Last fall, after my partner and I broke up, I had a very hard time getting out of bed.
This is a euphemism. I know it, and so do you.
When I say, “I had a hard time getting out of bed,” I don’t mean it was difficult for me to get up. I mean I was profoundly depressed, profoundly alone, and profoundly grieving. I mean if I hadn’t had children to tend to, I wouldn’t have gotten out of bed at all.
But I do have children.
Getting up was a requirement, not a choice. So, on the days my kids were with me, I got out of bed, and went through the motions. On the days I didn’t, I barely moved. Some days, I let the light of the sun rise and fall across my face without lifting it from the pillow.
I wasn’t suicidal. I never have been and I’m not sure why. Chance, or maybe the way chemicals happen to flood my brain. All I knew at the time was that it was far more than the breakup I was grieving—it was the pandemic, and being poor, and being underemployed, and having no health insurance, and being suddenly alone during the worst year of my life—all of which were overwhelming, and all of which were an unusual confluence of terrible things. I tried to focus on the future, but simply could not. No future seemed possible. How could I plan for anything, how could I envision where I would be in one month or one year, with no money, no job, and no real stability? The only thing getting me through—the only thing that seemed remotely real or feasible—was focusing on a single day at time. It allowed me to remember that I had been through the utterly terrible before, and I had been through it alone, and I had gotten to the other side just like this—one day, one hour, one minute at a time. And because of that knowledge, I thought maybe if I was patient for a while and accepted the lack of progress as a temporary, necessary stasis, it was possible I would see a future, that glimmer of good, again. So, for a few months, I sat in my bed, and wrapped the bedclothes around me like a chrysalis, and applied for jobs, and wrote, grieving and alone, and waited for my life to transform.
And now, it seems the transformation has begun: not just for me, but for all of us, slowly, slowly. There is a new administration; there is more of the vaccine; there is, it seems, a small measure of hope, and even more importantly, a different kind of chance: to tear down all the systems that aren’t working and build new ones in their place. But a chance is the most ephemeral kind of transformation, and it’s just not enough for many of us. We have to do something.
For the past two months, I’ve written about how that governmental incompetence has impacted caregiver lives. We all know how devastating the pandemic has been on caregivers and how so many people, primarily women, have given up their careers and their identities to care for children and disabled folks and the elderly because the government has refused to help. I’ve also written extensively about how so many caregiver stories that end up in U.S. archives focus on the lives of cis, white, middle class, able-bodied women and how I want this column, and the archive I’m building and promoting in this column, to focus on the stories of Indigenous, Black, and other caregivers of color; disabled caregivers; undocumented caregivers; queer caregivers; and working class and low-income caregivers that are so often left out.
As I mentioned last month, as I’ve begun to research and gather these stories, I’ve learned that many of them fall into at least one of four categories of emotional response: rage, lust (or lack thereof), grief, or isolation and loneliness. This month, the caregivers I interviewed told me primarily about their experiences with loneliness and grief, which merge with my own in unexpected ways.
Last year, 26-year-old Ashley Lee’s family received the news that her 84-year-old grandfather, Jesse, had fallen down and had to be hospitalized. While he was in the hospital—already a stressful experience during a pandemic—the family received more difficult news: Jesse had spinal stenosis and prostate cancer. The diagnosis, said Ashley, who lives in Illinois, added a “layer of urgency” as well as a complicated experience with grief, and she and her family decided it would be best for Jesse to spend his final days at home.
From a practical perspective, what that meant was that Ashley and other members of her family had to step up and take on caregiver shifts.
“It was a huge wake-up call personally,” she said. “It helped me understand the multi-pronged nature of caregiving and the cost of it.”
One of the things that nagged at Ashley about her grandfather’s illness was her worry that it could have been prevented.
Like a number of illnesses, noted Ashley, “prostate cancer disproportionately affects black men.” Because Jesse was born in 1935, “the generational attitudes about black people and healthcare were something I had to be aware of,” and Ashley still couldn’t help but wonder “was there neglect, intentional or not” from his doctors.
“My grandpa might have downplayed it,” she said. “How long was grandpa living with this that we didn’t know about it?”
In the middle of her grief over her grandfather’s impending death, Ashley said she tried to spend some time talking with him and gathering stories about his life.
“There was something really intimate and scary in a way about this ticking clock,” she said. Part of the process for Ashley was being aware of the necessity of asking the right questions, not just about his life but about hers as well: “How can I be mindful? How can I appreciate this time?” she said.
While she was caring for him, Ashley learned her grandfather, who was raised in rural Louisiana and was a social worker by trade, had wanted to be a chemist, but that career path had been impossible for him. Still, it made Ashley wonder about what path his life might have taken. “I just wonder if resources were different, if our larger family system had a different level of awareness, what would grandpa the chemist would have looked like?” she said.
Her grandfather, however, was proud of all he’d overcome and had a different perspective. “He said he’s on borrowed time,” said Ashley. “He was so grateful for that. He was satisfied. To me, there was something admirable about that and devastating.”
Jesse passed away in December 2020. Ashley said the experience of caring for him at the end of his life taught her a lot about grief and caregiving and what both mean for her future.
Grief combined with the anticipation of Jesse’s death was “like a child’s toy that you can twist and wind,” she said. “You’re gearing up for the toy to play, to sing its song, to do its movement.” Now that he has passed, the grief is “fluctuating, it’s unpredictable at times,” she said. “That’s been moving as well—just thinking about my relationship with grief.”
Ashley said while the experience of grief is solitary, she’s been able to process both alone and with family as well as online support groups. “There are great startups and services in the online community,” she said. They’ve also helped her think back on the caregiving experience, which was sometimes a fraught process, especially trying to make wise decisions while also respecting the autonomy of both of her grandparents.
What it also taught her, she said, is how critical it is to care for oneself as well as for others. “Caregiving is a collective process,” she said. “It’s a link between the co-caregivers, the person in need, and nourishing the self and nourishing each other. And I would argue that it’s a wellness/mental health endeavor.”
It also taught her how important it is to think about our own future caregiving needs. “It brought up a range of questions for me,” she said “How do I want to prepare? When do I want to prepare? Who do I want to be around? Who will take care of me?”
And, said Ashley, part of that reckoning is learning “how to be okay with not having those answers right now.”
Those unknown answers about the future are also something that keeps 24-year-old Macey Spensley up at night. Both she and her 27-year-old boyfriend live together in Iowa, and they are both Type 1 diabetics. What that means is they both have a caregiver available, but that caregiver also needs care.
“We care for each other,” she said. “We both know how it feels to function as a vital human organ every second of our lives and how frustrating it is when our bodies do not bend to our will.”
Macey says it’s taken her a while to get to this point, and while this may differ for others with a similar diagnosis, she now considers herself disabled as a result of her diabetes. “Diabetes is a chronic illness, and it means a part of my body does not function properly and my entire life is altered because of it,” she said. “When I was younger, I really distanced myself from that (disability) label and that was a feeling that was completely rooted in ableism. It always felt like calling myself disabled was calling myself lesser, and every day I work to unlearn that thought process and see myself as both disabled and whole.”
While both Macey and her boyfriend have the same disease, she said their experiences with it are often completely different from one another, which presents unique caregiving challenges. “Having the same disease that affects us each differently is incredibly difficult,” she said. “My partner can tell me his blood sugar reading, and I can think of a million ways that I would solve it for myself, but sometimes none of those solutions will work for him.”
Sometimes the result of that difference is downright terrifying, said Macey. During one months-long stretch in the middle of the pandemic, Macey said her boyfriend was experiencing severe low blood sugars at night. “I’d wake up to him saying “help,” drenched in sweat and unable to articulate a full sentence,” she said. “One time he just put all 270 lbs of himself on top of me until I would realize something was wrong, because he couldn’t speak.”
Then one night, said Macey, the worst happened. “I woke to him violently shaking and realized he was having a seizure,” she said. “His blood sugar was 24. I grabbed a glucagon, which is like an epi-pen but meant to raise your blood sugar quickly and started drawing it up the same way I taught my friends to do in high school if something happened to me. I injected him in the thigh, the same way I imagine my mom has feared she might have to do to me since I was 5. I held him as he slowly stopped shaking, reminded him to breathe as we waited for paramedics to arrive.”
Since then, Macey’s boyfriend has gotten a continuous glucose monitor, which will alarm way before he ever gets that dangerously low again. But that monitor, said Macey, “hasn’t stopped me from waking up in a panic every time he moves a muscle in bed, convinced for a second the worst is happening.”
Macey and her boyfriend know they’re lucky in some ways because they have supportive parents nearby and a community of people from a diabetes camp they both attended as kids who understand the challenges they face. But it doesn’t assuage the loneliness they grapple with. Dealing with the legacy of the trauma of her boyfriend’s low blood sugars has been a lonely process for both of them, she said, but additionally “there’s a weird, isolating feeling in knowing that you are one of the groups people are referring to when they say they are ‘high risk’ for COVID,” she said. “I know what illness does to my body, but I can’t explain that to anyone else. It’s easy to read between the lines when people refuse to stay home because it’s ‘only’ people like you or the person you love who would die.”
Grief is also part of the equation. “There’s a deep sadness in seeing someone physically suffer, understanding that pain since you experience the same disease, and knowing you can’t fix it,” said Macey.
But what’s most persistent for Macey and her boyfriend is the constant fear. In addition to individual worries about medical costs or possible job or healthcare losses, Macey’s fears are doubled. “I have lived with knowing what diabetes could do to my body for two decades: ruined eyesight, lost limbs, kidney failure, comas, etc.,” she said. “Now I live with knowing that not only could these things happen to me, they could also happen to the person I love…If I had been visiting my parents that night he had a seizure, he easily could be dead right now. I think about that a lot.”
The loneliness, the grief, the fear that Lee and Spensley and I talk about in this column—it’s persisting, and it’s sometimes difficult to parse one emotion from another. There’s good reason for that: we are still in the midst of a crisis, and because of the large-scale governmental incompetence and inaction in dealing with that crisis when it was fresh, the failures of the pandemic are now deeply embedded in our culture. It will be with us for quite a while, and for a while, it is going to be difficult for us to make sense of all of it.
This is why these stories and archival projects like this one are so important: because there are millions more Ashleys and Maceys and mes across the country whose stories haven’t been told and deserve to be. This is why I say again that the transformation has started, but slowly, and we can’t be passive participants. We’re the ones who have to push it forward.
The interview with Ashley Lee took place via Zoom on March 26, 2021. The interviews with Macey Spensley took place via email on March 25 and 26, 2021. All identities of caregivers who choose to remain anonymous for the purposes of this column or the archive are recorded but will be kept confidential in archive records.
For more information on the larger archive project, please visit the Patreon for Submerged: An Archive of Caregivers Underwater. If you have a story to tell that you think should be included in this column, please fill out this form, send a DM to @wearesubmerged, or tweet the #wearesubmerged hashtag.
Photography by: Virgil Cayasa