Saturday, August 25, 2012

Guest Post: Sami's Story

Introducing Sami - a wonderful blogger for LOOP. Featuring a blogger as gutsy as Sami makes us very proud. Moreover, it makes us optimistic and enthusiastic for the future of IBD advocacy. 

'The Guts I Don't Have'

When I was fourteen and diagnosed with Ulcerative Colitis, it wasn’t a big deal. I defined my disease by what it wasn’t: Crohn’s, severe, terminal, cancer, or steroid-dependent. True, it wasn’t normalcy either, but I felt assured I’d be in that small percentage of IBD kids who live on just an ASA.  Why shouldn’t I? I spent only three days in the hospital post-diagnosis, after my doctors predicted a much longer stay, so I assumed that was a sign of things to come. When I returned to school, I actually felt embarrassed of my hospital stay. It just didn’t feel like a big deal to me. It was only three days. It was only UC. It was only my colon, a potentially removable organ. I defined myself by the guts I didn’t have and moved on believing my diseased guts were as close to normal guts as possible. I hit remission soon after.

That remission fell through a few months later. I flared worse than ever before, and some of the heavier medications were on the table. I remember listening to my pediatric GI break the options down and remembering my thoughts that very first night in the hospital. This wasn’t supposed to be me. When the steroids used to control my flare failed halfway through the tapering off process, I felt that gnawing feeling again. This wasn’t supposed to be me.

Both “flare summers,” as they’ve become known, I attended a sleepaway theatre camp in upstate New York. I was lucky to have been accepted and would have attended even I’d had to drag an IV pole along with me. Fortunately, I did not need to pack an IV pole, but I did need to bring steroids along with me. The theatre camp session directly conflicted with my local Camp Oasis session, a fact I was acutely aware of but which never bothered me. I defined Camp Oasis as Camp Whiny Sick Kid. Even during my roughest periods, I felt assured my guts were far too normal for that. I’m very proud of the fact that at my roundest and puffiest, I was not embarrassed to put on a tiny costume and pretend to be a bird onstage. I don’t regret my decision, as theatre camp gave me six great weeks of memories over two summers, but I am embarrassed of my attitude. At camp, like everywhere else, I kept my disease on the down low. I remember my roommates complaining to me that my (steroid-damaged) hair was all over the floor, and instead of using that opportunity to at least bring up my disease, I made up some ridiculous excuse. 

Don’t get me wrong; I believe that UC should not be the focus of one’s life whenever possible, but I took that belief to an extreme. I really only gave it attention when I was whining to my mom about it - I wish we didn’t have to keep a poop journal, I don’t want to tell my teachers, I hate steroids, etc - so it’s ironic I referred to Camp Oasis as Camp Whiny Sick Kid. I thought I was too mature and not sick enough for camp, but I don’t think I was right on either count. I don’t regret choosing theatre camp over Oasis, but I definitely could have benefitted from the lessons offered by a week at Oasis.

I can say this with a good amount of certainty because I spent a week this summer there as a counselor. At eighteen, I was just barely older than some of the campers, so I was able to experience camp from a unique perspective: young enough to relate to the camper perspective, but old enough to act as a role model. I felt terribly nervous on the bus ride to camp, even as I started to interact comfortably with the kids. Just two years ago, I could not possibly have been in this position, age aside. I just would not have been a good role model. I took my medications on schedule, but I did not embrace or take leadership over my disease, which are two of the main qualities Oasis strives to instill in young IBD patients. The past two years have changed me a lot, as I now have close relationships with other IBD patients and several organizations, but could I really be ready? I’d never attended Oasis as a camper, even the two summers I didn’t attend theatre camp and could, but here I was as a counselor. Craziness! I never imagined having a disease, but even once I had that disease, I never imagined myself doing this.

I expected Oasis to introduce me to a lot of examples of the guts I don’t have, which it did. When I met one of my co-counselors at the bus stop and she went through her medical history, my first thought was “out-of-my-league.” In some ways, then, I haven’t changed how I look at my disease completely. I still have a tendency to define myself by the guts I don’t have more than the guts I do. Then, we grew especially close over the week. As we opened up to each other, we found more similarities in our histories than differences. This was the girl I never imagined myself relating to, but here we were pouring Miralax together and laughing like crazy. I had similar experiences with many of the girls in my cabin and other counselors. I went to camp looking for the differences I expected to find, the presumed differences that led me to avoid Oasis for four years, but found similarities instead. One of my favorite moments at camp was when one of my shyer girls saw me pour my Miralax into my drink and yelled, “Hey, I take that too!” Those moments at camp are moments that seldom happen outside of camp, and they’re just one of many reasons I cannot wait for Camp Oasis 2013.

When I was fourteen, I made the choice to not let my UC define me and attend theatre camp over Oasis. I’m proud of that decision, but I wish I’d made it for better reasons and could have seen my disease for what it was rather than what it wasn’t. It sounds silly, but this summer, I learned that disease course does not define a patient nearly as much as attitude. IBD wasn’t in my plans, but if this crazy disease isn’t going anywhere, I’m okay with calling it mine. After all, it’s given me at least as much as it’s taken away. Oasis 2013, here I come.


No comments:

Post a Comment