The Recurrence of Doubts: The Edges of Privacy When Writing About a Parent by Jennifer Bowering Delisle

“Heart swelling emotion,” she wrote back. “Sincere pride in you.” She was honoured. I was relieved.

While I did not yet know that the essay would be the basis of a book largely about her illness and death, in the years since I took this early approval as a kind of blessing. But I did this tentatively. My mother could no longer consent, would never read everything else I’d written. Instead, I had to make a series of ethical decisions about where I would go, what I would include or omit, and what I believed she would be okay with. The process of writing my essay collection, Micrographia, was one defined by doubt.

I am grateful for this. The doubts are, for me, a measure of care. The questions I asked myself through the process did not always have answers, but it was the asking that was urgent and necessary.

Where are the story’s edges?

Whose story is it?

Why am I writing this?

*

In the book, there were things that I did not want to write about. So I didn’t.

For anyone who undertakes such a writing project, there will be lines that you do not want to cross. It may be the line between preserving a relationship or changing it forever. It may well be the line between doing someone harm and taking the guts out of the story. These lines will be blurry, messy, jagged. The locations of these lines will be different for everyone and are likely to change over time. I had to anticipate where the line would be for me the night before my book was released, or the moment my aunt picked it up to read it, or an interviewer asked me a hard question. This was the edge of my story. I put my chair down there.

In this essay, there are things I don’t want to write about. So I won’t.

I could tell the story I wanted to tell in Micrographia without including things that felt like violations, or things that I thought might do harm to the people implicated, or my relationship with them. The story that I wanted to tell was one of motherhood—hers, mine, how the mother-child relationship is constantly one of simultaneous connection and disconnection. How becoming a mother while losing your own makes your life seem like a thread in a web, a note in the middle of a song. The story that I wanted to tell was one of grief—of how losses collide and alter each other, of the strangeness of grieving one not yet gone—of the strangeness of any grief, when it is your own.

Where are the story’s edges?

*

In one of the essays in my book, I describe grappling with the shift in my and Mom’s relationship that came with her disease—multiple system atrophy, or MSA. I write, “I don’t feel equipped for the physical intimacy, the viscera of this labour. Caring for my child is different. There is no history before his need. My mother and I have gone through the process of growing apart as I grew up, of becoming separate. Her body, once my home, is now her private dwelling.” Writing can be similarly visceral, pushing the boundaries of another’s privacy in uncomfortable ways.

North American culture tends to value individualism. Beyond the legalities of sharing personal information, we are typically taught that an individual has a unique personality and identity whose agency and privacy are inviolate. But we are also extremely social beings. Unless, perhaps, you were a castaway on a deserted island, it is nearly impossible to write your own story without including someone else. Not only do we interact with other people constantly, our very identities are shaped by our relationships with others, particularly our parents. Who I am, who my mother was—both are intertwined with the existence of the other. In this sense, my mother’s illness and death—a profoundly impactful event in my life—is my story as much as it is hers.

This is not a free pass to appropriate another’s story. I cannot know Mom’s thoughts or feelings or the experiences of progressive disability and terminal illness, apart from what she told me. Nor would I attempt to write from her perspective. But seeing her decline, knowing that I was losing her, and dealing with her decision to have a medically-assisted death—those are all experiences that are my life to share. For me, ensuring that I was always writing through my own lens was key to doing so with respect.

Whose story is it?

*

Keeping everything concealed is not the only way to honour or love a person. Writing about them can also be an act of tremendous love. This was, in part, my goal—to pay tribute to my mother and to share her—our—experience.

My mother had medical assistance in dying (MAiD) in 2016, just five months after the government of Canada passed legislation to legalize it. I did not know anyone with a loved one who had made this choice. There were no essays or books or poems that I could find that shared this unique experience. Grieving a parent is already disorienting, despite its near universality. Unmoored from any rituals of culture or religion, writing was my ceremony.

In the years since my mother’s death, Canada has dramatically and controversially expanded the MAiD legislation, making eligible people with conditions that are not imminently terminal. I stand with the many disability activists fighting this change and the lack of supports that has pushed some with disabilities to feel that death is their only choice or to feel pressured to die. In the midst of this important public outcry, how can families of those with terminal cancer or ALS or MSA, who choose MAiD on their own terms, prepare themselves and navigate the complex feelings? We need more stories—all of the stories—not as models but as comforts.

These are the things I wrote when I submitted the book to publishers. They are true. But they do not form a complete answer. I wrote this because I am a writer. Because making art is who I am and central to my way of being in the world. Does this render the work selfish? exploitative?

Why am I writing this?

Doubts over whether to proceed with writing about others run counter to the common idea that art is its own justification. For me, art need not justify its own existence, but the value of art itself also does not trump any potential harm that it may cause. In other words, the answer to “why am I writing this?” can simply be, “art.” But I cannot give the same answer to, “why am I writing her?”

My mother’s disease gradually eroded her body’s functioning over the four years she lived with it. Each month she lost more control—over her ability to drive and cook, then to walk, then to feed herself. Even her control over her own emotional expression was lost—a symptom known as “emotional incontinence.” She was also slowly losing control over her life, no longer able to do many of the things she enjoyed, or to live in her own home.

When we put our words down on paper, we have control of the story that we are telling—even if we haven’t been in a position of power in that story before. To take on this responsibility ethically is not to assert that authority but rather to occupy another position of doubt. How can I do right by a person whose ability was eroded in a way I have never experienced? Is a person who is dead beyond harm, or are they rather the most vulnerable of all? These are questions that I do not have clear answers to, and this is why they are useful and important. They are the questions that I must never stop asking.

Where are the story’s edges?

Whose story is it?

Why am I writing this?

*

When I was a young girl, my mother often painted pictures of me and my brother from printed photographs. I don’t remember her ever asking me for permission, though she may have done so. I do recall a conversation we had when she was working on a painting of me and my baby brother in the bathtub. I couldn’t have been more than four or five in the picture, and probably not much older when she began the piece. I didn’t want her to paint it. I remember her offering to change the position of something—my leg or the water—so that less of my naked body would be seen. And I remember thinking that she didn’t understand, that it was not my body but the act of bathing with my brother that embarrassed me, that felt too private. In the painting, she saw the children that she saw naked almost daily. Or she saw the composition, the light, the brushstrokes. I saw myself, in a kind of nakedness she did not recognize.

And this is the crux of the necessary, recurring doubt—this truth that no matter my diligence, no matter how informed my assumptions are, I cannot know what would make her feel exposed. I can only hope that she would look at it and also see the composition, the light. The gaze of love.

* * *

Jennifer Bowering Delisle’s collection of lyric essays, Micrographia, was published by Gordon Hill Press in fall 2023. She is also the author of Deriving, a collection of poetry (2021) and The Bosun Chair, a lyric family memoir (2017). A new book of poetry, Stock, isforthcoming with Coach House Press in 2025. She is on the board of NeWest Press and lives in Treaty 6 territory in Edmonton.

Photo credit Z. Ayotte