February 27, 2020

My Life With Adversity

Elaine Katz

I am my own narrative, unfinished, exposed and frenzied.
Only I can tell myself the next sentence of my story.

I craft adventures out of walks and dance down Cambridge streets utterly and innocently credulous of Sia’s words: “I am unstoppable.”

I am buoyed by my bounce back, by my spirit’s dogged capacity to resuscitate after ricocheting off the unforgiving walls of existence.

And, yet, I feel defiled by experience, robbed of something I once called joy.
In making meaning, I am forced to literally redesign the dictionary, to redefine happiness, wellness and so much more.

The world resonates with perspective.
Walks can be journeys, moving can be wellness, disease can set the stage for an unexpected, unscripted, yet magnificent life.

My world echoes with the hum of something I call bliss, which I will define and redefine ad infinitum, forever undaunted.

I crafted this autobiographical sketch while braced in a shoulder garment that hugs my right lower rib and shoulder, which dislocate during sleep almost nightly. A neck brace cloaks my cervical spine and offers some semblance of stability my frequent shoulder dislocations demand. My right arm, a helpless child uncertain of how to carry her own weight, tugs at the base of my scalp.

I was not in a car accident. I do not have whiplash. My injuries occur without cause, without glamorous or romantic narratives to put them on a pedestal of understanding. My connective tissue disorder has a will of its own, and I know better than to attempt to interpret or become mired in its warped logic — or lack thereof.

From a young age, my mother sculpted me into a writer, a poet, an ardent observer of my world. My earliest days dawned with her perched on a chair at our kitchen table, her head bowed over sheets of paper upon which she scribbled with ferocity and doggedness as she tried to write sense into life, to find meaning in the midst of her ill patients and her sick daughter. Through her, as through me, words course. Throughout my life, I have felt an unwavering urge to do them justice, to let them breathe. To that end, I thought it was about time that they, the morass of syllables, pay it forward to me and tell my story — so my invisible illness no longer conceals me from the world.

When I was 10 years old, my life took an acute turn down a path riddled with pain, devastation and, eventually, hope. The culpable agent was woven into the seams of my genetic code but did not rear its unforgiving head until the hormonal shower of puberty rippled through me. As a child, my unparalleled flexibility was an asset; my legs spilt into 180 degrees and my shoulders could withstand an endless procession of flips. Some internal switch flipped when, at age 10, I awaited a tennis ball, poised to respond with my unruly forehand. That memorialized snapshot on the tennis court seemed to be a carbon copy of previous others yet was, in fact, the prodrome of what would be.

The torque in my body did not sit right with my lower spine, which fractured out of alignment. In retrospect, that injury was the initial warning sign of my fragility, a motif that reiterated itself a year later as my family and I charted the uneven streets of Rome and my spine again gave way as I ambled toward the Colosseum. The ancient ruins echoed within as I, unbeknownst to myself at the time, began mourning a loss whose weight would only accumulate in years to come.

Surgeons fused my spine during the time when I should have been in ninth grade, with rods and screws that secured my vertebra for a year, then suddenly abdicated their role. I came undone until a second fusion a year later conferred the stability my spine so desperately needed.

My recollections of adolescence do not match those I might have imagined, expected and longed for myself. Nor do any of my memories, to be honest. My narrative is laced with the harsh and exacting rope of illness, distrust and incredulity. I mold my life despite the toll my circumstances take on dreams that die many deaths within me and persist as internal smoke, ashes in my soul. I live an existence I would not have chosen for myself, and memories suffused with past pain simmer within me. Nonetheless, I live and endeavor with every fiber of my being to etch a life — however imperfect and undesired — out of the brokenness that emerges from living with a chronic and as of yet, incurable disease.

I see myself during the climax of early and middle adolescence, prone and broken on my parents’ king-size bed as hours seemed to pass without me, leaving me behind like something worn and outmoded. Schoolchildren raced down Park Avenue streets with a carelessness and innocence I felt was sliding all too hastily from my own grasp. Alone, day after day, year after year, because of broken bones and torn tendons, I felt like I was fading into a vestige of myself, a worn-out T-shirt that succumbed to far too many cycles of laundry. 

I mustered all my energy to maintain my mind, if not my body. My world became fringed with the comprehensible, the rational, rather than the paranormal landscape of the ill. I exchanged letters for numbers and Charles Dickens for Stephen Hawking. I swallowed “A Brief History of Time” and Feynman’s “Lost Lectures” with a hunger I did not know was brewing within. I began to exercise a muscle I never knew I had, something I now refer to as “resilience” or “grit,” and watched part of me emerge from illness. I did not just watch myself, my childhood and the remnants of my innocence die in my parents’ bedroom as I recovered from back fractures and surgeries, I also gave birth to who I am now — someone who accepts she cannot overcome illness but can learn to live gracefully in its midst.

What began with my spine, the body’s pillar of stability and bidirectional feedback, coursed through my limbs rather subtlety — at least initially — then became me, defining my being. Back surgery gave way to nerve damage in my left leg, which led to Complex Regional Pain Syndrome in my left lower extremity. The world felt like a furnace because my nervous system was on high alert, mistaking a soothing touch for a blowtorch. At age 17, I could not walk, stand, sit or lie down. The pain was electric, and my leg acquired a mind of its own, morphing into some abstract and insane work of art that gushed with hues of purple and red. I was hospitalized for months at a rehabilitation center, where I gradually transitioned in my dependency from wheelchair to walker, from two crutches to a single crutch and, finally, to my legs with the aid of anti-gravity machines and mirror therapy.

I struggled to locate myself, the dreams I had for myself, any sense of my present or my future in the context of other teenagers with terminal cancers, cerebral palsy or brain injuries. I lost faith in God and my world, and could not see any light or any gratifying end to my story. Another day, another month, another year were stealthy stolen from me without recompense. My world went pitch black, and I lost whatever vestige of myself I thought I still possessed. Words, my life media, slipped away and I went mute, refusing to speak even to my parents, to connect to a world I felt had relentlessly rejected me. My touchstones became SET and chess, realms in which rules reigned and logic never faltered. I developed an eating disorder and intentionally hammered my crutch into my left leg until it oozed with blood, perhaps longing to punish my leg, or myself, for leading me astray. Learning how to walk again was the most challenging undertaking.

The interludes that intervened throughout my teenage years in which health (at least in relative terms) seemed to dominate were not quite pauses but punctuation marks, periods during which dire challenges demanded my attention, but did not occupy a year or more of my life. Ovarian tumors, dislocated kneecaps and shoulders, torn nerves and pain seemed to call my name from some black hole in the universe.

“From a young age, my mother sculpted me into a writer, a poet, an ardent observer of my world.”

Again and again, I collided, body and spirit, into the invisible walls of illness. I teetered between wellness and illness, and the most micro of movements sent me in an unfortunate direction. My mother, who has become yoked to me throughout our shared journey of my illness, and I have spent countless hours, days and months pacing corridors and reading novels aloud at the Mayo Clinic, Mount Sinai, Hospital for Special Surgery, and Children’s Specialized Hospital. The ups and downs that span sinusoidally through my life have, for the most part, occurred in hospital walls with my mother’s hand securely entangled in my own.

After my first year at Harvard College, I experienced a series of hip and knee dislocations that left me bedridden yet again, and immobile. A meeting with a geneticist seemed to connect the islands of hardship I carried with me. Now I know my diagnosis of Ehlers-Danlos syndrome (EDS), a rare heritable connective tissue disorder that lacks a cure, is a life sentence.

The collagen protein that fortifies joint capsules, the glue of the body, is malformed in me, essentially making me a collage of functioning parts that fail to function in concert. If you see me dancing down Harvard Yard, you may gloss over the reality that my life diverges from that of the average college student in far too many ways. I often am mistaken for a track runner or an all-star athlete, as I secure my lax joints with kinesiology tape and am always draped in serendipitously fashionable Lululemon apparel that fastens my joints into alignment. My hips dislocate if I sit on solid surfaces; my gastrointestinal tract just barely functions; my shoulder will fall limp if I reach forward or put on a shirt; and my kneecaps emerge latterly if they are not properly swathed in kinesiology tape or if I accidentally cross my legs while sitting. I am unique in that I stand after taking a three-hour exam to find both kneecaps dislocated, with my numb legs locked at awkward angles. Those are just a few snapshots illustrating my personal and daily challenges to which the outside world, excluding my dear friends, is blind. 

As a senior at Harvard studying biology, I resumed my grasp on my life. I began to question and reason through how and to what extent it is possible to dream, to reach into the unknown future despite having a disease that seems to color all my tenses and dispel my sense of control. I have learned to sit with discomfort, to mourn the losses and longings my body will never be able to deliver. My world is so circumscribed by disease that I often struggle to dissociate myself from the thick of it, to figure out who I am outside the context of my faulty connective tissue.

But perhaps I need not fret over where I end and my disease begins. I am a tangle of experiences, just like everyone else, and my task is to embrace the compilation that is me and to live with the internal fractures as I muster the courage to dream and engage with a world that often feels too “normal,” too geared toward the able-bodied.

My disease may have informed my past and will shape my present and future, but I will never succumb to it. Although it molds my contours, I know I, alone, can determine who I am, despite my body. I am an avid learner, a passionate budding scientist entrepreneur aiming to develop stem-cell therapeutics for connective-tissue diseases. I am someone who adores writing above almost all else, and the sound of keys prancing to keep pace with my thoughts. I will never know what might have been the “well” version of myself, but I am at peace with the woman I am becoming.

My interactions with the world may seem sparse, but they sustain me. Because collagen lines the gastrointestinal tract, I suffer from abdominal distention, dysmotility and diastasis recti in addition to mast cell activation syndrome — all of which prevent me from dining out and digesting many foods. I do not participate in nor have ever set foot in a final’s club or taken a drink or drug of any variety. My brain is the one part of me I can calibrate and control, and I intend to hold steadfast to the reins of my body to the greatest extent possible.

 “My brain is the one part of me I can calibrate and control, and I intend to hold steadfast to the reins of my body to the greatest extent possible.”

I prefer quiet rooms and solitude or the company of a friend or two. My social time is confined to parts of the day when I am not relocating my joints or allaying my pain by lying with six ice packs arrayed to cover my backside. The restrictions on my social time transform it a valuable commodity I use with caution. I choose my peers like people in the supermarket select their avocados, scanning each one until they stumble upon the fruit with just the right amount of give. Laughter rains through most of my conversations, in part because much of what I face demands some emotional impulsivity, and laughing is far more preferable and enjoyable than crying.

My walks with my closest friend, Olivia, are metaphors for my life; we migrate for the sake of moving, without destination. We wander until our feet ache and perch ourselves in Cambridge nature reserves until all pressing issues have come under our shared scrutiny. Olivia gazes downward with me at the earth, as she knows I am focused on my feet and the angle my knees make as they stride forward to ensure my security. With her, I am never alone.

My desire to pursue academics at Harvard on my own terms, unbound by my physical limitations, motivates me to contemplate my disease in unconventional terms and craft a blueprint for my body that modern medicine fails to offer. While deeply involved in my undergraduate coursework, I apply the scientific method —  rather strictly — and conduct my own research on dietary modifications, nutritional supplements and exercise regimens that may enable me to optimize my physical and mental engagement in my world. I absorb the knowledge of functional and Eastern medicine practitioners, nutritionists, connective-tissue and stem-cell researchers and biohackers; I translate these experts’ holistic understandings of disease onto the landscape of my life. I am my own experiment and maintain regular records of my nutritional and exercise regimens, which I refine and recalibrate on a daily basis to devise a steadier foundation on which I can continue to grow stronger, minimize joint instability and optimize my participation in every realm of undergraduate life at Harvard.

My body continues to and forever will be a work in progress to which I devote significant time and energy. My mother, without hesitation, remains steadfast by my side; we share my pain and own my disease with as much grit as we can muster. I am forever indebted to her for her faith in me, for accepting me and my reality for what it is. My disease may be invisible to the world, but she sees through the veneer of normal into me, and that vision makes all the difference.

At the close of my first week as a senior at Harvard, my head began to feel like a bowling ball, my vision blurred and an internal ringing noise ensued. My thoughts felt like they were crawling along my axons at the pace of mangled ants. I contemplated the possibility I was dying. As it turned out, I was suffering from a spontaneous cerebrospinal fluid leak, a potential manifestation of EDS. I was forced, again, to take a furlough from my Harvard life and seek medical attention from my team of experts in New York City. While I recovered, I wrote a memoir, which presented me with an opportunity to confront my past head-on and wrest back the control of my narrative from EDS. No one in her right mind would opt to live my life or sign up for the daily series of dislocations that punctuate my existence.

My memoir will resonate with patients contending with chronic illness; with individuals who have frequented one of the many academic or medical institutions mentioned in my book; and, more broadly, with people coming to terms with personal loss, be it physical, psychological or philosophical. My memoir offers a window into the human condition and explores the immeasurable power of grit, love, laughter, silence and writing itself to create an extraordinary life, even in the backdrop of illness. My story will shed light on my “zebra” condition and provide a voice through which the world can begin to understand what it means to live with my disease, which often is invisible, overlooked and misunderstood.

Like “When Breath Becomes Air” by Paul Kalanithi, I want my story to motivate others to recognize the small and often overlooked gifts in life, such as waking up with two legs in their respective sockets. The upside of my EDS is that I do not have the luxury of taking anything for granted. Unlike Kalanithi, however, I am going to outlive my story. My memoir will encourage others to recognize what they already have­­­­­­­ within and around them: the capacity to place one foot in front of another, a brother’s laughter, a mother’s embrace, the feel of a best friend’s hand against your own, your connective tissue (which may or may not connect), and the bottomless quantity of resolve stockpiled in the human spirit.

Elaine Katz is a senior at Harvard studying biology and math who refines the art and science of living with adversity on a daily basis. She says living with Ehlers-Danlos syndrome, a connective tissue disease, has endowed her with far more than it has taken away.