Per­sonal Mat­ters

The Iowa Review - - CONTENTS - Jen­nifer Alise Drew

In my early twen­ties, af­ter the magazine I was work­ing for threw its last party, I man­aged to string to­gether a hand­ful of free­lance copy­edit­ing jobs. (It was the year 2000 in New York, when a per­son could still sort of sur­vive this way.) The most sus­tain­ing of them was for the pub­lisher Grove At­lantic, about which I was proud—they had Wil­liam Bur­roughs, for one, and Jeanette Win­ter­son, and Henry Miller. I walked to their Union Square of­fices from my East Vil­lage apart­ment to pick up the manuscripts, thick loose-leaf pack­ages that in­spired both pur­pose and dread. The man­ag­ing edi­tor who gave me as­sign­ments and ha­rassed me when they were near­ing their due date—meet­ing dead­lines was not my strong suit—hired me, I am sure, be­cause of my sex and age. He made this clear when we met for the oc­ca­sional drink, but there was no sense in getting up­pity: it was, af­ter all, the tail end of an era in which big-name, mid­dle-aged staff writ­ers took young wannabes home and set them on their win­dowsills like flow­er­less vases. I needed the work. One of the first books I brought home was Ken­z­aburo Oe’s semi­au­to­bi­o­graph­i­cal novel Rouse Up O Young Men of the New Age!— a book I read on my bed, the only place to sit in my tiny stu­dio, apart from a wooden stool at the makeshift desk that was clut­tered with dark­room para­pher­na­lia and had an en­larger bolted to it. I ag­o­nized over the man­u­script, leav­ing curled eraser crumbs in the sheets. I read it through twice, but I re­mem­ber noth­ing of the plot, none of the characters— noth­ing about it stuck with me, as I sup­pose it should not have. The book, like much of Oe’s writ­ing, ex­am­ines a fa­ther’s re­la­tion­ship with his brain-in­jured son, and I was not a par­ent, nor par­tic­u­larly in­ter­ested in chil­dren, with or with­out dis­abil­i­ties. I had never heard of Ken­z­aburo Oe or that he was known, as he puts it, for “writ­ing about the dig­nity of hu­man be­ings.” At that stage in my life, I was more in­ter­ested in Mary Mc­carthy, specif­i­cally the Mary Mc­carthy of “The Man in the Brooks Broth­ers Shirt”: “She could feel the power run­ning in her, like a medium on a par­tic­u­larly good night.” That is how it—she, a girl in the first half of her twen­ties—feels to me now; I am sure I did not feel that way then. Fast-for­ward some years: through the ashes that sifted down onto the win­dowsill of that apart­ment the fol­low­ing Septem­ber, through leav­ing New York, through other ex­pe­ri­ences suf­fi­cient to grant hu­mil­ity—a few years work­ing with Hunter S. Thomp­son, grad­u­ate school, mar­riage, proof­read­ing nail pol­ish bot­tles in a fac­tory in Van Nuys—and there is

a baby. A baby born by choice: that is to say, we knew it was pos­si­ble he would be born with dif­fer­ent abil­i­ties, and we wanted him any­way.

Ken­z­aburo Oe’s son, Hikari, was born in 1963 with a brain her­nia. The doc­tors told Oe and his wife that, with­out an op­er­a­tion, their son would die, but that an op­er­a­tion would likely leave him with pro­found dis­abil­i­ties. This scene plays out in Oe’s 1964 novel, A Per­sonal Mat­ter, in words far harsher than these. A few months af­ter he was awarded the 1994 No­bel Prize in Lit­er­a­ture, he told The New Yorker that be­fore Hikari’s birth, “I had been a pas­sive per­son. My life had been dark and neg­a­tive, with no thought to­ward the fu­ture...but with the birth of my son my heart opened.” For a month and a half fol­low­ing Hikari’s ar­rival, Oe was un­able to de­cide whether to pro­ceed with the surgery. Then he went to Hiroshima to re­port on an anti-nu­clear con­fer­ence, and sub­ter­ra­ne­ously, he’s said, “to es­cape to some other hori­zon.” He met with sur­vivors of the atomic bomb and re­al­ized he had to do all he could to save his son. In A Per­sonal Mat­ter, Oe’s nar­ra­tor, Bird, leaves the baby in the hos­pi­tal and re­news his affair with whiskey, along with a girl he knew in school; the psy­cho­log­i­cal de­base­ment that Oe de­scribed feel­ing dur­ing the pe­riod be­fore Hikari’s surgery is taken to the ex­treme with Bird, for all but the last few pages. Oe has ex­plored his son’s story over and over in his work. As Hikari grew, so did his fic­tional coun­ter­part—some­times named Eey­ore, as he is in Rouse Up, some­times Mori or Hikari. In A Per­sonal Mat­ter, he is Kikuhiko, af­ter a young man that Bird has be­trayed. Oe wrote two ver­sions of Hikari’s birth, each with a dif­fer­ent out­come; the other is in the novella Agh­wee the Sky Mon­ster. In both ver­sions, a child is born with what doc­tors sur­mise is a brain her­nia, but with what turns out to have been a be­nign tu­mor. As Oe told the Paris Re­view in 2007, “Agh­wee’s fa­ther chooses not to help his de­formed child live. In A Per­sonal Mat­ter, I wrote about an­other pro­tag­o­nist—bird—who chooses to live with the child. . . . Hav­ing writ­ten about the ac­tions of both Agh­wee’s fa­ther and Bird, I steered my life to­ward those of Bird. I didn’t in­tend to do this but af­ter­ward I re­al­ized that this was what I’d done.” While Oe only briefly thought of al­low­ing his son to die, the pe­riod dur­ing which he wished for Hikari’s death is the source of his deep­est shame.

My own choice, which ar­rived dur­ing preg­nancy as op­posed to af­ter birth, has noth­ing in com­mon with Oe’s, beyond the ba­sic ques­tion of whether one is will­ing to raise a child with dis­abil­i­ties. At twen­tysix weeks’ ges­ta­tion, our baby stopped kick­ing; a Dop­pler ul­tra­sound re­vealed that he was in dis­tress, vastly un­der­weight, with too lit­tle am­ni­otic fluid to sus­tain him. Later, an­other doc­tor thought he saw an

ex­tra digit on one of the hands, sig­nal­ing all man­ner of dark, syn­dromic pos­si­bil­i­ties. My hus­band and I quickly learned what could re­sult from growth re­stric­tion and hy­poxia, from preterm birth, but it was all pos­si­bil­ity, statis­tics. For me, what we faced was less a choice than an in­abil­ity to do any­thing but wait. I’m aware, of course, that this was some­what cow­ardly—that what I did was hide from what facts we had, retreat into still­ness, into hope and see. I was al­ready too at­tached to the lit­tle body in ques­tion to con­sider the gi­ant step of a late-term abor­tion. Our doc­tor’s en­treaty about de­cid­ing what qual­ity of life we wanted to bring into the world fell flat: I did not know how to make that de­ci­sion, and I still don’t. What de­fines qual­ity? Is life with­out speech worth liv­ing? Is hap­pi­ness pos­si­ble with­out the real use of one’s arms and legs? What about pro­found in­tel­lec­tual dis­abil­ity, a short life­span, a cra­nial or spinal de­for­mity? We were be­ing asked to base a de­ci­sion on un­known out­comes, on as­sump­tions I now know are ableist, to play god. Our son emerged weigh­ing three pounds, fif­teen ounces. He was tiny and wrin­kled and jaun­diced, but his eyes were a keen, deep blue, and the down still cov­er­ing his body gave him the look of a baby dusted in gold. He was, apart from the jaun­dice, healthy and phys­i­cally fine. We would not dis­cover any­thing “wrong” with him un­til later, when he be­gan to miss his de­vel­op­men­tal mile­stones; we were given the di­ag­no­sis of cere­bral palsy shortly be­fore he turned two. From the time he was eigh­teen months un­til he was three, I drove him to an early in­ter­ven­tion pro­gram for chil­dren with dis­abil­i­ties at UCLA, a sort of pre-preschool, where we met other fam­i­lies like ours. Even then, with such young chil­dren, cliques were form­ing: par­ents of chil­dren whose chal­lenges were great had dif­fi­culty re­lat­ing to par­ents of chil­dren who had milder is­sues—a speech de­lay, maybe, or high­func­tion­ing autism. I was painfully aware of my son’s grow­ing beauty: his dim­pled grin, banker’s glasses, and curly dan­de­lion hair charmed ev­ery­one who saw him, over­shad­ow­ing other facts (he wasn’t walk­ing or talking). Beauty is a great gift over which we have no con­trol. To be a beau­ti­ful child is a boon. Peo­ple smile at a cute two- and three- and four-year-old with dis­abil­i­ties; they tend to stare and then look away when that same child is joy­fully crawl­ing in a pub­lic space at six, his butt in the air, thin legs scoot­ing be­hind him with the alacrity of a wild an­i­mal cross­ing the sa­vanna. They stare openly and with hor­ror at that child in the throes of his self-stim­u­la­tory be­hav­ior, eyes rolled up and face con­torted, gut­tural sounds emit­ting from his mouth, arms and legs kick­ing and wav­ing. How quickly ug­li­ness con­fers the sta­tus of “other.” Our boy is a force of na­ture: in­tel­li­gent and hi­lar­i­ous and pos­sessed of an im­pres­sive strength of will. We got lucky; I have known this for

a long time. It turns out that a wheel­chair is a tri­fle. Had we been less lucky, our fights would be dif­fer­ent. I know now that some di­ag­noses can com­pro­mise daily life past what a child and his care­givers may be able to bear: the un­qual­i­fied suf­fer­ing of Tay-sachs, for ex­am­ple, or some­thing like Emanuel syn­drome, to which, due to my ge­net­ics, my preg­nan­cies were vul­ner­a­ble. Just to­day, I passed a fam­ily in the gro­cery store, whose eight- or nine-year-old was be­ing pushed in a large stroller, vis­i­bly strug­gling against the straps. I saw them again at check­out; the boy’s sis­ter—she could not have been much past twelve—was rock­ing the stroller as though he were a baby, her face as long and gray as her par­ents’. Lov­ing some­one whose ex­pe­ri­ence of the world causes them pain re­quires some­thing su­per­hu­man and comes at a cost. But once you love a child, you can­not imag­ine him be­ing some other thing, some other way; only with great care would you wish to go back and make him into some­one else.

It took me six years af­ter my son was born to get around to read­ing A Per­sonal Mat­ter. When a friend and fel­low writer rec­om­mended it to me, I bought it, and then, af­ter skim­ming the first few pages, set it aside. I was ir­ri­tated by the overly lengthy ex­pla­na­tion of the nar­ra­tor’s fetishes—maps and al­co­hol—and the way he avoids his wife, who is co­in­ci­dently in la­bor, “naked on a rub­ber mat, tightly shut­ting her eyes like a shot pheas­ant fall­ing out of the sky.” Ev­ery­thing about the be­gin­ning oozes hor­ror: hor­ror at his wife’s body, at the very place (Africa, which “re­sem­bled the skull of a man who had hung his head”) he has fan­ta­sized so long about vis­it­ing. I wasn’t sure I was ready for Oe’s ex­act­ing take on any­thing, let alone dis­abil­ity. There is a pho­to­graph of the young Oe with Hikari at five or six on the book’s cover, which con­fused me when I first saw it: con­fused be­cause there is ini­tially lit­tle re­sem­blance be­tween the writer, who ap­pears here in a dark suit and glasses, and his nar­ra­tor (though one of my fa­vorite mo­ments in the Paris Re­view in­ter­view is when the 72-year-old Oe says he rarely goes to bars be­cause when he does, he tends to get into fist­fights). Here is Bird, in­tro­duced to us as a delin­quent, a scut­tling, blink­ered young man of twenty-seven who spent the first thirty days of his mar­riage whiskey-drunk, who was ex­pelled from high school. Be­fore he is sum­moned to the hos­pi­tal, he be­comes en­gaged in a tus­sle with a gang of boys. “If I don’t fight,” Bird tells him­self, “my baby will be born into the world solely to lead the worst pos­si­ble life.” He knocks one of the teenagers un­con­scious, and the rest of them leave him alone, root­ing out a bro­ken tooth that he spits onto the street.

I read in a kind of fever, look­ing for the moment Bird wakes up: surely he wakes up, I thought. Bird is an un­like­able nar­ra­tor, a nar­ra­tor we nonethe­less root for, hop­ing he will do the right thing. Un­like Oe in 1963, we have the ben­e­fit to­day of so­cio-po­lit­i­cal en­light­en­ment, of neona­tal in­ten­sive care wards. There was much less med­i­cal in­ter­ven­tion avail­able then to save a brain-in­jured baby and less de­sire to do so: chil­dren with dis­abil­i­ties were not be­lieved ca­pa­ble of rising above the lim­i­ta­tions of their birth. The whiskey delir­ium, too, is an apt metaphor for early par­ent­hood—the find­ing of one­self in land un­known, sleep­less, and in Bird’s case, ut­terly re­pulsed by the baby and by fa­ther­hood. Un­like Africa, there are no maps for this. Bird’s re­luc­tance is in­ter­est­ing; he drinks away not only the be­gin­ning of his mar­riage and his place in grad­u­ate school, but the de­ci­sion he has now been tasked with mak­ing, un­able to tame the “wilder­ness in­side him­self.” And the hos­pi­tal scenes are ex­tra­or­di­nary. Bird’s en­coun­ters there made me think of the bar lizards in Fear and Loathing in Las Ve­gas, their turpi­tude and craven self­ish­ness. When he meets his son’s med­i­cal team, Bird an­nounces sev­eral times, with hos­til­ity, “I’m the fa­ther,” which he later imag­ines comes across as “I’m the mon­ster’s fa­ther.” The di­rec­tor of the hos­pi­tal in­vites Bird to come and “see the goods,” and Bird hes­i­tates, want­ing to know ex­actly what he will be see­ing. “There ap­pear to be two heads!” the di­rec­tor tells him, cov­er­ing a gig­gle. Bird asks if there is any hope that the baby will “de­velop nor­mally”:

“De­velop nor­mally!” The Di­rec­tor’s voice rose as though in anger. “We’re speak­ing of a brain her­nia! You might cut open the skull and force the brain back, but even then you’d be lucky to get some kind of veg­etable hu­man be­ing. Pre­cisely what do you mean by ‘nor­mally’?”

The di­rec­tor of­fers Bird the choice of mov­ing the in­fant to a univer­sity hos­pi­tal, a choice that is not a choice, as there is noth­ing else to do. Then, in part­ing, he whis­pers, “Of course, you can for­bid them to op­er­ate if you choose to.” Bird’s re­ac­tion—“Poor wretched lit­tle baby!”— mo­men­tar­ily matches the reader’s: you want to save the baby, but should you? Bird even­tu­ally pushes a pe­di­a­tri­cian into sub­sti­tut­ing sugar water for milk to weaken him so that surgery is no longer an op­tion—and there we hang for much of the book. The hos­pi­tal scenes are a good ex­am­ple of what the Nuffield Coun­cil on Bioethics calls a “part­ner­ship of care,” in which par­ents and the med­i­cal team make an in­formed de­ci­sion about what is best for the baby, though the par­ents’ wishes should pre­vail. As the Jour­nal of Med­i­cal

Ethics notes in the 2007 ar­ti­cle “Let­ting Ba­bies Die,” ow­ing to “both the un­cer­tainty of out­come and the in­abil­ity of the baby to make any choice for it­self,” what is best for the baby is of­ten not clear:

What the baby, older child or adult is en­ti­tled to, morally and legally, is ap­pro­pri­ate care. Neona­tal in­ten­sive care is in­va­sive and bur­den­some. A baby may be sub­jected to 200 or so in­tru­sive and painful pro­ce­dures in one fort­night. He or she is iso­lated from the love and warmth of their fam­ily, and de­prived of the care that should be the birthright of any new­born. When in­sist­ing on treat­ment im­poses an in­tol­er­a­ble bur­den on the baby, such treat­ment be­comes in­hu­mane.

If A Per­sonal Mat­ter scru­ti­nizes its au­thor’s shame at his in­dif­fer­ence, how­ever brief, to­ward his son’s life, it is also ask­ing us to look at how we value hu­man life and why. If Bird’s baby is likely to die with­out surgery and likely to sur­vive surgery with lit­tle cog­ni­tive abil­ity to ex­pe­ri­ence ex­is­tence, should he be tasked with do­ing so? Isn’t that one way to de­scribe an “in­tol­er­a­ble bur­den” on a life, and not just the in­fant’s, but that of ev­ery­one who loves him? In other words, though Bird is the epit­ome of a self­ish hu­man, wouldn’t un­der­tak­ing such a surgery de­rive from purely self­ish—and sen­ti­men­tal—rea­sons? In the last four pages of A Per­sonal Mat­ter, Bird de­cides to re­trieve his son from the eu­th­a­niz­ing abor­tion­ist with whom he’s left him and take him back to the hos­pi­tal for surgery. I read some­where that this con­clu­sion, the small space of Bird’s re­demp­tion fol­low­ing the baby’s re­cov­ery, con­tains the book’s only dull note: it wraps up too quickly, with Bird ab­solved not only of his affair but also his shame, his nick­name, and even his in­fant’s orig­i­nal di­ag­no­sis. It all feels too neat—too lit­tle, too late. At least, I felt this way as an edi­tor; as a par­ent, it came as a re­lief, how­ever im­plau­si­ble it may have been. Writ­ers love this book. I don’t know many par­ents of chil­dren with spe­cial needs who could get through it with­out dif­fi­culty. As far as I can tell, none of Oe’s in­ter­view­ers have ques­tioned why he chose to change his son’s brain her­nia into a be­nign tu­mor in the fi­nal pages. Why edit out that which, in Agh­wee the Sky Mon­ster, con­signs the fa­ther to un­nec­es­sary mur­der, and in A Per­sonal Mat­ter, makes the boy’s nor­mal de­vel­op­ment seem more likely? I won­der at this per­haps un­reg­is­tered wish, which Oe voiced so early on (he wrote both books dur­ing the first year of Hikari’s life), to change his son’s dis­abil­ity. I sus­pect that if he were asked about it now, he would say that giv­ing the fic­tional child a healthy brain steals some­thing es­sen­tial from Hikari’s story.

One of the book’s mi­nor themes is the pos­si­bil­ity of a “plu­ral­is­tic universe.” As Bird’s lover, Himiko, puts it in their first scene to­gether, “Ev­ery time you stand at a cross­roads of life and death, you have two uni­verses in front of you; one loses all re­la­tion to you be­cause you die, the other main­tains its re­la­tion to you be­cause you sur­vive in it. . . . In other words, var­i­ous uni­verses emerge around each of us the way tree limbs and leaves branch away from the trunk.” I thought of this as I read the in­ter­views Oe has given, how he’s re­turned again and again to the same themes, the same prob­lems, al­low­ing them dif­fer­ent out­comes: he does all this time-travel from his liv­ing room, sit­ting across from his con­stant com­pan­ion, his son. I thought of it again when I read the story of Agh­wee, whose fa­ther, tor­mented by what he has done, takes the baby’s ghost—swad­dled in white and now the size of a kan­ga­roo—to ride a Fer­ris wheel, a train, to see rhi­nos at the zoo. That part of Oe that leaned, how­ever briefly, to­ward a dif­fer­ent choice seems to run along­side him like a shadow—i know, be­cause I can hardly think of what my life would be, with­out my son in it.

When you read about Oe’s work, you read—as re­cently as last year in the New York Times and the Wall Street Jour­nal— de­scrip­tors like “brain­dam­aged” and “men­tally dis­abled” and “men­tally hand­i­capped” and “dam­aged son” and “id­iot son,” even if the lat­ter is first put in quotes. Oe’s No­bel bi­og­ra­pher used the phrase “sav­ior son,” as though Hikari’s ex­is­tence has mainly served to fur­ther Oe’s artis­tic de­vel­op­ment. And on Wikipedia, Hikari is de­scribed as hav­ing been “brain-dam­aged since his birth”—surely one of the less well-ex­am­ined sen­tences in his­tory. But my twenty-some­thing self prob­a­bly would not have ques­tioned that word­ing, ei­ther: I would not have rea­soned that if you were brain- in­jured at birth, you would al­ways be brain- in­jured. Hikari is now a cel­e­brated clas­si­cal com­poser who spends his days lis­ten­ing to CDS and com­pos­ing while his fa­ther writes and reads. Hikari’s first CD sold more copies than any of Oe’s books, which Oe has boasted about. On the oc­ca­sion of Oe’s No­bel Prize, the New York Times wrote that Hikari “has over­come his dis­abil­ity enough to be­come a com­poser,” which is a cu­ri­ous phrase: it is as though the two as­pects of his per­son­al­ity are at war with each other, as though his par­tic­u­lar neu­rol­ogy that gave him autism and epilepsy, that made him re­spond at five to bird calls and not to lan­guage, that made him un­der­stand mu­sic the way most of us never will, is not pre­cisely what gave him this gift. Why does Hikari need first to be de­fined by his dis­abil­i­ties, as though “brain-dam­aged” is more apt than “mu­si­cally gifted”?

I would never de­scribe my son as “my dis­abled son.” He is merely my son, a boy who, ow­ing to his own unique neu­rol­ogy, hap­pens to do a few things dif­fer­ently, but I’m aware here that I’m play­ing a bit of a glad game. I both want my son to stand on his own as a ca­pa­ble hu­man— as a per­son with­out a pre­fix, whole in­stead of part ab­sent, af­firmed in­stead of de­nied—and I want him to ac­cept and as­sume ev­ery part of him­self, in­clud­ing his cere­bral palsy; his “stim­ming”; his race-car-cool, neon-red wheel­chair, which right now, at six years old, he does. This is a tall or­der, of course—i can’t al­ways man­age it my­self—and the fact is that dis­abil­ity bleeds past its own edges: not walk­ing, not talking with ease, be­ing a kid who spends a sig­nif­i­cant por­tion of his child­hood in phys­i­cal, speech, and oc­cu­pa­tional ther­apy, changes a per­son­al­ity. Our self­hood ex­ists be­hind the screen of our ex­pe­ri­ence. Maybe my son will never see him­self as some­one whose dif­fer­ences make him any­thing other than great, but he will also be treated as dis­abled, and if ex­pe­ri­ence is any in­di­ca­tion, our sense of self is all too sus­cep­ti­ble to the world’s ex­pec­ta­tions. We may not be ca­pa­ble of to­tal blind­ness when it comes to sex­ual, racial, and ableist char­ac­ter­is­tics, but when we talk about “hand­i­capped” or “dis­abled” peo­ple, we’re see­ing through only one lens. But is it ex­ces­sively PC, pre­cious, even, to use terms like “dif­fer­ently abled”? Scan the UN’S Con­ven­tion on the Rights of Per­sons with Dis­abil­i­ties and con­sider the fact that “dis­abil­ity re­sults from the in­ter­ac­tion be­tween per­sons with im­pair­ments and at­ti­tu­di­nal and en­vi­ron­men­tal bar­ri­ers that hin­ders their full and ef­fec­tive par­tic­i­pa­tion in so­ci­ety on an equal ba­sis”—that “dis­abil­ity,” in other words, is a re­ac­tion to “abil­ity,” and there­fore not a real de­scrip­tor on its own.

Much has been made of the “ex­tra­or­di­nary de­vo­tion” Ken­z­aburo Oe has shown his son, first be­cause it is un­usual for Ja­panese fathers of his era to do so, and sec­ond, I sup­pose, be­cause this is what we say about rais­ing chil­dren with chal­lenges: spe­cial or “ex­tra­or­di­nary” chil­dren re­quire “ex­tra­or­di­nary” care. But “ex­tra­or­di­nary” does not nec­es­sar­ily mean any­thing other than not-nor­mal: we re­mark on difference, some­times choos­ing a word that sounds praise­wor­thy, be­cause it is some­thing to re­mark upon. The truth is, not ev­ery­one will have the de­sire, the re­sources, and the reser­voir of pa­tience and love to raise a child with spe­cial needs. Had Hikari been born to other par­ents, his life would have likely taken a less happy path. Here is a ques­tion for our time: if the state, or in­deed the fed­eral gov­ern­ment, man­dates that all chil­dren must be born, or saved, then how will we pro­vide for their care? One wants to re­mind pro-lif­ers that

life con­tin­ues past con­cep­tion. Who is go­ing to sup­port the ba­bies that some par­ents are not set up to have? With­out fed­eral pro­grams like Med­i­caid, how will par­ents of spe­cial needs chil­dren sus­tain the years of early in­ter­ven­tion and ther­apy, com­plex med­i­cal care, and time and per­sonal com­pro­mise that, with­out wealth or help, are beyond the reach of most peo­ple? How can we raise chil­dren to mean­ing­ful lives if they have to not only “over­come” their dis­abil­i­ties, but lack the ba­sic re­sources to do it? De­ci­sions about right-to-life are com­plex and eth­i­cally murky, and they are per­sonal. How can we tell par­ents that the choice is not theirs to make? At the end of the Paris Re­view in­ter­view, Oe is asked if he finds faith to be a bur­den. He doesn’t have faith, he says:

If there is one area through which I en­counter the tran­scen­den­tal, it is my life with Hikari dur­ing the past forty-four years....ev­ery night, I wake Hikari to go to the bath­room. When he re­turns to bed for some rea­son he can­not put a blan­ket on him­self so I put a blan­ket on him. Tak­ing Hikari to the bath­room is a rit­ual and has for me a re­li­gious tone. Then I have a night­cap and go to bed.

If Oe’s talk about his son is con­sis­tently ten­der and re­spect­ful, his al­ter ego labors on the page. I think of the New York Times’ re­view of his most re­cent novel, Death by Water, in which it’s said that Oe’s nar­ra­tor “takes out his cre­ative cri­sis on his dis­abled son in acts of breath­tak­ing emo­tional cru­elty.” I un­der­stand how the fail­ures and fa­tigue of what is now fifty-four years of car­ing for Hikari must haunt Oe, be­cause my own fail­ures as a par­ent al­ready haunt me. So you might, as Oe did in A Per­sonal Mat­ter, use a dif­fer­ent word in place of “faith.” In the book, Bird goes to visit a friend, a Balkan diplo­mat who has aban­doned his own du­ties and taken up with a Ja­panese girl, and tells him he has left his son to die. The diplo­mat is up­set: “Kafka, you know,” he tells him, “wrote in a let­ter to his fa­ther, the only thing a par­ent can do for a child is to wel­come it when it ar­rives.” Be­fore they part, he gives Bird a dic­tio­nary in which he in­scribes the Slavic word for “hope.” Later, at the end of the book, Bird thinks of this and de­cides that when he is home with his son, he will look up the word “for­bear­ance.”

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