Ariel is the author of A Face For Picasso, her memoir about her journey with Crouzon syndrome, a condition that meant that her (and her twin's) skull bones were permanently fused, leaving no space for growth of facial organs. She and her sister Zan had to have multiple surgeries on their face, which resulted in asymmetrical faces and slanted eyes. More than the physical pain of the procedures, the emotional agony of rude remarks and being left out hurt more. In her debut, Henley reflects on her childhood and shares with us the unspoken topics of facial difference and symmetry.
I was named after Ariel in The Little Mermaid, so I naturally felt like she was my favorite. I loved that Ariel was curious and adventurous, and wasn’t afraid to risk everything to go her own way. (I worry about her willingness to give away her voice in exchange for legs all to please a man, but I digress…) I was very spunky as a child. I was opinionated and stubborn, and once I made my mind up, that was it. So personality wise, it felt special to feel so connected to a character, especially the one I was named after. But though I was named after a Disney princess, I didn’t resemble her at all. I had brown hair, brown eyes, and an asymmetrical face. It was hard not seeing myself in the character physically, because there was no representation. There were no princesses with a craniofacial condition or facial difference, and so on some level, I internalized the idea that there was something wrong with me from an early age.
What fantasies did you have as a child about being an adult?
I thought I would grow up and have symmetrical facial features like my parents and my siblings. I believed that I’d finish my surgeries and look just like the rest of my family.
Was there a memoir you loved and kept in mind while writing yours?
Autobiography of a Face by Lucy Grealy, Life with Picasso by Francoise Gilot, and Say Hello by Carly Findlay are a few memoirs I love and inspired me to continue working on telling my own story.
You’ve wanted to write this book since you were twelve. When did you start working on it? Did you write down your memories to preserve them for this book?
I have wanted to write this book since I was 12 and I really started working on it at that age. I kept journals and documented as much as I could because I knew I wanted to remember things as they were happening. As I got older, I would write down thoughts, ideas, and memories as they came to me. Sometimes it was just a sentence here and there, and other times a full paragraph or even multiple pages. I wrote on napkins, receipts, and in the notes app on my phone. I was always thinking about my book and creating content I knew I wanted to include in it. When I got a book deal, I compiled a lot of the work I’d already written.
Initially, you wanted to be a doctor. When did you decide to do a BA in English and Political Science and why? Do you still wish you could have gone for medical?
I did want to be a doctor! I specifically thought I wanted to be an anesthesiologist, because I loved mine so much. But it was ultimately not my calling. I don’t think working in a surgical setting would have been good for me, because it still triggers so many memories for me. I would have a hard time focusing on patient care if I’m in my own head trying to calm myself down. Hah! I think going into the medical field is an incredible profession but I think I ultimately made the right decision in pursuing a career in writing. I also went back to school a few years ago and got my Master’s in Education. I get to use my love of writing and learning and history every day in my work. I’m so lucky.
How did your family and close friends react when you first announced that you started working on your memoir?
My family and friends have been super supportive throughout the entire process. I think some newer friends were surprised when I said I was writing a memoir, because I’m only 30 years old. It was kind of like, “what do you have to write a memoir about?” Haha. But everyone got on board really quickly and have honestly been incredible. My parents and siblings have known about my plan to write this book since I was 12, and they’ve always encouraged me to keep writing and sharing my story. It has meant so much to have their love and support as this book makes its way out into the world.
How do you feel as a published author after so long?
Being a published author is an incredible feeling! I keep having to remind myself that this is real life and not just a dream. It blows my mind to know that people with facial differences — or people wanting to learn more about facial differences — can now walk into a bookstore and find my story. That wasn’t an option for me growing up — there weren’t any stories I related to! So it feels very special.
How did puberty and adolescence affect the way you look at yourself and the world?
I had a lot of internalized shame about my appearance. I thought everything about myself was wrong. At times, I believed I was less than and subhuman. The more work I did on accepting myself, the less I had these thoughts and feelings. My upbringing taught me that there is more to a person than what they look like. It also taught me to not take other people’s actions of my own value and worth as a person. If someone is unkind, that is a reflection of their shortcomings, not mine. I’ve learned that there are mean people out there, but there’s also a lot of wonderful and kind people as well. I try to focus on that.
You and Zan had to face a lot of discrimination and bullying at school. Do you still face the same stares and whispers? How do you deal with this as adults?
I do still get stared at when I’m in public and sometimes people do make rude and insulting comments, but I try to ignore it. If I’m feeling particularly sassy, I might call it out. But I will usually try to remove myself from the situation or just ignore it.
Which part of the book was hardest to write? How long did it take you to write it?
This is a hard question! There were a lot of areas that were difficult for me to write, but I think the times when I took out my anger on my family was really difficult, because it broke my heart. I also struggled with writing about Zan going through everything, because it wasn’t fun to think about. I tried to just write about hard things in short bursts and then piece them together.
As a child, you intentionally mocked yourself before others did, desperate to avoid negative comments and make friends. How did these episodes affect you afterwards?
It left me with a lot of shame. It’s hard to think back to how sad I was at various times throughout my life.
What memories do you most cherish from writing your book?
I have so many incredible memories from childhood. All of my adventures with Zan and our friends who lived next door were the highlight of my childhood. Even funny memories of being in the hospital and trying to find the humor in navigating recovery holds a special place in my heart.
If you could have a writer's pseudonym, what would it be?
I would probably just use my middle name, Tyler.
Do you plan on writing more books in the future?
Yes! I don’t know that I will do another memoir, but I will definitely continue writing stories with people with facial differences and craniofacial conditions. I still feel called to help normalize faces like mine.
What is your life motto?
Nothing that’s meant for me will miss me.
Finally, is there anything you’d like to share with your readers?
I just want to say thank you so much for reading A Face for Picasso and for taking the time to learn about Crouzon syndrome and facial difference.
If you believe in equity, curbing discrimination, and educating yourself about the subjectivity of beauty, you should definitely order A Face for Picasso ASAP. You can find Ariel on Instagram, Twitter, and her website. Thank you for reading this, and until next time, Keep Reading!
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