When I was diagnosed with Crohn’s, the words meant nothing to me. The word ‘Crohn’s’ seemed as harmless as the word ‘banana’ and I didn’t think it would make a different in my life. It didn’t matter to me until I was sitting in a room full of doctors telling me that I was chronically ill and offering treatments that scared me to my core. I can remember my twelve year old self trembling, my parents reached for my hands, but instead, I stood up - full of fury and fear and confusion - and turned and left the room. And as soon as the door clicked close behind me, it was like it had never happened, like I could just run away where no one would find me and I would never have Crohn’s.
Years later, I sat in a hospital bed crying as my GI laid out new treatment plans that I disagreed with. Trembling again, this time all of 16, I cleared my throat and ordered him to leave my door. It took several times of me repeating myself before he obeyed, but I wanted him out. I wanted him to go away, my disease to go away, my life to be the way I wanted.
They say that when we are attacked by something - be it a bear or an illness - there’s a flight or fight response, to run like the wind or to stay and fight. I am not an escape artist much to my disappointment, and couldn’t flee the pain and disease raging inside of me, and had no choice but to stay and fight. The fighting is tiring and forced, it’s not a battle I signed up for, I was thrown into a war with a thousand people with swords running at me while I merely had a toothpick to disarm them with.
But living with IBD is as much about living as it is about fighting. A few days ago, I took my dog to the park to run around after dinner. There was no one around, just me and him, and he chased the ball around the field as the sun set and the sky grew grey and freckled with pink. I sat down and closed my eyes, wanting the world to stay exactly how it was, whole and mysterious and beautiful, as if I were exactly where I was supposed to be. A very dear friend recently said “you have a right to live a beautiful life.” It seemed so obvious, and yet, completely novel and revolutionary. It’s not only something that I should have, it’s my right to have a fully amazing and fulfilling and beautiful life. Yes, I may have Crohn’s and I may have an ostomy, but I’m damn well going to have a beautiful life to go with it.
And so I challenge you too to live a beautiful life. Stand and fight for your life, live it, love it, and it will be most beautiful one you could have ever imagined.