We left early in the morning for Sequoia National Park last Tuesday. I woke up excited for an adventure—a new place, lots of rocks, big trees, and people I love to share life with. I showered, put on in-the-car clothes, double-checked my suitcase for hiking boots, warm socks, an iPhone charger, and sunscreen. We had booked the trip a couple of months prior—my uncle and I debated dates and national parks on the Facebook messenger app ( I’ve found it secretly amusing for years that Facebook is our primary form of communication). When he initially asked if I would be able to join him and my Aunt in Sequoia, an intoxicating joy shot through me— an appreciation for a healthy life that I can’t imagine will ever find its way to evaporation.
“I’m so horny! It’s killing me,” I whined, steeped in sexual frustration, in the backseat of a Toyota on Sunday afternoon. Three of us were squeezed in the back seat—two of my closest friends and me— and they had been listening to me have random sexual outbursts all day. Ian is on his lengthy- as- fuck dream trip, and I feel a little…insane without him. “I barely even masturbate,” I yammered on, “it bores me these days, just makes me more sad.” My friend is a talented energy healer, and we’ve worked really well together in the past so she said, “OOOO, I wonder if I could try some sort of energy work on you where I could get you to an orgasm without even touching you. I’ve never done it, but it’s so fun to work with you because you’re so open.” Me, so open? I thought. “Hah. remember when I was NOT open to any of this nonsense,” I retorted, “And, YES, let’s absolutely do that!” I feel baffled when “healers” of any kind suggest that it’s so wonderful to work with me because I’m so open and available. That was so not me. Pre-illness I had the “luxury” of being healer-phobic, the “luxury” of judging people, the “luxury” of being closed-mided, the “luxury” holding onto resentment and anger, and the “luxury” of eating a nightly waffle sundae.” We piled out of the car to stop in at an organic, over-priced, crystal-decorated Malibu eatery. It was the kind of place that attracts all of the wealthy white people on green-juice fasts who are willing to pay $15.00 for a tube of coconut oil and $175.00 for a beach towel. Did I think it was ridiculous? Yes. Did I love it there? ABSOLUTELY. The wall of supplements made me feel candy-shop-dazzled, the all natural body butter was enticing, and, oh my god, they served vegan, gluten-free and SOY-FREE grilled cheese. Heaven. All I needed was Ian near me, and I would have had an orgasm right then. Yes, all-natural sunscreen and kale wraps turn me up and on. No shame here: I’m an oil-pulling, green-juicing, meditating, all natural healing… weirdo. It gets worse: Over our new-age grilled cheeses, we talked astrology. I know very little about astrology, but I love when people talk about it. Let me rephrase: I love when astrology-interested folk want to talk specifically about me and my sign. We were looking at my chart, and our astrology-savvy friend took note that one of my moons was in one of my houses (blah blah blah) , therefore, I’m a “wounded healer.” My eyes got all big, “wounded, healer,” I squealed, “Oh my god! My distance healer just told me that one of my archetypes is a wounded healer! How cool!”
How cool? What in the ever-loving fuck is this life?
I grew up eating raisinets for a healthy snack and drinking coca-cola with meatloaf dinner. I suffered from panic attacks and lots of random infections all treated with…you guesssed it…antibiotics. I breathed in smoke and mold all day, was harassed by my father, tried to take care of my mother, and lived in a fantasy land most days because it was safer than reality. By highschool, I had bronchial infections every couple of months, and I lived on cheez-it’s, salami, funyons, the hangover BLT, and hazelnut iced coffee with tons of half and half. I self-medicated my anxiety with drinking, smoking in excess, and instigating unruly sexual situations that numbed the pain of my missing father. Self-loathing began intruding on every waking moment of my day activating my first major step toward a healthier living.
I cleaned up my act and stopped drinking. I bought a sports bra, got a membership at the 92nd street Y, started drinking some water, and ate some cottage cheese between my late-night waffle sundae binges. I thought I was the healthiest. Only the healthiest people eat cottage cheese and own sports bras. Then my panic attacks resurfaced with a vengeance. When I was one meltdown away from becoming agoraphobic, I started taking anti-anxiety meds. I thought I oughta also dabble in meditation since I didn’t want to be on meds forever so I attempted a ten-day silent meditation retreat. I made it three days and claimed, as I left, that I just wasn’t meant to be quiet. I nearly lost my mind sitting with myself in the darkness and silence—there were too many painful memories, there was not enough coffee, and no space to exercise. No, thank you.
Those three days validated my experience with holistic approaches to healing—they weren’t for me. I was madly-pro western medicine: Bring on the quick-fixes, the distractions, and the antibiotics! When it was convenient or it was necessary, I was down to be spiritual, but it was always short-lived. I never wanted to be TOO spiritual. A little bit of toxicity felt sort of YUM to me; I brought the FUN to dysfunctional. And I loved me some fatty beef.
Something about being a sweet, peaceful vegan seemed so stale and virginal to me.If I could stay just a little edgy, a little hardened, I’d be more interesting, I thought. I wanted to be only half in touch with myself, only somewhat open-minded, and the adrenal burn-out version of healthy which looks like too much excercise and distraction while chowing on some kale every once in a while. The mention of eastern and holistic approaches to medicine and healing made me tighten. It was like people were talking about crossing an ocean in a row-boat—haven’t we got better things to do and my god, that sounds like unnecessary labor, hello, there are cruise ships these days! But, Jackie, cruise ships are bad for the environment, you said. “Well, I’d rather ignore that so I can get where I’m going faster, thank you.” It was true, I sort of (gasp) didn’t care about the environment, the toxins in the air, in my food, or in my water bottle. Not to mention my distaste for chakras, angel cards and acupuncture. What a snooze fest! I had already given up booze, drugs and cigarettes, did I really need to go full-on new-agey grandma? My judgments were just a way of covering up my extreme discomfort around “super spiritual.” I wasn’t ready to be seen. I was full of untouched trauma, stuffed to the brim. I felt like “Healers” had some sort of special powers. . .like they were the only people in the world who could see my thick and vast unbecoming wounds. Healers made me feel like my mask was being forcefully ripped off of my face, like all of the grime, sadness, jealousy, and petty resentment that I was hiding from the world— was suddenly visible. So, when I came into contact with one, I either got the hell out of there, or I put a thick wall up—pretending to have no feelings. I had spent a couple of decades trying to keep my toxicity IN and under control, undetected.
My best efforts to control my humanness got me Lyme disease. And my best efforts to get well from Lyme disease—which included tons of antibiotics and distraction—got me much much sicker. The cruise ship I was on capsized after ten long months of doing it “the fast way”of western medicine. I was left with that damn rowboat. And, if I was going to survive, I was gonna have to get in and start rowing—slow and steady —with a shit load of patience. I was afraid of sitting with myself, slowing down, going soft, needing help, being seen, vulnerable and human. But my options were to go “there”—into the darkness of my soul/my truth with love as my main form of protection— and heal from Lyme, or to avoid “there” and probably stay sick. I surrendered completely. I was willing to be seen and to go into the pain so that it could lose it’s power over me became my focus.
I did everything anyone suggested from Ozone therapy, supplements, herbs, and body work. I changed my diet, I took the herbs, I meditated more, acupuncture became a weekly practice accompanied by chinese herbs, and I worked hard on self-love. And then—my biggest challenge— making friends with healers. Opening my mind so much that I could actually believe, for just a second, in something as silly as astrology. GASP. But it helped! And then, reiki. And that helped. And then water blessings and neuro- feedback, group meditations, yoga, prayer, chakras, crystals, and getting hugged by Amma. My body sucked up this new way of life, like I was a plant that hadn’t been watered in a decade. I became a person that craved group meditations, green juices, acupuncture and reiki. Love gave me sunshine and alternative-medicine (in whatever form) gave me water, and some time later, I started to fucking bloom.
Becoming open to any possible form of healing has made me free— my life has become boundless with so many options. Yeah, I’ll talk about the power of crystals with an open mind, yeah I’ll talk about intuitions, heart, and powerful candles. I’ll also talk about all of the western approaches to healing that work—western medicine works when used correctly. I don’t give a shit what we are talking about as long as it’s something that helped someone else get closer to wellness realized. I light candles and I turn on an essential oil diffuser, and I sit on a yoga block while I practice breathing into my belly—INTO MY FIRST CHAKRA. I believe in magic because why not? In my experience and from what I’ve seen, you have to believe a little bit in magic and pixie dust if you want to beat Lyme disease. Beating Lyme disease isn’t even my priority anymore—thriving is my priority, and I won’t let any of my judgments, my resentment or my fear of being seen fully as a human get in the way of my best life. Healing from the inside-out is healing that lasts. I don’t know about you, but I intend to thrive for many many many many years to come.
With fun and love and weird ju ju,
PS: Please use your discretion when choosing people to work with! OK? My “team” came highly recommended to me by people I trust.
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.
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 TonyRobbin’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 “SkidrowStories,” 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.
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.
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.
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.
“…But let there be spaces in your togetherness, And let the winds of the heavens dance between you. Love one another, but make not a bond of love: Let it rather be a moving sea between the shores of your souls. Fill each other’s cup but drink not from one cup. Give one another of your bread but eat not from the same loaf Sing and dance together and be joyous, but let each one of you be alone, Even as the strings of a lute are alone though they quiver with the same music. Give your hearts, but not into each other’s keeping. For only the hand of Life can contain your hearts. And stand together yet not too near together: For the pillars of the temple stand apart, And the oak tree and the cypress grow not in each other’s shadow.”
Khalil Gibran, The Prophet: On Marriage
Ian, my partner and main care-taker who I started dating just a few months after getting sick, just left on a six-month long trip. GASP. I start round 4 of IVIG today and he’s not here. DOUBLE GASP. Shocking, I know. To ease the blow, I’d like to address the question I continue to meet: “Oh my god, Ian’s leaving for six months… WHILE YOUR SICK. ouch. You’re OK with that?” In short: “abso fucking lutely” (to quote Big from Sex and the City). I have the relationship that I’ve been dreaming up since my days as a school girl, if you can believe it. Yes, he’s “leaving me” to go on his trip while I’m sick. HA. That’s one way to put it. Here’s how I see it: Ian is living his life, he’s leaving for six months because he has an epic dream to fulfill and Lyme Disease doesn’t steal dreams – neither do I. You know what else I keep from infiltrating my life and controlling me/ my dreams/ my relationship? Fear. I choose to see this time apart as a blessed time that I get to have my own evolution, focusing solely on my recovery in mind, body, and spirit. I imagine that when he and I meet again in a few short months, we will be all the more equipped to love one another wholly and truly. I wasn’t always this way. I just reread that sentence and was like, “who wrote that? Not me.” I got to this particular relationship after a grueling trek, escaping the many booby traps set for me, and learning my lesson the super fucking hard way.
My undeniably defective childhood really worked in my favor — it was like receiving the “Everything you Should Never Do: Rules for Life” handbook. I’m forever grateful to own that book. I flip through the metaphorical pages for reference every single day. Like all of us, as a child, I was a victim of circumstance. I was in an abuse cycle with no freedom or insight to choose otherwise. I look back on my childhood only with a deep sense of relief that it’s OVER; that I can wake up in my own bed and choose who comes in my front door. When I tasted some personal freedom at the age of 13, I was quickly addicted to the power of choice. I do not want to be held down by anyone or anything. I run away when I feel controlled. I watched my Mother suffer, making faulty choices, under my Father’s tyranny. We all suffered, and I vowed to never be a pawn in a dictatorship dynamic again. I would never marry someone I didn’t love (like my mom did). I would never marry someone like my dad. I would never raise a child in a home like that.
The only sure-fire way I knew to get around my nurtured instinct (which was to date alcoholic assholes) was to date “safe” people. I moved all the way to Hawaii with my low-risk-assessment investment. I moved to Maui (arguably one of the most romantic places on Earth) to participate in a passionless romance. We bickered like an old couple in a scenery that demanded loving with abandon. He was wonderful, sweet, soft, safe, and everything my Father wasn’t so I spent nearly four years convincing myself to stay, and I grew to love him very much in that time — like he was my big brother. He was my excuse, in fact, for why I was unaffected by my childhood …see, I’m dating a totally normal, nice man, I don’t need therapy. I could have settled and stayed, but it would have been out of fear. I knew I wasn’t happy, and I was the great protester against the restrictions that fear conceived. I wanted my freedom, and I took it. I left for Los Angeles, ready to grab the big-life I craved by the balls and have my fucking way with it. I left vowing to NEVER end up in a passionless romance again — safe or not — it wasn’t worth it. The next person I was with, I decided, I would crave and love and feel an intense physical desire for.
I got what I wanted. I met a charismatic man who met the criteria: I craved him, all right. I was addicted to him, obsessed with him, unable to exist without his validation. The ups and downs were more extreme than my previous experience with hard drugs. At last, my childhood trauma caught up with me, and I had met my Father in age-appropriate, rock-star form. Our turbulent relationship held the potential to completely destroy my life. I almost did everything I vowed never to do: marry someone I didn’t truly love, marry my Father, BE my Mother, and raise a child in an almost identical setting to my own loathed childhood. I suffered so badly in the cycle of abuse and insanity that I still wake up almost everyday grateful that it’s over. It’s over because I fled. I got the fuck up out of there, this time deciding that if my only options were “passionless,” “abusive,” or a horrifying combo of the two, then I would happily live out the rest of my life SINGLE.
Totally defeated, I sought help. What was wrong with me? I had a lot of work to do, and for some reason– that I can only describe as grace –I was prepared to change. I wouldn’t even go on a date, let alone flirt with a person of the opposite sex for about 4 months. I had spent at least ten years using sex and coquetry as a way to legitimize my existence and suddenly, swiftly, I was different. I began dating. This time, I didn’t throw myself into a mosh pit of men. I sat and observed, confident and patient, waiting to be asked to dance and then, if satisfied, perhaps we’d dance again. No rush. I had a sense, a deep intuition, of what I wanted. “I want a man who I want to do everything with; and a man I don’t need to do anything with,” I stated over and over again.
Fun fact: Ian is actually only in my life BECAUSE of Lyme Disease. We share a mutual bestie who suggested we meet (platonically) since we had similar struggles with chronic pain/illness. If Lyme brought me him then it’s all been worth it.
I was undeniably attracted to him and intrigued by him but what really won me over was his uncanny ability to leave me the fuck alone. Here was a man who did not pester me, that wasn’t needy, jealous, or controlling. A man who knew how to ask me out, to take me out, to compliment me, respect me, show me kindness and love, and then disappear for a few days because HE HAD A LIFE, and I wasn’t prematurely at the center of it. We dated for three months before we committed to one another. I knew I was falling in love with him one sunny day in June, just a few weeks before we had “the commitment talk.” I knew I was ready to venture into a relationship with him, but I didn’t know how it would go. With help from my friends, I lived in the day and not in the future. I was present for each new development staying “properly invested” as my dear friend Laura would say.
How it has gone? Better than I could have EVER imagined. The love between us is fierce and grounded; stupidly romantic and entirely “realistic.” A friend once told me that “maturity is delayed gratification.” I have spent the last couple of years with Ian endlessly gratified because of the solid foundation we slowly built. Don’t get me wrong: He’s a super annoying MAN: he has a poor memory, he’s messy, and he has this ridiculous tendency to rob homes of all of their coffee mugs. My own cabinets have been depleted of mugs to which he responds, “drink coffee out of a bowl!” No. And, oh my god, all of those things bring a goofy hormonal smile to my face. He’s just my favorite human. So how have we had such a successful relationship in the midst of illness? Why hasn’t he left me after all of the crying I’ve done, and all of the fun I lack? How is it that just when I believed I was at my least lovable and least sexy, I found the true love of my life, and a man who makes me feel sexier than ever? And– WHY IN THE FUCK AM I OK WITH HIM LEAVING FOR SIX MONTHS?
Ian is no stranger to chronic pain and though he is one of the most active people I know, he, too, has been through various struggles of the body which has been a breeding ground for compassion. He also just so happens to be naturally good at putting himself first while simultaneously being a present, and caring partner. I remember the first time I cried in front of him. I broke down, saying things you pretty much never want to say, “Do you think I’m pretty..?” etc.. He held me for a while, comforting me, “You’re so beautiful and great and special and smart..” and he kissed me everywhere, and then he LEFT. Hahahahahaahah. He left me in tears. Thank God. Ian has taken such great care of me while never losing sight of his own personal goals and ambitions, and I have taken great care of myself while being a supportive girlfriend, and never losing sight of my own personal goals and ambitions. It’s hard for resentment to grow in a garden like that. I have a support network that extends way beyond Ian, and, more often than not, he is NOT my first phone call when I am in crisis. I, personally, have to be aware of my tendency to look for my adult partner to fill the role of “parent.” My first step is always to meet my own needs. Talk about freedom: a life where I meet my own needs/ parent myself.
So when this long-term trip came up, a trip that he has been attempting/planning for over 3 years ( before I came into the picture), I got on board to support him (sometimes ungracefully). I want to be a catalyst of my partner’s growth, not a hindrance. I remember once when I was itching to get Ian to TELL ME WHAT TO DO about a career path. I said, “You’re supposed to tell me to keep acting. You’re supposed to tell me that that’s what I’m best at and I shouldn’t stop. ” Blatant Subtext: I need validation. He looked at me, obviously unwilling to give in to my childish demand and said, “I will support whatever makes you happy. That’s what I’m supposed to do. I trust you.” A world where I get to do what’s best for me and not try to fit in the mold “he’s” prematurely created for me to make him happy? Genius. And I long to do the same for him. I trust him, and I believe he needs to do this trip. This doesn’t mean that I’m not afraid. I have fears by the dozens: What if he gets hurt, what if he meets someone else, what if he falls out of love, what if I fall out of love or meet someone else, what if he doesn’t want to come back, etc.. It’s just fear, “story-time” if you will. Control is an illusion anyway so I sit powerless, in the certainty of uncertainty — enjoying the journey, watching it unfold — taking care of myself and wishing him the best trip.
I recently had a life-changing energy healing session, and this particular Reiki master said, “if I had a prescription pad and needed to prescribe a treatment for Lyme Disease, I would simply write ‘love yourself’.” Love starts with self. “Give your hearts but not into each other’s keeping,” as Khalil Gibran writes.
Fun and Love,
PS: If you’re having struggles with your relationship, I suggest you reach out Here
Since 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.
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.”