I was 20 years old when the first lesion appeared. One morning, upon waking, I discovered what looked like a pale rash about the size of a silver dollar on my left thigh. Over the ensuing years it spread, covering my thighs, my arms, my back, and even my bottom. The lesions thickened. And sometimes cracked. It felt like my whole body was on fire.
Doctors were baffled. What was at first assumed to be some sort of skin infection failed to respond to the normal course of topical steroids and antibiotics. But it didn’t look like eczema, psoriasis, or ringworm. They even threw out the dreaded word “leprosy” once or twice before quickly dismissing it. Repeated biopsies and allergy tests were inconclusive. I was passed from specialist to specialist. Most visits concluded with the doctor calling in every single intern and nurse to gather around and gawk at my naked body.
It wasn’t until one of the lesions on my left shoulder blossomed into a tumor—growing rapidly, until it was the size of a tangerine—and the surgery to remove it, that doctors were finally able to diagnose me. I had a rare form of Non-Hodgkins lymphoma called Mycosis Fungoides: a normally slow growing (but incurable) cancer that causes my t-cells to grow thick, scaly patches and tumors all over the skin. Early stages’ treatment may include phototherapy (a form of UV radiation akin to burning your naked body three times a week) to try and slow the spread. But once it progresses internally, the only options become chemotherapy and eventually a full stem cell transplant.
Essentially, I had greyscale.
I saw Shireen Baratheon’s scarred face for the first time in 2013, three years before my diagnosis. I remember laughing to myself and thinking, “Her face is scarred just like my butt!” I connected with this lonely young girl. My then undiagnosed illness had not yet spread to my face, but I felt the pressure she was under to stay hidden. To shelter myself from stares and murmurs. The perverse need to protect others from having to see my deformities. She was walled off and isolated by her family as I was walling off myself. I wore tights and long sleeves and purchased so much Sally Hansen Airbrush Leg foundation they should have made me an honorary spokesperson.
Even after I had a name for it, I had to guard myself. People, even family members, fearfully assumed I was contagious. There was one horrific Thanksgiving in 2016 where a relative refused to share a plate of food with me because they “couldn’t risk catching what I had.”
I won’t even go into what it was like trying to date in Los Angeles with it, but I will say that watching Shireen’s bravery and kindness were brief calms in the storm. True, she was a sheltered and naive child, and she didn’t get much screen time. But I took comfort in seeing her moments of goodness. And when
Jorah, unlike Shireen, became infected much later in life after grappling with a dreaded “Stone Man.” And much like his zombie flick predecessors, he hid his wound and his infection from the rest of his crew. He had a mission to complete and could not risk social exile or execution.
So intent on ridding himself of the disease, Jorah risked an experimental and dangerous treatment. He let Samwell Tarly flay the skin from his back and chest. Watching this excruciating scene, I found myself empathizing with Jorah. Unfortunately, chopping off my tumors was not a permanent solution. The cancer always came back. Instead, I endured constant second degree burns in order to kill the cancer cells in my body; when that stopped working, I enlisted in several clinical trials and eventually chemotherapy.
I sacrificed some of my hair, the feeling in my hands and feet, the contents of my stomach, and even my thyroid. (I’m currently in a new clinical trial study as I write this.) And so I understood his desperation. His need to do whatever it took, endure whatever he could, if it meant a cure. If Shireen was my lesson in patience, Jorah became my symbol of tenacity and endurance. Whatever I could do to stop the cancer from spreading further into my internal organs, I would do it.
George R.R. Martin did not invent the idea of greyscale exactly. Greyscale and “Stone Men” come from a long tradition of popular culture viewing skin deformities as monstrous. We see it in The Bible; society deemed the lepers “unclean” and cast them out as a way to protect communities from infectious diseases. Ever since, the binary of clear skin as pure and blemished skin as corrupt has remained constant. Often depicted as moaning, wailing mobs, sufferers are one step removed from the violent bloodlust of zombies.
The fear of contagion has seeded a more sinister fruit. This notion of being “unclean” has become synonymous with corruption and evil; that which destroys your outsides must also destroy your insides. Or perhaps even, that your rotting soul itself made you vulnerable to this decaying of your flesh.
We see this on a minor level with the greasy, pimply, acne-scarred bullies of teen comedies like Grease. In Ionesco’s classic play Rhinoceros, the transformation of people into grey, scaly-skinned beasts serves as a metaphor for the rise of antisemitism and fascism that he witnessed as a child in Romania.
The body horror of mutating, pustulating skin is the hallmark of director David Cronenberg. But this fate always afflicts characters who have, due to a fatal flaw, in some way “earned” it. In The Fly, Brundle’s hubris and impatience lead to his transformation into the grotesque monster. In Videodrome, Max Wrenn earns his “new flesh” by callously trying to capitalize on the torture and murder of anonymous victims.
And for as many times as we hear the cliches that “beauty is only skin deep” or to “not judge a book by its cover,” these stories maintain the opposite. Our culture obsesses over the idea that beauty means purity. In 2019, the skincare market in the United States generated $18 billion. Our skin, society teaches us, represents our health, our morality, and our worth.
Despite their grizzly ends, I look back on Shireen and Jorah and I take solace in seeing their stories subvert the popular tropes. Yes, the show depicts hoards of violent Stone Men trying to infect others. But they are not just the terrifying Other. Shireen and Jorah are afflicted, but the show treats them with the empathy and complexity that all humans deserve.
Shireen has accepted her condition; Jorah tries his hardest to defeat it. In both stories, we see the repercussions of living in a world that hates and fears you for an illness outside of your control. And as a living Stone Man, I appreciate that.