By Jacqueline Raposo -
When I was 12 years old, I woke up and couldn’t walk. After several months of misdiagnoses, including the advice from my pediatrician that my parents take me to
a psychologist, I was diagnosed with Lyme disease. A common and serious disease
for many in the northeast (and other parts of the country), it’s still not a well-known immune illness in the greater community. With over 300 documented symptoms, it’s
a tricky one and easily misdiagnosed (as Chrone’s, IBS, several forms of arthritis, tendonitis, the list goes on).
It wasn’t until my mother took me to a nutritionist that my body was strong enough
to deal with the massive amounts of antibiotics I needed and my body began to heal.
I was taken off of gluten, beef, eggs, soy, dairy, sugar, citrus… a very long list.
In the 19 years since, I’ve been treated with heavy doses of IV antibiotics twice more. Each time the disease has left me with immune and digestive issues and arthritic conditions in my knees, hips and spine.
Generally, by the time you are Real, most of your hair has been loved off,
and your eyes drop out and you get loose in the joints and very shabby.
But these things don’t matter at all, because once you are Real you can’t be ugly,
except to people who don’t understand.
I’m now 31. I dealt with a “gluten-free diet” long before the title was understood amongst the masses and long before it was treated with any sensitivity. There were few alternatives to wheat. There were few alternatives to dairy (which plagues me most prevalently). There was little community support. To this day, Lyme disease as
a chronic condition is much debated in the medical society and not well known amongst those who have more visible titles with which to diagnose their illnesses.
The Rabbit sighed. He thought it would be a long time before this magic
called Real happened to him. He longed to become Real, to know what it felt like;
and yet the idea of growing shabby and losing his eyes and whiskers was rather
sad. He wished that he could become it without these uncomfortable
things happening to him.
As I’ve grown as a writer and chef, my work has naturally gravitated towards the community of dietary restrictions. While I haven’t proclaimed myself to be a spokesperson for those with gluten and dairy intolerance, much of what I do in the kitchen caters to cooking and baking without certain ingredients. And my focus on
The Dusty Baker and as a staff member of Easy Eats reflects my lifestyle. I love the gluten-free community. And while I’m not generally vocal about my dietary
problems – I would rather just say “hold the bread” – I am so happy that the
resources available to us are much more abundant than they were almost 20 years ago.
I recently took a trip to Napa and Sonoma, a much-needed respite from cooking in
a kitchen as a private chef during the busy summer season of East Hampton. While most of my indulgence was on sampling the lush wines of the region, I found myself
in a microbrewery highly recommended by the chef friend I was traveling with.
“Hurrah!” thought the little Rabbit. “To-morrow we shall go to the seaside!”
For the boy had often talked of the seaside, and he wanted very much to see
the big waves coming in, and the tiny crabs, and the sand castles.
I’m very sensitive to gluten. If I eat it regularly it wears away my digestive system to
the point that I can eat very little and my Lyme strains escalate with a dangerous fury. But, if I’m very careful and only “cheat” several times a year, I can indulge in precious, much-appreciated moments.
So I tweeted a picture of the 20-sampler beer lineup my friend ordered that I sipped and commented on and thoroughly enjoyed. A tweet in reply stopped me in my track: “Not to be a pill, but telling people you ingest gluten when you feel like it makes it hard for those of us who can’t.”
My heart sank.
An exchange ensued, to the point where I had explained my particular health struggles and the tweeter had apologized. But it still stung. After 20 years of dealing with digestive issues, there are still new hurdles that crop up. Should I feel responsibility for how my relationship with gluten makes others feel? I honestly don’t think so.
What I’ve learned from growing up with an awareness of how strongly food affects our health is – “to each her own”. We all need to moderate, choose responsibly, listen to our bodies, indulge/restrict as necessary and not go to any extreme. I am not a spokesperson, role-model or guide for what is best for you. I can give recipe advice and tell you the struggles I’ve been through and conquered. But there is no “one size fits all” way of eating.
As part of the “older generation” of gluten-free eaters, I do see some danger in the trend that is the “gluten-free diet.” I live in New York City, where any fad is easily bought and diners are more than ready to make their preferences vocal. I’m also a chef, and the difference between medical issues and food preferences are vast and specific. The more people jump on the gluten-free bandwagon (and the more vocal and difficult they are to the non-gluten-free eating community), the harder it is for those of us with real health issues. I have even stopped specifying “I can’t eat gluten” at restaurants because I don’t want to detract from the seriousness of those who will get very sick if they have gluten. I feel responsible for articulating that “if I eat something with dairy in it I will puke all over your restaurant and be sick for days.” And a similar protectiveness for those with gluten problems. So I’ll suck up any slight danger of ingesting gluten (despite my being experienced at menu reading and a very good converser with chefs and waiters) if that makes it easier for those with dangerous allergies.
As a community, we need to be respectful and loving of our individual experiences. I don’t expect someone with celiac disease to understand what my struggle with Lyme disease has been. I try to be patient when loved ones come to me with bright eyes and “I’m going gluten free” or “I’m not going to eat dairy” and expect me to respond enthusiastically. Because my general response is,”Why?” Understanding the reasons for a particular lifestyle are key. Are you cutting out gluten or dairy but eating sugar, alcohol, caffeine and saturated fats with abundance? Have you spoken with a doctor about digestive problems?
Like we promote here at Easy Eats, I celebrate food and my relationship with it. We don’t judge or condemn each other for choices. We support and love and converse and grow together.
He even began to lose his shape, and he scarcely looked like a rabbit any more,
except to the Boy. To him he was always beautiful, and that was all that the little
Rabbit cared about. He didn’t mind how he looked to other people, because the nursery magic had made him Real, and when you are Real shabbiness doesn’t matter.
I am always here. As an ear, a compatriot, a resource to guide others towards those who are experts in their field. But please don’t make me feel bad for the few times a year when I eat some bread or drink some beer. My sleepy, cranky body will tell me that I’ve overindulged. And as there have been times in my life when I’ve been a skinny waif who (maybe) got 500 calories a day because of how bad my digestive problems are, I celebrate the vibrant, abundant, delicious world there is out there… even if I only get it in tiny bites.
That night he was almost too happy to sleep, and so much love stirred
in his little sawdust heart that it almost burst. And into his boot-button eyes,
that had long ago lost their polish, there came a look of wisdom and beauty.
“Run and play, little Rabbit!” she said.
Have your own Velveteen story? Have a particularly positive story about compassion for your diet? We’d love to hear it.
Excerpts quoted from the classic children’s book, The Velveteen Rabbit by Margery Williams.
Jacqueline Raposo is an Editorial Assistant to Silvana Nardone and the Easy Eats blog
editor. She has weekly chef interview column on Serious Eats NY and blogs on
alternative baking at The Dusty Baker. Come say hi on Facebook or chirp away to her on Twitter.