Persephone would rather stay up here, thanks
Patience has never been my strong suit, and I’m not very good at being sick. One year into my bedbound era, I’m a hyperactive child gazing out the window, my imagination buzzing so loudly that it drowns out the algebra teacher completely. I am a clunky 1950s robot caught in a paradox between “must do the thing” and “can’t or I’ll crash myself,” keeling over in a tangle of sparking wires and metallic limbs. Chronic illness is a straitjacket. Chronic illness is a cement block that cartoonish movie mobsters have chained to my feet. As my condition slowly improves, my newfound energy seems to be channeling itself into irritability, impatience, and longing.
I have been working with the Empress tarot card since last fall. She bubbled up out of a mathematical formula as my tarot card of the year—a kind of guiding light or archetypal theme that’s supposed to help orient me through 2024. (For more information on this card of the year thing, see end note.) Honestly, this feels as bitter as the irony of being sick in the summertime. As if I am being asked by a tactless universe to thrive at a time when I cannot. In Pamela Coleman Smith’s iconic illustration, The Empress sits in the midst of a lush landscape. It is high summer there, much as it is here, now, on the Eastern seaboard of the United States, where I live. Her seat is luxurious, draped and cushioned, her dress loose and voluminous, her crown set with 12 stars, presumably representing the months of the year. The landscape around her seems to be bursting with the health and growth of the summer season, trees and grasses racing each other toward a bright yellow sky. You can practically hear the buzz of insects, the chirp of bickering birds.
The Empress represents the earth. The archetypal mother. Associated with the number three, she is creativity and Creation itself, life force, healing, the feminine principle who sits opposite the Emperor. She is Demeter and Persephone. The cycles of the seasons. I think of growing things. Verdant, tangled gardens. Colorful fruit and strange, carnivorous flowers. Ecosystems that sprawl and self-regulate, vibrating with mysterious, decentralized intelligence; life begeting life, decaying, lying fallow, gestating, and begeting life again. But the story of the Empress is just as much about life breaking down into mulch that nurtures new seeds as it is about what sprouts. So much of the Empress’ story takes place underground, in the quiet and fertile dark.
Persephone spends half her time in the underworld, after all.
And speaking of the underworld
There is a natural boom-and-bust cycle to ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome), a complex disorder of the nervous and immune systems and my primary diagnosis, that lends itself to guilt and self-recrimination. I push my body to the breaking point, and then break, and then melt down and wait in pieces, like the second Terminator in the James Cameron film, for my little bits to converge and reform into a humanoid shape that can go back to chasing down John Connor. (This is such a dated reference, but that film made an impression. In the 1990s, we kids had never seen anything like that clip.) It is not always easy to predict what will cause a “crash,” and when I am finally over a crash, it is hard to resist the natural tendency to want to throw myself back into activity—which is likely to cause another crash. Living with this illness is like walking always on thin ice, and it is so very difficult to listen for the first signs of cracks.
I try not to blame myself too much for these difficulties. Severe ME/CFS is an unforgiving illness, and a trip to the bathroom can break me if I’m already vulnerable. And in some ways, it’s even harder to manage my energy as I gain a little bit more capacity, because the goalposts have moved, and I’m having to learn my body’s boundaries all over again.
But I was also in the habit of driving my body past its true capacity before I got sick. Like many of us, I come from a lineage of refugees, and my body holds a felt sense of scarcity and vulnerability. This makes me very susceptible to capitalism’s promises and threats about the payoffs of success and the perils of slacking off. The malignant sorcery of white supremacist capitalism imagines everything—and everyone—as an exploitable resource to be stripmined for materials or labor. It seems normal to drive our bodies into the ground. So much of learning to manage my illness has been about unlearning these habits.
Pacing as devotional practice
How to replace the boom-and-bust cycle of ME/CFS with something more sustainable, to bring the ecosystem of my body into greater harmony, is an ongoing area of inquiry for me. This is a practice called pacing, which is the single most effective tool for managing long covid and ME/CFS, or any illness with an element of crashing 24-72 hours after activity, also known as post-exertional malaise (PEM).
Pacing requires attention. I’m learning my body’s rhythms, habits, and limits. I use biometric information and my own felt-sense to anticipate a crash before it becomes inevitable. I begin to notice, in real time, the subtle, edgy rush of a depleted body running off stress chemicals. I am learning my mental and emotional ecosystem. I notice that sometimes pushing past my limits can feel subtly virtuous, and that leaving a task half-finished can sometimes feel subtly shameful.
Pacing requires discipline. Not the discipline of pushing the body through more pushups so the drill sergeant doesn’t think you’re soft. Rather, the discipline of the ego surrendering to subtle signals from the body that we are done with pushups for today, Sarge. The word discipline comes from the same Latinate root as disciple, and can invoke the same notion of focused attention and devoted practice. I use technologies like timers and step counters to help me stay mindful of my limits as I work or move, but ultimately, it is up to me to find the loving motivation to prioritize rest above doing something I may desperately want to do. Persephone can’t stay above ground forever.
Pacing is frustration. It burns me. It asks my passionate, capricious, desiring and aversive ego to surrender to the reality of what my body can and can’t support. To my hyperactive inner child, who wants to run til her lungs burn and scream in triumph from the top of the monkey bars, surrender is as intolerable as gripping a hot coal. But a wiser, older part of me knows that pacing is my reality; not only is it is my best shot at living sustainably, but by staying within my limits, I am slowly increasing the scope of what I can do. The struggle is ongoing.
Nature is fractal, the world is a scrying tool
In The Future is Disabled, Leah Lakshmi Piepzna-Samarasinha writes that disabled QTBIPOC (queer and trans black and indigenous people of color) have already developed, through the challenges of incarnation, the creative solutions and survival skills that humanity will need if we’re to survive what’s coming. I am a white, cisgender woman, but I wonder if I am seeing some of Piepzna-Samarasinha’s disabled futurism play out in my own life. As my body, my own little slice of the planet, falters, the skills that are allowing me to come back into right relationship with it are also skills that make my world kinder and more sustainable.
Don’t get me wrong, I’m not trying to argue that there’s a higher purpose to my illness or intention behind it. That’s not how this stuff works. Suffering is senseless. But life on earth is fractal—what plays out on one level of the system plays out at other levels, at scale. And systems intelligence is nonlocalized, emergent—logic operating without origin. And meaning is something we get to make, using life itself as a portal into our own intuition, reading significance into our experience like tea leaves or tarot cards. And the longer I’m sick, the more the entire world starts to seem like a scrying instrument. I think there is great value in looking at our lives this way.
I am learning to listen to my body and mind with more intimacy and nuance. I am excavating deep places where I have internalized extractive capitalism, and where those reflexes are causing harm. I am learning how I affect my environment, and how it affects me. I am learning to tune into my own inner knowing, to observe how my body and environment actually respond to my behavior, and to course-correct in order to maintain harmony. I am learning deep compassion for other people and animals who are sick or suffering. I am learning that I am inextricably connected to other people. And that their decisions—to mask when ill, for example—affect me directly. I am learning that what is happening to the planet is connected to what is happening to my body. And I am learning to accept reality, to surrender to the physical limits of what my body and environment can and cannot do.
In systems theory, learning refers to deep, structural changes to the organization of a body. Illness teaches in that sense. I would never choose a curriculum this punishing for myself or anyone else. And, as I observed in a previous writing, there is no guarantee that anyone will survive an initiation. But there’s no denying that this illness is a curriculum in sustainability, surrender, and radical acceptance of what is. For many folks, ME/CFS is an illness of remission and recurrence. At the moment, with the support of pacing, pharmaceuticals, and the privilege of rest, my body seems to be finding some kind of tenuous balance. And I’m trying to surrender to the processes I’m in. I’m trying, friends. I’m trying.
Tarot card of the Year
This is an idea developed by Mary K. Greer that uses numerology and tarot to suggest a yearly archetypal theme. For more info, check out her book Tarot for Yourself. Or, if you’re not into math, pick a card on your birthday that feels intuitively resonant and work with it over time.
Further Reading & Resources
On the subversive power of rest, deep ecology and the wild magic of natural systems, and spirituality and the tarot.
Emergent Strategy by adrienne maree brown.
Mutual Causality in General Systems Theory: The Dharma of Natural Systems by Joanna Macy
Novelist and philosopher of chronic illness and deep ecology Sophie Strand, here on Substack.
Writing, podcasts, and workshops from artist, author, and tarot scholar
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Dear reader…
Anyone else struggling with summertime, summertime sadness? Or thinking about backhanded, ambivalent “lessons” of tough life experiences? If you’re working with a tarot archetype this year, how is it resonating with you, seven months into 2024? I’d love to hear from you in the comments!
Thank you for this beautiful post! I definitely relate.
One Tarot card for a whole year? I am definitely not patient enough for that.