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.

My Great Conflict

When I was 15, I decided I wanted a tattoo. I didn’t know what to get. I knew I didn’t want something I could possibly get sick of. I didn’t want something cheesy, something devoid of meaning, nor something that could eventually lose all meaning. Some ten years later, it came to me.

I’ve grown up with what I call “my great conflict”. A conflict between what is my physical self and what you could describe as my character or personality. Whenever I went to my therapist, whenever I had a moment alone late at night in my bedroom, or after long evenings whenever I drank so much wine I lost all inhibitions, I would ask myself, “Who would you have been with a different body?” I would then often cry, belittle and blame myself for feeling so pathetic.

I wouldn’t be surprised to find that this is not an unusual question or situation. I would bet that many have asked themselves a similar question. Who would I be if I could hear; if I could walk, If I could see, if I could lose weight, if I were taller, shorter, if I were a man, if I were a woman, if I had darker skin or lighter skin? So many things we are spectacular at being displeased with.

In my experience, this question has come up as a way of often rejecting who I am because of a physical attribute I so whole heartedly refuse to accept as part of me. It has meant questioning the strength of my character which would often seem to balance delicately on the fact that something had happened to me which was out of my control.

Am I me because my home life informed my behaviour and genetics predisposed me to have certain personality traits? Or am I me because these personal experiences I dislike and am tormented by, molded me into behaving in certain ways I struggle to come to terms with?

My former therapist, I believe like any other therapist, would say I was a mix of both. But the thing is, there was a lot of myself that I simply didn’t like which then prompted the question. I was so angry at what I hadn’t had control over that I therefore relinquished power of the one thing I actually did have control over, my choices. For the longest time I have been living with that oxymoron.

I quite often did things I knew I wasn’t pleased with. Things that put me in danger and hurt those around me. Things that I knew I would have to carry with me for the rest of my life. Things that allowed me to indulge in the anger I was experiencing over the one thing I felt I had been cheated with, my body.

Instead of dealing with what I was feeling, I decided that I was better off throwing my hands up in the air than actually working on what was really going on. Therefore my body was one thing, my mind was another. My body was an object and my principals, thoughts, and beliefs were something else entirely and I became really good at tricking myself into believing  I was separating them both.

There was a certain pride that came with feeling like I was able to detach myself in that way. It made me feel superior to all the other silly people that cling to their body as if their persons were based on what I considered to be the frailty of something that will eventually cease to exist. No. I was above the silliness of the physical world. I was my convictions and principles. I was what I spoke up about and defended and studied. I was not a mere mortal. I knew my body was a temporary vessel for what was the greater goal, leaving a mark that would live past the working brain and beating heart.

This duality became a coping mechanism. It became a way of detaching from the physical world and letting me get lost from the reality I was trying so hard to get away from. Like a drug addict, I needed ways of crawling out of my skin so I could forget that I actually couldn’t get away from who I was no matter how hard I tried.

More therapy, more crying, more yelling, a not so nice boyfriend, and long discussions with friends and family have ensued. And a tattoo. A circle on my ankle that is half filled and half unfilled. Half filled with everything my body had been through and half unfilled with everything I’d thought about the world and my place in it. The circle was my long life struggle to accept that I was one whole piece and I had no choice but to accept it no matter how many times I tried to get around the subject.

The tattoo was not about the end to my great conflict. It served as a self admittance that the conflict was even there to begin with. It served as a way of owning up to what I had been through, what I had put myself through, and what I was working towards. It continues to be a symbol of all of that as I keep working to make sure that the circle remains a circle.

For now, all I can say is that: while I wish much of what is real, wasn’t; I accept that it is and I am only a mere mortal.

 

 

 

 

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.”

Hablando de Apariencias

 

Este video lo grabe antes de mi último post. Quería explorar lo que sería hacer un vlog, pero al momento de prender la cámara me tuve que detener a mí misma. Cada vez que he tratado de hacer un proyecto donde me grabo a mí misma, no lo hago, termino en lágrimas. Se me olvida que no me veo como yo pienso que me veo y ese engaño puede ser doloroso. Es por eso que hice este video como manera de enfrentar ese miedo.

(Cabe decir hay muchísimos bloggeros famosos que te van a decir como deberías de sentirte o que hacer para vivir tu vida a como los demás esperan que lo hagas, no hagan caso. La vida es complicada, nadie saben que onda, y todos tratamos de hacer lo mejor que podemos)

What was and what is.

I’ve gone awol for the past several months. I’ve updated the look of this blog. Give it a bit more personality. Try this again.

There’s something about change that makes me uneasy. It makes me stop myself from thinking about what is going on around me. It’s a self-defense mechanism, you see. If I stop to think about it, I may jump to conclusions about how I may or may not feel, allowing myself to indulge in passing emotions. I rather not.

I rather keep moving until the sequences of my day to day predetermine how I will be feeling. It helps me keep it together while I figure out what exactly I am doing. I also know that’s bullshit. I don’t know what it says about me but I also don’t really care, to be quite frank.

As long as the wheels keep turning and you continue to find the necessary amount of grease to keep them going. Blah, blah, blah.

I’ve changed homes, my living situation, the environment and the context I found myself in. It’s been okay so far. Some things I’m very excited about. Others, I just want to slap my forehead with my open palm and just close my eyes. It’s like I’ve come home and yet I don’t understand anything about this strange land I’ve arrived to.

I’m from this place I’ve returned to, yet I feel like a visitor. A foreigner that knows too much about the place they are visiting but not enough that they can pass for a local.

It’s not that I’m closed off to their ways, it’s that I just don’t understand them. You become so use to doing things a certain way, years of having adapted to one thing in one place, that realizing you have to rearrange all of that is no easy task. Not only that, you actually really liked the way things were.

Oh well. I’ll just have to remember to always make room for what was.

New York, thank you.

About 5 years ago I was at a dive bar with a friend who has having some personal struggles. She was going through something that not only did I relate to; I’d been through the same more than once.  She vented with me about a city that offers every opportunity to make every life experience much harder than it needs to be. We fantasized about what it would have been like to have never left home. To stay where it was familiar. Where there was unconditional support and the future felt somewhat drafted. We were complaining about living in New York City.

“New York is a place that eats you up and spits you out, over and over and over again.” My friend said.

“Yes”, I agreed.

I took a moment from our conversation and stared at the bar.

“Think of it this way,” I said. “Some have the choice between a bottle of whiskey and a bottle of vodka. We have an entire bar. It’s better because there are more options. But it’s also worse because there’s more risk. You may get stuck with a bad cocktail”

As sophisticated and classy as my analogy was, it stuck with me. From then on, I would need to remember those words now and again. People always complain about how difficult it is to live in New York; but this was something else.

It will be 8 years this July since I first moved to NYC. July will also be the month I move back home.

When you’ve moved to NYC from elsewhere, people always want to put an expiration date on your stay. They want to decide if you were made to live in NY forever or if you’re a passing tourist who got distracted by something shiny for a year or two. I decided a long time ago I wasn’t going to establish a timeline. How could I?

I was 19 years old when I first arrived. I was shy, innocent, wide-eyed and delusional about what my experience in New York would be. I’m 27 years old now and my time in New York is not explained by school, a job, a person, an age, or a phase. But rather defined by an interlace of bits and pieces I now put together to form one non-linear experience.

People always ask me, “Are you excited to go home?”, “Are you sad to leave New York?” I never have a “yes” or “no” answer. It would be deceitful to pretend that I know what this new road entails. I would be lying to say that I don’t have doubts about leaving New York and fears about going home. Doubts about staying in New York versus trying something new.

That is what this is. I’m going home; but what home? I was 19 and I’m now 27. I’m not who I was nor is everyone else, who they were. This to me, is a new experience.

New York is not where I attended college; grad school, took my first job, went through relationships, made friends, met mentors, lost my direction, learned to pay bills, learned to not want to pay bills, learned to play the guitar, encountered the drunk and the homeless, the funny and the hilarious. Put up with the disgusting smell of the subway, the heart-stopping cold when you need a cigarette, the dingy smell of the best bar you’ll ever go to. Saw the most beautiful humans to walk this earth, the ugliest, the nicest and the meanest. Got yelled at by strangers, was comforted by them when I couldn’t hide my tears. Where I learned to speak up and out and see what I’m capable of. Where I sat at restaurants, cafes, and bars alone; sat at restaurants, cafes and bars with friends. Learned the meaning of loneliness, learned the meaning of family.  Where I mastered the art of properly using my MTA pass without it saying “swipe again”. Found my love for art, found my love for social issues, found my love for truth, and found my love for knowledge. Quit smoking. Yelled at cab drivers and was yelled at by them. Where I dated up and dated down; smoked pot for the first and the last time. Where I found Seamless and quinoa, and my addiction to coffee. Where I realized I’ll always be the first to arrive for a restaurant reservation but will find someone to chat with, all while being relentlessly impatient with a beer in hand.

New York is the city I grew up in.

Those girls in the dive bar complaining about New York City, chose to live in New York City. That’s how it goes. While many choose to live here, New York feels more like its happening to you. You don’t do New York, it does you. It takes everything about you and augments every character flaw, strength and quirk you have. Everything about you is pushed to an extreme; tested to see what you are made of. New York can see every pretense and every lie. Every crack in every sentence. It’s the best place to play any role you want and the worst place to try to. It’s not about making it in New York. It’s about realizing what you are made of.

When I think about going home there’s a sort of numbness I feel. I’m not sad or panicked (at least not yet); I’m curious and interested. I want to see what me does somewhere else. I want to test what makes me me in a (relatively) new environment. I want to enjoy and have fun during my last couple of months and breath in the gross dirty smell of Manhattan, while I can. I’m excited to see old friends and indebted to my newer friends. I look forward to mountains but will miss walking anywhere I need to go. I’ll miss encountering every type of human and the diversity of this melting-pot. I’ll miss having my nerves shot because the train won’t move. I’ll miss meeting strangers everyday, because why not. I’ll miss wondering if my neighbors like me or hate me. I’ll miss speaking English and being Mexican among hundreds of nationalities. I’ll miss my routine and my space. I’ll miss my apartment and my bed. I’ll miss getting excited about fall, winter and summer. I’ll miss hating winter. I’ll miss how socially acceptable it is to have a drink past 12PM and I’ll miss having ten restaurants at a 2 min walking distance. I’ll miss having the deli open at 5AM in case I need to take a walk and a coffee shop literally downstairs from my home. Most of all, I’ll miss knowing that I am not the only one who feels this way. If anything, I’ll miss the collective that is New York City. A city that happens to us.

Thank you New York City, everyone and everything in it, for making me be me.

My Face: When I look in the mirror

I’ve only written once about my personal experiences in terms of self-perception and body image. I dedicated it to my parents as an ode to them for what they’ve done for me. But this time around I thought I’d share a bit about what it actually feels to be me.

My experiences may seem in one way unique but I believe they transcend specificity and may have an affect on anyone that has, at any point, looked at themselves in the mirror and asked: is that really what I look like?

Everyday, I wake up, drink two cups of coffee while I watch the news, put on my gym clothes, and enjoy an hour of working out. Working out no only makes me happy, but confident. It’s something I’ve been working on for a while. As a self-admitted low self esteem girl, working out has done wonders for me.

I like my body. I eat well and feel good (despite my smoking) .

But while I am able to mold one thing, there’s another I cannot.

As a way to practice my guitar skills (or lack there of) I like to film myself and play it back. It allows me to see what I am doing wrong both on the guitar and vocally.

As I was just doing it now, I realized why I had not done it in a while.

Forget the guitar, forget the bad singing; I don’t like what I see. Who is that person? I don’t recognize her.

Out of my experiences from having had so much surgery and physical change, there is one thing that has had, and may always have, a strange and unfamiliar effect on me.

My face.

My face is not equilateral. This is due to my hemifacial microsomia.   This means that one side looks one way,  and the other looks another way. Anyone that knows me, knows this. I’m used to it. It’s part of me. It’s broken me. Made me. Completed me.

But what no one knows is that, because of it, reflections actually switch on me.

And that FUCKING sucks.

You know that thing where if your shirt says something, it switches when reflected on a mirror?

That, to me, is my face.

Imagine being used to your face looking one way; as reflected on a mirror. You’ve practiced talking, moving, even singing, in front of it. But then, you see yourself on a camera, or a photo, and the reflection has switched on you.

You don’t move like yourself. Your smile is crooked.  Your eyes are lopsided. One side of your face is stiff. And you can’t match the voice to the person presented. Everything seems out of place.

Well, that’s what happens to me.

When I look in the mirror; I see one thing. But when filmed or photographed, I see another.

What I’ve practiced and looked at for my 26 years of life becomes a deception when I am able to see through another’s eyes.

It’s not that I don’t like being filmed or photographed. It’s that the person that will live in that documentation is not recognizable to me. It’s about changing the whole composition of my face and how I perceive it. It’s about more than a trick of the camera. It’s a trick on myself.

I’ll admit something.

I work hard on my self  presentation. I do what I can to make my body look good. I use my style savvy to look confident and exceptional. I use my brain as a way to distract others from my insecurities. I love clothes as a form of self expression and use them to make myself look as good as I am able to feel.

But these are also masks. Masks to push back the fear of that reflection. The reflection I am so scared of confronting now and again. One I don’t recognize. One that reminds me that what I see, may not necessarily be what others see. It’s not a simple “love yourself” issue. It’s a trick of the brain that haunts me now and again whenever I see my self reflection.

But, hopefully, one I’ll eventually accept.