The below speech was delivered at the Halifax Heel n' Wheel in 2010. I'm thrilled that we've accomplished our goal of our book (mentioned below) and surviving and thriving with IBD.
Everybody has a story to tell.
But sometimes, we wish we were telling another story. We wish we weren’t telling one of intestines and medicines and IVs and toilets - but one of a normal childhood and a normal life. We are each both the narrator and author of our own lives, the only catch is sometimes we don’t know the whole chapter until it’s happening.
If we tell certain stories enough, they begin a life of their own, you perfect the way you tell it, what words you use, where you pause. For me, one of those stories is when I first started getting sick. I was 11 and finishing the sixth grade, the valedictorian of my class and so excited for junior high. I was also experiencing white hot pain searing across my pre-teen abdomen - that succession of words proves how many times I’ve told his story - and within a few months I was 12 and had been diagnosed with Crohn’s. My family and I were oblivious to the diagnosis, a so-what-happens-how? attitude, I was the only person in my entire extended family to receive the diagnosis. Too soon did we figure out that we were in way over our heads, my Crohn’s Disease was not ever going away and there were no easy answers to decide upon. And while I had my parents and siblings, the story of those first few months stayed bottled inside me, there was no outside ‘safe’ person to unload upon, no tolerance for emotional breakdowns in public. So I kept my lips shut and did not share what I then considered more of an obituary than a story.
There were a few attempts to ‘match’ me with another youth who had IBD to ‘show me the ropes’ - but I was bitter and angry and did not want to be soothed into thinking that everything would be just peachy, because I was different and I was sick and that was not okay. The only actions I took daily to mirror my constant thought about my IBD was taking pills when my parents forced me and camping out in the bathroom.
I don’t remember exactly how we began to get involved, but then the next thing I knew, my parents had taken me to a CCFC event. I was at first shy and afraid - who were these people that I had some unspoken bond with? Where did I fit in? It wasn’t until I saw how they looked and acted and how they treated each other for me to realize that I would be ‘normal’ amongst this group and perhaps they did want to hear my story. And they did.
Being involved locally gave me a tremendous new voice and a purpose to share my story. I not only wanted to share my story, I wanted to change something. And while it seems like a huge leap from my deep denial, I felt my place in the CCFC community. When the opportunity came along to apply for the Youth Advisory Council (YAC), I jumped at the chance and applied as quickly as I could. Within a few months, a happy voice on the other end of the phone told me I was in.
The first time the dozen of us from around the country phoned into the conference call, my heart was beating crazily. I was the youngest, in some cases by about eight years, I sat on my bed listening to everyone exchange their quick stories, where they were from and what their diagnosis was. A couple of months later we all met at Congress in Toronto and all we wanted to do was exchange stories. I did not know any other youth who had IBD - and these kids were funny and smart and compassionate and empowered. It was exhilarating. They were university students, boyfriends and girlfriends, workers, athletes - they were amazing youth who had IBD and not the other way around. Their stories fueled me, and continue to this day, to inspire me daily to live my best life.
This year is my third year on the YAC and I find myself as the current chair of the council. In the short time that we’ve existed, we have created a website, business cards, tipsheets, a brochure, etc. - and soon to be a book where we can collect all of our stories. The book, ‘Tales from the Throne’, will collect submissions which you can email to firstname.lastname@example.org and book cover submissions that you can send to the same place by July 16th. Yes, this is a shameless plug, but each one of us has the opportunity to share our stories, even just writing it down is a release of emotion and thought.
And now that I’ve shared one of my stories - you can ask yourself, what is the story you want to share? What is the story you want to write, and how will you get there?