An old high school teacher of mine once made me promise not to be inspirational. People like me, he said, people who have more labels than a commercial racecar and more pills and treatments than Walgreens, only let their diseases win by becoming advocates and activists for said causes. It's a different kind of winning, for sure, but the proverbial "normal life" is nonetheless consumed in a sort of obsession with one's ailment and to speak out about it will only give it more underserved attention. It made sense at the time, in a Joseph Heller novel kind of way. But what if the attention actually is deserved? What if speaking out is actually the best thing one can do?
Since Senate Resolution 199 passed in 2011, the United States Senate officially recognizes Dec. 1 through 7 as Inflammatory Bowel Disease (IBD) Awareness Week. Not to be confused with Irritable Bowel Syndrome (IBS), IBL consists of Crohn's Disease (CD), Ulcerative Colitis (UC) and Indeterminate Colitis (IC), a family of autoimmune disorders of the hygienic, developed world that it seems everyone has vaguely heard of or known someone affected by but no one can actually describe, at least not in polite conversation. Even given extreme pain, fatigue, total dietary dysfunction and internal complications, IBD's worst and strongest of symptoms are shame and silence.
While the progressive trend of modern times and the increasingly anonymous and uninhibited medium of the Web has opened many difficult conversations from sex positivity to the complexity of gender identity, much of the affected anatomy and many of the entailed symptoms of many chronic diseases, but especially IBD, remain entirely taboo except in code words spoken in hushed tones underneath tables in buildings within a three mile proximity of a Mayo Clinic on odd numbered Thursdays between midnight and 2 a.m. And of course I keep forgetting the hand signals and how to point the flags.
This is where things get tricky, because the ad absurdum of this position, that all topics should always be appropriate and nothing ever off-limits, is absurd. A completely uncensored world without boundaries would be an unnavigable mess. In these times especially it is important to draw the line somewhere. But does it have to be drawn here?
Yes, bowels are not most people's favorite topic. And they make for boring television if you don't have an IV of drugs in your arm, even during sweeps week when they bring out that little arm to snatch up tissue samples. But what about health? Isn't everyone a fan of health? And dignity? Last I checked dignity was tracking entirely too well. And how about resilience in the face of overwhelming odds? That's plenty popular, until it becomes a daily struggle.
Society doesn't like to remind itself that one's life can change with a colonoscopy at 15 and then never be predictable again. People don't want to talk about a large population that is routinely robbed of the basic human dignity of toilet training and that has no cure for its myriad recurring symptoms. No news network will risk ratings on such unsung heroes fighting every day to survive in a cyclical quagmire.
And bowels? Why did it have to be bowels? Genitals, sure; we could make that work. But bowels? It'll make a punchline at best. But this is no laughing matter.
It is with this understanding that the populace will choose ignorance that organizations such as the Crohn's and Colitis Foundation of America (CCFA) are built, and it is for that cause that they deserve the chance to spread awareness not just for the first week of December and on May 19, World IBD Day. Resources are always out there, be it by CCFA, Great Bowel Movement (GBM) or just the collective online advocacy of an underrepresented minority whose core tenet is resilience. Fundraisers and events like CCFA's Take Steps and Team Challenge are happening all over the country. It's just that nobody talks about them.
So I ask you, for this one week at the very least, to get informed about IBD and be against stigma. Let go of your hang-ups and see the challenge for what it really is. If you're having trouble making the connection, I call upon the Asher Yatzar, the so-called "Bathroom Blessing" seen on the restroom doors of many synagogues, which I here abridge "Blessed are You, Hashem, our God, King of the universe, Who formed man with wisdom and created within him many openings and many cavities ... that if but one of them were to be ruptured or if one of them were to be blocked it would be impossible to survive and stand before You." So don't take your bowels for granted. It is with this spirit that we should empathize and advocate this week and all year.
Sam Ready is a college sophomore from Atlanta, Georgia
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