Life

Confronting My Reality – Part 2

If you haven’t already, read Part 1 of this essay for a little bit of background.

 

A few months ago, I found myself in another predicament of choosing whether to confront my reality or to ignore it. A friend suggested I read a best-selling book about a boy with an extreme craniofacial abnormality. She had been reading it with her students and thought I would appreciate the message, as it is similar to my own. I once again skirted around the idea of celebrating someone else’s uniqueness because I didn’t want to be reminded of mine. Was I worried I would have nothing in common with the main character? Or was I afraid of the similarities?

 

I finally decided to concede. The book is Wonder written by R.J. Palacio, and from the moment I began reading it I found both parallels to my youth as well as situations I thankfully dodged. Wonder details the story of Auggie Pullman, a fifth grade boy who’s extreme anomaly prevents him from leading a normal life. A story like his isn’t something the general public often hears, but in this book readers begin to understand the life of a child panged by the ignorance of strangers. Palacio breaks the book down into chapters told in the first person by various characters. Not only do we receive the personal insight of Auggie, but we also receive vantage points of his deformity from a sibling and multiple peers. This book floats on uncharted territory and offers the promise that all who flip open the cover will learn.

Despite him being a fictional fifth grade boy, I found a kindred spirit in Auggie Pullman. We feel the same; we laugh the same; we hurt the same. His anomaly may be much more severe than mine, but many of Auggie’s thoughts and reactions mirror my own. Palacio never truly discloses Auggie’s anomaly. The story focuses more about the emotions, hurdles, and experiences that Auggie faces and less about the exact medical aspects of his life. Though after some digging, I discovered that Palacio envisioned him having a severe form of Treacher Collins Syndrome coupled with another mysterious condition. Somehow, I guessed that immediately upon seeing the cover illustration, but my theory solidified as I read into the intricacies of his features. I suppose it takes one to know one!

As I read this book, I found myself chuckling at the similarities we shared and even being transported back to my own place and time. I’m an avid reader but this is the first time I ever felt a personal connection to a fictional character.

For starters, people with physical differences sense when they become the focus of attention. You’re used to your own appearance but others may not be. “But I’m kind of used to how I look by now. I know how to pretend I don’t see the faces people make” (Auggie, page 3). Often times it’s very apparent when strangers are talking about you. “There was one table of girls that I knew was whispering about me because they were talking behind their hands. Their eyes and whispers kept bouncing over to me” (Auggie, page 49). There were plenty of times I would be out shopping and noticed children staring. They would then tug on their mother’s shirt. The mother would bend down so the child could whisper something to her. Eyes would then dart in my direction and the mother would shush the child until they were out of earshot. But children, especially the little ones, are far too young to understand any better. As Auggie points out, “what’s cool about really little kids is that they don’t say stuff to hurt your feelings, even though sometimes they do say stuff that hurts your feelings. But they don’t actually know what they’re saying” (page 20).

After a while, your friends and family begin to react to those moments of disheartening ignorance while you continue to ignore the situation. After all, your loved ones don’t see you the way strangers do. “And since they’ve always known me the way I am, they’re used to me” (Auggie, page 4). One of my best childhood friends often remarks that she would stare down anyone whose gaze she noticed lingered too long. To my friends and family, I was simply Kristin and anyone who was caught thinking otherwise would enter into a staring showdown, maybe even receive a few choice words. I shutter to think which unsuspecting children bore the brunt of my Grandma’s renowned “what do you think you’re doing” scowl. In Auggie’s case, his sister was his dominant protector. “She can get really annoyed with people who do something rude” (Auggie, page 3).

Over time, my senses have become heightened to the actions and reactions of others. Not only can I feel when I have become the focus of unwanted attention, but I can also predict a specific question about to be asked. It usually starts with “can I ask you a question?” and is followed by a version of ”what’s the deal with your face?” (page 28). Auggie demonstrates that exact same intuition. “’Hey. Auggie, can I ask you a question?” “Yea,” he said, like he knew exactly what I wanted to ask”’ (page 129). I personally never mind the question. I would rather someone ask and know the details than assume something that isn’t true, such as the common misconception of being in an accident or burned. “I mean were you in a fire or something?” (page 28).

Palacio describes Auggie’s features as looking “like they’ve been melted, like the drippings on a candle.” These melting features earned him cruel nicknames from kids such as Lizard-Face and Freddy Kruger. This tormenting led Auggie to want to hide his face. He found solace in wearing an astronaut helmet given to him by his sister’s best friend. Whenever he wore the helmet, no one focused on his face; no one could see it. This crutch allowed Auggie to feel like a normal boy and for a period of time, he wore it whenever he left the house.

I recently realized that my lifeline to normalcy was the ability to hide my hearing aid. I’ve had my favorite aid my entire life. As my head grew, it molded around the band of the hearing aid, which allowed the band to fit flush against my skull. When I wore my hair down, the hearing aid was barely noticeable. A couple months ago, I sent two out of my three hearing aids to the manufacturer for repairs. I had asked for them to size the band of one aid so it matched the shape of my favorite. When I received them back, I noticed that both bands had been changed. My favorite aid no longer fit precisely to the shape of my head. Thirty-two years of molding had been tossed away. I was instantaneously crushed. I could no longer hide the hearing aid even with my hair down because the band now rose a quarter of an inch above my skull.

In truth, a hearing aid in itself acts as my lifeline. When one fits just perfectly, the sound comes across as exquisitely clear. When it doesn’t, I struggle to decipher words from muffled noises. Only one of my hearing aids creates the perfect sound. Luckily, the changing of the band did not affect the clear quality provided by my favorite aid. Whenever I switch from a different hearing aid back to my favorite, the feeling is as Auggie describes: “It was like when you’re in a room where one of the lightbulbs on the ceiling isn’t working, but you don’t realize how dark it is until someone changes the lightbulb, and then you’re like, woah, it’s bright in here!” (Auggie,page 214). It’s amazing the difference one component can make. Without a hearing aid at all, I feel “miles under the earth” (Auggie, page 271).

My most difficult correlation to Auggie is the fact that both of us underwent necessary jaw surgeries to correct the underdevelopment of those facial bones. These were the operations that caused me the most physical pain and left behind the worst memories. When I was fourteen, my maxilla and mandible were shifted forward for better alignment and to open my airway for less laborious breathing. The surgeon also grafted a piece of hipbone onto my jawbone to make it more pronounced of a feature. When I was sixteen, my doctor broke my jawbones and inserted a contraption that lengthened the jaw with each painstaking turn of the screws. After both of these surgeries, my mouth was wired shut by thick elastics that I could only remove once daily for a meal of soft mush. While Palacio doesn’t go into much detail, Auggie also experienced something similar. “I had my jaw surgery, when I couldn’t talk because my mouth was wired shut. They had taken a piece of bone from my hip bone to insert it into my chin to make it look more normal, so I was hurting a lot in a lot of different places” (Auggie, page 54).

If you’ve lived a similar life to either Auggie or I, you’ll realize there will always be moments when the strength you carry melts away leaving behind a puddle of self-pity. No matter how many times your mother proclaims your beauty, you can’t shake the feeling of despair. In those moments, you realize a piece of you will be forever scarred. Despite what your loved ones say, they cannot know what it’s like to feel as if you’ll never be 100% free from your anomaly. “She said soft words that I know were meant to help me, but words can’t change my face” (Auggie speaking of his mom, page 59). You can have any number of surgeries but there will always be something slightly off, if not physically then emotionally. Even as happy as I am with myself now, I can’t avoid hiding the minor TCS characteristics that will never be corrected. As long as I expose my hearing aid, malformed ears and scars, I’ll be subjected to those inquisitive glances.

These constant lingering emotions cause some people with craniofacial deformities to shun the idea of ever having children. I understand this, as does Auggie. “If I have children, there’s a one-in-two chance that I will pass on the defective gene to them” (Auggie, page 105). My Treacher Collins was caused by a random genetic mutation, meaning no one in my family carried the gene. Now that I am a carrier, there is a 50% chance I will pass this mutated gene on to my children. Since the spectrum of the syndrome spreads from mild to extreme, there is no telling the cards my children would be dealt. I don’t regret my life one bit; however, I do not want to intentionally bring children into this world knowing there is a probability of them spending their childhoods in and out of hospitals. I will gladly spare someone those traumas and not have kids. “There are countless people under words like “germline mosacism,” “chromosome rearrangement,” or “delayed mutation.” Countless babies who’ll never be born, like mine” (Auggie, page 105).

The most significant way in which Auggie and I connect is that we see ourselves as ordinary people. “I think the only person in the world who realizes how ordinary I am is me” (Auggie, page 3). We don’t feel extra special or different or brave. This is life. We learn to survive with what we were handed. My life isn’t nor ever was extraordinary. I was an ordinary girl living an ordinary life aside from the fact that I went through surgical procedures every so often. I never saw myself as surviving on more courage or strength than the average kid. Neither does Auggie. “To me, though, I’m just me. An ordinary kid” (Auggie, page 306).

I may have hesitated to confront my reality but in the end, I was right on both counts. Auggie did experience more pain and torment than I ever had. While I couldn’t relate to that, I related more than I ever thought I would to his emotions.

Palacio does a fantastic job conveying the thoughts of a child with a facial deformity, especially since she does not have nor does she know anyone who has his anomaly. However, the concise underlying message of this story reaches beyond this single situation. Choose kindness. This reverberates across all ages.

I highly suggest you pick up a copy of Wonder and find out the whole story of this unique fifth grader. There’s so much more to Auggie’s story than the few commonalities I shared.

Thank you, Amy, for your persistence in insisting I read this book! And thank you, R.J. Palacio, for writing the story I never could. For teachers like Amy, it has become a successful tool in promoting kindness and acceptance. For children growing up with facial abnormalities (or any uniqueness), it has become their best voice for spreading the message of acceptance.

IMG_2670
Go…read it!

 

Have courage and be kind. – Cinderella, 2015

Are you interested in learning more about R.J. Palacio and Wonder?  Check out her webpage: http://rjpalacio.com/

Advertisements