Not yet. But while we wait for a cure, it helps to gain some perspective, as our blogger describes in this story of Mad Libs, laughter, and celiac disease.
Celiac disease might seem like a roadblock. It doesn’t have to be. It’s more of a reroute.
Anya is 5. She is gluten-free and dairy-free, and like most children facing the “why can they have candy and I can’t” agony of early diagnosis, she had a hard time this Easter. “You can still be happy at Easter,” I told her, “Even without the candy.” She just wailed, “But hooooow?”
I was stumped. It isn’t fair to tell someone their feelings and what they should or should not think about a situation like this. I can’t tell her that wanting what she can’t have is an invalid feeling, even if that was my instinct. Even with resilient children suffering the loss of their favorite foods, there’s no moving on to opportunity without first having a mourning period.
Instead of shaking my head and trying to intellectualize a 5-year-old’s feelings to console her, we played. I wrote her “Celiac-Silly” Mad Libs. Remember Mad Libs? Those fill-in-the-blank stories that end up whacky and outrageous and typically also end in laughter?
The stories we created did more than reroute Anya. They rerouted my own brain, which I had lately felt was beginning to run in circles over my feelings of restriction and isolation—feelings becoming beliefs that I’m defective or without options. Writing those Mad Libs made me realize the worst disease isn’tceliac. The worst disease is self-pity.
Our “Celiac-Silly” Mad Libs gave me a new perspective. Sharing the humor —and my own experience—with Anya gave me an even better perspective. Laughing like a madwoman let me avoid focusing on the absence of what we were missing. I think it helped Anya too. I’m printing some of these Mad Libs for her parents to give to her.
So what do you do when you feel—or a child in your life feels—left out, alone, and buried in a sense of defectiveness? Three things, in order:
1. Affirm the feeling; don’t try to explain it away.
2. Let yourself, or the child, have a sense of loss and grief. Be angsty. Cry when you need to. Scream like Anya does.
3. Laugh. Get out of your head, get someone near who understands, and find the humor.
You have to exorcise the old, bad feelings before you can make room for the new. Let go of the old—it’s gone, in the past, full of gluten, and no longer part of your reality. It’s an opportunity to reroute rather than get road-blocked.
A good way to do this, turns out, is with Mad Libs.
C.J. Williams has made her own celiac diagnosis “a gymnast’s tumble,” as she says, “instead of a bone-breaking free-fall.” Williams writes a blog (TumblingGlutenFree.blogspot.com) to explore travel and celiac-safe restaurants, to discuss the joys of whole foods and whole life, and to promote the idea of building an identity beyond a disease.Originally posted April 2016