Jed Levine interviews Alix Kates Shulman
Read an excerpt from To Love What Is

Jed Levine (JL): Tell me a little about your background. I know you are an accomplished writer and novelist.

Alix Kates Shulman (AKS): I’ve written twelve books, novels, memoirs, biography and children’s books. I studied philosophy at Columbia and started out writing children’s books with a philosophical slant. It was by writing a biography of Emma Goldman, the anarchist, that I learned how to write a life. Then the women’s liberation movement exploded into the world and I had the luck to connect with it early on. My first novel, Memoirs of an Ex-Prom Queen, reflected that new consciousness. It was a bestseller, which allowed me to pursue a life of writing. I had been an editor before that. I wrote three more novels, including one about a homeless woman, before I turned to memoir. A Good Enough Daughter is about caring for my parents in old age. My mother had Alzheimer’s in Cleveland.

JL: I knew that your mother had Alzheimer’s disease. Did that prepare you for your role as caregiver for your husband?

AKS: Well, no. It’s such a completely different experience. Look at what society expects of children in contrast to partners. In our culture, adult children are expected to separate from their parent, that’s considered successful parenting. Often they live in different parts of the country and have their own lives and other people they’re responsible for. But with a spouse, a partner, you share intimacy, daily goals, living space, and the quality of love is different. You take vows, “For better or for worse, in sickness and in health.” We’re expected to take care of each other for the rest of our lives. (Interestingly, it wasn’t till I started caring for my husband, after my parents were dead, that I began to appreciate my father’s daily devotion to my mother.)

JL: The book is so much more than a story about caregiving. It is a wonderful love story.

AKS: Yes, people do find it an intriguing story. We were lovers at seventeen and twenty, and then 34 years later, while I was divorcing, my husband-to-be reentered my life. Scott was always very demonstrative and loving. Now he is even more so. I included a section about our sexual life together, because sex among older people is something of a taboo subject, and I wanted to write about it.

JL: Tell me about the role of your family and friends.

AKS: My children have been wonderful. When Scott’s accident happened, Polly, my daughter, flew up to Maine to be with me. My son is a frequent “Scott Watcher” in the evenings. In the beginning, when my life was on hold, and I was in the hospital every day from 8 a.m. to 8 p.m., my son took care of the domestic details and managed things while I was with Scott. It has also brought my step-daughter closer to me. Still, it’s hard for me to ask for help.

JL: In the book you describe the tension between the competing feelings you have while caring for Scott. You clearly love him deeply and want to continue to care for him, but have times when you resent it, feel burdened by it…are angry. How did you manage all these strong feelings? What did you do to take care of yourself?

AKS: Of course I sometimes feel frustrated, angry, resentful, overburdened. How could I not? In my book I’ve tried to be completely frank about this aspect of our lives and leave nothing out. But I realize that if I indulge those feelings by expressing them to Scott, it’s a sure way to make him lose it, and then we will both suffer. Because I’ll have to deal with his agitation and undo the damage by calming him down. Since he can’t, I must, because the disease has stripped him of all control over his feelings. Better to avoid his upset in the first place by (as The 36-Hour Day, that wonderful handbook for caregivers, advises) “remaining patient and understanding.” It’s in my best interest to remain as calm as I can. Fortunately, I only feel those negative feelings occasionally, when I’m actively caring for him; they don’t carry over to the rest of my time. Because I understand that he absolutely cannot help what he does or feels. When we fight, our basic goodwill toward each other always rescues us in the end.

JL: You are a member of our co-sponsored Support Group at NYU. What motivated you to join, how did you find out about it, has it been helpful, and if so, how?

AKS: After I finished writing my book, I finally had time to seek out a support group. I learned about it at NYU, where Scott had been part of their dementia research program. I find it to be very helpful. It is a place where once a week we can talk about things and situations that other people don’t want to hear about, even though, by now, we members know more or less what each of us is going to say. I learn so much from the other members. Here’s an example. Scott loves to straighten things up, and to touch everything. We live in a loft, so my desk and work space is not in a separate room. My desk may look like a mess, but I know where every paper is! When I’m not there he likes to put them in order, which drives me crazy. One of my group members suggested that I cover the desk with a sheet, and it worked! Another benefit is that there are people in the group caring for people in different stages of the disease. You learn what it is like to care for someone in a nursing home, or facing other issues. It helps prepare you for what is coming.

JL: You write about the need for time for yourself, for writing, for being with friends, for living the life that you used to. Some people might feel guilty about that. What do you do to take care of yourself now?

AKS: I have always been a writer. Scott knew that from the start and was always supportive of my work. He likes me to work. Now that I have help caring for him, I can write during the days and go out with friends some evenings or to my political action groups, as before. Once I accepted Scott’s impairment as permanent I re-joined my life. Writing this book was very important for me. I wrote it more quickly and more efficiently than any other. It just flowed out of me. I knew that I only had five hours a day to write and if I wasted a minute I might not get another chance. I had an important story to tell, and I felt passionately about telling it. Before Scott fell I planned to write a memoir about our relationship, about elder love, a subject that is not written about much. After the accident the story and the relationship changed, giving me an entirely new focus for my book. The book I’ve written is not just about illness or caregiving, it’s a love story, about our relationship as it has evolved, about us. I read the entire thing to Scott as I was writing it, to make sure that there was nothing that he didn’t want in print. He approved of every word.

Scott’s condition, although extreme, has not changed my life all that much, especially since I no longer have the illusion that I can cure him. I write, we hang out together, I cook, I read after he’s asleep, I see friends. True, we can’t travel anymore, and he can’t meet me on a street corner after work, and go to dinner, as we used to. But his condition has changed him so much more than it has me. I sometimes imagine what it would be like if he died, that perhaps I would be freer. But I would be in such deep mourning, and I would miss him terribly. The fact is I love this man, he’s the love of my life, and, since his fall, the focus. Though he is greatly incapacitated and not always in control of his emotions, he is still the sweet, modest loving man I married. As for me, I cannot die, because who would take care of him?

JL: There are so many first-person narratives from caregivers. I receive unsolicited copies of books, some self-published, almost every week. Most are not well written, but I can see that they have a therapeutic value for the writer…your book is different…a more universal message, that goes beyond the specifics of your story with Scott. Tell me why you think this book is different.

AKS: As a writer, a novelist, I always hope to convey something broader and deeper than just a story about a certain set of characters. I always hope that my work will make a difference. I know that I am one of millions of people in this situation, and I want to participate in the larger dialogue. Otherwise, why spend the years and tremendous energy it takes to write a book? When actually writing I am involved in creating scenes, characters, etc., and am not thinking about the ideas or the “message,” but they are there, underneath. The experience I’ve written about is a very affecting one, calling forth extreme emotions. When Scott was diagnosed I read everything I could, but most of it was scientific or tips. I hope my book will convey the feelings involved in this unusual life, the living experience. I hope it will resonate with other caregivers, and perhaps in an odd way give comfort and hope and support.

JL: I love the title To Love What Is. It so perfectly captures the message of the book. It is a tribute to “acceptance” and not getting stuck in the hope that Scott will recover or get better. How did you come to this place?

AKS: I probably learned that attitude from my father. I know that there are things I cannot change. Not that I wouldn’t wish to have our old life back and have things different, if I could, but that’s not an option. Why waste time and energy in wishing for the impossible or in regret? I have a good life with Scott, even now. I am fortunate that he was, and still is, a very loving man, and that we have devoted caregivers to make our lives easier.

(One title I entertained was Our Luck — intending it as both ironic and straight.) Temperamentally, we’re both optimists, and that helps. The title, To Love What Is, captures very well what keeps us going. When I read that part of the book to Scott, he said, “Hear, hear!!”

JL: Thank you Alix for writing so eloquently about a topic that not everyone wants to talk about, but which affects so many people. I wish you the best of luck with To Love What Is.

Ms. Shulman will also be at Memory Walk 2008 where copies of her book will be available for sale. Alix has graciously agreed to do a book signing during the event. More details to follow at www.alznyc.org.

An excerpt from To Love What Is by Alix Kates Shulman ^Back to top

One day it happens, the dreaded event that will change your life, the more ominous because you don’t know what form it will take or when it will occur. To me it happened on July 22, 2004, at two a.m. on a Maine coastal island in a remote seaside cabin, with no electricity, plumbing, or road, where the very isolation that makes it a perfect artists’ retreat also puts life at risk.

Earlier that evening, my husband and I, having traveled all day from New York by bus, ferry, and on foot, carrying backpacks of summer supplies across the long beach that separates our house from the nearest road, had climbed up to our sleeping loft exhausted and fallen directly asleep. Suddenly I was jolted awake. Beside me, our bed was empty. “Scott?” No answer. Louder: “Scott?”

I shined my flashlight down to the floor below. There he lay, the man with whom I’d first fallen in love in 1950 and had shared my life for the past twenty years, curled up like a fetus, naked and deathly still. I grabbed my cell phone and called 911.

A great pounding, and the door burst open. From every corner of the island the volunteer fire and rescue team filled the cabin with their bristling energy. As they left moments later carrying Scott’s stretcher, I scrambled to put on my sneakers and follow them down the rickety stairs, across the fogbound beach, to the fire truck waiting where the road begins — and off we raced across the island to the dock to meet the fireboat that had been summoned from Portland. As we headed out to sea, I gazed back at that carefree world where life proceeds by days and nights, instead of minute by terrifying minute, knowing we’d left it behind forever.

“It’s going to be a very bumpy road before your husband’s in the clear,” warned Dr. Cushing, head of the hospital trauma unit, after X-rays revealed that Scott had fractured many ribs, punctured both lungs, and sustained multiple blood clots on his brain. “It could be a year or more before we know the extent of the damage.”

A year! Somehow, I took this to mean that Scott needed a year to heal. Deaf to the true meaning of the doctor’s words — that nothing could be predicted — I embraced Scott’s recovery as my purpose, my mission, my calling.

But by the first anniversary of his fall, it was clear that though his bones had healed, his brain had not — and probably never would. His short-term memory and cognitive ability were so damaged, and he was so thoroughly disoriented in space and time, that he could never be left alone. My goal — and our lives — would have to change.

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