Growing out of the Ashes

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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 CAN. ”

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The Curse of Knowing how Healthy Feels

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I was observing my surroundings. How did I get here? I was lying on a flat table with one needle in my right arm and one in my left—the one in my right drawing dark, heavy, apathetic blood  from my sick body so it could pool in a machine where it got an expensive make-over,  the one in my left  feeding me an upgraded, strawberry-like vibrant blood. My dear friend sat next to me with a book she was reading aloud to keep me calm. Two innocent-faced,  pretty nurses that didn’t speak much English were nearby watching multiple patients. We were in Bali, Indonesia. My eyes grew fainter, my body more restless as though something inside of it was dying and fighting for life. The needles hurt, the treatment exhausted me,  I was afraid. Across from me was another woman receiving the same treatment but with no friend sitting at her bedside. How do you do this alone?  We struck up a conversation because it was weird to be receiving such an intimate treatment in the same room and not say a few words like, “hello. funny to see you here.” or something. As it turned out, we were both in the grips of Lyme disease.

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Bill Nye Saves the World?

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That is a mighty declaration Bill Nye makes in his new Netflix show’s title, isn’t it? Especially since his “entertaining” op-ed-esque message in episode two on alternative medicine is mostly destructive. Normally, I wouldn’t be interested in watching anyone try to debunk alternative medical treatments because it is just a way for me to get unproductively angry, further taxing my adrenal glands. But on a particularly boring Saturday night, I got a text from a friend, “Bill Nye has a new show on Netflix, episode 2 is on alternative medicine. Check it out—some good stuff.” We can call this friend (who I love dearly) a world-class instigator. I was already mad because considering his kitschy name—”the science guy”—I assumed it would be very anti-anything-that-isn’t -Western medicine. But masochism and feistiness won: I watched. The episode far exceeded my expectations: I was left more angry than I imagined was possible by a short 30-minute segment. I wasn’t feeling personally offended that Mr. Nye disagrees with anything slightly to the left, I was angry at the much larger effect is has on the mysteriously sick population to use your platform to sell ideas that could potentially be harmful. In an effort to turn the unproductive anger into something productive, I would like to do a little debunking myself.

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While we’re on the Topic of Women: What’s up with our Immune Systems?

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His teeth moved in his mouth like they weren’t cemented in place—were they dentures or just loose? Was it a twitch he had in his jaw that made his upper teeth push against his lower teeth rocking them forward like that? Was it just his age—will my teeth soften too one day? Jack was in his nineties, after all. That’s why I liked him so much—he had almost a century of life in him, nine decades of sorting through the garbage life can sometimes hand you—learning about humanity, empathy, and compassion.  His eyes had seen so much and his heart had held agony and released it more times than I could even imagine. I sat at a diner with him on Maui—the island I dubiously called home and the island he inhabited only in the winter, escaping Canada’s cold. Living there, I sometimes felt like I was either waiting for him to come or missing his presence—he was always on my mind. I met him a couple of years earlier when I was vacationing on Maui. I overheard him in a conversation talking calmly and precisely about the effects of growing up with alcoholism in the home. He didn’t grow up that way. It was not his path, but he seemed to understand what it was like and have a compassion that I had yet to meet. I stuck to him, maybe he became one of my collectible father figurines. I don’t really know. I only know that I wanted to learn from a man with a heart like his.  So I jumped on the opportunity to spend as much time with him as possible over those few winter months of 2011 in an effort to learn faster— I was dying to get ahead of myself, get ahead of my youthful age of 24, desperate to outsmart my humanity and escape the traps that maybe he fell into. Why, oh why, wasn’t I already at that plateau—that juicy plateau of nothingness and comfort. (more…)

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Clean Eating: My “Controversial” Diet

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I gave up booze and drugs at the startling age of 17—the age many (or most?) people are just getting started. Jaws still drop when I mention in passing that I, in fact, do not drink and haven’t in over a decade, but the news doesn’t land with the same deafening impact it did in my early twenties when my peers found such a choice to be blasphemous. I am no stranger to the often judgmental— but sometimes inquisitive— reaction I get from strangers or new friends (or even “friends”) about my lifestyle choices. Choice. If you want to call it that. But I quit drinking because it was destroying me and I really want to live…fully and vibrantly. And in order to LIVE fully, vibrantly, and, ironically, limitlessly—I now follow an extremely strict diet as well, a diet that generates the same jaw-dropping, mind-boggling reaction— “Why do you do that to yourself?  What DO you eat? Do you have any fun, ever? How do you do it?” I’d like to address these questions I am faced with almost daily.

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Treating Anxiety, Part III: Lyme disease

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“I just have a deep sense, a deep inner-knowing, that I am safe in this world now,” I told my mother one day in early 2013. It was true. For a girl who seriously suffered from panic attacks and PTSD, I had gotten so far in life.  I had worked through my issues very seriously, utilizing everything from medication to meditation, and it was all proving worth it.  Life’s anxiety inducing situations rarely spun me into a panic— deep down I could feel that the Universe was my ally, not my enemy. My risk-taking, fear-facing, and spirit-searching had left me with (what seemed like) an excess of emotional and physical freedom. And I attached to that freedom like it was my identity,  endlessly exploring my options, hopping the fences that said “no entry,”  and following my heart’s desire to go to the parts of the Earth that were untouched. I didn’t want to walk away from this life unscarred, untouched and inexperienced. In an effort to affirm this preconceived notion of myself, I took a camera man and  got my photos taken while rolling around in the dirt as an expression of my free-spirt. This attachment to identity and proving myself…it got me sick. How ironic that, in an attempt to solidify myself into one small box called “free-spirit,”  I got bit by a tick, I contracted Lyme disease from the tick,  and everything I thought I knew about myself violently unraveled.  It was terrifying. That “sense of safety” I had confidently chatted about to my mother months earlier was tested and, as it turns out, fear is a whole different beast when it’s NOT irrational. But it had to be faced and overcome because if I had acted from fear when it came to healing from Lyme disease, I would have died.

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Healthy Enough to Feel Like a Lunatic

THE PART OF GETTING WELL YOU CAN’T BE PREPARED FOR:

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I am red and dizzy, hot and overtired sitting at LAX waiting to board a flight to NYC. It’s my first time solo in an airport without wheelchair assistance in almost 2 years. It’s a flight that I’ve diligently avoided for over 2 years- unable to imagine being in New York, my home town that holds too many emotional memories; the city that never sleeps. Why would I EVER travel to the city that never sleeps when all I could do (whether I wanted to or not) was rest. I’m terrified to go to New York City. I’m terrified of the emotional and physical stress. Seeing my family has gotten harder and harder for me over the years as the less than pleasant experiences pile on, and I’m saying goodbye to my boyfriend of 2+ years (AKA my main care-taker) so he can go off on a six month-long journey of his own, and I’m doing it all on a crazy budget of zero dollars because I’m broke. Once upon a time, ESPECIALLY while living in NYC, I was capable of housing a tremendous amount of emotional and physical stress. When I got sick, well, I got TOO SICK and had no space for emotional stress. Hence, I didn’t go to NY, I didn’t allow anything “anxiety based” to infiltrate. My sole focus was, and had to be about, self-care – taking baths, eating food, and drinking water. Life  “simplified” under the  most complicated circumstances. I was just like “gimme my blanky, rub my back, I just gotta keep living.”  Now, I have this little bit extra, this bit of energy totally available for usage, and the emotional stress (of things that have little do with illness) start making up for lost time. It’s like I haven’t seen or talked to my best friend in two years so we have LOTS of catching up to do: finances, romance, family, career, friends, and exercise – there’s so much to talk (think) about! Isn’t it lucky that I’m well enough to think about things other than “where’s my fucking blanky. I need use it to block the sunlight! OK now- put Aladdin on so I can calm down!”  Well, yeah, it’s lucky and great AND somehow so much harder than I thought it would be. First of all, I’m  getting better- I’m not just SUDDENLY  better and back in my old life, flying trapeze with no trauma from the last 2+ years of needles and pills and reckless doctors. It is so much harder than I thought it would be. There’s going to be stress because I’m not enlightened enough to be stress free, but HOW do I balance as I step back into this world as a functional-enough-to-visit-home individual? How do I balance as an individual that’s just functional-enough to consider writing on all of these topics for my piece this week:

 Thursday: It seems like anxiety is coming up a lot with one of our wellness-companion clients, I should talk about my own struggles with anxiety. I’ll start off with my first panic attack when I was ten, then talk about my panic attacks in my early twenties and then about how it all changed with illness.

Then I remembered that this trip to NYC was looming. I’ll write about my relationship with NYC and how much it has changed over the years. I’ll talk about my deepest, darkest secret: that I was not only born on Staten Island, but I was raised there, too. I’ll talk about how terrifying it is to see my family and why. I’ll talk about having a new experience there because illness has changed me.

Friday: I had to go to the Department of Social Services for Food Stamps I should talk about all of my experience with needing government assistance. God, I feel like a piece of bacon in this joint- everyone is looking at me because I don’t fit in: I’m young, white, pretty, my shoes are in one piece, and I’m  not strung out. I don’t even smoke. I’ll write about how this was never supposed to be my life, my father promised me the world: my own apartment in Manhattan, any college I wanted, and support in whatever career I chose. Then he started smoking crack and the next thing I knew we were on state insurance and I had no access to doctors. Yeah, that’s what I should talk about.

And, I started writing that, but then I remembered that Ian, my partner, is leaving on a six month long journey this week.  Maybe it would be cathartic to talk about saying good-bye to Ian and all of the fear I have about him leaving. I can disclose how much I love him, and how much he’s cared for me, and how deep my abandonment issues run (well, the world knew about my abandonment issues like forever ago.) Yeah, I’ll talk about Ian and romance while chronically ill.

Then I found myself laid out in bed one afternoon very sick. I’ve been functionally sick this week, not like last year – when the stairs looked like Mt. Everest. I’ve been exhausted and in pain.  It’s not surprising that I feel like garbage: my boyfriend is leaving, I’m traveling to a place I do not want to be, I have SUCH LIMITED funds that I spent hours in a cesspool of germs just to beg or food stamps, not to mention that I AM NOT “ALL BETTER,” I’m just healthy enough to fly alone, walk, hang out with people, talk, laugh, sit in a government-run agency for 3 hours, pack,  hold space for saying “BYE I LOVE YOU,” to my boyfriend, AND actually feel all of it.  I can’t just hide from, or bandage up my truth with gratitude lists, meditations and, I don’t know, cucumbers. I’m an unenlightened and totally emotional human. So what in the fuckity fuck do I do?

I found something really interesting recently. In the text-book of Alcoholics Anonymous, it says: “Assuming we are spiritually fit, we can do all sorts of things alcoholics are not supposed to do. People have said we must not go where liquor is served; we must not have it in our homes, we must shun friends who drink; we must avoid moving pictures which show drinking scenes; we must not go into bars; our friends must hide their bottles if we go to their houses; we mustn’t think or be reminded about alcohol at all. Our experience shows that this is not necessarily so. We meet these conditions everyday…. his only chance for survival would be someplace like the Greenland Ice Cap, and even there an Eskimo might turn up with a bottle of scotch and ruin everything!…In our belief any scheme of combating alcoholism which proposes to shield the sick man from temptation is doomed to failure. If the alcoholic tries to shield himself, he may succeed for a time, but he usually winds up with a bigger explosion than ever….So our rule is not to avoid a place where there is drinking, if we have a legitimate reason for being there…Therefore, ask yourself on each occasion, ‘have I any good social, business, or personal reason for going to this place? Or am I expecting to steal a little vicarious pleasure from the atmosphere of such places?’ If you answer these questions satisfactorily, you need have no apprehension. …But be sure you are on spiritual ground before you start and that your motive in going is thoroughly good.”

For me, I can change the words from alcoholism to “chronic illness” and liquor to “emotional stress.”  Stress cannot be avoided unless I go live with the Dalai Lama and, even then, a yak might go wild and try to chase me in which case, my body will LIKELY respond with stress because I don’t like being chased. So how do I keep balanced so that when I face the scary stuff, my body doesn’t completely FALL APART? It’s an ongoing struggle. The main thing for me is to feel the feelings in my body without attaching a story to them. Or to stay in the facts. Like “I’m sad Ian is leaving,” instead of “what if Ian leaves me, meets someone else, gets hurt, gets in trouble, or decides he doesn’t want to come back to LA for some reason.” That’s what I like to call “story time,” and as many of you know, story time can be dangerously entertaining and enticing. Noticing the thoughts in my head that are 100% fear-driven and not based in reality is step one. Pausing, taking a deep breath, getting present, and stating what IS true is step two. That’s an honest place I can make progress from. Knowing that I’m sad Ian is leaving, I’m nervous about my trip, and am concerned about finances, and have a treatment coming up, what can I do to stay balanced? Here’s some of what I did and some of my game plan:

I called/ texted a few of my closest friends something like :”I’m really scared…here are all of the things that are happening, and I might need a little extra support over the next few weeks.” This simple practice gives me the feeling of support- people know what’s going on in my life and they have my back.

I called Eva before I got on this flight because I needed to talk about the specific illness/stress combo and how to combat it.

I made sure to pack some of the healthy food I need in case I can’t get to the “right kind of store” right away. Jesus, being unwell is SUCH A PAIN IN THE ASS.

I humbly got food stamps before I left so I could buy the healthy food I need. I took some yummy snacks to the office and a book that made me happy. I know how to prepare myself for the scary things that feel bad today.

I made sure to buy enough water for the plane ride.

I called my grandmother, told her I’d be coming, and that I might not have much energy. I told my Mother and Uncle the same thing. I do not plan on over exerting myself.

I take it ONE MOMENT at a time. Just do the next right thing- the advice my dad gave me a decade ago that never fails.

I chose not to see my Dad because I don’t spend time with people who ONLY bring me stress and heartache. That’s like an alcoholic going to a bar with no one and for no good reason. So, the only people I will see on this trip are the feel-good people.

I will take time each day for myself- resting, reading, writing, listening to guided mediation, going on light walks, and things of that nature.

I will lower my insane expectations of myself and allow myself to show up as best as I can, and no better than that. That means that I don’t try clean my Grandmother’s roof or like save my brother from his lifelong pain but instead focus on breathing and watching a funny movie with both of them.

I will allow others to care for me, and I will be kind to myself. I made sure to pack comfortable clothing- because seriously- now is not the time to worry about looking good.

The list goes on, really. There are endless ways for me to take care of myself and none of them will necessarily “cure” the pain, the stress, and the anxiety. It WILL be sad to say goodbye to Ian and it WILL be hard to spend time with my family AND my financial reality remains a stressful one. (Sidenote: I just spilled an entire cup of gingerale on myself in hour one of this plane ride. So my ass is now soaked and sticky. That’s not fun and also maybe I’m less functional than I thought). That’s OK. I don’t have to resist it or attach myself to the other story I have which is that “stress WILL TAKE ME OUT.” That story is scarier than the stress itself: the story that emotional pain will physically hold me down and likely never let me up again, therefore making me all the more nervous when my anxiety begins: ARE WE the smartest mammal? Illness has made me afraid of emotions in a way because, for a long time, I truly did not have the capacity to deal with anything other than just stay alive. Now, I’m here, on this plane with soaking wet pants lucky that I have space for more and learning how to balance it. In the end, yeah, I feel lucky to be alive and I feel lucky that I GET to feel it all.

With fun, love, and sticky pants,

Jackie

 

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Just Keep Swimming

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

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

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

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

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

PS: First stop after Iv treatment: FINDING DORY.

WITH FUN AND LOVE,

JACKIE

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Failing Better: On Imperfection

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May 26th, 2016:

Melissa: I just want to get an A+ at life. I want to be perfect at everything and for everyone.

Me: I’ll give you an A+ when you can accept yourself in the moments where all you’ve got is a D-

Melissa, if she knew me better, could have retorted with the cliche, “you should practice what you preach.” But since she doesn’t, I let her assume that I do imperfect, perfectly. It’s fun to pretend. In reality, just a couple of days earlier, I was shaming myself for my own D-. I was getting my IVIG infusion. I forced myself up to pee, wheeling my IV drip into the bathroom with me, strategically shuffling to avoid tangling the tubing. I sat on the toilet which leaves me with nowhere to look but at my reflection in the mirror. I instinctively wanted to shatter what I saw. Defenseless against my bullying brain and my morphed perception, I saw dark eyes swallowing the blue sparkle I once loved, pale skin dully planted on a bony face, dirty unbrushed hair, eyebrows that needed tweezing, chapped lips, and sun spots. I saw a jaded, and imperfect face convicting me of a broken, worthless life. I started wondering where I went wrong- how did I end up so sick for so long? Then rapid-fire: I’m not drinking enough water, maybe I’m drinking too much water, what if I’m taking the wrong supplements, did I eat the wrong foods, did I take a drug that interfered with another, did I stay on antibiotics too long, should I have stuck out the Cowden protocol, should I have used more money for x instead of y, I don’t meditate enough, exercise enough, I’m not positive enough, maybe I didn’t rest enough, or maybe I rested too much. What is it about the “fucked-upness” of me that is keeping me sick? STOP. I know this voice —it’s been a lifelong enemy of mine that I can’t shake; it’s always finding new ways to attack me. But what a pussy it is—attacking me at my most vulnerable. This voice doesn’t have the same power it once did because after a year of being sick, I raised my white flag and I stuck it right where the enemy dies: in the acceptance of my own humanity.

In 2006, I lived in a Single Room Occupancy at the Y on 92nd Street and Lexington Avenue. It was depressing; the walls were bare, and each corner held a pitiful piece of furniture: a twin bed, a desk, and a dresser. That room reeked of a stale, lifelong loneliness. I tried to stay out as much as possible. I was in school, and I worked long hours as a waitress, saving money to pay my brother back. Apparently, I had been stealing from him. As it turns out, when you use someone’s debit card without asking (“for emergencies only”), you’re actually using their money and that’s considered stealing. Who knew? And what IS the definition of “emergency” anyway? I sat at my desk, counting the money I had saved AGAIN, stuffed it back into its white envelope, and looked at my bulky computer screen. BLANK. I had to write a paper, but I was overcome with a paralyzing embarrassment. I rested my elbow on the desk, my head to my fist, and I heard a sudden burst of laughter outside my door. I blushed from an increasing disgust in myself, and that’s when it hit me. I’m ashamed of my own existence, I thought, I don’t deserve to be alive- even the way I breathe- it’s pathetic. I feel guilty just to be taking up space, breathing in fresh oxygen. I was having a revelation- I knew exactly where that feeling was conceived. I felt the same in that moment as I did in 1996, Seven inches shorter, and about 95% more innocent, I sat in my bedroom alone- enduring my punishment for being a burdensome human who couldn’t do anything right. Thanks, Dad. That’s where I started unconsciously thinking: how could I make myself “perfect” so that I could prove my worth and avoid trouble? I didn’t want to be too needy, too independent, too obnoxious, too quiet, too sparkly, too dull, too smart, too dumb, too sick, too healthy, too happy, too sad, too pretty, or too ugly. I wanted to land right where everyone would HAVE to keep on loving me- right in the sweet spot of super cool but not cool enough to provoke jealousy. Wow. I assumed that the self-awareness in itself would act as a cure. Knowing where my need for perfection came from would surely evaporate the need itself. My self-awareness would be a short-cut around all of the pain. That theory proved to be wrong as I stumbled through the next 8 years, torturing myself- taking little steps forward but continuously seeking a way OUT of this whole human being business.

I started reading the spiritual books, meditating, going to therapy, journaling, doing yoga, and chanting -not to accept myself but to FIX myself. I stayed IN ACTION all of the time, soaking up every opportunity to “better myself” with the ultimate goal of finding a formidable plateau exempt from a vulnerable and fragile life. But life, by definition, is growth. So hanging in some euphoric plateau would actually just be heaven (aka death). I know, it’s super unfortunate. The whole “we’re on Earth to grow” business can be such a BUZZKILL. But why is it so scary to accept ourselves as imperfect? I mean, all magnificent art is built around imperfection. I remember doing a short study with an acting coach here in LA. We were talking about being in the audition room and how all of us actors want to go into the room and do a perfect job. She said, “ No one wants perfect. We watch movies and TV to watch other humans’ flaws and imperfections. It’s your flaws that MAKE YOU INTERESTING TO WATCH. You’d never watch a movie, read a book, or listen to a song about someone who is ‘perfect.’ What a snooze.” That inspired me- what if I could just let myself be, accept myself, and stop obsessing over every little mistake I made?

After all of that work I did to avoid my own humanity, I got sick. (I feel like this is the correct time to say, “isn’t it ironic,” but I’d hate for a bunch of controlling assholes to attack me with, “that isn’t what ironic means” after I write a whole essay on imperfection. OH, that would be ironic too, wouldn’t it?). Illness: the thing you think will never happen to you until it fucking does. I remember thinking that I wouldn’t fall prey to Lyme Disease like all the other weak people did; I’d be better in two months, at most. As time “ticked” by (see what I did there?), and I wasn’t getting better but getting sicker, I turned back to my favored tool: shame. And I used it to beat the shit out of myself. I blamed myself for the illness. I must be manifesting it, I thought, I’m weak, what’s wrong with me? I tormented myself for months, maybe even a year. When my beat-downs were getting so powerful that they became life or death, I started to aggressively seek a new way. That’s when I came to the conclusion that I had wasted my life trying to outsmart my humanity. I was on a scavenger hunt for something that never even existed. Talk about a buzzkill. I didn’t need to be healthy to be worthy. I didn’t need to look pretty or be sparkly or always have my wits about me. It has been through my battle with illness that I accepted myself as a flawed human…sometimes.

I didn’t LEARN; I’m learnING. The desire to outsmart my humanity still creeps in on me in unarmed moments—like last week during my IVIG, and even this afternoon when someone mentioned that I looked tired, and I heard, “you look pitiful and weak. You’re an embarrassing disgrace.” Why do we always get so offended when someone suggests we look tired? Why is it such an insult to be human? Today, I’m capable of recognizing those thoughts as unproductive, calling a loving friend, and forgiving myself for whatever mistakes I may have made. I’m capable of allowing myself to be tired— to love myself anyway. But sometimes I spiral into the darkness, anyway. I’m failing…better.

When I was like 19, I was having one of many heart- pounding tantrums about a boy. I stood in a circle of girls on a street corner in NYC puffing down cigarettes. I was in the quick sand of obsessiveness, talking in hysterics about whether or not he liked me, when he would call, or how to make him love me again- who knows – all of those big deals were such a blur once the next boy showed up. I looked at my 3 girlfriends around me, embarrassed, feeling like I couldn’t escape my own insanity, and said, “I know- I need to get over this.Oh God, I’m being so annoying.. who would ever want to be friends with me like this.” One of my friends smiled and said, “What? No, Jackie, I love you. And I don’t love you in spite of your ‘crazy’ I love you for it.”
I had never heard such an idea expressed. I try, and sometimes fail, to love myself and you for our collective crazy- our humanity. And when I fall short, I remember what Samuel Beckett said, “Try. Try Again. Fail. Fail better.”

 

With Fun and Love,

Jackie

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How I became High Maintenance: A Top 10 List of how Illness Changed my Life

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10. I wear therapeutic bras: That’s right. One of my bras looks like the bra Robin William’s wore to play Mrs. Doubtfire. Yes, the under garments of my sexy 28 year old body are that of a 50 year old drag queen. I started experiencing regular breast pain just months into my diagnosis. I braced myself before each hug, I couldn’t lay on my belly, and it hurt like hell to take my bra off OR put it on.I had the intuitive thought one day, “what if it’s the underwire?” It did seem like every time I had a longish stint of being braless (YEAH I’m one of those lucky bitches- I don’t need a bra) I’d notice less pain. So, I tried it out. I found a bunch of underwire free yet supportive bras and, within a month, the pain completely went away and has yet to come back. Even DURING PMS, I’m not in much pain. You can hug me, shake me, accidentally bump into me, and, most importantly, SQUEEZE me. I highly suggest both sexy underwire free bras from Free People, sports bras, and SERIOUS therapeutic bras from “True& Co”- I promise, you’re even sexier for taking care of yourself.

9. I stay caught up on current events: This might seem like something I should have been doing for the last decade but, unfortunately, I was not that person. Seven years ago, I actually thought that Newt Gingrich was a town in New England, and I was like, “what’s all the fuss about Newt Gingrich- must be like the Hamptons’ of Maine.” I didn’t even know New England was a part of America until I was like 12 when my father suggested I attend college in “New England” and I cried because I didn’t want to be across the ocean. Geography is not my strong suit. So it’s pretty shocking that, these days, I’m the super annoying person that’s all, “Did you hear about Putin? The shooting? The blizzard? the oscars? Paris? Syria? Isis? Donald fucking Trump. Ted Cruz is a canadian. David Bowie is dead. Theres a new show coming to BBC, BERNIE SANDERS, abortion, immigration….” I often want to talk about the news because it’s the first time in my life I know what’s going on so I’m gonna capitalize on that shit. With illness, came a lot of time on my hands and some extra curiosity. Turns out, it’s VERY simple to stay in the loop. NY Times emails, Twitter, and some NPR, and you are swimming in information. All I really needed was a reason to sit still and Lyme Disease gave me an excess of that.

8. Phone Time: You probably loathe the idea of calling a customer service rep about something- OH just the thought of listening to that atrocious hold music that makes you question whether or not you even want a phone anymore! Yeah, it’s the worst. It’s also a part of my daily life. My speed dial consists of the phone numbers of my medical insurance, doctor’s offices, pharmacies, and my assigned case workers at various government- run agencies. It’s exhausting and, at a certain point, these calls are unproductive and actually harmful to my well-being. Therefore, I limit my calls- I can no longer attack these institutions with incessant dialing and yelling. Instead, I balance. I make one call, maybe two , a day and then spend the rest of my day not thinking about my medical “to-do’s.” I’m a lucky MOFO with lots of friends which means that outside of these “hours of operation” calls, my phone buzzes constantly. You know that airplane mode button on your nifty little device- the one that makes you appear off the damn grid. I USE IT- often. I’m an airplane mode PRO. When I need quiet time, decompressing time, or time to just be unavailable, I swipe up, click left, and take a deep breath. My phone is almost never on past 10 pm or before 10 am. Nothing is urgent enough for me- I am not the President…of anything.

7. I breathe (more deeply, and more frequently): I’m a distracted, fidgety, impatient, and excitable human, and that has been my lifelong default setting. Even when I had time to sit still or relax, I couldn’t focus. When I moved to LA at 24, my restlessness reached a new extreme. I stopped reading, watching TV, meditating, writing, or like, just sitting. I had so much extra anxiety which I medicated with work and exercise– I worked about 4 different jobs, and in between shifts went rollerblading, conquered the rings, took hot yoga, went running, and discovered new trails to explore. I did anything that induced emotional numbing via movement. I mean, I was avoiding my wildly painful grief and heartbreak-  my body was incredibly smart. I sit still today. I need to. First, it was forced and felt like torture. Now, it’s voluntary and I often enjoy it.  I need quiet time. I write for about 2 hours every morning. I average about 45 minutes of reading everyday, an hour of TV time, and 10 minutes of meditation. AT some point, every afternoon, I put my phone in airplane mode and nothing is allowed except a book or TV for one hour. I get more done now, too. Who knew?

6. I’m much tidier: About a year into being sick, I got the advice to make my home a serene, healing environment that I loved being in. I hadn’t had a “serene” environment pretty much ever in my life (except for those 2 years I lived on Maui). I grew up in chaos, and, as an adult, I was NEVER home (see number 7) so I didn’t need a nice environment. I was also a total hoarder- a saver of everything that might have the slightest meaning. I lived in survival mode so I was always like, “I might need that one day!” Things were cluttered, confused, and chaotic. Not anymore! I’m creating a peaceful, joyful, and organized living space for myself. I put things away when I’m done with them, hang my jackets up when I get home, I almost always know where my keys are, and I open bills as soon as they come in. I throw things away or GIVE THEM AWAY as soon as I no longer need them, AND..I make my damn bed daily! Marie Kondo, the NYT bestselling author of, “The Life-Changing Magic of Tidying Up,” has been my main source of inspiration. Check her out! I no longer have the luxury of making a mess and being OK with it.

5.What I spend my money on- Gone are the days of reckless spending on that shirt, that trip, and those shoes. Today, almost all of my money gets spent on supplements (hundreds of dollars a month), natural treatments like acupucture, and the most expensive food in the market. It’s hard to hustle which means it’s hard to have an excess of money to spend, and, when there is some extra money, I’m way more excited about that juice cleanse, or spirulina powder than I am about the Jeffrey Campbell shoes. I DO, of course, occasionally buy something for fun, or take a trip, but it’s always well thought out. I buy it because it brings me the kind of joy that will, in fact, enhance my physical, mental or spiritual wellbeing.  It’s unreasonably expensive to keep myself alive which brings us to..

4. FOOD- I grew up with a mother who told me “raisinets” were healthy because “at least they have raisins in them.” I grew up on powdered soups and the occasional steak or meatloaf dinner. I loved creamed spinach and creamed corn, and I considered these excessively healthy options. So, when I entered my late teens and started eating Kale, quinoa, veggie burgers, cottage cheese, almonds, and fruit, by god, I thought I couldn’t get healthier. I mean, I was a pack a day smoker but kale cancels that out, right? I had no idea what the world of wellness and clean eating actually looked like. The exclusions in my diet, today, were strategically made to 1,) starve Lyme and inflammation/ keep my body in an alkaline state and 2.) to rebuild my immune system so it can work it’s magic. I do not consume any eggs, pork, gluten, dairy, sugar, canola oil, MSG, natural flavors, corn, soy, or citric acid. This means that I read every ingredient label detecting for one of these ingredients and, if it’s on there, I don’t eat it. It’s intense. Go try to buy an in store hummus or frozen veggie patty that has no canola oil, citric acid, eggs, or soy in them. It’s hard AND expensive. What I find surprising, though, is the consistent follow-up question I’m posed with, “what DO you eat?” I mean, I eat everything that isn’t on that list which is like more foods than I could possibly fit into this paragraph. I eat organic veggies, fruit, grains, legumes, oils, meats, nuts, seeds, nut butters, and my signature 2 raw cloves of garlic a day. Yeah, I stink. I drink enough water to have earned the nickname, “Hydration bully,” and i also love me some coconut water or celery juice. But let’s get really real: I drink coffee- it’s pretty much the most joyful substance in my life, I eat potato chips that are like organic and made with coconut oil (but still..) and sometimes I cheat BIG: I’ll just say “fuck it,” and house an “In N Out” burger, or pizza, or ramen, or a cupcake, or movie theater popcorn WITH butter. It’s rare that I cheat BIG because it’s totally not worth the follow-up pain, but I don’t want to pretend to do this stuff perfectly..

3. I’m softer : UHM NO- I am not talking about my atrophying muscles, inner critic, but thanks for the reminder. GEEZ, sometimes my head is such an asshole. What I have is a softer heart and outlook- a softer experience around my own humanity and yours. Pre- illness, I could be harsh and judgmental of the human experience. My standards for humanity were irrational, unreasonable, IMMORTAL. I blamed people for their suffering, “they brought it on themselves, that will never happen to me” kind of attitude. For example, a few years back, I was very good friends with a woman who was struggling with an unknown illness, and I suggested that if she simply leave her destructive romantic relationship, she’d probably get better. Sure, I do believe that toxic relationships can do great harm to the body, but, in the end, I was blaming her. I wanted it to be her fault that she was sick. Nobody, I repeat, NOBODY, wants to be sick. I’m not so scared of human experiences today. When people tell me about their divorce, illness, miscarriage, abortion, heartbreak, financial trouble, etc.. I feel for them and hold a loving space for them. Look into Dr. Brene Brown’s talk on empathy vs. sympathy. Being sick taught me a shit load about true empathy. Today, I’m also not as demanding of myself or others. People are allowed to make mistakes in my world today. Even more importantly, I AM allowed to make mistakes today. We really are all just doing the best we can. Here’s to an imperfect practice of this thing called life!

2.Aint Nobody Got Time For That!: AKA: I have a very limited number of fucks to give. OR, the more popular phrase, I have a limited number of “spoons.”  The “spoonie” term and theory was deveoped by Christine Miserandino and is now used worldwide by sick and suffering people to describe the sensation I am calling “a limited number of fucks to give.” When you are a healthy person, each day comes with an unlimited number of possibilities, but when you have something like chronic illness dictating how many possibilities you get that day, you are a “spoonie.” The idea is that we wake up in the morning with just a few spoons to use and each time we use one, we’ve got one less- our energy is a little more depleted. So we have to be strategic every. single. day. My strategy: I do not welcome anything into my life that doesn’t support me emotionally, mentally, or physically. I’m on a mission for total wellness. If it doesn’t enhance my spirit or my health, it GOES. For me, that included a few relationships- those hurt the most. The best advice I ever got around illness is this: “Do what feels good all day long.” It’s amazing how when I started focusing on only the things that feel good, how much more I started saying NO to people, and how much started falling away from my life. When it was life or death and I was forced to put my every action under a magnifying glass, I realized that I was engaging in a lot that didn’t ultimately serve my highest purpose. What an incredible awareness!

1.I’m an insomniac- I have NEVER had sleep issues. I didn’t know jack about how painful insomnia was. My brother, on the other hand, has been suffering from it all of his life. When I was a kid, I’d wake up all casually well rested (like an asshole) and I’d pass by my brother’s room and see him in some sort of rotated, mutated form, looking like a wild animal that had taken a tranquilizer dart to the face mid outburst and finally, with one last squeal, passed out. He could never wake up in time, he was always moody, and I judged him. No wonder he hated me. When I got sick with Lyme, it came on slowly. First, I just couldn’t sleep through the morning sun. Then, I had a hard time falling asleep. And then, nine months later, I STOPPED SLEEPING. First I tried household drugs: Nyquil, benedryl, and dramamine- sometimes, feeling desperation around 3 am, a combination of a few. Nothing worked. I was now not only sick, and on zero sleep but also heavily drugged and emotional. I started crying all of the time- just constantly. My good friend always reminded me that sleep deprivation is a legitimate form of torture used by military systems worldwide. It’s true- watch Zero Dark Thirty, or Homeland- sleep deprivation is the first tactic. Just imagine being more exhausted than you’ve ever been and incapable of sleeping for nights on end. People are always confused, “But if you’re exhausted all of the time, shouldn’t you just be able to sleep?” Jonathan Franzen says in The Corrections, “his tiredness hurt so much it kept him awake..”  That’s what it’s like. My face hurt, my body hurt, my anxiety was unmanageable. When it came time to try to sleep, it felt like Satan was taking control of my body. I’m NOT kidding. To date, I have been prescribed Trazadone, Ambien, Valium, Kolonipin, and tried every natural version of sleep medicine you can name. I have had varying experiences with each drug. Nothing truly worked, guys- not until I started getting healthier. I could be awake for a full 60 hours in terrible flares. I could have walked 5 miles in a day, or done yoga, meditated, stretched, had no caffeine, done an infrared sauna, not eaten for 3 hours before bed, watched something soothing, listened to whale music, classical music, EMDR, focused on my breath, prayed my ass off and/ or done ALL of those in one day AND, STILL, NO SLEEP. Any solution you had for me, I tried. These also came with varying degrees of success rates. I’ve done yoga, taken a hot bath, popped a valium, then had my back rubbed while I was sung to and, GUESS WHAT, NO SLEEP. That shit is rough. Today, I sleep. I don’t sleep well necessarily, but I mostly sleep. Sometimes it’s with the assistance of Valium but more often it’s with “Tranquil Sleep-” the most potent natural sleep aid. I focus on my breathing, I don’t let the negative thoughts take over, BUT, when I’m in super bad shape physically, I still can’t sleep. IT’S PART OF THE ILLNESS, and it sucks. I repeat- the MAIN thing that has made my sleep better was getting healthier. I beg of you, be compassionate and understanding and loving towards people who cannot sleep (whether they are sick or not)- including yourself.
If you stuck with me for this long and read all of those then I have a little gift for you. I have a number “zero” bonus feature. Guess what I talk about now more than ever in my whole damn life? Did you guess Bowel Movements? That’s right. Us sick folk are just CONSTANTLY being asked how our bowel movements are. And then, we start talking about it together or doing things like coffee enemas. My dear friend and business partner for “wellness companions” sent me a coffee enema kit and said, “we can Skype for your first one in case you need help!” NOTHING WEIRD HERE, GUYS… just all of us trying to manage our own shit and stuff.

With Fun and Love,

Jackie.

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