… or back to square one …
“Between the searching and the need to work it out / I stop believing everything will be alright / Broken / We are broken”
Broken – Tears for Fears
Back in the mid-nineties ABC aired a highly-successful yet barely-made-it-through-one-season show called “My So-Called Life” starring Claire Danes. My celebrity crushes go like this: #1) Keri Russell. #2) Claire Danes. My wife’s celebrity crushes go like this” #1) Adam Levine. #2) Adam Levine. #3) Adam Levine. At any rate… This post is about the frustrations that come with being diagnosed seemingly overnight with an incurable disease you have never even really heard of before.
So there I was, a week after my first colonoscopy. One week and no improvement. Sitting on the edge of my bed; the sun creeping in around the shade, the morning half over and I’d nothing to show for it. I was waiting. Just waiting for the inevitable urge to go to the bathroom yet again. I had already lost count for the day (actually most of them occurring during the night). In my hand was my last pill. My Dr. had prescribed a one week blister pack of Prednisone. Why he thought that would be enough to keep things under control I don’t know. I left a message with him wondering, what was next? I was also on a drug called Colazal. Like I said though, no improvement in any of my symptoms.
I swallowed the last prednisone pill and washed it down with some Gatorade. Knowing it would only be a little while before I would see all of it again.
The truth was I was back to being stuck. Just like before when I couldn’t leave my front window to go and get ready for my colonoscopy. Crohn’s had sheep-dipped me.
“Sheep-dipped” is used in intelligence circles. It’s the act of taking a person and erasing them. Turning them into a ghost. What once was is no more. They then get to emerge someplace new – shiny and squeaky clean – a blank slate with a new lease on life. The only thing is, Crohn’s had already filled-in my blank slate and I really had no say in the matter. Instead of getting a cool new hair-cut (with a dye-job); a new name (Dirk Stonestorm); and a Jeep Wrangler to tool around in I was handed a malfunctioning immune system with a harsh penchant for beating the snot out of my colon.
Think of your body like a piece of IKEA furniture. One day you come home to discover that while you were out someone broke in. Only instead of stealing anything they just disassembled all of your furniture pieces. (Even across the void of the internet I can actually hear some of you gasping in terror – “It took me eight hours to put that damn desk together!”). My colon was once the really super-awesome SMÖGDUL Entertainment Credenza with optional subwoofer housing. Only now it lay about broken and useless. The discombobulated parts of it strewn across my bedroom floor. I was stuck. Stuck waiting for someone to come along and rearrange me into my former useful form. The truth was, I was broken.
The urge I knew that would be coming showed up. And showed up with a vengeance. I rushed down the hallway to the bathroom. I would end up staying there for most of the day. Only taking time to call my wife and beg her to see if she could get in touch with my doctor. To ask what was next. I didn’t know it at the time but I would come to really dislike his answer. Which was to go back to square one. I was to increase my prednisone to 40 mg a day for the foreseeable future (this is actually a low dose and those of you, my fellow IBDers, who are on 60 mg, 80 mg or even higher a day I really feel for you).
I didn’t recognize it at the time. But it was there. Clattering and tumbling about my mind. A tiny seed of depression. That morning it took root. Slipped into place in the field of my mind and began spreading.
What a strange new life I found myself living. The life of a sick person. My mind tormented by endless tornadoes of questions. Questions which mostly have no answers:
What the hell?
I mean, have you even heard of it before?
What did I do?
So this is my life now…
… My so-called life?