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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No Inner-Child Gets Left Behind

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Stored trauma is Lyme disease’s best friend. They play off of each other like school yard bullies relentlessly tormenting the mind, body, and spirit. Lyme is an opportunistic disease and tends to jump on those whose systems are already compromised. Personally, I had a weakened immune system from years of infections and antibiotics, I had been breathing in mold and smoke all of my life, I had those heavy -metal- filled amalgams in my mouth, and I had—maybe most importantly—a shitload of stored trauma. Healing the past has been a vital part of  my recovery; I went into the basement and the attic and met the old memories, had a new experience with them, and then went to the freakin’ Materials Recovery Facility where they got recycled into something new and sparkly.  But how to do that? Getting sick stripped me of all of my effective coping mechanisms. I had nothing— no distractions, no booze, cigarettes, cake, no over exercising, and no late-night coquetry (well, Ian got some of that). I had only myself—a self that was ignored for most of my life, a self that I was scared of, a self that I often absued. Caring for myself and healing all of the built up heartache meant getting in touch with my inner-child (yup. deep breath. I am talking inner-child work. It might get weird. But if you’re here to save your life then maybe it’s time to try weird shit?)—that little girl inside who had been shouting out for attention for two decades. The little girl who I just kept hushing, “you want to rest? Well, too bad, I want to party.” We were going to have to team up to fight this thing. I was going to have to pay attention to all of her needs. My parents weren’t showing up for me and I was either going to cry over that every single day or take the power back into my hands and “re-parent” myself. My boyfriend and my friends made an incredible support system, but there were too many times where I was left alone and panicked. It’s frightening to go into the darkness alone—naturally, we want someone to hold our hand through the haunted house tour. And that’s ok. Hold a hand. God knows, I hold so many hands. But, acquiring the art of being my own primary care-taker while everyone else acted as support instead of the other way around enhanced my life, my freedom, and my health.  I needed to find a way to rely on myself, to hold myself through the hard times, have my own back, and thoroughly heal from all of that old nasty trauma.

I was an adult before I ever got to be a kid, and I was pissed off about it. Full of resistance, I sought people out who would care for me the way my parents never did. Collecting father figures and mother figures was my favorite hobby—I had a whole china closet full of them and, yet, no real fulfillment. My collection brought me short-lived comfort; my internal-void remained. I was introduced to inner-child work in 2013  when I was detoxing from a wildly fucked up romance. In an effort to snag what little dignity I had left and not text or call this dude, my friend suggested I start telling myself everything that I wanted him to tell me. When the quick-fix cravings hit, she would say, ” put your hand on your heart and say, ‘I love you. I’ve got you.’Imagine a photo of you as a little girl that is just so cute and precious and start taking care of that girl.” I was down. Anything to get my life back. I found myself picturing my little self and organically saying, “I’m your guardian now and I’m going to take really good care of you.” That became my mantra. I said it all day ,everyday, so that I could make positive choices for myself: like going on a hike instead of calling someone who would inevitably hurt me. I practiced just enough self-love to keep me from getting involved in another demoralizing situation, and (for the skeptics) I’m here to tell you that my practice paid off—I have been blessed with a beautiful relationship. However,  when I got bit by a tick just six months later,  my inner-child got tossed away and quieted again. She suddenly needed way too fucking much from me (sick people are needy as fuck), and I had no idea how to give it to her.

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I spent a long time beating myself up for being sick—maybe a year. It felt like my fault, like I was weak, powerless, or had bad Karma. There were moments where I was so angry at myself for not being able to “pull it together” that I considered physically harming myself. I couldn’t stand the sight of myself in the mirror. Every single day was agony. I couldn’t tell what was worse —the physical symptoms or the way I emotionally tormented myself. My internal dialogue went on repeat, “Get better. Be better. What is wrong with you? You’re disgusting. You’re weak.” Oh hi mom and dad!  That voice started keeping me awake at night. I lied in bed seething in pain and with a monster in my head, “you’re faking it. You’re not even really sick. This is just a ploy to get people to pay attention to you. Stop being so afraid. You’re not dying. You are being SUCH A BABY.” I only got sicker. Shockingly, that cruel self-talk wasn’t doing the trick. I was not “pulling myself up by my boot straps” at all. In fact, I was getting to a point where I could hardly put on my own shoes. As my symptoms ramped up and not a single doctor had a complete answer, I got willing to do whatever it was going to take—to do whatever was in my power— to get well.

I said farewell to the audiobook “A People’s History of the United States” which took up  most of my cell phone space with its 35 hours of “entertainment” and purchased—instead—self-help books like, “SelfCompassion,” by Kristin Neff and “You Can Heal your Life,” by Louise Hay. I listened to those calming voices preaching self-tenderness in the car, in bed, and while I made myself food. I was in research mode, a good student of self-love, entirely teachable. It was one thing to care of myself enough so that I wouldn’t reach out to a toxic dude, but how do I take care of and love a sick person? Like a really sick person?  I went practical—the basics— I started with the 101 course, if you will.  I used to work in childcare—I have looked after hundreds of children of all ages. I used my behavior as a caregiver  as my blueprint for my own self-care.  I would never let a child go hungry or thirsty or without sunscreen. I wouldn’t let a kid fall asleep without brushing their teeth and listening to a calming story in their comfiest PJ’s. If a child woke up afraid, I would comfort them.If they were too hot, I would take layers off and give them some water; too cold, I would give them layers and hold them tight. It seems so simple, but I certainly wasn’t that careful with myself on a daily basis. There’s no “age plateau” where we stop needing those simple things; we just get better at tolerating the discomfort.  I had to learn that it didn’t make me “high-maintenance” to need the basic human comforts. I didn’t let myself go hungry, thirsty,  without a nap, or without my vegetables. That was a tremendous beginning for me, but it wasn’t nearly enough.

My insomnia was a son- of- a- bitch. When hard-drugs weren’t working, I needed to find a way to soothe myself enough into a sleep. That’s how I started a dialogue with “little me.”   I would put one hand on my heart and one on my belly and picture little Jackie. My imagination— which sometimes works like the Beauty and the Beast mirror— showed me a toddler. She sat alone on a metal folding chair in the middle of a dark room. Her shoe laces were untied and she wore grungy sweats. She was so lonely, afraid, and dying for someone to come save her.  And, in my head (because, hello, Ian sleeps next to me and I was still trying to seem *somewhat* normal) I would tell her things like, “you’re OK, I’ve got you. I know this is so so scary. And I know you feel so bad. Yes, I feel that crazy pain all through our body. It’s real. I’ve got you. I will take the best care of you that I can. You’re not making this up. I love you.” It was usually the only thing that would calm me down. And, eventually, I started imagining myself hugging her, and ASKING, “what do you need little Jackie?”  And then I’d listen. This is truly one of the fucking winning practices in healing. My inner-child is smart as fuck. Every single time I ask “what’s up?” she’s like, “this is what’s up! Please fix it!”  Sometimes, she wants things like Advil or a cool cloth and other times, she wants a hug, but A LOT of the time, she really wants to have FUN and be free. It’s my job to give that to her. When a child is sick, parents do the bulk of the work to get them well, right? A Doctor only steps in for prescriptions and a diagnosis. So, it only makes sense, that we need to constantly care for ourselves the same way.

I was getting noticeably better. I had  this direct line of communication to my inner- child.We were having ping-pong conversations before I knew it, and I started knowing exactly how to care for myself at all times. I no longer saw little me in that lonely metal folding chair. She grew up a little bit, wearing bright colors and a high ponytail. She was healing and needed to play and be free more and more. The more I did this, the healthier I got, and the less I needed from others— including my parents. Being able to meet my own needs time and time again left me feeling, ultimately,  free.

Now I’m in the home-stretch and I’ve got this one problem: there’s a wildly hurt teenager in me that i really do not want to commune with. So much damage was done in those years, they were the most dangerous years of my life—because my parents were more unreliable and more destructive than ever, but, on top of their ruination, I was harming myself.  I turned all of my anger inwards and started self-medicating to make the pain stop.  I remember once around 16 when I was so stoned I hadn’t stopped laughing for three hours… or maybe 30 seconds? There was no such thing as time. I said to my best friend, “You know, if I ever met myself, I would absolutely hate her. We would never get along.” We both laughed so hard, knowing it was true. I hated myself. I shudder thinking about those years, between the way I behaved in public and the lunatic man who merely resembled my dad that lurked around corners in my “home.” So, can’t I just put that all to rest? Tie it up in a neat little box, pack it away in the attic, and just forget about it?  Apparently not.

I sat at my shrink’s office confessing how deeply I’m aching for Ian, (who’s Ian? Keep up!) the man I love who I don’t get to join on his big adventure for another 4 weeks. “I don’t know. We are both in so much pain. And it’s sweet, but it also feels just…excruciating,” I said. She suggested, like a good pain in the ass shrink, that it wasn’t just “love” and just “missing” each other, but that it may be something deeper. Something probably relating to my family of origin. ugh I had to open my big mouth about Ian. Here we go again. “Really? I think that’s maybe a psycho-babble stretch. I mean, how many times am I really going to miss my dad?” I retorted. “Exactly,” she said, “I think you miss your dad. That’s not to say that you don’t miss Ian and love Ian and that you guys aren’t yearning for each other. It’s the excruciating pain you’re experiencing that I think might have something to do with your dad.” With the same immediate shock value of a popped balloon, I broke and started to cry. Oh, fuck.

I kept that idea safely on the periphery for the next few days, not letting it quite into or out of my sight. I got on Skype to do a distance-healing with the dazzling, vital, sweet and madly intuitive  Emily, and as I detailed the week, I mentioned the possibility, “My therapist thinks that Ian’s departure has opened up my “dad” wounds and that all of the hollow emptiness I feel in my heart is actually from my father. I mean, whatever, it’s almost too obvious. So obvious I don’t really buy it.” But Emily, bless her,  was intrigued. I had to open my big mouth again. Thankfully, her instict had been precise on earlier occasions so I trust her. In our work together that day, she had me travel back to my past, finding the moment that left me with that hollow emptiness. In my meditation,  I found this one tragic scene from when I was 17—the day I watched everything I knew about my nuclear family collapse in on itself. Emily had me watch the scene play out and then freeze everyone and everything except my younger self and my present self. Everyone was frozen —my father froze mid-stomp on his way to attack me, my mother froze with her head in her hands crying in the car, and our dog froze in a frantic bark. Emily said, “approach your past self and tell her all of the things that she needs to hear right in this moment.” I slowly approached her, feeling very skeptical. I judge her, and I don’t know how to comfort my teenage self. She’s so stabby.  So I started with the basics again. I took her by the hands and brought her to the curb to sit down, I got her some water, and I took her bubble-gum pink leopard coat off. It was a warm day in October and she was covered in sweat from running, screaming, crying, and being dressed in 1,000 awesomely torn up layers. I fanned her off, helped her breathe and got her some food. I parented her. All things that I needed that day, that year, my whole life. Finally, I was able to say some kind things, “I love you. it’s ok. you’re ok. You’re beautiful, and you’re doing the best you can. Don’t worry about your dad. I promise you are loved.” My 17-year-old self was feeling calmer and calmer, and as I walked her back to the car, to finish out this scene, I said, “I really love you, and I promise dad is just high. This isn’t about you.” My past self turned to me with a smirk, totally cool and calm, and said, “thank you, you know, I don’t even like him that much. I think this day is actually the beginning of my freedom.”

I realized, as I came out of this time traveling experience that once I gave myself all the love I needed in that moment, I didn’t need my dad anymore and the experience completely transformed—from one of traumatizing heartbreak, to one of total freedom and joy. I also—wait for it—didn’t feel empty without Ian. With the willingness to heal this part of my life, I’ve had more and more memories surface over the last few days leaving me feelng irrationally unsafe in this world. That’s the risk of doing this work—all the stuff really does fucking surface. But UP AND OUT, BABY, my body has limited storage space and I need room for joy! I know now to go into the darkness, to let it surface, and heal it instead of ignoring it and powering through. Because no matter how much I try to fight it with my mind, there are things that my body will not let me forget.

Two nights ago, I laid awake panicking. Why, I wondered, while tears soaked my pillow, why am I especially panicked in my own home, in my own bed? Why, in my unscathed, sweet home today, do I feel terrified, like someone is lurking around every corner. I thought I’d ask that teenage version of myself what was up since that has worked so well in the past. Again, I was willing to do what it took to fall asleep. I did the ol’ trick: one hand on my heart, one on my belly, and I asked, “what is going on? Why is it at home that you’re so afraid?” In my imagination, we were sitting on the same curb outside of my teenage “home” that I comforted her on in my last meditation.  She said, “Well, it’s not outside that’s scary. It’s in there,” she nodded to the front door, “that’s where I fear for my life.” Ding ding ding.  My home was always the scariest place to be. There was no resting in my house, resting left you vulnerable to god knows what. By high school, I was realistically safer outside of my home. So, of course I feel like enemies are at every window or just outside of my door. Of course. But I am safe now. In this present moment, I have given myself a very safe life. And, so, with the knowledge of why I’m freaking out, I can start comforting myself, “you’re safe. you’re loved. It’s over. It’s OK.” All of that healing in the middle of the night when no one else was around to comfort me? It’s proof that I have everything I need within.

People ask me all of the time if Ian has been my primary caregiver. And, I usually say something like, “it has taken a village to get me well, but, in the end, I have been my own primary caregiver.” I am not a victim today. I can choose how to take care of myself, who takes care of me, and furthermore/even more radically I can give my past self all that she’s been looking. ALL of my past selves. Even the needy, over sexualized, annoying and sweetly confused teenager. I’m calling off the search party! Now, I can get get busy collecting memories instead of mother and father figures.

With fun, and love,

Jackie

 

 

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How I Went From Healer-Phobic to Healer-Friendly

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“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.

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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,

Jackie

PS: Please use your discretion when choosing people to work with! OK? My “team”  came highly recommended to me by people I trust.

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The Power of Whispering “Please”

 

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I was in a yoga class last Tuesday afternoon, August 30th, 2016. I had spent an hour “opening up” (insert: eye roll), breathing, and getting in touch with the silence and stillness of my body, feeling so grateful for how far I’ve come on my way to wellness. After savasana, I felt all calm and centered, all like “mmm namaste.” Slowly packing up my mat and water bottle, I swiped my phone out of airplane mode simultaneously driving my energy to erratic and off-center. A message from my cousin immediately popped up that read, “I’m sure you’ve heard the news. Will you be at the funeral?” PANIC. I hadn’t heard the news. I was about to hear the news. My 23-year-old cousin passed away tragically in the earliest hours of Tuesday morning. “Passed away” suggests some sort of peaceful movement into another realm, but, I can assure you, nothing about it felt peaceful. Not to me. For me, it was more of a disorienting impact, like when those cartoon characters see stars after getting hit really hard. I couldn’t breathe. The same room I had just gotten all namaste in, held space for my hysterical tears. I immediately thought of his mother—notably one of my favorite people on this planet— and his brother. My heart aches deeply for them. I made a fierce and confident decision in that moment, on my knees in tears, that no matter what, I would be at the funeral. Yes, I knew it was across the country, I knew my health wasn’t super stable, and I knew that I was super short on cash, but I also knew that I WOULD be there. My (almost) three-year long struggle with Lyme disease has taught me a thing or two or three or four about compassion, about humanity, and about empathy. Well “you” taught me, actually. You know who you are—all of the people who have had my back again and again and again over the last couple of years—you’re the reason I know how necessary it is to show up. After I pulled myself together from the shock of the news—out of the hysterics, floating into more a cloudy daze of confusion—I got in my car and drove home to look up airline tickets. Apparently, I had spoken too soon and too confidently. The cheapest ticket was $930.00, and painfully out of my price range. And yet, I went, and I went fully available to my family. How in the fuck, you ask? Because just when I thought I had been shown my fair share of love in this lifetime, I was proven wrong, love saved the day. . . again. As it turns out, there might not be a shortage on that shit.

I’ve always been way more comfortable in the role of care-taker. I truly believed that I didn’t need— “you” clearly needed love and support and help, but, me? I’d be just fine. I’m tough enough, I can take it, I thought. As a kid, I would watch my brother or mother suffer under my father’s cruelty and wish/pray that I could just trade places with them, thinking that I had some sort of magical armor that they didn’t. I played that role for a good long while— giving, giving, giving until I used up all of my energy, got Lyme disease and had nothing left to give. OK, I had to stop giving, but I certainly wasn’t going to ask for anything. GASP. How could I? I would just take care of myself, like I always had.

I continued working as a waitress (I don’t suggest this) to desperately try to pay bills. I refused almost every offer of accompaniment to the doctor, assuming I would just need a couple of months and lots of antibiotics to get back to my “normal life.” Without my asking, a couple of friends jumped in over this short period— my dear friend ran a $1,500 fundraiser so I could cover some antibiotics, another friend took me to one doctor’s appointment, my mom paid for a months worth of an intramuscular antibiotic, and my boyfriend held me while I cried a few times. I thought, at that point, that I had used up my predetermined supply of love, help, and support one gets in this lifetime; as though, upon entering the world, we are handed an allotted number of chips or tickets, and each time we are loved, we hand one in, making us want to “save them for a rainy day.”

My storm came. I took a nose dive into the unfathomable darkness of Lyme disease and multi systemic chronic illness. If I was going to get well or survive, I was going to NEED help—next-level help. I certainly didn’t know how to ask or what to even ask for. It seemed like I needed too much—like I’d probably die waiting for my needs to be met. Finding myself in fetal position, terrified and disturbed, I whispered out into the universe, “please.” Just. . . please. Looking back, it seems like all I had to do—once I surrendered to reality— was sit back and ACCEPT what people were offering me. Here is just a glimpse into what people have done for me over the last two years:

You fed me : One friend flew across the country just to cook me batches of healthy food. My freezer was full of cauliflower soup, lentil stew, lamb burgers, tzatziki sauce, and carrot ginger dressing. Another friend delivers me groceries or home-made meals during every single IVIG treatment. I’ve been treated to countless lunches, dinners, green juices, and smoothies. I have been sent gift cards to Whole Foods or Gelsons just…randomly. I’ve opened my front door to surprise packages from friends and family chock full of nutritious sustenance—from meat, to protein bars, to nuts and tea. hehe. My boyfriend has spoon-fed me / force-fed me more times than I can count, and my family—oh, my lovely family that knows nothing about the insane diet I’m on worked their asses off last time I saw them to meet my dietary restrictions. THANK YOU.

You tucked me in: I kid you not, I have been rocked to sleep. My back has seen many loving hands, and my forehead has been calmly caressed by countless. I have been sung to, massaged, and even CHANGED into pajamas. YUP. Those were the days…when I’d be so sick I couldn’t take my own pants off. More than one person has changed me into comfortable clothing. More than one person has seen to it that I fell asleep. More than one person offered their bed or couch or arms when I needed comfort. THANK YOU.

You STILL take me to the doctor: In extreme ways and not so extreme ways, I have been taken to the doctor. One woman who suffers her own struggle with Lyme disease, took me to get blood drawn before she ever even met me a couple of years ago. Other friends held my hand for blood draws or took me to the doctor when I simply COULD NOT do it alone anymore. And then there were three special people who did long-term treatments with me. One friend took me to Florida and did a week-long doctor visit with me. He wheeled me around in a wheel chair so I could be a tourist in between doctor appointments and bedtime. Another friend traveled to Indonesia with me for two months, reading me books, singing to me, and cooking for me while all of my blood got removed, restored, and returned. My boyfriend met us during that treatment and has sat through days and day and days of IVIG treatment with me and doctor’s visits and ER visits with me, entertaining me with things like, “Heads up.”  THANK YOU.

You paid my way: We raised over $18,000 to help cure me. I think about 300 people donated to my health. 300 people! Each one of those souls played a part in my recovery. Some people donated 1,000 dollars and other donated 5.00 and every penny cracked me open a little more, showing me just how abundant love is. I needed every cent that came my way, and I still do. A sweet friend of mine just purchased me a very expensive air purifier that I couldn’t afford, my aunt and uncle got me a much-needed new pair of shoes, and my mama buys me supplements. I wouldn’t have had a chance in hell without your help. A certain “you” gifted me a laptop. UH, THANKS. And a certain “you” gifted me crazy expensive supplements, coffee enema supplies, meals, and striaght-up cash. THANK YOU.

You LOVE me: You have listened to me, you have let me cry on your shoulder, you have had endless compassion and kindness for me. You have talked to me for hours, given me advice, loaned me special weird healing things, cried with me, cried for me, sent loving texts, made me laugh, came to visit, taken me for walks, called to check in, skyped with me, and cheered me the fuck on. THANK YOU.

That’s just grazing the surface of the last two years. Here’s what happened in one day:

Last Tuesday, August 30th, 2016, I sat talking to two of my favorite humans about my cousin’s passing, “I don’t know what to do,” I said, “I want to be with my family, but I don’t know how to get there. I can’t afford it. It hurts to be so far away.” And one of those women, a woman who knows too much about death, said, “do you want me to put it on my credit card?” Just as I was saying “no. . . that’s too much..” my other friend casually said, “Why don’t I see if I have miles.” I’m still not super good at accepting help. I STILL think I’ve used up my fair-share so instead of saying, “oh that’d be great, thank you,” I was more like, “well. I mean. If you’d be willing and..” awkward weird space-filling chatter and shifting and nail-biting. While I got weird, she found a flight and booked it. When I said, “you’re an incredible human,” she said, “nah, just a human. You’ll do it for someone else one day.” Two people were willing to get me to my cousin’s funeral. And two other people helped me pack/decide what to wear, AND another person drove me to the airport at 4:30 in the morning the next day. I swear all I did was whisper please.

I landed in South Carolina on Thursday afternoon, walking into the heartbreak. I’m wordless. I just love them so much, and I don’t know what else to say about it.  I watched person after person flood the home of his mother with food, flowers, and hugs. I watched her struggle to accept all of the kindness. I watched people step up and pay for expensive and necessary things because death is not only so heartbreaking for the loved ones, but it is also bank-breaking. Grief is not a weekend deal. It goes on for a long, long time and so should support.

Before I left, I told my his mother, “keep accepting the help. Everyone wants to help you. Let them.” She looked at me and said, “But I’ve already gotten so much help over the last year.” She has been in the throes of her own serious health struggle this year. “There’s no point at which you’ve used up help, support and love. There’s always more,” I said. And I KNOW that to be true because of what “you” have shown me.

For some reason, I still slip back into thinking that I’ve used up my chips. I landed back in LA around 1 am on Sunday night and, get this,  two different friends offered to pick me up from the airport. At 1 am! Just when I thought I’ve had enough, my phone rings, a text comes through, a note comes in the mail, someone donates to my fundraiser, or I get a much needed hug.

I love you, my friends and family. I only hope I can give back an iota of what’s been given to me. Thank you, Lyme disease, for giving me an opportunity to learn about love so that I can show up during this trying time. And *please*, if you read this and know my family, show up for them right now and in the months to come. It takes a freakin village and every single person counts, every single hand, counts. And, I beg of you (I’m not whispering now) if YOU are the person who needs help, ask for it. Ask anyone.Because shame is deadly.

Here is my cousin’s memorial fund.

love upon love upon love,

Jackie

 

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Pulling for Latoya

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

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

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

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

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

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

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

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

With love,

Jackie

PS: find skid row stories on Facebook

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

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

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

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

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

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

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

With Fun, love, and power,

Jackie

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

 

 

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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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What’s Going On?

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It was forty-six years ago that Marvin Gaye was wondering what the fuck was going on. People were coming back (or not coming back) from Vietnam having suffered terribly, drug-use was peaking, and police-brutality was a common response to young activists. But what’s forty-six years? There has been suffering, fighting, hate, and a whole lot of what in the living fuck is going on for centuries; since the beginning of man, there has been war. I’m no expert on history. Ask me when WWI broke out: It’s a guarantee I’ll have the facts wrong. For a good portion of my twenties, it wasn’t just history that I lacked an understanding of: it was current events (which I’m still NO EXPERT on- everyday I have to read more about “Brexit” because it’s so hard for me to understand). As I’ve previously posted about, I didn’t follow the news. People condoned my behavior, “you’re better off, there’s nothing good to read anyway. It’s all so negative and fear-driven.” It still never sat right with me that I wasn’t following what was happening in the world at large- maybe because I have always been surrounded by people- intellectually well-bred New Yorkers – that knew everything. I found myself on the outside, sort of… stumped. Maybe it was that I didn’t want to know, or maybe it was just a maturity thing. But I have a hunch that I had too much personal garbage to sort through and recycle before I could see the impressive mountain of garbage that lied just a foot away from the tip of my nose. Strangely, getting sick, healing from the inside out, gave me space to see beyond just ME. I started following. The “breaking-news” updates were popping up in my email in rapid succession: “this murder, that murder, another murder, dead, dead, death, shoot up, guns, guns, gunman kills x number of people..” I sat down with Jason one night at a cafe in Los Angeles, “I feel so powerless,” I said, “I want to do something, but I guess we can’t really DO anything- do you feel that way?” Jason, wise and calm, said, “Well no actually. I did my research, and I found a foundation for gun-control that I donate to monthly.” Inspiration struck. Imagine that? I can DO something. This post isn’t much of anything: I have no links for you to donate to, and I have no new information for you. All I have here is compassion and all I ask is that, if you read this, you take a second to recognize and fully meet the pain that is out there. I personally CANNOT write another ANYTHING without simply acknowledging what is going on.

I do not want to hide from the news because it’s frightening and “negative.” I feel that I owe victims around the world the respect to acknowledge their suffering. There is a tremendous amount of suffering. Three people were killed in Oregon today, June 27th, two were killed yesterday in different states, and another two the day before in Texas. I had to go searching for that information; they didn’t make the headlines because they’re not famous and because “3” isn’t close to the 41 killed in Turkey, or the 49 that were killed a couple of weeks ago in Orlando. It feels like there’s no time to remember the victims of Paris, San Bernardino, Brussels, UCLA, Oregon, and holy shit ETC. It’s SO MUCH.

Yes, it’s common knowledge that too many people are dying at the hand of guns, AND too many people want to kill- to excess. Too many people are losing family members; children and parents. OK- so we unload that ton of garbage that is currently sitting on the surface, and then there lies the corruption in Washington, crisis in Eastern Europe, the Rohingya people, rape, violence towards women, starving children, hate crimes, racism, the environment, the food industry, the people who are dying because they can’t pay their medical bills, poisoned water, natural disasters,spreading viruses, homelessness, mental illness, and etc. Etc because I don’t know where it ends.

I went to a 3 hour loving-kindness mediation sit yesterday afternoon. I went because all of the proceeds went to Oneorlando. I went because I needed to sit in a space where I could acknowledge what’s going on, meet it, send love, and process my own fear and sadness (which, by the way, is also very real). No, I don’t necessarily think it reverberated out into the world or anything, but it certainly didn’t harm anyone. One of my greatest obstacles in being sick has been the resentment that comes up around people who are dismissive of the illness, the pain. People who are so scared of it, they abandon ship, or ignore me, as though I am contagious. I want to just say to whoever I can, whoever is suffering: I see you. There’s no problem too small or too big, you are seen, your pain is valid, and it is my responsibility to do what I can, when I can. It is my responsibility to give love, compassion, money, or service. THE BEST PART? There’s space for all of it. I can see the darkness and the light. There’s pain, but there is always an abundance of beauty. So, yeah, the news might really suck A WHOLE LOT OF ASS these days, but I’d rather experience this life as one, as a community in the greatest sense of the word. I want to have each others’ backs.

HONESTLY, it’s just nice that I’m finally slightly relieved from the deep obsession with myself. We are all a little relieved about that.

What’s going on is not a new question and the worldwide devastation is nothing new either. But I think about that song, and it did it’s part to spread love and compassion. Maybe it changed someone’s life. Maybe it changed someone’s mind. Ian and I went to see Toots & The Maytals last week, and they dedicated the show to Orlando- it was beautiful and I watched hundreds of people hold space for ALL of the victims. We can all do a little bit of what those musicians do. Whatever is going on- I love you.

With so much love for all of you out there and, of course, holding space for the fun, too,

Jackie

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Just Keep Swimming

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

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

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

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

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

PS: First stop after Iv treatment: FINDING DORY.

WITH FUN AND LOVE,

JACKIE

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I was a prisoner.

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

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

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

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

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

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

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

She ran a host of new blood tests.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Love,

Jackie

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