Notes on Reading Julie Macfie Sobol & Ken Sobol’s Love and Forgetting

While Love and Forgetting was in my stack of current reads, I listened to the World Book Club’s podcast edition of a discussion of Albert Camus’ The Outsider.

Camus is someone whose work I associate with formal study, not pleasure, but Harriet Gilbert’s interviews draw me into subjects I don’t seek out independently, and in this case it felt like literary kismet, to listen to scholars and readers and biographers discuss absurdist fiction, while I was engaged with Julie Macfie Sobol and Ken Sobol’s memoir.

What is our purpose? Where does meaning lie? What makes a marriage when one partner cannot access the memories that comprise that shared history?

These are the big questions which hover, but more specifically, Love and Forgetting is concerned with the years which precede and follow Ken Sobol’s diagnosis of Lewy Body Disease (LBD) in 2007, which he and his wife chronicled in the early years and which Julie Macfie Sobol concluded, when he was no longer able to contribute personally to the project.

“Writing helps. I wanted to get it all down, and to get it right. There is something relaxing about the simple act of nailing down a chronology, especially when trying to describe a progressive disease, where time itself is such a large part of the story. As I type, I gain a better sense of how much denial and displacement had sometimes affected me during a difficult period.”

That makes sense, for writing was at the core of Julie and Ken’s lives and an activity that they not only valued individually but which provided another layer to their partnership, as they so often collaborated on projects.

In 1994, Looking for Lake Erie: Travels around a Great Lake was published. The authors’ photo, dated the same year, was taken by their daughter, Corry (who also makes an appearance on the pages of Love and Forgetting).

The narrative reveals their enthusiasm for exploring, for keen observation of human detail, and their willingness to experience both the grit and the wonder of this southern Great Lake. Clearly they are intrigued by what can be glimpsed beneath the surface; the intersection of a wide variety of experiences (geographical, historical and cultural) recorded in these pages reveals two minds which expressed curiosity and welcomed complexity.

Ten years later, Lake Erie: A Pictorial History was published and, again, an authors’ photo snapped by their daughter is on the backflap. The events shared in Love and Forgetting actually begin (following a brief glimpse of the couple meeting in 1959) in 2002, while they must have been collaborating on the travel writing in this volume.

(I spend too long staring at photographs when I read memoirs. I want to see what is caught in that still image, contemplate all that is not caught, all that cannot be known in that moment of stillness.  I guess I’m looking for clues too, searching for meaning.)

Usually when I write about books, I adopt the practice of referring to an author by a last name, believing that as a reader I do not have the privilege to refer to the author by a given name because we have only become acquainted on the page. It seems rude, without a personal introduction, to assume that I could address someone by their first name.

But here, I feel as though it would be rude to use the Sobols’ last name. It feels as though this memoir is an invitation into something intimate and raw, and they have introduced themselves on the page as Julie and Ken.

Julie writes in Love and Forgetting about searching elsewhere for strength and meaning.

She recalls a situation in her family history which parallels the experience she is having as a full-time caregiver, her great-grandmother’s responsibility for the care of her own husband, wheelchair-bound and clouded by dementia.

“And wasn’t there something about him in one of those old letters? The recollection sent me rummaging through my store of family memorabilia until I found what I was looking for: a letter from my great-grandmother to my grandmother, the one after whom I was named.”

When we are pressed, we seek support in unlikely places. It’s easy to imagine Julie rummaging through boxes and envelopes, looking for an answer, unfolding one letter after the next, much as I study photographs for clues.

There, in a letter dated c1900, a woman writes of being overwhelmingly discouraged and tired from the responsibility of caregiving. “He don’t seem to have any mind at all: I can’t sit in the room with him without having to get up and do something for him every five minutes.”

It’s easy to understand how these words, written by a woman more than a hundred years ago, a woman unmet, other than on this handwritten page, could reach out and touch a reader (and, then, another reader, and many more).

What is not easy to understand, beyond facts and definitions, is how one copes, from how one manages the startling disruption of rest in a given night to how one makes sense of all this senselessness in a broader sense.

Ken poses but only answers some of the questions in his segments of the narrative. For instance:

“Final question: what is a Lewy Body? That’s a snap. A Lewy Body is “an abnormal deposit of a protein called alpha0synuclein in the part of the brain that controls thinking and movement.” Put that in your corncob and smoke it.”

LBD was recognized as a separate disease in the mid 1990s (whereas, in contrast, Parkinson’s was isolated and described as early as 1817 and Alzheimer’s Disease around 1911). This is interesting and informative, but it is not what readers need and want to know.

And, yet, readers might not want to know either. This is hard stuff. And some questions remain unanswerable of course.

“Today’s term is ‘anticipatory grief’. My tears are for present pain and the pain to come,” Julie writes.

Still.

“Somewhere, even with dementia, there has to be room for life to enter between the cracks.”

And those glimpses of life are often sweetly satisfying. I found myself observing, while reading, that Julie has a fantastic sense of humour.

And, yet, I felt it was an awkward observation as soon as I had expressed it.There are no laugh-out-loud moments in this narrative. But I found myself smiling far more often than the subject matter seemed to warrant.

In hindsight, I think this must be an indication of the woman behind the words, rather than the words themselves. Perhaps it is the cultivation of the habit of looking for progress in a situation characterized by regression.

“’I thought at first you must have done it, Mrs.Sobol,’ she said, turning to look at Ken.
Before I could correct her, he spoke up.
‘No, I did it by myself!
Amazing. Progress.”

Love and Forgetting does not aspire to be a central resource, although the low-profile of the disease in public awareness would indicate that it must have been tempting to produce a text many times the size of this memoir.

Nonetheless, this focus is both thoughtful and appreciable. The afterword does include a list of “Eight Suggestions for Healthcare Professionals”, and there is a list of “Further Reading” provided. But this volume is focussed and its purpose clear, which makes for a powerful and resonant experience.

With clarity and honesty, in a bold and intimate voice, the voice of Julie-and-Ken, this couple’s memoir certainly does raise awareness of LBD but, above all, it is a love story, reminding readers that we all require support when faced with life’s absurdities. Love and Forgetting offers that support too.