Soar

My patient journey

The waitstaff competed to carry the heaviest trays of dishes and discarded food from the wedding tent to the clubhouse kitchen. Weaving my way through the swaying guests, I scored points in our little game for the fewest lobster tails dropped on the dance floor: just one all summer. Bragging rights translated into mutual respect that created raucous summer nights shared among a hard working team. The heat of summer 2012 made us feel invincible and the grand lawn of the golf course stretched the mind of our collective crew into a regal, earthy feeling of having proximity to success and power. We enjoyed favoritism with our seacoast town’s elite, but as July baked her way into longer tournaments, needier brides and more handsome international groomsmen, pulsating migraines wove soreness deeper into my fibers. 

The pulses echoed from the right side of my head, where I’d first been hit, to the left side of my head, back and forth like a metronome tracking my heartbeat. They slithered down to the base of my skull all the way to my heels and looped up into my face whispering fear of failure across my temples. Thinking of the careful titration of uppers and downers I would need to have a successful junior year as a pre-med student, I hoisted tray after tray, smiled smile after smile, and continued popping Adderall, Excedrin Migraine, and two forms of prescribed sleeping pills to make it through the week of twelve hour shifts.

The caffeine, sugar, adrenaline and competition that built our societal striving became a cocktail as Dark & Stormy as the club’s favorite drink - but as hard as I worked, the pain pushed back harder. 

Gone were the days when I could soar across the lawn on deer thin legs, dancing across newly laid rubber turf with a lacrosse stick held high in the air. In those days the bragging rights came from dropping nothing, cradling the ball in tiny rapid swings of my shoulder, before flinging it from my favorite position of right wing, across my body, and deep into the net to my left. And every time my heart would sing with the scoreboard screen. Always on offense, sports trained me for speed, agility, and finesse until one day the ball came flying into my temple. My defender’s hip whipped my neck to the side, and I stumbled out of sync. The trainer shone a penlight in my eyes, and the whole field went black with little specks of blue. I faked it as best as I could, lied through my teeth because securing a starting position on the 2010 team was the only thing that mattered to 17 year old me. 

Over the years, resilience taught me that falling off a horse meant learning to get back into the saddle. Our mare could smell our fear so breath control and action reined us both in to start again. If my legs could still grip and my seat could still hover between intention and trust, my body could learn to soar millimeters above her back once again.

I’d felt the thrill of racing my sister in the moguls, catching air off the last mound and soaring to my dad’s joyful praise. I’d traded cold toes in ski boots for shin splints every spring. Cleats and sweaty gear collected more rewards for facing risks and enduring moments of pain both on and off the turf field. It was odd that two years of daily persistence through headache pain did not result in a return to play. It cut me from my entire senior year season, removed sports from my college prospects and then seared through a simple catering job like the grill marks on a lobster roll.

Even more ironic, it dumped me back in Boston’s Medical Mecca where I’d once proudly interned with a sports medicine researcher, longing to give athletes thier strength back. By 2012 it had all changed. I wove my way through the flow of white coats void of an X-ray to hold up and say “this is where I’m broken”. No crutches or cast alerted others to where I was vulnerable. The car horns and bus beeps punctuated the pulsing behind my eyes and peppered the din of multilingual chatter as patients from around the world joined us in what looked like the United Nations of healthcare. We came for the world’s finest doctors and most advanced technology. We longed for promises and healing and saw hope in the stream of highly educated professionals. The black lines on the patient intake form swam before my eyes and its directed questions tempted despair into my chronically optimistic mind . “On a scale of 1 to 10 with 10 being the worst, how bad is your pain today?”. How could I put a number to it when physical pain was the easiest part? If this throbbing had been in my ankle like that time I wore a bright pink cast after a poorly planted basketball pivot, we would still be out enjoying life. The measurement I cared for was how this particular pain ordered my every day, how it subverted my capacity for learning, numbered my human connections and shunted the richness.

6/10 for the pain I was skilled at ignoring. I could always rally. 10/10 for the impact on who I was becoming.

When the concussion specialist finally walked in, I leapt to my feet. Loud, crass and confident, his big rosy mitten of a hand jostled my arm and punctuated my vertigo. As he turned on his heel, his perfectly pressed white coat followed him like a cape of hope and I believed the gods of Children’s Hospital would heal me. The crinkly paper on his exam room table turned my pain into an 8/10 and his jabs at my body settled the throbbing deeper into my tiny frame. I held the image of his effortless white coat and believed that I would wear one, some day. But this was back in 2010 when it all first happened and healing seemed possible. 

Two years into college I clung to a Scripture verse about perseverance, let the elders of my local church pray over me, took every medicine the confident doctor prescribed, and I lived for the dream that this brain injury would one day become a distant memory. There was no imaging machine to measure or explain why healing hadn’t taken place in two years, every blood test except the ones that were out-of-network indicated I was free of the fearsome Lyme disease, so I accepted it as a mind over matter situation and ran faster.

___

And faster, and with heavy legs, I positioned myself under the biggest tray piled high with dishes and locked eyes with my team across the dance floor. They smirked and jockeyed for their own loads; Daniel stepped forward to offer help with mine but I shrugged him off, “I can do it”, I tried to believe. Perfect form was my secret to these lifts so I was under control until the weight fell through my layer of perseverance and landed in my weakness. Half into Daniel’s arms, half into the club’s mahogany front desk, I guided the tray of dishes down as I collapsed to the floor. My arms seared from the inside as if they were boiling in their own jacuzzi. My heartbeat was slow, and my vision blurred but my mind was still sharp. “Thank God no one else saw that…”. I crawled behind the desk and gripped the thick carpet with my fingers to slow the spin. My heart matched the beat of the music. They brought me water and one of those fancy bon-bon desserts, but I was far past a sugar revival. They called my parents and my secret was out. Something was still wrong, we just still didn’t have a name for it. The pain was insurmountable now that my strength was paying attention and the monster claimed another victory. I lay in bed for days. The silence was deafening. I hated the stillness.

I dropped out of college and went back to Children’s Hospital. The paper on the table crinkled like Pop Rocks inside my head. The doctor knew I was in a pre-med program and tried to cheer me up with slightly more medical terminology and the idea of new medicines. He scanned the computer and mumbled something about increasing Adderall again. I summoned all my strength, looked him in the eye and asked if he had anything that would heal me. He resumed his pediatric approach, looked at my mother in exasperation, and opened his hand. Index finger, Neuropsych evaluation. Middle finger, another MRI of the brain. Ring finger which he wiggled and made a face before saying, “talk therapy”. And finally, “see a Rheumatologist” as he painstakingly bent his own little finger back until his palm turned white. “Then call me”, and he disappeared to document my to-do list on the computer. 

I trusted the doctor’s prescription of medicines and tests, so we pursued every single option. I was high on the hope that gleamed from his crisp white cape and longed to have the apparent authority over disease that he seemed to possess. The tests made no discoveries and the medicines created their own side effects. I heard the refrain “you should be getting better soon” countless times, so I learned to accept and manage the symptoms once again. We hung dark blankets over my windows, bought earplugs, and my parents took turns helping me eat. Each dead-end diagnosis of Lyme, a virus, a persistent concussion, a series of quiet seizures, psychological pain manifesting as a somatic experience slowly eroded my faith in western medicine as the prescription bottles piled up.

I felt like the local ship wreck that had recently been uncovered by the tide. The schooner built in my hometown was named Ada K. Damon. She was 110 years old by the time I saw her ribs and beams splayed open, exposed by another massive nor-easter off our shoreline. Her mast had broken off in what was known as the Great Christmas Snowstorm of 1909, just after she had been purchased by a merchant who sold all of his land in Maine to invest in her. The pivot cost him his entire savings. The storm that pushed her 84-feet of new business potential into the sandbar seemed to have the same power as the storm that I was physically facing. Hope eroded with every cold gust of wind. Here on the beaches of what had been native land, became merchant territory, and was now one of my family’s favorite playgrounds, I feared that the shipwrecked ribs coated in jagged barnacles might be a warning, a shot across the nascent bow of my hopes - not to launch new ventures or sail very far - just to heal. Sensory deprivation was the only thing that calmed the pulsating migraines but in that stillness my imagination of the future ran wild to escape the questions of my present state. 

Screens, sounds, intense smells, and basic touch were carefully smudged from my daily life.  I lay on my back and found distraction in my mind. I soared through memories and crafted intricate dreams, but dark images of other people in pain dominated my mind as I wrestled with my situation. I had a pretty magical childhood and I didn’t know much about suffering, so I relied on what I had read about other people and tribes of long ago, believing if they had survived, I could too. Stories of ancient people rebuilding their city walls after invasion had been the subject of sermons from the square-edged wooden pulpit of our little New England church since I was little. I pictured myself as Esther descending palace steps toward her captor Babylonian king; I imagined the plight of the unnamed Moabite women robbed of her homelands; I identified with the woman who couldn’t stop bleeding who grabbed hold of Jesus' robe and was healed. I wanted to be healed like them. The season turned from winter to spring and the stream across our street swelled with alewife returning from the ocean to spawn in the lake. I wondered why nobody told stories of indigenous people fishing them and as the world outside came to life, I wondered how the nations who first lived on my parent’s land would have cared for a family member who needed to heal. Though I couldn’t walk far, my mind traced the trails that wove through the sandy dunes to cranberry bogs and I wished to have a simple life like the first nations who knew the forest and marsh lands as friends.

Stories passed down from my Armenian great-grandfather’s escape from what is now modern day Turkey haunted my dreams as I lived in the liminal space between sleep and awareness. My circumstances resonated with their plight more than the parties of my high school friends. The pressure in my head and body decreased ever so slightly when the sensory input was shut off, so I found comfort in my thoughts about the ancients. I wondered what it must have felt like for them to lose their homeland and how someone back then would have survived a concussion - and what was medicinal about a sweat lodge? Access to modern technology gave us a strange permission slip to peer into the halls of my brain and dose it with chemicals that let me forget the pounding pain for a few hours but I was far from catching alewife in the stream. I’d never tasted medicinal herbs, but the child-locked orange bottles started to look hopeless to me, and I wondered if medical science had given us more control than true healing.

My sister tried to help me up the stairs as gently as she could, but her touch burned my back. I yelped as if she’d grabbed my arm and twisted it, her eyes brimmed with tears. Empathy stared into my eyes and asked how she could help. I explained she couldn’t touch, but she could make sure I didn’t fall back down the steps. Grateful for a job, my little sister became a caregiver, though I was far from the promises I prayed to see: to hope in the Lord and have renewed strength, to soar on wings like eagles and to run and not grow weary, to walk and not faint. I clung to those images even as I feared my life would become a waste of oxygen. 

___

Medically speaking, we had reached the last, little, pinky finger-sized option. There was nothing to be found in neuropsychological evaluations except a profound understanding that the brain is far more complicated than we could ever imagine or test. Talk therapy made me restless and I preferred discussing the frustration with people I knew and loved, who saw me without requiring my effort to explain all the context. The rheumatologist's waiting room was a lot quieter than the pediatrician's, but it smelled a bit like moth balls. A patient for years, I still struggled to sit still and fill out the pain scale on the intake form. His white coat was equally crisp, but it lacked the air of hope I craved. With expert precision, his fingers found 18 points on my body that were so painful I cried out each time. Places I didn’t know were tender were hidden where muscles met and they seemed to be holding my physical world together by just a few fibers. He pronounced a diagnosis and grimaced: Fibromyalgia. No etiology, no treatment, just inexplicable wide-spread pain, weakness, and soreness. The word got stuck in my mouth when I tried to repeat it and as my body sank, my mom stepped closer. He spoke of pain medication I’d heard about on the news and he said antidepressants might dim the frustration. My eyes glazed. I thought about the powerful moment I stepped on the field ready to play my first lacrosse game. Invincible, fast, fierce - so I channeled that resolve as if I still had a stick above my shoulder. One dose of opioids had made me sick and cloudy after that broken ankle so long ago and I wanted nothing more than to soar like the birds, run with my teammates, walk up the stairs with my sister even if I had to do it while in pain at least I would do it with full awareness. Pain had this way of reminding me I was still alive. Numbing it with cloudy grey felt like surrender. Summoning all the power I had felt in my own ancient days, I looked him square in the eye and said, “no more drugs, I want something that can heal me.” Quiet, fierce, defiant, I heard the voices of my coaches encouraging me to stand my ground as if I was about to take a shot before the buzzer. I looked at him with the same hope I mustered to fling the ball across my heart and into the back of the lacrosse net and I could feel my mother stiffen in my periphery. The glowing authority of the white coat grew dimmer. Suddenly it felt like we were on different teams.

I grew up learning about the God who crafted us from dust, breathed life into us and wanted proximity to us. Though questions bubbled up in my mind, I had long ago accepted the authority of church people who culturally accepted pharmaceutical pain relief but became awkward about physical movements that could insinuate sensuality or pleasure. The Holy Spirit was said to dwell in me if I invited Him to,  but I couldn’t imagine why a holy and loving spirit would want to live inside my broken and painful body. I didn’t have the right words to ask why, but our circle perceived it risky to look at how other religious cultures had learned to care for their bodies through breath, movement, and meditation.

On the other half of my cultural upbringing, spirituality was acknowledged as a vestigial feature of religious making. It was allowed to occupy the white clapboard churches of my New England home town but it was scrubbed from the ivory tower of Boston’s medical elite. My grandfather went to Harvard Medical School, a medical prestige fully other from it’s Divinity School, a university that set a standard of excellence for our young nation. No wonder the body seemed separate from the soul and art from science. We were afraid of the unknown yet we claimed faith in so many mysteries.

The first gift my rheumatologist gave me when I asked him how I could heal for a thriving future was a book called The Divided Mind by John E. Sarno. In it, I learned that pain was mediated in the brain and that the brain had power to reorder its psychosomatic connection through meditation, movement, nutrition, breath, and energy work. Divided between the orthopedic surgeon and researcher I had always wanted to be for other athletes, and the patient experiencing this awful word “fibro-” meaning “fibrous tissue” “-my-” meaning “muscle” -algia meaning “pain”, I read about a reality I’d never considered in my quest to build my resume for medical school. Sarno explains that there is:

a sad paradox. Medical research has become more laboratory oriented in the last fifty years. To be sure, this shift has produced some impressive results. But at the same time, human biology is not exclusively mechanical, and there are limits to what the laboratory can accurately study. The laboratory study of infectious diseases has been magnificent - it is very straightforward. But its very success has deflected attention from the influence of emotions. As a result, medical research has failed abysmally in many areas.

I knew exactly which areas. I made the jump and started talking to God about what was going on. Psychosomatic linkages between disparate areas of my life were becoming easier to feel and pray about, but they seemed dangerous to talk about. There was this God of the western world who wanted bodies covered up and listened to organ music while we sat in stiff wooden pews, drank alcohol socially and popped pills to heal our ails. But in my reading and praying I was meeting something ancient, un-contained by western/eastern geopolitical bounds, expansive with each new breath technique that I learned. “It” didn’t fit into my old frame.

At first I was appalled that my doctor had just prescribed me a book to read. I remember waiting for more while he shifted on his feet, scanning his brain for anything that didn’t come in a child proof orange bottle. He looked at my mom as if for approval and sheepishly shared that some of his arthritic patients saw success with acupuncture from a woman down the street. He said it was an ancient medicine and it had copious research but that it wasn’t the gold standard double blind study type research so he lowered his voice as if the allopathic medical gods might hear and smite him. “It can’t hurt” he shrugged. And after experiencing enough medicines with harmful side-effects, I booked an appointment immediately.

My acupuncturist asked about my story and wanted to know about my insomnia, digestion, emotions, the placement and the quality and the migration of my pain. She asked so many more questions than any doctor in a white coat had ever held time for. Holding my wrists gently in her fingers, she listened to my pulse with her whole being, at three different pressures. With eyes closed, she sighed, and I realized I’d been scrunching my shoulders and holding my breath. When she opened her eyes and met mine, she promised, “I’m going to do the best I can to help you. I think I know just what to do. We’ll try four sessions and if we don’t see improvement, I’ll tell you we need to try something else.”

Definition replaced my chaos, safety held my questions, and I miraculously fell into a deep sleep in every session. During those first two treatments, she only placed needles in my ears. I lay there with tears washing my temples, wondering how the one part of my body that hadn’t felt sore (my ears) could possibly be an effective treatment. I sensed how the body is woven together as Sarno’s words came back and invited me to explore the geography of my healing journey with full faculties: mind, body, and soul - all connected as one. Though daunting and vulnerable, acupuncture sat with me in my pain and then lifted something up and off each time. I’d become so accustomed to medicine that crept in and weighed like a heavy fog over my mind and body, but each needle felt like it pricked a tiny hole in the pressure cooker of the migraines and seemed to vent the intensity of each pulse of pain. My mind soared with thoughts of the ancient healers as my acupuncturist practiced her craft and my body released bits of heaviness. Sometimes I had energy to ask questions. Sometimes she answered with research and sometimes with a shrug and “it’s what my teacher taught me”. It was too ethereal to understand, too deep for her to explain to me, too intimate to order into sentences and report back to my family in a way they could understand, but after four weeks I was able to drive, my sister didn’t have to help me up the stairs, and I could make breakfast for myself.

___

Disconnection - with nature, with the past, among people, within ourselves as we pit body against mind - kept resurfacing in my mind during my recovery. It felt like I was re-learning my body, returning to her after a long winter season away. Wigwam Trail marked the place in the wind-swept dunes where Wampanoag families gathered for their seasonal fish harvest. It was low tide and I stood at the top of the dune with my back to history. Trails of tiny boat wakes buzzed around with beat-up 20 horsepower engines collecting piles of clams from the low tide flats. I always thought 20 horses of power was a lot. Does our culture crave to overpower? I grew up with fiberglass boat with a 300 horse power engine operating a GPS, depth finder, and radio. Young Amanda had never thought of the little plot of land hidden from the waves behind the dunes as anything more than a place to hide from the sun on a hot July day. But ancient families could sniff the storms on the wind and knew the depths by the swirls of the waves because they truly lived abiding with nature. Only a few hundred years ago, indigenous people fished the lake near the colonial house I learned to walk and re-walk in. They hiked to the cranberry bog near what now holds a beach parking lot and a MEMBERS ONLY sign.

My English roots strove for independence and elegance with the same urgency as my catechism strove to define absolute truth. Both were raucous in their own way of seeking superiority. I described my productivity level as “a waste of oxygen” in those days, and though I was intent on living, I had become so conditioned to the ways of the western world that I was in a constant re-negotiation with different versions of myself. One who strove to get back on the lacrosse field so hard she lied to anyone who stood in the way of her dream to run and play. The other needed rest, dreamed up beautiful words to describe her drug-induced dreams, and wondered what it would have been like to get a brain injury in an indigenous culture, how time and space would be measured only by the elements, how screens and deadlines and GPAs would be unimportant, how herbs might invite natural sleep, how waves on the surface of the mind might be still, how a mask that lied about what was underneath would be seen through and given space to heal, how my innate sense of smell might lead me to a cranberry bog, or sense a storm coming in the wind, no GPS necessary.

There’s a spiritual energy in physical healing that western medicine did not prepare me to see. There’s a mystery, a rootedness that is so deep it transcends the ceiling of my sky and makes me certain there is more to me than fibrous muscle tissue that held inflammation from an old head injury and didn’t have a waste management system efficient enough to release the chemicals that came in the child proof pill bottles. As my acupuncturist aligned the invisible channels of energy coursing through my body, my prayers coalesced. Boldly asking my Giver of Life for my own blueprint, I asked to be closer, to break He/She/It/Them out of the box that felt safe in the doctrine of my childhood and be redefined by my newfound comfort with mystery and physicality, with pain and transcendence, with the God who became human to experience it with us. My hope no longer came from a white doctor’s coat, and it stopped praying to the god I’d seen in paintings with a white beard up in the clouds of Heaven pointing one finger at the human form. Supernatural explanations could not be repeated in a randomized control trial, but the data of my patient journey was trending with the promises of ruins rebuilt. The city of myself came back to itself because each internal organ system was given intentional care and space to heal. 

If ancient cultures strategized to survive the natural storm patterns the same way in every land they inhabited, protocol would have led to their demise. If ancient cultures survived our colonialism, we may never have achieved the technological advancement that developed vaccines or created access points like telemedicine. But if modern humans continue to revere chemically engineered solutions more than our own natural processes, we might outpace our own evolution and lose the herbal and energetic and tidal connection to our very nature, our greatest healer.

If modern scholars held Scriptures with transcendence rather than lusty power to bend politics, we might expect to know a God who creates, heals, and restores. I found out there is no one methodology or variable that heals the sick and no one path to nurture a healthy community, so I concluded that traditional medicine, togetherness, and care must infuse, inform, and intersect with the development of modern innovation, just as our human capacities to understand nature and spirituality must be held with a measure of mystery. It’s not one, it’s both.

I abandoned pre-med but I still sought employment under powerful organizations that I thought I could change. I walked out of disembodied churches, but I still longed for the Holy Spirit’s breath to move through me. My story is not finished, but it is no exaggeration to say that my timid “no” to conventional medicine saved my life from addiction. Ancient and “othered”, traditional (ancient) medicine nursed me back to strength as slowly and powerfully as the tides fill the marsh. Modern and promising, digital health allured my hope that shared wisdom and stories could reach people who were less equipped than I was to face fibromyalgia and it’s still not just one, it’s both.

Birds soar back to our little estuary on ancient migratory patterns based on the magnetic pull of the earth. They have that GPS in their DNA and they respond to the pull of the seasons we’ve numbed and medicated ourselves from sensing. I read a Scripture once as a child that said God has as much care and knowledge and design in our making and living as God has for a baby house sparrow. So here in 2023, ten years removed from the days I watched egrets gather in the marshy lands of my hometown for spring and felt the needles of acupuncture venting the pulse of pain that pharmaceuticals could only fog, my pattern is both new and ancient, faith-filled and full of questions, resolute and humbled.

In this season, my mission is to soar on wings like eagles, to launch from a place chosen wisely, and to look with a grander perspective. It’s illustrated both by my pursuit of a doctorate in traditional Chinese medicine and my commitment to building a product that seeks to bring better healthcare innovations to the market. It’s known as a part of the digital health team within a medical membership organization that excludes many medicinal disciplines - yet seeks to do no harm. My mission wrestles with the power and privilege I have for having grown up in that colonial home rather than in a wigwam every time I stand on the dunes and wonder what an organization of healers would look like if it held both the ancient, embedded, programing of human healing with the modern, machine-modulated possibilities of technology. It’s held together by an intimate seeking to know God more than I’ve ever asked, and it's reconciling my draw to powerful systems with the love I’ve received from the grace-filled spaces often overlooked. It requires the wisdom of the ancients and ventures into augmented intelligence, and I, a forever student, am grateful that my hope in the white coat right-sized to an expansive view of who we are as complex human systems: soul, mind, and body.

I am here to free the body and restore the soul, and with people who resonate with it, this story is still being written.