A Novel Recounts the Agony of Early Onset Dementia

In Counting Backwards, School of the Arts Writing Professor Binnie Kirshenbaum tells the story of a middle-aged couple’s struggle with the husband’s descent into early onset Lewy body dementia. From their living room window, Leo begins hallucinating: He sees a man on stilts, an acting troupe, a pair of swans paddling on the Manhattan streets below. Then he’s unable to perform simple tasks, and experiences other erratic disturbances, none of which his doctors can explain. Leo, 53, a research scientist, and Addie, a collage artist, have a loving and happy marriage. They’d planned on many more years of work and travel, dinner with friends, quiet evenings at home with the cat. But as Leo’s periods of lucidity become rarer, those dreams fall away, and Addie finds herself less able to cope with an increasingly unbearable present.

Eventually, Leo is diagnosed with early onset dementia in the form of Lewy body disease. Life expectancy ranges from 3 to 20 years. An uncharacteristic act of violence makes it clear that he cannot live at home. He moves first to an assisted living facility, and then to a small apartment with a caretaker, where, over time, he slips into full cognitive decline. Addie’s agony, anger, and guilt result in self-imposed isolation, which mirrors Leo’s diminished life. For years, all she can do is watch him die—too soon, and yet not soon enough.

Columbia News caught up with Kirshenbaum to discuss the novel, along with her writing life, what books are on her mind these days, and what she’s working on now.

How did this book come about?   

The impetus for Counting Backwards was my experience with my husband's protracted illness and subsequent death, but it is decidedly fiction. I have no desire to write a memoir, in part because I safeguard my privacy, but even if I were to muster up the courage to expose myself in print, I'm confident that I would fail. I wouldn't be able to stick to the facts. What thrills me about writing is the relinquishing of the self in deference to the imagination, creating characters, getting to know them intimately, indulging in their flaws and failings, and having little-to-no idea what will happen next until we get there.

And so, the genesis of the book was a lived experience, but once I got going, it took on a life of its own. None of the characters are "real" people. They were created to better suit the story. Major and minor events were invented to propel the plot forward and to heighten tension. For authenticity and accuracy, I had to do a good deal of research.   

How does inspiration arrive, in terms of what to write next?

I think of inspiration as an unexpected guest showing up at my door. They arrive from myriad points of origin—a shadow of lived experience, a conversation overheard, an observation, from something I've read, and from out of nowhere. Some of them, I welcome. Others, I wish would go away, but they persist, knocking incessantly, until I let them in. The upshot is the difference between what I want to write and what I have to write.   

How important to the craft of writing is reading?

Aside from the given that reading is what fuels the desire to write in the first place, reading is how I learned, and continue to learn and hone my craft: Pay attention to words on a cellular level, how they are strung together, to realize the music and poetry of prose, take note of what is explicitly written on the page, and how what’s left unsaid can speak volumes. Narrative forms, both traditional and unconventional, offer new possibilities for construction, as do encounters with "rules" being broken. And endings—whether it be the end of a sentence, paragraph, chapter, or the conclusion—how and why did it pack such a punch? 

How does the intersection of writing and teaching affect you?

When I was first invited to teach a writing workshop at the School of the Arts, I deliberated. I never aspired to teach, but reason won out. One class, one semester. Even if I loathed it, I’d survive.

Within minutes, I knew I didn't loathe it. The students’ enthusiasm was exhilarating, infectious, and I soon came to realize how editing their writing rendered me more adept at editing my own. When I find myself grappling with something seemingly trivial like a transition or a clunky line of dialogue—which is not, in fact, the least bit trivial—I'll think back to whatever suggestions I made to students who’d encountered a similar stumbling block, and I take my own advice. Student improvements remind me that writing is a process of writing, rewriting, and revising. In seminars, when a student offers an insight or interpretation that hadn’t occurred to me before, the symbiosis is thrilling.

What books have you read lately that you recommend, and why?

For the past month or so, I have been rereading the novels, stories, and poems that I'm teaching this semester. Rereading is wildly illuminating. I assume it goes without saying that I'd recommend all of them, but to name a few—Mrs. Bridge by Evan S. Connell is a devastating portrait of a vacuous life; Horacio Castellanos Moya's Senselessness depicts the horror of the slaughter of an indigenous population told from the point of view of a rather insensitive reprobate; Claudia Rankine's memoir, Citizen: An American Lyric, recounts, with masterful reserve, numerous incidents of lived racism to epitomize the power of what’s been withheld.

What's next on your reading list? 

The Uncollected Stories of Mavis Gallant. Generally speaking, I'm not entirely comfortable with the posthumous publication of writing that the author opted not to include in collections published in her lifetime, particularly when one of them was Collected Stories, and I'm decidedly uncomfortable with unpublished work being published without the author’s permission. But I am too much of a fan of hers to let my discomfort stop me.   

What are you teaching this semester?

Only one class, a seminar I've titled The Excruciating, in which we read work that exposes psychic and emotional pain, such as rage, injustice, grief, humiliation, and guilt. In addition to those previously mentioned, and among others, we're reading Clarice Lispector, Natalia Ginzburg, Brian Moore, Toni Cade Bambara, Chekhov, Cheever, O'Connor, Roth, Munro, Gallant, and poems by Mona Van Duyn, Lucie Brock-Broido, and Marina Tsvetaeva.  

What are you working on now?

I've been busy with side-writing for pre-publication, but prior to embarking on the novel, I'd written the first drafts of a couple of short stories that address unfortunate political circumstances of the past, and I have notes for a few more that do the same, all in very different contexts. I'm anxious to work on them further because I haven't written short fiction for a long time, and because I'm plagued by our current political hellscape.  

Which three writers/academics, dead or alive, would you invite to a dinner party, and why?

I laughed at this question because I've often said to my students that a vast expanse of great books were written by detestable people, but we can treasure the writing without ever wanting to have dinner with them. To put living writers on the invitation risks offending friends, so I'll go with two dead academics, Bertrand Russell and Rosalind Franklin, and one, Jane Goodall, who, I'm happy to say, is still alive and, I hope, well.