Full Esquire Article at - http://www.esquire.com/print-this/chrons-disease-diet-0909
This feels so illicit. And stupid. But really, I must lick this french fry. I'm not asking to eat it, mind you, that wouldn't be good. I just want to lick it. Taste its salt. I cower in the kitchen, hiding from my wife and boys, who are out there, on the other side of the door, enjoying a sumptuous dinner, like eaters do — devouring what's delicious, picking at what is not, saving room for dessert — while I starve.
Yes, I'm starving. There's been nothing for two months now. No food, no drink, nothing in my mouth except the air I keep sucking. It would be plain to say the hunger is driving me mad, because it is. I crave food more than sex. The smell and touch of food can drop me to my knees. Food left me suddenly, in the chaos of emergency surgery, and, empty of food, I think about it constantly, an obsession that magnifies the ordinary into the surreal. A simple french fry is a wonder, an uneaten crust of bread salvation; something as unattainable as a fried egg, life itself. This trance is not healthy, or normal, but then those two words have also left me suddenly. Nothing I can do will fill my empty gut and conquer the hunger, and, equally, there is nothing to be done by anyone else. There is no way to share the pain or accept relief, which has a way of driving away people and their best intentions, discouraged by the frustration of their uselessness.
At mealtime, tonight for instance, I unpack bladders of laboratory-made nutrients that substitute for food and fill syringes, priming the pump that shoots the food bag full of fortifiers into my vein to keep me alive. But nothing in that bladder relieves the hunger.
Meanwhile, for the eaters in my house, my wife cooks a plate of minihamburgers and french fries. The apartment's windows are shut against a chilling rain, and the place is overpowered by the smells of the local diners I dearly miss. She and our two boys eat at the dining table at one end of the living room. The table is set with candles and a blue glass bowl of precious winter fruit. My customary end chair is unoccupied; I sit on a worn leather love seat at the opposite end of the room, keeping company with the food pump. For the first meals after I was home from the hospital, I tried joining them at the table, a happy-meal family, but my starving presence disturbed the kids, and I've been marooned on the love seat or exiled to the bedroom ever since. The silver-dollar-sized burgers and petite seeded buns excite the boys, and they yammer with mouths full of food, their speech garbled by chewed meat and bread soaked in warm juices. One after another the patties fall, cutting down the pyramid of sliders, and I can only watch and listen as the plate gets swept clean. Our six-year-old kneels and turns on his chair. He has taken a momentary break from the carnage, his mouth a juicy mess, and he trains me with a severe look. "When will you eat?" he demands in a voice complicated by vulnerability, the worry that afflicts all children whose parents get sick. "Soon," I lie. "Tell me about the burgers." It's a lame attempt to take his mind off the skeleton before him. "Do they remind you of White Castle?" I ask. This is met with silence, and I realize the boys have never been to White Castle. There is nothing for them to be reminded of. Nothing for them to miss. They look at me blankly and then go right back to savoring the food like lions on a carcass. The plate's empty.
"Mom, these are so good. Can I have more?" our ten-year-old breaks in. He's generally a picky eater, but not tonight. On her way to the kitchen to replenish, my wife regards me with a silent, sorry look. After everything they've had to put up with, their lives frightened and made insecure by my health, I should be pleased by the sight of their shared simple pleasure. But I am too far withdrawn into the abyss of my gut, plagued by the dismal reality of moment-to-moment desperation. When she comes back, I slip into the kitchen and leave the carnivores to their assault. Pressing out of view, tight against the warm stove, I touch a fallen nest of fries scattered on a baking sheet with all ten fingertips. They are crisped and stinging hot to the touch. I pick up a handful, bring it to my nose. Food has not passed my lips for sixty days, and the oiled, salty fries make me dizzy. I bring one to my mouth. I lick it. The texture is bewitching — coated and crunchy as I had fantasized — but the salty taste that should open in the mouth is frustratingly absent. I lick again. Nothing. I bite off a piece and nestle it into my tongue, sucking for salt. Absolutely nothing. My tongue is as shiny smooth as a porpoise.
My taste buds are gone.
I spit the mangled potato into the trash. Just then, my oldest walks in, catching me midspit. "Dad, you're not supposed to eat," he scolds. The food police, they come in all sizes. "I didn't eat!" I say, aware of my brittle and defensive tone. "Really, sweetheart," I say, softening, trying to sound more dadlike, more like the man I was before the hunger came to stay.
The boys were at school and my wife was teaching, unreachable in her windowless bunker, which blocks cell-phone reception. Me? I was writhing on the rug in the living room, very surprised to find myself suddenly dying.
Bright sun smoked through the room's dirty windows and smacked me blind. I'd let go of the thermometer, which registered 106 degrees, dropped it to the floor, where it lay next to the phone I'd used for three ambulance calls and to wail to my gastroenterologist, "It feels like a blockage but worse! Like something has ruptured!" I'd known this because I am sick with Crohn's disease, a chronic illness of the small intestine that generally is merely debilitating, but now was just going to murder me. The room was rattling, pounding, the cockpit alarms all wailing. I was going down.
Voices entered through the fever dream, got closer, over me, shouting. Somehow, I was then in a hospital, in a room filled with different light, stark and white. Light boxes lined the walls of this room, and below them a ring of computer stations that suggested a command center, like a movie set of a spaceship. CT scans of my ruptured gut filled one wall. A surgeon stood with her back to me studying X-rays, tiny in the spacey void of the chamber. She said her name was Gandhi, which in my haze seemed ridiculous, and gestured dramatically at the milky loops of my insides.
"A stool blockage formed in your small intestine and tore a perforation in the intestinal wall. Since the moment the perforation opened the small bowel, bacteria has been pooling in your abdomen, causing peritonitis. It's an unusual scenario, and if we delay, there's a high risk of sepsis developing from the bacteria flooding your abdomen. You don't want that. It could be fatal. We have to operate immediately."
A stool blockage? Undone by my own shit. A fitting epitaph.
NPO is an abbreviation for the Latin phrase nil per os, which translates roughly as "nothing by mouth." For hospital patients, an NPO order is a condemnation. It translates to wasting away on an intravenous drip while your roommate bitches about the vulcanized chicken on his tray. I have been NPO since the operation. No one is NPO for sixty days — at least no one ought to be. It wasn't supposed to work out this way. Two days after the emergency surgery, I calculated as imminent the arrival of the awakening gurgles of motility that delight both colorectal surgeons and their starving patients. Passing gas would license the doctor to unthread me from the catheters and tubes that probed from end to end and introduce the first swallows of an initially liquid diet. From there it would be a short GI walk to the holy grail of peristalsis: smooth-muscle contractions that propel food distally through the esophagus and intestines. Man, that's poetry!
But it never happened. Infections, abscesses, and, most serious, a fistula formed around the surgical area, preventing digestion. The only method of healing was to put the stomach to sleep until it organically closed its holes, like a patched garden hose. After two difficult hospital stays, I am home, again, enduring the deprivation of NPO. Down thirty-five pounds from my presurgery weight, I have become the Man Who Couldn't Eat, which was kind of funny before it seemed quite so goddamn literal. And permanent. I look at my cadaverous figure in the bathroom mirror, the open surgical wound a monstrous red hole cratering my stomach, and am stunned to see Sid Vicious in his last days at the Chelsea Hotel.
I look deeper. A funny thing about total food deprivation is that everything, and I mean everything, conjures food. Even when you don't see it coming.
"Jesus Christ, why is Thompson Lake carved into me?" I ask the mirror. The brutality of the surgery left a gruesome gash, eight inches long and two inches across. Oblong, asymmetrical, narrowed at the ends with a small pond orphaned in the north by a causeway of skin, a pool bulging in the middle, the scalpel's outline copied the topographical form of our lake in Maine, as charted on the map hanging on my sons' bedroom wall. That ten-mile body of water was glacier-formed twenty-five thousand years ago and, like the fistula in my gut, has yet to close. Thompson Lake is our escape, the valve that releases the pressure of daily life upon arrival. It's also the place where the outdoor grill awaits, and as I prop against the sink framed in the bathroom mirror, I am suddenly there. Boxed in our city kitchen for most of the year, I yearn for sparkling summer and my station at the grill. Because greatness comes from that grill. Shrimp, scallops, clams, fresh lobster, peppers, sugar and gold corn, burgers chocked with onions, Katz's franks by the pound driven up from New York. Me in my Katz's apron, tied around like the cutters behind the tall glass counters. Katz's Deli! When I was a kid, my father and I would make a special trip down to the Lower East Side to provision for the lake, and as an excuse to split a hot pastrami lean on club, a sandwich big enough to feed our entire family for generations, the mountain of briny, smoky brisket, dripping with spices. Standing under Katz's hanging salami chandeliers, we'd count the linked dogs as the counterman layered them in sheets of brown paper and spooned pints of spicy mustard into old yogurt containers. The smell of the place was like nothing I'd ever known, a century of smoked meat permeating the air, a lusty Jewish kitchen smell that filled our station wagon as we made our way up to Waspy Maine to feast all the summer long.
Now, whatever the meal, opening the grill's heavy lid and releasing the magic of smoke and the smell of dinner makes us all giggle like idiots. Glass of wine in one hand, burnished spatula in the other, my trunks dripping from a quick swim while one side of the fish grills — that's Thompson Lake. It is the retreat we have been escaping to since my grandfather hitchhiked there as an unemployed Depression kid in the summer of 1930. However, stamped as it now is on my gut in permanent ink, the image has a different connotation altogether, and my reverie is suddenly broken. Gray in the mirror, I am a starving man. My stomach paralyzed by inertia and medicine, the hunger rages not there but in the middle of my head. "Let's face it," I say into the mirror, "you'll never see Thompson Lake again." I tie my robe around myself to cover the wound, and shut off the light.
TPN sustains me, allegedly. Total Parenteral Nutrition is the laboratory name of the mixed bag of nutritional fluids that filter into me. The therapeutic solution is pumped by a battery-operated machine through an umbilical cord of plastic tubing — a PICC line — that has been inserted into a vein in my left triceps and runs into my chest, where it doles out the soup. I run the TPN pump fourteen hours a day, plus there's another four hours of medicinal octreotide and saline solution dripping from bags hung on an IV pole. Our peaceful bedroom has been stocked like an infirmary. The same minirefrigerator that sat in a corner of my college dorm room, stuffed with Michelob and hash brownies, is now stuffed with bladders and vials of thiamine, folic acid, famotidine, and insulin — the ingredients that fortify TPN. TPN is complex. And expensive. The 3,000-milliliter bag of solution, a slippery five-pound load constituted of a base formula of dextrose, Travasol, Intralipid, selenium, chromium chlore, and a dozen other chemical essentials, runs $800.
In no way can TPN be confused with actual eating. Pulling on rubber gloves and laying out potions and needles on beds of sterile wipes across my living-room table, I feel more like Owsley Stanley producing kitchen-clean LSD for the Merry Pranksters than the passable cook I used to be.
All the moving parts and the TPN feed bag reside in a backpack, slung over my shoulder like a nylon hump. The programmable pump is about the size of a jumbo foundry brick and weighs as much as two. The pump's motor, scarcely muffled by the backpack's casing, grinds in continuous cycles of whirs and clicks, parsing the thin white stream of medical milk juicing me from 4:00 P.M. to 6:00 A.M. My freighted movement from bed to toilet to living-room couch is accompanied by a continuous-loop soundtrack, and the ceaseless engine racket is a loud party to conversation, television watching, sleeping. Often, I am humiliated into leaving the room.
As I get pumped on the overnight shift, the groaning backpack rests on a night table next to my pillow, tying me down in a single position in bed. When I roll over in my sleep, I am awakened by gear crashing to the wood floor. But I don't often sleep long enough to roll over, as hourly my bladder fills to bursting and I wake, dragging the pump to the bathroom. The endocrinologist who cooked up the TPN routine says that's just the way my body is reacting. Everybody's different, and there's "nothing to be done." I haven't slept more than an hour straight since the surgery.
Food never did this to me.
This evening, I put off the sweating-and-pissing marathon and watch TV alone in the living room. On Charlie Rose, Ferran Adriá, the celebrated Spanish chef of El Bulli, is a guest, animated by his philosophy: "Eating is the most intense experience in the world. There is no other creative moment that uses all five senses," he says. "Breathing and eating are the only things that we do from the moment of birth and for the rest of our lives." He explains that human beings have a complex relationship with food — their previous experience, the context of eating, of memories, of traditions, associations both regional and personal.
In this room illuminated by the bright image of the talking chef, his declarations penetrate the gloom with profound insight. NPO has eliminated more than simply the mechanics of eating. The day-to-day cooking, shopping, and nuclear-family integration that defines my caretaker role has been put in suspended animation, along with the dinner-date prospects that permit my wife and me to remember why we married each other. Food has been a partner in the substance of life, making and filling the experience. This medieval "therapy" has neutered my identity. My clothes hang like slack sails in a dead calm. I live in a pair of black elastic-waisted running pants to camouflage my shrunken physique.
I feel the Spanish chef pass through the screen and deliver his words directly to me. Yes, "breathing and eating," I hear you. As a side effect of the physical illness, I am plagued by this cognitive myopia, a condition that further isolates the patient and aggravates unfortunately proximate loved ones. Aside from exhausting people's patience, this warped perspective makes it difficult to distinguish what's meaningful from what's merely self-indulgent. Deranged by hunger, without the filters of reason and moderation, I have received messages from many unlikely sources. Listening to an old Bob Dylan song I have heard a hundred times, the line "I've got a hole where my stomach disappeared" jumps from the speakers like divine prophecy. Testify, Bobby. I come upon a rerun of the creaky episode of The Odd Couple in which Felix and Oscar starve at a fat farm. The shameless peppering of borscht-belt jokes strikes me as deep wisdom. I've got to get out of the house.
I drift back to Ferran Adriá, whose kitchen eloquence continues elevating the properties of food. I suppose this isn't surprising coming from a chef. You might not expect the same food-centric worldview from, say, an actuary, but I believe the resonance of the great man's message goes beyond my egomania. In fact, the chef's philosophical picnic falls short of assessing the complicated impact that food is having in my household. My polarity between despair and hope is roused by the nightly parade of food coming to our door.
A group of dear school parents, neighbors, and old friends organized themselves immediately after my surgery and channeled their collective desire to help into a wonderful service: home-cooked meals-on-wheels. Creating an online meal calendar, they have been volunteering daily to cook and deliver dinner and dessert to our home, skewering the myth that city folk are hard and uncaring. Roast chicken and French beans. Penne in red sauce and turkey sausage. Lamb stew. For my wife, this kindness has been a godsend, saving the family from a spiral into takeout and junk. In the hospital, I was lifted by the dedication and compassion of this treasured community of people. But, while it remains salvation for the house's eaters, for the starving among us the generosity of spirit baked in the bounty is ruined by my ravenous cravings.
Earlier, I languished at dinner, cuffed by the incessant TPN pump on the love seat, while across the room my family chewed on the gift of another well-made meal. A knock comes at the door, an upstairs neighbor, a woman whose exquisite brisket has actually compelled me to a Passover table. She enters the apartment carrying a chocolate Bundt cake that has been soaked in rum, spraying the air with an intoxicating allure. A few whiffs raise me to the kitchen, and I plow my nose down to the cake to inhale, anteater-style. Woozy on the fumes, I breathe deeper. Smell alone won't cut it, so I touch the wet cake with clumsy fingers, running them through dark chunks that crumble impossibly. It's like chocolate rain falling in a desert. Just as my wife walks into the kitchen, I plunge my hands into the delicious cake. I should be embarrassed, or at least try to hide what I'm doing, but I am too far gone. A sensible person, she is stunned by the mess I've made, bothered by the violation of the family's dessert. "What are you doing?" she asks urgently and hushed, so as not to alert the kids in the next room, her face a disagreement of pity and scorn. I look at her, shake my head, shrug, and laugh weakly, the chocolate caking my hands like blood.
Selfishness is not an answer. Increasingly, it seems, we are closing in on the limits of our patience, with each other, with me, with my sickness, with my attitude. Chronic illness, always lurking, has become the handmaiden to my checklist of life's larger failures and what now seems like inevitable doom. But failure, desperation, defeat do not come naturally to my wife. My descent into the experience of food deprivation, my plummet into the Bundt cake, clashes with her innate optimism. The misery of my relentless hunger has contaminated her previously unshakable belief in our quest for happiness. Why did I destroy your dessert? Isn't it obvious?
Passing out in the living room after Adriá's rhapsody, I am revisited by a nightmare. There is an apocalypse that I alone survive, left unattended, damned to a torturous, suffering death. X-shaped towers like crossed hands congest the skyline of my subconscious, bladed at their sheared edges, quaking and colliding into each other in a deafening cacophony. As I walk empty streets, there is no sign of life, no people, no food to be had. Fires erupt. Lost among the unfamiliar ruins, I stand at the center of a decimated intersection, its crumbled pavement collapsing beneath me. There is nowhere for me to go. As far as can be seen, the landscape is a charred mountain range of rubble, like in the pictures of firebombed Dresden. An eternity of starvation seems a certain fate. Then, there is movement. From behind the corner of an adjacent building shell, a figure appears, tiny at first sight but gaining size as it approaches. I am stuck in the crushed pavement, unable to free myself as the figure nears, then closes in on me, striking me with violent blows, bloodying my broken body. I awake screaming like a siren. The TV is still blaring, and I shut it off, reducing the room's light to the squares of ambient nighttime glow smearing the windows. I long for a cold drink to shake off the nightmare. Instinctively, I stagger to the kitchen and open the refrigerator. The door is heavy, loaded with bottles and jars. I see the shelves for the first time in months. They are double- and triple-stacked with intact meals and leftovers, filled so deep that the refrigerator's interior light is shaded. A golden-hued cheesecake almost tumbles off its perch, and I feel something like the sting of a phantom limb. I grab the pitcher of water and bring it to the counter to pour. But then I remember. It goes back in, and I return to the couch, shaken, drenched in the murk of TPN, filling with expensive piss.
After the dream's first visitation, in the hospital, I was visited by a staff psychiatrist. "Are you a threat to yourself?" he asked, getting quickly to the mandatory question. I didn't know how to answer. Even if I'd wanted to kill myself, I didn't have the strength, freedom of movement, or tools to do it. However, for the first time, I saw the imminent possibility of death, and the prospect of a family without me amid growing belief that they would be better off. My wife is young, beautiful, charming, and accomplished. My kids have everything ahead of them.
The mood followed me home. Shackled by the tyranny of NPO, of never eating, of never being liberated from chronic illness, I have surrendered to a reflexive litany of complaints and anger, directed mostly at my wife in belligerent attempts to validate my pessimism: You can eat; I can't. You feel healthy; I don't. You are alive; I'm not.
A lesson here: Solipsism is destructive. It has infected our marriage with an explosiveness that neither of us knows how to cure. On the kids' spring break, my wife escaped with them to her parents' house. A nasty fight sparked the night before their flight, punctuated by the kind of language that explains divorce. Apparently, I haven't been the only one contemplating the future of the family unit without me, and the scenario of our marriage failing has become conceivable, the endgame of degenerative distress. We have both been tried by these months of hunger, devoured by an emptiness no one expected.
We need food.
One Wednesday at 7:00 A.M., my gastroenterologist folds into an uncomfortable chair at the foot of the bed for our daily talk. Another bacterial infection formed in my intestine at the surgical wound and has landed me in the hospital. Immediately, the catheter was pulled and the TPN halted. Sustained by nothing but a saline drip for the past eight days, my body has whittled to a reed while the doctors determine what to do.
"I believe that surgery is becoming the only option, but it's still too soon. The disease has returned and is more advanced. The infection shows that. Your hemoglobin and protein levels have dropped again, but you can't go back to TPN with active infection. However, we've got to get you nutrition, even if it's just to get healthy enough for surgery."
"That's not the best prognosis I've ever heard," I say.
On cue, my roommate gripes across the divided room about his lousy breakfast, his hopes instantly undone by the first taste of charred coffee. "Oh, shit. This is worse than yesterday. Jon, you don't know how lucky you are."
"I know," the doctor answers me.
Grimacing, he deliberates and glances down at my chart. "I'm going to start you on food."
"How?"
"Liquids first, then softs, then solids. We'll see how you do."
"Meaning what?"
"Diarrhea, nausea, pain, fever. If there's a problem, I'll have to convince Dr. R — — we can't wait any longer for surgery. Hopefully, you'll improve."
" 'Hopefully, you'll improve.' Doctor, that doesn't exactly inspire me with confidence."
"We've got nothing left."
Ninety days in, I am eating again, though it is not the stuff of my fantasies. I still have no taste buds, the bristle of cells atrophied from neglect, and food passes in the absence of flavor. As an experiment, I've heaped dishes with vivid curry and saffron, but even they have failed to raise the dead. My stomach is also still entirely paralyzed. The induced coma of TPN and octreotide has left an absurd legacy: Now that I'm eating, there is no sensation of hunger or feelings of digestion or satiation. The entire eating process is anesthetized from tongue to gut. I can eat, but I can't experience it, as though I live, but my gut does not.
Toward the end of a wet spring, I submit to a follow-up exam. I drink the cups of barium, and the doctor takes dozens of pictures. At two o'clock he orders me to go get something to eat, then return for a final round.
"Living with chronic illness means living with uncertainty. That's the challenge. You have a choice: Either withdraw into yourself or move forward," he says. It's a difficult prognosis to accept. Accepting uncertainty requires ditching the denial that has seen me through for decades. It may also require adapting to chronic hunger, because the pictures will come back with mixed news: The fistula has healed, but the disease is active and intense.
But for the moment, food, real food, awaits.
There is a diner that over the years has become my chosen site for end-of-procedure bacchanalia. This is a friendly place, animated by the crash of conversation, plates, and smells, and I take the last open stool at the curve of the counter, in line of sight of glass cases glistening with apricot Danish and glazed doughnuts. The counterman, softly accented with reading glasses hanging from the V of an open-collared shirt, takes the order I make without consulting the thick menu. What do you want? We'll make it. In three minutes the oval plate is out from the kitchen, handed across the open top half of a Dutch split door. In his diary, Richard Burton, a man of considerable appetites, wrote of the pleasures of American short-order cooking that he discovered at the Excelsior diner, saying he preferred the instantaneous wonders of the griddle to anything cordon bleu. Sadly, the Excelsior, a charming dump I frequented for years, closed not long ago, a casualty of Manhattan's real estate madness.
I've done my part to keep alive the remaining joints but haven't been much in the fight recently. God willing, I am back.
I chomp into the wheat toast sandwiching layers of fried egg and bacon curls, chewing to exorcise the barium chalk coating my mouth. There is a trace of flavor in the bite. My reflection in the butter knife shows a patchy return of baby buds on my tongue. What I lack in taste, though, is mitigated by the sensation of the sandwich's texture. The combination of crusty toast and crunchy bacon congealed by the precisely cooked egg commingles in my mouth like a revelation. I am deliriously happy. I can taste it, or some if it; I'm not sure. And I don't care. Whether I will ever again feel food settling in my stomach is unknown. But if I can't much taste ever again, I will go forward feeling the food in my mouth. And over time texture will become taste. I slow to savor the sandwich, sipping orange juice like a baby, smiling at passersby, and disturbing the poor guy sitting next to me, absorbed in his Kindle, to announce that this sandwich is the best thing that's ever happened to me.
"Oh, yeah," he says, smiling indulgently. "You should try the meat loaf."
