All you need is love, love, love is all you need.” Today the message is everywhere. It’s in the cliché, framed decors from Target, hanging in the hallway of many suburban homes, reading something like, “Love is patient, love is kind, love never hurts..” It’s spray painted it on buildings or tattooed  on flesh. We hear Ru Paul every week on Ru Paul’s Drag Race say, “If you can’t love yourself, how IN THE HELL you ever gonna love somebody else? NOW, she knows something about love (if you’re not watching Ru Paul’s Drag Race, get on it people, it’s the ONLY reality show offering a colorful spiritual experience). There are countless books on the subject of love, yoga teachers are preaching it (probably in Sanskrit so you don’t understand, but you’re all “Namaste” anyway), the person guiding your meditation is like, “send love out reverberating through the room, the city, the world” And you’re probably like, “MMMMM love… I’m starving, my legs are numb, I need to do the dishes, I want a manicure, oh I should check my bank balance. Bring it back. mmmmm love…I have to pee” I have a friend who completely beat Lyme Disease say, “people always ask me what got me well, and, the truth is, I think love got me well. Love heals.” Love heals.  Good news: I, too, am a lover of love. I, too, believe that love heals. In fact, I KNOW it does, and it’s not all that complicated.

It was just a month ago. I went north to Ojai, CA, for the day to meet my boyfriend, Ian, on one of his cycling routes. Ojai is a picturesque, lazy little town. It’s encased by beautiful mountains and populated by the down-to-earth wealthy – each shop on the main strip closes by 5 pm which is when all of the locals eat their home cooked vegan meals, read, and go to sleep. The non locals are there to camp, to visit the hot springs, to hike, to “adventure.” I have a really hard time in “adventuring climates” these days. I was a pro, low maintenance adventurer – all I needed was my hiking boots and I’d figure the rest out as I went. One time, I  hiked in a pair of children sized CK boxer briefs because that was all that I could find on a whim, but I had my trusty hiking boots. They were my companions, my symbol of freedom –  freedom to go and be wherever, whenever. It looks DIFFERENT now. Those boots are gone and my new ones are 6 months old and still look new. The mountains mock me, I swear. They tease me like childhood playmates, “Hahahah ,You’re not well enough to enjoy this giant playground. You just stay in your TIME-OUT and watch all of the others have all the fun.” I mourn the girl I once was.

I know enough now to know that ANY “getaway” has the potential to cause this deep sadness which, in effect, causes more symptoms. I feel my cells get tired from the depression and I watch my body, piece by piece, fall into the darkness of the STORY, “I’m never going to get better. I’m never going to be spunky and fun and ABLE again. I want to climb those mountains and I can’t. This is some sort of cruel joke. I want to be free. Please let me be free.” And, every time I create this particular story, that’s when I start to cry. Gets me every time. I mean, who wouldn’t sob with a story like that rolling around in their brain? My mission, on this trip to Ojai, was to avoid the story and just enjoy the sunshine.

It was a FAIL. I met up with Ian already fatigued. I felt ugly and isolated from all of the smiling tourists. I felt isolated from the sunshine. Ian is annoyingly unswayed by my little tantrums and suggested we get food. With my head down I was like, “whatever. sure. I mean, fine. I guess I should eat. I hate everyone.” That’s what came out of my mouth, and in my head, I was like, “Please stop this train. You don’t need to go into this feeling,” and I’m praying and I’m talking to my inner child (YUP- IT WORKS) , and I was considering just leaving because maybe I just couldn’t handle it today. Nothing was working- I went down the rabbit hole quickly and ungracefully. By the time we sat down to eat, I had reached that tear- jerker part of the story that I mentioned earlier, and I was crying. Mostly anxiously sniffling and feeling the sweat on my palms build up while I stared out of the cafe window, watching the world I didn’t feel apart of. Ian got quiet which made me MUCH MORE ANXIOUS because now I’m like, “great AND he’s going to break up with me because I can’t pull myself together and I’m no fun to be with and I can’t climb the mountains with him and I’m the worst.” And, THAT , is precisely when I start weeping. That is ALWAYS the final sentence in my tragic story. There’s no further to fall. Now, as far as my head tells me, I’m going to be sick forever AND alone.

I had maybe managed to chew and swallow three fork loads of a NOT gourmet salad in-between tears. I kept my head down, shamefully, and asked for a to-go box the next time the waitress came over. My head was wild with thoughts, “do I go home? do I fight through? HOW AM I EVER GOING TO BEAT THIS ONE? I’M IN TOO DEEP.”

The to go box was gently placed in front of me by a smiling waitress, “here you go!” I opened it to find a folded, uncolored coloring page- the kind that the diner offers to children with the hope of keeping them occupied. Written in big letters with crayon, it said, ‘READ THIS.” I really love surprises, so I unfolded it intently, and it read, “DON’T CRY. YOU ARE LOVED.” I immediately broke into hunched over, uncontrollable sobs. The world had reached out, put its arms around me, and gave me a great, big, warm bear hug. I felt safe enough to cry in its shoulder. The sunshine I had felt isolated from radiated around me. I smiled, first while crying, and then calmly. I glanced towards the waitress with my hand on my heart, “thank you,” I mouthed.Image-1-2

The mountains looked beautiful. I took photos, including that self-portrait of me up there, with my wings, in the woods. I interacted with Ian gracefully and lovingly – we even found time and energy to play hot lava. Near the end of the day, I said, “that note saved the day. Have you noticed how much lighter I’ve been since I got that note? That it was ALL i needed?” It WAS magic. He said, “Yeah, I should have thought of doing that myself.” Yeah, no kidding, Ian, get it together. Just kidding- that dude is a rock star of the love.

I make it a practice to never under-estimate the seemingly tiny things we do that can have an impact like that. That one little note made me smile, which made Ian smile and will likely make YOU smile. Maybe your heart will feel lighter now, too. Maybe you will have a better day. That waitress, I don’t even know her name, is still saving the day with her love. It works, and sometimes it’s that simple, “All you need is love, love, love is all you need.”

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