I think that with very important things we do not overcome our obstacles. We look at them fixedly for as long as is necessary until, if they are due to the powers of allusion, they disappear. – Simone Weil, from her letters


In the opening sequence of the latest X-Men movie, a young boy, Erik, is asked to move a coin across a table before the count of three or his mother will be shot. It is Poland, 1944, and Erik’s mother, emaciated and terrified and brutalized, tries to calm her son as he attempts to save her life. The ruthless Sebastian Shaw (Kevin Bacon speaking in German!) begins the countdown. Erik concentrates, his face contorted, fingers trembling, watching the gun, then the unmoving coin, glancing over his shoulder at his mother, who tries in vain to reassure him (“everything is okay,” she repeats, mother to the last, knowing that they’ll both lose this battle). Erik tries desperately to use an extraordinary and unexplainable gift that the Nazis discovered during the liquidation of the Jewish ghetto, when he bent an iron gate as his parents were being dragged away. He cannot do it; the stress is too great. He fails the test and Shaw shoots his mother in the heart.

This experience unleashes Erik’s power. In that fuselage of pain and rage and sadness, screaming, crying, he lifts his thin hands: lamps break into pieces and metal helmets fuse to the heads of the guards standing over his dead mother. He shatters the glass window between the office and the “experiment” room, full of metal probes and leather straps and other shining instruments of torture that Shaw has used to try to manipulate the secrets of Erik’s remarkable abilities, culminating in this final, impossible test. Sebastian, however, is thrilled to see the havoc his protégé is capable of when pushed to the edge, and he slips his hand into Erik’s and happily observes that pain and anger will “unlock his gift.” He might have instead said a single word to explain such a violent, full-body feeling that is pain + anger + tortured sadness = grief. In that moment (although we witness its effects much later; we paid to see an action movie and we get one!) Magneto – a man distrustful of a world that wants to squash difference, manipulate it, abuse it and destroy it, wherever it might manifest itself – the man Erik becomes, is born.

If theology is a fusion of history, literature, and philosophy (which is why I have spent years of my life studying it, both with and then without faith), then grief is the fusion of sadness, rage, and helplessness. Here, in this blockbuster movie that grossed millions on its opening weekend and is adored by teenage boys around the world, I found a visual manifestation of a powerful truth about grief: that it fucks things up, and not just inanimate objects like chairs and tables and tools, but people too. Their hearts. It, quite literally, ruins. Feeling as though I’d been punched in the gut, I fought back tears for the next hour and a half. I kept seeing that boy screaming No, a primal, grief-stricken howl, as he makes chairs clash together and metal crumple and knives fly while his mother is lying on the ground behind him, dead, shot, gone. I feel like I know, in some way, what Erik/Magneto is about, what makes his mutant mind tick. To my disappointment and surprise, I’m on his side for the rest of the movie. And believe me, there are sides, although they’re not as simplistic as one might expect from a comic book film. The moral nuance of the movie is made even more complicated and interesting when seen through the thought prism of the odd and brilliant Simone Weil, who blazed a brave moral path all her own before her death at the age of 34, and who observed, in her essay, “The Love of God and Affliction,” that “At the very best, he who is branded by affliction will keep only half his soul.” We see Erik struggle to keep that half intact for the rest of the movie.

The X-Men is a franchise of course, and this installment sets the stage for future epic conflicts between Magneto and Professor X, so there are plenty of exploding buildings and special effects, but beneath all that the film offers some deep meditations on difference, on ability, on friendship, on what it feels like to be labeled and set apart. The characters reveal ways in which our outsider experiences, our early wounds, do not disappear; in fact they never leave us. The residue from these narratives affects our moral choices to the point of altering our understanding of what choices we actually have, and sometimes even ferreting this out is a struggle. Weil again: “As for those who have been struck by one of those blows that leave a being struggling on the ground like a half-crushed worm, they have no words to express what is happening to them.” In other words, definitions of “moral universe” are as diverse as ladders of DNA. It’s hard to think clearly when someone is trying to crush you.

And so I didn’t get what I expected: a two-hour brain drain and a chance to drool over Michael Fassbender and James McAvoy. Instead the film gave me an unwelcome plunge into memory, like getting dunked in the bucket of water at the carnival when somebody manages to hit the right button and send you under. If a telepath would have read my mind during those one hundred or so minutes, this is what he or she would have seen:

The first time I stripped down in front of medical residents at the Children’s Hospital in my underwear so they could examine, precisely, the way my artificial leg fit against my hip as I trotted down the hallway in my open-back robe. I was six. My parents and I went for pizza afterward, but I had lost my appetite. My congenital deformity, my fluke, my genetic mutation, my crappy luck, made me an interesting specimen, an object for medical inquiry. I was not a girl, or even a person, but a thing, and, by medical definition, an unfortunate, abnormal one. I understood, in an unspoken way, that the body was a problem and, in this case at least, it could only be partially solved.

Thirty years later, I’ve written a book about disability, I think I’ve purged that demon, and I’m sitting with my son in the lobby of the doctor’s office, my son with “low tone,” the pediatrician has warned, but still a perfect-looking baby boy who, at nine months, has not met his milestones, worried, so worried. Less than twenty minutes later, after Ronan passes the “fixation” exam, the doctor looks into his eyes with a bright light and says “Oh boy,” announcing that this never happens, it is so rare, I’m so sorry, I can’t believe it but it has happened. My son has Tay-Sachs disease, he will die before he’s three and there is no treatment, no cure, and the doctor knows this because he’s seen the “cherry red spots” at the back of Ronan’s retinas, the definitive marker of the disease, a disease I was tested for, even though, as the bonehead genetic counselor at Cedars-Sinai Hospital in Los Angeles said, “You don’t need it; you don’t look Jewish.” I was tested, I was tested I scream at the eye doctor, wailing, crumpling, pissing my pants, feeling, in no uncertain terms the void the void, but it turns out that the prenatal test only detects 9 “common” mutations, not all 100+. In order for me to have found my mutation, in order for me to have made sure that my son would not be like me, a medical “fluke,” a genetic “accident,” (“I don’t want another me,” I told my husband when we got pregnant), I would have needed my DNA sequenced, an expensive process that I never would have thought to request and that would have been discouraged, both by doctors and the insurance company. All along I thought the problem was physical, not internal, that what made me different could not be passed down. I was wrong. Now Ronan does the rounds of neurologists and geneticists and specialists who look at him the way doctors once looked at me: this baby is different, of a different kind. Not one of us.

Once, while I was being patted down by a TSA agent in an American airport I’ve since forgotten, he said, “I’ve never seen one like you before.” During a “private screening” at an obscure African airport, I was asked to remove my pants as, one by one, the security agents touched my leg, quickly, with just the tip of a finger, as if they might get an electric shock (if only!). Only one doctor in New Mexico has seen a Tay-Sachs baby before Ronan. I will not be surprised if one morning when I pluck Ronan from this crib he will have sprouted a horn from the middle of his head, wings from his back, maybe a tail. Ronan and other babies like him are, in every way, set apart – magical beings, indeed like unicorns, but without the mythical powers. When he’s in my lap I often remember that line from my favorite movie version of Jane Eyre when Rochester exclaims, “Jane, you rare, unearthly creature!” Ronan is weird, like Erik, and like Erik’s counterpart and friend, Charles Xavier, although the latter’s back story is wildly different.

In Westchester, New York, a boy wakes in the middle of the night to find a blue girl disguised as his mother foraging for food in his kitchen. This young telepath reads her mind and politely extends his hand, promising, “you never have to be alone again.” This is Charles Xavier (pronounced Ex-avier), child of wealth, buoyant optimist (“I always knew I couldn’t be the only one,” he chirps to his new blue buddy) and loyal friend who grows up to be a renowned Oxford-educated professor  – THE Professor X, in fact, although he, like Erik, must grow into his adult name. A brilliant expert on genetic mutation (played by the ever-luminous James McAvoy), Charles chats up girls in pubs with beatnik inspired pick-up lines like “your mutation is groovy.” He can read minds, influence actions and even erase memories, but he looks “normal,” and every privilege is afforded him as he moves freely through the world. The blue girl, Raven, becomes his Oxfordshire sidekick, masquerading as a co-ed hottie with a cherubic face and long blond hair. Charles believes in assimilation, in mutants and humans living together. He is “mutant and proud” but he doesn’t want to rock the boat too much. When Raven changes her eye color in a bar he ignores a booty call and annoyed, promptly drags her back to their damp flat where he announces that he must study. Why should he reject the world? Why not find a way to live in it? The boat has always worked in his favor, sailing him to happy shores and an uber-comfortable if slightly complicated life.

But there’s a toughness to Charles; he’s not all mutant Pollyandy. He risks his life for other mutants, for the community he believes in and, in fact, is quite proud of, despite his beliefs in working with less-evolved humans toward the greater goal of goodness in the world, and despite his very simplistic view (at least at the beginning of the film) of what constitutes goodness in the first place. He thinks the group is good; he thinks the group will help others like him and provide roles for all mutants in the wider, “normal” world. He meets Erik for the first time when he dives into the ocean to save him (played now by a chiseled and unrelentingly angry Michael Fassbender). It helps that both men can act with their eyes, but the emotional resonance, bro-mantic as it is, of one man taking the hand of another under water and saying (telepathically, but still), come with us, you are one of us, calm your mind, you are not the only one, is not lost on me. Erik is shocked and surprised; all this time he thought he was an island far from any shore, isolated. At this point I was weeping into my popcorn. I thought of the ordination ceremony in the Lutheran tradition, when those who have witnessed the newly-minted pastor’s initiation put their hands on him or her as a way of saying you are one of us, look, we’re all around you, with you, you are surrounded, you belong. A gesture that, at its core, says do not despair.

You are one of us.

When I was in the seventh grade I went on a ski trip with a group of kids from the local evangelical church. Although at the time I would not have been able to articulate that my values or theological views differed (as in, they were the opposite) from these 20-odd people who prayed in circles, shouted in church (I grew up Lutheran; we did not shout, ever, and I found this unsettling, borderline horrifying), and began sentences with the very missionary-friendly statement we know these things are true before reciting a Biblical passage with slightly glazed-over eyes, I did still believe in Jesus, and I believed even more in the delights of skiing, which is how I ended up on the trip.

One night before the pre-dinner prayer circle, I stood in a group of nervous, giggling girls in our youth pastor’s motel room. Let’s call him Jeremy, because I don’t remember his name, but I do remember that he sat in the wooden chair that he’d pulled away from the rickety desk in the corner of the budget motel (Ever the morbid one, I thought of a chair one would stand on in a room as lonely as this in order to hang oneself, but I kept this to myself), and he was lecturing us about sex. Or basically, why we should, under no circumstances, be having it or even thinking about it, although there were some things he needed to tell us, so he’d deliberately gathered us all together in order to bring it (sex, that is) up. Snow tumbled past the windows – sharp flakes, and less than I’d hoped; the runs were rocky and icy, no powder at all. The heater hissed in the corner and the room was uncomfortably warm. As I stood in a line facing Jeremy and his words (a single-man morality firing squad), I wished I could walk to the other side of the room and press my forehead against the cold window glass. DON’T HAVE SEX UNTIL YOU ARE MARRIED he warned (and then, I guess, don’t enjoy it, but he certainly didn’t say that). We’d heard this before: from our parents, from our teachers, from our well-meaning friends – the purity/promise bracelets were just getting started in Nebraska in the late 80s – but Jeremy decided to make a point. He stood up from his chair. Boy-crazy and awestruck as we were by this man with the strong jaw and the broad shoulders and the college girlfriend who was still, he told us proudly, a virgin, we fell silent. Snow continued falling past the window. A cleaning cart rattled past the doorway along the concrete pathway outside, and a woman shouted manana! Nobody said a word. Without taking his eyes from our group, he gestured at the chair behind him.

“This chair is a symbol,” he intoned in his practiced, preacherly voice, ”when my wife and I make love for the first time, I’ll put a chair near the bed and say, ‘this is for Jesus. We waited, and he’s here to consecrate our love.’”

“Conse-what?” someone said. She was promptly elbowed by her neighbor.

Today’s hip teenagers might make jokes about the silly chair (“Jesus likes to watch?”), but we girls from farm towns and religious families weren’t experienced enough to make that joke, the odd sexualization of teenagers hadn’t yet permeated television and movies, and the internet, with all its pathways to pornography and other naughtiness, did not yet exist.

We waited obediently. “Okay, you can go,” he said, but as we filed out, he asked me to stay back for a moment. He waited for the last girl to leave; the door clicked shut behind her. I watched a bead of sweat on his forehead slip behind his ear. My right thigh hurt from skiing; my shoulders ached from gripping the outriggers, small skis attached to metal poles that clamped around my upper arms and allowed me to ski on one leg.

“Emily, I want to tell you something,” he said. I was sure he was going to confess his undying love for me, a feeling made more complicated by the fact that he smelled like my dad’s cologne, which eliminated him as an object of desire.

“My advice may not apply to you,” he said. My heart dropped into my stomach. Oh. My. God. Was he propositioning me for sex? Was he one of those predatorial teacher-priest-types I’d been warned about my whole young life but had never met? If so, I knew exactly what to do: scream, get away, tell a parent or another trusted adult. Or was he getting ready to consecrate something not with his sanctimonious girlfriend but with me?

“People don’t,” he began, looking past me toward the window. I looked with him. Someone wearing a red coat was sprinting through the snow. It was late afternoon, the sun was disappearing, and the sky was twilight engine-blue, the color of change and possibility. “Men…uh…boys…will have a difficult time with…with difference. So, you shouldn’t worry about what I just told you.” He stood up and put his hand on my shoulder. “You just live your life.”

Which, apparently, meant a sex-less one. Nobody would want to have sex with me. I wasn’t initially concerned – it was first kiss drama and the upcoming prom that loomed largest, but later, after yet another prayer circle (boooorrrinnng) and dinner and then lights out, I couldn’t sleep. Everyone knew about the artificial leg – I skied without it – but now I understood that there were larger ramifications for the rest of my life, including my sex-life, which I envisioned less as a life than a vague notion that terrified me but that I understood was linked to activities experienced by actual, living people who loved one another and desired one another, although desire was never a part of religious discussions about sex. We were told to desire God, to desire goodness and righteousness, without having the notion of desire unpacked in any way, and with goodness being defined solely as the other side of evil with no room for an impulse that might lie somewhere in the murky and unidentified middle. I lay under the covers feeling stripped, bare and exposed, in all my difference. In all my freakishness and deformity. Alone. The only thing that comforted me after Ronan’s diagnosis was the fact that his brain, as it slowly creeps back to a vegetative state, a kind of Alzheimer’s for babies, a slow unwind, will never develop enough for him to understand that he is different and that he is dying. He will never lie alone in bed, feeling like a lonely freak. He will sit on my lap and smile and play with the toys I hold out to him and he will not care about other’s opinions of him, including mine.

The CIA recruits Erik and Xavier to fight the good fight for America, and using Charles’s telepathic powers they convince others like them to join the world-saving fun. In one scene, the new mutant-recruits, all with various powers, sit in a room and “show off.” It’s the first time they’ve been able to reveal what makes them special: wings; the ability to spit fire; hands where the feet should be; a blue body that can take the shape of anyone else’s; an ability to adapt to any environment, even growing gills underwater spontaneously. “Watch this,” they say euphorically in turn, and everybody cheers to see what they can do. They feel truly evolved in this moment, special in the best sense. The moment sours when several CIA agents jeer at them through the window glass like ticket holders at a freak show, demanding to be wowed. (Rosemarie Garland Thomson wrote an amazing book of literary theory called Extraordinary Bodies that breaks down the socio-political aspects of the 19th century freakshow and dissects the treatment of disability in literature from Dickens to De Lillo). Walking with my student and friend in her wheelchair to the Culver Hotel in Los Angeles for an event several years ago, a group of people passed us and said, out loud, as if we could not hear them or see that they were staring: “What is it, the freak convention?” That we heard it together didn’t make it any better to bear. As the dopey CIA guys shuffle off, the winged, fire-spitting girl who once worked as a stripper says she’d rather be stared at with her clothes off instead of the way those men, leering, through the window, had looked at her. Sister, I hear you.

But the CIA needs the mutants, at least for now, because it’s 1962 and Russia is up to no good, so the novices are whisked off to Charles’s Westchester manor to train in safety, away from Shaw’s group of evil, less ethical but persistent mutants who endeavor to track them down and who, together with the Russians, are plotting nuclear war. Here, at Mutant Summer Camp, and under Charles’s patient and faithful tutelage, the kids learn to control their powers, to embody their differences and help the CIA in its goals to foster goodness and maintain life as everyone knows and accepts it.

Charles, the cheerleader, has unshakeable faith in all his mutant apostles, but especially in Erik, although he’s noticed that his new BFF can only move crap around when he’s super pissed off and overwhelmed by rage, when the power is literally out of his hands, out of his body, and therefore of little use to him.

One afternoon Charles asks Erik to move a satellite dish in the distance. Erik’s hand shakes, he clenches his jaw and concentrates like mad but he cannot do it. Without rage he is impotent. At this pivotal moment in the love story (and it is a love story), Charles slips into Erik’s mind, sees the impossible journey he’s been on, and his heart fills. Hidden beneath the memories that fueled Eric’s vengeance is another memory that Erik cannot access until Charles reveals it to him: Shabbat dinner, the soft glow of candles, his mother’s hand caressing the side of her son’s face, a snapshot steeped in stillness and peace, a memory saturated with love. Erik drops into T.S. Eliot’s “still point of the turning world,” a reality that hangs between serenity and rage, a state of being that holds the key to harnessing true power. He understands that both the moment of his mother’s murder and the memory of her loving touch are seared into him as deeply as the camp tattoo snaking down his inner arm. He moves the satellite dish easily. It took Charles, a real friend, to remind him of that truth, as friends are meant to do. (You are not just this, but this and this and this). Friends don’t allow the other’s view of the self to become fractured or myopic, and Charles and Erik remain friends, even when they eventually betray one another. For now, Erik blooms with the joy of being able to control access to those memories that grip him at the throat and also those that allow his heart to move past the vengeance element of grief.

And make no mistake, grief is vengeful, and up until his meeting with Charles it has sent Erik on a globetrotting quest for revenge. Who are you? The bartender asks after Erik kills two Germans living in Argentina who, when they see Erik’s tattoo, explain that they were just following orders. Just think of me as Frankenstein’s monster, here to find my creator Erik responds, glancing at a photograph of Shaw, the man he’s looking for, mounted on the wall. There’s nothing I love more than a reference to Mary Shelley’s book in a comic book movie – the perfect synthesis of absurdity and profundity.

All along Erik aims to kill his creator, he makes no bones about that, even to Charles, who warns that such an action will not bring him peace, which, according to Erik, was “never an option.” He’s gunning for Shaw because he is compelled, even morally obliged to do so; he is obeying some inner moral voice that says destroy the man who killed your mother and he cannot say that it isn’t right, this path. Simone Weil described faith as a kind of descent, a necessary obedience to gravity, an inevitable drop, a giving in. Erik is dropping down down down from the first frame of the film.

While Charles is playing camp counselor, Erik is doing some recruiting of his own. “You want to be accepted,” he tells Raven, who doesn’t want to show her true (literally) blue color because she’s ashamed, “but you can’t even accept yourself.” In the end, Raven chooses Fassbender (wise, very wise) instead of her other crush who has developed a serum (faulty, as it turns out) that he promises will preserve her powers but make her normal according to acceptable standards of beauty and, as he says in one wrenching scene, “truly beautiful.” Erik, on the other hand, says, “I want to see the real Raven,” and when, lying in his bed, she flutters into her full-on blue and bumpy naked glory, he lies next to her, touches her face and kisses her, saying “You are an exquisite creature.”

When I was pregnant, I felt redeemed, suddenly plucked from the mutant group and plopped into a far less (I thought) complicated group. I’ve always been asked to tell the story of my body in public by nosy strangers, but now the questions, which seemed at the time, less menacing, were “how far along” and “when are you due” instead of “what happened to you” or “why are you limping.” I got pregnant quickly, and everything progressed “normally.” My body was making up for being crippled, yes! It was doing what women’s bodies were meant to do, and it seemed to be doing it easily. Each ultrasound was fine, the fluid around the baby was fine, everything was fine. I was spinning and doing yoga and the baby was growing growing growing and I could hardly believe it. I had been expecting catastrophe and here was this physical bliss. When we received the early amniocentesis results the doctor said it couldn’t look any better. “You won’t give him that? Will you?” one man asked me, entirely unprovoked and without preliminaries at a Los Angeles Whole Foods, pointing first to my leg (I was wearing a short skirt) and then at my belly. This time I refused to answer. When Ronan was born, I kept thinking of the story I told so many people – “When did that happen? How long? When? Why?” At birth, from birth, because of birth. Ronan’s birth was just fine – there was nothing at it or coming from it except him, wrapped up like a little red burrito in his clear box, and joy. Then: the ultimate betrayal. Ronan has Tay-Sachs disease, a genetic disease, a disease that came from my DNA against all sense or logic, a disease that came from me, from my mutation (which, unexplainable according to the family tree I know, hails from Morocco), and it is far from “groovy.” It’s deadly.

In the final sequence of The X-Men (spoiler alert!) Erik confronts Shaw. Before he strikes the lethal blow he hangs, balanced, in a delicate equilibrium of rage and love. In the end, however, he cannot have both, and he chooses to kill Shaw, rejecting mercy. Although audiences (I think) are supposed to believe that Erik loses his moral center when he becomes Magneto, when he becomes the monster his monster-creator had intended him to be, it’s not that simple. It’s not the choice we’re supposed to like, this rejection of Charles’s “we the mutants” slogan, but I would argue that it’s not necessarily immoral. Weil, although she liked parties and was actually quite sociable, was fearful of the royal “we,” fearful of the impression like minds could make on an individual, suspicious of her ability to get sucked into the collective spirit, which is why she never joined the church and spent a lot of time alone, thinking for herself. She was famous for saying that if she heard kids singing a Nazi song then part of her would become a Nazi so she just steered clear of big groups all together. Her morality was too bendy and this frightened her. She wanted her experience of God to be pure, so isolation that was the ticket for her, although this too is incorrect, as Weil abhorred the idea of will, and thought about faith in terms of gravity – it falls on you, you fall into it, passivity is the ultimate sacred stand when it comes to encountering (indeed, waiting) for God. “The flesh impels us to say me and the devil impels us to say us,” she writes in her letters. Magneto followed his flesh impulse, the demand that rang out from his bones. I can’t say I disagree with him.

After Shaw is murdered and the nuclear threat he’d been plotting is neutralized, the CID decides that the mutants have played their role and now it’s time to get rid of these freaks for good, especially now that they’re literally isolated on a single island. They launch the missiles, and as Erik is turning the missiles around, striking back, he always expected this, and Charles is trying to stop him – even though he’s sick with the betrayal, he can hardly believe it – a stray bullet lodges in Charles’s back and paralyzes him from the waist down. Erik cradles his friend, the only one he’s ever known, and he’s sorry for the accident but he can’t be sorry for his choice, and we get just enough pathos from McAvoy (James, in addition to being gorgeous you really are the most wonderful thespian genius), saying, stoically but fearfully I can’t feel my legs I can’t feel my legs, the world literally snatched beneath him, blaming his friend but unable, even now, to stop loving him. The two friends step into different voids and from now on they will be enemies without sacrificing the love they bear for one another. I understand Magneto’s decision to meet rejection with rejection. Sometimes I feel like I could bring a plane down with my grief or wipe out a planet. I understand his desire for retaliation. I do not think he is wrong. As it turns out, Jeremy the minister presented a far less nuanced moral view than what’s offered in The X-Men. He offered platitudes in place of faith, a regurgitated set of beliefs rather than honest wrangling with what it means to be faithful, human, good.

The optimism of Charles’s heart (although this is not the same as moral quality, both Magneto and Charles have good hearts), cannot undo what has been done, to his friend or to him. We don’t like to think about it in a world where we believe in making things happen, in taking charge of our own destinies, a world with ads claiming that Michael J. Fox is “outfoxing” Parkinson’s, a world where we visit psychiatrists and take pills and lose weight and change our bodies and talk talk talk to try and emotionally regulate or forget or remember or get well or whatever. But some damage is permanent, some trauma never leads to recovery: this is true for bodies and it’s also true for minds. Horror leaks. Painful memories shuffle their way to the top of the deck and demand to be revisited. Grief endures; it may change shape, it may alter in form or severity, but it stays. There is such absurdity in this situation, it’s such a grotesque tunnel of (il)logic, but, as Simone Weil famous said, “affliction is ridiculous.” It doesn’t mean it’s ha ha funny, but like a joke, it turns expected reactions, quite literally, around.

I’ve read Weil before, and until six months ago I was annoyed with her ruthless aesthetic, her obsessive individuality, but re-reading her work I find her refreshingly, relentlessly self-reflexive and truly prophetic. She endlessly interrogates and examines her thoughts, trying to be, quite simply, good. The path she chooses is not an easy one, but she refuses to resist it, and this relaxing into absolute brokenness – her true vulnerability — provides the foundation for moral activity. Virtue is meaningless, worthless – it tries too hard; it strives too ardently to make itself the object of itself.

When Erik weeps like Frankenstein’s monster over the man who destroyed and created him, he owns his choice. To reject Charles’s way doesn’t mean Erik doesn’t love him, he does, but Erik’s way, his series of choices, were forged in the fire of an experience the emotional consequences of which few of us can fully imagine or appreciate, let alone deeply understand – even Charles, the deeply empathetic telepath. Erik’s morality was created solely, like Weil’s, through experience. She only ever trusted her mind, not what people told her she should be, think, do. She wanted to be saved but she would not be baptized. She wanted to be alone with her experience of Christ but would join no church or religious order. She, like Erik, was set apart, different, haunted, although the haunting had very different origins.

Charles Simic, who knew plenty about war himself, writes She says there is no god, only an eye here and there that sees clearly. The neighbors are too busy watching TV to burn her as a witch.

Who is to say who is the better mutant, Charles or Erik, the more evolved man, the one better adapted to survive in the wicked world? Who is to say whose eye is clearer, the one who seeks to destroy because he has been destroyed, or the one who can still believe in goodness because sorting through a person’s horrific memories as if they were a deck of cards is different than living through the reality that created the deck in the first place? Who is to say that getting stuck in that moral moment, giving into it, is not a kind of breaking free?

Watching The X-Men I was reminded of the movie Sophie’s Choice based on the William Styron novel of the same name. When Sophie (the triumphant Meryl Streep) finally tells her story – she stepped from the cattle car at a concentration camp and was offered the choice to save her daughter or her son and she chose her son – she repeats I have saved my son; I have saved my son. She is back in that desperate moment, reliving it, justifying it. Nobody is saved, of course, least of all Sophie, who spends the rest of her life living with the emotional consequences of that impossible choice that was never really a choice; she is twisted, forever. No experience will compensate: no great love, no happy moment. What is crooked cannot be made straight. Styron nailed it in the novel and Streep got it right in her face: stoic, eyes glassed and stricken and far, far away in the moment of the twist, the moment from which there is never a return. A voice speaking from the moment of ruin, the truly inconsolable heart that time has failed to heal. Only in death is she finally set free. Death, for Weil, was that one time when humans actually get it right, the only moment of unadulterated truth that a human person will ever have access to, and it happens right before they disappear.

“One must believe in the reality of time,” Weil wrote in her Notebooks. “Otherwise one is just dreaming.” Ronan lives in a perpetual state of being-in-the-now that people try to achieve on expensive retreats on tropical islands, chanting and doing yoga. Is Ronan, in fact, in his mutancy, more evolved? Is he embodying a Tay-Sachs baby version of Nirvana, a kind of perpetual, existential bliss, or is this just trying to sprinkle glitter on a pile of shit, glossing over an absurdly tragic situation? Can it be both?

Writers are supposed to say it can; we’re supposed to muck around in the moral gray area, bringing it to life rather than trying to explain it away. The writerly inclination (indeed, the responsibility, according to David Ulin in his terrific new book The Lost Art of Reading) is to stare down the abyss and then render it, but this brings with it the attendant danger of being unable to look away, of getting locked inside that darkness and eventually to stop looking for a door or even a crack of light. The writers I have always loved – Dostoevsky, Tolstoy, Porter, Baldwin, Atwood, Munro, McCullers, Ondaatje – don’t accuse their “bad” characters of moral failure, but instead narrate the progress of a mind, a forward, spiral motion that sometimes leads to murder, or deception, or death, or simple laziness, or perversion. But it is never depicted as a failure; amazingly, neither is Magneto’s defection from goodness (or at least this viewer’s interpretation of it).

What is the nature of Ronan’s experience? I wonder if it would be a surprise and yet recognizable, like the sound of someone laughing while they are having a conversation in a language you don’t speak: same music, different context. Yesterday I sat outside on our patio in the sunshine with Ronan on my lap, his legs around my waist, his head on my chest. He scanned my face with his fading vision. He sighed, smiled, and then forgot me. He practices no attachment. There is nothing – person or object – that he treasures so much that he will experience pain at the loss of it. He is not really a special needs child in the sense that we’ve come to define it, so I can’t talk about learning a new language for his diagnosis. I can’t tell light-hearted, entertaining stories about the dilemmas of balancing work with childcare, or worrying about whether or not he is spending too much time with his nanny, narratives I find undergirded by a kind of smug privilege. The problem is not logistical, or emotional, or socio-political, although it contains each of these: it is ontological. I have learned a new language of being, complete with a new vocabulary; I have tried to find a new definition of motherhood that incorporates my experience. It can be a terribly lonely enterprise. And this reinvention of life, as Weil well knew, often creates desperation. She wanted only to anchor herself to the truth of her experience. Plenty of people thought she was misguided, selfish, and self-indulgent. I want to anchor Ronan to the world, make him known, but I understand that this will not save him. I feel compelled to try regardless.

Weil claimed a unique faith rooted in her raw experience, outside of all tradition, but without being dismissive of institutions or people who found comfort in that organized expression of religion. Suffering, for Weil, is always the moral choice; it is, in fact, the evidence of love because it provides the opportunity for the sufferer to give in, give up, and wait for God. The abyss, then, is good news, because there’s nothing you can do about it but leap inside. No wonder she appeals to me now.

Weil also regarded acute observation as a kind of prayer and suggested that one could “train” in it. According to this logic, I’ve been praying from the moment of Ronan’s diagnosis, although I never would have thought to call it that. I’m thinking of her now as I sit at O’Hare. “Birth defects” and “rent-a-grandma” are trending on Yahoo. I have to do quick emotional triage when I see a baby doing tummy time in the gate area. If I had to sacrifice the people I see from my perch in the food court: two men speaking Ki-swahili to one another; a woman eating fries from a MacDonald’s bag while she runs past; the group of six gray-haired friends playing a game of poker in a sun-drenched table at Starbucks, would I take them all out to save my son? Does the fact that I might answer yes mean I’m immoral? Maybe. Or maybe I’m just over-looking, over thinking, like Mary Oliver in her poem “Logan International”: In the city called Wait/also known as the airport/you might think about your life/there is not much else to do.

Last week I met a woman on the plane from St. Peter, Minnesota who was going to Palm Springs to visit her terminally ill son. She was 85 (it was the day before her birthday), and wearing a pressed silk blouse, polyester slacks, nude panty house and leather sandals. Her hair had been done at a beauty shop (not a parlor or a salon, but a shop). Her purse matched her outfit, and I found out with some gentle prying that she was indeed a lifelong Lutheran. We talked about our terminal sons, which was very odd, since the one is sixty years older than the other. I went to college down the road from St. Peter, in Northfield, and one freezing winter afternoon I traveled there for a religious studies convention. I went to present my senior thesis but in the end I could not stand in front of a classroom of people and talk about disability and liberation theology, although I’d been doing research and writing for a whole year. Instead I returned to my dorm room and beavered away on the final draft of my thesis in my college dorm room, totally isolated, not showering or sleeping, eating M & Ms balanced on saltine crackers, making elaborate little floor maps with note cards, watching the snow pile up to the windowsill, and finally bursting into tears when I typed the last word. I suppose if I’d put my mind to it, I might have been able to make the mini-fridge fly across the room or the wood of my lofted bed burst into flames. But I stayed hidden, unable to be mutant and proud except on paper and on my own.

To be disabled is to be exiled; to have a terminal illness is to be isolated in one’s time-limitedness; to grieve is to be annihilated; and to live is inevitable: all of these, together and at once, form the core of the truth of being human. So, too, does “the instant of death” which is “the center and object of life…it is the instant when, for an infinitesimal fraction of time, pure truth, naked, certain, and eternal, enters the soul.” Weil wants all of the world, death-in-life and life-in-death, which is why she stands so spectacularly alone in her singular understanding of God piercing her, literally, with suffering, which is also the only truth worth hanging your life on. A moral crucifixion.

If I had Professor X’s power to read minds, what would I encounter inside my son’s mind? Fish, flowers, dirt, light, kale and applesauce and prunes and oatmeal and cheesecake, beetles so big they don’t walk but waddle, sunsets, pine-scented wind, the feel of being inside different people’s arms, the acupuncture ball across his foot, Mexican restaurants, salt, Chimayo churches with their red and yellow and blue wooden birds flying from the ceiling, flannel sheets, a singing caterpillar, massage oil, books that talk in his grandparents’ voices, warm water, a spinning lizard, a stretchy hair band, so many many songs. Are his singular moments like the slow glitter of light trailed, for just a moment, behind a falling star, before they disappear? Or would Prof X see only light, space, peace, nothingness, the true still point and nothing more? In short, everything – the annihilation – that Weil spent her life seeking? If he could describe himself, if had a sense of self, if he had cognitive abilities, would he use the same words Weil used to describe herself? “Indeed, for other people, in a sense I do not exist. I am the color of dead leaves, like certain unnoticed insects.” An interesting self-portrait, brutal and perhaps true.

We make what we will of what we’re given. Oh, we want to believe that things can be fixed, that we can bootstrap our way into better moods, into healthier psyches, but some things are unfixable. Some things that break stay broken, but it’s in that moment – bless you, Weil! – that moral choices can be made. It’s where both Magneto and Professor X can both be “good” man following two entirely different paths. They can prove that goodness is an allusion while still endeavoring to make it manifest in the world in their very different ways.

I don’t have mutant powers. I can’t bend metal or stop time, or make hex-A, the singular enzyme my son lacks for his survival. I only have my words, so inadequate, so small. I have only a love that I had spent my life waiting for without knowing it. (Pablo Neruda: I love you without knowing how, or when, or from where.) And at least for now I still have my heart, hovering just this side of twisted, balanced between Magneto’s fury and Professor X’s expansive spirit. A complicated goodness, as if there is ever any other kind. And for now I have my son, exquisite creature, genetically flawed, a gorgeous sweet-faced mutant creature baby. Ronan, has no perspective, no “point of view.” He is a baby who exists in a constant state of attention and nothing more which, according to Weil, puts him in a constant state of prayer, which makes him perfect, which makes him, according to Weil’s thinking, the embodiment of love. Is the situation so perverse that it’s horrible? Of course. Is it also exquisite in a Weil-ish way? I have to say yes.

But the problem is this: I don’t want Ronan’s life, his exquisite little life, to be a gift, to me or to anyone else. I want it to be his own, but I don’t have a choice. And I would chuck all conventional notions of goodness if I thought it would help him live. Grief, after all, like faith and conviction, both of which Weil articulates strangely and beautifully, is an obstacle and it is lonely. It is particular and personal and it cannot be overcome.

Writing in a corner, my back against the wall, crying, people lining up to board the plane, waiting and staring and talking and probably wondering what the fuck? –  and maybe thinking freak or wench or wretch or what were the other names for Frankenstein’s monster? – and truly, for the first time in my life I don’t care, it’s all I have, it’s all I can do, being struck can mean breaking free and I am not going to Fort Lauderdale as they are, this is it, this is my fuselage, these are my trembling hands on the keyboard, these are my heavy fingers pounding the letters, these words are the flying objects, the airborne knives, the molten metal, the cracked examination tables, this is the centrifugal force of the full-body rage, the deformed and aching heart, the big fat juicy pit of sadness, this is a grieving mom sitting on a blue carpet with her computer plugged into one of the only electrical outlets in Terminal K at Chicago O’Hare International Airport and waiting for a flight to Madrid, waiting to fly over dull squares of farmland and then the dark ocean, weeping and watching these other passengers board (a man holding a John Grisham hardcover, a woman with bright orange nail polish, three young women in army fatigues, the gate agent saying to a little boy who is boarding with his dad, “bye bye, little guy”) and bursting with love and knowing that it will never be enough.

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EMILY RAPP is the author of Poster Child: A Memoir. A former Fulbright scholar, she was educated at Harvard University, Saint Olaf College, Trinity College-Dublin, and the University of Texas at Austin, where she was a James A. Michener Fellow. She has received awards and recognition for her work from the Atlantic Monthly, the Mary Roberts Rinehart Foundation, the Jentel Arts Foundation, the Corporation of Yaddo, the Fine Arts Work Center in Provincetown, and the Valparaiso Foundation. She was the Philip Roth Writer-in-Residence at Bucknell University and has received a Rona Jaffe Writers’ Award. Her work has appeared or is forthcoming in the Los Angeles Times, Salon, The Sun, The Bark, The Texas Observer, Body & Soul, Good Housekeeping, and many other publications. She has taught writing in the MFA program at Antioch University-Los Angeles, where she was a Core Faculty member, UCLA Extension, the University of California-Riverside Palm Desert Graduate Program, the Taos Writers' Workshop, and the Gotham Writers' Workshops. She is currently professor of Creative Writing and Literature at the Santa Fe University of Art & Design in Santa Fe, New Mexico. She is currently at work on a novel and a new memoir, Dear Dr. Frankenstein, which chronicles her life with her infant son, who is dying of Tay-Sachs disease. Excerpts from the book can be found at http://ourlittleseal.wordpress.com and you can visit her at www.emilyrapp.com.

51 responses to “Exquisite Creatures: Ability, Goodness, and The X-Men

  1. Wow, this is a very profound essay! It really stirred a lot of painful memories of my deafness and being too timid to be honest about my feelings. It took a lot of strength to be vulnerable like that and it seemed that you almost are like Professor Xavier when poetically describing your son’s possible memories. Great job in writing a kick ass essay!

    • Emily Rapp says:

      Thanks, Patrick! I always tell people that my husband probably married me in part because of my love for comic books, but here it comes in handy..

  2. Jasmine says:

    I loved this essay. Thank you for a great read I connected with.

    • Emily Rapp says:

      Jasmine, Thanks for reading. It’s so nice to hear that people can connect with the issues, even if their lives are quite different. I guess that’s the point of essays!

  3. Emily, you already know how beyond excited and honored I am to have this brilliant, meditative, profoundly moving essay as part of TNB. This is one of those pieces that I know is going to stay with me like certain books I read in graduate school that simply exploded inside my head and left me changed. Writing with that kind of power just doesn’t come along every day, but when it does it’s not something you can ever forget. Thank you.

  4. Julie Peterson says:

    There is nothing for me to say but Thank you for writing this. And to send you something, not sure what. Love, maybe.

  5. Becky Palapala says:

    This is excellent. Heart and head, pop culture and theology. I can’t imagine it gets much better than this.

    The writing, I mean.

    You up the ante substantially. Welcome.

  6. Meg Wolitzer says:

    Amazing piece of work.

  7. Rosemarie DiMatteo says:

    I swear, I would read Emily Rapp’s laundry lists, but here is her genius, the way she identifies, surrounds and renders profound grief into illimitable beauty. I read her work and gather strength. There is no more valuable kind of writing than this. I am overwhelmed with gratitude.

  8. gordon lee johnson says:

    Helluva piece, Emily. Hellava piece.

  9. Zara Potts says:

    Such an incredible interweaving, moving piece. I have learned so much from this piece and your courage and fierce honesty has inspired me to look into the abyss and feel it.
    Thank you so much, Emily.
    Thank you.

    • Emily Rapp says:

      Thank you!! I’m overwhelmed by all of the positive comments, and for people’s willingness to read a long essay!

  10. Consuelo Flores says:

    This piece will stay with me for a long while. I am amazed (and not because you’re the writer) by your ability to braid so many ideas, realities, experiences, and memories into a riveting literary narrative. I haven’t seen or talked with you in so long, but I feel as though I can feel the pulse of your heart and I send you my love.

  11. Gloria says:

    What an absolutely fascinating and beautifully written read.

    I love this line:

    Virtue is meaningless, worthless – it tries too hard; it strives too ardently to make itself the object of itself.

    That’s one of those lines that I’m going to think and re-think about for a long time.

    Welcome to TNB, Emily.

    • Gloria says:

      Also, the santuario at Chimayo is one of the most special places I’ve ever been to in my life and I miss it very much. Thank you for mentioning it.

      • Emily Rapp says:

        Thanks, Gloria, for being such a good and careful reader. We are headed to Chimayo tomorrow. I can’t get enough of that place and its holy dirt (and tamales, of course).

  12. dwoz says:

    another voice in the chorus here. Superb piece. When I first glanced, I said “oh, dear god, another comic-book-movie-as-allegory” review. Was wonderfully pleased to be sorely disappointed on that note.

    Nice to see a Charles Simic mention.

    He was a neighbor of mine. I was standing in line with him at the town clerk’s office one day, about 2 months after his Pulitzer, while he tried to convince the clerk that a mistake had occurred on his car registration. She became frustrated and suggested that he maybe “needed to learn english better.”

    • Emily Rapp says:

      Thanks! And thanks for the Charles Simic anecdote, although that woman had obviously never read his genius poetry in ENGLISH. =) Thanks for reading.

  13. Strange, what ignites a memory. What gives a dream. What makes us work internally. But emotions are always the instrument. Excellent Emily, really excellent.

  14. C.J. says:

    Aunt Em, I can’t say much else other than that you are a real inspiration to me. Thank you for this. Much love to you, uncle Rick and Ronan.

    • Emily Rapp says:

      Hey Carl,

      Thanks, nephew! I’m glad you liked it. Your endorsement makes me feel — I must admit — just a little bit cool. =) Love to you, Stella, Matt, and the Ms.

  15. Melissa Chadburn says:

    amazing amazing amazing

  16. I love you, Emily. This is a beautiful, heart-stopping essay. Thank you.

  17. So many things about this essay ring true. I found myself, over and over, nodding, and saying aloud, “Yes. This.” Your big fat knives, these words, cut to the quick.

  18. Jim Simpson says:

    I echo dwoz’s comic-book-movie-as-allegory dread at first glance. Glad I gave it a chance. So many heavy issues expertly weaved together. I absolutely loved this piece; you have courage beyond my comprehension. Very, very moving.

    This brought to mind John Irving’s final line in Garp that we are all terminal cases. Coincidentally, I was just thinking about Styron’s novel the other day, specifically the eponymous choice flashback and how impossible and horrible the idea was (and still is) for me to contemplate. Oy.

    Weil certainly got much (not all) right, as did O’Connor (Flannery), Schopenhauer, Anthony Doerr, Buechner.

    • Emily Rapp says:

      Oy indeed. I love Styron, and I loved his book about depression, which is weirdly jaunty. I agree with you about Weil — sometimes I think she’s just off her rocker, and other times I feel like she’s on the right rocker that nobody has seen fit to sit in yet! Thanks for reading.

  19. L. Moore says:

    This was a wonderful essay. One of my favorite lines: I can’t tell light-hearted, entertaining stories about the dilemmas of balancing work with childcare, or worrying about whether or not he is spending too much time with his nanny, narratives I find undergirded by a kind of smug privilege. Simply magnificent.

  20. Nana K says:

    First i’d like to say that this was an amazing essay and as i read I’ve found myself inspired by your work, abilities with words and, for the second time, your story in general. As an aspiring writer you genuinely show me a level I can only hope to achieve and as a person, at least through your writing, you’ve shown me the persisting force that is love and (complicated) goodness. I happen to be roommates with your nephew Carl at SUNY Albany and i’m so happy he’s introduced me to your work. Thank you for the inspiration.

  21. Emily Rapp says:

    Hey Nana! How great that you know Carl. Best nephew EVER. Thanks so much for reading.

  22. jmblaine says:

    i still
    believe in
    Jesus too.

    But not the shiny happy
    Bee Gees jesus.
    That dark-eyed Jesus
    with dirt beneath his nails
    the One who said:
    Those of you so sure
    you’ve got it together,
    & those you call lost
    are closer to the Kingdom
    than you.

    Welcome Emily,

    You are one of us.

  23. This was a beautiful essay. I love how intelligently and heartfully (A word? Your writing makes it one) you weave the whole world into your story, and your son’s story. Thank you for writing this. It flies into fugue rapture at the end in a way that reminds me of Magneto, in some movie, lifting his arms and drawing all the filaments of metal from across a room–you summon everything, amidst sadness, and make it sing.

  24. KentT says:

    Oh, Ms. Rapp, that was magnificent! From reading your first posts about your son and Tay-Sachs I wished I could write something insightful, comforting and wise to help you in even the smallest way. After reading this post it seems you have a depth, intelligence and education I could not hope to attain. My words would amount to just another sympathy jingle or some preacher’s platitudes about hope or heaven or unfathomable mystery bullshit. What is clear is change. Ronan is changing you. What you wrote here is, to me, like a Van Gogh painting, “From pain and madness; ecstatic beauty!” (And that quote is from the BBC TV series, “Dr. Who.” [Which shows the extent of MY education dear Emily!]) So thank you Emily. And thank you Ronan.

  25. Sara Habein says:

    Oh my, this was something other. Beautiful. Only just now read it — hope no one minds late arrivals.

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  27. Dena Rash Guzman says:

    I am a little late to this conversation, but am unable to resist joining in.
    My son was diagnosed with autism at three. By age five he was a walking encyclopedia of all things Marvel, particularly X-Men. One day I picked him up at school and he said, “School is hard for a mutant.” He was about seven.

    I worked as a special education rights paralegal at the time. A few weeks later it was MLK Day. He told me he’d learned about MLK at school. He said, “Maybe Professor X is kind of like MLK. Maybe you are like Professor X, Mommy.”

    To make a long story short, I homeschool him now.

    Thank you for sharing your story, so heartbreaking and exquisite. I will tell you now, I am crying.

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