“A New Normal”: Reflections on Climbing with Chronic Illnesses
By Fallon Rowe
Content warning: mentions suicide
It’s been a war of attrition.
My body has gone in one direction, and I have found myself alone at the other end of the rope, pulling with all my might, slowly sliding toward defeat in a prolonged tug of war.
For me, it wasn’t like one day I suddenly woke up as a paraclimber. Small losses over time piled upon my shoulders, already weary from decades of climbing. The hardest part was facing the unknown, searching for answers.
— —
In Patagonia years ago, I arrived to El Chaltén an overstoked 19-year-old, loaded down with what seemed like an exorbitant amount of gear and bags. I craned my neck up at Fitz Roy, feeling the fear rise from deep within and get lodged in my throat. It looked impossibly steep, like someone had stacked El Capitan on top of Mount Rainier.
Over the coming weeks, heavy plodding on gear carries, copious amounts of dulce de leche and red wine, and bad weather blurred together. I took a round of antibiotics for a UTI, but persisted on the mission. The anticlimactic wait in a snowy tent at Piedra Negra only produced disappointment. Avalanche reports kept coming. Rime covered everything. We retreated, and went north with our heads down, crossing our fingers for better luck.
I became ill shortly after arriving in San Carlos de Bariloche. I nearly lost the battle with hemorrhagic E. coli dysentery, lying on a bed in a cold delirium in a hospital that had only one toilet. With the help of an Airbnb host named Marta — a kind Catholic woman who spoke no English — I slowly recuperated, finishing yet another round of antibiotics. Just as I felt better, the forecast for climbing nearby at Frey turned to endless rain for weeks. It was time to throw in the towel on Argentina. I flew home to Logan, Utah lost, out of money, and frail as I celebrated my 20th birthday.
— —
Soon after my return from that failed expedition, I was driving down to Salt Lake City, and I found myself pulling off the interstate prematurely. I couldn’t drive.
Confused and worried, I called my then-boyfriend. “I feel like I’m locked out of my brain. Not like I’m asleep, but as if it’s impossible to focus or stay in control. I don’t know how to describe it. It’s so frustrating. I’m going to crash if I try to drive more.”
The first symptoms of my dysautonomia were setting in, and I didn’t even know it.
That spring in Little Cottonwood Canyon, I was belaying my partner on a multi-pitch when that unsettling feeling returned. I existed in a hazy state of half-consciousness, hardly able to form words. Hanging in my harness from the smooth granite, I called him back down to the belay station. We rappelled, hiked down in a daze, and went straight to the hospital.
They scanned my brain, ran blood tests, and told me they had no idea what was wrong. I knew something was completely, deeply wrong with my body, but they couldn’t find out why. There was a primal intuition, unmistakable; my body told me loud and clear. The doctors assured me I was healthy and it should pass.
I went about my life, still experiencing the odd feeling while driving, but making it work for the time being. Then, on a climbing trip to Moab that season, I would randomly lose the ability to swallow at times, and it gave me a lot of anxiety. I thought I was going crazy, and so did my then-boyfriend. I started having headaches, new GI issues, and feeling daily fatigue. My body was ringing the alarm bells.
— —
My boyfriend and I broke up (a blessing). By summer 2017, I was climbing my best ever. I was functional enough to complete a solo road trip to Squamish, British Columbia for three weeks, where I lived in my car, met random partners in parking lots, and climbed my heart out. It was one of the best trips of my life. I lived a simple existence fueled by climbing.
I returned to school in the fall to continue my Geology degree. I went to Moab nearly every weekend to project the Crackhouse, climb desert towers, and party with friends. In October 2017, I traveled to Joe’s Valley for a weekend bouldering festival, and my life changed forever.
On a warm-up boulder problem called “Ankle Deep in Gasoline”, the top-out hold crumbled in my hands. I fell with the hunk of sandstone long enough to realize that I was screwed — I didn’t have a crash pad under me. I hit the ground, breaking my cuboid, talus, fibula, and 3 metatarsals, and tearing every ligament and tendon in my ankle. My grotesque foot and ankle made me scream with pain as some kind strangers drove me to the nearest hospital in their van.
I had two surgeries back-to-back to repair the damage. After the second surgery, when the stitches came out and the cast came off, I remember looking down at the injury, hardly recognizing my own leg. Swollen, red, scarred, stiff: I dubbed it “Frankle”. When I tried to move my big toe even a millimeter, I howled in pain. Physical therapy, icing, and elevating my leg ruled my life.
I couldn’t walk for 6 months. I spent most of my time lying in bed alone in my apartment that winter, wondering how long this torture would last. Miraculously, I managed to pass all my classes that semester despite missing over a month of school. When I imagined climbing or falling again someday with this reconstructed foot and ankle, it made me cringe.
I celebrated my 21st birthday stuck in bed with my foot propped up on pillows. I eventually graduated from a knee scooter to crutches, then from a walking boot to an ankle brace. I began toprope climbing with one leg, letting my right leg dangle down below me, unusable. My entire calf muscle had shriveled away from atrophy, and when I tried to drive again for the first time, my leg was too weak to push the gas and brake pedals. I was determined to regain my independence and fully get back to climbing.
— —
In the summer of 2018, I bought a stick clip. I led a sport route outdoors for the first time since the accident. I was much more hesitant with this new ankle, but as I continued up the cobbles in Maple Canyon, with green aspens all around me, I felt a release. On a rope, above bolts, trying my hardest (with both feet!), was where I felt at home again. This sense of normalcy was reassuring, and I had a glimmer of hope.
By August, some of the screws were “backing out” of the bones in my foot — you could see the metal straining against my skin. A third surgery to remove most of the hardware was brief, successful, and thankfully decreased my pain. A quick recovery had me in high spirits, hoping I could put this injury behind me.
Come early November, I crack climbed for the first time since breaking my ankle on a trip to Indian Creek. Then, I got sick with a respiratory virus that was severe enough to cut my trip short. After a freezing night in the desert sleeping in my car unable to breathe, I drove home to Logan.
— —
Two weeks later, I was standing in line on Black Friday morning at a gear shop. I started to feel hot and dizzy. I wondered if I should leave, but I decided to stick it out; I was almost to the checkout. By the time I swiped my credit card, my vision was going black. I felt my heart racing and my legs weaken. As I walked out the front door of the gear shop, sweating bullets, I fainted.
I woke up to paramedics taking my vitals, asking if I was pregnant, trying to figure out why I’d lost consciousness. I declined an ambulance ride, and drove myself the mile back to my apartment, where I slept for hours. I didn’t think much of the fainting episode; I’d always had low blood pressure, and had fainted a few times as a kid when my blood sugar had been low. I felt lightheaded all day, but dismissed it.
In the following days, my lightheadedness continued, and worsened. I found myself unable to drive more than 10 minutes at a time. That unsettling feeling that had begun the previous spring was intensified and insurmountable. At the time, I was working as a substitute teacher, youth climbing coach, and freelance cartographer. I would find myself concerned that I’d pass out in front of a class of students or while belaying one of the climbing team kids. I found that I could no longer belay safely. Looking up at the gym’s fluorescent lights, I’d stand there feeling my head fading away. I didn’t want to put anyone in danger, so I stopped belaying entirely. I’d often coach while sitting or lying down.
That winter, my symptoms advanced. Now 22 years old, I became a shell of my former self. Living alone in a small apartment, I threw myself into my cartography work when I wasn’t teaching or coaching. Making maps on my computer was about all I could force myself to do most days, and I was deeply depressed and confused by my body.
I craved exercise. I tried to snowboard, but my joints ached so badly that I had to give it up. I’d spend days afterward hobbling around with pain in my knees, ankles, hips, and neck.
I couldn’t boulder yet because of my ankle recovery, and I couldn’t sport climb because of the lightheadedness. I resigned myself to lapping the gym’s autobelay routes until I felt like I would faint. I’d lie down on the floor of the gym with my eyes closed, feeling my heart pound and my head swim, willing my body to feel better, wishing I had an answer.
In March 2019, now more than 2 years after my initial symptoms, my primary care doctor ordered me a 48 hour Holter monitor (portable electrocardiogram) to see if I had a heart problem. I wore the sticky electrodes all over my torso with the wires and device dangling around me. I looked in the mirror, not wanting to accept how I looked.
I went to the gym, tucked the wires carefully under my harness, and climbed until failure on the autobelays despite odd looks from other patrons. I hoped that exercise would trigger something that would show up on the monitor. When I later removed the adhesive electrodes, I realized I was allergic to them — I had deep welts all over my torso where they’d been placed. I cried as I gently washed my damaged skin. When a cardiologist read the results, he found nothing.
— —
I climbed outside only once that spring, in Moab on a trip with new friends. I found myself practically unable to enjoy it because I felt horrible, but I didn’t want to complain to people who didn’t understand what was happening to me. They barely knew me. I was moody and intolerable. I returned home and continued my quest for answers. My primary care doctor gave up on me after my blood work and Holter monitor test were normal, and completely brushed me off.
I realized that I would have to advocate for myself if I wanted answers. I made appointments with various specialists: rheumatology, neurology, ENT, etc. I was poked, prodded, scanned, tested, and interviewed to no avail. As I researched my symptoms online, it only increased my confusion. Diagnosis was elusive, but that deep intuition that something was very wrong was my guiding light. I couldn’t give up. In addition to that, I had extreme shoulder pain whenever I climbed.
I had to pause my search (and climbing) for 6 weeks to complete the final course for my degree: Geology Field Camp, a capstone class where you wander off-trail areas while studying the rocks, making maps, and putting together all the skills you have learned in college. My ankle protested the long days of hiking on rocky, uneven terrain, and my lightheadedness only got worse. I felt woozy under the sun, standing there at an outcrop, trying to focus on my measurements and observations, but feeling like I could collapse at any moment.
A professor I had once done research with refused to accept that I wasn’t capable of my old hiking abilities. She thought I was making it up for some reason, as if I wanted to feel sick and unable to keep up with my peers. I was supposed to be an accomplished rock climber and athlete, not a struggling, disabled student! She yelled at me in front of the class, mocked me as I nearly fainted on a hike, and accused me of faking it.
This only added to the extreme stress I was under. The unknown of my illness gave me no ammunition: I had no protection from the university because I had no diagnosis yet, and was entitled to no accommodations. I spent many nights crying alone on the bank of the Green River, watching the bats flit about overhead, wondering how I could make my death look like an accident. I hit rock bottom, and suicide was all I could think about. I wanted a way out.
— —
I managed to skate my way through the class and finally earn my degree, a huge win. I returned to Logan, and as fate would have it, ended up in the same cardiologist office as months before but with a different doctor. He diagnosed me with POTS, a form of dysautonomia (a malfunction of the autonomic nervous system that affects the heart and countless other body systems), but told me he had no clue how to treat it. He laughed as he told me to eat more salt, or try getting pregnant to help increase my blood volume. (Yeah, right).
Being diagnosed with dysautonomia pulled the rug out from under me. My mind swam with emotions. Relief and gratitude to finally have an answer that put all the pieces together. Validation, that what I had been experiencing was very real and difficult. Grief and loss, for decimating the life I had once imagined for myself. Confusion and anxiety, wondering how I could continue living (and climbing) with this incurable disability.
Now that I had a name for what was wrong, I had some power again. I could research treatments, find peers in online forums, and move forward with life. I got on a waitlist for a specialist in autonomic neurology — someone who solely studied my illness. But the nagging shoulder pain from the spring was severe enough to still keep me from climbing.
In August 2019, an orthopedic surgeon performed a biceps tenodesis on my shoulder, fixing my subluxed, torn biceps tendon. Another surgery in the books, and more trauma to my body, but with the hope of a functional shoulder in the future.
Physical therapy once again became my life. I concentrated fully on each motion, dutifully completing every exercise. Living alone with my shoulder in a sling presented problems: washing the dishes, doing my hair, and other tasks were challenging with only my left hand. Simple chores took four times as long as normal.
Thankfully, recovery was swift, and by early 2020 I was back to climbing as hard as ever. For my 23rd birthday, I was able to climb 23 pitches in the gym. My ankle had healed much more in the meantime as well, and I felt confident leading again. I now could tell when I was getting close to fainting, and try to cope before actually losing consciousness. I moved in with some friends in a cute house in town, relieved to have people around me again.
I figured out how to belay while sitting down, and started using belay glasses to help with the dizziness from looking upward. Being able to belay again suddenly opened the door for more climbing. I spent 3 glorious weeks in El Potrero Chico, Mexico, sport climbing on limestone in the sunshine, making friends, and reading books. I was dizzy the whole time: on the flights, at the market, walking to the crags, belaying on multi-pitch routes… but now, I could unravel the nuance of its severity and trust myself a bit more. It was extremely healing for me to go on a real climbing trip for the first time since my diagnosis and shoulder surgery.
I flew home just a few days before the initial COVID pandemic quarantine began. Months at home passed in a blur, and I was grateful for the company of my roommates.
— —
By summer of 2020, I finally got to see the autonomic neurologist at the University of Utah. She was just the specialist I needed. She performed tests, came up with a treatment plan, and gave me a lot of hope.
My primary symptom is presyncope (the feeling you get before fainting) as a result of blood pooling with insufficient blood volume and pressure. This results in my body trying to compensate by raising my heart rate, but I still don’t get enough blood to my brain. This is why I struggle to drive or stand in one place (like belaying) — sitting or standing in one position for a long time makes all of this far worse (“postural” is the P in POTS).
My dysautonomia also explains many other issues I have with sleep, digestion, and more. No wonder the individual specialists for each of these issues couldn’t help me in the past! All of these seemingly unrelated symptoms were actually all stemming from my malfunctioning nervous system.
She also diagnosed me with hEDS (hypermobile Ehlers-Danlos Syndrome), which is a hypermobility and connective tissue condition that affects collagen. It’s genetic and I’ve had it forever. This explains why I had been so susceptible to ligament and tendon problems, joint instability, and had needed frequent surgeries. It also predisposed me to developing POTS/dysautonomia.
Two years later, an allergist diagnosed me with MCAS (Mast Cell Activation Syndrome), which is commonly associated with POTS and hEDS. MCAS explains my many allergies, eczema, random reactions, hives, and more. The combination of hEDS, MCAS, viral/bacterial illnesses, and surgeries had all led to the downfall of my autonomic nervous system.
Finally, I had all the answers I had been seeking for years. Everything I had dealt with suddenly made sense in the light of these overlapping conditions. Tears of joy, relief, and validation all came streaming out. This was not my fault. This was not in my head. It was extremely cathartic and comforting.
— —
Since I first fainted in November 2018, I have not had a single day without presyncope, lightheadedness, joint pain, and other symptoms. This is my new normal.
“A new normal”: that phrase tumbles from the tired lips of doctors who have resigned themselves, who have given up hope of any progress. I can understand. They don’t want to give patients false hope. Best to lower the expectations. But the longer I’ve been shattering those “new normals”, the less power they have over me.
Since my diagnoses, I have found even more ways to manage my conditions. The two most helpful treatments for my dysautonomia have been consuming an absurd amount of salt and water daily, plus taking a certain medication from my neurologist. Staying active (despite how hard it is when lightheaded) helps a lot too! Since receiving the proper treatment, I have experienced a personal renaissance in my climbing. I have since onsighted and redpointed my hardest climbs ever, traveled to new climbing areas, and gained small climbing sponsorships.
I occupy a gray area, where I have imposter syndrome on both ends — I sometimes feel too strong to be a paraclimber, but not strong enough to be a ‘regular’ professional climber (whatever that means). I do not know where I fit into the community as a coach and athlete, but it doesn’t matter much to me. My conditions are severe enough to deeply affect my life every single day and make it difficult for me to work, travel, belay, climb, and drive. My frequent medical appointments act as constant reminders that I am, indeed, disabled. I am a paraclimber now, and there is nothing wrong with that.
I have found solace in Stoic philosophy, reminding myself of a Marcus Aurelius quote, “Where life is possible at all, a right life is possible.” I want to keep pushing myself in climbing and raise awareness for other athletes with dysautonomia/POTS, hEDS, MCAS, and similar conditions. Climbing keeps me active, healthy, and strong, and brings me immense joy.
I decide my new normal, with my attitude, perspective, and effort. I cannot control my symptoms or my chronic illnesses, but I can control how I respond to the situation. I decide if I want to try climbing on any given day. I choose the effort I put into addressing my symptoms with the tools I have available. I control my attitude and approach to managing my health.
I’ve learned that self-compassion and love for this broken body gets me much further than resentment.
In this war of attrition, I build myself up every day to counteract my body breaking down. It is a war that has no end, but that is the nature of life with chronic illnesses. Climbing through it all is so much sweeter than not climbing at all, and for that, I am grateful.
