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.
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?