I think it was a BookRiot email that alerted me to the existence of A Face for Picasso: Coming of Age with Crouzon Syndrome by Ariel Henley (Farrar, Straus, and Giroux, 2021). The description of the memoir piqued my interest; I haven’t read all that much by or about people born with facial differences, so I was intrigued from the start, and, luckily, my library had a copy on the shelf.
Ariel and her sister Zan were born seemingly ‘normal,’ but within a few months, it became obvious that something was drastically wrong. Many doctor appointments later, the twins were diagnosed with Crouzon syndrome, a medical condition that’s usually genetic, but in the twins’ case, it’s merely a fluke of nature. This syndrome causes the skull to fuse together prematurely, leaving the brain with no room to grow. Surgery is needed to allow for space, and constant reshaping of the face is necessary. People affected have noticeable facial differences, including bulging and/or wide-spaced eyes and a protruding chin.
Ariel and her sister grew up knowing they were different. They were stared at constantly in public and treated terribly by their classmates and teachers. Their lives were marked by constant painful surgeries (over sixty of them), and middle school began a whole new level of hell for them. They became constant targets for their classmates; certain teachers actively made their lives more difficult; even their friends’ parents and coaches worked hard to make them miserable, simply because they looked different. And all this time, both girls were struggling with pain, constant medical appointments, and all the heavy emotions that come with being a young child and dealing with hardcore medical issues.
Ariel and Zan struggle. Ariel lashes out; she develops bulimia and PTSD from both the medical problems and the emotional difficulties. But along the way, she begins to learn who she is underneath it all, what she’s capable of, and she ultimately finds her voice.
Whew, this is a painful memoir. My heart broke again and again for Ariel and her sister, for the necessary medical torture they were put through, for the absolutely unnecessary mental and emotional torture the people around them put them through. I hope every last asshole who treated them poorly recognizes themselves in this story and feels well-deserved shame every day for the rest of their lives. Who acts like that???
I hadn’t read anything like this before, so I’m grateful to Ariel for being able to open up and share what living with Crouzon syndrome has been like. I had no idea what such intensive surgeries were like, and what the recovery period would be like. I’m so sorry that anyone has to go through that, especially children. I hope that hospitals and their social work departments will take note of this book and maybe develop better programs to help support families and patients going through these procedures, and living with these medically intense conditions.
Incredible memoir by an incredible young lady who has had to fight so much harder for any bit of normalcy that anyone should.
She's probably at the library... 