10 years ago this past summer, I was a shy, rather-little boy sitting in a post-op room in the hospital hearing the words, “You have Crohn’s disease.” I had no idea what Crohn’s was at that time, why I had it, or what it meant for my future. I won’t go into my diagnosis and battle story, which we hear versions of so often. Instead, I want to focus on what this disease has done to my life that I’m grateful for. For the first four years after my diagnosis, I didn’t want anyone to know outside my family. I was embarrassed and just wanted to be “normal”, but who could blame me? I still have yet to really figure out what would be considered “normal”, so if anyone knows please let me in on the secret.

After those four long years of suffering in silence, I realized I could continue sitting around waiting for change to come and for things to get better, or I could get involved and help change things for the better myself. 

Much about Thanksgiving is the same year to year. People come together with friends and family and community, often enjoying a large meal together, and spending the day doing something meaningful—whether doing community service; watching football; or sitting around talking, telling stories, and recovering from the large meal. But while many things about this day of togetherness and gratitude remain constant each year, our personal roles may shift. Sometimes we host the meal at our home. We are the “leaders” for the day, developing the menu, doing most of the cooking, deciding when the group will eat, assigning tasks in the kitchen, and choosing which football game will be on. Other times, we are a guest in someone’s home, often traveling some distance, we are told which side dish to bring, when to arrive, and which activities are planned for the day. Sometimes we are grateful to play a supporting role in the production, and other times it can be hard to sit back and watch events unfold differently than they would if we were in charge. Maybe the mashed potatoes don’t taste just like our Thanksgiving memories, maybe our family always took a walk after eating and we’re antsy to do the same, and maybe the wrong football game is on TV (or we just can’t stand watching football at all).  Or maybe it’s just perfect—just the break we needed from running the show – and we bask in the glow of learning new ways of doing things and watching others shine.

I am just over three months into my first year of medical school. I love it, really, I do. Every day is different and a new kind of challenge, causing me to both embrace and restrict change as I become and remember who I am.

Of course, one contributing factor to who I am is my ulcerative colitis. It rarely feels like a Disease, with a capital D. It is less of a dinosaur than a dandelion these days. Usually barely noticeable but ubiquitous in my fields of thought. But then, the slightest trigger of an associated idea or memory creates a flurry of emotion I can’t help but acknowledge.

Engagement is one of those things that just seems to come naturally to some people. If you believe in something and are excited about it, how can you not share your enthusiasm with others? That’s all engagement is really; sharing stories, passions and successes, and working together toward a mission.

My name is Cori and this is my story of working with ImproveCareNow (ICN) – engaging many different people in an effort to improve care & health for kids with IBD.

Wesley at five years old

Wesley was diagnosed with severe Crohn's disease last October during his fifth grade year; just after his 11th birthday. Though he has always been a happy child, Wesley began showing symptoms of this disease at least two years prior to diagnosis. He struggled with various symptoms, often having to stay home and cancel plans. He was unable to play sports with his friends, and often left places to rush home because he was sick. He was absolutely miserable. 

We speed down the pavement towards Grand Canyon National Park. In a few hours this road will be jammed for miles, but right now it’s empty. The trees stand motionless in our headlights and the air rushes into the car through the open windows and back out into the night. There is a young buck on the side of the road, and his presence only accentuates the stillness of the scenery. We pass the empty ranger station, the closed visitor center, and continue driving to the rim of the canyon. Clouds cover the stars like a nightshade, and only the moon penetrates the veil—it is dark.

It’s 3:00am, and we’re at a gas station ninety miles outside of the park. We’ve been up for twenty-two hours, and been on the road for sixteen of them. I pull out of the station and on to the open road. We roll the windows down and open the sunroof. The air hits my arms and my body shivers at the cold. I stick my left hand out the window and open my palm to the night—it keeps me awake.

The first three hours of the drive are easy. Daniel takes us out of government land, and we watch the sun set behind clouds that drop streaks of rain over the prairie. Although we had already been in the car for nearly ten hours before leaving the dunes, the adrenaline keeps us comfortable. I lean my seat back and put my feet on the dash until it is time to switch. My right hand grips the steering wheel and I rest my foot just above the brake in case my eighty mile-per-hour pace becomes too fast.