This is a very personal essay. It's a little out of the range of what I typically write about here, but it is something important going on in my life right now, so I thought I'd share all the same.
It starts innocently enough. It is early May of 2009. I am walking into the Sony Pictures parking structure, drunk on victory. I’ve nailed an agreement to make an ARG for the film 2012, sure to be a boost to my career and a much-needed infusion into my bank account; now I am on my way to the airport to fly home.
As I walk to my rental car, a hard lump lodges in my throat. I cannot breathe. I feel like I am four years old, and about to break into sobs. I am shaking. I wonder what on earth could provoke such misplaced emotion; I just won a project, after all. I have nothing to be upset about; quite the opposite. My future is secure for another several months. But maybe, I think, it’s homesickness, or relief, maybe lack of sleep and excess of caffeine. When I arrive home from the airport many hours later, I put it out of my mind.
I should make it perfectly clear up front that there is nothing seriously wrong with me. I don’t have cancer, I don’t have lupus, I don’t have AIDS. I’m certainly not going to die. It’s just an inconvenience, really; a pesky inability of my body to tolerate a common protein. That’s all. It’s easy enough to avoid.
There’s not that much to be upset about. Not really.
The next clue is in August. I am on the plane home from Walt Disney World after a too-brief vacation with my family. I put my elbows on the tray table and massage my scalp to try to assuage a headache. When I open my eyes, I notice that several dozen of my hairs litter the table. I am a bit taken aback, but not really worried, not yet. Stress, I think. Maybe hormones. Nothing to worry about.
Weeks and months pass. The stakes begin to mount, pieces of the puzzle piling up thick and fast, but never clear enough to make out the picture. Each time I shower, I comb out a snarl of hair the size of the palm of my hand; my hair grows noticeably thinner. I have anxiety attacks that leave me unable to concentrate or even breathe for two, three, five days at a time. My menses come unpredictably and far more often than they should, in cycles as much as two weeks shorter than they once were. I am cold, so cold; on a rainy day, I turn to stone entirely.
I begin to suspect a thyroid problem. I speak to my doctor, who plainly thinks I am making something of nothing. He humors me and gives me a referral to an endocrinologist. The endocrinologist is a kind older man — highly regarded in his field. So highly regarded, in fact, that it is a four-month wait just to get an appointment. I spend each day of those four months looking forward to the visit when I will begin to unravel what is wrong, so that I can begin to feel better.
At last, my appointment day arrives. The doctor orders blood tests and tells me to return in another four months. Those additional months later, he kindly tells me that my thyroid bloodwork is normal. He declares that I have been suffering from a thyroid virus, and I am now recovered. I screw up my courage and try to impress upon him the severity of my ongoing battle with anxiety. He tells me, kindly, that I am suffering from stress, and I should have my boyfriend take me out to dinner. I stare and stammer that I am married. He shrugs and has no further advice to offer.
I sit in my car in the parking lot after, filled with despair. I have wasted eight months. Eight months of growing more tired, more anxious, eight months of my hair falling out and out, clogging drains and vacuum cleaners, and I am no closer to feeling like myself again. Perhaps he is right, and it is stress or my imagination, I think. Perhaps I should give up and try to make the best of it.
Long Island has a blistering summer, with unrelenting heat well into the 80s and even the 90s. I wear a sweatshirt at all times. I keep the thermostat at 78, and sometimes turn it up to 80 when nobody else in the family is home to complain, because I am so very cold. I dread the onset of winter the way a prisoner sentenced to hang dreads the dawn.
Finally, in October, at the urging of several close friends, I see a second specialist. His brow furrows as I describe symptoms and family history. He takes several vials of blood from me. He is testing to see if I have thyroid disease, if I have Cushing’s, if I have PCOS.
He calls me with good news a week later: My bloodwork came back, and it is perfect. There is nothing wrong with me. The knot in my throat returns; if there is nothing wrong, there is nothing that can be fixed. This is my new normal: The anxiety, the hair loss, all of it.
—But. I am low in Vitamin D, he says; very low, in fact. He is putting me on a prescription Vitamin D supplement. And I was low in vitamin B-12 (but had been all along). He hesitates, and then speaks again, almost an afterthought. “You should try a gluten-free diet,” he says. “Your bloodwork is negative for celiac… but sometimes the bloodwork is wrong, and for some of my patients, it has really helped.”
Gluten-free. I had thought it was the new fad diet. The latest nutritional nemesis, after trans-fats and carbs, which in turn followed saturated fats and mere sugars and starches. The latest spotlight ingredient in the endless parade of villainous foods.
Gluten. So common, so harmless. A complex, sticky protein found in wheat, barley, rye. That couldn’t be it. That certainly couldn’t be my problem.
Gluten intolerance. A made-up ailment for people searching for something to complain about.
But I think about the winter coming, and I grasp at the straw. What could it hurt to try, just for a few days? I stock up on rice and sweet potatoes to play at gluten-free.
After a week, on Halloween, I am seduced by forbidden candies: 100 Grand Bars, Nestle Crunch, Twizzlers. For the next three days, I suffer for it, with the return of a stomach ache I’d never before realized I’d always had until those few remarkable days that it was gone.
Food is a curious thing. Both a necessity and a pleasure; a solitary luxury and a method for communal bonding. Eating now, even with family, traps me between my need to protect myself from food that will make me sick, and my desire to blend in, to not cause trouble, to simply enjoy the things I always have before. I don’t want to be the one who must be accommodated, the one who spoils the fun, the one left out. Restaurants are particularly difficult.
And yet I am saying goodbye, one tiny realization at a time, to all of the things I once could eat and no longer can, for now and always.
Bread, of course; cereal, pasta. Cookies and pie. Pizza.
The big things I accept easily. If this is what it takes to feel well, so be it. But the revelations keep washing in, driftwood from an unfaltering tide. I lose one small pleasure after another.
Tiramisu. Fried chicken. Biscuits. S’mores. Gravy. Crab cakes.
The ingredients to avoid are wheat, barley, rye. And their insidious derivatives: maltodextrin, modified food starch, hydrolyzed protein.
Grape-nuts. Beer. Cherry turnovers. Shrimp tempura. Cheez-Its. Cinnamon rolls.
Some of these foods I’ll be able to recreate or improve upon at home, with time, effort and experience. Some of them I won’t miss enough to bother, of course. Many are replaceable only by poor store-bought imitations, unpalatable except through evoking the ghostly memory of a now-forbidden flavor.
Kit-Kats. Oyster crackers. Doughnuts. Eel and avocado rolls. Onion rings. Ravioli.
Some foods will be entirely irreplaceable, the specific weight and smell and texture too laden with emotional cargo for any mere substitute to ever be adequate.
My grandmother’s Christmas lebkuchen. My mother’s Thanksgiving stuffing. My daughter’s favorite pumpkin cookies.
The weight of them all together presses into me; a thousand paper cuts, each so miniscule that it would be ridiculous to remark upon it. Combined, though, I am awash in mourning. I long for the foods, to be sure, but moreso I long for the lost freedom not to think so very hard about what I eat.
I haven’t had a bout of anxiety in weeks now. The volume of hair left in my comb grows less every day. My lunulae — the half-moons at the base of your fingernails — are beginning to return. I couldn’t even say how long they’ve been missing. My always-stomach ache is mostly gone, and when it comes back, I know why. Day by day, I grow incrementally better.
Now, I walk by a bakery and breathe deep the scent of wheat flour and cinnamon, sugar, yeast. I try to enjoy them the way you might a perfume or a flower, by scent alone. Most of the time, it works.
Grieving can’t go on forever. In time, I’ll replace old pleasures with new ones. I try to focus on the foods that I can have: Grilled shrimp with mango salsa, caramelized plantains, flapjacks made with cornmeal; vanilla custard, home-made guacamole, Fritos; sliced tomatoes and basil, mushroom risotto, cheddar cheese, turnip greens sauteed with bacon. If I starve, surely it is only because I lack imagination.
I am saying a thousand small goodbyes, and it’s certain I’ll discover a thousand more before I’m done. I keenly feel the loss. It isn’t easy. But it is worth it. Such is the price of health: My thousand small good-byes.