When IR team member Jo Kemper sent us this piece to review in mid March, it was clear she had mixed emotions about letting this out into the public. Jo was not only concerned with sharing such a personal story, she was also wondering if it even made sense to put it on the IR blog. Her concern was that in addition to the raw nature of the subject matter, the story wasn’t entirely relevant to kayaking- and certainly not aligned with the fun loving, adventure seeking aspect of our sport that athletes and companies like to promote.
After reading it, though, we felt that it was an essential read for all serious paddlers. At its heart, we saw a story about a person who’s life has been immeasurably influenced by a sport, and what can happen emotionally and physically when that sport is taken away. This can happen not only through injury, but also through circumstances or even age. At first glance, it may seem superficial, but for so many of us, kayaking has defined who we are, how we choose friends and relationships, what we do with our money and spare time, and in some cases how we make a living. Who are we, if not whitewater kayakers?
On a more personal, subjective level, I also saw a story of how women suffering with real chronic pain are evaluated not only in the medical establishment but by friends and family.
We hope you find Jo’s story as compelling as we did, and we can’t thank Jo enough for letting us share it. If you'd like to listen to the story narrated by Jo herself you can access the audio file here.
-Kara Weld & IR Team
By: Jo Kemper
When someone comes to you with their pain, they are not asking you to decide if their experience is valid. - Silvy Khoucasian
What you are about to read has very little to do with kayaking. If you’re hoping to see photos of your friends stomping boofs, or to read about the epic first D’s that have somehow been managed over the last year, despite a global pandemic, this might not be the reading material for you.
Almost this time last year, after a night spent accidentally bendering with my 5-star house-mate quaranteam, I wrote to a close friend:
From 2017 to early 2020, I accomplished many of the paddling highlights, and a few low points, of my life. I managed to stack 2017 with dream paddling trips including the Clark’s Fork box, Lost River, Ashlu box and Fear Canyon on the same day, the Klinaklini, and a month-long paddling road trip in Pakistan. In 2018 I went to Mexico, British Columbia, and Zambia to boat, and in 2019 I did a more than 360-mile self-support paddling trip in the Northwest Territories. I welcomed 2020 properly from a Grand Canyon self-support kayak trip spanning the New Year.
In the same timeframe, I also missed more than six weeks of work, I saw two orthopedic surgeons, two neurosurgeons, had two MRIs, three sets of X Rays, three years of physical therapy, acupuncture, chiropractors, naturopaths, cranial sacral therapy, ortho bionic massages, TENs units, ice, heat, and mental health counseling, all for my back pain and fatigue. Without any relief for my back pain or fatigue, I was diagnosed with Epstein Barr Virus, chronic fatigue syndrome, fibromyalgia, depression, Hashimoto hypothyroidism, and low adrenal function. I tried cutting out every remotely fun thing from my diet. I drank celery juice for months. I tried everything I could think of, and afford, with the exception of a cortisone shot in my spine. I hit my insurance deductible in January. Nothing I tried made a dent in my pain. By spring of 2020 my mental health counselor was recommending psilocybin, and my physical therapist was recommending CBD, both for pain management.
I’d had episodes of debilitating back pain since 2015. I know of two specific times I landed flat, and hard enough in my kayak to see stars (2011 and 2014), to which I attribute the likely cause of my back pain. With the exception of a particularly bad episode in 2017, and occasional research, I avoided using drugs for pain management. Ibuprofen and similar products did nothing for me, and what little relief narcotics provided me, was not worth the side effects. I felt all the feels, and had a solid grasp on what I was up against. Drugs, while readily available, were not the type of solution I was seeking.
I was in a state, and not a good one. I was in a state of denial. I was denying that this intermittent back pain I’d suffered from for years was getting the best of me. I was denying that it had become more present than absent; it had crept into and was adversely impacting all aspects of my life, far beyond my inability to kayak. I don’t know when my pain stopped going away. It had come and gone on its own free will, seemingly unrelated to anything I did, for long enough to develop a dangerous familiarity. It used to come and go, and then one day it came and stayed, and I don’t know how long it took me to notice. My back felt like I had put it out months ago, and it was still very much out. I couldn’t deny my pain anymore, nor could I hide its relentless presence. For perspective, in the years 2016 through 2020 I paddled 282, 236, 208, 155, and 28 days per year, respectively.
In 2020 the second MRI report confirmed: “Collapse of the L5-S1 disk space and retrolisthesis of L5 on S1 of about 3 to 4 mm. There is severe foraminal stenosis bilaterally because of the collapse. There are also modic type 1 endplate changes. At L4-L5, there is mild disk degeneration with an annular tear that appears stable compared to her previous MRI scan from three years ago.” Due to COVID, it was still a month of waiting before I could see a surgeon after hearing this news.
I had already established an extensive relationship with pain before my back troubles started to plague me. I’d stomached enough pain to think I knew my limits, and tolerance thresholds well. I’d broken my femur, and it had taken two weeks to be diagnosed. I developed Sever’s disease. I’d broken my pelvis, ankle, ribs, nose, fingers, collar bone, and my hand badly enough to need surgery and a cast for nine months, and partially ruptured my Achilles tendon. I’d dislocated my shoulder, reduced it myself while swimming my kayak to shore, had it surgically repaired, only to later suffer chronic dislocations, have it repaired again, and then torn my rotator cuff. Every painful sensation I had ever experienced, combined, paled in comparison to what was happening in my low back. It felt like someone accidentally left a sharpened kitchen knife in my spine, and every movement I made distorted normalcy to avoid the knife’s prick. I’d lost control of my body. My limbs jerked, unexpectedly recoiling from an invisible stab, my legs buckled trying to outrun the shooting pain, and my sneezes sent piss running down my legs. I was incapable of moving through the pain. Sex was off the table, kayaking was unbearably painful, and doing nothing at all hurt just as much.
By the end of May, I couldn’t bend over and stand back up without assistance. Falling down in pain was a common occurrence. One time, a friend of mine witnessing my painful struggle ran over and proceeded to schmeer CBD balm on my lower back as I tried to stand up. I felt as if someone had just witnessed my arm accidentally going into a wood chipper, and then handed me a band aid. I walked out in the middle of a yoga class in too much pain to talk. I couldn’t stand up, let alone dance, at my good friends’ wedding. Barely capable of supporting my own weight, and staggeringly aware of the weight of my limbs, I begged my partner not to touch me, for months. As friends asked me to climb with them, saying it would feel elongating for my back, I tried to convey that just hanging from a pull up bar was more pain than I could tolerate. It felt as if my lower body were only connected to my upper body by my spinal cord, and that the whole weight of my lower half dangled from my spine, which felt like it was draped over a knife blade. This description did little to dissuade the invitations.
During these times, I was a peach, to say the least. My pain eventually manifested into anger and frustration and fatigue. Sometimes I lied about unavailability in order to avoid having to explain that I was in too much pain to go kayaking, or do anything. It was hard to carry on any kind of conversation while an invisible assailant was stabbing a knife into my spine every third word. In early June, I snapped at one of my friends after they questioned my decision to pursue spine surgery. “I mean if a doc told you your labrum was torn and you tried PT/Chiro/everything you could think of for three years, and the PT said it’s still not working, and your shoulder still didn’t stay in, and another surgeon also told you your labrum was torn, wouldn’t you be thinking at that point surgery was an obvious next step?”
After that, I stopped telling people about my back pain, and plan to have surgery. Undoubtedly, it was confusing to my friends who had sent savage missions with me, some only a few months prior, to now hear me spouting on about wanting to have spine surgery. My pain used to come and go, episodically. When it was there, it was unavoidable and debilitating, and when it was gone, it was completely gone. Each day’s first step out of bed could be met with pain, or no pain, and your guess would have been as good as mine, as to which it would be on any given day. One day the pain could be terrible, and the next day unnoticeable. For the better part of three years I thought my body had a personality disorder. It was maddening to be tormented by an invisible and unstable adversary that was flip flopping unpredictably between hibernation and total rage. I drifted back to the words of the first neurosurgeon I’d seen for my back in 2017, he told me to come back if the pain persisted for more than six weeks, then he told me to maintain a healthy body weight, core strength, and flexibility. Almost facetiously, I’d asked him which of those three things to maintain I should focus on, and he didn’t have an answer for me.
Jo in 2017
I don’t know if I was tired of being told I had mystery illnesses, or tired of being asked if I had tried something either ridiculous, or ridiculous not to have tried, or having to defend my pursuit of surgery, or if I was simply in too much pain to form words. I didn’t want to hear other people’s insecurities about the outcome, or anecdotes about someone’s second cousin thrice removed’s back surgery. I had my own fears, maybe the biggest of which was that I felt I was beginning to understand where suicidal tendencies can come from. Constant debilitating pain is the most physically and mentally taxing condition I have ever experienced. I want to be clear, I was not suicidal. I was actively seeking and getting help for my pain. I could not help but notice from under the protective blanket of my white skin, government employer provided benefits including paid sick leave, and a support network of stable loved ones, getting help for my pain was far more of a privilege than problem. I sympathized with people in constant pain who are unable to get help, and I think I understood how intense ongoing pain could lead to suicide. In fact, I couldn’t imagine it leading anywhere else. I was in no place to blame someone for that choice. I might have been in enough pain to support it outright. My pain was eating me alive. My focus had shifted from kayaking, to surviving. I was in a vacuum with my pain, clinging to tensile ten seconds of relief. I debated good pain vs. bad pain with my therapists. I questioned the directive to not do something if it caused pain. Everything caused me pain. If it didn’t hurt prohibitively while I was exercising, but afterwards hurt too bad to walk, was that good pain or bad pain? What about planking, when it took every ounce of my pain tolerance to hold the position, but the next day my back would feel slightly better, was that good pain or bad pain?
In all my prior experience with surgeons, they don’t want to cut you unless they think you need to be cut in order to heal. I was prepared to dive into the drug cupboard headfirst, and stay there indefinitely, if the neurosurgeon failed to find a need to cut me. I refused to let my mind wander to that possibility. I had listened to the Doctor Death podcast, and I already possessed a fear of spine surgery that could be described as irrational. I now wanted, even needed, one of my haunting fears to be my reality. I might as well have been hoping to be attacked by a shark. Wholeheartedly fearing, while simultaneously bestowing my only tangible hope for relief in spine surgery was enough juxtaposition to make my head spin. My pain forced my fear to become hope.
I only had one in-person meeting with the surgeon prior to my operation. Trying not to sound too eager, I looked him in the eye and told him if I came out of surgery in a wheelchair, and this pain was gone, I would consider it a success. I meant it. I would have willingly sacrificed my whole lower half, sex included, if it meant relief from the affliction consuming me. I would have hopped on the operating table right then if he’d let me. Though I hoped it wouldn’t come to it, I was prepared to bite my finger off to demonstrate to him the magnitude of my pain. I silently hoped his diagnosis would be severe enough to expedite my path to surgery. I learned that no number on the pain scale could account for the time I’d already endured, it would not count as an emergency. That did not stop tears of joy from soaking my mask upon being declared not only an eligible candidate for surgery, as soon as possible, but a textbook one.
My patient profile showed the surgeon indicated I was of sound mind at the time we met. It is hard for me to comprehend the expectation that someone in severe pain should be of sound mind, whatever that means, when signing up for in my words, any help I could get. Three years of describing my pain and symptoms to medical professionals had led me down a bunny hole of untreatable mystery illnesses, chicken versus egg debates, and a string of gas lit placation diagnoses. I had maintained a healthy body weight, core strength, and flexibility. Was I depressed? I might have been; I was in pain, I couldn’t exercise, or have sex, and it was not an easy process to get help. Was depression the cause of my pain? Or was it my thyroid? I had my thyroid tested at least eight times. Out of a genuine desire to get better, I had committed to doing whatever it would take to get relief, even if it meant jumping through every hoop. I am not a doctor, I tried the anti-depressant. I tried the thyroid meds, and the steroids, and the other thyroid meds. I was told it was a condition I would suffer from, and would need to be medicated, for the rest of my life. I was told each day on the meds would feel better than the day before, and that my life would fall apart if I stopped taking them. I never noticed any difference in a single symptom while on, or off, any of the medications. I was told my pain was fibromyalgia. My primary care provider at the time recommended hot tubbing for pain management. My post exertion malaise was attributed to chronic fatigue syndrome, and in one provider's opinion almost every single symptom I had could stem from Epstein Barr Virus, which was arguably untreatable as well. I think it would be quite safe to say I was closer to having lost my mind, than of sound mind, at this point. My prescription for relief thus far, given to me by a team of real-life medical professionals, was to stay fit, take drugs for life, embalm myself in CBD, eat some magic mushrooms, inject some vitamins, soak in a hot tub, do some Wim Hof breathing, drink celery juice and meditate. This combination of recommendations is from a neurosurgeon, physician assistant, naturopath, acupuncture and Chinese medicine provider, physical therapist, and mental health counselor - each licensed and respected in this community. I am not making this shit up, and I mean no disrespect to any of the providers who have helped me immensely on this journey. It cost me thousands of dollars over three years to get that “help” for my back pain, and it did literally nothing to relieve my pain. I was spiraling out of control in the unavoidable hamster wheel of medical help hula hooping hell. In retrospect, I was glad I didn’t bite off my finger to make a point to the surgeon. I knew my sanity was slipping.
In the nearly eight weeks between being told I was eligible for surgery and my surgery, I fantasized about screaming in pain and not stopping until someone put me under. I wished I had known the schedule for when that particular surgeon was on-call for emergency surgery. I agonized about the idea that COVID might shut down non-emergency surgery again, before the date of my surgery. The animated pre-op video describing the procedure made me too queasy to watch without passing out on my first few attempts. The pain scale, as described in the video, indicated I’d been operating between a seven and a nine for months. I had enjoyed precisely ten minutes below a five on the pain scale in the whole of March, April, May, June and the first half of July combined. I’d spent years undulating between zero and five on the pain scale, and now I couldn’t remember what zero felt like. I had accepted five as my baseline, and adapted my life accordingly. I tried not to describe my pain as a ten, ever, because that should have been the worst pain I could imagine. My imagination was tested frequently. Every time I thought the pain couldn’t get any worse, it would. It felt like my body was brittle, and a micro movement in the wrong direction would crack open a crevasse of pain too immense for me to sense the bounds. Immeasurable on any pain scale I’d ever seen, this crevasse was a dark and terrifying place, one in which I could not survive. I would stare at my abdomen wondering how the pain hadn’t exploded out the other side of my body yet, half expecting to see the tip of a knife blade emerging from my navel. An entire universe of pain was residing in the seven-inch-deep space that was tangible right there, taunting me from light years within and out of reach, festering in my own sinew. I considered going after it myself. I romanticized about what it would feel like to start cutting and not stop until I was holding that throbbing pain in my hand.
At night my pain crept into my subconscious. I would wake up writhing in pain, dying in my dreams. Whatever demise my imagination concocted would fade with my return to consciousness. I was not being butchered alive, or smashed by an automobile crusher, I was not on the operating table without any anesthesia, my organs were not being harvested while I rest on a bed of nails, an ogre was not plucking my exposed spine like a guitar string, I was not held hostage being tortured on a medieval stretcher, I was not giving birth to a giant turtle. Waking only changed the circumstances of my death by pain into my reality. I was on my bed, motionless, in too much pain to move, in too much pain not to move.
I had spine surgery on July 22, 2020, specifically an anterior lumbar interbody fusion (ALIF) at L5-S1. It is the best thing I did in 2020, that, and getting moral support kittens. My quality of life has improved exponentially, and though my struggle with pain is still very much real, I am privileged to share that this is my struggle. My pain has returned to the realm of manageable. Not everyone is as lucky. I am surrounded by the ongoing struggles of the people nearest and dearest to me. I know I am incredibly fortunate to be on the sunny side again, even if it’s still cloudy sometimes.
I’ve made a point of trying to write about my paddling adventures each year, mostly for my own pleasure of documenting the joy I experienced. This year has been different, and difficult, and demoralizing. I was hoping to be writing about returning to paddling after spine surgery by now. In truth, I am barely able to paddle flatwater, and it hurts, a lot. I thought I didn’t have anything to write about (if you’re still reading this, I obviously thought wrong). It is easy to slip into the FOMO, especially when following the endeavors of badass adventurers we know and love. This year hasn’t been the most pleasant type of adventure for me, and I’m not sure how I feel about sharing this account of it with anyone. I recently read somewhere, comparison is the death of joy, and it resonated.
I want to share something demonstrating I do rad stuff, too, but no one wants to see pictures of me doing my PT and playing with cats, and sharing much else feels a bit disingenuous right now. I’m not saying I haven’t done other adventures over the last year. I have, and each one has been amazing, for all its own reasons. I am simply revising my definitions, and I am celebrating my own victories.
Moral support shittens
I am finding new ways to challenge myself within the current capabilities of my body, and bandwidth, not defined by what others validate, on social media or elsewhere. I am trying to create an identity not characterized by the things I can or cannot do, for whatever reasons, but by the things I can choose to do, that bring me joy. Even if that thing (for now) is PT, for monotonous hours a day, for even more months on end. It brings me closer to my future adventures, and less pain, and that brings me joy. Maybe I should start calling them my Pain Termination exercises.
I can walk!
Whether you need an identity check, a stimulus check, a sanity check, or a raincheck to let your body heal, you are not alone. If you are in a dark place, check the weather. The sun is going to rise.
Back on the sunny side
If you are in a really dark place, please tell someone.
My email is firstname.lastname@example.org
Washington Listens Line – 1-833-681-0211 (9 am – 9 pm Mon-Fri, 9 am – 6 pm weekends)
Washington Warm Line – 1-866-427-4747 (24/7)
National Suicide Prevention Helpline – 1-800-273-8255
Mental Health Crisis Lines Southwest Washington (Clark, Skamania, Klickitat counties) – 1-800-626-8137 | TTY 1-866-835-2755
Therapy for Communities of Color – Text NOSTIGMA to 707070
Teen Text Support Line – 207-515-8398
*crisis line numbers, and more resources are available at www.nami.org