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“Your vision will become clear only when you look into your heart. Who looks outside, dreams. Who looks inside, awakens.” – C.G. Jung

In my 38 years of life, I’ve had one recurring nightmare. The circumstantial details vary slightly, but there’s always a singular theme: I’m in my childhood home. There is a life-threatening emergency inside the house. I need to get out immediately. But, no matter what I do, I cannot exit. My feet are stuck to the floor like glue, each step a Herculean task. Time moves in reverse. I pack my belongings, but my possessions dematerialize from my bag. I move forward physically, but my body moves backward. I do the same thing over and over (and over) again, accomplishing nothing. I walk downstairs, but I find myself still upstairs. I open a window to jump, and the house ascends 50 stories into the sky. I unbolt a door to run, but there’s a brick wall instead of the hallway.

It’s the emergency – the reason I absolutely “must get out right now” — that differs amongst dreams: a blazing fire, a ticking time bomb, a band of thieves, a ghostly haunting, a murderous intruder, a kidnapper, a tornado, an infestation, a chemical weapon, an alien cyborg, or some surrealist directive only Dalí himself would understand (i.e. if you don’t leave the house in 60 seconds, the structure will transform into a zucchini).

In all these subconscious reveries, I’ve never successfully gotten out of the house. Just as “Dream Alison” is about to die, “Real Alison” hastily awakens, and I find myself alone in bed, my heart racing, immobile from sheer terror, and thoroughly disoriented – Where am I? Where is the threat? And do I need to flee?

The true meaning of this dream is open to interpretation. I’ve read a handful of books and websites on dream analysis over the years, attempting to dissect its psychological origin. But whether we draw from Jungian or Freudian camps, the one connective message is: “house = self” (although I’m sure Freud would have something more specific to say about the zucchini…). So, if the house represents a person’s entire psyche, what exactly does this dream say about me?

Ever the fan of a Gothic narrative and a mentally unhinged author, I’ve revisited Poe’s The Fall of the House of Usher immeasurable times. It’s a disturbing tale … even more disturbing to relate to it… the symbolic structure of a house as character, a self-haunted palace, a hypersensitive protagonist terrified of his own unidentified illness. We greet the story along with the narrator, viewing an almost imperceptible crack in the house’s façade. As we rapidly descend with Roderick Usher into madness, the physical house splits into two. It collapses into the earth as Roderick collapses into his grave. And we escape, alongside the narrator, thankfully free from sharing Roderick’s tragic doom.  When I think of all his inner crises, personal demons, and identity struggles, I have often contemplated — how different am I from Sir Usher? What is this metaphorical terror I personally carry? And how can I awaken before I suffer my own Fall of the House of Alison?

I’ve occupied so many dwelling spaces in the last two decades that the USPS has abandoned my Mail Forward requests (curiously, the West Elm catalog consistently finds me…). I celebrated 27 birthdays in my Pelham Manor childhood domicile. But, I’ve also hung my proverbial hat in two different dorms (and six separate rooms) at the University of Notre Dame; shared a quaint flat in London’s Bayswater district; split astronomical rent with friends in a NYC Midtown East high-rise; signed and renewed my own lease 7 times in two different units of a Hell’s Kitchen crib; broke a lease in a disastrous downtown luxury tower; kicked off my shoes in a Dobbs Ferry condo; and cooked many a Paleo meal in a New Rochelle apartment.  As an EMF Refugee, I was granted shelter in my friend’s 1-bedroom Westchester pad; and offered temporary haven in a neighboring suburban abode.

And yet, with all these shifting postal codes, I have always felt an unnerving disconnect between the physical structure of any “house” and the spiritual center of my “home.” With front door Welcome mats constantly mocking my entrance, I’ve found myself uncomfortably self-conscious and ill-at-ease in my space – any space — be it house or apartment; shared or solitary. How can a person not feel at home in her own home? Returning to dream analysis, I presume this signifies that I have never been “at home” within myself. But is it really that simple?

The first time I left my fountainhead, I ventured off to college in northern Indiana. Trapped amid cornfields and cows, tests and tailgaters, there I was – a stranger in a strange land – this upper Midwest Catholic conservative preppy snow-belt so starkly different from my suburban New York indy alternative upbringing. Blond-haired, blue-eyed Nordic types with their “hard-A” accent on my name enveloped those hallowed collegiate halls – a dramatic contrast to my dark-haired, brown-eyed, Mediterranean-dominant public high school. I felt displaced. Foreign. Anxious. During my four years under the Golden Dome, I could never relax, even in the confines of my own dorm room. There was a nagging sense that I was simultaneously there, but also not there; that I was present, but also absent.

The journey back to New York for mid-semester breaks was an arduous epic of Ulysses proportions. I’d drag my weighty duffle bag 30 minutes cross campus in sub-zero temperatures. Then I’d hop a 2.5 hour crowded bus from South Bend to O’Hare airport, where I’d invariably wind up stranded for 8-24 hours due to hazardous lake-effect snow conditions (aka, a mean-ass blizzard).  This being the late-90’s, I would camp out at my gate, wearing my Seattle grunge best, my Alanis Morissette-styled hair tied up in knots, my battery-powered CD-walkman playing my soundtrack, with a bottle of Coke and M&M’s for dinner. For at least one of those hours, I’d drown out the airport with “The Greatest Hits of Simon & Garfunkel” — and when the disc spun to the track “Homeward Bound,” I would instantaneously morph into a melancholy teenage girl, sobbing alone on the floor of the United terminal, passersby wondering what could possibly be so wrong, but a rare few ever inquiring. The tone, the lyrics — “But all my words come back to me in shades of mediocrity. Like emptiness in harmony, I need someone to comfort me” – they struck something inside me – a lacking, a void, a need for a home that I didn’t ever feel within myself. I was homesick, even when flying home.

In December 2005, my mom sold our house, my childhood nest, and I moved into Manhattan with friends. I was devastated and unsettled. Born and raised there, it was where I made Care Bears come to life. It was where I exchanged letters with Santa and the Tooth Fairy. It was where I learned to sight-read Chopin on a harmonious grand piano. It was where I baked sugary sweet Magnolia cupcakes during snowstorms. It was where my mother hosted elegant and lively dinner parties. It was where I discussed fine art and literature with my brilliantly eccentric neighbor. It was where my posse of co-ed high school friends gathered, often until 3am, intensely debating important life tenets – such as: which is more iconic, Pink Floyd’s “The Wall” or Queen’s “Bohemian Rhapsody.”

But as much as that house represented comfort, safety, family and friends, it also symbolized trauma, tragedy, and pain. It was where my father died of a sudden heart attack one early morning while my mom drove me to middle school. It was where I spent the next 7 years studying furiously to suppress that moment with academic prowess and perfection. It was where the phone rang an unfathomable 16 times to tell me of a string of untimely deaths, all before I graduated high school. It was where I developed a Pavlovian response to the sound of a phone ringing, certain those bells meant someone else had left me. It was where I dressed head-to-toe in black, and baked brownies from a Betty Crocker box, to go sit vigil with my friends. It was where my grandmother rested all day in the basement, coughing, coughing, coughing, playing Nintendo casino games to pass her last few months. She got so mad at me when I threw her cigarettes down the toilet. I got so mad at myself when I slammed the door to mute her coughing. It was where I first got sick, sitting at my computer, college diploma on the wall, typing “neurological paresthesia” into AOL search…panicked, on the marble floor of my upstairs bathroom at 2am, my mother at her wit’s end, “Alison go back to bed, you’ll go to the doctor again tomorrow.”

In short, that house was where I simultaneously felt intense love and morbid fear. No wonder my “dream self” cannot unearth an escape route from this fractured psychological maze of invading terrors.  I’ve been locked inside my own contradictory internal wars – my identity linked to a paradox of comfort and sorrow; abundance and loss; and I’ve been waging an enervating battle within this dichotomy, without any clear direction out.

An introspective gentleman I recently met profoundly noted that in order to heal holistically, I need to fully grieve my past hurts, otherwise I will continue to meet them repetitively in life. Wiser words have never been spoken, and this from an intuitive man who had met me only once. For after decades of therapy, meditation, and healing modalities, I have nonetheless encountered increasingly intricate patterns to my pain. So, how do you really make peace with your troubled past? How do you heal authentically and completely? In essence, how do you break free of your own recurring nightmare?

I relinquished those questions to the powers above, and was led to an answer in a most unusual form. I’ve been wandering in exodus as an EMF Refugee for the last 13 months, without a home or room of my own. Giving up any concept of permanent address and ownership, I’ve relied on the grace of God, the powers of the universe, and the kindness of others to offer me a sanctuary from this digital storm. Having moved through 4 separate crash pads in a mere 12 months, I was about to take residence in a car, for having nowhere else safe to go. And then by divine intervention, the house that wholeheartedly opened its doors to me as shelter, the house from where I am writing this now, just happens to be my childhood residence. There is no possible earthly power that could have led me back here. There is a higher force at work, a fated reason that such energy returned me to my house of origin.

We’ve all seen the saying “Home is where the Heart is” embroidered on many a throw pillow. What a cozy concept. I’ve spent the better part of my life searching outside myself for this elusive “Heart,” in order to claim this prized “Home.” Would I find it through my family? My best friend? My boyfriend? My university? My business? My city? After all, Carrie Bradshaw and her gal pals taught us fabulous single ladies that we can “I Heart NY” our way to everlasting romance.  Problem being, you are not your city, and your city is not you.  So when you leave your beloved Manhattan, and you remove the “I” from “NY”… where then is your “Heart?”

What became astonishingly clear to me in the last year – in the depths of both unprecedented illness and extreme dispossession – is that I need to find my own heart, before I can find my home.  In Sanskrit the word for the Heart Chakra is “Anahata,” meaning “unhurt, unstuck, or unbeaten.” What this really signifies is that beneath all the pain and suffering, lies love and compassion – a peaceful place where no hurt or pain exists. Located at the center of the chest, and situated at the center of the seven chakras, the heart chakra is where the spiritual and the physical are meant to meet. I never needed a Reiki master to tell me my heart center was blocked. I’ve felt it my entire life: a disconnect between the physical and spiritual – obstructing my healing; a nagging constant dull pain, quite literally in the middle of my chest – with no pathological nor physiological reason behind this sensation;  and a fractured sense of self – far too caught up in unresolved grief to ever dare utter the word “love” until most recently.

I’ve been unknowingly leading my life through my head instead of my heart – psychologically repressing childhood traumas, desperately trying to run away from my terrors, only to be met with persistent invasions and barricades at every turn. I’ve been seeking solace in external security blankets that only masked my deteriorating interior walls. I’ve been shutting out haunting memories with a façade of stability, but underneath it all, there’s a heartache that’s never quelled – the pain of absence, the anguish of loss, the trauma of injury. I’ve been so frightfully convinced that my heart was too fragile to beat on its own, that I’ve been looking everywhere and anywhere for a protective armor, but of course I never found one strong enough, as it cannot metaphysically exist.  But what I never before realized, and what I now know to be true, is that I could mend my own distorted broken heart with my own loving open heart.

So, back to my nightmare. I think I finally figured out its enigmatic intention. The answer does not lie in evasion. The trick is not to flee from the house. But rather, the secret is to stop running, face all the terrors inside, unmask the grief within, mourn all the loss, and most importantly, forgive all the pain. There is no person, place, nor object holding a needlepoint pillow platitude that can grant such a joyful and peaceful home. The way out is actually inward…to journey inside…to find the heart… and dwell in its center.

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Wired

“I am fated to journey hand in hand with my strange heroes and to survey the surging immensity of life, to survey it through the laughter that all can see and through the tears unseen and unknown by anyone.” ― Nikolai Gogol

“Not everyone reads comics, although most people know the major superheroes, but the majority of people play video games. “ Jim Lee

My father was born and raised in New Zealand, of Scottish and English descent. My mother was a native of Brooklyn NY, born to a family of loyal Italian heritage. Despite their divergent beginnings, their lives nonetheless intersected in 1960’s Manhattan. They met in a Park Avenue skyscraper. They fell in love. They married. And they had me, their only child.

So when it came time to bestow upon me a name that I would carry around in this world, they thought it only fair to honor both sides of my lineage. They crowned me “Alison” after my paternal grandmother Alice. They baptized me “Mary,” after my maternal grandmother of the same name. They added a second middle name “Fraser,” an homage to the Scottish clan on my father’s side. And naturally, I was granted my father’s patronymic “Main.”

In all this honorific nomenclature, I like to think they simply didn’t have time to doodle hearts + my initials on a 21 Club cocktail napkin. Because if they did, they would have seen that the sequential lettering of “Alison Mary Fraser Main” is “AMFM.” My parents could not have been that enamored of the radio. So, this had to be an inspired message from the divine above –  a sign, a symbol, a signal… of a secret identity, a hidden illness <or power?> I would grow to discover in due time…

Talk to pretty much any teenage boy these days (or the writers for The Big Bang Theory), and you’ll learn that all self-respecting superheroes have a unique origin story, often tragic, involving a freak accident. Peter Parker had his radioactive spider bite. Matt Murdock, his blinding vision disaster. Tony Stark, his shrapnel blast. And me? I had a couch delivered. A gray microfiber loveseat I purchased from a prominent furniture retailer created an intense static electricity vortex in my Gotham City apartment, thereby electrifying everything inside the small unit, including me. This force field was instantaneously strong enough to fry the power port in my new MacBook laptop, and also drain the batteries in my TV remotes. Friends and neighbors who entered my lair were immediately sparked, having dared to touch a metal object or light switch. My handyman who removed said Death Ray Couch suffered repeated electric shocks as he carried it down the hall and into the basement, where it sat for several days, electrocuting anyone who passed within 3 feet of its perimeter. My silken clothes clung to my body. My hair stood on end. And from that fateful moment on, I have been Electro-Hypersensitive (EHS).

The World Health Organization defines EHS as “… a phenomenon where individuals experience adverse health effects while in the vicinity of devices emanating electric, magnetic, or electromagnetic fields.” What does this mean? Well, here are my “EHS 101” Cliff’s Notes: We are surrounded by Radiofrequency Radiation (RF) – WiFi, cell phones, cordless phones, Bluetooth, TV, radio, and smart devices; and Low Frequency Radiation (LF) – electric power systems (wiring), AC electric frields, AC magnetic fields, and dirty electricity. When exposed to these frequencies, a person with EHS will experience biological effects that worsen with duration and dose intensity. Symptoms and severity thereof vary amongst EHS individuals, but the full gamut includes neurological, cardiac, respiratory, dermatological, ophthalmological, urological, gastrointestinal, immunological, and other such manifestations. Severe reactions can include seizures, stroke, and paralysis. Entire textbooks can and should be written on this subject. And a physicist I am not. So I shall leave the intricate science to my esteemed Building Biologist companions, who majestically appear when you send up the bat signal.

“But what does it feel like?” This is the most common question I am asked, when I tell people I am EHS. In a single word: torture. Piercing, stabbing, screaming, pulsating, zapping, searing, scorching, raging, compressing, pressurizing, suffocating, tightening, exploding, all-consuming, unremitting, electrifying, manic, sadistic, begging-for-mercy torture. It feels like my heart is beating to the rhythm of an artificial radiofrequency. It feels like the neurons in my brain are firing along its wavelength. It feels like every single cell coursing through my veins is vibrating to an unnatural energy force. It feels like my entire body is conductive. It feels like I am fused with an electrical circuit. It feels like I am no longer me, but I am a digital pulse transmission instead. It feels like I am being irradiated by an invisible force. It feels like I am being tortured to death. In short, it feels like I am wired.

There are indeed some clever reduction and mitigation efforts to protect oneself from these dangerous fields. This involves shielding, grounding, filtering, and other such tactics – some of which are very helpful, and most of which I use daily. But, there’s no cure-all when even small town living means you’re surrounded by cell towers, WiMAX networks, smart meters, transformers, LED lights, and faulty wiring wherever you go. And if you’re as hypersensitive as I am, then really the best option is to become an “EMF Refugee” – unplug, disconnect, and live in a non-wireless, non-pulsing space – easier said than done in our WiFi and smart tech generation. And sure, I could post on a listserv, gather some equally suffering EHS folks, share a cottage in the remote wilderness, live like Laura Ingalls, read Walden by candlelight, and significantly reduce my RF and LF body burden. But to me, this sounds like a pitch for a new reality tv show – “The Real World: EHS” – This is the true story, of seven strangers, picked to live in a cabin, in the middle of nowhere, and find out what happens, when people stop using technology, and start getting real. (Hey MTV: If you slate this for production, you owe me royalties. Consider this my copyright).

But despite my brief sojourns into an outward bound nature quest, I feel called to remain here in the midst of civilization to protect the public from this modern phantom menace. Because, there are very real, yet unseen dangers lurking in the space between hot spots. Electromagnetic fields have been documented to cause a spiraling list of health conditions, including: leukemia, brain tumors, breast cancer, neurodegenerative diseases, ALS, genotoxic effects (i.e. DNA damage), compromised immune function, miscarriage, heart disease, chronic insomnia, cognition changes (memory & learning, behavior, attention, concentration deficits), and altered brainwave activity. The average citizen cannot physiologically experience these frequencies with their senses, but we’re swimming in them. And the dastardly tricky part is: You can’t see WiFi. You can’t touch cell waves. You can’t smell dirty electricity. You can’t taste Bluetooth. You can’t hear a magnetic field. But, me? I can feel it all. As can others with EHS. And it feels evil. And so, as much as my EHS makes me physically weak, I cannot help but wonder – why doesn’t this extrasensory superhuman ability make me a superhero?

Aside from their spandex outfits and deification at Comic Con…What do most of our fabled caped crusaders have in common? Extraordinary powers and abilities (often of heightened sensory perception), a distinctive back-story, a strong moral code, a motivation to fight for justice and protect the public, an array of enemies, and quite often a tragic past accident or storyline that served as the catalyst for their powers. Short of dressing in primary-colored Lycra, it seems to me that I personally meet all these qualifications.

When you think about our beloved Marvel and DC superheroes – those we’ve entrusted to save our fictionalized worlds – I find that a significant number of them are EHS. Spiderman’s “spidey-sense” is a tingling feeling at the base of his skull, alerting him to danger. This precognitive neurological spinal inflammation gets more intense in proportion to the level of danger present. He can feel vibrations and currents in the air through his web lines, and detect certain radiofrequencies. His EHS is why he appears on the scene at the slightest sign of peril. Daredevil lost his sense of sight in a radioactive accident. This heightened his remaining four senses, granting him a type of “sonar” radar to fight crime and vanquish his enemies. Superman’s powers of flight, super strength, xray vision, speed, heat vision, and other superhuman senses are derived from electromagnetic radiation stored in his cells from his planet’s explosion. What is Kryptonite after all? It’s a radioactive fragment from the planet Krypton. When Superman is exposed to green Kryptonite in particular, it biochemically alters his cellular energy process and weakens his powers. Prolonged exposure can lead to his death. And Iron Man’s character eventually extends his armor with a techno-organic virus injection, allowing him to interface with satellites and wireless frequencies in order to augment his powers.

At least the citizens of Batman’s dark metropolis saw The Joker coming. You can’t miss a homicidal maniac with a sinister clown-face dropping into black tie galas with purple laughing gas, or bombing City Hall with neon-colored acid spray. But, our society has a far more terrifying arch enemy to fight, and its name is Electrosmog. This super villain is a criminal mastermind genius, because he is everywhere, he is invisible, and he masquerades as our digital play toys, our shiny sleek phones, our streaming movies, our “Free WiFi,” our Internet of Things, our Big Data, our green energy, our “apps for that,” our “iEverythings,” our keyless entries, our wearable communications, our nebulous “cloud,” and our addictive “smart” devices we’ve all come to love and crave like a drug. This formidable adversary strategically splits his identity, hiding in headquarters at Verizon, Google, Microsoft, IBM, Apple, AT&T, GE, ConEd, PG&E, and other such industry giants. He’s got the world’s governments and agencies under his spell, as our political leaders deny any clear and present danger. He’s brilliantly waging a psychological warfare, having tapped into our base fears of isolation and solitude, keeping us anesthetized with digital hyper-connectivity. He is the incarnation of Dr. Doom, Lex Luther, Magneto, Two Face, and Kingpin rolled into one. And the global population is allowing itself to be manipulated and destroyed by something they quite literally cannot sense….and by something they can no longer fathom living without. I doubt even the great Stan Lee could have imagined such a ruthless and villainous character in his wildest dreams.

What today’s very real superheroes have been tasked to do is: Stop the expansion and proliferation of wireless technology. End world-wide electromagnetic pollution. Create civilized and thriving safe havens for those disabled and sickened from these damaging frequencies. And expose microwave radiation for what it is – not a cool, hip flashy gadget to envy, but an amoral and hazardous foe, primed to control humanity and poison the earth.

And so. I’ve unmasked my alter ego. I’ve revealed my Kryptonite. I’ve challenged my nemesis. My weakness is also my power. My illness is also my strength. I’ve been wired from birth to sense danger around me. I’m standing with my brave allies. I will not be overpowered.

Proof

The truth is… I don’t know how to write this. How do you sum up your life in a “story?” And what does that word “story” even mean in this context? I keep getting caught up on it. Wise friends and colleagues have told me to “write my story” about my Lyme disease, my life with an elusive chronic illness, my 20-year search for a diagnosis, the overall medical mystery that has been me. Because I have a unique perspective. Because I should add my voice to the fray. Because I have an individual journey that should be shared. And I agree. I do. It’s a “story” that needs to be told, and it’s mine. But, then I get stuck. As if in writing this, the events of my life and disease cease to be real; as if the composition diminishes the experience of it – the heartache, the panic, the trauma. As if words themselves rob meaning and significance from everything I’ve suffered. I question what linguistic trick is powerful enough to convey the essence of an illness…?

When I was a high school senior, my AP Calculus teacher assigned us each to write a 30-page research paper on “The Derivative.” Clearly confusing Pelham Memorial High School with an illustrious Harvard Doctorate Program in Advanced Mathematics, he explained this paper would be the culmination of everything we learned in class (apparently, taking the AP test itself was not sufficient), and therefore would weigh heavily on our final grade. Ever the high-achiever, I would not let this arduous challenge go unfulfilled in greatness. Over the course of several weeks, I toiled through tomes of scribbled notes, scholarly theorems and graduate texts – all to create my very own masterful mini-thesis on a mathematical function whose purpose I never fully comprehended. Taken letter-by-letter, and line-by-line, my analytically deductive words and delicately dancing numbers seemed to lead to a very logical conclusion. However, when viewed collectively as a comprehensive scientific argument, I found myself deliriously adrift in this monstrous, panic-inducing opus of my own creation. Somewhere in the middle of the 30-page proof, I lost my bearings. I could not elegantly demonstrate my thesis statement to be true. Not letting any academic mission get the better of my intellect (and GPA), I persevered, and threw myself into a trance of numbers, equations, and diagrams. I abandoned doubt (and sleep), and tapped into a part of my brain that relinquished control of mere surface knowledge. And within that, I found a precise and formal direction from beginning to end. I proved the intrinsic value of the derivative, and this effort bestowed upon me a gleaming “A” mark. Victory, hurrah!

So, why recount this tale of numerical prowess here? Because in forming a logical structure from a seemingly illogical amalgamation of letters, numbers, signs, symbols, and words – that twisting, turning Calculus proof was the most confounding thing I ever had to write.

Until now.

On constant replay in my mind is a dizzying slideshow of faces, places, names, colors, sensations, words, events, phrases, objects, expressions, seasons, hands, glances, voices, rooms, cities, landscapes, streets, lights, and sounds. It’s a visual carousel of memories that consciously and subconsciously equal my life – spinning on repeat cycle just out of reach – haunting me, taunting me with a real-time succession of visceral reactions – to make sense of it all – to bring it forth – to make it known – to prove its existence as real. But when I try to bring myself into those moments – to give them words – to express what it’s like to “be me,” to “be sick,” to “have Lyme” – the words get distorted, and the images morph into a cloud of jarring colors and discordant sounds. The moment becomes past. The memory cannot be brought present. Its significance loses clarity. My agony loses intensity. And I feel “less” for it.

There’s a 25-page document in my doctor’s “Alison Main” file that recounts (in excruciating detail) a timeline of my symptoms, procedures, emotional traumas, treatments, therapies, and medications. There’s also an overflowing box in my closet containing two-decades of lab tests, MRI’s, scopes, scans, X-Rays, EMG’s, EKG’s, biopsies, infusions, genetic maps, and other torture-chamber techniques. From these chronologies and CSI-esque vessels, I can indeed enumerate my list of progressively worsening symptoms and syndromes with an air of detachment for anyone who so inquires: Peripheral neuropathy (tingling, pins and needles, numbness), muscle twitching and spasms, ataxia, vertigo, brain fog, chronic fatigue, joint pain, headaches, spinal pain, stiff neck, back pain, heart palpitations, arrhythmia, interstitial cystitis, digestive disorders, Celiac disease, skin rashes, tibia-bone pain, heat/pain in the soles of my feet, iron-deficient anemia, B12/folate deficiency, hormonal imbalances, adrenal failure, insomnia, hair thinning, eczema, vulvodynia, eye floaters and flashers, and an inordinate list of light, sound, sun, heat, food, chemical, electromagnetic, and environmental sensitivities. And I can offer anyone an equally impressive list of doctors and specialists where I’ve sought validation and verification, but soon hit concrete walls: Neurologists, Rheumatologists, Dermatologists, Primary Care Physicians, Allergists, Immunologists, Gastroenterologists, Infection Disease Specialists, Orthopedists, Podiatrists, Psychiatrists, Psychologists, Urologists, Gynecologists, Ophthalmologists, Naturopaths, and Nutritionists. And then there are the alternative therapies I’ve wholeheartedly tried, but from which received little-to-no relief: Acupuncture, Yoga, Pilates, Qigong, Reiki, Cranio Sacral Therapy, Energy Healing, NAET, Homeopathy, Physical Therapy, Aromatherapy, and Message Therapy. I even once gave myself over to a Medical Intuitive and a Shaman for an entire Saturday (and was absolutely psyched to learn that I have equally traumatic past lives – as if PTSD from this life weren’t enough).

But, organize those tests, timelines, symptoms, and renowned specialists together in a neat little folder, and that synthesis is not me. That’s not actually my “story.” That’s not my experience with Chronic Lyme. That’s not the internal stuff – the fear, the darkness, the stripping of my identity, the regrets, the neglect, the isolation, the shock, the loneliness. That’s not what I’ve witnessed. And none of it proves the meaning to my existence – that in the midst of all this deductive reasoning and ordered lists… I am here, I am real, and I matter.

So, if I close my eyes, and jump into the carousel, to share those reveries and energies with you, I have to rely on the inferior efficacy of words to accomplish that. But I’ll do my best. Because this is my Lyme:

A midtown skyscraper. First job post-college. A publishing house. Hushed conversations in my cubicle, on the phone with doctors. Do I have MS? Lupus? Lyme? RA? What do you mean you don’t know? How can nothing be wrong with me? No, I’m not going to take Paxil. Go back to work. Design another sales tool. Google “peripheral neuropathy.” Half-breathe. Half-concentrate. Flit about Manhattan on errands. Models and artists buying $25 coffee beans at Dean & Deluca. I camouflage myself in the back, but they furtively glance in my direction. They see a sad, anxious girl on her mobile. Barely able to get the words out – Did the blood test come back yet? What do you mean false positive? No, I do not want Lyrica. Standing amongst the rainbow stacks of sweaters at J. Crew. Hitting “check mail. check mail. check mail” until my iPhone loads my latest lab result PDF. How can I still be alive if my iron saturation is zero? Can you re-test for Lyme? No? Why not? No thank you, I do not want Zoloft. Photos of suspicious skin rashes replace images of birthday parties and weddings in my iPhoto albums. On the Metro North commuter rail – crouched in a corner seat – hoping the Brooks Brothers idols don’t notice I’m frozen in fear, heading to another doctor, shaking to hold in tears. I do not wish to appear the messed-up crazy girl on the 4:47pm train. The past-due invoices from Quest, LabCorp, Shiel, Columbia Presbyterian, NYU-Langone, Cornell Weill, St. Luke’s Roosevelt flooding my mailbox daily. The calls from Visa and Bank of America. Why haven’t you paid us? Well, it’s pay you or pay my doctors. Someone’s gonna lose out. Panicked midnight phone calls to my mom – I feel sick. Help me. Fine, I’ll make another appointment. Cancel another social event. Go to another doctor. Go to Urgent Care. Go to the ER. Make a vow one New Year’s Eve to spend 365 days without a trip to the ER. Fail that resolution. Why does the pharmacist know my name before I say hello? Embark on cross-country road trips to medical clinics instead of vacation hot spots. The nights terrified to go to sleep with severe neurological episodes. What if I don’t wake up? I want to wake up. Page my doctor. Don’t breathe, don’t eat, don’t drink, don’t move until she calls back. I hate bothering her. I don’t want to ask these questions anymore. What’s wrong with me? Is it dangerous? Should I worry? Hysterical tears. Friends say “call your therapist.” So I call. I’m tired. I’m weak. I am such a burden. I can’t do this anymore. I want an end. I can’t go on. Somehow she convinces me to go on. Hurricane Sandy raging outside my Midtown apartment window. Locked inside with a neurological breakdown from the ill-informed doctor who gave me a tetanus shot to set off an unprecedented autoimmune spiral. I’m stuck alone while the city goes dark, and he’s home with his family probably, and no one is ever responsible. Sit in a Union Square bar with friends. Drink herbal tea. They’re all clinking glasses of dirty martinis. Don’t show the envy. Sit in a SoHo restaurant. The friends dine on bruschetta, pasta, and share desserts with carefree abandon. I’m fine with the Larabar I threw in my bag. What a pretty Christmas tree. Seven hours later asthma, can’t breathe, can’t stop coughing. Call the doorman to remove the tree. Immune system can’t handle mold toxins. Wake up with back pain. No, it’s not the normal back pain. No, I can’t just tough it out. Fever, chills, pain getting worse. Doctor says kidney infection. But I didn’t even have a UTI. Second chakra is just screwed. Chest pains, dizzy, heart palpitations. Run to the Cornell ER. Is my hemoglobin count below 8? Why is it taking ten hours to get a CBC? Trapped in the ER overnight. Cold. Harsh. Institutional. Not enough blankets. Begging. Pleading. I want to go home. Please take me home. Sign me out. I don’t belong here. I want my bed. I want my stuffed animals. I want to leave…

There are times I enter a sliding doors version of myself. I try to forget for a night, a day, a weekend that this is my existence. I buy $750 boots from Stuart Weitzman simply because I want something extravagant just for me… Because I want to slide my credit card somewhere other than Walgreens and Whole Foods. I play the fashionable, hipster cool graphic designer chick, and I go to happy hours with media moguls, and I evoke wit and witticisms, ignoring the onslaught of emails pinging from my doctor advocating a repeat brain MRI to check for additional lesions. That can wait. I’m a successful Manhattan creative type. I hop from a cystoscopy at my urologist’s Murray Hill office uptown to Monique Lhuillier –distracting myself from the post-procedure sharp, burning pain, sure I’ll take that glass of champagne, I smile to the woman in pearls, as I meet my best friend for her bridal gown fitting. I play the role of Pippa to her Kate Middleton in her pseudo royal wedding, I dance the tango with a Brit, give a kick ass Maid of Honor speech – all with the room spinning, my joints aching, my ankles swollen, and a pounding headache. I take a high-stress, mega-powered newspaper job. I down venti lattes during the day. I match the ad sales guys shot for shot in the bars after work. I wear out whatever shred of remission that year granted me. I put on a black strapless dress and go to a chic downtown party. I play the “hot girl” that I’m supposed to be – the mid-30’s alluring temptress. The handsome, jetsetter guy tries to seduce me, but I end his game before it starts, politely declining to take the night back to his apartment. It’s not fair to him. I’ll never be the fantasy he projects onto me. My internal reality does not match my external reflection. I’ve become a master at smoke and mirrors. That alternate version of “me” doesn’t last. It’s midnight and my chariot has turned into a pumpkin. And the guy would run if he saw this:

My body weak, collapsed on the floor, clutching my head in agony, screaming for morphine, anything to stop the pain. Tears streaming, gasping for breath, head pulsating, a deep bright red fiery heat all over, a burning searing pain covering my skin, exhaustion, I could sleep right here on the floor if the pain weren’t so stabbing, can’t move my neck, can’t feel my hands, my feet are numb, it hurts to be hugged don’t touch me. My mom in the next room silent – always maddeningly quiet during these episodes – she doesn’t know what to say or do. A lifetime spent trying to help her daughter, fix her daughter, make it all go away, make it all better, but she can’t. So she’s still, and she’s silent, and she cooks and she cleans and she talks about work, all because she can’t make her daughter well again. All because she couldn’t find any answer soon enough. And it’s the only thing she’s ever wanted. And I remember the tick bite. I’m 9 years old, walking out of my bathroom, with just a towel wrapped around my body, my shoulders bare. My mom stops me in the hall, sees me, sees something black just under my right shoulder blade — “WHAT IS THAT ON YOUR BACK?” she shouts, scaring the hell out of me. “What? Is it a bug?” (Yes, it was a bug…). She dutifully runs to the next room, grabs tweezers and antiseptic needles, and performs a mini-surgery on me. I just want it off me, out of me. I don’t care if it scars, just get it out. I don’t know this at the time, but my mom is petrified. She’s read all the articles in the local New York papers about Lyme disease – this emerging illness from Lyme CT – people getting curiously sick from a tiny little tick bite. She’s panicked this will happen to her own daughter. So, she removes every part of the tick, intelligently bags it, rushes us to the hospital, where they don’t seem to care. Not even then. Minimize the problem. 2-weeks antibiotics. One follow-up blood test. Nothing is wrong. Your daughter is fine. No need to worry. One year later, I’m dreadfully ill with mono. Then pneumonia. Then constant strep and viral infections. Then rashes. It started then. I remember it then. I lost something then.

Fast forward over twenty years, and I’m here writing this with a full-blown autoimmune disease, confounding methylation barricades, genetic detox failures, raging chronic Lyme and Bartonella infections, over-toxification, environmental illnesses – all compounded by a constant stream of emotional and psychological traumas from childhood through adulthood. How relieving it was to finally hear a metabolic specialist, in a humble New Jersey office, express this equation: my biochemical breakdown + my Lyme infection + my toxic exposure + my emotional losses = “a total cluster-fuck.” All bringing me to her office, debilitated, exhausted, depleted, hopeless, and betrayed. But finally with a diagnosis. Finally with a convoluted yet scientifically logical direction from A to Z. Finally a truth for my dysfunction.

Orson Welles said “If you want a happy ending, that depends, of course, on where you stop your story.” So, do I stop my “story” here, for now? Have I proved enough?

Q.E.D.

Begin Again

“For last year’s words belong to last year’s language. And next year’s words await another voice.” – T.S. Eliot (Four Quartets)

What I write here today is not a story of my Lyme disease struggle nor account of spiraling autoimmunity (that all deserves its own space and thought). But rather, this is a philosophical reflection at the end of my year – a musing on what is real, what is true, for me and for all of us, when you remove everything that is external. A perspective on what existence means when you let go of loss, when you accept the impermanence of it all, and when you have been thrown out of your life, in order to begin again.

I was born in February 1978, in the midst of a fierce blizzard, in a Bronx NY hospital…to a prominent “Mad Man” father, and a beautiful, loving mother who labored 24-hours to give me life. As the story goes – confounding doctors even then – it appeared that I stubbornly and simply did not want to be born into this world, refusing to comply with standard birthing procedures.    

Ultimately born via emergency c-section, with my mom hospitalized for 10 days thereafter… the subsequent movement through my 37 years of this life has been one of blindingly stark awareness, debilitating inner turmoils, and chronic physical illness – all entwined in mind, body, and spirit. All connected in pain of disconnection, fear of a power higher than myself moving me through this universe, and crippling anxiety that ultimately, this journey begins and ends alone. Petrified that my soul was meant to be tested in this life, unsure how to become the hero, when I positioned myself the tragic heroine instead.

As such – do we give credence and weight to past lives and reincarnation? Do we intrinsically know when it’s safer to stay in the womb? Are we aware of our karmic debt as we enter into a new life? And if we’re energetically hypersensitive, can we feel this within our soul before we even greet the world with a wailing cry?

In memory and narrative, I have defined my life as one of immense and inexplicable loss. Loss of father at the age of 11. Loss of childhood innocence. Loss of classmates (some at their own hands; some at the whim of fate’s). Loss of father figures, maternal figures. Loss of security and illusions thereof. Loss of romantic partners. Loss of friends. Loss of good health and normal function. Loss of foods I loved to eat. Loss of financial comfort. Loss of connection to a digital world. Loss of professional development. Loss of travel. Loss of my Manhattan. Loss of possibilities. Loss of what could have been, would have been, should have been. And loss of home – both literal and conceptual.

I first learned the word “ephemeral” in French – “éphémère.” Sitting in high school French class reading “The Little Prince” in its original language. I thought: what a beautifully tragic word. Éphémère. Ephemeral. Fleeting, transient, or as Saint-Exupéry explains: “It means ‘which is in danger of speedy disappearance.’”  Echoes of this word have followed me in the 20 years since that French class. The melody of it. The tone. The meaning. The saddest word that ever existed. The latent anxiety of everything and anything rapidly disappearing. The pain of a single word encapsulating my life. Yet, I gave such weight to its tragedy, without heeding the lesson from Le Petit Prince’s philosophical treatise. That the pain of separation only comes from the pleasure of meeting someone or the experience you have. That if you accept that some day, the “loved one” or the “object” will disappear, then your journey through presence and absence will not be painful. But it will be one of love, enlightenment and meaning. There is no significance without the ultimate risk of inevitable loss.

Exactly one year ago to this day, I sat in my well-decorated studio apartment in a doorman building on Manhattan’s West 57th Street… stressed to the limit, juggling design deadlines for six clients at once… packing up my possessions for an upcoming move to a fabulously posh and pretentious FiDi luxury building that evoked status and success just by its address… rushing from shop to shop in the twilight hours to purchase glittering gifts for the sparkling friends…. hopping from holiday happy hours in crowded Midtown bars to cozy West Side coffee chats… pissed at Obamacare for kicking my doctors out of my coverage network…. bemoaning my single status while reflecting on the growing list of married friends and colleagues….mourning the loss of a gentleman friend who chose earlier that calendar year to abruptly exit my life… perpetually on edge, nervous, tired, exhausted, and lonely. Always palpably, paradoxically lonely in the middle of everything, surrounded by all of that light, noise, and energy of the metropolis.

Winter must karmically try to protect me from myself, as my apartment move occurred during yet another blizzard – so foreboding that I had to reschedule the move date the night before, as the city shut down its highways and transit systems. But, I relocated to my downtown address nonetheless on an arctic January morning. And I got debilitatingly and dangerously ill within 24 hours of occupying the new space. A wireless technology innate to the building’s energy management system was the catalyst (details of which also deserve their own tale). But the perfect storm of Chronic Lyme + Environmental Illness + this incessant pulsing of the digital frequency landed me in my very own epic journey not so different from Dorothy’s adventure through Oz. What came after was a whirlwind. Spinning. Disorientation. A lawyer’s office. Lease termination. Financial penalties. Sickness. Weakness. New doctors. Deteriorating neurological and vascular conditions. An aggressive and unforgiving relapse of Lyme (from which I have yet to recover). Inexplicable circumstances to anyone in my orbit. No home of my own. No physical nor cognitive ability to work. A resulting syndrome of electromagnetic hypersensitivity that evicted me from my city, my life, and society itself. And a cascade of loss onward from there…

Just for a moment. Imagine you were forced by the unrelenting powers of the universe and your own oppressively dire physical symptoms to:

Stop.

Everything.

Think about what that means. Shut the TV. Take the earbuds out of your ears. Power down your laptop and tablet. Disconnect your WiFi. Disappear from social media. Put your phone on Airplane mode. Disable your iTunes, your cable, your Netflix. Stop the retail therapy. Avoid stores, cafes, bars and restaurants. Pour the bottles of vodka and tequila and wine down the drain. Ditch all the processed, sugary, carb-laden comfort foods. Detach yourself from clothing labels and brand idols. Move out of your beloved city filled with lively comrades, captivating lights and endless distractions. Quit your job. Give away your business to your colleagues. Forget traveling. Don’t step foot on trains and planes. Become a car passenger instead of a driver. Abandon everything you’ve built for yourself. Leave your home. Then leave your mother’s home. Sleep on a couch. Sleep on another couch. Sleep in a car. Put half your possessions in storage and sell the rest. Witness your bank account approaching zero. Bid a quiet farewell to a shocking assortment of friends, family and romantic partners who have every right not to comprehend nor participate in your altered reality.

And then. Dwell there. By yourself. In the silence. In the solitude. In the darkness. And fall. Allow yourself to keep falling. Surrender to how far down you can go. Because, as much as you endure sheer torture and panic, in the thoughtful words of my meditation guide, “This is where you meet yourself.” And you do. And it’s terrifying. To look inward for the first time, instead of outward. To see yourself as yourself, without the reflective mirrors of distraction around us all. And when you find yourself there, alone, unable to breathe or speak, traumatized by a tornado of loss and displacement – wanting someone (a doctor, a healer, a boyfriend, a parent) to save you – then cry until you can quell the tears yourself, and be still with what is left within you. And then, you save yourself instead.

Because what emerges when absolutely everything is relinquished – and what the universe finally grants you – is the space to begin again. But it’s not a time warp. It’s not an opportunity to “return and re-do everything.” You don’t get a tricked-out DeLorian ride transporting you back to your own personal 1955 with Marty McFly. Rather, you move forward – more authentically, with less fear, more open to what is planned for your soul in this life, more capable of experiencing suffering and loss not as punishment but as wisdom. You walk without fear of being noticed. You interact with insight and intuition, instead of calculation and distortion. You forgive yourself and in doing so, forgive your past. You accept that maybe you really did energetically know you were placed here for a karmic quest. You stop petulantly asking “why do I have to be Buddha?” and you learn what you can through it all. You finally get to change your archetype from victim to hero.

And that is how you begin again.

A candid conversation between Fred Flintstone and George Jetson

Two of Hanna-Barbera’s famous leading men sit down for an informal interview to discuss primal vs modern living, utopia vs dystopia, and human relationships in an age of connection and disconnection.

Fred Flintstone: Pleased to make your acquaintance, George!

George Jetson: Awesome to e-meet you, Fred!

Fred: So, we’ve been asked by some pretty talented animators to interview each other.

George: Yep! I’m psyched to see this on my news feed in a few hours…

Fred: Oh, it’ll probably take our stone carver a few months to get this out for distribution.

George: So, Fred. Where to begin this conversation? I think for me, I’m most fascinated by your primal lifestyle, and yet how many modern conveniences you still have at your fingertips. It seems you aren’t lacking any need or want, even though you live completely without our advanced technologies. How does that all work for you?

Fred: It works without a hitch, George. Our concept of “energy supply” is simply different than yours. I guess you could call our lifestyle “pre-industrial,” but we do have our own power and industry – everything is propelled by the strength and movement of animals and humans. We get around easily – our cars are made of stone, wood, and animal skins, and powered by passengers’ feet. We listen to tunes on a bird beak record player. We take showers with the aid of a friendly mastodon. Our city’s traffic grid features monkey lights at key intersections. I even have a new electric razor – compliments of a buzzing honey bee. Wilma takes care of our dishes with an octopus dishwasher, and so on. It’s a fully functioning metropolis.

George: But isn’t this challenging for you –  To rely on animals and other humans to get everything done? Wouldn’t it be easier and faster to use robots and automated machines like we do?

Fred: Not at all. It’s really a matter of going back to the land — using what it provides to us organically, instead of making something synthetic and unnatural. Truly getting in touch with our ancestral roots and immersing ourselves in a culture of sustainability. We use every part of the animal and plant, so there’s no waste. It makes us feel good about our consumption, while keeping our economy strong, our unemployment rate low, and our society thriving.

George: Isn’t it a tremendous amount of physical labor? Just take your job as a bronto-crane operator.

Fred: We enjoy the physicality of it. Keeps us in shape and balanced. Cardio and weight-training is so important to keep the body functioning in harmony — helps to stave off disease, and prevent muscle atrophy. Barefoot running is also essential. It keeps us grounded, literally. Have you tried earthing? It’s vital to have a direct connection with the land every day. Plus, my job allows me an amazing workout built into my day, so I can come home and enjoy a hearty steak dinner without any guilt.

George: Oh, excellent. I’m glad you brought that up. I’d love you to talk about your Paleo diet. Are you doing this just because it’s trendy?

Fred: Being Paleo is most definitively not a trend for me or my family. It’s a lifestyle, a philosophy – a way of living, thinking, and interacting with the body, with the world, and with other people. It’s hard to separate “diet” from “life” for us, but in general yes, we do follow a “Paleo diet.” We eat real food that comes from real plants & animals, that we grow, source, and prepare ourselves. Nothing processed, just all natural, locally-sourced ingredients. There’s no “junk food” or “convenience food”  — that’s not even in our vocabulary because that’s not how the body is meant to process nutrients. We have more energy and feel better for it.

George: No “convenience food!?” That’s impressive. So, I guess that means no processed sugars, chemical additives or artificial colors?

Fred: That’s correct. There’s no fake sweeteners, refined sugars, trans fats, nor modern oils. We eat plenty of high quality meat without any antibiotics or hormones injected. We also nourish ourselves with organ meats and bone marrow to keep our immune system strong. We really take care to minimize chemicals and toxins, particularly in our food supply, but also in our dwelling space and our environment. We live as pure and organic a lifestyle as possible, to support our individual health, and also the health of the planet.

George: Well, it seems like things are really good is Bedrock. Although I’m not sure how your lifestyle would fly here in Orbit City!

Fred: Yeah. I was thinking the same thing. Maybe this is a good point for me to turn the table and delve into YOUR world.

George: Go for it.

Fred: So, George, on the surface, your society appears to be a sort of futuristic utopia. What are some of the benefits of this smart tech era?

George: Interesting question.  So, the upside is that we have a very fast-paced, productive, and entertaining lifestyle due to all our labor-saving technologies — moving sidewalks, smart cars, computerized tools and devices, robotic help at home and in the workplace. It’s definitely a time-saver and ultra convenient. All we need to do is push a couple of buttons, and dinner is on the table, clothes are washed, the car is folded up, the shopping is done, etc.

Fred: But, with all these push-button conveniences, intuitive software, and integrated communication devices, doesn’t something vital get lost in this visionary “tomorrowland?” I can’t help but sense an Orwellian dystopia lurking underneath your illustrious space age promises.  I’m really talking about the “tech-ifcation” of your society.Where’s the authenticity? Where’s the connection in a world where digital screens and data-sharing devices stand between each and every human?

George: It’s something we don’t consciously think about, otherwise we’d all desperately want to relocate to Bedrock. But when you shine such a light on our society, I see what you mean. Most of my waking hours are spent video conferencing, or attempting to operate some sort of computer device that inevitably goes awry. My teenage daughter Judy is practically surgically attached to her video phone …. she lives on that thing! I can’t imagine she’s paying attention to anything happening around her. My young son Elroy is really into computerized gaming and drones — he’s never known a sandbox or a jungle gym. Plus, we live so high up, our feet never touch the earth anymore. Talk about disconnection and a lack of grounding!

Fred: I was going to mention that in particular. Your houses are sky-high, and you’re surrounded by digital signals wherever you go — your home, your work, your restaurants, your stores, your transport systems, your sidewalks — you’ve even got wearable technology now! Aren’t you at least moderately concerned about what this unrelenting barrage of wireless signals and radiation is doing to your body? It’s got to take a toll on your nervous system, hormone regulation, brain development, and cell reproduction.

George: Yes, actually, I am concerned about that. Particularly for my kids who are growing up with glowing screens, 3D printed food, and virtual communities. They’ve never known anything other than that. I wonder how this is affecting our ability to think, analyze, concentrate and process information. We certainly have become a fully automated society. And now as technology becomes a literal extension of who we are, how we move, how we function, etc, we can do more things, faster and better. But at what cost to our bodies, our ecosystem, and our human relationships?

Fred: Well, maybe you should consider incorporating some Bedrockian principles into your Orbit City lifestyle?

George: I was just thinking that.

William Hanna: Hey guys, time to wrap up! We’ve got all the info and content we need for our article.

Joseph Barbera: And I think our viewers get the take-away message now.

Fred: Happy to help, guys! George, it was a pleasure.

George: Likewise, Fred. Ok, I am powering down now.

The Princess & the Pea probably had Lyme Disease.

* * *

“…The water ran down from her hair and clothes; it ran down into the toes of her shoes and out again at her heels.  And yet she said that she was a real princess. 

Well, we’ll soon find that out, thought the old queen.  But she said nothing, went into the bedroom, took all the bedding off the bedstead, and laid a pea on the bottom; then she took twenty mattresses and laid them on the pea, and then twenty elder-down beds on top of the mattresses.

On this the princess had to lie all night.  In the morning she was asked how she had slept.

‘Oh, very badly!’ said she. ‘I have scarcely closed my eyes all night.  Heaven only knows what was in the bed, but I was lying on something hard, so that I am black and blue all over my body.  It’s horrible!’

Now they knew that she was a real princess because she had felt the pea right through the twenty mattresses and the twenty elder-down beds. Continue reading