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To Love What Is

A Marriage Transformed

Farrar, Straus and Giroux Paperbacks, September 2009
ISBN: 978-0-374-53205-5, ISBN10: 0-374-53205-2,
5 1/4 x 7 15/16 inches, 192 pages, Notes,
Trade Paperback, $14.00

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Each of us has imagined with dread the occurrence of an event outside our control that will permanently alter the course of our lives. In To Love What Is, Shulman recounts such an event and how she rose to the challenge. On July 22, 2004, at two a.m. on a coastal Maine island in a remote seaside cabin with no electricity, running water, or road to reach it, she woke to find that her beloved seventy-five-year-old husband had fallen the nine feet from their sleeping loft and was lying on the floor below, naked and deathly still. Though Scott would survive, he suffered an injury that left him seriously brain impaired. He was the same—but not the same.

In this elegant memoir, Shulman describes life on the other side: the ongoing anxieties and risks—and surprising rewards—she experiences as she reorganizes her world and her priorities to care for her husband and discovers that what might have seemed a grim life sentence to some has evolved into something unexpectedly rich.

Praise

"'Every couple who stays together long enough has intimations that a catastrophe is waiting,' Alix Kates Shulman observes early in her remarkable new memoir, To Love What Is. For Shulman, the catastrophe came in the middle of a July night in 2004 when her 75-year-old husband, Scott York, fell nine feet from a sleeping loft in their Maine summer home. He survived, but sustained broken ribs, shattered feet, punctured lungs, and internal bleeding. Most devastatingly, Scott suffered traumatic brain injury, leaving him largely dependent on others, especially Shulman, the noted feminist and author of such books as Memoirs of an Ex-Prom Queen. How York's permanent injury changed this marriage between two people once as fiercely committed to their independence as to each other is the weeping heart of this brave, elegiac work. Both hopeful and terrifying, it's a tale of love's resilience, but also its limits in conquering the sudden cruelties of life. On the surface, Shulman's book is evocative of Joan Didion's The Year of Magical Thinking, her award-winning memoir about the death of her husband, John Gregory Dunne. Yet Shulman's chronicle pierces deeper because her husband does not die. Instead, she is left to mourn his loss even though he's still with her day after day. He looks the same, can communicate though not with the same intellectual acuity, and holds fast to an abiding adoration for his wife. Still, while Shulman celebrates every small improvement, she knows the man she fell in love with is forever gone . . . To Love What Is is a painful book. For some, it will be achingly familiar, mirroring their own difficult lives with an incapacitated spouse, parent, or child. Others may view it as an uncomfortable glimpse into an uncertain future that likely awaits us all, either as caretaker or the cared-for. Yet it resonates most profoundly as a haunting meditation on a love more enduring than the body or mind, and as a potent reminder that even an irreparably altered life is still a life to be cherished. As York sees it, 'he's just getting old; in my version, he's gradually getting better,' Shulman writes. 'Neither is completely true, but we cling to what we must believe, feel whatever it is we feel, see what it suits us to see, depending on the circumstances, the time, our mood, our need. I, too, in a sense, keep making up our story moment by moment, out of hope, despair, anguish, optimism—and love.'"—Renee Graham, The Boston Globe

"This is a suspense story. Will Scott, Alix Kates Shulman's husband of 20 years, get better, get worse, survive, go to a nursing home, kill himself? Will Alix leave him, send him away, lose her mind, compromise her health? These are real questions, and they keep this loving memoir moving forward. Alix and Scott met and dated as teenagers, then lost touch, married others and divorced. Thirty years later, they reconnected and, after 20 happy years, experienced a shattering accident. Scott, age 75, fell and suffered a traumatic brain injury. The accident did more than shatter his body and rearrange his brain; it erased his personality. The modest, shy, and courtly man he used to be is replaced by a garrulous, nonsensical, and often dirty old man bereft of memory. 'Scott watchers' are needed to attend to him if his devoted wife is to have any life of her own. Typical of others with his condition, he follows his wife around like a duckling, puts his clothes on backward, hides things, insults his caretakers. Shulman writes candidly of her own impatience and irritability and recognizes that without him she would be released from the grinding responsibility and daily bondage of his care but would also face a life without purpose, passion, or love. The couple's predicament is paradoxical: 'The relentlessness of his needs and the frustration of mine are one.' Shulman elegantly pursues this paradox, its surface, its parameters, and its hard core."—Barbara Fisher, The Boston Globe

"The most remarkable and memorable part of the story Alix Kates Shulman tells in her latest memoir, To Love What Is, comes early on, before the main event. The book is mostly about what happened after Ms. Shulman’s 75-year-old husband had a terrible fall from a sleeping loft in her rural Maine retreat: He suffered significant and lasting brain damage, and she refused to institutionalize him, even though he must be supervised every waking hour. To Love What Is is a chronicle of the organization and sacrifice involved in keeping her husband at home with her in New York City—a maze of traps and dangers to a disoriented, brain-injured person. But what’s most beautiful in this book is the story of how Ms. Shulman and her husband, Scott, got together in the first place, and how their bond—forged in youth, lost, then re-sealed in late midlife—created a marriage that could survive, as a true marriage—with affection, emotion, sex and everything else—even after the traumatic brain injury . . . Even after Scott's accident, To Love What Is remains a love story, with Ms. Shulman fighting to retain every shred of dignity for her husband, who has basically zero short-term memory and a significantly damaged long-term one as well. At times he’s annoying, or mean, or even scary; he can hardly tolerate anyone other than his wife, which keeps her tied to him, away from her work, until eventually an aide is found who can get along with him well enough to be his companion for a few half-days a week. But he’s also, at strange and surprising moments, lucid and tender, comprehending that something is different, or off, though he can’t name what it is. Even with his diminished capacity, Scott loves his wife the best he can, and sometimes, the way Ms. Shulman writes it, that love seems more real than what some of us experience. In giving us a detailed account of the progress of Scott’s limited recovery, along with an account of what she’s gone through herself to get him the best possible care (even in New York, at a prestigious and expensive hospital, there’s a moment when Scott is left unattended—a lapse that could have ended his life), Ms. Shulman has made an important contribution to a genre that includes another fine (and overlooked) book by a famous second-waver, Kate Millett’s Mother Millett (2001), which chronicles the author’s struggle to keep her ailing mother out of a nursing home. These are books that show a different facet of the feminist movement of the ’60s and ’70s: Although those years were so much about personal empowerment, the lessons taught and learned inspired a deep and committed humanism that transcends individual wants and desires. As young feminists gripe about the outdated ideas of the second wave, or as we try to redefine what feminism is supposed to mean in this new century, we could do worse than learn from Alix Kates Shulman’s example."—Hillary Frey, The New York Observer

"Alix Kates Shulman experienced the joy of a fulfilling marriage to an intelligent, caring man. Her book To Love What Is: A Marriage Transformed is as much a tender portrait of her husband, Scott, both before and after his injury, and her marriage to him, as it is a guide to embracing fate—to love what is . . . With incredible bravado, fortitude and honesty about the enormous difficulties, Shulman takes on the role of caregiver . . . Shulman suffers loss, but she gains much, too. Their enduring love for each other shines through these pages, reminding us that while 'Loss' is a sad song, it can really help to know the flip side by heart."—Linda Stankard, Life

"To Love What Is is aflame with intensely lived life . . . The publication of To Love What Is makes clear that she is no bra-burning dinosaur but an ever-evolving woman, eager to bring us along on the latest stage of her odyssey through bedrooms, kitchens, and rooms of one's own. To Love What Is makes a powerful read in itself, but ideally it should be published in a four-volume set, alongside Memoirs of an Ex-Prom Queen and Shulman's subsequent memoirs . . . Born in 1933, Alix Kates Shulman was older than many of her sixties compatriots; so today, she's out ahead of some of us in exploring this next chapter of women's experience. But don't read To Love What Is looking for any endings, happy or otherwise. Alix Kates Shulman is still dynamically in the midst of living her life."—Diana Postlethwaite, The Women's Review of Books

"A passionate new book of uncompromising honesty by best-selling author Alix Kates Shulman. Shulman intertwines the personal case study of her frightening, frustrating, hopeful and often funny career in caregiving for her brain-injured husband, Scott York, with the tale of the three times they fell in love . . . To Love What Is allows readers to learn along with Alix about the science of the brain and professionals’ many insights about caring for someone who has brain damage . . . Alix and Scott’s is a story of love and aging. Their adoration in each other’s arms invites readers to delight in their high spirits, care about how they traverse the vicissitudes of later life and turn page after page to discover what will happen and who they will meet next. Again and again, Alix and Scott fall in love for a recurring third time."—Paul Kleyman, Aging Today

"To Love What Is is the tale of how Shulman struggled to cope once their lives had split irrevocably in two. The book, which is not particularly long, is divided into nine chapters, and some of the most powerful writing comes in the first of them, when Shulman describes the accident and its immediate aftermath. What makes the event so gripping is the fact that the cabin's remote location means that the rescue crews seem to take forever to arrive and the suspense is often unbearable. Shulman treats the material, like any good writer, as a small-scale tragedy with major implications, and she's as skillful in this depiction of fear and the slow drip of time as any novelist. Shulman tailors her brief scenes with such perfect pacing that we are never altogether certain what this man's fate will be . . . Shulman has given us one of the clearest, funniest, saddest and most invaluable portraits of what a brain injury does to a human being, as well as to all who surround and care for him."—Robert Leiter, Jewish Exponent

"A gripping portrayal of how the lives of a wife and her husband were forever changed when the husband incurred permanent brain damage . . . [A] compelling love story . . . Totally engaging and surprisingly frank . . . disturbing yet somehow reassuring."—Kirkus Reviews

"In her third memoir (after Drinking the Rain), Shulman details the transformative effects of her husband's traumatic brain injury at the age of 75. Prior to Scott's fall from a loft bed, their relationship had been one of two deeply committed yet autonomous souls. Steadfast in her opposition to a nursing home, the author decided to tend to her husband herself. A genuinely moving story, especially of interest to those who've experienced or known those who've suffered from traumatic brain injury or who have devoted their lives to caring for another."—Elizabeth Brinkley, Library Journal

"A fall from a loft bed left author Shulman's 75-year-old husband with traumatic brain injury and utterly dependent on his wife, as she recounts in this deeply affecting memoir of their ordeal together. The fall in the summer of 2004 in their Maine seaside cottage inflicted numerous broken bones, internal bleeding and blood clots to Scott York's brain, causing damage that Shulman gradually learned would take years to heal and probably cause permanent memory loss. Advocating for the best treatment, therapy and eventual care back in their New York City loft became the author's calling for the next year, though to her growing dismay she recognized that her once brilliant husband, a sculptor and former financier, would never make art again or even be able to hold an intellectual conversation. His impairment is rendered particularly poignant as Shulman (Drinking the Rain and Memoirs of an Ex-Prom Queen), moves backward in time over their 50-year relationship, first as college lovers in 1950, meeting up again in 1984, when as divorced adults in their 50s they rekindled their passion and mutual interests and got married. Carving out time for herself and her writing kept her from having a nervous breakdown, and while her hope at times flagged, Shulman's devotion never faltered, as demonstrated by her candid account."—Publishers Weekly

About the Author(s)

Alix Kates Shulman

Alix Kates Shulman is the author of four novels, including Memoirs of an Ex-Prom Queen; two previous memoirs, including the award-winning Drinking the Rain; and two books on the anarchist Emma Goldman.

photo: Marion Ettinger

Visit Alix Kates Shulman's Website

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Visit Alix Kates Shulman's Wikipedia page

Excerpt

ONE

The Accident

On a moonless summer night my husband fell nine feet from a sleeping loft to the floor and did not die.

He did not die, though he was seventy-five years old and the accident happened in a remote seaside cabin inaccessible by road, on a Maine coastal island that has no doctor on call, much less a hospital.

He did not die, though X-rays taken several hours later showed that he had broken most of his ribs and both feet; punctured both lungs, causing perilous internal bleeding; and suffered so many blood clots in his brain that

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