Gluten-Free Treatment Worse Than the Disease? Celiac Chat on Life
I didn’t think Celiac Disease was a disability when I lived as a freelancer, consulting with families and individuals on nutrition. My day necessarily dealt with my, and others’, meals and thoughts about food. I didn't want to think of it as a disability when I was first diagnosed either, because too much grief lay in that; and after all, eating gluten free is a straightforward prescription. Prior to my freelancing, I was a student, working part-time, in a gluten-free bubble, traveling carefully or never at all.
Isn’t it easy as anything to swim in and out of all the gluten-free gregariousness online, and live in a bubble of FOOD, SAFE FOOD, HOW DO YOU MAKE FOOD
...and yet, does the ordinary individual with celiac have the bubble of time to live like that -- like people blog and pin and tweet and post?
BLOODY NO. No.
I recently finished my graduate studies in philosophy, put my nutrition business on stand-by (I’ve kept clients but am not soliciting more), and transitioned into a full-FULL-time job in human rights advocacy.
A friend of mine in Cambridge also has celiac. He hasn’t had the challenges with recurring symptoms I’ve had, but he has realized, bloody heck, how do I take care of myself, avoid cross-contact, and do my job and life?
Because living with celiac, one thinks about food quite a lot. All the time.
“I have a routine,” he told me over brunch a week or so ago, “I eat the same thing for breakfast, pack a gluten-free sandwich, and have the same dinner all week long. I don’t eat out now. It helps mostly with the not-having-to-think-about-food-all-the-time.”
Celiac Disease isn’t a death sentence.
But it is a disability.
It can put me, personally, in the hospital if I don’t spend additional time planning.
This is serious stuff, mates. I mean, humans have to eat.
And we’re meant to live fully.
But life -- as Thoreau says -- The cost of a thing is the amount of what I call life which is required to be exchanged for it,
Celiac Disease costs a lot, not just the coin that goes towards often higher priced GF novelty foods.
|Pikachu in Times Square, however, is fun|
And it’s no fun at all to spend the invaluable currency of my time and love on having a head full of food, especially when even with a head-full, my stomach isn’t always as full as I’d like if I’m traveling or choosing to write, or chatter in Welsh, or speak at a community event to raise awareness for how we end the specific acts of violence perpetrated in our cities, even tacitly approved by our societies. Not to mention, food is supposed to be in your stomach, not your head.
But I don’t love food; I love life; and I love friends. I enjoy food and value food. Yet that which I think on most is what I will end up knowing most.
And I resent this disability, this care.
Let there be no misunderstanding: I want to care -- care, not kowtow.
I don’t find in blogs or online much resource for eating well, safely, but not being runaround, rigamaroled, at-the-beck-and-call of my food needs. Heaps of resources exist for recipes, for new product reviews, for restaurants. But the only Instagram account I know which demonstrates life, is Ventura-based celiac-x-vida
Yes, I can stuff cereal bars in my back pocket. That isn’t nourishing though.
Yes, I can risk my longterm health, and short-term health, eat out, ditch the time to research ...That isn’t care or sane though.
What then is the solution?
I have opportunities I’d never have hoped for, because I was diagnosed, and know my prescription.
But gluten-free is not free if it doesn't free me to live thoughtless of it. The point of a treatment is to allow an individual to live outside what would be the strictures of their disorder's disabling -- yet gluten-free eating for celiacs, and the attitude I observe in the online community, doesn't let me out of the strictures. It keeps me circling in the treatment.
Will we ever have -- or choose --options? I want to give my current clients more options, not one option in more and more variations. I want not just diagnosis, but treatment; even cure. I want recovery. I want freedom from food -- not to have a gluten-free life, but a life free from gluten-fear & food preoccupation.
...and YES FOOD IS GOOD BUT GOOD GRIEF.
So attitude is inevitably a key aspect of freedom. But my best attitude, and my best efforts will not remove my additional needs.
Celiac Disease is a disorder, not an identity; it is a disease. Lives are not healthy lives if lived defined and delineated by the requirements of something that is a lack of health.
Treatment for celiac should mean an individual has a life affected by celiac, not a celiac life.
Shall we talk options for being more free from food preoccupation, not just preoccupied with the next gluten free find?
Note: ...not that it hurts to skip like a spriggan when brunch is safe, or one can eat a donut for a change. Joy is joy.