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A Face for Picasso: Coming of Age with Crouzon Syndrome

door Ariel Henley

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672393,704 (3.69)4
"A YA nonfiction story about Ariel and her twin sister's experience living with Crouzon Syndrome"-- At only eight months old, identical twin sisters Ariel and Zan were diagnosed with Crouzon syndrome, a rare condition where the bones in the head fuse prematurely. They were the first twins known to survive the disease. They endured numerous appearance-altering procedures as they grew up. Surgeons would break the bones in their heads and faces to make room for their growing organs. While the physical aspect of their condition was painful, it was nothing compared to the emotional toll of navigating life with a facial disfigurement. Here Ariel explores beauty, identity, resilience-- and the strength it takes to put your life, and yourself, back together time and time again. -- adapted from jacke… (meer)
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A memoir that recounts the author's childhood through her college years as she and her twin sister struggled through myriad surgeries to 'correct' their faces, which were misshapen as a result of being born with Crouzon syndrome.

I generally enjoy this type of middle grade/teen (this one's more on the teen side) book for how they expose readers to lives that are very likely different from their own - and for how they represent other readers who can find themselves in their pages. This one, though, felt a little counterproductive on that front. I hesitate to criticize memoirs on any level, because I think their authors are a particular kind of brave and should be praised for having the stamina and courage to open up their lives to others in such a way. So I don't say this lightly and I'm also not claiming that there isn't value in the book in a lot of respects. It just didn't quite work for me overall. Henley seems to focus too heavily on her struggles for it to be an inspirational story; I was left wondering who this story was intended for. Also, the parallels Henley tries to draw between herself and Picasso are strained and in places trite, and in the end it reads like a forced comparison in a first year composition paper. ( )
  electrascaife | Jan 4, 2023 |
Author Ariel Henley and her twin sister Zan were born with Cruzon syndrome, a genetic condition that results in unusual, distinctive facial features. As children the two girls were teased mercilessly by their peers and subjected to painful surgeries to "normalize" their appearance. Although they were blessed with a loving family as well as access to therapists and world-class plastic surgeons, no one ever seemed to tell Ariel and Zan that they were enough the way they were. As a result, the sisters ended up being very angry and crying a lot, seemingly on every page of this memoir. Oddly, they never meet anyone else with issues similar to their own.

This 378 pages of raw memoir could have used some judicious trimming. Some plot points are over-indulged (such as an endless dwelling on the politics of 7th grade cheerleading), while other, more important issues (such as the author's eating disorder) are given short shrift. Still, I liked the author's use of Picasso's biography, especially his treatment of women, to illuminate her own.

Memoirs by people with craniofacial issues are few and far between. This one, although flawed, deserves to be read by those interested in the topic. ( )
  akblanchard | Jan 1, 2022 |
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"A YA nonfiction story about Ariel and her twin sister's experience living with Crouzon Syndrome"-- At only eight months old, identical twin sisters Ariel and Zan were diagnosed with Crouzon syndrome, a rare condition where the bones in the head fuse prematurely. They were the first twins known to survive the disease. They endured numerous appearance-altering procedures as they grew up. Surgeons would break the bones in their heads and faces to make room for their growing organs. While the physical aspect of their condition was painful, it was nothing compared to the emotional toll of navigating life with a facial disfigurement. Here Ariel explores beauty, identity, resilience-- and the strength it takes to put your life, and yourself, back together time and time again. -- adapted from jacke

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