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This Is My Body by April Vázquez (Nonfiction Winner)

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April Vázquez is the winner of the William Van Dyke Short Story Prize and a Best of the Net, Orison Anthology award, and two-time Pushcart Prize nominee. Some of her writing can be found at https://aprilvazquez.wordpress.com.

“This Is My Body” is the nonfiction winner of the 2018 Prose & Poetry Contest, selected by Alex Lemon.

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During my junior year of college, I was thumbing through a women’s magazine at the dentist’s office when I came across a love quiz containing the following question: “You know you’re in love with him because…”

A) you can’t stop thinking about sex with him.

B) you never think about sex with him.

I don’t remember the C and D options, if there were any, but I’ll never forget B: You never think about sex with him. B was a revelation, evidence that other people—at least one other person—felt, as I did, that sex was something best separated from love. The B option was such an epiphany that I surreptitiously tore the page out of the magazine, folded it up, and sneaked it into my bag to show a friend: Look! It’s not just me!

Of course, it wasn’t just me (or, for the love of grammar, I). The idea of a separation between the body (sex machine) and soul (seat of love-with-a-capital-L) goes back to the dualism of Plato and forms the basis for Christian philosophy after Saint Augustine, who, like most of the saints, became a celibate when he converted. Some carried this idea to its logical, if perverse, conclusion: the Albigensian heresy taught that the body was so loathsome that we all ought to off ourselves tout suite. My ambivalence about the body had been palavered, in various forms, by thinkers from René Descartes to Alexander Pope. Just a few years ago, a Dutch study occasioned the sensational headline, “Sexual Arousal Overrides Disgust in Women.” Of course it does; otherwise we’d never do it. But I didn’t know any of this at the time.

Not that I wasn’t engaging in sex during those years. Once I’d sloughed off the high school sweetheart who followed me from our hometown of Shelby, North Carolina, to Asheville for college, I spent a few months going through boyfriends with Taylor Swift-like… well, swiftness. But, without creed or moral instruction, having been raised for the most part without religion, I had, on my own, come to see the body as something at best superfluous and at worst shameful, especially when it came to matters of a Higher Order. Love, I suspected—at least the pure, true love of Jane Austen novels—not only did not require the body; in order for such love to exist, the body had to be positively eschewed.

Accordingly, the opposite sex could be neatly divided into two broad categories: guys I could go to bed with, and guys I could respect. 

.  .  .

My mother’s body was the central fact of my childhood.

My mother dominated my life: her moods, her whims, her voluminous flesh. VICKI’S KITCHEN, one of her fridge magnets read, but it wasn’t just Vicki’s kitchen, it was Vicki’s whole house. Vicki’s block. Vicki’s town. There was too much of my mother; she took up all the space and air in any room she was in. She stumped around the house, sometimes in her underwear, sometimes stark naked, her great mounds of flesh wobbling, belching and farting and shouting and blowing her nose. She was like the subject of a Fernando Botero painting, a clay fertility figurine come to life: exaggerated curves, drooping breasts, flabby thighs tapering into incongruously thin girlish ankles. At the center of it all, a triangle of thick black fur.

Like Tereza in The Unbearable Lightness of Being, whose nightmares are haunted by naked middle-aged ladies, I felt vicarious shame at my mother’s uncouthness. She repelled me: her smells, her hyper-physicality, the great mass of her too, too solid flesh.

Other people’s mothers were thin and prim, or at best plump, rounded off in a soft matronly way. They worked—when they worked at all—as church secretaries and school teachers and bank tellers. They drove smart little compact cars and cooked meals to which the family sat down together and said grace. They didn’t work in a rug factory and drive a rusty pick-up and tell you when they were on the rag and never cook, much less say grace. 

.  .  .

The English word “body,” already in use by the Middle Ages, descends from the Old English bodig, which has a cognate in the Old High German botah (body, trunk). 

In the Romance languages, the word has come down from Latin (corpus) relatively unscathed. In language after language, it echoes the original: cuerpo, corpo, corps. English has also maintained this lineage in words like corporation and corpulent

And corpse. It’s hard to think of the body without being reminded of its eventual fate.

.  .  .

I suspected that my body was different from others’ for a long time before I knew why. From my early twenties (perhaps even earlier, and I just don’t remember it), I suffered from strange, quirky symptoms: intermittent numbness in my hands, a heart arrhythmia that came and went with no discernible cause, eye problems. I knew in a vague way that there was something unusual about my body, but as it was the only body I had, I couldn’t make any meaningful comparison between it and the bodies of others. 

As I drafted this essay, I was tempted to quip, “It’s not like your body comes with an owner’s manual,” but in fact there is such a book. You: The Owner’s Manual, by Dr. Michael Roizen and TV’s Dr. Oz, gives a play-by-play of the body’s vital and intricate processes in language that’s accessible even to lit majors like myself. I read the book with avid interest a few years ago. 

Unfortunately, amid the more than 400 pages of text, the term multiple sclerosis appears only once, a throwaway reference to the vast preponderance of things that can, and do, go wrong with the human body.

.  .  .

At least I’m not as fat as that woman, my mother would say, pointing to women on the beach or in restaurants or department stores. She’d pick the fattest women she could find, morbidly obese women whose abundant flesh stretched at the seams of their clothing, women who waddled rather than walked. Women who weighed even more than she did.

Still, you could hear the faintly plaintive note in my mother’s voice, the uncertainty. You knew she was trying to convince herself. 

.  .  .

The summer I was eleven, for the first time in my life, I put on a little extra weight. Having always been tall and thin, the thought had never occurred to me that one day I might turn out to be anything but. 

What stands out most from that summer is the way my mother mocked me, poking at my little stomach and calling me fatty. The weight gain was perfectly understandable, from the vantage point of today. I was on the cusp of puberty, with all its accompanying changes, and I was out of school and eating my mother’s idea of food at every meal: sugary cereal, to which we added even more sugar from a Tupperware container in the pantry, microwave pizzas, fast food burgers and fries. Unsupervised, my brother and I spent most of the day in front of the TV, eating. There was no recess like during the school year, and no balance of home-cooked lunches (my elementary school cafeteria was manned—womaned?—by sweet old Southern grandmas in hairnets whose green beans and okra and broccoli casserole rivaled those of my own sweet old Southern grandmas). It was reasonable, under the circumstances, that I should have put on a few pounds. But my response at the time was near panic. 

For the first time in my life, there was more of my body than there ought to have been, and it terrified me. I pictured myself not being able to stop the trend, getting fatter and fatter until I spiraled into eventual, inevitable obesity. 

I pictured myself turning into my mother.

The weight gain that had occasioned her glee melted away as soon as I went back to school in the fall. At fifteen I took matters into my own hands and became a vegetarian, then, a few years later, a vegan. As an adult, I shopped in health food stores and signed up for weekly grocery deliveries from the local farmers’ co-op. I followed Michael Pollen’s food rules: eat real food (not too much), nothing processed, mostly vegetables. My children have never once eaten at McDonald’s or Burger King or Wendy’s or Chick-fil-A. They’ve never tried soda or frozen burritos or boxed meals or canned meat or breakfast cereals that could double as a dessert. They’ve never tasted any of the non-food that I grew up on.

Today I eat the Wahls Protocol diet: leafy greens, sulfur veggies like broccoli and cabbage, and other colorful veggies every day. 

Today I’m 5’6” and weigh one hundred pounds.

.  .  .

As a child, my body was not my own. It belonged to my parents, who not only fed and dressed it, but, frequently, did it harm. My punishments were not just corporal but savage, meted out according to their caprices rather than in correlation to my supposed misbehavior. They hit me, slapped me, beat me with belts and switches, screamed and raged and terrorized. There was nowhere to hide, no one to save me from their wrath. It didn’t matter that I was a straight-A overachiever, shy, self-effacing, and dying to please. It was never enough. I was resented, a hinderance. They hated me. I know, because she told me so.

I look at pictures of myself then, so blonde and small, and can’t imagine what there was about me that could have provoked such violence from two full-grown adults.

When my brother came along, headstrong and ill-tempered from the get-go, my parents gave up. They let him tell them what he was going to do, what he was going to eat and wear, whether or not he’d clean his room or have Sunday dinner with my grandmother or even, eventually, get up and go to school. They made me placate him, whatever that required, because the alternative was to listen to him storm and rage and threaten.

In short, my parents had met their match.

My brother had run-ins with authority figures as early as kindergarten. He sold his Christmas presents, bullied other kids, smoked and swore and laughed in the teachers’ faces. Eventually, much to the faculty’s relief, he dropped out of high school altogether, then out of community college, where he lasted less than a semester. Today he lives in a trailer in the woods, from which he deals drugs. His younger son got into trouble at school when he told his classmates that only stupid people believe in God, a dogma his father preaches with fervor. My brother hasn’t worked for close to a decade. He feels oppressed by powerful shadow groups of Jews and liberals, and by the government that feeds and provides medical care to his two children. 

For me, my brother was an education. Perhaps if I had only been forceful like him, demanding, belligerent, I needn’t have suffered at my parents’ hands. The last time my mother attacked me, I was sixteen years old. I had braided my hair all over like a girl I saw in a Cure video—a cool English girl standing in line outside the concert venue—and when my mother saw me leaving the house, she flew into a rage, shouted that I looked like a nigger, and began ripping the braids loose. Even then, at sixteen, I didn’t fight back. 

The last time I stayed with my parents, my mother began to rant and rave on Easter morning because I put the oatmeal, still warm, into the refrigerator. This, she claimed, would cause the fridge to work harder, thereby raising the power bill. “But you don’t give a damn because you don’t pay the bills!” she screamed at me in front of my children as we tried to get out the door for Easter Mass. It didn’t matter that I’m now in my early forties and have lived on my own for a quarter century; my visceral first response to my mother’s rage was fear. If she had physically attacked me at that moment, I would have let her. There would have been nothing I could do about it.

It’s like when I used to come home crying because Jason on the backstreet had hurt me again. My dad would shout at me, “Just punch him in the nose! Then he’ll leave you alone.”

But I couldn’t punch Jason in the nose. If I could have, I wouldn’t have needed my father.

.  .  .

Another thing my parents did with my body was to leave it in strange people’s houses for them to deal with. Because of their odd work hours—first shift for a week, second shift the next, nights the following, then five days off—my parents had a hard time finding anyone who’d take me. Those who did needed money more than they needed order in their homes. Like my mother, these Agneses and Thelmas weren’t the right kind of women. They ate Spam and liver mush and had roach motels in the kitchen and mismatched living room furniture and sheet sets. At least one was certifiably mentally ill. 

Today I look at my three-year-old and think how, when I was her age, I was dragged out of bed at night and taken to a stranger’s house, where I’d wake up, still wrapped in my blanket from home, uncertain how I came to be there. How different my little Dahlia’s life is from mine. How proud I am of that fact. 

.  .  .

My initiation to sex came in the form of my father’s pornography. My parents, careless with his collection of VHS tapes—most of them copied from XXX satellite channels—and her sex toys (nightstand by the bed, bottom drawer), left these things close enough at hand that my brother and I had no trouble availing ourselves of them for thorough inspection. By fifth grade I not only knew the mechanics of the sex act, I had seen dozens of naked bodies twisted into contorted shapes, women with two and three penises in them at a time, women upside down in pile drivers being ravished by men who stepped on their necks and slapped and spat on them. Women, always with their eyes wide open, moaning or gagging or saying no or begging for more.

A friend of mine, the father of a fifth-grader, recently told me how he ushered his son August outside during a dinner with the extended family when the conversation turned to Brett Kavanaugh’s Supreme Court confirmation. 

“I don’t want my son to know about rape before he knows about sex,” my friend told me wearily. 

What a luxury, I thought, to know about sex before knowing about rape.

.  .  .

Incidentally, my own older daughters—one a few months older than August, the other almost a year younger—already know about both sex and rape. They learned about sex, beginning years ago, from an assortment of age-appropriate books with innocuous titles like It’s So Amazing! and The Body Book for Girls. I doubt the two of them even remember a time when they didn’t have at least a rudimentary understanding of the biological process of reproduction. There were simply facts at hand on the subject, alongside the other facts they were absorbing, like which dinosaurs ate what and how many Rhode Islands would fit in Texas.

Rape is a more recent addition.

Daisy, my eleven-year-old, asked me not long ago if there’s more to know about sex than what she’s learned, and I told her I think she’s pretty well got it. While technically true, this answer is a gross oversimplification: Daisy doesn’t know about S&M or bestiality or fisting or child pornography or snuff films. She’s never heard words like cock and cunt

Pussy she learned from the current president.

.  .  .

I was standing in line for a ride at the county fair in sixth grade when the couple in line ahead of me caught my attention. They were thirty-somethings, attractive, well-dressed for the bumpkinish backwater of Shelby, and, I couldn’t help noticing, unable to keep their hands off each other. 

When he noticed me staring, the man turned around and explained, “We haven’t seen each other for a long time. We’re really horny.” The woman giggled madly.

Horny. It was a sour word, one that until then I’d only heard from the swaggering jackasses at school, boys who shouted “Geronimo!” when they kicked the kick-ball and sported rat-tails in their feathered hair. It seemed out of place in an adult’s vocabulary, incongruous.

Apart from the total inappropriateness of the man’s having said this to me—I was tall for my age, and always mature among my classmates, but I was still a twelve-year-old kid—his statement itself was startling. It worked on my mind for days afterward. In the end I decided that his wanting to do the things I’d seen in my father’s movies to the woman was not so surprising. The surprising part was that she wanted it too.

.  .  .

I married my first husband a few weeks after my college graduation, not for any of the conventional reasons (love, a desire for children, the satisfaction of having made a good match). He was the last person I should have married, and I knew it. That’s why I married him.

Like Nikolai Stavrogin in Dostoevsky’s The Possessed, who marries a feeble-minded, physically disabled old woman to show his contempt for the institution, I saw my marriage as a statement against marriage. It was a refusal to believe in any such thing as a relationship that unites the mind and body in the purest and best of ways. 

Rand (needless to say, not his real name) was nine years older, a person I’d known for only a few months, someone with no education, no money, no prospects, and no future. When I met him, he had neither a job nor a place to live; he was sleeping on sofas amongst the rag-tag, heroin-infested hipster community of Asheville, trying to decide whether or not to hitchhike his way back to San Francisco. The only thing he had to recommend him, his single stand-out quality, was that he wanted to marry me.

So, one late summer Saturday in the Blue Ridge Mountains—me in a consignment shop dress with Doc Martens underneath and him in a second-hand Pee-wee Herman suit—we drove to a little touristy chapel in Gatlinburg, Tennessee, and tied the knot. 

We spent the entire ceremony, such as it was, laughing. “Marriage is a serious matter,” the beleaguered old pastor scolded in the voice of an assistant principal. We were just managing to tamp it down when he called Rand the wrong name—not just any name, but an objectively funny name (Burt)—and our laughter burst out again, mine of that hysterical variety that borders on crying. There was no one there, no guests, no witnesses. I told my parents after the fact.

My year-and-a-half marriage to Rand was a statement of total nihilistic defeat, something along the lines of: If marriage is bullshit anyway, I might as well marry him. 

In any case, the sex was good.

.  .  .

My parents are not believers. Though their respective mothers took them to church as children, what they heard there seems not to have stuck, like John Barth’s character in Lost in the Funhouse, whose Boy Scout oath “didn’t take.” 

The last time I saw him, my father spent half an hour trying to convince my preteen daughters that there is no God and that the missing link is alien DNA spliced with that of Neanderthals, something he learned from the television program Ancient Aliens.

.  .  .

My childhood was riddled with men’s and boys’ inappropriate physical acts. Derek across the street peed on me. Jason hit me regularly, sometimes hard enough to bruise. A teenaged cousin showed me pornographic images when I was seven. A friend’s single dad talked openly about sex, which he called “bonking.” My own father switched my legs till they bled. A male teacher at the local high school was fired for an affair with a female student. A counselor at the psychiatric hospital where my parents had me committed at age fifteen groped me as he “tucked me in” to bed. 

In the way of children, I took all this as normal. 

The strange thing is that my mother did too. She said as much once, years later, when I speculated that there may have been other abuse, sexual abuse that I couldn’t remember either because I was too young or because I had blocked it out. All those nights spent at strange people’s houses, sometimes in their beds with them. The different babysitters, with their contingent sons and husbands. My mother pooh-poohed the possibility. When I mentioned being afraid of the older cousin who showed me the dirty pictures, she came back with, “When I was little, Uncle Arthur sat me on his lap and pulled out his penis for me to touch. That’s how guys are. It’s like, a curiosity thing; it’s the way you learn about all that.”

I don’t take so cavalier a view. My daughters don’t do sleepovers. They’ve never been subjected to corporal punishment. When an older cousin (a girl) pulled down my four-year-old’s pants and pretended to smack her behind through her panties, I told my husband that Stefani would not be coming back to our house to play. 

She hasn’t been back.

I see my daughters’ bodies as inviolable, and worth protecting. 

.  .  .

Like C.S. Lewis, I find the Bible’s insistence on Christ’s body worth pausing over. After the resurrection, Jesus didn’t appear to His followers in an ethereal, insubstantial form; rather, He came in the flesh, drawing particular attention to His very real physical body. Put your finger into the holes in my palms, He told Thomas. Touch the wound in my side

Lewis says this is one of the ways we can tell that humans didn’t create the story: people would have made the risen Jesus a purely spiritual, otherworldly being. They wouldn’t have had Him sit down and eat baked fish.

.  .  .

These days I spend a lot of time thinking about my body. The first thing I do when I wake up in the morning is to log the night’s symptoms in a Word document, and the last thing I do at night is log the day’s. Here’s yesterday’s entry:

Difficulty swallowing (bad); numbness in middle of back (brief); neck pain generally and sharp pain in R side of neck (3x); muscle spasms (L leg, R abdomen, R forearm); sharp pain in jaw (brief); ears ringing (night only)

It’s been six months since I was diagnosed with multiple sclerosis, and on most days the log demonstrates neither improvement nor progression of the disease. I have different symptoms, sometimes one, sometimes another, but generally around the same number and at about the same level of intensity, with an exceptionally good or bad day thrown in here and there for good measure. 

My diagnosis came on a Monday. By Tuesday I had adopted the Wahls Protocol anti-immune diet: no dairy, no grains, no sugar or other sweeteners, no eggs, no nuts (unless soaked for twenty-four hours until sprouted), no legumes, and very little fruit. Those foods are replaced by loads of fresh—raw when possible—vegetables and greens, grass-fed beef, free-range chicken, wild game, seaweed, and vitamin supplements. The more organic fare, the better.

In the accounts of MS sufferers that I read online, I see a wide range of possible progressions of my disease: from completely asymptomatic to wheelchair-bound, blind, and fed by a tube, and everything in between. I pore over the most promising accounts, some of them by Wahls adherents who, like Dr. Wahls herself, have spent years in remission. I seek out these happily-ever-afters the way a hopeful agnostic reads about near-death experiences, searching for something I can believe in, some certainty about the murky future that awaits me. 

I had hoped to see improvement by this milestone, the six-month mark, but I haven’t. I’m maintaining, that’s all I can say.

I don’t seek out only the best-case scenarios, though. I wallow in the worst ones too, doing my own version of my mother’s comparisons: At least I’m not as sick as that woman.

.  .  .

My older girls and I sometimes play a game over the dinner table that we call Would You Rather…? in which we discuss preferences and possibilities. Would you rather eat A) a snail or B) a slug? Would you rather be in A) a zombie apocalypse or B) a tsunami? Would you rather A) walk through a cave full of rabies-infested bats or B) swim in a pool full of bull sharks? 

Most of these scenarios are grim, catastrophic. It’s hard to choose, because either option is bad. 

My own real-life Would You Rather has three possible outcomes. I could end up A) in a wheelchair, B) blind, or C) unable to eat without a feeding tube. I could also end up with any combination of these, or, if I’m particularly unlucky, D) all of the above.

My path bears signs that point to all of these potential endpoints. I often have trouble swallowing, getting “strangled,” as my grandmother used to call it, on liquids, coughing and sputtering when my drink goes down the wrong way. Or food gets stuck in my esophagus, at a point lower than my throat, between my neck and my stomach. I don’t have trouble breathing, but it’s still a terrifying feeling, one that makes me chug water in a desperate attempt to wash it down. So far I’ve been able to, though it once took four glasses of water.

My legs sometimes give me trouble, especially the left one, which feels sluggish and unwieldy. I can’t sit for longer than a couple of hours at a time without pain. I make it a point to hit the elliptical every day; use it or lose it, the saying goes, in this case literally.

I have constant spots and blank spaces in my vision, and my left eye sometimes gets blurry for several minutes at a time. Twice I’ve lost sight in that eye altogether. 

MS doesn’t kill you directly. Rather, because it makes your body not work properly, it’s easier for other things to kill you: respiratory conditions like pneumonia, blood clots, infections from bed sores. MS gives you a slow death, after years or decades of suffering. 

As to whether I’d rather go blind, not walk, or be fed by a tube, that’s a question I can’t answer. It isn’t my choice to make, and if it were, I’d pick option E) none of the above.

.  .  .

With my own children, I’m the anti-Vicki. I tend their bodies gently, never missing a chance to hug and kiss them, to tell them I love them. I breastfed all of them, sometimes long past the doctors’ recommended timeframe. I left a teaching job I enjoyed to raise and homeschool them. We eat meals together—meals I cook—at which I read aloud, first from The Book of Common Prayer, then from novels (currently Agatha Christie’s Hallowe’en Party, about which none of us can guess whodunit). Dahlia, who’s prone to febrile seizures, still sleeps in the bed with me; she won’t go to sleep unless our heads are touching. I call her “the baby” though she’s three. I wipe tears, bless sneezes, and write each of them a monthly letter, begun in pregnancy, in which I detail their exploits for posterity. 

I’ve been told—including by Vicki herself—that I go too far with my mothering. I’ve been accused of hovering, smothering, overprotecting. When my older daughters were small and I’d hold them tight to me, breathing in their scent, not letting them go, they’d fidget and roll their eyes or sigh dramatically, long-sufferingly. Now they’re old enough not to do these things. They tolerate me, maybe even pity me a little.

I’m not offended. I’m glad they have me to take for granted.  

And I can live with being overprotective. It’s better than the alternative.

.  .  .

Because I couldn’t get an accurate diagnosis in Mexico, where I live (notwithstanding the panoply of specialists I consulted, including a prominent neurologist at the city’s top hospital), I happened to be staying with my parents in the United States when I was diagnosed with MS. My mother, to whom my body had never meant much, remained convinced that there was nothing wrong with me. “That bunch” at the neurologist’s office, she announced scornfully, were mistaken. She herself has symptoms like mine, she told me; her ears ring from time to time, and everyone has muscle spasms. As usual, I was making a big deal out of nothing. Her version of me as a high-strung, overwrought hypochondriac was one I recognized from my childhood, when I was almost always sick.

When the results from the EEG came back, the summary report read: “This 96-hour awake and asleep video EEG is consistent with an abnormality in the left temporal lobe. This places the patient at risk for Focal Epilepsy.” I laid the packet of papers on the dining table, but, since my mother didn’t ask, I didn’t mention the results, or how the neurologist called me in for an urgent appointment last thing on a Friday so she could start me on anticonvulsive meds (I opted for CBD oil instead and, thankfully, remain seizure-free). 

No longer able to deny there was anything wrong with me, my mother took a different tack, pointing out examples of women she knows of who have MS but whose lives, she blithely assured me, are completely unaffected by the disease. Terri’s sister’s had it for years, and she’s fine. Trish’s friend has it, and if she didn’t tell you something was wrong with her, you’d never know. 

I’m happy for these women—if in fact their physical and emotional well-being has been so unaffected by an incurable degenerative disease for which even the most effective treatments work only in a fraction of cases and often carry horrendous side effects—though I suspect that the reality involves some degree of suffering in silence on their part. But I also know that, coming from my mother’s lips, their stories were not words of encouragement. They were a way of minimizing my suffering, of minimizing me

Like always.

.  .  .

I developed a fear of death rather late in life. Until I was forty, I entertained the naive position that, because all other natural bodily processes are relatively pleasant, death must be too. Eating, drinking, having sex, going to the bathroom, even sneezing—everything we have to do—feels pretty good. Death, I reasoned, must work the same way. There may be some preliminary unpleasantness, but the act itself would be more or less akin to the time I fainted in band class, when I felt as if I were sinking into bed for a delicious, long-awaited sleep.

Non-medicated childbirth disabused me completely and for all time of this absurd notion. 

“I can’t do it,” I moaned, though by the time I realized this, it was too late for the epidural and I had no choice. The nurse held my hand and wiped the sweat from my forehead as, ravaged by excruciating, unrelenting, and even now indescribable pain, I gasped out, “It’s too much. It’s too much.”

.  .  .

When, in my late twenties, I became a Catholic, it was an act of supreme rebellion. I embraced, in my parents’ estimation, a level of craziness and superstition best suited to the dark ages. Saints subsisting on nothing but the Host for decades, apparitions of the Virgin Mary, communication with the dead, the Real Presence of Jesus in the Eucharist.

This last one, the “hard teaching” that Jesus’s followers must eat His flesh and drink His blood, is high on my parents’ list. It’s not only weird but repulsive, embarrassing, a throwback to the ritual theophagy of primitive pagans. Yet Jesus insisted, “My flesh is real food and my blood is real drink. The one who feeds on me will live because of me,” and Catholic doctrine insists that this is not a figure of speech, a symbol. “This is my body, broken for you,” He told His followers. This IS my body.

I believe in transubstantiation, but the fact remains that I can’t take Holy Communion because I can’t eat gluten.

.  .  .

Somerset Maugham rather querulously argued, “No more stupid apology for pain has ever been devised than that it elevates.” Since pain is nothing more than a collection of nerve signals issuing a warning, he maintained, it would be just as reasonable to assert that a danger signal elevates a train as to claim that the human soul can be in any way improved by suffering. The novelist goes further with his thesis: not only does pain not elevate, it degrades. People who live with chronic pain become self-absorbed, impatient, greedy, and unjust. Maugham, an atheist, saw the spiritual elevation argument as nothing more than a ruse devised by Christians to justify pain.

In contrast, and in keeping with her Catholic faith, Flannery O’Connor saw sickness before death as “a very appropriate thing” and said that “those who don’t have it miss one of God’s mercies.” She invoked Teilhard de Chardin’s concept of passive diminishments, the physical and metaphysical afflictions one can’t escape, to address the true work and creative action of life: to prepare for death. 

O’Connor knew a little something about the subject; she suffered from lupus for a third of her life before it finally killed her.

.  .  .

Today I no longer have any communication with my family. When I returned to Mexico after my diagnosis, I asked my parents not to contact me again. My brother, whom I already hadn’t seen in years, didn’t require any such measures. I used to email the members of his family every year on their birthdays, but since I never received any reply, with him I had already given up.

My parents have complied with my wishes, and I don’t expect to hear from them again. My father went several months without speaking to me once before when I called him out on something from my childhood, so I’m well acquainted with his capacity for holding a grudge. This time I made no recriminations, aired no grievances. The time for that is past, if there ever was one. 

I suspect that, like me, my parents are just relieved it’s over.

.  .  .

I don’t want to accept that Somerset Maugham’s view of pain could be the right one. If I have to suffer, I’d rather believe it’s edifying, redemptive, even if only on a cosmic scale that I don’t at present understand. But I confess that there are times when what I want more than anything is to be able to swallow and walk and see again without difficulty. The spirit is willing, but the flesh is weak.

I’m working on it.

I’m not gasping, It’s too much. Not yet. These, I know, may very well be the salad days. My symptoms are more bothersome than catastrophic right now. The worst thing about them is what they portend.

Still, like the ancient humans afflicted with that most dire of Pandora’s plagues, I cling to hope: I may never get any worse, I may have a full remission, or at least a greatly slowed progression. And in the final analysis, my flesh is only going the way of all flesh. “Mere oblivion, sans teeth, sans eyes, sans taste, sans everything” awaits all of us who don’t die first; my process just began earlier than most. If nothing else, my body is a constant memento mori, a reminder to be good, for time is short. 

Whatever awaits me between here and the grave, I have to take my passive diminishments as they come. For good or ill, this is my body. It’s the only one I’ve got.