The Woman I Have Become Because of My Crohn’s Disease
*written in 2015, pre-VNS
There is a picture painted in my mind of what my life should be — a parallel universe — and there’s no room in that painting for chronic illness. The painting is vibrant and detailed with Van Gogh’s heavy brush strokes; it’s thoughtful but spontaneous and energetic but mindful.
There’s no room in the painting for waking up in the morning still tired, or going for a walk with a painkiller in the back pocket of my denim shorts in case the spinal fusion in my lower back makes it too hard for me to walk back home. There’s no room for being unable to stand up straight, because the abdominal pain has my intestines in spasm, finding some relief only in curling up on my side and praying for a break to a God I don’t believe in.
I’ve spent the last several years hiding my illness. I didn’t want to be treated differently, nor did I want to receive sympathy. I know the “sympathy look” all too well, and while it’s well-intentioned, it makes my skin crawl. All of a sudden, I’m aware of every bone, vein and cell in my body, and how vastly different it operates in comparison to those around me. The look can create one of the worst feelings. It confirms I am indeed different and ache to know what normal feels like.
Last night as my husband, Sean, and I filled out our memory book, the page of the day asked us the question, “How do you want to be remembered?”
I don’t know if healthy people think about this question often, but I can tell you that those of us who live with illness can think of this question almost daily. I hid my illness for years because I didn’t want to be remembered as that sick girl. I want to be remembered as the girl who could make the saddest soul smile and someone who fought for the oppressed and the vulnerable. I want to be remembered for sweeping you off your feet with the way my eyes smile when my lips do. I want to be remembered as someone whose kindness was boundless and gave to others before myself. I want my memory to inspire others to also be a force to be reckoned with if someone attacks the character of those I love.
And now, because of the last eight months and a flare that came close to shutting my organs down and killing me, I want to be remembered as someone who could have very easily become engulfed in bitterness, but instead pulled herself up by her boot straps and went outside anyway.
I wonder who I would be without this disease, and I can’t fathom what that identity would look like. I’ve talked to some naturopaths and others in alternative medicine who say that disease is a result of not being spiritually awakened or spiritually fit, but I’m not sure I agree with that. I have found that in my disease — with my cane and sometimes in my wheelchair — I have been forced to see the world through new eyes.
My disease has slowed me down and made me really look at what’s true and beautiful. I notice the curves of muscle in a jogger’s legs and smile at how happy their body and soul must feel to be able to run. I notice how the sun feels against my face and how a breeze plays with each strand of my hair. I get floored to the point of joyous tears when in the presence of beautiful landscapes untouched by man. I don’t think I would notice these things, at my age, without this disease.
And while I hate the limitations of the body my self occupies, I’m so grateful at the same time. The woman I have become because of my limitations and disease is so much stronger than the woman I would have been otherwise.
There are moments when I struggle with this painting that is my life. My white cells don’t care to use colors or a variety of brush strokes that I wish they would; they only care to paint with just enough detail to remind me the painting I wish for is stowed away in someone’s attic underneath a sheet and covered in cobwebs. But the Muse and I are trucking along, grasping at straws of creative energy, because for the right-brained of the world, that’s the only source of true relief.
I love you, Parallel-Universe Kelly, but I’m so glad that I’m not you.
The Kelly I Became Instead
*originally published on The Mighty