I played by the rules. I got good grades, graduated from an elite college, lined up a fantastic job, never drank more than a few sips of alcohol until I was legal, stayed away from drugs (including coffee’s caffeine), and volunteered in my communities. I ardently abided by the rules as they seemed to promise success and yet, unbeknownst to me, my body wasn’t, or rather, was playing by its own set. On the morning of July 5th, 2011, I woke up following the rules which took the form of colonoscopy prep guidelines and upon receiving a Familial Adenomatous Polyposis diagnosis, was thrown into a world of chaos.
Amidst the post diagnosis distress, one of the more challenging things has been grappling with the existence, or lack there of, and expected benefits of rules. I found it frustrating that while defined rules clearly exist internally as F.A.P.’s numerous complications such as my cancerous colon (which I had removed shortly after my diagnosis) make sense and are initiated by our genetic code, these rules remain largely unknown to those of us subjected to their fall out. Consequentially, no comprehensive, standard protocol exists to screen for F.A.P.’s impact beyond the colon which leaves patients assembling their own piecemeal guidelines and hoping for the best.
After a year of deep-rooted depression induced by my unexpected F.A.P. diagnosis, I gingerly began following the rules once more as I moved forward with my life and past my disease. Shortly after, I developed a desmoid tumor above my proctocolectomy incision. I felt betrayed by my body, by my medical team who dismissed my concerns about my increased risk for desmoids since, according to their guidelines, desmoids rarely occurred even in F.A.P., and most importantly, by social conventions. Again, I struggled to understand my misfortune despite having played by the rules. I reluctantly heeded my doctors’ advice and had an immediate proctocolectomy, I started putting my life back on track just as everyone had urged and yet, at the very moment I accepted that F.A.P. didn’t need to dictate my life, it prominently resurfaced. Thrust back into a slew of appointments with various doctors vaguely knowledgeable about F.A.P., each insisting upon a different treatment path while denying the efficacy of previously proposed plans, I needed to guess at what person’s version of right was right for me.
We find ourselves desperately trying to discern the right way from the wrong way to handle our rogue body that knows no right or wrong, just the rules we don’t when in reality, there is no universally correct approach to dealing with chronic illness as a whole. Sure, outsiders insist we must uphold a post-diagnosis life of positivity either by carrying on with our life as if un-phased by our disease or on the flipside, by drawing motivation from our disease and doing something incredible as a result. However, these expectations can be difficult to follow when your illness undermines your body’s ability to observe other commonly accepted societal rules such as not soiling your pants past the age of five. Sometimes I feel FAPulous and driven by F.A.P. to do neat things I wouldn’t have done otherwise but other times, my disease makes me feel crappy (at times, in the literal sense of the word) and I believe I am justified in both of these opposing reactions.
Although we are rule breakers, we are not outliers alone in our health-related experiences and feelings. It took time for me to accept that I was more than this disease and that this disease was more than me. When I finally felt ready to connect with others who could relate to my post-diagnosis life, I found myself in some sort of elusive game of hide and seek. I identified with those whose bodies defied traditional conventions through a rarely seen mutation as well as by meeting cancer in-between childhood and adulthood, far earlier than expected. To ward of isolation, I needed to help develop and strengthen these communities to which I belonged. So, I waded beyond my comfort zone, turning to YouTube where I created the first channel for people with F.A.P., FAPulousTV, and later, to event planning, launching an organization that runs meet ups for young adults with cancer and is hosting Cancervention, Philadelphia’s first young adult cancer conference, in collaboration with Penn Medicine on April 18th(side note, if you’re in the area, please check it out here!).
My small-scale efforts at establishing supportive avenues, which emerged from my F.A.P. diagnosis, led me to realize that violating rules actually can result in progress far grander than that which I previously sought from following the rules. Just consider the outcome of history’s lauded rule breakers like Rosa Parks who helped diminish society’s bigotry by notoriously neglecting the rules or organisms that eclipsed those before them and achieved evolutionary success through the novel mutations conferred upon them. A rebellious body compels us to reevaluate the rules we assumed to be true and thus sets the stage for innovation. My unconventional existence forces the friends, family, medical professionals, and strangers I encounter to reassess their understanding of disease and its impact on young adults and in doing so, it helps reform the patient experience. In a world inundated with rules, I do struggle to find my place as a rule breaker and sometimes just feel broken. However, I take comfort in my unique ability to encourage others to think out of the box and break some rules with me for the sake of advancement.