Skip to main content

Kicking Off Health Activist Writer's Month: Making a Crohn's Time Capsule

This month, I'm participating in WEGO Health's Health Activist Writer's Month Challenge, which means that, if all goes as planned, I'll be posting every day for the month of April. WEGO provides prompts and I write. I'm pretty excited to see what happens and also to check out the other bloggers taking the challenge. If you're interested in reading other blogger's posts (and I encourage it!) there are a couple different ways to go about it. Either search #HAWMC on Twitter or check out their Facebook page for links to a whole bunch of wonderful health activists' blogs. I will also try to link to any posts I really love right here in my posts, and I will, of course, be facebooking/tweeting/google +ing (is that a thing? Is it just +ing? +1ing?) throughout the month. So, without further ado, here goes the Crohn's Chronicles HAWMC 2012! Enjoy!

The prompt for today is to construct a time capsule that could eventually tell the story of my life with Crohn's. This is a kind of hard one for me, because my personal experience with Crohn's has been incredibly internal. So if anyone else has a different perspective, I'd love to hear what your time capsule would hold. 

There are a few trappings of the crohnie, though, that I think speak pretty clearly about what it is to live with Crohn's. Here's what I've come up with:

1) A heating pad 
A crohnie's best friend. I'm using one now. It's not a perfect substitute for a really hot bath, but it's almost as good. And requires a lot less prep time. I just throw mine in the microwave for a minute or two and in a few minutes Myrtle's feeling much happier.
2) A Humira Pen 
The only medication I'm on right now. It got me out of the most intense flare I've ever had and is now keeping me stable. It's a pretty crucial part of my Crohn's experience. 
3) My stuffed intestines 
It's not what you think. When I was feeling particularly crappy, one of my dear friends sent me a package that contained this: 

That's right. I have the coolest friend ever. A little pillow shaped like intestines. I call her Myrtle the Second. Grab yourself or a crohnie in your life one of these gems over at I Heart Guts
Like I said, I was having a particularly wretched go of it and this little gal made me laugh. Really hard. And now every time I need a chuckle she's right there. Sometimes you just need a good laugh, you know? 
4) The #crohnie hashtag, or any variant thereof. 
If you have Crohn's, or know someone with Crohn's, I sincerely hope you've encountered this hashtag. If not, check it out now. 24 hours a day, crohnies from all over the world are using this hashtag to tell their own stories. People are candid and honest and hilarious and absolutely fantastic. More than all of this, though, people are supportive. It is the most stunning example of what the internet, and Twitter specifically, can do that I've ever seen. We spend so much time, especially recently, focusing on the negatives of the internet, but this is a big point for the "pro" column. It is truly a community of people that all have one thing in common and are there to support each other, offer advice when we can, and just listen when that's all a fellow crohnie needs. Seriously, check it out. I'm not exaggerating, it really is this cool. 

That's my time capsule. I'm sure I could add a few other things, but these seem the most crucial. I guess my hope, if someone found this, would be for them to have an idea of what living with Crohn's actually is and to understand that, beyond the heating pads and medication, we are just people trying to make it through the day like everyone else. Also, I hope they chuckle a little.


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 no…

HAWMC Day 9: Keep Calm

Today's prompt is to make your own "Keep Calm" poster. 
I thought for a while about what I wanted to put on mine. Honestly, I think it's pretty hard to do better than "Keep Calm and Carry On." Seriously. It's catchy and it's to the point. Perfect. I considered the raunchy options: Keep Calm and Keep Pooping, Keep Calm and Break Wind. I considered the needy: Keep Calm and Call Mom (I mostly really love that this one kind of rhymes.) Eventually, though I ended up with this:

That pretty much sums it up. Just do your best. I think this is all any of us, chronic disease or not, can expect out of ourselves. It's something I'm trying really hard to keep in mind. Just do your best. That's it.

Oh, and have you guessed what my favorite color is yet?

What would your "Keep Calm" poster say? Make one! Share it in the comments! I would love to see it!