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Showing posts from 2011

But... There IS a Difference

This one may venture slightly away from Crohn's for a moment, but I promise I'll circle back to it. I just need to get this off my chest, be patient with me for a minute.
I went to a panel earlier this week on dance and disability. The panel itself was incredibly diverse, with disabled dancers and choreographers, a research scientist, educators, and a dance critic, among others. Each person had a unique perspective on the subject, which made the discussion interesting and inspired a lot of thought.
However, there was this moment about half-way through the night when one of the panelists whose experience was mainly in the dance world said that there's really no difference between a modern dance company like Merce Cunningham Dance Company (MCDC) and a physically integrated dance company like Axis Dance Company, both of whom just happen to be showing in Chicago this weekend.
To give a brief overview, Merce Cunningham was a pioneer in modern/post-modern dance. His company …

The First Thing They Should Tell You

It's been way too long. Sorry about that. Life post-graduation has kind of thrown me for a loop. But I'm back and I'll be writing more often now. So, without further ado...

I recently decided to participate in National Novel Writing Month. I'm writing about, you guessed it, a young woman coming to terms with her chronic illness. The novel itself isn't coming along very quickly, but the process of writing has inspired some interesting thoughts about Crohn's and my personal process of dealing with my disease.
So, I've come up with this list of the first things they should tell you when you're diagnosed. I'm not sure who "they" is. I'm not even that concerned with who it is. The idea is more about the message than the delivery. Here's what I've come up with.
The first thing they should tell you......is that this isn't going away, your life will be different from now on. I know, that's inherent in the word "chronic.&q…

Overwhelming Nuance - Dancing 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.

Exciting News!!

Alright folks, something really and truly exciting is in the works over here. I've been asked to contribute to this really awesome new channel that will center solely around Crohn's Disease. WEGO Health is this really amazing online community and they're currently launching a series of channels that deal with different diseases/illnesses/ect.
For those of you who aren’t familiar with WEGO Health, they’re a different kind of social media company – with a mission to empower the top 10% of online health social media contributors to connect with one another and with healthcare companies. They call those folks Health Activists – but they’re people like me and you who are community leaders, bloggers, on Facebook, on Twitter, leading online forums, and usually “all of the above.”
As part of their mission, WEGO Health has recently launched a new Health Activist video platform called WEGOHealth.tv where they are presenting the authentic voice of the online community in the form of H…

I'm My Own Woman! But could I get a little help...

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 as it…

A Guide to Talking About Crohn's

This comes up a lot. Every time I meet someone new, there's always that point where they know that I have Crohn's, we've talked about it briefly, and they have a vague understanding of what Crohn's means. One day, we have a more in depth conversation about what Crohn's actually is and how I live with my disease. At some point during this conversation, my friend/co-worker/family member/ect. will express their fear of saying "the wrong thing."

I totally understand. It's not an easy subject and we aren't really equipped with the tools to speak about disease until we are forced to figure it out. So, don't feel like you are alone. I'm right there with you. I work everyday to figure out the most effective way of speaking about my disease. Also, don't ever worry about offending me. Now, I can't speak for everyone with a chronic illness here, but I promise you, I am just thrilled that you are expressing interest. If you say something "…

I have Crohn's... Err... Sorry about that.

Do you ever find yourself apologizing for your disease? Now, let me clarify, I'm not talking about literally saying, "I'm so sorry, I have this disease called Crohn's." I don't think I've ever done that. I hope not, at least... I'm talking about those times when you find yourself kind of downplaying the effect of the disease or distancing it by referring to it as "this weird thing that's really hard to explain." I mean, after all, it is a weird thing, and boy is it hard to explain, but those moments always feel to me as if I'm saying "Sorry to make you listen to my really long complicated explanation of something that is deeply personal and not really your problem in the first place."

It usually happens like this:

Unsuspecting Acquaintance: Hey, Maggie! You want some of this food/You want to go out tonight/Some other completely innocent question?

Me: Thanks so much, that sounds great... but I can't. I'm not feeling t…

Love Letter to my Colon

Dearest Myrtle,

We've had our ups and downs over the past year or so. From near death to thriving life, I know it's probably been just as hard for you as it was for me. I want you to know that, while I know I often take my anger and frustration out on you, I understand that it's just not your fault. If it weren't for that pesky immune system always coming between us, our relationship could've been so much easier. Although, then I probably never would've really taken the time to notice you. So, I don't know. You tell me what's better.

You've done your darndest to keep me alive over the past few years. Like that one time, when you formed completely new pathways because you were so swollen that no waste could go through you? Remember that? I mean, it wasn't an ideal situation for either of us, but it kept us going for a while, and I guess it was a pretty smart move on your part in the end. So, thanks for that.

And now, Myrtle, we're on the up s…

Chronically Coming Out

I attended an event for my new internship with the Neighborhood Writing Alliance tonight. It was pretty incredible to see the different lives the organization has touched and to feel that I am a small part of that now. However, these types of events always build up to a slightly awkward moment: The moment when the food comes out. It was mostly finger food, lots of veggies and things. It looked wonderful, but since I was working the event I decided to stay on the safe side and just wait until I got home to eat. The last thing I needed was for Myrtle to throw a fit while I tried to garner donations for the organization.

As I sat next to my fellow intern listening to the series of fascinating speakers, however, she turned to me and asked if I was going to eat anything. The question was entirely innocent and absolutely nothing out of the ordinary, but it still set my mind whirring trying to find a simple answer. Should I just come out and say why I am not eating? Do I want to take the tim…

Take Steps, Be Heard

Yesterday, I had the pleasure of attending the Crohn's & Colitis Foundation of America's Take Steps walk at Soldier Field in Chicago. Our team, the Incrohnables, led by the wonderful Angela, walked along the Chicago lake front with hundreds of others in support of further research into the cause of, and a cure for Inflammatory Bowel Disease.

While I have some issues with the walk, (the talk of "overcoming" disease that seems to crop up with these events is always a little strange... although I totally understand that it comes from a place of encouragement and caring) I don't want to talk about that right now. What struck me most as I walked alongside this incredibly diverse group of people, each in some way affected by IBD, was the importance of community and a support system.

Almost everyone there, as far as I could tell, walked with a team of people. Some small, some large, almost all of them (including the Incrohnables) wearing team shirts. The shirts, som…

I feel great! and then...

Possibly worse than feeling awful all the time is feeling great for a while and then flaring up. Okay, maybe not worse, but incredibly frustrating nonetheless.

For the first time in years, I have felt like myself for more than a couple months. (Although, as I have come to realize, Crohn's is part of my "self.") I go places and my first thought is not whether there is a public bathroom close by. I wear heels without having to worry whether I will be able to walk the next morning. I treasure these things, which so often go overlooked, because they are not default for me, they are luxuries. For years I worried about these things almost constantly, and I had forgotten how freeing it is to be able to let those go, not entirely, but a little bit.

But then some small thing happens. I am stressed about school, rehearsals, or issues in my personal life and Myrtle begins to reflect that stress. The weather changes and my joints freeze up. I get my period and the flare that often c…

There is no end. It's chronic.

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 starting th…

And the diagnosis is...

As I sat on the ugly yellow floor of the bathroom in my suite my first semester at Cottey College, I wondered what was happening to me that my body would rebel against itself so violently. What was happening to me that I would wake up at five o’clock in the morning with a pain in my back far beyond anything I had ever felt before and proceed to get sick seven times within two hours? I had no control over my body, and after those two hours nothing had improved. Luckily, one of my suitemates got up early to study for a test and discovered me hobbling back to my bedroom. She rushed me to the local emergency room where they ushered me into triage and asked me a series of questions, one of them being the most pointless question ever to be uttered by a human tongue, “Can you tell me how much pain you are in? Just on a scale of one to ten?” I looked up at her from the keeled over position I had been in for nearly three hours by that time and muttered, “Ten.” Although, what I wanted to say wa…

Myrtle

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…

The Beginning

Alright, I figure if I am going to do this I need to do some filling in about my life and how it is shaped by Crohn's. Here are the things that you absolutely must know about me:I am a dancer/choreographer. I am currently pursuing a BA in Dance with a double concentration in Dancemaking and Dance Studies from Columbia College Chicago. I graduate this coming May. (WOOO!!) Obviously, dancing with a chronic disease is a complicated and confusing thing.  I was diagnosed with Crohn's my freshman year of college, but had been having seemingly random symptoms for years. At the time I was attending Cottey College, a small, two-year women's college in Missouri, where I grew up. It was a rough time and, after being diagnosed and getting set with a course of treatment, I never really talked about my disease. I, like many others who face illness, was determined not to let it define me, and so I did not discuss it, or really even think about it. Eventually, this denial wreaked havoc with…

Here it goes...

This idea came to me when I did a google search for blogs about Crohn's Disease. I found that, while there were a few people out there posting about the disease, very few of them discussed what it is to actually live with Crohn's. Mostly, they were posting medical articles and the like. While I totally understand and appreciate the value of staying up to date on current medical findings, I have often been frustrated by the fact that no one ever talks about the actual process of living with a chronic illness.
So, that's what this is going to be. I want to create a space to discuss what it is to live with Crohn's, not only for myself, but for others as well. Once we can acknowledge that Crohn's affects not only our physical, but our emotional and mental well-being, I really think life will get less complicated.