I'd Always Been Told I Was Beautiful. Then a Rare Disease Transformed My Face.

The doctor examines me, tells me to smile, pucker my lips, lift my eyebrows. She takes pictures and videos of me, looking at my face with an exact and judging eye. At this check-up, she will determine whether I need Botox, my last hope for gaining any more symmetry in my face.

In my profession, it’s not unusual for someone to give me direction, critique my face, and offer me Botox. I’m a 38-year-old actor who, in the past, has proudly declared that she would never get “work done.” But this is something different.

A year ago my boyfriend, K, gave me Covid, which sparked Guillain-Barré Syndrome (GBS)—an illness with the most beautiful name that no one knows how to say. In a sudden act of betrayal, the immune system begins to eat away at the nerves, causing paralysis. There is no cure, but after an IV treatment the body slowly heals itself, recovering each nerve, one millimeter a day.  By the time I was admitted to the hospital, I couldn’t stand on my own and my face was completely paralyzed. I could only move my jaw up and down and roll my eyes. I looked like a ventriloquist’s dummy.

I was finally able to come home after a monthlong stay. I could now move the left side of my face and walk a few supervised steps with the rollator. I developed excruciating nerve pain about a week after my release. When I cried, the strong side of my face pulled my weak side over, contorting my features into a grotesque, unrecognizable expression. K was the only person I let see this. When I wasn’t in too much pain, he would take me out for fresh air in the wheelchair or with my walker so I could practice walking.

Pretty quickly, I realized I couldn’t wear my “before” clothing. My oversized Carhartt jacket and dirty sneakers used to read as cute and rustic when I was an attractive, vibrant woman. But in a frail, disabled body with a crooked face, they made me look like an addict lingering outside a methadone clinic. When I ran into familiar faces, my distorted self was met with their looks of confusion and overwhelming pity. Strangers would quickly look away in discomfort or pretend not to see me in the first place. Or maybe they really didn’t notice me at all. Before all this, I might have looked away, too.

I felt ashamed that my beauty had made me feel special in the first place.

I was not used to these looks, or used to the lack of looking. Ever since I can remember, people have told me I was beautiful. It wasn’t until I went through puberty and grew breasts—very perfect-looking breasts—that I started to believe them. I put a lot of effort into not seeming outwardly superficial and vain, while privately thinking my beauty made me special, made me a better person. 

During my freshman year of high school, I had my first real kiss. That same year, at 14, I rushed to lose my virginity: I let my crackdealing drummer boyfriend fuck me as the credits of Stigmata rolled because I was excited to get it over with. At 16, I started dating men in their twenties. I would go to bars busting out of altered t-shirts I bought in the kids’ section of Salvation Army. I began the lasting habit of walking down the New York City streets while holding the gaze of nearly every eye I felt. 

Suddenly, almost overnight, I felt the absence of all this. I didn’t feel special or better anymore. And I felt ashamed that my beauty had made me feel special in the first place. 

The first time I saw my naked body in the mirror, three weeks after my hospital stay, I was horrified. Normally 130 pounds, I was now down to 92. My ribs and collarbones were protruding. Two little toothpick legs sprouted from a mound of wild pubic hair. I was reminded of those old photos from Auschwitz. I wanted to cry, I wanted to scream “help,” but wasn’t sure to whom.  I turned around and looked at the buttcrack between two pieces of skin hanging off my back. I turned forward and looked at my flat stomach and my pronounced hip bones. Well, this part I like, I thought, which made me hate myself a little. 

A few months in, I started to get noticeably better. I was walking on my own and gaining weight, little by little. My boyfriend and I experienced a kind of intimacy not many couples get to share. As my body began to grow curves again, there seemed to be a second chance at puberty. He told me it was erotic to watch me get stronger, to watch my body fill out, my hips grow, my ass get fat. I had to relearn how to kiss; our kisses evolved over the months as my mouth found new movement. There was such devotion in his lips adapting, generously filling in the space. When we finally had sex for the first time again, it was careful and loving and busting with pent-up lust. Not only did it bring extreme pleasure to this foreign body that had been trying to escape pain for months, it felt like it erased my original virginity story, which had nothing to do with pleasure.

Part of me wonders if my relationship with K blossomed because my supply of admirers was cut off. There was no distraction. I had to be still and available with one person. Because of this, I could feel the power of that next-level intimacy. I had broken free from seeking sexual validation from every person on the street. I even felt gratitude for my fucked-up face and my illness. It led me to a place of clarity and freedom I may never have found. 

A year after the GBS, I’m back to a body that looks more like me. Although a bit thinner, I have curves and breasts. My face doctor says that recovery after a year is minimal. That my face will never look the same. I see unfamiliar lines around one side of my mouth and my neck looks stringy and tense. My features move differently, unevenly. But you can’t tell if I'm not talking or emoting, or if you’re a stranger on the street.

Mostly, I don’t look for people’s eyes anymore. I’m not sure if this is because I feel more secure or just less desired. Sometimes I think about what would have become of me if I were alone in all of this, if I had no one to be my sexual reflection. Would I have filled the space with something more? Would I have been a stronger person for it? My friends have been impressed with how well I've handled all these changes. Perhaps I had been ready to let that version of myself go even before GBS. There is sadness, there is grief, and there is fear that she will come back.