A Thousand Small Goodbyes
Thursday, December 2, 2010 at 3:52AM
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.
Reader Comments (23)
There came a time in my life when I hit thirty years old, got married, had a child. And I thought now's the time to put childish things away. To grow up. Be responsible.
It wasn't until I hit my late thirties that more personal hardships started hitting me and most of my friends approximately the same age. These are the true tests of ourselves. Where old habits catch up with us, or new obstacles present themselves. They don't stop us. With the right support network, they only make us change our course.
Maybe "A thousand small goodbyes" would make a great web site where people share their personal struggles.
Then again - the last thing you need is another project on your plate.
But thanks again for sharing your soul.
Ralph: That's a really interesting idea. You're right, I shouldn't be starting anything myself right now, but feel free to run with it yourself, since it's your idea! And thanks for the kind words.
Tom: Yeah, I was pretty dismissive of the whole thing beforehand, too. :/ I would *love* to contribute to your project. Why don't you ping me about it in email sometime?
What started as a weakness in my arms and legs quickly progresses over two weeks into intense pain and an inability to move my arms or carry any more than my own weight on my legs. A handshake was crippling and I used the friction between both wrists to lift my toothbrush. It turns out, I was that 1:1,000,000 guy who had an adverse reaction to the H1N1 vaccine and had contracted Guillan-Barre Syndrome.
There was some levity: The neurologist would test my nervous system with a game I affectionately called, "Hold My Cattleprod." My wife would say, "Don't die -- I need you to start the lawnmower," or I would say, "Hey, sweetie, I'm dying; do you mind making me a sandwich?" But mostly I would look at my 18 month-old son and try to figure out how to explain that I can never pick him up again. We waited for the night when it became difficult to breathe because that would mean 20 minutes until my respiratory system was paralyzed.
By May, the symptoms had mostly subsided, but we both still joke about me being on the Conan the Librarian workout plan.
But I dodged a bullet -- as long as I stay away from flu vaccinations, I can say I caught a mild strain of a terminal disease.
I'm glad you found progress through food. Hopefully things continue to improve for you!
We're so fragile, aren't we? Any of a million things can go wrong. It's amazing we last as long as we do.
You have been and continue to be an inspiration for me, and I'm so happy this is working out for you! I hope you'll keep us all updated on your progress - and I would *love* to see that project Ralph suggested!
I have LowCarbed off and on for a long time (ten years) but it's never been out of medical necessity. However, I have, in that time, run across people who do it out of medical necessity - like the gluten-free folks.
What I will say is that there is a LOT out there. A lot of the high-end grocery stores have gluten free sections and it's trickling down into regular grocery stores. Here in LA, we have multiple options to get Gluten Free pizza, etc, etc.
I know that there's an emotional connection to food (me + you = nachos!) but the great part is that you can create new ones.
Big love.
You be strong, Andrea. You *are* strong, Andrea.
If you could continue to work through the awful symptoms for such an extended time, I'm sure you have the will power to resist the temptation of gluten (much better than I was, I'm sure!).
This truly was a lovely post! Thank you so much for sharing your journey!
That should be noted in the cosmic record.
-- c.
Now I'm lactose intolerant. That one is terrible. Luckily there is lactaid, though it only works for me to a point.
I should say that you really can make or buy a lot of gluten-free stuff that is just as good as the original. My wife went gluten-free when we discovered my daughter is also celiac. She swears to me that my brownies and cinnamon rolls are just as good as the wheatie ones.
slackmistress: It's true there are a lot of foods out there now, and some of them aren't even completely horrible in texture. I'm trying, though, to mostly focus on stuff that is just plain safe, and not substitutes for right now.. it's an attitude thing. I should probably do some looking into classic low-carb eating for inspiration.
Scott: I got glutened by mistake on Saturday and it was like I had a stomach flu. Being strong will so not be an issue for me. >_<
chrisbean: I knew of Gluten Free Girl, but I didn't know Babycakes had a cookbook. Thanks for the tips!
Novel Patient: Thank you. ^_^
Chuck: Oh, I am blushing. But seriously, thank you.
Andrea: Yeahhhhhhh, I hear you. We have a lot of the same, huh?
Spencer: OMG tell me about cinnamon rolls. Bought? Baked? Details, I demand *details*! But aside from that... yeah, it is hard. Gluten is in everything, isn't it? Cheers for your grandparents and a smart doctor. I still have to finish the medical cycle and work out if it's celiac, gluten intolerance, wheat allergy, or whatever other crazy thing it could be. But boy howdy is it *something* in that family.
There are a ton of gluten-free products in stores now. WAY more than were available 4 years ago when I began my gluten-free life. I don't know where you live, but some cities really embrace us GFers, so you might be lucky about which restaurants you can eat from.
One of my favorites, when I just need a fix, is the Glutino wafer cookies you can get at Whole Foods. They taste just like the "real thing" and they're SO good.
I'm expecting that you're already acquainted with Shauna (http://www.glutenfreegirl.com) and Karina (http://glutenfregoddess.blogspot.com) - those two blogs were SUCH lifesavers to me, especially in the beginning.
I'm a gluten-free pastry chef, so let me know if there are any specific goodies you love. I can share some tips and recipes.
I wish you the best of luck with this, and I'm glad to hear that you are finally starting to experience some relief. (I've had similar experiences with doctors, ugh.)
Cheers,Kelley
I found this link via my friend gfcookiegirl, and as I read it, it was like reading my own story.
I had multiple, debilitating panic attacks for the lion's share of two years, and saw a few doctors who did various tests only to tell me "There's nothing wrong with you." It got to the point where I just accepted that this would be my life from now on. The constant tension ruined one of my shoulders, and the side of my left index finger is permanently calloused from unconsciously gnawing on it during my attacks.
I finally got a doctor to diagnose the panic attacks, and prescribe ativan for them, and that cut the attacks in half, since I had a little control, and was no longer panicking about the panic. That was when I was able to realize that I would most often get an attack about 20 minutes after eating.
Fortunately, at about that time, my wife and I started hanging out with a girl who had celiac disease, and we went for a gluten free pasta dinner with her, and I remarked how that meal didn't make me feel uneasy, and when the friend heard my story, she basically demanded I go get tested.
I've been gluten free for about 6 years now, and until about a year and a half ago, panic attack free. More recently, when my symptoms returned, my doc had me do a blood test that checks for a bunch of different food intolerances and alergies ( http://www.rmalab.com for anyone interested) and am now off of dairy, eggs, soy, garlic, cranberries, asparagus, hazelnuts, peanuts, and about half a dozen other things.
Surprisingly, I haven't had a hard time giving up the foods, but, like you say, the lack of freedom and social difficulties that come with are a major struggle. It's hard not to become a creepy weirdo hermit when any kind of 'going out' implies some kind of food will need to be eaten. It helps to have friends and family who are understanding and supportive.
Anyhow, I'll stop clogging up the comments box. I just felt compelled to say thanks for being a kindred voice, and for doing such a great job of putting into words what many of us have been through.
Take care,
Chris
Chris: Gosh, that sounds even more horrible than mine, esp. on the extra allergies. We're a family of multiple food allergies, though, so I know what a pain they can be. It's nice to know that you can get the hang of it.
The thing I'm most, most worried about is social/business events. I do a lot of casual business lunches and coffees, and I travel to a lot of conferences where the action all happens at restaurants. I'm worried about how I'll make it through SXSW without getting sick in March. >_<
It's frustrating having a negative test but knowing I definitely feel better without wheat and trying to explain that to family who just want to know "what did the doctor tell you?" As if my own instincts and body knowledge hold no authority to convince them it's not all in my head.
I'd love to know if there are any resources for recipes that are GF and egg free, seems like all the GF baking recipes use a TON of eggs!
The first sign of a gluten-ing is often itching or tingling around your lips, or in your mouth. This is the cue for you to stop eating and focus on your drink and the possibility of ice cream for dessert.
If you keep eating for some reason, there's a pill out there called gluten-ease that will lessen immediate symptoms for you. The long-haul problems will still be there, but you might not have as much of a tummy ache that night.
I've been doing this since I was a little girl, and believe me, it is much easier these days to find safe food. If you like, I can toss you my tips for surviving on the road, too. Good luck and good health to you, Andrea!
Sheri: That is actually quite helpful. Thanks!
Baxt: Wow, so much great info. I've been staring at those cinnamon rolls and wondering if they were awful... any advice you can give me on traveling would be very helpful. I do so many conferences!