Customer Reviews

To Love What Is: A Marriage Transformed

5 star:		(11)
4 star:		(2)
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I agree with everything the official reviewers above say: It is a beautifully written memoir and a compelling story. It is also a portrait of a loving relationship that will probably make most of us think, "It's a good thing that wasn't me--I don't think I could have adapted the way Alix Shulman did." The author has woven in, especially in the last part of the book, clear explanations of what happens when there is traumatic brain injury (TBI), and works into the story some of the tips she picks up along the way of how to take care of herself and hang on to at least a few hours to herself during each day. This is not presented as a how-to book, but you sure do get a sense of what you have to be prepared to do, and to give up, if something like this fall from a sleeping loft leaves someone in your family handicapped. Among other things, she has to deal with her husband's loss of short-term memory, his around-the-clock emotional dependence on her, and outbursts of anger and aggression that are especially hard to deal with because he was such a gentle person. TO LOVE WHAT IS is a slim and highly readable book, one I would not hesitate to suggest or give to anyone who has to deal with TBI (or to decide how MUCH they love that person they are thinking of marrying).

Alex Shulman taught me to think about what lies ahead for many of us. If a spouse does not die instantly - the alternative could be anything from terminal illness, to brain damage or anything in-between. Her honesty and description of feelings that many people would not admit to are admirable. I truly couldn't put this book down. Being 50 years old and having not really thought about what lies ahead regarding illness and death of a spouse, this made me go inside myself about how I would handle a similar situation. My husband is now reading this book and he is already gripped by her writing style and the subject matter.
I highly recommend this book.

A number of books have come out in the last few years on caring for a loved one after brain injury: Where is the Mango Princess and Three Dog Life come to mind. Alix Kates Shulman's book is a memoir of caring for her severely brain injured husband, but she goes very far into care giving and we sense that she feels guilt and remorse over her husband's fall from their loft. We don't really get the payoff. She gets to give up much of her life and self to take care of this man, often around the clock. He is verbally and sometimes physically abusive, requires constant care in every part of his intimate physical being and yet, she slogs on. It's never clear, is it love for the man he used to be? Guilt? The continued hope that he will be restored to "normal?" Most readers will shake their head and say, I wouldn't do it. So, why read the book? If you have no particular interest in brain injury? Because Shulman is a really good writer. Reminds me of Didion. Like Didion, lives in the rarified intellectual world of the well to do who don't think they're well to do. The writing though pulls you through, you don't want to put the book down, the flashbacks to her love life with Scott before the injury are utterly compelling. That's my overall description. Damn good writing makes for a compelling read even if the content makes you scratch your head. Whether Shulman is a saint, I don't know. But she's a hell of a writer.

Why a masterpiece? Because with craft and crisp personal honesty the writer snuck past all my defenses and answered the most debilitating life question: What's the point? Answer: To love someone who loves you and forge a bond so dense and indestructible that even when one lover suffers brain damage that destroys the original balance of giving and taking, what remains from the past and in the present is still what it's all about.

Whatever I have read or heard in the past on the subjet of love has failed to penetrate as deeply as this slim, beautifully written story about the love of Scott and Alix that only bloomed in their fifties and how Alix soldiers with ingenuity and courage through the demands inflicted on their love by Scott's accident.

Alix is a strong, independent feminist activist who found in Scott the only man (after two husbands and countless lovers)she could have loved so deeply. How lucky! Perhaps. Perhaps one can make one's luck or at least contribute to it. And so I try to strengthen my love for now and for what may remain.

What more can a book do for a reader? Thank you Alix Kates Shulman

I totally loved Alix Kates Shulman's book. It's a completely gripping love story and involving tale of how a relationship adapts when "for worse" happens. This work makes illuminating and fascinating reading for any person who's married and intends to stay that way: It's proof that there can be romance and satisfaction at any age, in any situation.

Alix book was just the book I needed to deal with taking care of my husband who also also suffered brain damage as result of a fall. I to know how hard it is to stay focused everyday as one does not know what the day will bring.
Thank-you for your book and God bless.

I am an 81 year old Parkinsons disease guy whose first symptoms began to show up fifteen years ago but who was not diagnosed until seven years ago. Fortunately my wife possesses many of the sterling characteristics possessed by Alix Shulman. She helps me get dressed, helps me into and out of chairs and the car, answers the same questions I ask her day after day without getting angry and generally replaces the important elements that my brain disease steals from me as the days go by.

As a quirk of fate, I played basketball at Duke University sixty years ago with Scotty, Alix's husband who is written about in the book, and what a wonderful love story she tells!

I agree with everything that has been written about the book by others. Alix Shulman as an outstanding writer. She presents complicated medical theories and problems in easy to understand language and relates a number of fascinating stories she has lived, while furnishing many interesting details others would omit for personal reasons.

Alix is a masterful reader's writer who gives the reader full value for each dollar spent, both in telling the story in all its details and in the manner in which it is constructed.

Jim Kulpan

This is one of the most moving books I have ever read. It is a love story about Alix & Scott and how their life becomes totally transformed after Scott's suffers a devastating brain injury. Surprisingly, the book is not depressing, but truly inspiring & even uplifting. It is a beautifully written book; the author seamlessly weaves present with past (when the couple first met). Her descriptions of their life in NYC & on an island in Maine are riveting. I will never forget the sight of Alix & Scott dancing on the hardwood floor of their city loft, which they continue to do to this very day.

My adult son suffered a traumatic brain injury a year and a half ago. I have read virtually every book on the subject of TBIs written by survivors and those who love them. This book is among the best of the growing number of such books. It is as well written as any and captures with feeling and first-hand experience the anguish of the original trauma, the stages of healing and the profound hope for an unknown future of the victim's potential. It is simply wonderful and filled with love. I am grateful to Ms. Shulman for sharing her moving story. Nancy R. Mickelsen

To Love What Is: A Marriage Transformed is similar in many ways to A Three Dog Life: A Memoir by Abigail Thomas. Both authors are professional writers who have husbands with substantial cognitive, emotional, and behavioral problems resulting from a brain injury. Both face an agonizing decision: Do I try to keep my beloved at home, at great personal expense, or do I place him in a nursing home? Only those of us who care for a brain injury survivor can truly empathize with these two women. When well-meaning relatives and friends say to caregivers: "Don't sacrifice your life to care for him," these folks just don't get it. Maybe, if they read these two books, they'll understand this dilemma a little better.

Does it take a saint to care for someone disabled by a serious brain injury? Alix Kates Shulman writes that her dedication to her husband is driven, not by a complete absence of self-interest, but by "the contract and consolation of love."

Shulman's husband, Scott, fell nine feet from a sleeping loft. He survived, but was left with a devastating loss of short-term memory and executive functioning skills, a child-like craving for constant attention, and periodic bursts of frustration and anger. This sweet and kind, intelligent, athletic, and artistic 75-year-old gentleman now behaves like an infant, whose selfishness is to be expected not chastised. But, Scott, unlike the infant, will not outgrow this behavior. Happily for him, he is oblivious of his disabilities much of the time and, with constant companionship, is content.

Shulman, like most caregivers, devoted her life to caring for Scott, ensuring that he got the best medical treatment available as he recovered. As the two-year anniversary of Scott's accident approaches, Shulman finally recognizes that some of Scott's most distressing complaints will be permanent. She is beside herself. Perhaps, her lowest moment is when Scott asks: "Are you my wife or my mother?"

Prior to his accident, Scott and Alix had settled into a routine that allowed both of them to pursue their own interests during the day. Shulman, the author, stayed home to read, think, and write. Scott, a sculpture, who began to pursue his artistic interests later in life, spent the day at his studio. But now Scott demanded Shulman's attention twenty-four hours a day.

Shulman's family and friends are shocked by Scott's suddenly altered condition. They argue that only a saint would set her life aside and care for Scott, without help, day after day. They say it's time for Shulman to reclaim her life. The author convinces Scott to try an adult daycare center. Also, she collects recommendations and applications for nursing homes.

This memoir, so eloquently and accurately titled, describes Scott's life-threatening injury, his treatment in the hospital, the early days of his recovery when post-traumatic amnesia left him distressed and agitated, and Shulman's struggles over more than two years to find a new balance in their lives that satisfies both of them.

To Love What Is will educate, enlighten, and entertain not only caregivers who live with a brain injury survivor every day, but also those people on the periphery who need to better understand brain injury and lend their help and understanding more often.