I. Monster
I’m going to tell you a story I haven’t told anyone before.
It’s 2021, and I am as sick as I have ever been. Later, these symptoms will recur while I am under a doctor’s care, and I will learn that there is a name for what I’m experiencing: spinal meningitis. The lining of my spinal cord has been colonized by a herpes virus—probably a complication of immune dysfunction from ME/CFS, a complex disorder of the nervous and immune systems that hit me like a cement truck following a COVID infection in 2020. I will take prophylactic medication for it for the rest of my life.
At this time, I don’t know that. I only know unendurable pressure, migraine. Intermittent loss of consciousness. My fever spikes, and I have this bizarre, vivid waking dream.
I’m aware of myself lying on my back in bed, arms limp by my sides, of the stiffness in my neck, of fever and pressure and pain that won’t quit. And I’m also standing on a deserted beach by the large, dark entrance to a cave. The scene is vivid—seagulls making all kinds of noise, the ocean smell of salt and clean rot, the glare of the sun, flecks of mica glittering on the face of the rock. When I enter the cave it’s cool and dim, but not dark, with a towering ceiling—a cavern, really—and a smooth stone floor, and almost immediately I hit this spiral staircase that goes up, up, up, and down, down, down. Pick a direction, I think to myself, and what the hell, so to speak, I pick down, and I start descending the smooth stone stairs. I walk for awhile, and finally the staircase ends in this brightly lit room, and the room is a laboratory, and there’s my ex—the guy who gave me the herpes virus in the first place, incidentally, the virus that I don’t yet know is causing my condition—standing at a lab table wearing a white lab coat and doing god knows what with beakers and Bunsen burners and scales and measures. He seems to register my presence but is totally absorbed in what he’s doing. I just stand and watch. It takes me a minute to notice that, behind him, on the floor, under another lab table pushed against the wall, there’s this cage. And in the cage is my exact double. I look back at my ex quickly but he’s still totally absorbed. So I kneel in front of the cage, where this traumatized part of me is still trapped, almost a decade after the end of this relationship, and she scoots forward on her knees and grabs hold of the bars, and she’s looking at me, silent and trusting, big-eyed and calm, and I know that I’m here to let her out. Which I don’t have the foggiest idea how to do. And then I think to myself, wait, this is my dream, I can do whatever the fuck I want, and I decide that there’s going to be a key that will open the cage, and it’s going to be right beside her, inside the cage, and sure enough it’s there. She picks up the key, reaches through the iron bars and unlocks the cage door, flashes me a huge thank-you grin and then vanishes, and I can see that behind her is a tunnel she has dug into the wall like Tim Robbins in the Shawshank Redemption. I turn back to my ex but he has disappeared and in his place I see my father, measuring, calibrating, working the experiment, paying me no mind.
“Oh come on!” I say, because that’s a little on the nose, even for my subconscious, and I stalk off in disgust, back up the spiral stairs, leaving the laboratory behind.
Up the stairs I climb, up, up, up, and the quality of light is changing, and all at once I’m not underground anymore, rather, the naked staircase is spiraling into the sky, which is such a breathtaking, vivid blue that my eyes water with the suchness of it, and I’m climbing above the clouds until I can’t see the ground anymore, and then the staircase terminates in a room—a kind of floating, disembodied room, a head perched on the long spine of the staircase. The room has a floor and ceiling but no walls, and in the center is a glowing crystal like a lighthouse beacon, and in every direction is the impossibly blue sky dotted with fluffy white clouds. And I am still aware of myself lying in bed at home, terrifyingly sick, and I ask no one in particular, “what’s wrong with me? What do I do?”
And suddenly I know that I have to take a leap of faith. I have to step off the edge of the room and out onto thin air, into the blue, to get the answers I seek.
So I take a deep breath and I step out onto nothing.
I am floating. The room and stairs are gone. I am floating in a world of blue sky and bright light and little fluffy clouds and I am not alone. There someone floating in front of me. A man. No. A monster. With blue skin and black hair and wild, reckless eyes that wake something reckless and destructive in me. We float, regarding each other.
“Am I going to be okay?” I ask, with sudden trepidation. The monster smiles, and its mouth is crowded with bright white needle-sharp teeth. It shakes its head slowly, as if savoring a delicacy. I want to scream.
I open my eyes and the dream fades.
My dream both begs for and resists sensemaking. It is potent with resonances, but does not hang together in a way that is neat and tidy. The uncanniness of the synchronicities—the appearance of the ex who gave me the virus; the image of a head sitting on a spine—are compelling. And Dr. Freud might have a field day, if he ever got his grubby patriarchal fingers on this document. But he’d also be left, ultimately, with a lot of strangeness and mystery.
Memory is like that, too.
“Freud sees nothing and understands nothing…he glances at his dog and answers, ‘it’s daddy.’”
-Deleuze & Guattari, from A Thousand Plateaus
II. What Narcissus saw
When I was 34, my at-the-time partner noticed a lump in my right breast. The cancer-industrial complex is real, and it processes people with the dumb efficiency of an assembly line. For the first few months of mammograms, biopsies, and consults, I was told again and again that the lump was likely benign. When my surgeon finally called with the news that I had a grade three tumor that had spread to my lymph nodes, I laughed, because of course, why not?
I was a strange character in my 20s and 30s. Beautiful, brittle, ferociously intelligent, weirdly—probably maddeningly—naive, and also a dedicated party girl, a devotee of peak experiences, a lover of music and art, kind of a scenester, petite and harmless looking, a high femme with an a e s t h e t i c, constantly underestimated, especially by men. As an arts journalist, I documented my experiences with wide-eyed narcissistic (in the original, mythic sense of the word) obsession. No one really knew what to make of me, least of all me. After my diagnosis, all that had to stop. First for cancer treatment, and then as the waters of chronic illness began to close over my head.
III. Quantum pasts and futures
What are we doing when we write about ourselves? When we write our own histories? When we narrate our identities into comprehensibility, into existence?
At present, I am working on a memoir. And as I reach back through time, connecting to ephemeral and often unreliable memories, checking and rechecking them against what documentation I have, stringing them together like glowing, transparent beads into something resembling a story, into something that might make sense, as I try to craft linearity, it feels more and more self-evident that time is nonlinear, that experience is holographic, that memory is emergent, malleable, dialectical, that the present moment is a strange kind of portal through which, to borrow an analogy from the Greeks and the Norse, the fabric of history must be woven and rewoven, called and re-called into being. The deeper I fall into this work, the more time seems shimmering and unreal. My present seems to change shape as I reorient with respect to the past, like entangled quantum particles speeding apart from a single point.
Under a BQF intersectional time orientation, the past and future are not cut off from the present - both dimensions have influence over the whole of our lives, who we are and who we become at any particular point in space-time.
-Camae Ayewa and Rasheedah Phillips, Black Quantum Futurism
IV. Into thin air
The biggest difference between my experience with cancer and with ME/CFS is that my cancer had a decisive, well-structured story. This isn’t true of a lot of cancers; many folks, especially those with complex or metastatic disease, have cancers that refuse to comply with the rules and demands western medicine has set for them, that push up against the rigid limits of our stories. But for someone like me, whose cancer (so far) seemed to break against the wall of surgery, chemo, and radiation, cancer was a story with a beginning, middle, and end. Every step of the way was prescribed. My symptoms were mapped out on mass-produced pamphlets. My treatments had been so well-studied that I was not even presented with choices about what to do next; there was always a best practice, a right answer. An authority was always there to tell me what came next, where I was on the map of my cancer treatment “journey.”
On the other hand, the crisis of undiagnosed and poorly understood illness is like stepping onto thin air. At first, when tests came back normal, doctors insisted—bizarrely, impossibly—that there was nothing wrong with me. Even now, with a diagnosis and support from expert specialists who I trust to save my life—because they have—there is too much that is not known. There is no clear etiology or prognosis for this disease. COVID doesn’t trigger postviral disease in everybody. We find treatments that work through educated trial and error. Even when we know what treatments tend to work, we often don’t know why. There is a sense of being adrift, unstoried.
V. What Narcissus sees
I’m 43 now. Have I mentioned that in this newsletter? I don’t think so. It’s been almost a decade since my ex (who copyedits this newsletter—hi Tony!) found the lump in my breast. It’s been almost five years since that first COVID infection sent my nervous and immune systems into critical failure, triggering the onset of catastrophic postviral disease. It’s been four years since I first experienced spinal meningitis, and eleven years since the other ex, the one from the underground fever-dream lab, exposed me to the herpes virus in the first place. It’s been almost one year since my ex-spouse and I finalized our divorce. These touch points are like stepping stones I can hop between as I cross a river. What is between them is fluid, sparkling, not yet defined.
I am still mapping the ways in which I have changed. Certainly, I’m not as clever or quick as I was in my 20s and 30s. I have more patience. Word play comes slower, but my internal world is also a kinder place with softer edges. I am more focused and reliable. Eclectic, mostly Buddhist-derived spiritual practices support and sustain me. I have fewer relationships, but they have great strength and depth.
VI. Whiplash
Whiplash can occur when a car is rear-ended or stops suddenly. Essentially, your body, seatbelted to your vehicle, starts and stops with your car, while your head snaps back and forth according to the laws of physics, forcing the muscles, ligaments, and bones of your neck to flex or extend past their limit. Often, it takes time for the body to register the damage that has been done. You might not know, for a few days after the incident, how badly you’ve been hurt.
When I was first diagnosed with breast cancer, in an effort to orient myself, I collected stories by cancer survivors. Many survivors write that their experience with cancer left them changed, that their brush with death transformed their orientation toward life, that their priorities snapped into focus under the newly polished lens of their mortality, that their lives shone fresh with preciousness born of precariousness. I half-expected to finish chemo and open my eyes to the sparkling world of suchness that Aldous Huxley describes in his experiments with mescaline. I wanted that for myself.
When I did not feel any of that, I was queerly disappointed. I joked to friends that I had been promised a spiritual awakening. I had passed through the gauntlet; why didn’t I feel like I’d leveled up?
A decade later, I wonder if the ache of spiritual whiplash has finally set in. Grief is a potent consciousness-altering drug. In the presence of complex and ongoing grief, all experience becomes cathartic, every moment becomes unbearably precious, sweet, and harsh. Sometimes I wonder how this body, this poor, inflamed nervous system, can hold the feelings and impressions that flood through me? After many years of acute and chronic illness I have a deeper understanding of the fact that impermanence is real, that suffering is always close, that nothing is guaranteed. And that adds an edge of terror, exhilaration, and clarity to my experience.
My body is the sum of everything it has been through until now. My body is made of history. Momentary and tangible, my body is the fulcrum from which memory and identity leverage into the past and future. It both demands and resists sensemaking. It suggests stories—diagnoses, histories—that are always unsatisfactory and incomplete. Ultimately, we are left with strangeness and mystery.
“Stop making sense, stop making sense, stop making sense making sense.”
-Talking Heads
Meet me in the comments
The stories we tell have so much power to shape how we understand ourselves, and how others understand and treat us. Let’s talk about diagnosis (and lack thereof). Let’s talk about bodies, memory, history, and how we change over time. Has an encounter with mortality shaken you awake? Or did you, like me, feel cheated out of your spiritual awakening? And what the hell are dreams, anyway?
Thanks for getting weird with me, dearest reader <3
I still have to return to this, but this is one of my favourites. I’m so happy to witness your growth and creativity here. Happy for substack for facilitating this connection.
"a little on the nose, even for my subconscious" - I also hate it when my subconscious is painfully trite. Feels like such a missed opportunity. Almost like failure, somehow. "Oh man, I thought I was deep!"