It feels as though the universe has been taunting me since birth. She beckons with whispers of promise, daring me to venture deeper into the vast, abstract abyss of time. But with every step she lays challenges in my path, as if testing how long I will endure before stumbling and falling: Ehlers-Danlos Syndrome, severe COVID, and now, chronic blood cancer.
Born with Ehlers-Danlos Syndrome, my body has always been a knotted tangle of faulty collagen, too stretchy and too fragile. It’s laced within my joints, skin, blood vessels, and affects so many aspects of my body. My joints frequently dislocate, my body is riddled with soft tissue rips, tears and pain, and for as long as I can remember, I’ve been managing these wobbly bones. Accepting early on that my joints wouldn’t last as long as everyone else’s and protecting them as best as possible became a priority. For years, caution, exercise, NSAIDs, and a growing expertise in resetting bones kept things managed fairly well.
Then COVID hit, a monster beyond imagination. The first time, I wasn’t just afraid of dying, I was certain of it. With hospitals overflowing during the outbreak, they considered me ‘young’ and ‘low risk’ and so began the daily remote monitoring while my partner followed their instructions for a semi-conscious house plant struggling to breathe. My skin erupted with spider-web blotches and my chest felt as though a grenade had detonated within. COVID ravaged my blood vessels, and my blood pressure became dangerously erratic with huge spikes. For months no one could predict if my body would heal. After a year, I finally emerge resembling a human but with a damaged heart and a sprinkle of PTSD.
Then came the rematch, four years later, when COVID stormed in again. This time bringing forth pitch black mucus, a stomach ulcer, and wreaking havoc on a frayed body already struggling to hold itself together. To heal my stomach, I had to abandon my NSAIDs, and that’s when my cancer finally emerged from the shadows no longer masked by the medication.
My cancer feels like watching a disaster unfold in slow motion with pieces fracturing and rupturing in excruciating detail. The real torment wasn’t even the severe anemia or the constant reminder of thrombosis being the real threat. It’s the incessant fevers boiling me from the inside out nearly every day for the past year. They’ve stewed my brain into a goopy broth, leaving me scattered and confused for far too long. Everything has utterly failed to control this symptom and now we wait to see if this final treatment option will end these godforsaken fevers or if they’ll stay with me forever. There’s that word, forever.
Sometimes, I wonder if my body was ever actually mine. Chronic illness has been my constant companion, influencing my understanding of fragility and teaching me to expect setbacks. COVID left damage I’ll never be able to mend and forced me to confront mortality, solidifying my foundation of resilience under extreme stress. Now, cancer has etched itself into my bones, an uninvited and unyielding guest that will never leave. Are there really more lessons that need to be learned? Maybe cancer is merely one more scar on a body already marked with a lifetime of scars. I’d like to say I’ve made peace with or even opposed the idea of living with cancer forever. But I’ve lacked the clarity to fully sit with that concept since my relentless fevers keep me locked in the present with fleeting notions of thoughts.
As I learn to cope with my limitations, I’ve come to realize that while chronic illness doesn’t disappear, it does transform. You adapt, you learn routines and develop resilience because there’s no alternative. Rarely is it grand or triumphal, but rather exhausting and so often frustrating. Each of these illnesses feeds into the others, creating a never-ending mess of doctor’s appointments, medications, side effects, and hyper-vigilance. Some days it feels like my body is unraveling thread by thread, and every action comes with the question: Is this safe? Will it cause another injury, strain my heart, or worsen a fever? While navigating grief and depression, I’m learning to accept the stark adjustments in my life each day. Sometimes, that means surrendering to rest, to tears, to the full weight of an emotional breakdown. Each small act of self-care becomes a quiet testament to perseverance and strength, gradually accumulating over time.
In the depths of these struggles, these illnesses have reshaped my perspective on time and sharpened my awareness of the absurdity of survival and the essence of living. Life isn’t about waiting for forever or chasing absolutes. It’s about embracing fleeting beauty, caring for ourselves and each other, and finding brilliant joy in even the smallest and silliest of things. I’ve always known this, but it’s never been clearer than in the haze of fever spells, where the present is the only place my mind can exist. The idea of forever is overwhelming, especially when it feels like an endless horizon. But maybe it’s not a place to arrive at, but simply an invitation to pause. To drink in and thoroughly appreciate each droplet of time, knowing that the present moment is all we truly have. Besides, what is forever if not a collection of moments?
Who really knows; I’ve only just started this journey and my relationship with my cancer will evolve and shift as time moves on. Cancer cannot be separated from EDS or long COVID because each one will always be a part of me. Thus, cancer is not the whole story but rather is a recurring character weaving in and out of a tale still being written. For now, I’m still in the delicate stages of finding treatment and taking it day by day, moment by moment. Embracing the emotions as they rise and fall. Leaning on past experience and taking my time to figure it out. After all, I do have forever.
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