A year ago today, I didn’t really care about World IBD Day. It’s not that I didn’t know about it, and it’s not that I didn’t care about acknowledging and promoting it, it’s just that I was preoccupied with my bruised, battered body. A year ago today, I was in hospital recovering from my first surgery for ulcerative colitis, a surgery that did not go well. I was in pain, I was angry, I was sad, and I was rueful of my decision to have the operation.
One year and another, less complicated surgery later, I can partake in World IBD Day from the comfort of my own bathroom. I’m eating well, gaining weight, running occasionally, and looking for work. However, I still have the hallmark symptom of the disease – frequent shits. But if there’s one thing I know from my experience with UC since my diagnosis in 2008, it’s that inflammatory bowel diseases are about far more than shits.
My blog and my book are transcripts of the problems that an IBD can create outside of the bathroom: physical pain, worry, despair, anger. But there’s something I’ve never really touched on – death.
When I was diagnosed, most of the literature I could get my hands on about IBDs stated that they threatened quality of life, but not life itself. That’s largely, but not entirely, true.
Alexandria Davidson spent over 2000 days in hospital over the course of seven years. She endured 8 bowel resections, reducing her intestinal length to a mere 5 feet. Yet she managed to work at Camp Oasis, a camp for children afflicted with Crohn’s disease or ulcerative colitis. She created her own organization, Beautiful Beyond the Pain, to address the fact that IBDs can devour one’s insides without visibly marking his or her outward appearance. After a recent stay in hospice care, Alexandria died earlier this month, a result of complications from Crohn’s disease.
An IBD killed Alexandria Davidson. An IBD killed a beautiful young woman who in photograph after photograph displays none of the mutilation caused by her wretched, chronic, incurable disease. It’s difficult enough to accept a young person’s death, but even more so when that young person’s limited number of years on this earth were so filled with pain and hardship.
It’s time that IBDs are exposed for all that they are, and all that they do. The public at large needs no education on the ravenous nature of cancer or stroke or heart disease or Alzheimer’s, but IBDs are so often dismissed as tummy troubles or pooping issues or perhaps worst of all, as a synonym for IBS. They’re dismissed, that is, if they’re even recognized.
Writing my book and keeping my blog are the little ways I’ve tried to raise public consciousness about the seriousness of IBDs. I don’t think either has had widespread effect, but that’s okay. I’m still moderately proud of both. I’ve thought of more public, more radical ways to garner some attention for the IBD cause, but they’re all at the conceptual stage. Maybe after one more year I’ll be able to pull off something concrete, like my friend Victoria Marie, who will be lopping 8 inches off her lovely locks. Or another friend, Brooke Bogdan, who created the online magazine Companion, and is now working to move the publication into print.
This year, I’ll mark World IBD Day by not eating hospital food, by not lying in my bed all day, by not having an IV in my arm, and by not indulging myself in self-pity. I’m not sure exactly what I will do today, but I won’t feel sick or sad or sore when I do it. I’ll mark today with progress. I hope you can too, and I hope you’ll spare a thought for Alexandria Davidson and her family.
Image via Fabric Indulgence