For a large majority of my nursing career, I spent caring for pediatric GI patients. I have an inexplicable affinity and fondness particularly for Crohn’s and Ulcerative Colitis. I sympathize in an almost visceral way with the chronic insidious nature of the condition. The circuitous roller coaster existence bookended by flare and remission. The chutes and ladders fruitless game of recovery and repair mystified me. The unexpected land mine of a simple food trigger could activate a cascade event resulting in lengthy relapse.
My role in their journey serving as a trusted healthcare navigator generated a trauma bonding dynamic. Each bounce back, a tiny piece of their vibrance vanished. Worn away like an eroded rock pummeled by the tumultuous waves of the ocean over time. And just like the lingering effects of a stormy undercurrent, the strongest parts remained vulnerable and exposed jagged imperfect beauty.
I was there for the diagnosis and when they aged out and transitioned into the foreign world of adulthood. I witnessed frail individuals having to face an insurmountable future of treatment. I knew there would be many that would fail their medications and others that would have to jump through the outrageous hoops of the insurance system trying to find that preferred medicinal miracle cocktail. I was all too familiar with the punishment of bowel rest, the looming possibility of complications, and the anxiety of those first trepidatious days of colonic peace.
After a year of mystery pain and a complete GI workup-I perused my own results and pathology and saw the familiar words IBD, Colitis, gross inflammation. During the weeks that led to my follow up GI appointment, I hid behind the heavy cloak of denial. I sat in my doctor’s exam room as she detailed the interpretation. Crohn’s, she said- the heavy weight of that simple word landed hard on me. Her no nonsense instructions delivered in a monotone cadence void of options or optimism. I tried to manipulate my way out of this predicament. Bargaining and offering up my best pediatric GI nurse knowledge-immediately followed by harsh laughter. She said one sentence that lingered in my synapses, long after the brief appointment. “Forget everything you know.”
It was at this point, my knowledge and hope drained from me like a deflated balloon concurrently rising high above my useless brain, words floated by-on a cellular level I understood-but my rational reasoning could not absorb.
After I was shooed away and dismissed- just another day at the office, I sat stunned in my hot car, looking out at the world going on around me. I realized this can be handled one of two ways. This would be my defining moment. In the movies this is when Rocky ran up the steps. I could embrace this diagnosis armed with the years of knowledge I have. Or another better option is I could lean into a healthy lifestyle, make some changes, and garner some “accountability” that I have so piously spoken of in the past.
Shamefully, I did not careen up the steps and puff out my chest with abandon triumphant in my newfound purpose. Instead, I sulked, cried, and pouted and with my final sputtering of self-induced misery-a sad attempt of lackluster rebellion I fought. And, then- the physical pain spoke much louder than any noise of irrational nonsense and self-pity. It dawned on me. I have been provided an opportunity to help from my new platform. I could support my patients better than ever before from this new perspective. All those past encounters cultivated from love, empowerment, and compassion- offered to many similarly in my new current circumstances fatefully had boomeranged back on me- a curative gift unknowingly to myself from myself, a restorative roadmap to healing recovery. And so, it is now- the real work has begun.
A Girl Her Hubs and a Suitcase 