In caregiver support group, someone says “I would like to sit longer with joy,” and my body responds with an instantaneous shower of chills.
There is an urgency to life right now. It feels like nothing can wait.
At dinner immediately after, I catch myself leaping out of my seat at soon as the last forkful of food has entered my mouth. I stop, sit back down, close my eyes, take a deep breath. More chills. I feel my gut unclench.
I did it again this morning at breakfast, jumping up like there’s a fire in the kitchen and I have to rush to put it out. But there’s no visible fire, just the slow, underground burn of his decline. Miles and miles of it stretching under everything.
I’m taking advantage of a chance to work with a new acquaintance who’s training to be a coach. I’ve never had a coach before! The idea of having someone—ANYONE—to look out for me is really appealing right now!!
But also: I’m suspicious of why I’m doing this.
Some things I know:
The way I was working pre-Pandemic brought me a degree of financial stability, novelty, recognition, and stimulation that was deeply pleasing to me
The way I was working pre-Pandemic spread me thin, encouraged me to keep playing the hits, caught me in a web of social media addiction that didn’t make me happy, took me away from developing deeper and more intimate relationships with the people closest to me
I have a big fat A+ Student complex and a Perfectionist streak a mile wide
I have at least five personal projects that all feel like they’re languishing at 89% completion and if I could just get them finished everything would change
I have a knack for translating complex internal experiences into stories that speak to people
I feel pressure to translate every complex internal experience I have into stories that speak to people
Making work that connects me with other people nourishes my soul
I used to believe that by pulling off impossible deadlines I was somehow training to cheat death
My life as a caregiver (and co-parent-habitator) is so different from any other life I’ve lived before
I live in a society that systematically devalues the kind of labor I’m spending the majority of my time doing right now
I live in a society that systematically valorizes the kind of career I was building before I transitioned to this season
Doing more will not ultimately protect me from the grief of slowly and inevitably losing my dad
I’m sniffing around the idea that I might be using a coach as a taskmaster who will “get me back on track” and help me recapture the cadence of my pre-caregiving life. Do I really want that? Or is it just my best guess at what will give me the good brain drugs, and I’m so hungry for something that feels better than the inevitable decline I live with every day that I’m scrabbling for it with everything I’ve got?
Cross-posting from Patreon because I want to keep this stuff on my site, too. CW: this post talks about an ER visit, elder care, and grief.
Two days ago I was trying to explain to a partner how intense being a caregier is despite there not being very much “action”. My dad is stable. He doesn’t have a clear timeline. I just know that he is old, and often confused, and needs my help.
Yesterday that looked like agreeing to take him to The Farmer & The Cook, the local venue where the collage pieces we made together have been hanging for the last six weeks. That’s where I took this photo. He misses being out and about every day, greeting his public, watching people going about their business. It’s one of the things I struggle with most: I want him to be safe, and I also want him to be happy.
It was set to be a scorcher, so I made extra sure he’d had breakfast and his smoothie before we left the house, tried to get there early in the day, parked him in the shade.
But maybe I jinxed it, talking about there being no action, because ten minutes after I took this photograph he had an episode—slumped over, drooling, unresponsive. His dentures slid out of his mouth one after the other in a slow-motion horror show I’ll never forget. I kept hoping he’d snap out of it but he didn’t. Someone got me ice. I found myself wondering if his insurance would cover an ambulance. I didn’t know what to do. I called my mum to come join me and asked her to bring the walker, because we’d gotten him into the car with the walker on other occasions when he got wombly, but in this instance it was totally laughable because the man was clearly unconscious.
He was gone.
She arrived, took one look at the situation, and called 911. I just kept holding his shoulders, patting him down with ice, trying to bring him round. It is awful to feel so useless in the face of a crisis. I knew he needed to drink water but he couldn’t drink. How was I supposed to get him to drink?
He looked so small when they put him in the ambulance.
Driving the half hour to the hospital on the tail of the paramedics, there was no way to know what we were in for. Would he be paralyzed? Would he be dead? Would he remember? Would he be fine?
There’s a sick sense of relief bound up in an episode like this because we understand acute crisis. I can talk about “hospital” and “collapse” and “emergency” and people will understand—even if they’re just drawing from pop culture, they’ll understand.
But every day as a caregiver carries that load of uncertainty. It’s not as loud, so we can function, but it builds and builds. It ripples. It reminds me that it’s not just my dad whose life could change or end at any moment—it’s me. It’s everyone.
Even when nothing is happening, so much is happening.
I spent 9 hours on the sidewalk outside the hospital, waiting. It was 90º out and miserable. No waiting room privileges because of COVID. Mum had to be the one person allowed in the ED with him because she knows his doctors and medical history better than I do.
One impossibly kind nurse got me back to see him for three minutes, which wasn’t enough, but also was. I heard his voice. I saw his eyes open and smiling. I got to stroke his hair.
They kept telling us he was going to move to the hospital proper, where he’d be allowed two visitors, but when they finally did move him, four hours after that initial, tantalizing announcement, visiting hours were over. I had to stay outside.
I’m paying a lot of attention to labyrinths this year. I’d already been outside the hospital for two hours when I went to move the car and realized I’d been sitting twenty feet away from this:
I’ve stopped being surprised by this sort of stuff. I just start laughing and saying “Okay, OKAY I get it” to no one in particular.
I walked it when the sun finally went down and the temperature dropped enough to move in.
In ten minutes I’m going to drive back to Ventura to pick him up and bring him home, apparently no worse for wear. No stroke, no heart attack, just…age. Heat. Dehydration. Blood pressure. Who knows. And this makes me feel relieved and grateful and exhausted and also so angry. Because even if he’s fine, we’re left carrying the weight of how it could’ve gone. These pendulum swings of possibility.
I’m left remembering his teeth in his hat on the floor of the car, riding down the highway with us on our way to the unknown.
Hourly Comic Day is an annual tradition in the comics community where folks set out to draw a panel (or two, or three) for every hour they’re awake on February 1st.
It took me a couple weeks to get through finishing my pages from this year because it was a) hard to fit in inking and watercoloring and posting around caregiving, but also b) just exhausting to deal with emotionally. Still: I’m so glad I did it. In 2021 I was right on the cusp of uprooting my life in Portland to move down to Ojai and look after my dad. Now I get to have a record of what the rhythm of these days has been like, and I’m sure I’m going to appreciate it more and more as time goes on.
There’s more to say but I’ve been formatting and posting these pages in various ways all day as I spread them across my internet haunts and I am wiped, so I’ll just get on with sharing them. If you’re finding this through an RSS reader, be warned that the gallery won’t work! Ya gotta click through to read it easily. (Also! An accessible edition with panel by panel alt text is available here thanks to a collaboration with various folks from the Friends of the Space Gnome Discord server. Blessed be their name.)
I’m starting to think I have a knack for digital bibliomancy—an uncanny ability, given the vastness and improbability of the internet, to stumble upon just the right input at just the right time.
To set the scene: I finished watercoloring my hourly comics tonight, and have been thinking a great deal about repetition and sameness and grief and depicting the people and places you love. I’ve also been picking apart why, having made this intimate portrait of what it looks like to care for my aging father day in and day out, I feel more comfortable with the idea of sharing the comic online with an audience of thousands than I do showing it to my own mother.
Tonight, the knack looked like going on Twitter to follow someone I’d just met through a private Slack, reading the last few tweets in her timeline, seeing a link she’d posted in early 2021 to a now-archived blog, clicking through and laughing at the blog and then feeling like the curator‘s name was familiar, realizing I’d read a book she’d cowritten some years ago, perusing a list of essays on her website, and finally clicking on the first one because it was about “death, mourning, the artist Pierre Bonnard, and how to make a vital life out of repetitions and sameness, rather than newness and adventure.”
Here she comes:
There is a deep, dark, endless feeling to representing one’s insides. What appears in your writing changes the objects and people around you; they take on the qualities of how you portrayed them. A friend drawn ugly becomes ugly. A life drawn sweet becomes more sweet. To draw your life is to attempt to transform it with your magic. Your life invariably comes to resemble the depiction layered on top of it, because you now look at it through the lens of how you depicted it. This is why some artists run away from their lives; because who among us can live forever in our own dream?
I threw that bold in there, because that was the point I sat up straight and thought “OH SHIT.”
Of Bonnard’s working method the curator Dita Amory wrote, “Only when he felt a deep familiarity with his subject—be it a human model or a modest household jug—did he feel ready to paint it…. Asked if he might consider adding a specific object to his carefully circumscribed still-life repertoire, he demurred, saying, ‘I haven’t lived with that long enough to paint it.’”
I have repeated that phrase in my mind so often since encountering it, twisting it this way and that: I haven’t lived with it long enough to paint it. I haven’t lived with it long enough to write about it. I haven’t lived with it long enough to love it. What does it mean to distrust the novelty of experience? To say instead that what one needs in order to create are not new things—not new grand adventures, not new wives or husbands or cities—but the same thing over and over again until a Platonic form of the thing builds up in the mind and becomes the model for what is written about, or painted?
There were many moments in the course of penciling and inking my hourlies that I found myself drawing things without reference and feeling surprised—as if I haven’t interacted with them daily my entire life. As if I haven’t seen the exact pattern of my father’s behaviors day in and day out for an entire year.
I keep thinking about fixed action patterns in animals.
I keep thinking about what is being cemented in me during this season.
We all know that there is a quality of duration that must be harnessed, which seems to be not only a way of working against the fickle intrusion of inspiration but the only way of living after a certain age: understanding the humdrum repetitions of life to be a kind of balance; refusing to chase the tsunami of inspiration that comes with each new falling in love, each new city; having only the same walls around us, and the same plates, and only one wife, who will always dislike our friends, and spend day after day in the bath.
(I even have a wife who loves the bath! It’s not relevant to the main thrust of this, but I do love my wife and my wife loves the bath.)
There it is: the delight of finding something that speaks so precisely to the moment I’m in—down to the second. And then the wondering about whether reading it on any other day would’ve left me cold.
(The first time I read Ali Smith I bounced off her work entirely. And now I’m reading everything of hers I can get my hands on.)
Walking in the forest with my dog a few weeks after my father died, I noticed the green of the fir trees; the colors were so muted and beautiful. And up above was a flat gray sky, easy to look at, the sun dimmed at midday by a thick layer of clouds. All I could see were the colors in nature and their perfect harmony. I could have stood there staring for much longer if my dog hadn’t been impatient, and if my shoes hadn’t been wet. Everything was dripping, the previous day’s snow already melting. And because I felt in that moment as if I had never really looked at colors before, I stood wondering beneath the shadowless sky whether, when my father died, the spirit that had enlivened him passed into me, for I had held him as he died; as perhaps when his father, a painter, died, his spirit went into my father, so that now I had the spirit of my father and the spirit of my grandfather both inside me. And I wondered whether this influence—the spirit of my painter grandfather inside me—was why I was suddenly noticing colors.
I keep remembering Dad’s wedding reception when Grandpa lost the word lily. My hand out pointing to one of the centrepieces, white flowers spilling over onto the table like wine.
I had the garden in my head when I asked him to name them. The garden out behind the bungalow he built that he always kept so neat. I saw him on his knees in blue overalls, pruning. I saw him pretending not to mind as a football went crashing through the fuchsias. Then I saw his eyes, panicked and dark as the hole where a word should be, some kind of —
and my dad said lily and this is how we manage. Dad keeps the word lily. I keep the sunlight and the grey squirrels cascading across the lawn on Sunday mornings. And together we remember everything.
—Joshua Judson (2020), via today’s installment of Pome.
My goal now is to forget it all so that I’m clean for death. Just the vaguest memory of love, of participation in the great unity.
What does it mean to be a steward of something or someone in decline?
In caregiving or hospice work (and ecological thinking in the era of climate collapse), this is clearly the game, but I catch myself wondering how it translates to making a comic or writing an essay or any other generative act. How is this season of my life a form of cross-training?
Often I think of creation as an additive process—raising a child, building a city, weaving a carrier bag. But what if, rather than moving closer to the realization of a vision, the putting-down-on-paper-ness of it all degrades the original, unthinkable idea? (However I pronounced “Hermione” in my head as an eight-year-old, for example, vanished the moment I listened to Harry Potter and the Philosopher’s Stone on audiobook.)
I say “degrades” and feel the jolt of negative connotation, but I don’t mean for this to be negative. There are many ways to think about caring for someone with less time left on this earth than I have. Some of them are negative, depressing, dispiriting. Some days I succumb to that helplessness. But there’s a richness to it, too, even if it doesn’t fit the cultural model we’ve inherited for worthwhile heroics. Again, Le Guin: “[…] the Hero does not look well in this bag.” I try to apply the grandiose posturing of meeting an impossible deadline to the work of caregiving and instead I come up against the fact of death again and again and again.
I think there’s still a part of me clinging to the idea that if I could only become [blugh] enough, I could bring my ideas into the world in a visual form that fully encapsulates what’s present in my mind. And yet: 100% of the time, the page I draw does not, cannot, match the one I envisioned when I sat down at the drawing board. And yet and YET: 100% of the time the physical manifestation of that vision eclipses what I’d imagined. Maybe not in the moment, because I’m stubborn and I’ll usually spend a day or two scowling at whatever’s ended up on the page, muttering about how I’m not mad I’m just disappointed, but once I’ve gone away and come back and seen the page contextualized in the greater stream of the narrative, it’s like someone’s shaken the Etch-a-Sketch. Blank slate. The vaguest memory of love.
On a call with some of the folks from the Wayward community the other night, someone shared a conversation they’d had with their therapist about emerging into 2021. PTSD, the therapist pointed out, doesn’t generally rear its head while soldiers are on the battlefield. It comes later, when things are supposedly “safe” or “better” and everyone around us is celebrating or relaxing and we’re only just beginning to experience the full impact of what we’ve been through.
It hit me like a pile of bricks.
I feel so far away from my creative self right now. The only thing I keep finding comfort in is learning that a lot of other friends are in the same boat—that maybe a majority of us are actually grieving the loss of whatever creative spaciousness or clarity we’d managed to eke out in the solitude of Quarantine. Or maybe we’re all just braced for the next wave of closures and infections and losses, or finally feeling the full weight of the closures and infections and losses that have already come and gone.
My first family COVID deaths happened in quick succession within the last two weeks—far past the peak of the Pandemic. What does that mean? How am I supposed to feel? They lived in another country, separated by oceans and continents and the 17 years since I saw them last in person. But they were family—a community I struggle to feel connected to at the best of times, even though I yearn for it desperately. I’m vaccinated. My parents are vaccinated. Nothing quite like thinking you’re “safe” and then realizing grief can still snake its way into your circles, no matter the care you take.
I’m thinking, too, about the way I keep brushing off this mental and creative slump in conversation, waving my hands and explaining to friends that “it’s just a phase” and “things will feel better as soon as I get stuck into my next project.”
“This always happens,” I say. “I always pull through.”
But something I didn’t account for is living in house alongside my dad, one of my primary sources of creative inspiration and cheerleading growing up, who genuinely has lost contact his creative self. Dementia is not the seasonal cycle that I usually comfort myself with when I think of the ebb and flow of creative embodiment. It’s a far darker and more linear decline. It makes the threat of permanent loss in these low tide seasons feel more real.
It’s not to say that I’m over here worrying about imminently losing all my marbles. More that…I don’t know. Maybe that I haven’t been making enough space for the enormity of everything. When I make light of this season—either because I’m afraid of it, or embarrassed that it’s happening to me, or something else—I rob myself of the chance to feel my way through into whatever comes next.
Piper Haywood wrote one of those very good posts last week—a cross-section of personal interests that manages to be both minutely specific and widely resonant. It was full of thoughts about female furniture designers I’d never heard of and Joan Didion essays on notebooks and ideas about the distinction between personal blogs and…whatever else it is that we do to try and share ourselves on the internet. I loved reading it. It also reminded me of something I’ve been meaning to write about here.
It seems silly to say, but I wasn’t prepared for just how often I’d come face to face with the things that made me now that I’m living at home.
My dad never taught me about Commonplace Books or Zibaldones, but he kept one religiously.1 He was always hunting for quotes and anecdotes to fold into his teaching or add to his column in the local quarterly magazine. He also inscribed them on the collaged, abstract bookmarks he made for everyone he met. A great deal of his creative expression boiled down to this magpie tendency—a delight in gathering raw materials and mashing them together into something new.
Piper shared a quote from Didion where she talks about the notebook as “bits of the mind’s string too short to use, an indiscriminate and erratic assemblage with meaning only for its maker.” This certainly seems to have been the way my dad approached his pocket-sized collections. His penmanship makes every page feel like a work of art, but I don’t think they were primarily made to be shared—at least not in this form.
And yet below every quotation about children or parenting there’s a note:
There’s no way he could’ve known I’d open to this page, having just read Ondaajte’s poetry for the first time last November. Having listened to Aimee Mann in college. Line after line, I see so many names and themes that have showed up in my own obsessive collecting.
When Didion lists the kinds of people who keep notebooks, she closes with “children afflicted apparently at birth with some presentiment of loss.” It makes me shudder in recognition.
Growing up, I was all too aware that my parents were the age of my friends’ grandparents. My extended family weren’t down the road, but scattered throughout England and South Africa and Canada. I didn’t have siblings. I’ve been bracing for as long as I can remember to try and make sure I’ll be able to survive on my own. (No wonder I placed such a high value on independence in my career.)
I think I felt that keeping my parents had to be an act of willpower—one I could fail at and therefore had to approach with constant vigilance. But when I see these notebooks, something shifts in me. These words are confirmation of something I’m trying to learn in my bones: I couldn’t lose these people even if I tried. Their patterns made my patterns, at least in part, and as long as I pursue those patterns, I carry them forward in the world.
My inheritance is ubiquitous.
1. I don’t know how to do tenses with him. He doesn’t do these things anymore, but to speak about any of it in the past tense makes it sound like he’s dead. He’s not dead, but vast parts of him are no longer present. How do I talk about that? I don’t know. ↩