Book Review: Midnight Sun by Trish Cook (soon to be a major motion picture)
The book Midnight Sun is told from the perspective of a girl named Katie who has Xeroderma Pigmentosum (XP). But, the story is greatly exaggerated. Katie says that even if the sun touches her skin, she will die. So she stays locked inside, only going out at night. Here are some parts of the book that I, as person who has XP, found amusing and disturbing.
Describing XP, Katie says, “If sunlight so much as glances off my skin, I’ll get skin cancer, and my body can’t repair the damage so my brain starts to fail.” That’s not how XP works. There are several different forms of XP. Some people do get skin cancer, but it doesn’t happen that quickly. Other people have neurological issues, but it’s not related to sunlight.
In her mind, Katie finds herself relating to the Greek goddess Cassiopeia: “According to Greek mythology, she’s chained to her throne, forever stuck there as punishment for her boastfulness and vanity. I wonder if sometimes I did something to deserve XP, something terrible that requires me to do penance in my house and my room all day, every day, until the sun sets.” I can understand how Katie feels that way sometimes. Sometimes I also feel like I’m stuck to my disability. Like I can’t get away from it. But, I think Katie could have found a better way to meet her needs. She could have found a way to live with her disability rather than being trapped by it.
Even the doctor in the book doesn’t get XP right. She says that when Katie does get barely touched by sunlight, it might be a “triggering event” that leads to brain damage and even death. I think if kids with XP were to read that, they might feel that they didn’t have a life anymore. They might feel like they have no hope. So I want to tell people that there is hope! There is no such thing as a “triggering event” that turns XP instantly deadly, so you can live your life! What happens to Katie doesn’t happen to real people with XP.
A lot of the story is about Katie’s relationship with her first love, Charlie. She doesn’t want to tell him that she has the disease. She thinks to herself, “Charlie Reed already has enough on his plate without adding me and my weirdo disease to it.” She literally has chances to tell him about XP at least three times, but she keeps it a secret. I don’t really understand that. I think you should give people a chance, because they might surprise you. Having XP doesn’t make you alone in the world. But in the story, Katie makes herself alone.
Finally, after having a crisis, Katie finds that she does have friends, and Charlie loves her even after he finds out about XP. It does bug me that in the end of the story, Charlie “saves” her from XP by showing her all the things she has been “missing” by staying indoors. And then she dies anyway. It’s like life’s not worth living if you have XP. That’s just not true.
So here are some facts about XP from someone who has it: We do go outside. It’s true we take precautions to avoid sun damage. We can wear clothes with special UV-blocking fabric. We cover as much of our bodies as we can. We also use sunscreen–a LOT of sunscreen. People who are very sensitive to the sun also wear a hood or face covering to protect themselves. It can be a hassle, but it keeps us sun safe. Most people with the type of XP Katie has do go to school, have friends, and enjoy all different kinds of activities during the day like anybody else. We just have to be a more careful. XP is a serious disease, but that doesn’t mean our lives are tragic.
If I could say one thing to the writer of the book, and the people making the movie, I would say, get your facts straight! Try to consider how real people with XP live and feel, and how this movie might affect them. Don’t portray us as just a disease, with death as the only option to escape. We are people, we have real lives, and we are worth getting to know.
If you want to learn more about XP, there are many resources, like the Xeroderma Pigmentosum Family Support Group (xpfamilysupport.org).
Originally posted at https://titaniumamyblog.wordpress.com/