Navigating the Bermuda triangle of rooms.

Flying Air Crohn’s / The giant, lemon-sized pill / A constellation of me.

 

I want to give in. I can’t take the routine anymore. Every day it’s the same crap. I sleep best in the early morning. Not really sure why. Perhaps because I get up eight or so times at night to go to the bathroom. Perhaps by the morning I am just so exhausted there is nothing else I can do. My body folds in on itself like a house of cards. A heaping mess strewn across my bed. I should say my towel really. I can’t sleep anymore without one or two of them. One beneath me. The other above. They catch the sweat that pours off of me every evening like a waterfall. Seriously, they could have held the Olympic Swimming Trials in my bed. (Except Ryan Lochte wouldn’t be allowed in because that dude pees in the water).

 

Once I feel I can get out of bed I shuffle to the living room. To my red couch. Where I lay and feel like Jabba the Hutt. A really thin and sick looking Jabba. This is about all I can do. This is the routine. I shove my pills into my mouth. They are just like those little creatures that Jabba so gleefully loved to eat: Prednisone, Colazal, Vitamin D, Zinc. I chase them down with some Gatorade. Knowing all too well I will very soon transition to another room: the bathroom.

 

I keep thinking about the real me. Or is it the old me? Whoever. Just not this guy wandering about the three rooms of his house. You see, this guy who stumbles from the couch to the bathroom to the bedroom – he’s not the real me. Or at least I have not come to accept him yet as the real me. The real me is lost somewhere in the Bermuda triangle of rooms I now shuffle between: the living room with the red couch, the small bathroom with the ugly wallpaper off the kitchen, my bedroom with my bed/swimming pool. Somewhere, perhaps behind that dreadful wallpaper or stuffed between the couch cushions is the real me, the guy before the diagnosis. The guy who had never muttered the words “Crohn’s disease”. He’s hiding on me for some reason. Playing some twisted version of Hide and Seek. “Are you there, old Ryan? Come out, this isn’t funny anymore.”

 

My day consists of gliding on autopilot throughout my three rooms. There is a fog over everything. I’m in a holding pattern. Somewhere below me obscured by the clouds is the runway to my old life. Every so often I catch a glimpse of a landing beacon but it’s never enough to guide me down. If I could just land I could crawl out of the flying prison that is now my existence. “Thanks for flying Air Crohn’s – What level of Hell do you want to visit today?” I want to land again; to press into my old self. The guy who never wore out the handle on the toilet. Who never sweated so much at night he had to change clothing again and again. Who never snacked on prescription drugs like they were popcorn. Who never hated what he saw when he looked in the mirror.

 

I’m sitting on my couch. Listening. Somewhere in the distance is a din of noise…

 

… it’s the highway: I-80/90 the Ohio turnpike. The sound of it cluttering up my ears. There is the rest of the world, moving forward, getting sucked along the dusty shoulder of life. Going places. Doing things. Exploring the paths before them. And here I am stuck on my couch. Stuck in the routine. Only today I decide it is time I turn my attention to yet another pill. It has been sitting on my coffee table for quite some time now. I’ve been avoiding it for weeks. It’s giant. As large as a lemon and I’m sure just as bitter. I will be hard pressed to fit it in my mouth. Scrawled across it are the words “The New You”. The drug manufacturer is Crohn’s. My mind has been asking me for weeks to face it. My body has been telling me for months that the old me was gone. That there is no path back. The new me is stuck on Air Crohn’s and is not sure of the destination, when we’ll arrive and what it will cost me. But I know I won’t be landing anytime soon. No need to put my seat-back and tray into their upright positions.

 

I take the pill into my hand; watch the blood pumping through my pale veins. I open my mouth wide and bring it to my lips. I choke on its bitterness. It’s as if I am swallowing the impossible: the entire universe and all things in it…

 

… and then I’m on Air Crohn’s again. Flying above the highway. Above the world and its bustling people. I look out the cockpit window and finally see where the old me has been hiding. He is burned into the sky; a faded constellation which forevermore will whisper the incomplete myths and fables about who I once was. Blurry stars I can navigate by but may never again reach.

 


6 Comments
  1. Rachel Mitchell Reply

    cowboysvscrohns.com
    Check out these boys site. Crohns affects several members of their family, and they are making a crosscountry ride to raise awareness and money…. Really great kids…. well college kids… met them at the outfitters they worked for in Montana… They are riding from Montana to Washington State…..
    God Speed to both of your efforts !

    • Ryan Reply

      I follow them on twitter. I would love to join them for a week. But they probably wouldn’t want a city slicker gumming up their rhythm. Thanks for commenting!

  2. Kim SMIDL Reply

    My name is Kim. I am 51 yrs old and when I was 14 I was diagnosed with ulcerative coloitis. I was in and out of hospitals having blood transfer fusions and IV therapy for 2 yrs. When I was 16 I had my whole colon and rectum removed and had an ileostomy. This is when my new life begun! I learned to water ski, went body surfing, bicycling and playing tennis. Nothing was going to keep me down! I was married and had 2 children. Life does go on! When I was 38 I had a new procedure done in St.louis it is called a BCIR, an internal pouch was made with my small intestines and I empty it with a catheter. I no longer have to wear an ostomy bag. It is very sad not many people know about this including Doctors. The surgery is only performed in a few states. It is an amazing surgery but just like ostomy surgery no one talks about it and there are 75,000 to 100,000 operations a year. We should be talking about it.
    It is a shock when you hear you have to have one because you feel like the only one. I am not embarrassed to tell any and when I do they are so surprised! I would love to help get the word out.
    Thank you for telling your story.
    Stay well!

    • Ryan Reply

      Thank you for commenting, Kim. What a journey you have had. I agree 100%. Information needs to get out there about the surgeries available to patients. I was very lucky. I only have a one inch round scar where my stoma was. My surgeon at the Cleveland Clinic removed my entire colon through that little hole. Perhaps you would like to write a guest post on the blog further explaining your surgery? Would love to have you write one.

  3. Jessica Reply

    Hi Ryan, Stumbled upon your blog through The Crohns Journey Foundation and upon reading this post, immediately started sobbing. My husband is the Crohnie (?!) in our family, and though I try to be sympathetic, I hate that I can’t understand how much he really means it when he says he’s suffering. Or why we have a hard time scheduling activities, or making plans, or leaving the house. Your writing made me realize – a tiny bit more – how much he’s suffering physically + emotionally and how I really need to turn my patience up – way up. Thank you for being out here in the world wide web. :) I tried subscribing, but keep getting an error.

    • Ryan Reply

      Hi, thank you for your nice comments. Sorry to hear that your husband is not feeling that well. Not sure why you can’t register for the blog. Are you on a MAC? Will ask our web guy if there is an issue we don’t know about.

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