By Joanna C. Valente
He didn't remember me. Sometimes, there would be glimpses of him coming out of his body and I could see in his eyes that he recognized me, but those moments were becoming more and more fleeting. Moments of remembering, of having memory, were rare. I would push the grocery cart around every week, following him as he picked out his favorite foods (vanilla wafers were a must), and listen to him talk to himself. I would agree and nod. Most of the time, I didn't know what he was talking about or even understand what he was saying.
It didn't matter. I didn't need to understand. He didn't need me to understand. Manny was my great uncle, a Greek immigrant, who worked as a medic in World War II, then later as a mailman. He never married and lived alone in his one bedroom apartment in Yonkers, New York - only a few minutes away from my parents and my yiayia, his sister. When I grew up, there was an unspoken truth about him: He was "different." We didn't speak about why. No one called him "special" or said he had special needs or a disability. He just was. And that's what mattered. He was just Manny.
When I was in high school, he was found inside his apartment one day, muttering to himself. It quickly became clear he had dementia. My mother found him on the hardwood floor. He was alone. He was babbling. He was surrounded by forgotten garbage. He was a human suffering in his own humanity, in a world that doesn't cater to those who don't fit neatly into an able-bodied society.
Soon after, he was moved into a nursing home where he eventually died. He lived in that nursing home for close to 10 years. No one wanted him to be there, but the question any caretaker and family member asks themselves when a loved one is diagnosed with dementia or Alzheimer's is this: How can you take care of someone who can't remember themselves? Who can't remember to eat or go to the bathroom? Unless you have 24-hour care in your home (which requires a lot of money), it's impossible. That fact alone, the impossibility of that kind of care, is devastating.
Everyone feels like a failure. How can you not feel like a failure when you feel like you're abandoning someone you love, even if it's in their best interest? Even if you aren't actually abandoning them, but allowing them to continue living. But that idea of living is different than thriving - and what does it mean to live without your identity, your sense of self, your memory? What does it mean to exist inside a shell, to have your spirit trapped inside a place in the body that is no longer accessible?
When you don't remember yourself, your agency is lost. This means we aren't in control of our bodies anymore - our bodies have become something or someone else's, but whose? Caretakers, in a legal sense: Our bodies are controlled by our caretakers, by a seemingly indifferent universe. But what does consent mean in those situations? Legally, we allow others, usually loved ones who act as power of attorneys, to control our bodies and make major decisions; yes, we have rules for this, but rules can't govern the spirit or the mind. They can't govern what you don't see. They can't govern ghosts, or the ghosts of ourselves.
In those moments, it can feel as if your body was never really yours to begin with. If you believe in any kind of God, it feels like an awful trick, as if God is Puck from A Midsummer Night's Dream putting an ass' head on you and watching what happens. In many ways, I started learning about consent because of Manny, because of his dementia. I didn't want to, but I was.
My mother would drive me to visit Manny in his nursing home often. I grew to look forward to the visits, even if I pretended I didn't want to go as a depressive, moody teenager. Most of the people in the nursing home were like Manny, unable to remember, unable to care for themselves. And if they could remember, sometimes it seemed worse - to be stuck inside a body that no longer does what you want it to. I couldn't decide which fate was better, which luck of the draw I wanted as I got older.
This fear of forgetting is exactly why we write about ourselves, detailing our lives even in obscured details, as a way to keep a tab on ourselves even when we can't. What's the point of other people remembering us if all we exist in is a void of darkness? It was Nabokov, after all, who told his friend Edmund Wilson in April 1947 why he wrote his memoir, Speak, Memory: "I am writing two things now 1. a short novel about a man who liked little girls - and it's going to be called The Kingdom By The Sea - and 2. a new type of autobiography - a scientific attempt to unravel and trace back all the tangled threads of one's personality - and the provisional title is The Person In Question."
Nothing exists as stationary, our minds are always changing, even with dementia. Manny's life was measured in black and white photographs my yiayia kept, his endless stories he would tell me, his repetition. As Nabokov illustrated in his own memoir, if the self is only endless projections, like a projector showing us a film of who we're supposed to be and who we want to be (and where our self meets somewhere in the middle), what does this mean?
I of all people understand how flawed memory is. We often misremember details, black them out, or purposefully color them in, all as a way to survive and navigate trauma. As an assault survivor, I often have questioned my own memories, both happy and traumatic ones. Like many survivors of trauma, I blocked out certain details for a long time, usually details during the assaults themselves, because it was easier not to remember. Nabokov does the same thing when he recalls the idyllic events of his life, painting a gorgeous memory for us that may not be accurate; here is he painting an exquisite picture of his mother:
As often happened at the end of a rainy day, the sun might cast a lurid gleam just before setting, and there, on the damp round table, her mushrooms would lie, very colorful, some bearing traces of extraneous vegetation—a grass blade sticking to a viscid fawn cap, or moss still clothing the bulbous base of a dark-stippled stem. And a tiny looper caterpillar would be there, too, measuring, like a child’s finger and thumb, the rim of the table, and every now and then stretching upward to grope, in vain, for the shrub from which it had been dislodged.
Memory can only be as accurate as accurate as we allow the exercise in remembering to actually be, which is mutable at best. In 1966, Nabokov said, “As a writer, I am half-painter, half-naturalist." He also wrote about butterflies in Speak, Memory - which are intrinsically beautiful, but also indicative of change (and change confuses memory and how we remember):
I have hunted butterflies in various climes and disguises: as a pretty boy in knickerbockers and sailor cap; as a lanky cosmopolitan expatriate in flannel bags and beret, as a fat hatless old man in shorts . . . Few things indeed have I known in the way of emotion or appetite, ambition or achievement, that could surpass in richness and strength the excitement of entomological exploration.
So, what does this mean, trying to invoke beauty into memory, or take out the grotesque? What does it mean, then, when we talk about illnesses like dementia or PTSD, or our brains post-trauma? With any trauma or illness, we are forced to forge new identities and reinvent ourselves; if we don't, we die. How can you remain stagnant when parts of your own agency are taken away by something or someone outside of you?
Our minds yearn to be transcendental, and transformed, into magic. We want to live in a curated fairy tale whenever possible, which means much of our power as humans is distortion, is storytelling. Much of our power as humans is memory, and the ability to recall, regardless of whether this recalling is truth (and whose truth?).
A better question, then: What does it mean to our humanity when we can't remember? This doesn't make us less human, but it does take our power and our agency away. My own misremembering of my assaults has been both powerful as a coping mechanism and a means to survive, but also as a way my own identity shifts, for better and worse. Who are we without our memories and our "real truths?"
When Manny died, we were relieved. We were relieved as much as we were devastated. Manny was in his late-90s when he passed, and in some ways, you could hardly say the death was tragic, that being released from his own mind-prison was unfair. If anything, he was free, regardless of where he went after he died. I remember throwing a flower into his open grave, the soil freshly dug, the air smelling of earth - both sweet and rotten.
I cried. But I didn't cry long, because I wasn't sure what or who I was crying for. I had mourned him a long, long time ago; I wasn't sad for his body or the fact that his body could no longer move or breathe. Years later, I realized I was sad for his lost memories, for his lost self. He never wrote a memoir like Nabakov, he didn't leave behind a long journal of his experiences during the war, or if he ever fell in love or what his favorite childhood memory was. He didn't leave behind anything except for our memory of him, a faulty legacy in the brains of bodies that will also forget.
People warn you about this, about forgetting them, begging you not to. We lose each other in the noise of our lives long before we lose our minds. When we part, we pray and wish each other luck, do spells to direct energy to the right places, hoping for the best. Even on a daily basis, we say phrases like "I'm always around," as if our self is capable of that. While we might mean it, for as long as we humanly and bodily can, our bodies sometimes strip ourselves from us. That is perhaps what I'm afraid of most: losing myself.
In all my art, like many artists, I explore identity. I explore what it means to be alive in a body in a place in a time, locked inside a structure we can't control, to have a fluid identity in a rigid society (a society that still questions interfaith and interracial relationships and queer bodies and different backgrounds and religions and skins). I, like you, am trying to find agency when everything around us vies for our freedom and our minds.
What's the solution, other than science trying to find a cure, than writers trying to scribble down their lives and truths on paper and in the vast space of the internet? Dementia is just one face of finding and losing our true selves, of finding and keeping love, of trying to hold and make a future.
We try, constantly, to be our perfect selves in a world where capitalism pushes us to the impossible goal of "having it all" and being perfect versions of humans. That idea takes away our vulnerability, because how can we truly be vulnerable when we search for the impossible, and try to be the impossible? In my uncle's dementia, I didn't find hope or a cure or an answer, but the realization that wasting time is the truest crime.
This realization, the fear of dementia, gave me the freedom of "coming out" as queer and nonbinary, to write about assault and trauma, to write about abortion, to make hard choices that I know will make me more fulfilled ultimately. It's not bravery, as some people will call it, the will to be yourself, but it's a decision made out of the fear of forgetting everything, of never having been to begin with.
And that's the only thing I come back to, after every trauma and heartbreak and change and anxiety: Don't waste time on things you don't love, on things that don't love you, on something that isn't helping you figure out your identity and your happiness. Legacy, that perfect history and reputation (whether in textbooks or curated on a social media feed), will be forgotten too. Because everything passes, even you. And what's the use of living a fake life when that life will be forgotten by you and everyone around you anyway?
Joanna C. Valente is a ghost who lives in Brooklyn, New York, and is the author of Sirs & Madams (Aldrich Press, 2014), The Gods Are Dead (Deadly Chaps Press, 2015), Marys of the Sea (The Operating System, 2017), Xenos (Agape Editions, 2016), and Sexting Ghosts (Unknown Press, 2018). They are the editor of A Shadow Map: An Anthology by Survivors of Sexual Assault (CCM, 2017), and received a MFA in writing at Sarah Lawrence College. Joanna is also the founder of Yes, Poetry, a managing editor for Luna Luna Magazine and CCM, as well as an instructor at Brooklyn Poets. Some of their writing has appeared in Brooklyn Magazine, BUST, Them, Prelude, Apogee, Spork, The Feminist Wire, and elsewhere.