It’s My F#$%^ Party Now, and I’ll Cry if I Want To.

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I walked into a healing space this past Sunday morning, a space where people go to feel their feelings, get quiet, and be all lovey-dovey. I took a seat— I totally do the lovey-dovey shit. Immediately bored/ over caffeinated, I started surveying my surroundings. To my right, there was a big childlike sign, a huge white scroll taking up the better part of the wall. Even though the all-caps font was uninteresting, the hot pink lettering was a zing, calling my attention to the words, “DON’T WORRY.” I smirked, yeah, worry is a useless emotion. I swiveled to my left and got instinctively and irrationally angry when I saw a nearly identical scroll taking up the back wall that said (in the same boring all-caps font), “BE HAPPY.” AH, of course, that saying, “don’t worry. be happy.” I don’t like that saying. I’m not a monster—I like the song because c’mon the dude makes magical music with his mouth, but I have a problem when the lyric stands on its own as a pressuring and trivial blanket statement. There is no light without the dark. Sometimes, it IS sad, and sometimes we cry. The broad statement, “be happy” makes me want to throw a protest. I get all defensive and “activisty:” WHY? Why is it shameful to be unhappy sometimes? Isn’t sadness a part of life, and something we have to move through? Isn’t unhappiness often revealing something to us—that it’s time for a change, maybe. Why is it shameful to cry? Why is it especially embarrassing to cry in public? Should tears be stored and saved for only special occasions? What’s the special occasion? The psych ward? Rehab? Jail? A funeral? Because from what I’ve witnessed in my short life, those are the places you go when you just keep stuffing your cells with garbage. How many times have you been told, “don’t cry?” How many times have you watched another panic at the sight of your tears and say something like, “no more crying now, only smiles.”  Or, if you had a childhood like mine, then you know what it is to get in trouble every time you cried–to have to hide your tears— your unhappiness, your honest concerns for what’s happening—and build up an armor of “numb” to protect yourself from a heated attack.

OK, fine, so maybe my reaction to phrases like, “don’t worry, be happy,” have SOMETHING to do with my past. . .but hear me out.

My home was a battleground, and my bedroom was my trench. There were land mines, step on one and experience an explosion. No matter how much memorizing I did, no matter how limber, acute, and dexterous I learned to be, there was always a new land mine. I never quite had the system figured out, and I TRIED—in an act of fierce self-preservation, I tried. Smart-enough, pretty-enough, quiet-enough, kind-enough, polite-enough, good-enough are assets that will always lay just outside an irrational alcoholic’s peripheral vision—they do not see “enough.” And, as a child, I didn’t know that it  wasn’t personal, and there was nothing I could have done/been to make it better. There is NO hidden map to avoid the land mines in an alcoholic home—you will continue to step on ones, they will shock you, it will hurt, and then, if you’re like me, you will go to your trench and cry. Because crying wasn’t allowed anywhere else.

My father came home out-of-the-blue one day in 1995. My dad wasn’t expected at home much, and he certainly was never expected before dark. . .on a weekday. His absence was delightful. I was six or seven, and my brother was/is/has always been 16 months older than me. We sat on our dirty, old, orange carpet in the living room, playing, while my grandfather watched over us admiringly. My grandfather, a man who might resemble the minds-eye of a jolly candy shop owner—his toothless smile lit up a room and the warmth that came from his slightly overweight body was as comforting as the duvet cover when you’re exhausted. In his endlessly loving eyes, we were perfect without having to do a damn thing to prove it, our existence was enough for him. He was on after school child-duty while my mother worked as a receptionist in a doctor’s office, a job she needed to take because my father’s Wall Street checks didn’t quite make it home. I remember hearing my dad’s car that day. My heart skipped a beat, his stomping darkness preceded his entrance. I had learned in my seven years of existence how to take the temperature of a room and be hyper/painfully aware of my surroundings. I mean, land mines will do that to you. I could tell without him entering what kind of mood he was in. Energy shifted, I held my breath, and he finally stormed in— his dark hair disheveled, like black paint splattered on his head as his long- legged strut whooshed by us accompanied by a volatile smirk and “hello.” “Hello,” I said, thinking, “speak loud enough so he can hear you but not too loud.” My smile was gone. I kept my voice down, holding my breath, and I waited like a soldier at war, standing-by to see what the enemy might do first; hoping that he would eat something and leave again or eat something and go to bed, or eat something and die— anything but stick around. Instead he shouted for us, and like his little soldiers, we went running, “coming, dad.”

There were some crumbs on the kitchen floor. Come to think of it, they were quite possibly left by my grandfather. He did ALWAYS have a habit of leaving a mote of crumbs around his chair—he was a pastry-lover and eventual diabetic. Regardless of whose fault it was, there were just a few crumbs— something that’s fairly normal in a house with two working parents, two young children, and, that day, a 75-year-old pastry-eating man who couldn’t bend down. My dad’s reaction, I know now, had nothing to do with the crumbs. He probably needed a good cry, he probably needed a hug. My brother and I stood, shoulder to shoulder, as he shouted at us, harassing us and name-calling, “you’re a couple of pigs,” “you’re fucking disgusting, now get down on your knees and pick up every last crumb.” When we got to our knees, on opposite sides of my dad’s legs under the kitchen table, he grabbed us by the backs of our necks, as you would grab a dog, and shoved us into the ground again and again, as you would do to a to a dog who peed in the house, “there are no fucking crumbs allowed in this house.” (That house was super unpleasant and needed a remodel in like 1950. . .crumbs were not the issue). My face was burning and I had that knot in my throat, the thing that happens right before you burst into tears. That knot was my warning signal…HOLD IT IN, SWALLOW, I was shouting in my head, DO NOT CRY, Do not let him see you cry. If he saw me cry, it would be like setting off another land mine. He HATED when I cried and, quite frankly, saw no justified reason for me to EVER shed a tear or be angry or overwhelmingly happy or have really any feelings, for that matter.

We were sent to our bedrooms for the remainder of the night. I wanted to spend more time with my grandfather, but we were told not to say goodbye to him, not to speak, just to go to our rooms. So as we marched sheepishly away, I covertly glanced at my grandfather on my way up the stairs, my eyes begging him to come save me. He looked devastated and helpless. I got to my room, shut the door, sat on my bed and quietly wailed, holding myself while I shivered. I’d always get so sweaty in the midst of attack, and by the time I had my freedom to release, I’d be drenched and cold. I loved my bedroom. I felt safe crying in my 30 square foot dust-box as long as my dad stayed downstairs. That is the most common example I have of my process. I hurt all of the time, and I held my breath until I found solace in my room. My room was a haven— a place to live in fantasy, to cry, and, later, in a natural progression under the circumstances, to do drugs.

My family fell apart and dispersed. I sobered up and became really passionate about my emotional freedom and my growth as an individual. I didn’t want to save my sorrow for my bedroom or even for my house. I didn’t want to “behave,” or “be quiet,” or be the kind of person who said, “stop being over dramatic—pull yourself up by your boot straps.” I wanted to HEAL. I’m all in for this journey—mine and yours—the anger, the grief, the joy, the laughter, the sadness, the mother fucking TEARS. I watch people behave like assholes all day, every day— I live in LA. Customers snap at their baristas or make some sideways comment about the long line they’re standing on or shut doors in your face, or shout unrepeatable things at other cars on the road, but CRYING in public is a fucking taboo. Give me a break. Crying is a necessary part of healing and growing. It doesn’t need to be saved for your shrink’s office. If you need to cry now, cry now. If you’re sad and need a hug, say so. It’s better than going home and taking it out on your family in some ass backwards way. Trust me.

Healing is not easy or fun, but I have solid role-models to show me what ignoring trauma looks like and that looks a lot less fun.My brother is, unfortunately, a prime example. He’s not so into feeling shit. I swallowed years of nasty, condescending language from him. When we were sent upstairs as kids, I would try to team-up with him, feel it with him, and he would shoo me away with a pained and angry stare, “go away.” He never did any crying with me, he never even told me how it made him feel. He called me a “drama queen,” “annoying,” “a pain in the ass,” “a liar.” He stuffed it all, had sudden outbursts of rage, and found a way to numb further. . .on repeat. If you take a look at both of our lives today, I may be the one with Lyme disease, but I am the more healed. No bacteria in my body could ever be a match for the poison that has built up in him over the last 30 years. I am, somehow, with all of the medical shit I have going on, the healthier one. . .sadly, without getting into the dark details, it’s not even a close call.

Twenty  years of poison- build- up ahead of my brother is my old man’s example.  Not knowing how to handle his own childhood trauma, his own emotions, initially made him a highly unpleasant human, but as time went by, he became a dangerous human. So, when he mounted our suburban front stoop at noon in 2005—a stoop that was supposed to be my entrance to home but instead was my landing pad for a war zone—in a pair of gray boxers, 20 pounds too skinny, and began chasing me and my bloody mother around and cursing at us while all of the neighbors watched, I had to wonder, “what the fuck was SO UNACCEPTABLE about the tears I cried in public? Or about those crumbs under the table?”

Feel your feelings, save the world.

With fun, love, and tasty, salty tears,

J. Shea.

Pulling for Latoya

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This was my infusion week. My drip line was removed yesterday, and I am restlessly recovering now. During infusion weeks, I have a hard time deciding what to write/when to write/how to write. It seems like all of my energy— creative and otherwise— is sucked from me and stuffed in a bag for safe-keeping until I’m ready to play again. How do I rally? Day one of my infusion, I watched that Tony Robbin’s documentary everyone is raving about, “I Am Not Your Guru.” It’s a good watch — “I mean nothing mind-blowing, nothing I don’t already know,” says my self-righteous ego.HAHAHA. Except that I did learn something new and my mind was blown over this one thing: Push motivation vs, Pull motivation. Push motivation is exhausting, he says, you’re pushing yourself, using willpower and discipline to accomplish your goals. The push will never last long-term because you get burnt-out. PULL motivation, on the other hand, requires no “rallying,” no forced effort; you are being pulled—you want to do it, you don’t have to do it. This is crucial advice for those of us who are sick—so sick that there’s no room for push. So sick that push can actually delay healing and drain our adrenal glands. PULL, however, feels fulfilling, joyful and bring us toward healing. So, I thought, what am I pulled to write about this week while my IVIG infusion drips? There’s something I haven’t been able to stop thinking about for a couple of months now—something I feel utterly PULLED towards, therefore, something easier to write about with an IV in my arm, aching pain circulating through each cell of my body, and a deep exhaustion that makes me wonder if I’ll ever stand up again. I am pulled to an upright position. I am pulled to an upright position for Latoya and all of those just like her.

In early June, I sat in static LA traffic, the sun blasting through my windows— attempting to blind me or burn me, adding pressure to an already tense situation. I sat, nail- biting,  1.5 miles from my home (a ride that should take 3 minutes), watching the red light change to green, to yellow, to red again. . .on repeat. I switched on KPCC, our local NPR, and happened to catch A Martinez interviewing John Hwang, creator of “Skidrow Stories,” an online photography series documenting the lives of the homeless that live on skid row in Downtown LA. My mind was ripped from self-obsession, traffic obsession, obsession around my illness, and directed toward the immense calamity happening just 7 miles SouthEast of where I luxuriously sat. I was PULLED, pulled to know more, pulled to help, pulled especially in the direction of one woman he met on skid row. I wrote to John after I heard the interview asking if I could write about him, his mission, and his friend, Latoya—he graciously agreed and thanked me for my interest. I also asked if I could accompany him one time which he kindly agreed to as well. I love the work John Hwang does—the work he was pulled to do.

Standing on a bridge in downtown LA, killing time in order to wait-out the traffic (yes,traffic, the way I was introduced to him. . .maybe there are benefits to traffic), John randomly chatted with another pedestrian on the bridge—nothing out of the ordinary, just some face-to-face human connection—something that, I suppose, IS becoming extraordinary. John remembers, “So we’re just having this conversation and then he tells me he was on the bridge because right before he saw me he was going to jump off and kill himself…He said that somehow our conversation made him feel better and gave him hope in life…” That moment inspired John to spend time on Skid Row—just…talking to people. In an effort to share these stories—of tragedy AND triumph— with his friends, he pulled out his camera and asked if he could take  someone’s picture. Hwang has no interest in exploitation, he has never had a gallery or exhibit—he even turned down CNN’s interest in making a documentary series. But the pictures are what put John Hwang, “Skid Row stories,” and it’s inhabitants in the spotlight. It’s what helped us to see the people, and hear their voices…#LIVESMATTER. Skidrow Stories is a way to support and encourage the thousands who live forgotten and ignored. John Hwang is actively changing the lives of people on Skid Row by listening to them. By listening to people like Latoya…

Latoya is a woman who would likely intimidate me on the streets: angry and quietly volatile— that’s how I imagine her. Like most people who present themselves with anger, drug addiction or mental illness, there is a story, a background. A story that needs to be heard and loved, not overlooked. Latoya has been hardened from unfathomable trauma, a life so unfair it seems like fiction. John noticed that every time a dog would pass her by, she’d soften, and her tender heart— her innocence—would break through like a bit of light at the end of a long storm. Hwang questioned her one day on why she had such a different reaction to dogs. She said, “dogs would never hurt you like people do…”

Latoya was repeatedly raped by her stepfather until she was 11 years old when she decided to run away. Her family chose not to look for her so they could continue collecting welfare checks on her behalf. She met a pimp on the streets as a pre-adolescent.  When Latoya was 11, she was in the throes of human-trafficking and working as a child prostitute. When she contracted HIV in her late teens, she was left— dropped and abandoned…again. That is when she started using hard drugs on the streets. Latoya prefers to stay on drugs in an effort to numb her sense of worthlessness and loneliness. How many people only see “homeless drug-addict,” when they look at her? I wonder. Her story is, unfortunately, not even close to “unheard of.” Her story is one of tens of thousands.

When I was young and naive enough to think that the world could operate in “fair terms,” I thought a lot about the homeless community. I remember driving by a vacant, off-white house, the paint was peeling, the windows were boarded up, and the front door seemed to be made of steel. It was a big-enough house—big enough to make me wonder why it was taking up all of that hardened space, dead energy, offering nothing back to the world. People were living on the streets, and so I wondered like I thought anyone would, “why don’t we fix that house up for the homeless.” I would see this could-be-shelter from the back seat of our suburban SUV and have grand fantasies of cleaning up the place, and painting it some bright color, inviting all of the homeless people nearby to live inside. I imagined myself cooking for them (I owned one of those cookbooks for kids so I could get by). I imagined smiling and laughter: a community of strangers feeling loved, seen, and heard. I felt pulled to make that happen and didn’t know where to begin (because I was like eight). As time passed and my innocence passed with it—I came to realize the vastness of the homeless community, the intricacies of our government, and then I was really stumped. I turned a blind eye.

I live in Los Angeles, a city where homelessness is multiplying daily right alongside the billionaires. I drive past people all day, every day. Women and men walk the double yellow line with signs like, “please have compassion. anything would help.” They stare at me, and I usually have nothing to give—sometimes a Lara bar or two, but more often than not, I just look away. In fact, I usually lock my door because I’ve been taught (through experience) that as a small woman, I am unsafe. But this epidemic cannot be denied. All people deserve to be seen and heard. I feel pulled to do something. I want to know Latoya. I want to know all of the pre-adolescent girls, gearing up to run away from home because they are being raped by their guardian, and I want to take them to my magical bright  house where we smile and make food all day. I felt inspired to get immediately over to Skid Row and talk to people, too. Maybe even find her, hug her, love her. And I feel completely unsafe doing that on my own, but I can’t ignore the PULL I feel, the aliveness that pull generates.

Yesterday, I got shit news. I received scary blood test results that sent my central nervous system into an anxiety-ridden shock and eventual collapse. Just as I was pulling myself together from that news, I got the news that I was denied federal disability because my condition isn’t “severe enough,” and I can “adjust to different work even though I am  hindered.” And then I cried. I cried because I feel abandoned by the system, by my doctors, by the minimal friends and family who haven’t shown up, and by my body. When I think about my childhood, I don’t just have abandonment issues because of my parents. I think about all of the onlookers—the neighbors who didn’t call the cops, the family members that didn’t rescue me, the teachers that never checked in when I was clearly losing my shit, the cops that didn’t show up, and the justice system for letting down my mother and therefore me. It’s those people that I WISH would have said something. . . at least acknowledged what was happening and asked if they could help. I felt all of that sadness again yesterday, the heartbreak. And with my own devastation, I felt an even stronger pull to tell Latoya’s story—because none of us should be denied our truth.

With love,

Jackie

PS: find skid row stories on Facebook

Treasure-Hunting? You Have the Map

314. %22Safe Route%22

If you’re here looking for a quick-fix solution to Lyme disease, I will disappoint you. If you’re here because you’re googling in a desperate search for the way to “get better asap,” I will—sadly—disappoint you. I am a person that has a great deal of recovery from this disease and more to come, but the most important thing I have learned over my two- and- a half-year long struggle with Chronic Lyme disease is that there is no one solution, no one way, no magic trick. What works for my body, likely won’t work for your body and what works for your body would probably need to be modified for mine. Antibiotics do not work for everyone. Nor does The Cowden Protocol, the Buhner protocol, Ozone therapy, infrared saunas, eating raw, high doses of vitamin C, coffee enemas, IVIG, stem cells, reiki, and the list goes on. For most people(including myself), it’s a combination of many things, leaving an uncertainty around what ACTUALLY “did the trick.” But look at that list: yes, it’s scary and confusing that there’s no one remedy, no steadfast solution, but it is also a list that presents bountiful opportunities to heal; there are no real barricades, there’s always a new road to explore. Healing flaunts an abundant landscape. On this site, I can only write about my experience, the paths I went down, which paths led to an opening and a rainbow and which ones led to a moldy cave summoning death. I can only hope that one of the paths I suggest happens to help you. It was frightening when antibiotics — the most commonly known treatment for Lyme — didn’t work for me. It was frightening to look at all of the forks in the road and know that nobody, not a single person, had the exact directions that would lead me out of the woods. That my guidance needed to come completely from within was startling…lonely, but every time I relied on someone else’s map, it didn’t take me where I hoped it would go. It felt so hauntingly desolate to be that much of an individual— I felt I had already done enough work in this area, and I really wasn’t up for the task of a deeper relationship with my internal guidance system (fuck that), but it seemed like I didn’t have a choice. If I wanted to heal I was going to need to become my own greatest ally, advocate, and traveling companion. And I wanted/want to heal.

As a result of how I was raised, I didn’t trust myself for most of my life. My personal instinct and self-trust— something that we are all born with— were stolen from me and replaced with extreme self-doubt. My notably powerful inner-voice was quieted by my father’s outer-voice, force-feeding me the idea that I was wrong… always.  That foundation left me endlessly seeking counsel on what I “should” do, the opinions around me seemed to hold more weight than my own. And then in my early twenties, I was faced with a big decision that no one could make for me, and I was forced to begin the scary descent into self.

I moved to Hawaii from NYC when I was 23, both for a boyfriend that made me feel safe, and because I didn’t want to do the NYC grind anymore. Deciding that I wouldn’t let an acting career control my happiness (I didn’t want to live in NY or LA or London), I moved, thinking, “if I love to act that much then I can act from anywhere.” And I did just that. I landed on Maui and within a couple of months was on stage and signing with an agent on O’ahu. There was one tiny little problem—I HATED it. I was a big fish on dry land. I loved the work I was doing, and I loved a lot of the people (some very talented) I was working with, but, in the end, there was a total disconnect: I did not belong. I didn’t want to talk about the surf, I wanted to talk about George Bernard Shaw, and I didn’t want to look at one more fucking painting of coral, I wanted the MOMA. And I didn’t want to be the best, I wanted to be INSPIRED and challenged by the best. But leaving Hawaii meant leaving my long-term relationship with my sweet boyfriend, it meant leaving a picturesque mountain home essentially on a goat farm. It meant leaving my very  comfortable life that COULD likely satisfy me on some level for a good time to come. I wanted to leave, but what if leaving all of that was a terrible decision? I struggled for over a year. YES, OVER A YEAR. Should I stay or should I go?  Or maybe I should move to O’ahu ? ON REPEAT, for a year, to anyone who would listen. I wished more than anything that someone could just tell me what to do, what the right thing was, or give me the instruction manual on how to live a fulfilling life. I attended Unity Church one Sunday, a non denominational experience of— I don’t know— spirituality, in a desperate attempt at peace. After the service, an announcement was made that there were prayer chaplains, people who pray with you, and I jumped up to be first in line— I was THAT desperate. I was seated opposite a mild-tempered man dressed in pale linens—his demeanor matched the luxurious breeze and lush scenery on the outdoor balcony. I was the thing that didn’t belong, dressed in black, a tea kettle about to scream. He looked at me and said, “what do you need today?” The blue sky and the green grass darkened, the breeze went stale as I shifted out of the present and into the fear of the future, and I burst into tears, “I don’t know…GUIDANCE. I need guidance, desperately.” I closed my eyes to deepen my breath, he gently and lovingly— like he was an old friend— took my hands and… said a bunch of spiritual stuff that I don’t remember. I opened my eyes, now bored and still without an answer, and that’s when he said one last thing, “may you always know that the guidance is inside of you and nowhere else.” DING DING DING. I did know. That deep-knowing that I had been trying to repress for so long came storming through the surface, like a breeching humpback whale, and bellowed, “please leave. You need to go, you need to leave your guy, and you need to go to LA.” Motherfucker. My heart wants the most complicated shit. Plenty of people would have wanted to stay, plenty of people would be happy and thrive doing exactly what I was doing, but I am not plenty of people, and I cannot steal your desires. I cannot rob you of your internal guidance system because I can’t locate my own.

I went— I went terrified, in tears, and with almost no money, but I went, and I claimed for months that it was the hardest decision I had ever made. I don’t know why—I had already chosen to quit drinking, quit doing drugs, move multiple times, cut off my father, welcome him back in, leave multiple relationships, quit college, continue my education as an actor, quit jobs, take jobs, turn down jobs, etc—but something about leaving that relationship and that goat farm on Maui for LA life truly felt like the hardest decision. I turned 25 in Los Angeles a few months later, and I was high on my new life. I had made the right choice, I was thriving.  And then, suddenly, my worst nightmares started to manifest. I went overboard, and the only thing that threw me a life-raft when I was a hot- second away from drowning was my internal voice.

I was profoundly tested in the waves of a destructive romance and a new decision needed to be made that would deeply affect the rest of my life—would I deny myself and submit to his storm in an act of feebleness or trust that the life-raft would lead me safely to shore?  My inner voice was wild and loud. I knew from the moment I met him that he and I would clash so profoundly it could be deadly, and I repressed myself again, manipulating my truth to get what I intellectually wanted—self-betrayal is almost a betrayal of the Universe and, in my experience, it has always led me to the depths of despair. Again, what was my near-death experience is probably someone else’s fantasy life. Someone else could have happily been in that situation, but I wasn’t—I wasn’t just unhappy, I was suicidal.  When the act of not listening to my gut was actually going to kill me, I gave in—I left him, I flew to NYC to recover from what was a traumatic experience, and I vowed to trust myself, to listen to my inner voice from there on out. It knew better than my brain did. I would stop denying myself, betraying myself, abandoning myself, and I would pay attention to what my body wanted instead of shutting it up with some damaged part of my brain.

Again, I thought I had learned enough at that point: there would at least be a couple of years  of smooth sailing. NOPE— I got sick just a couple months later. While all of that previous experience gave me a foundation to grow from, trusting my guidance system when it came to how to treat and heal from an illness—when literally EVERYTHING (my life) was at stake and literally NO ONE had the one answer— that is next-level shit. I actually had no idea just HOW MUCH information my body held. Our bodies are very smart.

When the common treatment of long-term antibiotics didn’t work for me, I was faced with the horrifying task of trial and error. I learned/ am learning to submerge myself in patience and self-care. Slowly, the practice of staying in touch with my body, consistently doing what felt “right” to me, going where the love was, and being my own greatest ally has dropped me here—in a much healthier place. We are each dealing with distinctive chemical structures/illnesses/traumas/brains and therefore, we all heal differently. I found out that the guidance system I hold within my little self is a perfectly detailed map to the treasure, inviting me to use it freely whenever I want. I still turn down the offer sometimes because I’d really rather not walk through the Lion’s den that is sometimes life, but it’s there, and it’s the best tool for healing Lyme disease I’ve got. I am sorry if this disappoints you, but that is what I have to share today: find your own way, trust your body, and learn to love the shit out of yourself. Find a few (or a hundred) loving hands to hold on the journey but you lead the way—the benefits are miraculous and empowering.

With fun, love, and an abundance of healing,

Jackie

Can I Come Into the Out Now?

into the out

DreamWorks brought us Home, an animated film about an alien race called The Boov and their attempt to take over the planet. One unique Boov, named “Oh,” has no intention of cooperating with his species—he’s lovable, friendly, and kind: nothing can rob Oh of his innocence. I sat on my plane to Bali last year captivated by Oh’s adventure, smiling at his energetic sweetness and his silly speech patterns, glad that cartoons could still put a smile on my face when all else was failing (apparently, cartoons also now give me access to spiritual experiences, deep insights, and entire blog posts). Tip, a young girl taught to be cautious of the Boov, gets frightened by Oh when she runs into him in an imitation 7/11 and, with the swift application of a broom stick, locks him in a foggy fridge full of milk and sodas. My lovable purple friend smears the fog so he can see, tries to convince her of his kindness, stares at her naively and says, “can I come into the out now?” Tip responds, “NO. You CANNOT come into the out now.” Tip was essentially testing Oh— once he proved himself to be an ally, he was allowed into the out. And, immediately, because I have an uncanny ability to relate everything back to myself, I thought: I am Oh, and Tip is Lyme disease. And on my trip to Bali, 32,000 feet above ground, not traveling for adventure or fun but to have all of my blood cleaned with high hopes of returning healthier I thought, yeah i’ve been banging on that cold glass for a long time. Have I learned my lesson? Proved myself? Can I come into the out now?

Like most people, I had lived most of my life taking simple human-being-on- planet-Earth pleasures for granted—like going outside. Running myself around on almost-empty was my permanent state : my fuel light blinking, functioning on the remnants of caffeine and youth. My time was strategically overflowing with things I didn’t care THAT MUCH about, leaving me consistently unfulfilled. I couldn’t sit still and focus— I couldn’t be inside “home.” Home was where the bills were, home was where the trauma happened, home was where my email was and my to-do list was and sitting with myself was, and the mess, the laundry, the audition to prepare, the writing I wanted to attempt—every corner holding space for quiet “me time” and meaningful activity that made me itch like I was having an allergic flare. NO THANK YOU. I’d rather be in flight where I felt free…from self. Home was simply a place for sleep, a shower, and MAYBE a morning cup of coffee.

Living in NYC, I worked three different jobs while also attending school and/or acting class. Leaving my apartment in the morning, multiple bags— the pounds added up equaled my body weight —would hang from my shoulders: my purse, my acting bag, a catering tux, a school bag, a couple of books (one was never enough), my iPod, my journal, my moleskin planner, and a camera. I spent all day, everyday, either in conversation or blasting music through headphones to overpower the thoughts in my head until I turned 20 and abruptly decided that I should PROBABLY be the next Dalai Lama. I know, shocking turn of events. It’s no surprise, that when I decided to go away on a TEN day silent meditation retreat to begin my training to be the next leading authority figure on spirituality and silence, I left eight days early in full-blown-panic deciding that stillness just wasn’t for me. I vowed to get back on track with my lifelong aspirations. And I did… until I got distracted by a man and decided I should probably move to Hawaii.

Hawaii gave me a whole new challenge— how does one make the most serene place in the States excitable and frenzied? I maneuvered, quickly learning that Hawaii was more about staying busy in nature, not so much with jobs and concerts. Hawaii is where I learned to hike, to hike barefoot, and to be the asshole person who scoffed at anyone who wanted to pause and take in the views . Hawaii is where I trained myself to get up 2.5 miles of steep switchbacks barefoot and run back down in less than an hour. Needless to say, I had minimal hiking companions.I found companions elsewhere: I was in a book club, writing class, an artist’s way group, volunteering at the humane society, working a couple of jobs, acting, auditioning, volunteering wherever I could within the theaters, nurturing friendships, half showing up for my relationship, beaching, camping, learning all sorts of new ocean activities that intimidated the fuck out of me, hosting guests as often as possible, developing myself spiritually, and STILL there was time to spare. Too much time. I had to leave.

When i got to Los Angeles, well, fuck man, that was just a nasty combination of NYC and Hawaii: I had never kept SO BUSY in my life. In Los Angeles, I had all of the outside to explore AND all of the city to experience. There were new people to meet by the thousands, so many attractive men that I didn’t want to blink, countless hikes to explore, an acting career to develop, and I had bills to pay in the meantime. The apartment that acted as my home for a year, got no love. Maybe a frame or two hung from the otherwise empty walls, a futon acted as a bed in the living room so my roommate/best friend, Jessica, and I could stop sharing a bed. An unmade bed sat in the bedroom next to the dull Ikea dresser that I hastily put together one night (so hastily that the top was on backwards and I was “too busy” to ever fix it), an out-of-place bookcase (also put together incorrectly) sat in the middle of the living room, the bathroom was filthy, and I think there remained a couple of unpacked boxes in a closet. My turquoise blue work desk that I purchased in an attempt to actually stay home and do work, sat in a dark corner collecting dust, and a bulletin board hung above it. A bulletin board with all of my untouched ambitions attached to it. I didn’t care what my house looked like or felt like because I was never there—it was just a pit stop: pee, shower, shave, change, and bye. Bye Jessica, bye inside, bye ambitions on the bulletin board that I’d rather not face.

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How’s this for symbolic? It wasn’t taken as a joke.

The behaviors I’ve listed are entirely unhealthy, but they are also a testament to how much I love being alive—feeling the sunshine, climbing things, seeing friends, meeting new people, playing games, and even working! I was lucky enough, up to that point, to take it all for granted. It was terrifying for me to get so sick that my well-honed ability to distract and disassociate came to a screeching halt. It was jarring as fuck, I hated the inside so much. The inside of the house and the inside of me.

I spent a year and a half feeling like I was trapped inside of one of those russian stackable dolls, inside of LA, my street, my apartment, my bedroom, my bed, and finally my body. I spent that time staring out of my window memorizing colors and sounds— observing how blue the sky was that day, how green the trees were, how the green would change from forest- green to lime-green as the sun made it’s way through the sky. I listened to the obnoxious blender indicating my neighbors’ breakfast time, the birds indicating the late morning, the people’s doors opening and closing indicating their busy lives, and then I’d hear the musicians across the street indicating their evening band rehearsal. That was the sound I hated the most. They’re a great band —it made me miss feeling alive like nothing else did.

And then there were those days where I got to go outside and take a short walk or something. Those days when people around me would say things like, “doesn’t it feel good to be outside?” Let me tell you what I felt like on those days. I felt like everyone who was breezing passed me on their shirtless afternoon run, showing off their tanned and toned bodies, were MOCKING ME, unfairly and falsely deciding that those people had no ailments of their own. Well-steeped in my own self-pity and fucked up perception, it felt like I alone was living in a post-apocalyptic world only allowed to watch people enjoying the sweetness of planet Earth, but I couldn’t partake in any of the fun. And that thought process often hurt more than staying inside. When I did go to a party at night, I just felt jealous. Jealous and tired and like it wasn’t worth all of the effort just to “get out.” I watched most of my friends continue on, flawlessly complaining about the normal 20-something pain: broken hearts, confused hearts, financial problems, working too much, PMS, career goals or lack thereof, or the flu, and all I could think was “I’d give anything to work too much and have the flu.” I just wanted to be able to get coffee with a friend without feeling like it might kill me, I wanted to be well enough to celebrate my birthday, I wanted to be able to hold my head up without support, to dress myself, climb the stairs, smile, and cook for myself. And if I couldn’t have all of that then what I wanted was to SLEEP, but no matter how tired I was, my emotional and physical anguish was too great to let me sleep. Never mind running, hiking, yoga, and traveling, I just wanted to sleep.

“Life happens for us, not to us.” -said by many.

After much resistance, I did what I was so frightened to do: I changed. I let life happen for me. No matter how hard I tried when I was fully-functional, I couldn’t get into certain healthy habits that I deeply longed for, self-discipline was always just beyond my reach…almost teasing me. Through these awful couple of years, the person I’d always wanted to be started to magically show up. I got my priorities straight, and that bulletin board of untouched ambitions, they’ve been touched. More things have been added, more have been accomplished. My space is getting more and more organized and loved. I do the things that are most important to me instead of avoiding them—less distraction, more production. I had a friend look at me in my frazzled state a few years ago and say, “you really do constantly need adventure, don’t you? I just wonder when you’ll realize that the adventure is right in front of you— you’re on it.”

I feel more authentically alive and adventurous sitting at this cafe, writing this piece, than I ever did while cliff jumping, rollerblading, or driving to Arizona just because. I’m sitting up, feeling the muscles in my neck and how capable they are of holding my head up. I’m drinking coffee, easily able to bring the cup to my lips, feeling the breeze go through my shirt, and I’m crying because it feels SO GOOD. I feel present. I’m not suffering, anxious to get home because I truly CANNOT sit up for one more second. I’m not wondering if I’ll be able to walk to the car, I don’t have a vibrating sensation of anxiety and depression bolting through my body. I don’t want to SCREAM. I’m not in a post-apocalyptic world watching others enjoy the sweetness of Earth. I’m enjoying the sweetness, and since I’ve tasted the other side (which is basically a stick of liver comparatively), I guarantee this is all the more delicious for me. This is definitely adventure enough.

I went to the beach a few days ago to ride a bike. I biked three miles and it was hard. Three years ago, I would rollerblade about ten miles by the beach and then I’d do the rings, using a tremendous amount of upper-body strength, pulling from my bicep, crunching at my core, and swinging free while the skin on my hands rubbed off from the metal. Of course I was performing such intense physical activity while my deeper desires sat at home on my desk, lonely. So, I didn’t only enjoy being outside a few days ago, I also felt so fulfilled knowing that I wasn’t there avoiding anything. I was there to enjoy a day outside. I walked to the rings, and I sat on a ledge to watch the athletes do their thing. I wasn’t jealous, observing the tanned, toned, and topless people walk around on the sand, I felt grateful for my perspective. Most of those people had no idea that in the surrounding area there were likely many trapped inside, looking at the colors of the trees from their window, listening to the birds sing, just wishing they could sit up, wishing they had a happy- enough- thought to crack a smile. I don’t need the rings, or trapeze, or my rollerblades. I get to be in the out now!

I wasn’t ready on my way to Bali last year. I was still too antsy to get back to my “old life.” I hadn’t yet refined the skill of sitting still, resting, self-care, and focusing on reality rather than fantasy. I needed more time to finalize my priorities, my habits, I needed more time to grow accustomed to my new self. I was still shedding. Now I’m beautifying my new skin. It felt, for a long time in this process, like I was sitting at an airport waiting to meet my new updated self, but her plane was like crazy fucking delayed. Some days, now, it feels like she’s arrived.

With fun and love,

Jackie

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