My lucky parents were blessed with a child who not only won the IBD lottery, but long before that diagnosis, had a severe reaction from eating a nut at age two. Growing up with a life-threatening nut allergy, I became accustomed to standing out from my friends long before my IBD diagnosis – but that is a story for another time. The point here is, I mastered the game of careful avoidance from a young age. Although I was not sensitive to the smell of nuts, I would take care not to even hang out in the same room as any. I was taught well that they were the enemy, and the farther away I stayed, the safer I felt.
So, you can imagine my surprise (read: horror) when, on my very first college campus tour, our guide announced that one of the distinguishing features of the campus was a large courtyard brimming with pecan shells. I stuck to the sidewalk when the group walked through the (admittedly beautiful) pit of possible death, trying hard not to let this unexpected development spoil a day that had been wonderful up until that moment.
I came home disappointed but determined. I returned for a second campus visit prepared. After two rounds of allergen testing (including literally walking into my allergist’s office with a bag of pecans and asking that we rub them all over my feet), we confirmed that although I had not outgrown my oral allergy to pecans, I did not have a skin allergy. So, one year later, I returned to that pecan court – and despite the March cold – donned flip flops and stomped all around that thing. My heart was racing, but I had to prove to myself that I could do it.
But I did it. And nothing happened.
Three years later, I walk through that pecan court at least once a day. And sometimes, I feel a little surge of victory. I can do what I once thought I couldn’t do. Other times, though, I feel a pecan shell slip beneath the sole of my shoe and rub up against my foot – and despite the overwhelming evidence that I won’t react – I still look for a hive to pop up. I am safe – but I can never erase that twinge of fear and doubt.
IBD is similar in some ways.
I have been in remission for over two years. But in that moment I see a red-tinge on the toilet paper, my mind inevitably begins to race off in directions I know it shouldn’t go. I’ll think, ‘This is it. This is the first drop, and tomorrow there will be two drops, and then in a week there will be red all over the bowl, and then I will be on Prednisone, and I should go freak out now.’ I always manage to regain my common sense by the time I finally flush that terrible industrial grade skin-irritating toilet paper away, but the panic never fails to set in for just a moment there. Even now.
I know remission is not a cure, and thus I am always ready to lose it. When I feel an abdominal cramp come on, I know I should go straight to the conclusion that it’s just my menstrual cycle. That’s the most likely conclusion, and for three years, that has been what it always turns out to be – but my mind never goes there first, even now. Perhaps it’s a coping mechanism for when the day does come that I slip out of my remission – as if I think I’ll find comfort in saying, ‘Well, at least I knew this was coming.’
Living with a chronic illness, I am always walking through a pit of danger. Right now, I’m protected, my treatment is doing its job, but I know my armor is unlikely to last me forever. My 6mp probably won’t hold off my immune system until I’m old and gray, but in the absence of a cure, my disease isn’t going anywhere. Even my medications could hurt me one day.
But, just like with my nut allergy, there are things I can do to protect myself. I can take my meds on schedule. I can check in with my doctor every three months. I can be alert to my body and bowel movements so that I catch bumps in the road before they progress to flares. I can avoid behaviors and foods that might trigger problems, and do my best to keep my body healthy and rested.
It’s important to know what I can’t do, but it’s equally important to know what I can do. I can walk through that pecan court. And, with a touch of luck and a lot of cooperation as an engaged patient, I can be an IBDer who hangs on to that remission for what I hope will be a good long time. It’s important to know where I stand, but even more important to walk with confidence through wherever I am – whether it’s the sidewalk or a courtyard of pecans, remission or a flare.
IBD was certainly unexpected and (if I let myself become preoccupied with all the what-if’s of my disease) can be unnerving, but I am walking, kicking, and dancing through it.