29 | AFTER
I closed my eyes, slumped against the wall in the dim light of Universal Music’s Santa Monica studio A. A familiar fatigue had oozed through me—sludging up my thoughts, burning my eyes, leadening my head—until I surrendered to the wooden floor. I inhaled deeply, following the cool, climate-controlled air into my lungs, and heard the music clarify, like a tuned radio. Pouring from the speakers was the recording we’d just made of my song, “Sleeping in My Own Bed” and I felt of a surge of joy. Scattered around the control room were the engineer, producer, drummer, bassist, pianist, and my manager. We were deciding our favorite take before recording the next song. “Yeah!” Stray, my producer, said with avid Aussie intonation, “that’s the one, no?” I coaxed my eyes open to look at him, grateful I could trust his ears when mine had become fuzzy. “Definitely.” I smiled back, hoping I had conveyed convincing enthusiasm. Because it was real. Today was one of the most joyous and meaningful days I’d had in my 29 years on earth—I was fulfilling my decade-long dream of recording an album. An album of songs that came from depths I didn’t know I had access to, with phenomenal musicians who loved and elevated the music. I was even singing into a hallowed microphone Frank Sinatra once used. But despite this elation, I could not overcome my body’s imperative to crumple and my mind succumbing to fog.
11 | BEFORE
We called it Polar Dog Day. June 6th was the official day when all three members of our nascent religion must enter the frigid, freshly melted waters of our hometown's namesake, White Bear Lake. My fellow pagans were neighborhood twins whom I’d convinced, to their Lutheran parent's chagrin, to form our nature-worshiping church. Aside from an annual icy baptism, devotional practice mostly consisted of hanging out and doing homework in trees. I spent long contented hours perched on the limb of a holy Ash, reading and thinking, shrouded by a cloak of green, then amber and crimson, then remembered leaves.
19 | BEFORE
Alone in my university’s painting studio, I turned up the radio and walked back to my easel, singing along to the upstate New York golden oldies station. Once upon a time you dressed so fine, threw the bums a dime in your prime, didn’t you? Bob Dylan, a fellow Minnesotan, whose music would radically alter my vision of myself, eventually inspiring me to abandon academia to sing and write songs. It was past midnight on a Friday and I could hear the drunken shouts and laughter of students on their way to parties and bars. I would join them dancing later, but I didn’t drink. I abstained initially as a response to my father going to rehab at an age when my peers were just starting to sneak alcohol, but had since learned to relish lucidity. My few experiences drinking had taught me I was particularly sensitive to hangovers; I lamented how they left me physically drained and mentally muddled, swallowing precious days of my life. It was both an awareness of my mortality, but also a profound enthrallment with the mystery of human consciousness that made me feel wasteful dulling it down. Since coming to college I’d voraciously studied consciousness, taking neuroscience and existentialism classes, biology, acting, and Buddhism classes, devouring all angles into the enigmatic phenomenon, elated by my brain's growing power to cross-pollinate different fields of knowledge, to discover and articulate new ideas. Tonight though, buzzing from a victorious game with my intramural hockey team, Natty Ice, I enjoyed a less cerebral experience of consciousness, blissfully smearing colors onto a canvas.
21 | ONSET
Plastered to my sweaty sheets I willed myself to hobble to the bathroom to pee. I reached to flush and noticed the porcelain bowl full of dark brown liquid. I looked in the mirror and saw my neck swollen like a linebacker’s. My natural response was to push through illness–growing up I would pretend not to be sick so I wouldn’t have to miss school and fall behind in class–but my then boyfriend convinced me to see the school physician.
Strep throat and mononucleosis. I called my parents to say I wouldn’t make it home for Thanksgiving. “Do you think you should take the semester off?” my mother asked. “I don’t know,” I said, “there are only a few weeks left.” I had worked tirelessly through demanding senior year courses to maintain a near perfect GPA and I dreaded retaking them all. The same anxiety about falling behind when I was sick as a girl, about keeping impeccable grades, gripped me.
When classes resumed after Thanksgiving break, I shakily dressed myself and trudged to the art building. I was late. As Professor Knecht lectured, I leaned against the wall in the back, heaving breaths and feeling I might pass out. After class I asked my professor if I could have an extension on our midyear project. I explained my illness, that I was just so exhausted. “You’re not that sick,” he said. His wife was currently undergoing treatment for breast cancer and he had no patience for my fluffy sleepy disease. I heard for the first time, a refrain I’d hear throughout the next decade: “everyone’s tired.”
22 - 24 | AFTER
Year one. A year after I was expected to recover from mono, Dr. Anderson met my concern of persistent exhaustion with, “kids your age don’t sleep enough.” I felt dismissed, but was too uncertain in myself to push back. If she didn’t take it seriously, I thought it must not be an issue and would go away.
Year two. Dr. Anderson referred me to a sleep clinic where I filled out a questionnaire and was diagnosed with insomnia. I learned about sleep hygiene, that I should never nap, and that ‘sleepy’ meant ‘prone to falling asleep,’ that I was technically ‘fatigued.’ I knew insomnia wasn’t the issue. My poor sleep was intermittent, and the exhaustion persisted even when I consistently slept 8-10 hours a night. But at 23 years old, and feeling less and less like myself, I didn’t know how to contest the certainty of the medical authority I’d trusted since childhood.
Year three. “You say it’s been years?” Dr. Anderson asked, and agreed to run some blood tests. Everything checked out fine except for low vitamin D levels, a common issue for Minnesotans. But most startling to me, was a short line in her report that I only read years later, sleuthing through the medical records I’d requested she send to my new doctor when I moved to California: “Patient does not appear tired.”
Patient does not appear tired. My doctor, who had worked with me from the age of 16, who was my mother’s doctor, who knew me as the girl who played reverse hooky, had decided to note that my subjective account of crippling fatigue was contradicted by my objective appearance. I was in her eyes–and the eyes of many doctors to come–a girl who saw phantom ailments. And I was slowly joining that world of ghosts.
28 | AFTER
I clutched the steering wheel, terrified sobs mounting into rhythmic hyperventilation. First big tour. First panic attack. I had only played two shows of my three-week run supporting the British singer, Låpsley, and in my weakened state I found the physical toll unbearable: waking up early, packing the car with heavy musical instruments and electronic gear, driving to a new city, finding food that didn’t make me sick, unpacking gear into the venue, assembling and soundchecking a complex stage set up under tight time pressure, performing through painful exhaustion, disassembling the stage set up, repacking the car, finding food that didn’t make me sick, driving to the hotel, unpacking the car, crashing late into bed, wired and nervous before waking up early and doing it all again. On stage, I was near collapse and so murky I couldn’t trust myself to play the right notes. I’d devoted my life to music because singing made me feel the most alive and most myself. It was the feeling of telling the truth, that I couldn’t be questioned. But at these shows I felt like a fraud. I was fumbling through the motions on the fumes of sheer anxious energy, and alone, in the car, the relentless strain overtook me.
26 - 29 | AFTER
The following is a list of specialty diagnoses and treatments I received throughout my late 20’s:
Stomach ulcers – omeprazole. Asthma – a steroid inhaler, which corroded my throat and interfered with my ability to sing. Leaky gut syndrome – no gluten, dairy, refined grains or sugar. Allergies – no more morning walks through pollen-filled Temescal Canyon. Chronic fatigue – endless supplements and tinctures. Unbalanced energy – $400 tea brewed by a Chinese herbalist. Most of all, depression – “have you considered antidepressants?”
30 | AFTER
Mother visits. Something is wrong.
Staying with me for a few days in Los Angeles, my mom was shocked by my limited life. I slept for 10 - 12 hours a night and needed to lie down again by early afternoon. My diet was so restricted I could eat few meals outside of my kitchen. I felt a constant burning in my stomach, joints, and eyes. I’d stopped running and playing hockey as I’d be bedbound for days after. I’d hit so many medical dead-ends and was so drained I had mostly given up, but she, with the determination of a parent with an ailing child, got to work.
Lyme disease. A diagnosis. The relief of a label, a common language to dissolve the isolation of being belittled and misunderstood. But most of all, the relief of being able to trust myself again. How can someone regrow their energy, their very life force, when they’re taught they can’t be trusted? The doubt I’d internalized after years of dismissal by the healthcare establishment had me waging a war against my own deteriorating body. A diagnosis meant permission to rest, to take my illness seriously. I had just released the first single of the album I was recording, but I decided to put everything on hold. “Give it a year,” said Dr. Sugden, my new Lyme specialist, with hope.
31 - 32 | AFTER
Eight months taking heaving antibiotics, with no improvement and worsening stomach pain, I stopped. I was put on other aggressive medications, including Malarone, a drug for malaria. Every few months my mother flew out to California and drove us 7 hours to the Bay Area specialty Lyme clinic, exchanging thousands of dollars for me to be believed and try experimental protocols. At one point I was sent a bag of syringes and vials of taurine and magnesium chloride with instructions to inject myself in the stomach twice a day. When I asked how, I was referred to a youtube tutorial about self-administered shots.
I left California and had back to back arthroscopic hip surgeries in Minnesota, recovering at my mother’s house. Dr. Foley, who ran a nearby integrative medicine practice, prescribed me disulfiram, which new anecdotal evidence was suggesting could benefit chronic Lyme patients. The pharmacist explained that I could not drink alcohol while taking it or I would become severely ill. “You can’t even use hand sanitizer, it will absorb it through your skin.” I thought, “when do I ever use hand sanitizer?” It was February 2020.
33 | AFTER
Alina. My angel of reason. My Eastern European functional medicine doctor and nutritionist, recommended by a friend’s stepmother. She explained the caustic impact of summoning anxious energy when my natural energy waned: “You cannot recover if you’re in a state of constant stress. It is corrosive to your body, and the fight or flight response overruns other functions, including healing and repair.” She said the tests confirmed I had Lyme disease and coinfections, but that Epstein Barr virus, the cause of my collegiate mononucleosis, appeared exceedingly active. She explained my low T cell count, my low protein markers, and her theory that my compromised stomach lining was disrupting my body’s protein absorption. “You are young and healthy, we need to figure out why your body isn’t healing itself.” I had tried extreme medications and was ready for a gentler approach. I’d regained enough trust in myself to intuit that’s how I needed to heal. I recommitted to the Buddhist meditation classes I’d taken in my early 20's explorations of consciousness. They helped calm my nervous system and gradually recover some of the alert lucidity I’d once taken for granted. Before.
A year after COVID-19 ravaged the world, healthcare workers and their patients experienced post-viral fatigue en masse, motivating new research and pushing the previously disparaged condition into prominent cultural conversations; The CDC finally acknowledged Post Treatment Lyme Disease; And I released my album.
35 | NOW
My skin prickles as I lower into the chilled water of Hampstead Heath’s ladies pond. My body protests against the cold but I push off. I know that after a few strokes my muscles and joints, sore from my recent tour, will welcome the swim. When I moved to London, I chose a place near the Heath because I craved its forests, but had since discovered a love of its swimming ponds. Enticed in by the supposed immune benefits of cold water exposure, I soon remembered the aliveness I felt in the freezing lake dips of my youth. As I glide through the dark water, I am weary but sturdy. I designed my tour so it would allow me to do what I love most: sing. I stripped back my complex band setup to perform simply with a pianist. The nakedness of such a minimal arrangement, with no other instruments to hide behind, put my voice and songs through a trial by fire; I found they were enough. Stripping back also meant traveling light. Rather than driving a car full of equipment, we rode trains with a backpack and keyboard. I had come home from playing shows tired, but I had also tapped a deeper well of energy. The potent energy of purpose, of living, of sharing my heartbreaks and joys in an alchemical act with others who’ve felt and feel the same. I’d returned, too, with newfound strength–not physical, I knew if I swam too fast or more than two laps I’d still be depleted–but that unshakeable, unquestionable strength of telling the truth. I pass a duck settled on an algae-covered buoy. I am calm and slow, hardly disturbing the water, and she stares back, unruffled. At the next, unoccupied buoy, I stop to rest. I think of my former life skating sprints around ice rinks, of running for uninterrupted miles, and feel a familiar pang of grief, but it is overcome by a greater gratitude for where I am: floating, post-tour, shrouded by a thick canopy of leaves.
Later, I meet a friend for a stroll through the woods. We pass an old tree with branches enticingly just out of reach. Taking the challenge, we ascend. How many evenings had I collapsed early into bed, exhausted and aching, mourning a life unlived? But tonight, nestled on the limb of a holy Oak, watching the light fade from London’s late summer sunset, I am still awake.
Katy Morley is a singer-songwriter and painter from Minnesota, currently living in London. You can view her art at www.csmrly.com and her music at www.morlymorly.com. Katy bravely shared her story in a live virtual Healing Story Session during our annual event in February 2023. You can view a recording of that event here.
