Crohn's Chronicles: A blog about Crohn's Disease

Below is small segment of my Dance Studies Research Project, "Cripping Dance: Radical Representations of the Disabled Dancing Body." It's the bit I wrote about my own work, Overwhelming Nuance (excerpted below), which, as you will see, was inspired by the feelings of denial that so often accompany disease.  Nearly four years after I was diagnosed with Crohn's, it flared massively. Lost in the idea that "my disease will not define my life", I ignored for months the signs of the looming crash. This breakdown forced me to come to terms with the reality of my disease. I suddenly understood that the idea that the mind might overcome the body just supported the willful denial of my disease. After this experience, determined to force an openness about disease in my own life, I claimed disability as part of my identity and choreographed my own "crip" coming out.

I went to this panel/performance at Access Living  last Friday. It was on the intersections between disability, race and community. Very interesting. There was one thing that the moderator said, though, that really struck me. It's something I've read and taken note of before, but for some reason hearing it in this context really drove the point home. He made the point that disability and disease challenge the idea of "the individual." In American society, we're pretty much taught to take care of ourselves. Individualism is extremely important to the way we conceptualize our bodies and our minds. The "I" is at the center of the American dream. If I work hard and educate myself, I can rise through the ranks of society. So, what happens to this concept when a body must depend on others to perform certain tasks, or even to make it through the day? This is more of an issue for some types of disability than others. With Crohn's, for instance, as long a...

Denial is a way of life for me. I’m not in pain. I didn’t get sick twice last night. I can make it through the day. I’ll be fine. I don’t need help. I could go without my medication today. I don’t need a doctor. I’m good. Today is going to be better. I'm fine. When does positivity turn into denial? Am I lying to myself when I think, “You can do it, just keep on going.”  Or am I just staying upbeat? Where is the line drawn? Call it mind over matter if you want. I’ve always felt uncomfortable with that expression. More than anything, I want a place where I can talk about my disease. No one talks. Denial is not just internal, it is forced on you. We all do it. When someone says, "It will just make you stronger in the end!" they negate and deny what I go through everyday. There is no end. It's chronic.  You blame me for my disease, blame me for letting it get this bad, when at every turn you are denying me a place to talk about it. How messed up is that? I'm starti...

My dancing body. I pause at the barre, my stomach cramps and fondues are too much for me to handle. Close my eyes… gurgle, gurgle… relief. I can keep going. My weight fluctuates. One week I have no appetite. I drop five pounds. The next, I’m ravenous and gain it back plus some. I eat when I want to, because in an hour it could be a different story. Be careful though. Don’t want your rumblings to disturb the other students. Maybe just a light snack. Nope, bad idea. I get weird looks from the other students. I grimace and smile, always making light of it, got to keep other people comfortable. Internally, I curse Myrtle. That’s my colon. Yes, I’ve named her. Like Moaning Myrtle, the ghost from Harry Potter who lives in toilets? I got the idea from a book. Myrtle doesn’t care for tights and a leotard. Too constricting, puts pressure in all the wrong places. Grumble, grumble…