In January 2014, I read an essay in The New York Times by a man diagnosed with terminal cancer. His words resonated with me in a way no others had. My husband also had terminal cancer and this man, the neurosurgeon Paul Kalanithi, articulated our dilemma with such precision I felt he had been privy to my thoughts.

Marie-Elisabeth Lei Holm’s Spring 2021 Intima paper titled “Temporality, Reader Recognition and Literary Consolation: A Reading of Paul Kalanithi’s When Breath Becomes Air with Narrative Medicine” explores, in the context of narrative medicine, the book that stemmed from the essay I read that January day. When Breath Becomes Air, published posthumously in 2016 by his widow Lucy Kalanithi, received literary acclaim, including selection as a finalist for a Pulitzer Prize. For all the praise the book received, I found its beauty and power to be the truth it so plainly spoke.

Holm echoed this truth when she considered “how the onset of serious illness makes Kalanithi come to understand time in an entirely new way. This change in perspective, [she argues], can be illuminated by turning to narrative medicine insights, particularly, the field’s emphasis on the ‘gaps’ that exist between scientific approaches to illness and the subjective, lived experiences of illness.”

It was in those gaps, between our lived experience—the crushing uncertainty about how long my husband would live, the daily reality of his intolerable pain, and the abrupt shift from a life of joyful ease to one spent contemplating death—and the oncology profession’s standards of care, first-line treatments, and numeric pain scales that my frustration festered.

My Field Notes essay titled “We Can Offer You Some Helpful Resources” in the Spring 2021 Intima explored my frustration at feeling that the hospital was kicking my husband out because he was deemed too sick to be helped. The people initiating that decision seemed unwilling to listen to my refrain that I could not care for him at home by myself.

And into the gap I tumbled.

But even for the many months leading up to those moments in the hospital, we had lacked the practical information we needed to decide how to spend our days. We faced the same dilemma, and lived in the same gap, that Paul Kalinithi described:

I knew I was going to die – but I’d known that before. My state of knowledge was the same, but my ability to make lunch plans had been shot to hell. The way forward would seem obvious, if only I knew how many months or years I had left.

In one respect, no human could answer that question. But it seemed the clinically-trained humans went to elaborate lengths to evade it all together. And that left me deeply frustrated.

Perhaps I unwittingly created my own narrative medicine-like program to fill the gap as I sought out a writing group to channel my frustrations, and I sought essays like Kalanithi’s for the solace and connection the oncology profession did not offer. I wanted to know if someone else had lived through this experience. Holm, just like Paul Kalanithi, touched upon the reality of how patients and caregivers actually live—in the gaps far from a sterile exam room.—Renata Louwers

Renata Khoshroo Louwers is the editor and co-founder of Months To Years, a literary journal that explores grief and loss through nonfiction, poetry, and art. Her essays have appeared in STAT News and The Philadelphia Inquirer. Her work has also been anthologized in My Shadow is My Skin: Voices from the Iranian Diaspora (University of Texas Press, 2020). Her Field Notes essay "We Can Offer You Some Helpful Resources" appears in the Spring 2021 Intima: A Journal of Narrative Medicine. Discover more of her work on Facebook, Twitter @RenataLouwers @MonthsToYears and IG renatalouwerswriter and monthstoyearslitmag.