October 17, 2011. I run across the basketball court, catch a rebound, twist up court, passing the ball to a teammate. As I twist, I feel an intense, stabbing pain in my right abdomen, as though a knife was driven into my ribs. I limp to the sidelines and collapse. As I am lying on the gym floor, it hurts to breathe. I can only manage shallow breaths, otherwise the stabbing pain intensifies. I try to sit up but can‘t. Paramedics are called and I am taken to a nearby hospital. The doctor in the ER diagnoses me with a muscle strain and says that I should be able to return to sports after three weeks of rest. But that never happened…
“Dreams don’t work unless you do.”
Up to that day, I had been living by this John Maxwell’s quote. I was a fourth-year engineering physics student driven to excel in academics and in sport. I was pursuing a career in the energy sector to help fight climate change. 4am study sessions were routinely complemented by morning workouts for a half-ironman triathlon I was training for the next summer.
Career fairs, job interviews, house parties (it was my final year after all) – rest was an afterthought in my jam-packed schedule. Staying busy gave me a sense of control over my life. Everything was going according to plan and it felt like nothing stood in my way.
Then, on that evening, I twisted my back and the fate of my entire life.
I took the next week off of school to recover at home, where I alternated between my bed and the couch. The Naproxen I was prescribed did nothing to calm my debilitating pain. Every move I made had to be carefully calculated – if I stood up or bent over without bracing my hand against my right abdomen, I’d be punished with hours of stabbing pain. My sports doctor reassured me that it can take several weeks to heal and encouraged me to return to class. I followed her advice and yet, one month later, it still hurt to breathe. To make matters worse, I had fallen behind in every course and couldn’t afford any more time off to rest.
I gritted my teeth and pushed through the pain assuming that, like all my previous injuries, it would fade with time. Instead, over the next few months, the pain worsened and spread to the left side of my abdomen, then up my back and neck. An hour into studying, my mind would be consumed by intense, sharp pain in my ribs and neck. Cryogenics equations that I could comprehend a few minutes earlier suddenly made absolute zero sense, no pun intended. I was mystified. Most of the specialists I saw assumed that my body was just recovering very slowly. My sports doctor suggested that there might be a link between my pain levels and stress. She recommended that I follow-up with my family doctor to discuss stress reduction strategies, but his office was a three-hour train ride away and I didn’t have time for that.
Even while healthy, engineering physics was a never-ending treadmill of work, but now it felt truly insurmountable. I skipped class to study for mid-terms and complete assignments. I overworked myself to meet deadlines, then spent days recovering in bed, and repeated the cycle. I constantly felt on the verge of a breakdown. One afternoon, during a physics lab, I grew agitated over my struggles to focus. My heart began racing, hands trembling, and I developed a tingling sensation that quickly radiated throughout my entire body. After another visit to the ER, this episode was diagnosed as my first of many panic attacks. I was utterly burnt out.
Despite my health challenges, I graduated on time and accepted a job offer from an energy consulting company. I had done it! I had conquered my final semester. Free from university stresses, I took most of the summer off to relax and gradually, my pain began to subside. I was elated. I figured that the worst was over and that my health scare was just a small blip on an otherwise smooth road.
Oh, how wrong I was.
While some chronically ill patients fall ill in a matter of weeks or months, my decline took years. Shortly after I began work, my pain returned as a deep, dull ache spanning my whole body. Fatigue, brain fog, and anxiety made the most trivial tasks seem strenuous. I’d labor over a two-line email for 45 minutes before hitting send, still unsure of myself. After meeting with clients and coworkers, I’d instantly forget everything we had discussed and would spend the rest of the day stressing over it. Mid-2013, I quit playing sports and cut back on my working hours, citing ‘lingering pain from an old sports injury’. At the end of the year, I reluctantly took a leave of absence from work to focus on my health, expecting to return a few months later.
I’ve never returned.
After a long series of referrals and medical tests, I was eventually diagnosed with fibromyalgia (FM) and myalgic encephalomyelitis (also called chronic fatigue syndrome or ME/CFS); poorly understood conditions with no discernible underlying causes. Experts believe FM and ME/CFS can be triggered by infections, physical or emotional trauma, or may be due to genetics. My doctors hypothesized that my illness was a result of physical trauma and stress. Following my injury, my heightened stress levels amplified my pain levels, which led to more stress, and so on. The muscle tissue I had initially injured had likely healed within a couple of months, but by then, my brain was locked in a vicious cycle of pain; a cycle that would be hard to reverse.
Despite exploring many treatments and medications, my illness continued to progress. The pain and fatigue were unrelenting. I stopped leaving the house, aside from the odd medical appointment. I struggled to digest food, even on an elimination diet, and lost 50 pounds. My newly retired parents became my full-time caregivers.
We were all helpless bystanders to my decline.
Days, weeks, and months blurred together. Every morning, I awoke unrested, aching from head to toe, and dreading every moment of it. My dad prepared cooked oatmeal with blueberries and my mom spoon-fed me. “How did you sleep last night?” she asked. “Not well,” I whispered. The only thing worse than my nightmares was waking from them. When I finished breakfast, she offered me water through a straw. I raised one finger signaling, “Yes”. This was how I communicated when I was too tired to talk.
My existence had become clouded with a steady stream of sensory threats, physically harmless yet impossible to ignore. A friendly voice sounded shrill, gentle hugs stung, warm sunrays were blinding.
My own senses were betraying me.
I kept moving as much as my body would allow by walking laps of my upstairs hallway with breaks to rest in bed. Back and forth, back and forth, back and forth, rest. Back and forth, back and forth, back and forth, rest. My mind never rested though. “Where did I go wrong? Why can’t anyone help me? I can’t do this anymore.”
Suicidal thoughts were always looming. I tried to drown them out by immersing myself in storytelling podcasts. I figured that if I didn’t give myself space to think then my mind wouldn’t go there. From the moment I woke up till the moment I fell asleep, I listened to podcasts. Some days it worked, on others it didn’t.
I knew that I needed all the help I could get. I texted a few of my closest friends, “I’m struggling and desperately need your support.” They responded and relayed the message to my broader circle. From that point on, I rarely went two consecutive days without a visitor.
It was painful to see my friends see me in my withered state. Our hang outs felt somber. They’d sit by my bedside and we’d whisper our hellos. They’d update me on their life, I’d fill them in on my upcoming medical appointments, and then we’d chat about the NBA. I could see the anguish hidden beneath their smiles, as I’m sure they could see mine.
We were both grieving the loss of my former life and fearing the grim future that lay ahead of me.
It was bad enough that my own life had fallen apart but I also felt like a burden to my friends. I knew that I had to find a way to lighten the mood. Prior to getting sick, I loved making people laugh. There wasn’t much to laugh about those days, so I would need to get creative.
One day, when I heard my parents greet my friend Ivan at the door, I had an idea. I summoned all of my energy, climbed out of bed, and stumbled behind my bedroom door. As Ivan entered my room, expecting to see me sprawled out in bed, I grabbed his shoulder and whispered, “Boo!” Startled, he jerked his head around and we both had a good laugh. The mood of our visit felt lighter than usual afterward, so I pulled the same trick on every visitor from then on. I often felt too fatigued to carry on a conversation. Instead, my friends would read funny one-liners off of Reddit. I’d laugh so hard at some of them that it hurt to breathe and I’d beg them to stop. I memorized my favorite ones and recycled them on all of my guests. When I ran out, I spent my days in bed brainstorming new ones.
Humor became one of my most important coping mechanisms.
My friends were my moral support during those months of intense suffering. They helped me hang on until I received the care I had needed all along. In June of 2017, I was admitted into a pain management program at Toronto Rehab and things began to turn around. Through the coordinated supervision of my medical team, we adjusted my medication and I slowly introduced physical therapy. It required lots of trial-and-error, but I gradually learned how to work within and push the limits of my illness. I started by walking more laps in my upstairs hallway and climbing a few stairs each day. My pain and fatigue spiked, but I stuck to my plan. The next month, I went for my first walk outdoors in over 18 months! I was so happy I nearly cried; everywhere I looked was so full of color and life.
My health has continued to improve to this day. I have experienced many setbacks along the way, but my family, friends, and medical team have been there to support me throughout. For them, I am forever grateful.
I have come to see my chronic illnesses as both a blessing and a curse.
I lost nearly everything, but in the process, realized what was most important to me. My suffering has gifted me the opportunity to find a deeper meaning, to turn my pain into purpose by serving the chronic illness and disability communities. Just as my friends had done for me, I sought to be a voice for others suffering in silence. With my love of storytelling, the next leg of my journey seemed obvious: I launched a podcast, Discomfort Zone that features my family’s journey and stories of other chronic illness and disability advocates. My guests, listeners, and I are finding comfort by turning towards discomfort, by welcoming it and laughing at it. In doing so, it loses its power, allowing us to heal and grow.
Jason Herterich is a podcaster and chronic illness/disability advocate living in Toronto, Ontario. He received a Bachelor of Applied Science in Engineering Physics from Queen’s University in Kingston, Ontario. Listen and subscribe to his podcast on Apple Podcasts, Spotify, Google Podcasts, or his site invisiblenotbroken.com/discomfortzone. His handle on social media is @dzonepodcast.
Image courtesy of Tim Marshall.