I begin to stutter and babble at the same simple question, a question I know is coming;
“What is Remembering Sophia Jane about?”
It’s complicated, I think, it’s a braided non-fiction essay about Alzheimer’s, the nature of memory, and memory’s connection to creative nonfiction, but that’s not all— I say, feeling like some sort of a game show host, it focuses on my grandma Jane, who had Alzheimer’s and my relationship with her.
“So it’s about your grandma, Alzheimer’s and the role of memory?” That sounds nice, I think to myself, but no.
It looks at the role of memory and the nature of Alzheimer’s through my grandma Jane so that I can talk about my dad. It’s about my dad, about what I know and don’t know about him, what I saw, and what scares me. I write this version of what I remember so I’ll never forget, it looks to memory to confront my fear of my dad forgetting. It’s about my dad, it’s for me.
Literature on Alzheimer’s, dementia, and memory is extensive, each concept complex and impossible to encapsulate through a single source or narrative. With the complexity of subjects and multiple perspectives in my narrative I chose to structure my essay as a non-fiction braid, which worked extremely well as a means of weaving in the three distinct voices the essay focuses on: my grandma, dad, and myself. But little else about my essay fits so neatly into a certain category; my use of Alzheimer’s research, scenes of my Grandma Jane suffering with the disease, and fear for my father, both fit and defy the typical care giver narrative that exists in fiction and nonfiction, research and culture. Deborah Cunningham writes about losing her mother (both metaphorically and literally) to Alzheimer’s in her essay “Remembering Mother;” in it she wrestles with the version of her mother she is losing but depicting through a narrative reconstruction while examining what her role as a daughter means when she is forced to become a caregiver. Cunningham’s narrative fits what Elizabeth Klaver in The Illness Memoir says constitutes an illness memoir, or caregiver narrative. That it is a work whose “authors are ill with a potentially terminal disease” or are caretakers (loved ones or doctors) of someone who is”(Klaver 3018). Because these narratives often have duel perspectives the genre, they typically “Include not only the patient memoir but also the caretaker memoir which “finishes” the story” (Klaver 308). Key concepts and terms in my essay match those of a typical illness memoir: Alzheimer’s, memory loss, dementia, narrative, caregiver, and memory, but I am neither an Alzheimer’s patient nor caregiver. By Klaver’s definition that excludes me from the genre; however, I write of both. I look at common aspects of what Alzheimer’s reality is: a reality of fear, uncertainty, and doubt, and I too reconstruct my grandmother to preserve my father, thus filling a sort of gap in the genre.
Lisa Genova, author of the fictional novel Still Alice writes the unimaginable, an
Alzheimer’s story narrated by Alice, a character suffering from Alzheimer’s from start to finish, and although the nature of my non-fiction essay and her fictional story connect in many ways I am just focusing on the response Genova gave when asked why she chose to narrate Still Alice through an unreliable main character. Genova says that her decision to have Alice narrate “was the most powerful choice” and while reading “you should feel her confusion and frustrations and terror,” so that through this unreliability in narration the reader can “get to sit in that seat,” the seat of an Alzheimer’s patient (Genova). I chose to write an atypical narrative focused on Alzheimer’s and a caregiver, of a father and a daughter, on memory and loss, to have readers “get to sit in” those seats. I wrote from my own unreliable memory to bring the reader closer to the very questions that inspired me to write.
Alzheimer’s research and its role throughout my essay serves as a fear I have for my dad, and a thing I watched in my grandma. How Alzheimer’s changes the narrative of people’s lives and their ability to tell stories caused me to ask the same questions as Cunningham: “what happens when humans lose the capacity to remember and story their own lives,” “are the stories real? Are they ethical? Am I being reflexive enough” ( Cunningham 446). I asked myself those same questions as I wrote, am I showing who my father is as person, as a father, as a son? I ask in my essay, “if he were to forget all of me and remember that, like my grandma Jane, would that memory still be sweet? Would I look at him like I looked at her, or could I be happy to sing along pretending he remembered.” I might not be a caregiver or Alzheimer’s patient but the fear of losing, the anxiety of what and how memories and narratives preserve is very much real throughout “Remembering Sophia Jane.” In my essay I write, “I never want to think of my dad and remember anything less than the person I love and am loved by. I don’t want two versions of my dad, so that’s why I am writing” and in a way that idea is at the core of all illness memoirs, to write of the horrible, the incurable, to save and reconstruct the elements unchanged and remembered.
As I read Cunningham I realized when it comes to Alzheimer’s, forgetting, and even memory, it is never about the person we lose but that “Through these memories, through these stories, my mom is again made whole, and I am made whole along with her,” and so to write of my grandma and to write about my dad both preserves someone lost and a person I never want to lose (446). As Cunningham “makes whole” a part of her mother through story, I too preserve key features and moments of who my father is to me and what I watched him do, despite the fact that I am not a caregiver or patient writing the narrative.
The nature of memory is another topic explored throughout my capstone, although not explicitly; its role and nature became a sort of current, an obvious but unseen force throughout the piece moving and pulling the essay toward its emotional climax, the address to my father: “Dad there was never a day in my life that you didn’t make it absolutely clear that you loved me.” The piece is not filled with research on the nature of memory, nor do I directly discuss its role in my retelling and reflections; however, because my impression and understanding of memory was shaken by its role in creative non-fiction and through what my role as narrator meant in this essay, the piece as a whole works to illustrate characteristics of memory, and what its authority means in regard to creative non-fiction. The problem is that even for a healthy person, memory is a construct and an unstable one at that. And the narrativization of memory requires both conscious and unconscious misremembering as the images in the writer’s head are organized into a story. Writer and professor Reza Aslan says in the non-fiction craft book Write Now, “your memories are lies you’ve convinced yourself are true,” and that we “irrevocably alter the facts of an event so that often what you remember is far from what actually happened” (123). Our job then, my job then, is to reflect on what I remember and why, to understand that my memory is a source in creative non-fiction but an imperfect and liminal aspect of the things, instances, and people I recreate through it.
The core of my project’s emotional drive was created through the constant implicit conversations the piece has on the nature of memory “the scary thing about memory is not that it is faulty, but that is liminal. The scariest thing about who my father is to me could be that he could forget it all.” The liminality of memory, both in natural degeneration and through disease like Alzheimer’s, means I had to confront my own limitations of memory in order to preserve my dad. I admitted what I am scared of, and the limitations of my own memory to let go of what I thought I could never forget, and write it so that it could become true. The characteristics of memory are woven into my reflection on the distance I felt towards my grandma Jane, in the things I remember about my dad, and through the metaphors that accompany the Alzheimer’s research incorporated throughout. I write a version of my father not to save him but to save him for myself, and in that admission, I realized my control over my own memory of him is not up to me. Therefore, I write.
What I wrote matters to caregivers, patients, and other writers, and fills an important gap present in the genre of illness memoir not because it holds a type of absolute truth or authority but because it is reflective of why we remember. Cunninghan says, “good stories are about the past, told in the present, but always yearning, straining, toward a possible future” and good nonfiction is about the past of what we remember, present reflection, and analysis of how those memories and reflections shape not only who we are but who we will be (446). My favorite section of “Remembering Sophia Jane” is a list I write to my father of things I will never forget:
That time you stuffed maps in my shoes, so I would be tall enough to ride the rock n’ roller-coaster at Disney
When you taught me how to parallel park and made me cry
The lesson on family chains
Pretending not to know each other in Arby’s so we could use two coupons
In it I am not listing everything or even the most significant features of who my father is, but through it I attempt to “make whole” a part of my dad. As I and others read it, who he is to me is made clear and through that I have preserved my dad, my grandma and related who they are and what that means to me. Just as Genova found strength through an “unreliable” character, I too found strength in accepting, my own unreliability, and the liminality of my own memory which is not for a moment useless as I write the possible future. I embraced the parts I remembered and misremembered to construct a meaningful whole. Finally through extensive research and crafting process for a braided non-fiction essay, I found the words that express what I’ll never forget.