My five-year old son, Andrew, has the most delightful post-dinner ritual. If he has eaten an especially large meal, he rises from the table, hikes up his shirt half-way to his chin, and has us admire his full stomach. “Would you look at that.” he typically asks, patting his round and taut stomach. Like actors following our cues, my husband, Jay, and I say, “That is one full belly. You ate a good dinner.” And then Andrew allows us to pat his stomach, rather like a fine Victorian lady offering her hand to a suitor for a kiss. In truth, the belly Andrew offers for show really is a splendid one. His skin is perfect: not a scratch or a scar mars the smooth white skin; his stomach is free of stretch marks or rough patches where even a sunburn might have changed the texture.
What makes this stomach showing so special is my awareness that it won’t last much longer. In the fall, Andrew will start kindergarten. He will learn from other kids what is “weird,” and I’m pretty sure that showing off your stomach will fall under that rubric. When he begins school, he’ll encounter “peer pressure” (or whatever you call the kindergarten version of it) for the first time. He had a few months of preschool a couple of years ago, before my sarcoidosis became extra busy and infiltrated my brain and nervous system. Once that happened, my doctors piled on one immune suppressing drug after another and told me to pull my son out of preschool or any other group activity where he would inevitably attract the brigade of colds and flus that are as much a part of growing up as learning to write your own name and ride a bicycle without training wheels. In a healthy mother, a cold or two is no big deal, but the White Coats warned me that in my highly immune-compromised state, a simple cold could quickly morph into a lethal, untreatable pneumonia, the kind of thing that killed actor Bernie Mac (who was also a sarcoidosis sufferer).
Andrew’s stomach is so different from my own that I can’t help being captivated by its silky exterior and its equally perfect inner workings. At age five, he has outgrown the food allergies that plagued him as an infant and a toddler. Now, like all other kids, he wants pepperoni pizza and ice cream (once taboo because of a milk allergy that caused hives and explosive diarrhea). He’s also—thankfully—taken over the tasks of elimination. Only occasionally, he’ll call for extra help with the “paper work.” (This represents major progress. A few months ago, he had the laughable double standard of demanding privacy while he used the bathroom—which meant that he ordered us not only out of the bathroom with the door closed behind us, but also out of his adjoining bedroom, with that door also sealed shut—but then, moments later, would holler, “I’m READY!” at the top of his lungs, and then present his ass to us for cleaning.) I certainly don’t miss soiled diapers and trying to intercept his squirming bottom with a wipe, but his self-sufficiency is yet another reminder of time’s passage, of how suddenly our baby has grown. He hasn’t outgrown his need to announce, “I’m going poopie,” on his way to his bathroom with his books and magazines. Like clockwork, he makes this pronouncement in the morning and after dinner.
Why all this talk of tummies and their unsavory byproducts? Like I said, I’m hung up on the contrast between my son’s and mine. Instead of presenting Andrew’s unmarred façade, my stomach looks a topographic relief map. Nearly five years on high doses of prednisone has contributed to my monumental weight gain—nearly one hundred pounds, and the purple stretch marks that came with it. Unlike my son, who stops eating when he is full and feels no shame when his small belly bulges from a good dinner, I have a lifetime dieter’s wariness when it comes to gauging my own appetite. “Am I full? Am I full enough? Am I too full? Will I completely lose control of my food intake if I have another potato?” are only a sampling of the litany of questions that run through my brain whenever I think about food or sit down to eat. Also unlike Andrew, I would never, ever present my gut for praise. No, unless some dire emergency (and I’m talking real emergency, like to staunch the flow of arterial blood) requires me to tear off my midriff’s covering, I keep the expanse of white flesh from my neck to my hips under wraps. No bikinis for me, no tiny tees designed to flash a bit of belly, no hip hugging jeans that make the gut area open for perusal. On the other hand, corsets might come into style. Or when I kick my sarcoidosis into permanent remission, perhaps Jay and I might move to Yemen or Saudi Arabia. I think a burkha would suit my current stomach situation.
I envy Andrew’s carefree attitude toward food and his body, and both Jay and I are zealous to keep our food/body neuroses as far from him as we can, so that he can continue to love his belly—and his arms, legs, skin, nose, and every bit of himself. (Really, we do. And really, I am joking about burkhas and corsets. And really, I am actively working on improving my own attitude toward food and my body.) But at school, just as surely as a fish absorbs oxygen through its gills, he’ll imbibe our culture’s dis-ease with the flesh, with the shape we each have. Jay and I comfort ourselves with the fact that our only child is a boy. Although it’s not impossible for a young man to develop an eating disorder, it is much less likely than for a girl (Or so we tell ourselves. Jay just read to me that someone has come out with a version of the male girdle. That can’t be a good sign.) Hopefully, Andrew won’t start on his first diet when he is nine years old, like his mother did. Hopefully, he’ll show a bit more strength in the face of the diet industry (which, according to a University of Colorado study, takes in over $40 billion a year) than I did—loathing my lean athlete’s body because it didn’t match the heroin-chic models staring out of glossy magazines at the supermarket check stands. Hopefully, Andrew will learn from his father and me ways to deal with his feelings that don’t involve stuffing food into his mouth. Although I’ve worked hard to separate the rage I feel about contracting such a debilitating form of sarcoidosis from my underlying impulse to soothe that rage with chocolate chip cookies, it’s an ongoing process. It took me a lifetime to develop the habit of shoving food into my mouth whenever I feel sad, anxious, lonely, or overwhelmed, so I can’t expect to change overnight what my mind perceives to be a tried-and-true coping strategy.
Besides the differences in our tummies’ external appearance and in our perceptions of our stomachs’ loveliness, the other major contrast between Andrew’s tummy and mine is one of function. Like I said earlier, my son likes to announce his trips to the bathroom, and his poopie pronouncements are nearly as regular as the Italian trains were fabled to be under Mussolini. I, on the other hand, have entered gastro-intestinal hell. My digestive trains have been taken over by sociopathic, dyslexic anarchists—not only do they not care if the trains are running on time, these bastards want to see head-on collisions between freight and passenger trains. Since the first of this year, I’ve been hospitalized four times with uncontrollable diarrhea, sometimes with some uncontrollable vomiting thrown into the mix, just for fun. While in the hospital, I have been well cared for (and thankfully rehydrated), and I’ve also had almost every known test run on my stomach, colon, and stool, all of which have turned up nothing unusual except for a fungus growing in my esophagus (apparently not that abnormal after years of immune suppression.)
For me, diarrhea has usually been a laughing matter. Having traveled and lived in undeveloped countries, I’ve had my share of 48-hour unpleasantries in the potty. But like a lot of other folks, I really don’t like to talk about my feces or the organs responsible for producing and regulating the stuff. Faced with a food- or water-borne parasite, I’ve typically sung a few bars of the kids’ tune, “When you’re sliding into first and you feel something burst, DIARRHEA!” However, the past few months have taught me that crapping is no joke, especially when, like me, you are doing so fourteen or fifteen times a day (and that’s with Imodium in my system). Suddenly, I’ve lost my childish squeamishness with all things scatological, and have a visceral (no pun intended) compassion for the thousands of people who die of cholera (which involves shitting oneself to death, literally, because of dehydration brought on by diarrhea caused by contaminated water).
The medical details of my gastro-intestinal problems (and the possible solutions dreamed up by five different doctors) I’ll save for my next post about my recent trip to Cincinnati. In short: all I can say for certain is that I do not have sarcoidosis in my gastro-intestinal tract (good news), but it is not clear what I do have. In the meantime, I have no idea what to eat, or not to eat. The sensible weight loss plan I was following (and which was working, even with me still on prednisone, at the sensible pace of about a pound a week), is impossible to continue, since it involved eating lots of raw and cooked vegetables, legumes, brown rice, and fruit. Lately, I’ve been eating stuff in the banana, white rice, saltine, and toast families of food. (I have lost 10 pounds in the last two weeks and 30 pounds since New Year’s, and while I’m not sad to shed the extra weight this is absolutely not how I would have chosen to go about doing it, and this is ridiculously unsustainable.) I’m also in a fair amount of pain. I’ve become accustomed to the head pain, and the familiar swirling sensation of the accompanying vertigo. But this gut pain is new. Sometimes, when I’m in the throes of one of my day-long diarrhea fests that land me back in the hospital, no matter how much water and Gatorade I swill to offset the dehydration, I experience an awful cramping and convulsing in my lower abdominal region. Usually, though, I have a constant, stabbing pain in the area around my navel. Eating makes the knife twist and plunge a little deeper. But the shiv is always there.
If you’ve read a few of my blog entries, you’ve probably figured out that I try to learn from my experiences in Chronic Town. As I’ve written many times before, I do not believe that I “earned” my house and lawn in the land of the chronically ill by my past exercise, diet, travel, or emotional habits. I also don’t believe that any Higher Power (good or bad) gives people sicknesses—to test us, to punish us, or to get us ready for an afterlife. However, I do believe that I have much to learn, and at the present time, I have two teachers: sarcoidosis and my son. Sometimes the duo has different lesson plans, and I know for a fact that Andrew detests my disease and its treatments for how they make me sick and inaccessible to him. But becoming diagnosed with a chronic illness at nearly the same time I first became a mother has split me open so that I can see the chasms in my understanding. Without Andrew, would I ever have witnessed the sheer delight a human can take in his own body? Would I ever have learned how sorry and warped my own view of my self was? Perhaps, but without Andrew’s future emotional health partly in my hands, I doubt I would have been so motivated to put in the hard work I now am doing to appreciate the miracle of my own flesh and bones (even with the limitations of disease and weight gain). And without the goal of being alive to watch Andrew reach middle age, I also doubt that I would have put in the equally hard work of learning to care for my body and my feelings. Sarcoidosis—and the medications I take to eradicate it—never stop surprising me with hard lessons about the amazing complexity of the human body, how it takes so many organs working together to allow me to walk on this earth. Sometimes, I suppose, you have lose something to know what you had. It’s a cliché, but one I live every day. With Andrew and with whatever fanged thing that has taken up residence in my guts, I am learning about the miracle of eating and eliminating (although the miracle loses its thrall when the elimination extends beyond two or three episodes a day). I am learning about the joy of a full stomach, the visible sign of a good dinner. I am learning that food isn’t necessarily about potential fatness; it isn’t necessarily about the calories needed for a hike; it isn’t necessarily about the vitamins a healthy body extracts from it. Food simply can be all about a kiss on a warm, rounded tummy.