My youngest son is doing the Phonics dance with his kindergarten class over Zoom at the dining room table, and in the corner by my mother’s fancy china, I’m afraid my dog is dying.
Lucy seems okay when she isn’t moving. But her eyes are darting back and forth, back and forth, and every time she gets up, she stumbles like she’s drunk, and her hind feet drag a beat slower. I’m sitting on the floor next to her, running my hand across her fur from her head down to her ribs. It’s vestibular disease, I tell myself. She was diagnosed with it several years ago, and the vet said it could come and go. But I don’t know for sure. It could be a tumor or a stroke. It could be anything.
My eldest son, Atticus, comes over and sits on my lap. “Aw, sweet Lucy,” he says, and he strokes her head. I put my lips to his hair, breathe in the honeyed scent of the baby shampoo I’m reluctant to stop using.
I’ll give it 24 hours, I think. 24 hours, and if she’s not better, I’ll take her to the vet.
I put my hand to Lucy’s chest, feel the rise and fall of her ribcage. I feel the silk of my son’s hair against my lips. I look over his head out the window to the sky, gray as a bit of stone, to the thin, bare arms of the trees.
I’ll take her to the vet.
I’ll double mask.
I’ll find a way to pay for it.
Remember, Aunt M needs help with her bills again.
Remember, I need to prep food for after my stepdad’s surgery.
I need to pay my car insurance.
I need to pay my credit card bill.
I don’t know how I’ll pay for any of it.
It is almost Christmas.
In the background, 18 little voices sing “O-O-O is opera, opera.”
Outside, it is starting to snow.
I drop you into the memory of this day not because it’s special, reader, but because it’s commonplace. Every day for nearly a year has been some version of the same. The last ten pandemic months were a cycle of brilliant little joys and devastating losses that, for a very long time, didn’t move me anywhere but along the edges of a spiral. I defended my dissertation. I lost my health insurance and my teaching job. I applied for Medicaid and food stamps. I moved in with my parents. My relationship with the love of my life, the person I believed I was going to marry someday, came to an end. For the second time in two years, I was stripped down to nothing, and had to start all over again.
Finally, I got up out of bed.
Finally, finally, a job.
And since there is nothing to do but to work and to parent and to grieve right now, I spend all my spare time alone, writing ferociously with what little is left of my heart.
Now that I have gotten somewhat used to the pain, now that I have slowly started to heal it, what I keep coming back to is how fundamentally unremarkable it is. Just like many of you, no matter what other horrors have been happening in this country and no matter what other challenges I’ve been dealing with on my own, I’ve also been doing the hard work of caring for someone. There are things I’ve left out of my story, things I will likely return to, but for the moment, they don’t matter. What’s important is this: I am fed. I am safe. I have a roof over my head. My life during the pandemic has been utterly mundane. My story is still the story of middle-class survival in a country that is unsurvivable for the poor. It is the story of how whiteness still offers up perverse protections in a country that protects no one else. It is a story that I have the privilege of telling and of writing down.
Every time I’ve written a version of my story, I’ve thought of how many others just like mine are out there: the story after story after story I’ve read in the newspapers about how devastating the COVID-19 pandemic has been on caregivers. Because our country offers no support to caregivers, there are so many people, primarily women, who have given up their careers and their identities to care for children and disabled folks and the elderly. And while media coverage is important, the individual stories scattered across a handful of newspapers aren’t enough: they don’t give us a sense of the true scope of the problem, and they don’t tell you that the majority of those reported stories are about white people like me. The most important stories are the ones that rarely make it into the archives of the United States: the stories of Indigenous, Black, and other caregivers of color; disabled caregivers; undocumented caregivers; queer caregivers; and working class and low-income caregivers. These are the stories most likely to disappear from our collective history.
My story may not be unique, but I do live at the intersection of three kinds of caregiving: I’m living with and helping care for three elderly people and two children; my eldest son, Atticus, also has Down syndrome. Every time I read a story that is similar to mine, it is as if I see that caregiver across the surface of a vast body of water, a caregiver sinking and holding up a sign: we are underwater here, it says. We are submerged.
Like me, they are looking for some kind of salvation.
This column is the beginning of what I hope will be a collective salvation effort: not relief from the volumes of caregiver work, but relief in the form of a chronicling, a preserving of caregiver stories in remembrance and in the hopes of enacting change. I will spend the next six months gathering and sharing a handful of caregiver stories in this column; at the same time, I’ll be raising money to construct Submerged: An Archive Of Caregivers Underwater, an equitable, accessible digital archive in which I plan to house as many caregivers’ stories in the United States as possible.
The focus of Submerged will be to preserve caregiver stories from the populations that the archives of the United States have often excluded. In order to archive these stories as efficiently and democratically as possible, I’ll be using my own background and expertise in archival studies, disability studies, and minoritarian literatures, and I will consult with other disciplinary experts to build the project framework. I’ll utilize demographic data collection and analysis (while respecting individual caregivers’ needs for privacy and/or anonymity) in order to ensure the archive reaches the populations that need their stories preserved the most. In later project stages, I’ll establish significant and sustained community outreach programs and partnerships with writers and other artists so that I can seek out as many caregiver stories in as many formats as possible for preservation.
Once it’s live, Submerged Archive will preserve all submitted caregiver stories. But we’ll also operate utilizing the methodologies, principles, and hiring practices of the archivists, memory workers, and scholars who have dedicated themselves to pushing back on the legacy of white supremacy in the archives.
The scope of this project is ambitious. And aside from the help of the incredible staff at Pidgeonholes, I’m launching it largely on my own. Until I can establish the archive as a nonprofit and secure grant funding, I’m going to depend on crowdsourced funding and community support to move this project forward. I hope some of you can help me by donating.
While I believe in my project’s potential, I also believe in helping caregivers right now. While I construct the project website, establish partnerships, and seek out archivists and/or memory workers to help implement it, I’ll donate 25 percent of Patreon proceeds every month to established nonprofits currently supporting caregivers and families. I’ll also continue to donate a quarter of all proceeds to those organizations for as long as the archive is in existence.
I hope many of you will read this column for the next six months as I bring you more caregiver stories, all of them far worthier than mine. I also hope you’ll check out the project Patreon and follow it on Twitter. And if you have a story to tell that you think should be included in my column, please DM me at @wearesubmerged or tweet the #wearesubmerged hashtag. I want to hear from you.
Yesterday, when I laid all of this out for a friend over the phone, she asked me point blank why I felt I needed to be the one to do this. You’re a single mom, she said. You don’t have any money. You’re taking a huge risk. It might not work out.
Of all the things to think of at that moment, what came to me first was my dog, Lucy. I thought about that day, about my fear that she was dying. I thought about how, after 24 hours, her eyes stopped darting and she got up off her bed and could walk again. I thought about how that 15-year-old dog took me into the woods on a walk yesterday and leaped over a log like she was a puppy again.
I also thought about how easily it could have been different, of how it could have ended with me holding her head in my hands while she slipped away.
And even though she is better, my dog is still dying.
We are not animals, but we were, once. I do believe we will be again someday. And oh, how we posture in the meantime. We bare our teeth and our claws to people. We try so hard to be so strong, to be resilient, to keep ourselves safe, but this year has reminded us of the truth: our bellies are soft, and we are fragile, fragile.
This is what I told my friend, and this is what I’ll tell you, reader: there are no guarantees of a happy ending. There are no guarantees of any kind of future at all. What I know for certain is that no one is coming to save us. So we have to save ourselves.
Photography by: Hannah Voggenhuber