The butterfly girl, the gamer guy, and me.

Posted on Posted in Original Crohn's End Network

(Featured the original “Crohn’s End” blog: Daniel’s stay in the hospital during his recovery from an emergency surgery due to a ruptured intestine.)

I met the butterfly girl this week. We have Crohn’s Disease in common. I met her at McKenzie Willamette. She is a young nurse who had been diagnosed when she was eight years old. Her Crohn’s has shaped her life in ways I will never understand. I let her know why sometimes it’s reasonable to hide our diagnosis. I have done it many times. Crohn’s is a long mouthful of information to have to explain to somebody. We don’t want to come across as being “know-it-all’s” with disgusting bowel habits. We don’t want to be thought of as anything less than normal. Yes, it is true that we have secret moments of embarrassment, and suffering that others probably do not understand, but most people do. We are vulnerable like butterflies hesitant to let the wind carry us away.

I met the gamer guy last year. He reviewed video games for a major publication. He could travel the world and pay his bills. I admired him. He and I were hospitalized the same night due to a flare-up. He was an entertaining fella, with stories to share about how the Crohn’s had really gotten him badly. He was missing a couple of feet from his large colon. He was diagnosed while just a teenager. He had stories to tell of travels and could explain the history of most any video game in vivid detail. He played them in the hospital room and occasionally watched cartoons. Even though Crohn’s had struck him while he was young, he refused to grow up and refused to play the games of old people.

I was diagnosed three years ago I am a newbie and still am emerging from my cocoon. I’m stationed in the hospital again. I’m being wrapped up in gauze and pumped full of liquids for pain management, nutrition, swelling, and antibiotics; tubes for taking out the pee, puke, and gut goo. I’ve had 30 inches of small intestine removed. My legs are being squeezed periodically by stimulation devices. After surgery I tell my family that I am like Neo in the Matrix, just waking up to the other side, only I’m not allowed to take out the tubes or rip out of my fleshy cocoon, yet… I said a lot of strange things that day. Most of it, I don’t remember.

What I do remember was feeling a sense of purpose. I felt a sense of desire to help others overcome similar issues. I felt a sense of connectedness to community unlike anything I had ever felt. I felt stoic, like Neo.

They seemed to be in some sort of agreement about the matter. My pain was not without purpose or meaning. They all assured me that I would get through this, and that with a little luck things could work out for the better. They pumped me full of a substance, unlike any gooey medication. This was something unfamiliar, but I liked it. I could feel it processing me, digesting me, and transforming me.

This project blossomed.