​Ankylosing Spondylitis (AS) is not just an illness I live with—it is the symbol of my wound. It represents the profound grief of losing physical abilities, the lingering shame of being marked by disease, and the burden of carrying an awareness of the destructive process unfolding inside me, like an accelerated form of aging, that reshapes not only my body but also my identity. The wound has shaped my life’s journey, a story of anxiety, transformation, destruction, and the painful pursuit of integration. As a symbol unto itself, how can I visualize it?

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AS also seems to define me, as if it is not just a disease I have, but a sickness I am. There is something inherently foul and shameful about it—a sense of corruption, as if the body has betrayed me. It feels primal, brutal, like an ancient curse. The way AS is triggered by infection, environmental stress, and often coincident with first sexual activity feels like a contamination, a fouling deep in my bones. This dynamic evokes a sense of original sin: being marked, from birth, as if this suffering is not an affliction but a curse. And I was born with an extra digit, polydactyly, that was surgically removed when I was four years old, so yes, there was a mark.

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AS was not my first encounter with suffering. I was nine when my brother was diagnosed with Ulcerative Colitis—a violent eruption of sickness in our family that rewrote my sense of safety. As my parents focused their full attention on my brother, I was left unseen, unacknowledged, and expected to be the “good child, uncomplicated and with few troubles. I watched as my brother’s body betrayed him, as pain and blood became a part of daily life. He nearly died so frequently through elementary school, middle school, and high school that death was an unacknowledged guest. I was the younger brother, the one not touched by the disease, but this did not bring relief; it brought the existential fear that I too would become sick. It was an internalized voice faintly heard, a dread echoing a curse. Survivor’s guilt became a secret wound, a voice that whispered, “You are next.”

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I first glimpsed the shadow of my own suffering in Dennis Potter’s The Singing Detective (1986). Michael Gambon’s character, a man twisted and immobilized by Psoriatic Arthritis, lay trapped in a hospital bed—delirious, fevered, his body betraying him even as his mind dissociated into fantasy and delusion. Potter, too, lived with the torment of Psoriatic Arthritis. This disease gnawed at his body even as it sharpened his creative voice. In Potter’s work, the grotesque and the sublime are forever intertwined—illness as a wound but also as a portal, suffering as both damnation and revelation.

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But it is not just The Singing Detective. Potter’s Brimstone and Treacle presents healing as a demonic intercession—a violation that precedes miraculous recovery, a darkness that imposes its own twisted form of grace. The demonic, the corrupted, the predatory force that violates also becomes the herald of transformation. In that film, salvation emerges from the foulest depths, and healing is a cruel inversion—a pact with darkness rather than light.

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Dennis Potter was sexually assaulted as a teenager—an event that deeply affected him. Though Potter seldom spoke of it publicly, this trauma is widely understood to have shaped the recurring themes in his work: guilt, bodily degradation, perversion, and the blurred boundary between victim and perpetrator. His characters often grapple with physical illness as both metaphor and symptom. At the same time, sexuality, especially its darker, repressed forms, emerges with disturbing intensity.

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Lee Miller, likewise, was sexually assaulted as a child. In her early years, she contracted gonorrhea, reportedly treated with carbolic douches—a brutal and painful regimen prior to the advent of antibiotics. This trauma and her medical suffering shadowed her adult life. Her constant movement, reinvention, and restless search for artistic and personal identity can be seen not just as ambition, but perhaps also as a way to outrun a wound that never fully healed.

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Is this the nature of my own suffering? Does the venom of AS, this slithering, freezing serpent within me, whisper of some revelation in the darkness? Or is it merely a violation—an evil that takes root and poisons me from within? Am I to hope for intercession even if it is demonic, even if the venom is the key to something I cannot yet see?

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In Brimstone and Treacle, the violation is not metaphorical—it is rape. This brutal and obscene desecration births a twisted form of healing. A young woman, comatose and helpless, is raped by a demonic figure masquerading as a savior. From this violation, she awakens and is healed. Salvation through darkness, grace emerging from degradation, the miraculous born of violation. Is this the nature of my own suffering? Is AS a desecration that writhes within me, an infection birthed from the foulest depths? Do I carry this demon within, not as a punishment alone, but as a possibility of monstrous grace?

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Or is it nothing but poison—an evil that corrupts without insight? Am I to hope for a revelation, even if it comes through the jaws of darkness? Am I to imagine a redemption drawn from the venom itself?

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But what is AS if not a disease that thrives in shadows, born of infection, ignited by stress? It is a sickness that emerges from low places, dirty, shameful, where life is most exposed to decay. I think of dark alleys, damp basements, the stink of rot in forgotten corners. There, in the foulness and in the contaminated air, this venomous serpent is born, feeding on the filth, growing strong in the gloom. My suffering is not merely pain—it is a reminder of these places, of shame that seeps into the bones, of corruption hidden beneath the skin.

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AS is my own grotesque revelation. It is a black, icy ooze—a venomous serpent that slithers beneath my skin, coiling around nerves, freezing my muscles, turning my joints to stone. It cannot be reasoned with, nor can I fight it. It is a parasite, a shadow that speaks only of suffering. It is also a vision, a dark window through which I glimpse the terrible majesty of suffering. Another image comes to mind: picking up a dark, sticky, seductive candy from the ground and eating it—inviting the infection, welcoming the sweetness of something I know is contaminated, consuming the curse willingly, or at least with a strange, fated complicity.

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But another image rises in my mind—an anchorite’s cold, dark cell walled in stone. Both men and women became anchorites in the medieval world—anchoresses like Hildegard of Bingen, whose visions burned like stars in her darkness, and male anchorites like Wulfric of Haselbury, who lived a life of isolation and divine torment. Yet my anchorite feels more like a figure of descent, willing, inward-facing, and fiercely devoted. She is not escaping the world but moving toward a deeper interior, choosing silence over spectacle and shadow over surface. Yet, there is a sense that this anima is walled away to avoid shame. Perhaps my own shame has locked her here, a sacred presence turned to shadow, a voice silenced beneath the weight of suffering. AS is my anchorite’s cell. It walls me in, sealing me within my body, without recourse, without escape. And within this cell, the serpent comes alive.

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And yet, I find myself isolating more and more. Physical vulnerability makes the world feel threatening. I retreat, wall myself off, become the anchorite, and the serpent coils tighter within. My cell is both prison and sanctuary, a place where the venom whispers and the walls close in. Isolation is a paradox—a sanctuary of safety and a suffocation of the soul. Each withdrawal is a gesture of self-preservation that deepens the shadow.

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And as I write this, I listen to Hildegard of Bingen’s Canticles of Ecstasy. Through the choir, her voice rises like a flame in the darkness, pure and untouched, a vision of divine fire within the cloistered cold. I think of the Fisher King in his boat, casting a line into the mist, a ritual of hope in desolation. I cast my line into the dark, hoping that some spark of grace might rise, even from this venomous silence.

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I often dream of buildings—winding corridors, hidden rooms, secret places I know must exist but can’t reach. Stairs that lead nowhere, sudden leaps across chasms, tiny passages I must snake through to find what? These labyrinthine dreams disorient. They are emphatic. But the question remains—does the anchorite escape into the world, breaking free from the cell? Or does the anchorite dive deeper, fully penetrating and inhabiting the cell’s darkness, yet somehow transcending it? Perhaps transformation is a matter of descent, of pushing deeper into the shadows, finding the heart of the serpent’s lair to make it sacred.

 

Hildegard’s Vision and the Shadow of Suffering

Like Hildegard, I too create in the shadow of affliction. She experienced searing physical distress—bouts of paralysis, migraines, and mysterious illnesses she interpreted as divine scourges. These afflictions were not merely obstacles; they were crucibles. Her artwork, writings, and music emerged from these crucibles as visionary expressions, forged in the tension between pain and grace.

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In my own work—small copper panels etched with figures of shadow and anima—I engage in a layered process. I apply paint, overlay gold and copper leaf, and then scratch through the surface back to the metal below. Scratching through paint into copper, like scratching through pain into meaning. Each mark becomes both wound and revelation. In these acts of image-making, I discover what Hildegard must have known: the vision is not beyond the wound but inside it.

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Copper is a paradox—both base and precious. In alchemy, it is a metal of Venus and the goddess Aphrodite. Still, it is reputed to have healing properties, a salve for arthritis. And here I am, painting images of my own anima and shadow on copper. One figure is shadowed masculinity, a dark force lurking beneath the surface. The other, a figure of anima energy, feminine, veiled, half-revealed, and half-concealed. Copper holds these figures, just as my cell holds me.

 

Perhaps this is why I feel trapped, because the serpent’s coils are not just poison, they are a form of writing. And the cell I inhabit is a sacred space with venom inscribed as vision. But it is not only writing. It is painting—small sacred icons, figures wrought on copper panels, where each stroke must be precise, each image held in permanence.

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Is Hildegard’s vision the fire of heaven or the flickering of neurons? Ankylosing Spondylitis constrains my body, yet offers a vision of initiation. The serpent is poison and medicine, a venomous guide who whispers of shame but also reveals the hidden light. Perhaps the true vision is to embrace both—to stand on the edge of light and darkness, as Hildegard’s angels do, burning in secret yearning toward God.

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Epilogue: The Resulting Dream

The night after writing this I dream I am alone in a vast city, familiar yet unplaceable, its streets empty, its highways winding, its rivers circling like memory. The city’s structure represents the regrets, ambitions, and broken maps of who I thought I would become. It is my illness made visible: Ankylosing Spondylitis, not as a diagnosis, but geography.

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I am being pursued by two zombies. They are deformed, partial, childlike, and clearly a couple. They are not monstrous, but lost. My nauseating association is that these are children who were not born whole. They come for me not with rage, but with need. And I understand, with a lucidity that belongs only to dreams, that I must crush their heads to free them.

Despite the horror I feel, there is deep sorrow and grief for them. Especially the first, who watches me kill the second, and then presents her own small head. Grief mirrors the sadness in my waking body, the sorrow that comes not from loss alone, but from the cost of growth.

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This violence is transformational. Each crushed skull is a liberation. A piece of myself unburdened. They are my unlived lives, my frozen selves. They are emotions I couldn’t hold, identities I abandoned, roles I feared. They are shadow.

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The city becomes a labyrinth, and I understand it now as the continuation of my other dreams—the strange warehouses, the unreachable staircases, the unknown classrooms. These places are all the same place. The path of the dream is the path of suffering. It leads not upward or outward, but deeper.

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These zombies are my serpent made visible. Like the black ooze in my body, they pursue, haunt, and ask for acknowledgment. But they do not want to devour me, they want release. And like the paintings I etch into copper, I render them, terrible and sacred, so that I may one day let them go.

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In this dream, I am a vessel for redemption, both the slayer and the redeemer. It represents a step further into becoming whole. Toward the end of the dream, I realize I am dreaming which is unusual for me. This awareness shifts the sorrow and grief into reflection. And when I wake, the words echoing in my head are not terror or regret, but: amor fati. Love of fate. Acceptance of what is mine to carry.

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Amor fati remains with me. To love fate is to accept not only the beauty but also the brutality of what is given. It is to find meaning in the venom and the disgusting candy treat, to see the serpent as both tormenter and teacher. It is to dwell in the anchorite’s cell not with resignation but with reverence, and to discover, even in the deepest wound, a glimmer of light.