Changing the Future of All Minds

Life is made up of thousands of memories, if not millions. The smell of a favorite childhood landscape. The touch of a loved one’s hand. The sound of a lover’s whisper. The sight of a baby’s smile. The ache of loss and heartbreak.

Do such memories define us? They often seem to, and yet – what is a memory? Amorphous connections inside the brain? Electrochemical signals? Synapses connecting with the patterns of things that have happened to us? These are – of course – questions that don’t have a fully satisfactory answer. What we do know is that when someone we love begins to lose their memories, it hurts. Though they might sit there in a familiar chair, in a familiar house, with their body alive and well, their life seems to be fading away. We feel confused and disconnected. We feel as if we don’t know them or as if they don’t know us. It’s painful.

Dr. Pauline Boss has a term for the pain we feel in this: ambiguous loss. She writes, “Human relationships are ruptured indefinitely by ambiguous loss.” Rupture. That’s a powerful word. And yet, when someone we love suffers from Alzheimer’s, that loved one is simultaneously present and absent. These dueling facts pull us in opposite directions. Have we lost them or not? Is it fair to mourn someone who is still alive? The questions go on and on.

When the plaques and tangles of Alzheimer’s take over a mind they destroy the very connections that we’ve spent a lifetime making. It is the cruelest fate. How do we explain such a thing? John O’Donohue – the Irish poet and philosopher – spoke of such questions as lanterns, illuminating a path forward. I believe that. And I believe that the questions we ask about memory and memory-loss are lantern lights, guiding our path toward healing, understanding, prevention, and a possible cure.

When I use the lantern of question, I often discover a story. Story helps make sense of the senseless, and can provide meaning in tragedy. Stories are our family legends, our beliefs, our myths. We share such stories in community and read them privately. Either way, the unique power of story can both help and heal as we journey through the maze of Alzheimer’s and memory-loss.

Medicine is predicated on questions and theory. Before I was a novelist, I was a nurse with a master’s degree in pediatrics. Folks tell me those careers seem incongruent, but it turns out both are about family, stories, and the inner secrets of our lives. My thesis and my work focused on head injuries. It was there that my fascination, awe, and also a healthy fear about the fragility of memories, began.

It was then that I began to see the power of story to guide us, to allow us to find answers, to make meaning, to make sense, and to open our eyes to something greater guiding us in the direction of truth. Sometimes those stories are “real” and sometimes (as in my case) they are fictional – a resting place to ask the larger questions in a context where the answers can unfold without the constraints of familiarity.

Memories come and go; they morph and change; they appear and disappear without warning. And when I saw families suffering when a child with a brain injury seemed no longer theirs, I began to ask questions that I’m still asking today. But a lack of sufficient answers doesn’t mean we stop asking. As Rumi wrote, we can live into the questions.

My latest novel– The Favorite Daughter – explores a family that must decide whether it will come together or come undone during an Alzheimer’s diagnosis. This story was my attempt to make some sense of what seems senseless – the disintegration of personhood through memory loss. My characters try to gather their loved one’s memories in a Memory Book with stories, working their way through a life full of stories that they are slowly losing. This is what we do – try to grab onto what is disappearing right before our very eyes. Can we? Does this help at all?

Well, if this isn’t the answer, then what is?

We must do the scientific research for prevention and cure and we must also tell our stories. These are not mutually exclusive endeavors. As we struggle to persevere in the midst of ambiguous loss, we must immerse ourselves in some concoction of truth, stories, and science. I believe with my whole heart that stories will be a source of help and healing in the battle against this cruel disease that is taking our loved ones from us.

Patti Callahan Henry is a New York Times bestselling author. Her most recent novel, “The Favorite Daughter,” invites readers to meditate on the unequivocal power of our memories and the myriad of ways they can influence each or our chosen paths in life.

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