Just returned from the Team Challenge Napa to Sonoma race and after being surrounded by more than 1,000 IBD advocates and 635 Team Challenge participants for race weekend, I felt inspired to give the blog a little lovin'. I met my first mother to give birth post-j-pouch surgery and was excited by her optimism and go-getter spirit. I spent time with old TC friends and met many fresh faces. I heard incredibly sad stories, but they were always told with an undying optimism. Every Team Challenge advocate I meet tells their story with a stoic acknowledgment of their personal tragedies, but their struggles are always overshadowed by an almost unbelievable positivity. And their altruism and strength is absolutely toxic.
But there was one problem. I was on the sidelines, once again. I've been receiving a lot of emails and phone calls lately from IBD patients that are feeling very real anxiety and depression due to their disease. My responses have been encouraging and positive: "you'll see remission, I promise!" or "your chipmunk face WILL disappear" and "just try to show your disease that you're boss." But, this past weekend I realized that unyielding positivity can sometimes have detrimental effects. Our Team Challenge teammate, Amber, was in ICU while we were in Napa. Amber has spent more than 600 days hospitalized since 2013 and more than 45 days in ICU. Though I felt extremely fortunate that I was healthy enough to be on the sidelines, I also felt angry. I felt angry that Amber has suffered so much. I felt angry that I couldn't run. I felt angry that for four years now, there have been constant and incurable interruptions to my life. Angry that I am not physically capable of being a sole caregiver to my child. Angry that I have only been able to complete two classes in an entire year since enrolling in school. Angry that I have spent more than 100 days hospitalized since 2011. Angry that my best days probably feel like most 30 year-olds worst days. Angry, that when I think of my fairly immediate future, all I can see sometimes are those mother-fucking OR doors opening, inviting me in. I just felt REALLY. fucking. angry. And, most poignantly, I felt like I deserved to be angry. I needed to be angry, if just for a few days.
|Katie's Crew tackles Napa to Sonoma|
Still, there is something to be said for undying positivity. Maybe even something to be said of the almost deluded sense of indestructibility that I see in so many IBD patients. I mean, fuck, I'm one of them. I've re-enrolled in school for the Fall semester because my sick mind can't accept the fact that I am most likely too ill to ever work a full-time job again, never mind working the hours of a DOCTOR. But, the thing is, I am utterly incapable of accepting defeat, even if that means flushing thousands upon thousands of dollars down the drain in tuition before my body proves me wrong for the 40,000th time. My body may be genetically engineered to self-destruct by the age of 40, but my mind has a genetic predisposition to fight like a kamikaze pilot: it is almost certainly going to keep firing bombs until my body takes its last breath.
I also need to take this rare blogging opportunity to thank the HUNDREDS of you that keep giving my brain this intoxicating power of hope. Katie's Crew helped the Crohn's and Colitis Foundation of America come $21,000 closer to a cure this season, which brings us well over the $100,000 mark since Katie's Crew was conceived in 2009. Every single one of you is the fuel that keeps me going. You are the light that Amber feels in ICU, the pick-me-up when we IBDers struggle to see an end to our vicious cycles of suffering. And if I do end up in med school sometime this decade, I will also be blaming each and every one of you for getting me there (especially Mary Boccard, Cheryl Boccard, Regina Orelli, Jo-Anne Lange, Donna Orelli, Matt Minlionica, Chrissy Whiteman, Billy Pearce and Gabrielle Orelli for personally sacrificing major amounts of time, energy, sanity and money to get Katie's Crew where it is today). I feel so incredibly fortunate that the positive forces and people in my life far outweigh the negative. Katie's Crew is so much stronger than IBD.
I think it's time, once again, to send that anger sailing for now. There's just too much work to be done.