Ulcerative Colitis: Ten Years & The Truth
Dear Sweet Reader,
Whether you’ve been making your way to this blog for years or it’s your first time here, it feels important to take a moment to introduce this next post and the person both in and behind it. I met my love, Chris Hoerauf, at Virginia Tech in 2010. Both music education majors facing uphill battles with our health, friendship came naturally in the kind of way only shared by seasoned hospital veterans. For as long as I’ve known him, he’s kept his truth close, and in most cases, entirely under lock and key… but today, he’s pulling the curtain back in the hopes that his story might reach someone who needs to hear it.
Chris, I love you, I admire you, and I am so deeply proud of the way you’ve chosen to share your truth with the world.
To everyone else, the words that you are about to read are his - not mine - because this story is his to tell. So without further ado, I’m going to step to the side and let him take it from here.
Thank you for stopping by. - Xo
It’s been a decade since I was first diagnosed with ulcerative colitis. 10 whole years. I’ve spent more than one-third of my life dealing with this disease and its aftermath. Which seems like a long time, but I can still remember details so vividly. I remember the day I first felt symptoms. I remember my first doctor’s appointment. I remember sitting in the specialist’s office when I was finally diagnosed. It’s been 10 years since those moments.
Only a few people know all of the details. My family, my college girlfriend, and my current girlfriend, Laura. That’s it. I think a lot of the secrecy came from my own embarrassment of the disease. I wasn’t embarrassed to have been diagnosed, but it never really feels like a comfortable topic to talk about symptoms that largely involve your bowel movements, including frequent stomach cramping and diarrhea.
Or how dehumanizing it feels to be in your twenties and struggling daily to be in control of basic bodily functions. My defense at the time was to think about it and talk about it as little as possible. I was distracting myself as much as I could, with school, with music, video games, whatever I could. My logic was that feeling shitty about it wasn’t going to help me heal, so why make time for that? And it was hard not to hear sympathy or sadness in other people's’ voices when my health came up. So, likewise, if their sympathy wasn’t going to help me heal, why let it ever come up in conversation? My emotional health felt fine at the time, so why take time to think or talk about something that only had the potential to bring that down? The longer this defense went on, the harder it felt it to break away from.
I’ve always wanted to be known for the things I can accomplish, not the things that hold me back, or my struggles in order to accomplish those things. That’s still true, but I’ve used that excuse to put up a shield well beyond that need. I have not had an employer to date that I’ve let on anymore that I had to, which has been next to nothing or completely nothing. I’ve had coworkers, friends, and roommates with whom I’ve never spoken a word of this.
And it’s really only been recently, with Laura, that I’ve grown comfortable speaking of details… of the medical specifics, of how the first time I cried was when I had to withdraw from school and it felt like the disease that I had more or less managed for years was finally winning, and how emotionally and mentally traumatizing it was to get through five surgeries - thinking I had put it behind me - only to get ripped right back in for three more after barely 10 months healthy. I got through the first series of surgeries by telling myself that no matter the setbacks and complications, I just had to get through this and then I could return to normalcy and not have to worry about it again. When that proved untrue I lost all hope, motivation, and perspective. That was my weakest point. I was utterly broken.
For years there were medical terms that I couldn’t bring myself to say; words I had never heard before being used to describe my condition were forever reminders of my worst times. Recalling any memory from those years would make me emotional to the point of tears. I figured that I made it through that period without thinking too much about how badly it sucked, so why would I want to think about it now? I was past it. I survived. I fucking beat death. Twice.
There are times when beating those odds has inspired me and driven me to accomplish things I would have never have otherwise achieved. But there are also times where it has absolutely paralyzed me, leaving me in a literal ball of trauma-induced anxiety, driving myself, Laura, and my relationship with Laura to the brink on multiple occasions.
I had eight surgeries in three years. I was hospitalized a number of times more than that. I missed an entire year of school. I missed my undergraduate graduation ceremony because I was in the hospital after an emergency surgery, and I missed my master’s graduation ceremony because I scheduled a surgery as soon as classes were done in hopes I could fit in another by the end of summer. On multiple occasions, I spent more than two weeks in the hospital, and half of my surgeries required a stint in the ICU. I spent over four months on IV nutrition, in too poor of a condition to eat or drink anything. After surgery number three I came out of the hospital weighing 130 pounds. For context, I’m 6’4”. My healthy weight the last few years hovers just north of 200, with a muscular build. My cheeks were hollow, my chest sunken, and every rib was prominently showing. I barely recognize myself in pictures from that time.
I almost died twice. I have acute memories of my worst times over that period. I remember waking up from surgery strapped to the bed because the operation was so severe they were concerned I would wake up in a drug-induced panic and start tearing any of the half a dozen tubes out of myself. I recall having a catheter shoved in me while still fully conscious while they were rushing me into emergency surgery. I remember waking up from another emergency surgery having no idea what had been happening to me or what they did, and for at least a day or two, being too scared to feel my abdomen for fear I had an ostomy bag again.
I struggle with so many lingering effects of that trauma today. I have difficulty when there are factors outside of my control; when I was battling UC I was constantly reminded that I had little control over my own body, and it was demoralizing. Dehumanizing. I struggle with sudden changes; I went from feeling great to almost dying in the course of a day back in 2013. It makes me anxious not to know all the little details of plans; with every medical and surgical setback, I always wanted to know what the next step was and what steps were still possible to return me to a “normal” quality of life. These results of trauma took years to materialize; my last surgery was in 2014 and it wasn’t until 2018 that my mental health began to suffer. But, thanks to multiple kinds of therapy, proper medication, a strengthening mindfulness and meditation practice, and unrelenting support from people I love, I am beginning to exorcise those demons.
I apologize to anyone whose offerings for help I pushed away over the last decade, or for those who feel like my lack of communication represented a lack of closeness in our relationship at the time. I refused to admit I was broken. And when you don’t believe you’re broken, you shun all opportunities to help yourself heal. In retrospect, I appreciate those who consistently offered help and who stuck around until I was willing to accept it more than I can speak words to. A book I’m reading now about trauma, The Body Keeps the Score, puts it, “people can never get better without knowing what they know and feeling what they feel.” It’s only recently that I’ve begun to acknowledge these feelings and the trauma still stored in these memories, which has allowed me to sit with them, explore them, and heal from them.
I used to believe that everything happens for a reason, but I’ve come to realize this is an incredibly privileged view of trauma. Others have faced so much worse than I have - things that can’t be explained. Traumas from which there is no healing. I couldn’t begin to think I can understand others’ tragedy, or explain it away with “everything happens for a reason.” Suffering is often senseless. And sometimes it is too much to recover from. But, I do believe that there are often opportunities for growth in suffering, and sometimes doors open that never would have otherwise.
Early in our relationship, Laura shared a poem by Og Mandino that resonated deep within me. It puts words to this idea better than I ever could have:
“Stars may be seen from the bottom of a deep well,
When they cannot be discerned from the mountain top.
So you will learn things in adversity
That you would never have discovered without trouble.
There is always a seed of good.
Find it and prosper.”
Without missing a year of school I never would have gotten the chance to study under Dr. Annie Stevens, the new percussion professor at Virginia Tech. Without her, I would not have gone to the University of Tennessee for grad school, and without my professor at UT’s connections I wouldn’t have had an internship with Yamaha, and without my Yamaha internship, I would be on an entirely different career path with an entirely different life. And I can’t imagine that. I may have gone through hell to get here, but I can’t imagine being happier on any path beside the one that I’m on now.
It has taken 10 years to get here. A decade of mitigating, managing, and healing from physical and mental health problems. A decade of learning to be grateful for what I have without feeling remorseful about what I don’t. A decade of realizing that we can’t always write the blueprints ourselves but that we still have to make the most of the materials given to us. A decade of finding the seed of good in adversity.
I will always be grateful for those that have stood by me through this journey. For my family and friends who supported me in any way I would let them, which was often less than they were willing to. For my parents, who, additionally, supported my medical journey financially (and for ObamaCare that let me remain on my parent’s insurance through everything). For my Mom, who would help me change the bandages on my stomach every few days for a period of nearly five months while I was recovering at home.
For Laurence and Brian, who came to visit me several times during a 15-day stint in the trauma ward at Johns Hopkins, just to watch The Office on my laptop as they pulled up chairs on either side of my hospital bed.
For Tyler, who, at the end of our senior year, drove me to the ER at 4 am, called my parents to update them, and then stuck with me for as long as he could until he had to leave for a final exam that morning. For Dakota, who was out of town but drove several hours back to Blacksburg in the pre-dawn hours of the morning once he heard from Tyler that I was in the ER. For the numerous professors who remained flexible as I was forced to miss days of school, final exams, and had countless appointments conflict with class. For all the friends and classmates who showed support for me over the years, particularly as I stood through our smaller Department of Music graduation ceremony less than 48 hours removed from the hospital, and less than a week removed from almost dying (again).
For all the nurses and hospital staff I met over the years, and for the surgeon who performed seven out of eight surgeries, Dr. Jonathan Efron. It kind of sucked that I saw you so often that you’d ask how my family was doing as if we were old friends catching up, but even when you were visibly stumped, you never wavered in your determination to fix me as well as you could. I am not only alive because of modern medicine, but I am living a better quality of life than I could have ever imagined. I am missing my entire large intestine and a solid foot of my small intestine. Really. All things considered, there isn’t too much to complain about in my current quality of life. I am grateful every day simply to be alive.
And I am grateful for Laura. When we were simply just classmates nine years ago, your own determination, fierceness, and drive inspired me. The more I grew to know you over the years, the more I was inspired - by your own overcoming of adversity time and time again, and the fiery compassion it lit inside you that you seemed destined to share with the world.
I am endlessly grateful for what our relationship has become over the last two years. Neither of us saw this coming, but now I can’t imagine ever wanting anything else. You’ve been with me through my worst moments over the past year, and even when it was too much for both of us to handle, you helped me to find the support and help that I needed to heal. I had been so stubborn about accepting help for so long. But seeing what my own embodiment of trauma was doing to you, and to our relationship, changed that. We were struggling, and I couldn’t risk losing you. When I wasn’t able to prioritize myself, I was able to prioritize us. Thank you.
I have seen stars from the bottom of a deep well.
And I am prospering.