Growing out of the Ashes

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We left early in the morning for Sequoia National Park last Tuesday.  I woke up excited for an adventure—a new place, lots of rocks, big trees, and people I love to share life with. I showered, put on in-the-car clothes, double-checked my suitcase for hiking boots, warm socks, an iPhone charger, and sunscreen. We had booked the trip a couple of months prior—my uncle and I debated dates and national parks on the Facebook messenger app ( I’ve found it secretly amusing for years that Facebook is our primary form of communication). When he initially asked if I would be able to join him and my Aunt in Sequoia, an intoxicating joy shot through me— an appreciation for a healthy life that I can’t imagine will ever find its way to evaporation.

“I CAN. ”

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I am Lonely; I am Loved

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Throughout illness, I could not simply or efficiently answer the question I was so often presented with: “how are you?” I’m sure the answer seemed like an obvious, “not good.” To  the outside eye— I was undeniably amidst a shipwreck. I was skinny and pale and frail and depressed and being told there was probably no way out.  But “not good” didn’t resonate—it wasn’t true. The experience of being sick  felt (feels/felt/feels) dynamic.  I was learning indispensable lessons. I was developing as a human, deepening as a spirit and as a creative. I was gaining a wealth of knowledge and a sea of love and compassion. How could I be miserable about such a beautiful makeover?  I was very hopeful—always, almost painfully hopeful. I once read that “hope is the opiate for the truly hopeless.” I wondered if that was me. I still wonder if that is me. Maybe it is, but it feels more true to say that it has been light and dark all at once. All of my life, maybe—I have felt the lightness in equal proportion to the darkness. Amongst these monumental inconsistencies was the desperate loneliness I felt while absorbing more love than I even knew existed. A love not only from my fellows but also from myself. But what brings me to this post is not necessarily the reflection of the past (although, I am very much reflecting) but the feeling I have presently: Why after getting so much healthier do I still sometimes feel so completely heartbreakingly alone?

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A Note for my Caretakers

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Dear Caretakers,

I imagine that this will be the first of many letters and many conversations between us. I’m starting here in a seemingly distant and formal way  because I’m not strong enough for the more intimate teary-eyed conversations right now. I’m also unsure of who needs to read this letter, and I want to give each and every one of you an opportunity to know that you are seen. As I ascend to wellness and the fog is slowly clearing, the vast impact my Lyme disease has had is coming into focus. I look around and I see many faces who have fought with me, and I have no idea what your experience has been, how hard it might have been for various reasons— I never asked. I’ve counted 20 of you who were very close to me over the last three years— 20 of you who I consider to be my main caretakers. 20 of you who were present for much of the suffering, many of the needles, too much of the heartbreak and all of the unthinkable need I was experiencing. But that leaves out maybe 200 people— or more— who donated, prayed, tracked my progress on Facebook, or worried about me. This letter is for all of you, whoever needs it: those of you who fought with me on an almost daily basis on the front lines, those of you who stayed back in the trenches gathering much needed supplies, and  those of you who prayed from your bedroom.  You were not my cheerleaders— you were my ARMY. I write every week about my story—my personal struggle with Lyme disease, stored trauma, and chronic illness. Yes, I often touch on how grateful I feel to have had the most compassionate army of people surrounding me, protecting me from all angles, but it’s come to my attention recently that you have been at war, too. This isn’t just my story—you’ve had your own journey watching someone you love suffer and fight for wellness. And no matter what part you played in this particular journey, your feelings— whether past, present, or future— are valid.

I can empathize—I’ve watched all members of my immediate family,  suffer for most of my life, and I’ve remained unable to do much of anything to help. While I have seen physical illness take hold of people, my family mainly suffers from addiction and mental illness—heartbreaking diseases that impact all surrounding loved ones. Addiction is called a “family disease” for a reason—the powerful current ripples out larger and larger often affecting generations of people whether they’re drinking OR NOT.  People suffering from diseases like these tend to be under the delusion that no one else is affected, that no one else could possibly be in the kind of pain they are in. But I can assure you, there’s PLENTY of suffering to go around. And it’s that type of thinking, that you’re not allowed to have feelings because you couldn’t possibly be suffering more, that prolongs the effects and keeps the current going strong. For a long time, I didn’t let myself really experience the hurt and abandonment I felt because I just assumed that my father suffered more than I did. He talked often and loudly about his own fucked up childhood and made it clear that my own was a cake walk compared to his. I have no idea if that’s true. But I watch people tormented by that voice all of the time—it says, “oh, but my father had it so much worse than me. He was abusive BECAUSE he was abused so I should just be grateful for what I got.” Or, “My mother was the one who suffered in her illness, I can’t possibly make that about me.” It seems like a very compassionate and empathetic voice but really its DNA is that of martyrdom and martyrdom is the tidal wave on the horizon preparing to wipe you out. IF that voice is active around my Lyme disease, if you are one of the 20— or one of the few hundred— and you have suffered through my illness let me just say your pain is valid, your fear is valid and whatever you experienced or begin experiencing is 100 percent valid. I’m not delusional—I’m not saying that Facebook friend #427 is wildly affected by my Lyme disease and needs to seek counseling. I’m just saying that whoever you are and however you’ve been affected—I hope that you have given/ are giving yourself an opportunity to feel it.

I can’t imagine  what it must have been like to be with me every single day through such horror, so many breakdowns, and so much illness. I have no idea what it was like for you to listen to me talk about my own impending death on repeat. Or what it was like for you to watch me go from excited about the full life I had in front of me to bed ridden and in tears every single day. I don’t know how it felt to lose your fun, reliable and available friend. I don’t know what it’s like to care for someone at such a young age, to not know if they’re going to get well and to be terrified to lose them. I don’t know what it was like to stick me with needles while I yelled out in pain, or  what it was like to leave my house when I so obviously didn’t want you to leave. Or how painful it might have been to hear me talk about how suicidal I was or how much I hated myself for being sick or how much I just “couldn’t do another single day in my body.” I imagine that, at moments, I may have felt safer in my own body than you felt watching me—I always held some sense of knowing that I was going to be ok (one day), and you might not have had that. Maybe you were scared to leave me alone, maybe you were scared to hang up the phone with me after I expressed so much pain. Maybe you’re scared that I’m going to abandon our friendship or relationship now that I don’t “need” you anymore. Maybe you’re scared that I’ll forget about you. Maybe this experience kicked up some old experience you’ve had with illness and death in the past or maybe it’s scared you…maybe now you know too much about the in’s and out’s of illness, fucked up doctors and how the medical system doesn’t EXACTLY have our back. And maybe you’re fucking mad at me. I don’t know. I know that I’m incredibly grateful for every single moment that you loaned your hearts to me, and I know that your love has altered me forever.

You people have inspired me every single day to be a better human. You have taught me through your own kind hearts and incredible efforts how to show up for the people I love. I am grateful for each and every thing you did for me. For you who held me day in and day out, always believed in me, and made me feel beautiful when my lips were purple and I was under 100 pounds. You who flew around the world with me to care for me while I got Ozone therapy. You who put me up in Florida and wheeled me around Disneyworld so I could have a day of magic in the midst of shit. You who sent me care packages, called, and texted endlessly. You who made me fundraisers and rubbed my body when it hurt. You who changed me into pajamas, who helped me get up stairs and hills, who brightened up my day with smoothies, food, and laughter. YOU are my fucking heroes.

I sincerely hope that you’ve gathered your own support through whatever journey you’re on—your own army—and that, if you haven’t, you begin to get help now if you need it. This is not just a message about my Lyme disease. It’s also a message to say that no one gets left out of life’s obstacles. Pain is pain—it’s relative and credible no matter what. And while I’m not particularly ready to counsel with you on how the past three years have potentially hurt you, I do want you to know that you are in my thoughts. I hope you know that I think of each of you everyday. That I know I couldn’t have gotten well without your endless support and love. I hope you know that I’m not going anywhere, and that now we get to do all of the fun things we’ve been planning for the last three years. I hope you know that every single hug, every text message, every phone call, and every time you held me while I sobbed, screamed and cried took me one step closer to health. And please know that as I heal, I imagine all of us healing together.

With Fun and Love,

Jackie

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Finding your G-Spot: On Gratitude

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

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

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

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

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

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

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

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

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

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

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

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

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

Get writing!

With fun and love,

Jackie

 

 

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