This time, I chose.

I’m having a surgery. I don’t know what number it is out of what I believe are over a dozen since I was 5. And I haven’t had one in almost 8 years. It’s the longest time I’ve had between each.

Those before this one were 95% not by choice except the one time I threw in a rhinoplasty since I was already going under for other reasons. My nose had always bothered me so why not. It was nothing in comparison.

Each surgery was doctor recommended and parent motivated. I was strung along this “adventure” as I struggled to grapple with why other kids didn’t have to miss school, have tutors, or a round-the-clock nanny.

This stringing along often made me feel like an object that needed fixing. Like one of those dolls or handbags that comes out of a factory with a production error. Except I’m a person and you can’t return me and get a refund. As cynical as that sounds, it’s the best way I can describe how I often felt.

Since what I had thought was my last surgery, a lot has happened. All those feelings of helplessness and resentment finally caught up with me and I began to drown in everything that I had once ignored. It’s as if my mind and body had gone into survival mode throughout my childhood in order to be able to deal with what was happening. And once it came to a halt – the reality of it all finally kicked in.

After about 15 years of consecutive surgeries, it took me 7 years to process what had happened and come to terms with who I was. It’s year 8 and I’m putting myself through it again.

I had just moved back to Mexico and gained a little weight after quitting smoking the past year. I noticed that the side of my face with the production error was feeling a little heavy. I notice that my left cheek looked like it was slightly hanging. That’s when I realized the reality of my future.

With no real bone structure on the left side of my face and nature doing its one job, I came to realize that gravity would not be so kind to me. The aging process can already be somewhat daunting but to think of one side of my face melting off more so than the other just freaked me the hell out.

While I had taken so long to get used to my face, it suddenly dawned on me that it wasn’t over. Now, my fears aren’t about surgery itself but what’s to come if I don’t get ahead of the curve. But there is also a new fear. One that I hadn’t felt before.

I used to worry about what would come out of the OR after the procedures. But now I worry how my head will react.

After 7 years of struggling with myself and then finally coming out for some air, I found myself quickly deciding what I wanted next. And while it is something I want, there is a tremendous fear that I’ll go back to that place where looking in the mirror only made me angry.

My mother keeps trying to remind me that I should keep my expectations in check. After the first consultation with this new doctor, I wasn’t very pleased by his reluctance to say much. Logically I understand why, but emotionally I was upset and disappointed. It was the first time we met a doctor, sat in his consultation room, and explained what I wanted because I wanted it.

By the second appointment, without my prompt, he explained my fears about gravity and nature taking its toll. He explained the possibilities of what could be done and I left thinking, “I knew it.”

Pleased with what he had explained, all that was left to do was wait and waiting is no easier than the rest of it.

A bit over a month a go I had a couple of strange weeks where I felt myself reverting back to old emotions and habits. I found myself drinking a bit too much and stealing cigarettes from family members. But I’m not 20 anymore. While I have started smoking again, I got myself a new therapist and decided that if I was going to this I wasn’t going to let my anxiety and PTSD get in the way of me being okay.

7 years of experience with depression and PTSD can come with learning a lot about yourself. It helps you know beforehand when you might trip again. It helps you know that you need to put your hands in front of you before you land. It helps you prevent any harmful damage because: 1) You know what that looks like, and 2) You don’t want it anymore.

As of now, the surgery is scheduled. The waiting will soon end and I will have to deal with whatever happens when it does. I’m excited, nervous, and anxious all at the same time. I’ve never had a surgery that directly deals with what I was born with because I wanted it. This time, I chose.

While I still have that voice in my head that fears what may happen at the end of this month, I am using every tool, every experience, and every ounce of self restraint to stay as calm as I can. Because if there is one thing I have learned from all of this, it’s that I do have a choice.

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Wonder: a movie critique

I knew I would eventually watch it but something told me from the start that I wouldn’t like it. Details like the name of the film, the trailers, and general tone of it, let me know that this was a movie I would struggle to watch and I would not be comfortable with how the material would be presented. And bingo, I was correct.

Originally a fictional novel (I haven’t read) by someone who doesn’t have direct experience with the topic, Wonder is a film about a boy born with Treacher Collin’s syndrome. It is a craniofacial deformity that affects the middle part of the facial bones, noticeably the eyes and cheek bones and/or more.  The author of the book met a boy with the syndrome and decided to write an inspirational teen novel.

Similarly, I was born with a deformity that is often compared to Treacher’s except it affects one side of the face causing a baby to be born with a lack skeletal structure on one side rather than the middle of the face, affecting the ear, cheek, and jaw of the side.

So, you can imagine that my watching this movie came with some personal baggage to deal with.

There’s no specific critique I have about it as a film. I actually found it quite boring and stale. It follows typical tropes of teen movies and has no surprising twists. It is your typical feel good inspirational movie. And that is the problem.

Activist Stella Young, who passed away in 2012, coined the term “Inspirational Porn”. After I watched the movie, I googled it and learned the term  immediately identifying what I felt having seen the movie.

The movie quickly describes what young Auggie, the main character, had to go through medically at that point of his life. He is going to school for the first time and will experience what confronting other kids feels like. It then goes into some back stories of some of the other characters. The sister’s role and her point of view made sense to me. It was the only honest part I found as she finds herself struggling to find her own place in the world while her brother has been generally the center of it. But the general gist of the movie is a small moment in the main character’s life in dealing with others as they perceive him.

For those of us that grew up with a deformity, or disability, the way we move about the world takes two forms. One, how you perceive yourself and second, how others treat you as they perceive you. But how we deal with how others perceive us is the important part. It is complex and difficult. One aspect of that is an uncomfortable reality that only the affected, and maybe some around them, understand.

When some of us talk about our struggles with having these deformities, our main goal is not to create sympathy around us, but rather to show that struggle and pain is real and faking otherwise is dishonest.

We did not choose to have these things happen to us. We did not choose to have to deal with surgery, bullying, name calling or the inevitable stares. We are not exceptional because biology has flaws. We, like everybody else, just want to be exceptional by who we are, not what we are.

At the end of the movie, Auggie receives an award for having affected other kids behaviour. Not necessarily for saying something or doing anything but simply for having a face that makes others question their own behaviour. It ends up being a reflection about how people without deformities should treat those with them.

This, to me and others, comes off as society’s own pat on the back for being able to be “good” people for treating those different from them with respect. It’s actually quite insulting. As Young put it, “I am not your inspiration, thank you very much.”

While I could easily say,  “It’s just a nice little story”, these depictions of what I’ve been through are not common in film. When the opportunity to tell a story that I actually can relate to is cut up and portrayed like a nice inspirational story for others, it’s difficult to not be offended when the reality of the situation is much more painful and complicated. It’s difficult to give society a pat on the back for it’s good behaviour when it is us that are left to deal with the struggle and built up baggage that comes with having our faces and bodies.

Young’s “Inspirational Porn” makes a point to say that putting these emotional responses upon those that are different from the norm sets a sort of standard to live up to. Standards I myself struggled with. It’s a nice story when your 9 and all you want is to be accepted. You’re given labels like “strong” and “special”. We’re given character traits which we didn’t work for but were bestowed upon us simply for having to deal with something others hadn’t to. But the things is, life doesn’t end at the end credits. It continues.

What happens after the movie is over? When you start dating, go to job interviews; have to deal with the normal stuff everyone else deals with on top of this other thing that doesn’t go away. I myself only began to seriously struggle with dealing with what I’d been through when I was starting college. And none of it is fit for a feel-good teen movie. That is the reality.

Living with a deformity is not just one stage of life that you overcome and move on from. It is like living with a pebble in your shoe. You get used to it but it’s still poking at you. Sometimes great things happen and you forget it’s there and sometimes it’s all you think about. The pain, the struggle, and the knowing that the pebble is not coming out. We are not society’s token inspirational friend. We are not like this so society can decide to be good. We are not like this so society can take our stories, patch them up, and sell them as feel-good anecdotes for a rainy day. We simply are like this and all we ask for is that society not use us as a way of making itself feel better for accepting us. It comes off as, “I’m so lucky I’m not them but I’m so good for accepting them.” Again, “I’m not your inspiration, thank you very much.”