Fifteen years ago today, at just seventeen, I was diagnosed with Inflammatory Bowel Disease.
It is hard to believe, at thirty-two now, that I have spent almost half of my life enduring the ups and downs of this horrid illness. The symptoms I experience now are merely part of my every day life. I have accepted them into my daily routine. But I cannot imagine how I coped as a seventeen year old How the hell did I even become a successful adult, I often wonder?
I have memories of being sick, of course. They are memories of days when I lived in diapers and survived off steroids. I can remember these times, but it is the small moments; the in between and random selection of memory that fills me with a paradox of sadness and joy. The joy surmounts because I’ve come So. Fucking. Far. No matter how much distance fills the space between me now and me then, I cannot help but feel emotion; an emotion I suppose no one else can relate to who has never been as low as I was during the first year with Crohn’s.
I remember dropping to 95 pounds. I can still see myself staring at my reflection in my parent’s hallway mirror, wearing a pair of shorts that I would never be able to fit myself into again and a Cliff Lee T Shirt. I still have that t shirt. It doesn’t fit in the same way now, but I still wear it. I went downstairs and cried into my dads shoulders and he told me for the first of many times that Crohn’s would not define my life.
My sister would take me for car rides. We would go and see my brothers softball team play, and this was the one instance every month where I would socialize. Unbeknownst to every one of my brother and my friends, my bony body was able to hide that I was wearing a diaper underneath my clothes, and that diaper was the only thing allowing me to leave the house. In retrospect, maybe they knew but didn’t say anything. I lived for those spring and summer nights watching my brother play softball.
I remember when Comcast came to install cable because my whole life we didn’t have cable but my mom (hi mom!) decided we could have cable because I was sick and I had nothing else to keep my time occupied. I remember sitting on the love seat of my parents sofa and watching the techinican install our cable. I remember my mom went to Dunkin Donuts and got me a bagel. I ate two bites before I felt sick.
I remember my high school friends coming to visit; not quite understanding why I couldn’t come to school but understanding that I was sick. Jess brought her dog; Anne brought food. I was glad they came, and wanted them to leave all at the same time.
I remember going to my high school graduation after my mom fed me 5 MG of percoset, the only time I would ever take a pain pill in the history of my struggle with Crohn’s. My sister and Ryan gave me a Tiffany bracelet with an American flag. I remember Mrs. Johnson giving me the tightest hug when she saw me at graduation, and for a moment, this teacher whom I didn’t even realized knew who I was, she understood how much it meant for me to be walking at graduation. We went out to eat as a family together afterwards and I remember bursting into tears because I was on steroids and quite frankly, out of my damn mind.
I remember my college roommates, each one of them with the responsibility of driving me to the hospital after a bowel obstruction at some point in our college journey. Jill went to the cafeteria but was afraid to eat hospital pizza in front of me. Natalie demanded the nurses give me pain meds, and Claire took me for a walk at the UMMC and we made small talk with the orderlies. My best friends; famished, delirious and missing valuable studying for finals; all they could think about was me. Until recently I had written the narrative in my head that Natalie had failed her final because of me. She was sure to correct me. She didn’t fail her final, but she barely passed. How can I not feel like the luckiest person in the world for having these people in my life?
I remember the posts of this blog I shared with boyfriends who I decided were worthy of knowing “the truth”. I still remember the first post I shared with Jamie. I sent him an email after a date of ours should have turned romantic that included a discription of my ostomy. He texted me the next day, all day, like nothing was wrong and I feared that he hadn’t yet read his email. When I asked him if he did he said “of course, it was the first thing I read this morning”.
I’ve been blessed, throughout this curse. My struggle will never, ever end, no matter how magically I paint my life to be on the canvas that is this blog.
But, I’m just like any other 32 year old with hardships. My struggles just happen to be in the form of a missing colon and tiny hole at the bottom of my abdomen that has given me life.
Here’s to a happy, healthy, and surgery-free 2017. Cheers!