Desire has entered the chronic illness group chat
A princess in an urban tower, a curious tale about salad greens, and other Uses of the Erotic: Musings on the universal and ambivalent state of wanting.
It started off as a joke in the chronic illness group chat. K.’s brother had casually referred to her as a shut-in, and she was not pleased.
“Does that language bother anyone else?” she said.
“Would you prefer housebound?”
“Ew. No.”
“All of the terminology is gross and ableist.”
“I identify as a princess in a tower,” I offered.
In fact, my situation has striking parallels to Rapunzel’s. I live in a second-floor walkup apartment. For over a year, I haven’t been able to leave it. My front and back doors open onto steep staircases. The back stairs, which I share with my hippie landlords, are like something out of an MC Escher house, with steep steps stuck together at Elder God angles, punctuated by strangely shaped landings. Meanwhile, my front steps are built like someone took the suicide stairs from The Exorcist out of Georgetown and twisted them around a central axis just to make the ascent that much more fun.
I’m doing much better now than I have been since my surgery last July caused a surprise! chronic illness flare and left me mostly stuck in bed. But those stairs. My legs, which were once sturdy enough to sprint across the playground after my four-year-old nephew, now threaten to fold under me like a marionette’s, and are definitely not ready for those stairs. Which means I’m empathizing hard with Rapunzel.
Girls just wanna have COVID-safer intimacy
The chronic illness group chat is a hoot. There are I think eight or 10 of us, all women and femmes, straight and queer, from different walks of life, raunchy af, all at the end of our rope with being so desperately ill. We connected, indirectly, because of desire: in a Facebook group for “singles” with ME/CFS. When the mods repeatedly sided with the most aggrieved men’s rights activists in the room we staged a virtual walk-out and have been exchanging complaints, commiseries, chronic illness tips, and nudes via messenger ever since.
Being housebound, if we’re going to go with that language, does not stop us from feeling or acting on desire. H. has an electric sexual connection with a partner whom she calls “boomerang” because he keeps coming back, no matter how hard she hurls him away. A. had an ongoing a fling, until recently, with the hot phlebotomist who would come to her house to do a blood draw every week. V. and E. have long-distance partners who are also chronically ill. K. has a devoted following on OnlyFans and a few local friends-with-benefits who are willing to come to her and practice COVID-safer intimacy.
As for me…until recently, I’ve been too sick to want anything other than the cessation of sickness. But now that my condition is a little more stable, I’m getting restless. And I’m thinking about the slippery, unstable, insatiable nature of desire.
Desire is a moving target
Just a few weeks ago, all I wanted in the world was to be able to go outside. And now, I’ve gotten my wish—and I’m not satisfied. I’m restless. I want to walk. Run. Feel ease in my body. And I’m lonely. I field irritating impulses to text my most toxic exes. I’m whacking away bad ideas like I’m in a psychic batting cage.
One thing about being seriously ill is that it burns away everything extraneous. Your deepest priorities pop into focus. You stop wanting stupid shit, or really anything that isn’t absolutely essential. The petty distractions of the ego are so obviously petty distractions. Its obsessions and addictions can’t hook you.
It is strange, as I recover some energy, to watch that stuff creeping back. Frankly I’m not sure how to feel.
Give me salad greens or give me death: a reading of “Rapunzel”
So I turn to another princess in a tower for answers: the original Grimm brothers’ “Rapunzel,” one of the strangest allegories about desire that I’ve ever encountered. Maybe allegory is the wrong word. The story has a bizarre, unsettling dream logic that is blindingly unsubtle, but also resists easy analysis.
“Rapunzel” opens with desire: a childless couple who desperately want a child. But that plot thread gets dropped when the wife notices a gorgeous patch of rapunzel—a type of salad green—growing in the garden of the sorceress next door.
"Oh," she said, "if I do not get some rapunzel from the garden behind our house, I shall die."
This seems a little dramatic. Weirder still, her husband hurries to fetch the greens because he also believes it’s possible die of desire. And, weirdest of all, when he gets caught stealing the rapunzel and spills the whole story to the sorceress, she seems to agree that desire can kill.
"If things are as you say, I will allow you to take as much rapunzel as you want. But under one condition: You must give me the child that your wife will bring to the world.”
The sorceress takes the child—named Rapunzel after the salad greens—and when the child reaches 12, that dangerous age for girl children, the sorceress locks her in the iconic tower. Prince Charming hears Rapunzel singing in the forest, and “he could have no peace” until he finds her; his desire for her is as consuming and destructive as Rapunzel’s mother’s desire for salad greens.
This story is big on the toxic and destructive nature of desire. Desire makes people physically ill. It drives them to break social rules, upend relationships and living arrangements, and invite danger and physical harm. Ultimately the prince abandons his literal kingdom because he is sick with desire. Desire leads the sorceress to terrible vengeance.
Time takes a cigarette
When it comes to desire, nicotine has been a great teacher. I’ve quit smoking more times than I can remember, and it is a lesson in craving in its purest, chemical form. Because, when you come down to it, there is never a justification for smoking. Ultimately, there is only the bare sensation of wanting, and the thoughts, emotions, and stories that bare sensation stirs up.
When you strip away the fantasies and projections it’s wrapped in, craving feels kind of like irritation. Like an unbearable itch. Anticipation that is both sweet and excruciating. That contains promise, and also deprivation. That teases and titillates the ego. That stimulates and focuses attention.
Most of the time, desire is more than just craving. It is tangled in our identities, our values, and what we think we owe other people. It gets complicated.
And desire is a strange, slippery thing. Even when you get what you want, you’re never going to be satisfied. The Buddha observed that 6,000 years ago. As my body heals and I pass one milestone after the next, I do celebrate the wins, but my sense of lack keeps pace with me; my desires just keep moving up Maslow’s damn pyramid. Needs become wants, and wants become irritating, nagging reasons to continue to feel aggrieved. My desire is conditioned and reconditioned as my situation changes.
Right now, I itch for intimacy. I peer into futures that might never materialize, fretting because my immune system will probably always be too busted to thoughtlessly share air with an intriguing stranger. I lean into memory. I crave the magic of closing a circuit with a glance. The electric high of creating a badass l o o k and magnetizing attention from across a crowded bar. And that feeling probably won’t be as easy to achieve, I speculate, masked and in my 40s, as it was in the pre-coronavirus days. That is, assuming I’m ever well enough to hit a bar again.
This line of thinking leaves me feeling thwarted, restricted, and deprived. The princess locked away in the tower is more resonant than ever.
Meanwhile, my sicker self from six weeks ago scoffs at me across time. Where’s your sense of perspective? she asks. What happened to “all I want in the world is to go outside?” Why are we thinking about this nonsense? What gives?
Desire is a super power: Audre Lorde and “The Uses of the Erotic”
I don’t want to give myself grief for having desires. Especially desires that are pretty basic to the human experience. It’s not like I’m a billionaire hoarding wealth for its own sake. Or a nicotine addict wishing for a cigarette even though it will actually potentiate, rather than satiate, her cravings.
I also don’t want to demonize desire itself. Desire is a facet of the creative life-force that Audre Lorde names the erotic. For Lorde, desire is a mirror that shows us our deepest needs and values, and pushes us to pursue our true callings in defiance of a culture that would have us repress and kill off parts of ourselves. No discussion of desire would be complete without mentioning Lorde’s classic essay, “Uses of the Erotic: The Erotic as Power.”
“We have been raised to fear the yes within ourselves, our deepest cravings. For the demands of our released expectations lead us inevitably into actions which will help bring our lives into accordance with our needs, our knowledge, our desires. And the fear of our deepest cravings keeps them suspect, keeps us docile and loyal and obedient, and leads us to settle for or accept many facets of our oppression.”
― Audre Lorde, Uses of the Erotic: The Erotic as Power
For the past five or so days, I’ve been in what people with ME/CFS colloquially call a “crash.” That basically means that my nervous and immune systems are FREAKING OUT with disproportionate fury because I pushed my body past the invisible, unpredictable line of its energy limits. I had been so excited to be able to go outside! I guess I overdid it. So now I’m stuck in bed, waiting for the symptoms to ease, curled on my side with my limbs tucked in like a boiled shrimp, my body humming and twitching with inappropriate adrenaline, trying to relax, trying to rest, and everything hurts, and I’m bored out of my mind, and my migraine medicine is only barely working, and god, I miss the person I used to be.
I’m a Leo rising, and I love my theatrical streak. I love having an aesthetic and putting together a look. I love owning the karaoke stage. I love the sharp and nuanced energetic exchange of flirtation, and the collaborative, cathartic engine of intimacy and sexuality. I love rising to the challenge of witty repartee, and the thrilling novelty of interfacing with a foreign intellect. I love feeling strong, playful, fierce and embodied. I don’t think the answer to my predicament is to shut down my desire for these things, even if, from the confines of my second story apartment tower, they are a torment to think about. They also remind me of who I am.
Desire is a torment to the characters in Rapunzel, but it is also the prime mover of the story; without desire, there would be no story at all. No locked-up girl child, no siren forest song, no forbidden romance, no daring escape, and ultimately, no blissful reunion.
At the same time, there’s an edge at which desire becomes corrosive and embittering. Especially when you want something that you really don’t have access to. If your situation is unendurable, and you can’t change your circumstances, the best way forward may be to change what you want, or find deeper satisfaction in what you have. There may be limits I have to accept, for the time being, at least. I mean, I’m definitely not ready for the apps right now.
And, as I observed in an earlier writing, when desire comes up against limits, it can give rise to creative solutions that bring us to completely new places. Maybe my current limitations can be an invitation to explore new ways of being in intimacy.
Or maybe that’s a horseshit platitude. I go back and forth on that.
So, from my urban tower, I work the edge of desire and acceptance. I take this time to try to figure out what I really want. I reassure my better nature that I’m too mature to text the toxic exes. And I ask myself: When is it skillful to lean into desire as a portal to authenticity and self-actualization, and when is it skillful to curb the jagged edge of craving and find contentment within the boundaries of my current predicament? I don’t have any easy answers.
I’ll give the last word to PP Arnold covering The Rolling Stones.
Your thoughts in the comments, as always, are encouraged and appreciated. Talk to me about desire, craving, and the frustration of not always getting what we want.
I desire to read more of your prose. You are gifted.
We do a lot of identity-building around our desires, even our most simple and easily categorizable desires. "I'm a foodie." "I'm a smoker." "I'm an alcoholic." "I'm a lover, not fighter." It makes intuitive sense. You are what you do, you do what you want.
But then, when the desires get more complicated and hard to pin down, so does that sense of self. You like eating? Go out and eat! You like the ineffable feeling of mystic communion with a de-semiotized reality? Um.... go out and eat?