The Curse of Knowing how Healthy Feels

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

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Bill Nye Saves the World?

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

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On Mucus, Urine, and Peace

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Mucus:

I’m home sick—”normal” sick. I have plump yellow and green stuff building up, breaking up, and making its way out. The “normal- sick” sensation remains one to rejoice over. I didn’t experience this for a couple of years—something about Lyme making it impossible for my immune system to work enough to fight common infection—I don’t get it. But what I DO get is that yellow stuff equals normal infection and that’s the kinda thing I’m after. So, hooray, right? Well, not quite.

A couple of weeks ago, I received an emergency phone call from my immunologist. I’m on Medi-cal. For the most part, Medi-cal doctors do not emergency- phone- call me—I’m lucky if they know who I am, can find my files, or call me back after I leave a 911 message. It’s been one of the most frustrating things about being sick: bad doctors, poor treatment. But as the most unpleasant of pleasant surprises, a couple of weeks ago, I got two emergency phone calls, one after the other, “Jacqueline, we need you to come in first thing in the morning to review your recent blood work and get the process started for the IVIG.It’s very important we get going.” I know what my numbers are (I’ve been following them closely and consistently telling the doctor that I need to get started on the IVIG) but still the phone call scared me. It must be bad if the doctor is going out of his way to call, I thought. 

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

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

Clean Eating: My “Controversial” Diet

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

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I Don’t Want to Lock up my Feelings

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When I was home for the holidays, a basket full of papers and old chachkies was handed to me. I was meant to sort through it and throw stuff out. It was like a grab-bag of old family memories—things that brought a smile to my face, others that made me grimace. I pulled out a purple book, decorated with Esmerelda from the Hunchback of Notre Dame. I immediately recognized it as the first journal I ever kept—I was 11. An age that I was unafraid of my passions, an age that offered a soft FULL heart and a spirt that, as an adult, I can’t quite find. As I read some of the brilliantly sweet things I wrote, I felt sad that I ended up taking such a violent detour, I felt inspired by my young self, and I laughed…hard.

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How I Step Into the New Year

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It was hours before midnight, and I was already wasted. Running around in shredded jeans that put my hip bones on display, a tight red, spaghetti- strap shirt that revealed the push- up- bra- boobs of a teenager, and a pair of red sunglasses just to complete the “Fear and Loathing in Las Vegas” look, I was not making mom and dad proud. The New Years Eve party I attended was at my own house—my parents’ friends, my friends, and my brother’s friends shared the space in one excitable gathering. We had been throwing these parties for years, but that would be our last one—the last time we could pretend to be somewhat functional. Although, I’m not sure we had anyone fooled.  My father was only half present that year, leaving the room every so often to take a hit— an omen for what was to come. The clock was running out on 2003, and I had no resolutions for 2004. I was 15 and lost. All of the vitality I had lived with most of my life was just gone, eaten up by poison. I wanted out, I sought escape every chance I got. Around ten PM, with a red Dixie cup in hand, I sloppily took a stand atop our coffee table. Inspired by the music of The Spice Girls (I had picked out the song), I made a loud, screechy toast, “You know,” I shouted, “people never keep their resolutions… so THIS YEAR, I’m going to make a resolution to drink and be fucked up as much as possible because THAT’S a resolution I know I’ll keep.” Laughing so hard, feeling so clever, I stumbled off the table, found my way to the bathroom and spent the remainder of the night puking my guts up. I missed midnight. Technically, I was off to a good start considering my resolution, right?

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Treating Anxiety, Part III: Lyme disease

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

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Treating Anxiety, Part II

Part I here. 

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My hips led me around a Montauk boutique. My jean skirt was too short, my acrylic nails too long, and my shirt too tight. I drank too much, smoked too many cigarettes and cursed more than a “young lady should.” I was too wild, too antsy, too dishonest, too sexy. I was monitoring my movement around the store, looking for mirrors so I could watch myself sway by. Deeply immersed in the passion of self-obsession, I could hear my mother’s muted voice trying to pull me out of my too-cool-for-you attitude, “Jack, jack, this is cute, isn’t it?” She held up a beige shirt,  “Ugh, no mom,” immediately dismissing her excitement, “I don’t like it.” “Well, it’s not for you, it’s for me,” she said annoyed. “Oh. Well then sure.”  I was 15. My mother and I were vacationing in Montauk and we were killing time shopping. At the register,  I spotted a brown leather bracelet. I picked it up to see what was inscribed in it and read, “feel the fear and do it anyway,” written in italic script.  I was cosmically drawn to the saying. It made me feel like the badass I was determined to be. My life had been so overtaken by mood altering substances and experiences that I was numb to my childhood, numb to my passions, numb to love. SO, when I saw that bracelet, I thought, “yeah, feel the fear of overdosing and take all of the drugs anyway, yeah feel like you’re going to die from the insane adventure and do it anyway, be afraid of drunk driving and do it anyway, feel the fear of mixing all of the booze, of fucking the wrong guy, and DO IT ANYWAY.” It was with that M.O that I begged my mother to buy me the bracelet. Because she was in denial of my M.O, she agreed. I wore it everyday,  I followed its direction, and it got me into trouble. That is, until I learned how to use that saying to my life’s benefit.

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