We live in a world where the monsters have either disappeared or are domesticated and not in the slightest bit scary. The savage beasts and cruel dragons, even the werewolves and vampires, are no longer violators of damsels and devourers of children; they are tragic, wounded, misunderstood creatures that act not out of inherent evil but because the world has compelled them to. When Francis Ford Coppola turned Dracula into a widower devastated by the loss of his beloved, it was effectively an end to vampires and, for that matter, all other monsters, since they too had a measure of humanity irrevocably conferred on them. Sure, they might be a little different, but in a world as diverse as this, who isn’t?
I am one of the beneficiaries of this shift in perspective. In the past, I would have been classed among the monstrous; now, I have to explain what makes me feel that I’m a monster: It is my skin. I’m 42, and for the past 20 years I’ve had a severe form of psoriasis. During some outbreaks, itching, bleeding scales will cover more than 80 percent of my body. There have been summers when I couldn’t wear T-shirts or shorts because I was so ashamed. But that’s nothing compared with the pain that I experience every day. Psoriasis is an autoimmune disease; my body is attacking itself. Society may no longer condemn me, but I am still an ugly and misunderstood creature.
Historians have made the case that during the Middle Ages in Europe, psoriasis and other skin diseases were mistaken for leprosy, which had been endemic to Asia, and that most of the people thought to be lepers were in fact, like me, sufferers of cutaneous illnesses that were not at all contagious and, in most cases, no more serious than being unpleasant to look at. And so that they didn’t have to be looked at, these individuals would get cowbells hung around their necks so that they could be heard coming, or they would be sent off to the thousands of lazarettos that can be seen to this day across the fields and hillsides of Europe. (Some of these would become our modern-day hospitals, where people are sent to recover rather than to die in neglect.)
I am lucky enough to be living in the 21st century and to receive advanced medical attention instead of a bell or a cell inside one of those prisons. I am free and happy. Nobody apart from myself calls me a monster. But I also live in a society obsessed with physical appearances, a place where millions suffer horribly because they don’t have the kind of body or skin considered beautiful or acceptable. The cosmetics industry wields huge power, and few branches of medicine are as lucrative as plastic surgery.
In a fast-moving world of first impressions, where conversations have been replaced by “likes,” our relations with others are governed by the skin. We speak with the skin: We get tattoos, we sit in the sun for a nice, deep tan, we cover up or show ourselves off, we get piercings or smear ourselves with expensive creams or go for Botox treatments in an attempt to remain eternally young. We say more about ourselves with our skin than we do with our words.
And yet, at the same time, we pretend we don’t care about it. Skin-related issues — apart from those that affect politics, like racism — aren’t generally deemed worthy of writerly reflection. It would be frivolous, narcissistic even, to explore these questions when there are so many serious subjects to contend with. Nobody cares about the feelings of shame experienced by those with skin conditions, their panic at the prospect of a sunny day at the beach, the tactics they employ to camouflage themselves or their desperation at failed treatments. There are far more important illnesses deserving of literature’s attention.
For a long time, this was my attitude as well. I never considered writing about my psoriasis because I resisted the very idea that it was a problem. It wasn’t part of me. My body wasn’t part of me; I existed purely in what was noncorporeal, in my writings, my intellect. All the itching, the patches of peeling, flaky skin — these were private problems, nothing to complain about.
I would sometimes come across historical figures and writers who suffered the same illness as I do. Joseph Stalin, for example. And Vladimir Nabokov. Their biographies would barely mention it — a couple of lines, two or three paragraphs at most. Sometimes just a footnote. But I always found this striking, and when I began making inquiries, I almost always discovered that the skin problems of these people had a considerable influence on their lives and work. Their skin was instrumental in shaping their ways of perceiving, understanding and relating to the world, which was almost always from a position of shame and rage.
Studying Stalin’s life, I began to entertain the notion — I’m a writer, it’s my job to exaggerate — that the gulags were a kind of revenge for all the intolerable itching. Of course, not everyone with psoriasis becomes a villain. Most of us are good people. But Stalin wasn’t the only evil so-and-so with psoriasis: The Colombian drug kingpin Pablo Escobar had it, as did Abimael Guzmán, the leader of the Peruvian terrorist organization Shining Path, whose arrest came about because his pursuers found jars of his skin cream in the trash cans at his hide-out.
Very few dared to write in any depth about their illness. John Updike is one exception. He dedicated a novel and part of his memoirs to psoriasis, and it was thanks to those that I became aware of my own monstrous nature. I wrote a book to explain myself through these figures. My life, like theirs, is governed by my skin condition.
Psoriasis has become an identity. People usually identify themselves as journalists, lawyers or some other profession. Or perhaps they identify by nationality, race, gender or sexual orientation. Who identifies themselves with a chronic disease? But when I say I am a monster, I am choosing psoriasis as an identity. My bad skin has changed my personality and the way I look at the world and my relationships. I have alienated others, developing a sort of soft misanthropy. It has also influenced the way I write and the topics I choose in my books. I usually focus my attention on minor characters, those who attempt to escape the look of others. I don’t like being touched; I feel comfortable only in the shadows.
At the beginning of the pandemic, when social distancing came into force, a lot of the journalists interviewing me about my book asked about the importance of touch, now that it was being taken away from us. My answer was that distance would make us a little more cynical. We humans need to touch and be touched; we don’t know how to love without it. Distance makes us cold; it makes us care less about one another. I have spent half my life struggling against this coldness, and I know how much effort and self-awareness it takes not to end up turning into a raging little Stalin. I can’t not be a monster, but I can control my tendency to bite and lash out.
The New York Times
