As a child, she would cry when she saw pictures of herself. She’d beg her doctors, “Fix me,”335 as she described in a Narratively essay. When she was interviewed by French journalists as a little girl and they compared her face to a work by Picasso, she tore the magazine to shreds.

But when doctors did “fix her,” so to speak—when they performed the extensive surgeries that added cheekbones, changed her nose, and moved her jaw forward—it wasn’t always the transformation she was hoping for.

In seventh grade, she and her twin sister, who also has Crouzon, had surgeries that completely altered their appearance. When she returned to school, people kept asking Ariel what happened to her. Some asked if she’d been in a car accident—or worse. “You look like a bomb exploded on your face,” one boy said. When she was five, another surgery made Ariel ask her mother for her “old face back.”

Today, Ariel’s view of her condition is somewhat mixed. She says she wouldn’t want to have been born “normal,” given the chance. But she also wouldn’t wish the painful experiences that often come with Crouzon on anyone.

Many transgender women just want to blend, or to not be perceivable as transgender. At the very least, many wish to be seen and treated as cis women would. But, Jess Herbst admits, “I’ll really never have that, because I’m always going to be that transgender person.” Being one of the only trans people in her area, she sometimes feels like the sign at the mall that lays out a map of all the stores. When people wonder “Where’s Sears?,” they can come ask Jess.

People ask her if she has a penis, and if so, if she’s getting rid of it; they ask her if her breasts and hair are real; if she likes men or women romantically.

“I don’t get upset,” she said. “And the more people ask me the questions that other trans people do not want to answer means [other trans people] don’t get asked those questions.”

Her attitude surprised me. I assumed that if you were different, you wouldn’t want people constantly pointing it out.

“It’s just at some point when you wake up and there’s four news trucks in that circle driveway,” she said, gesturing out her window, and “the next thing you know you’re on the BBC and you’re on the radio in Ireland, Australia, Spain.…It was kind of like there’s no hiding, there’s no pretending that people don’t know. And I might as well make the best of it I can for myself and for the community.”