Skip to main content

HAWMC Day 4/5: Why?

I know, I missed yesterday. I'm sorry. But it does say in the rules that we have two free days and I had a good reason, I promise. Maybe one of these days I'll write two to make up for it.

So, back to writing. I'm going to use yesterday's prompt because I kind of love it and I've got something to say about it.

The question is: Why? Why do I feel the need to write my story? And my answer boils down to one simple answer. Because it's important for these stories to be told. It's important that there's some information out there about the day-to-day activity of living with illness. Often, when we talk about disease, we focus on research and cures and treatments. While I understand, support, and engage in these conversations, I'm far more interested in sharing experiences. I'm interested in the community that can form out of those shared experiences. I'm interested in the change that these communities and their stories can make within a larger culture. That's why I write. To be heard, but also to engage in the community of Crohn's, and hopefully to make some small change in the way our society views and engages with Crohn's.

It seems like I should have more to say. I went into this thinking that it was going to be a long, drawn out post. But I feel like that's all I need to say. I'll see you tomorrow.

Comments

Popular posts from this blog

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.

The issue with "mind over matter"

I think about this pretty constantly. Is "mind over matter" really a thing? Is it really possible to outsmart your body? If so, is this a useful tool? Or is it a harmful lie? Is it just kind of a white lie? Also, (and this is what the whole thing really boils down to for me) is the mind actually separate from the body? Are we our bodies or are we our minds? Do the two have to be mutually exclusive? Or are the mind and the body actually one and the same? My opinion on this subject has changed drastically and regularly over the years. Early on, right after my diagnosis, I was firmly ensconced in the pro-mind-over-matter camp. Without ever thinking about an alternative, ironically. Actually, this started long before I was diagnosed. For at least a year leading up to my official diagnosis, I experienced intense health issues and paid very little real attention to them. I just kept on going as best I could, thinking these symptoms would go away eventually. This, obviously, did n

Chronic Overshare

Every two weeks I take my Humira shot. No big deal. But, a couple days afterward the most wonderful thing happens. I poo. I mean, I take a dump . It's awesome. The thing is, I crap constantly. All the freaking time. Just not like this. This is one of those rare, deeply satisfying, glorious dumps. And I get to look forward to it every two weeks. It's a major source of joy in my life. And what's my immediate reaction every two weeks? What is the first thing I want to do as I saunter triumphantly from the bathroom? I want to tell people. I actively seek out someone to inform of the magnificent crap I just took. I'm genuinely disappointed if no one's around. My poor roommates.