It’s a Bit Personal

The thing no one told me, or more likely the thing no one anticipated, was that living in such a densely populated place like Chicago amplifies every social phenomenon one normally experiences in public, simply because there are so many people you see everyday. Outlier abnormalities become daily, hourly occurrences.

And I turned a lot of heads in the city, because, whether I like it or not, my face attracts attention. One by one, each out of the deluge of bodies wandering oppositely in front of me would turn, look at me, linger for two full seconds (longer than you think), and then quickly dart their eyes back down as I walked past.

And I can lie to myself and make up excuses for how a table of six at an outdoor restaurant would halt conversation as I walk past, or why the old man cleaning the entrance to his Gyro restaurant lingers a little longer on me when I wait at my bus stop, like I don’t know what’s going on in their heads or it’s probably not about you, people don’t really care, but when faced with overwhelming evidence these illogical, emotion based excuses whither away and die quickly.

It’s the result of Sturge-Weber syndrome, a neurological disorder apparent in one out of 50,000 new born babies, with symptoms including seizures, mental impairment, and, you guessed it, a Port Wine Stain birthmark on the face, originating in one of the eyes and spreading outwards across the cheek.

It’s this eye that will develop glaucoma later in life.

I got the glaucoma, but lucked out by missing the seizures and the handicaps — a rare occurrence, it turns out, in these cases (Type 2 of the illness if you’d like to get technical). I’m an oddity within my pool of 1/50,000 — 6,378 US citizens or 148,000 humans (seems like an elite group when you put it that way).

Probably the strangest symptom of my lovely affliction is that the skin with the birthmark grows thicker over time, attaining an unpredictable level of lumpiness and misshapenness over the next few years.

And I can feel it happening.

It comes on in waves, this warm, slightly tingling sensation in my face, like a wet slice of rubber being pushed up against my cheek. It started in middle school, where this sensation would wash over my face and amplify, and I assumed it was purely psychological, like a fucked up spidey sense warning me that I was being too self conscious. But reading up on my illness, on a whim, so perfectly described what this feeling actually was that it sent chills down my spine. This was the feeling of my face growing thicker, and there’s nothing I can do about it.

Sometimes I wonder if I’ve run across 50,000 people yet. Seems like a lot to wade through.

Because of my little pigmentary misfortune, throughout my childhood I was subject to battery of laser treatments, a brutish and antiquated method of lessening one’s facial imperfections via the magic of a high powered laser, penetrating the skin and killing off the indicted blood vessels, leaving behind a trail of horribly burned flesh. The treatment takes fifteen minutes, the healing process takes three weeks.

Three weeks of incredible pain, wherein I can’t much move my face or stomach the company of others. To keep my Harvey Dent mask pristine during this time I must lather it with petroleum jelly at all hours of the day, a thick goopy mess that leaves my face feeling festered and marinated, making me want to tear my skin off and just be fucking normal. I look purple and swollen and grossly shiny, so I won’t ever leave the house. Showering becomes awkward. Eating becomes a re-education. For three weeks I live in near total isolation, going mad with depression and anxiety and self hatred.

It’s remarkable how quickly you abandon notions of self when you’re forced to sit alone in a pool of pain and disgust.

These treatments started as a baby, and they continued at a yearly frequency or higher until high school, where I took longer breaks but pushed through a handful more procedures. And I grew weary. The pain was too much, and the isolation was horrifying. The results I got were meager, only to be later trampled upon when the birthmark, in a cruel twist of fate, re-darkened.

So I decided to stop. This annual agony was too much to handle.

There’s a special type of rage reserved for when your doctor, an experienced and highly paid medical professional, lies to your face and assures you that this one will be the last one, that the life long nightmare after this will be over, that you will be normal once you push through to the end.

My face is pocked with scars, most notably in areas where facial hair won’t grow, as a result of a fruitless, expensive venture filled with pain and angst. I spent so much time in hospitals as a child I’m now emotionally triggered by the smell. Seeing E.T. for the first time gave me an anxiety attack because the hospital sequence was scarily accurate, down to the specific beeps of monitoring machines and the loud jumble of surgeon voices. This moment scared me away from all movies for a few subsequent years, out of a deep fear that something similar would horrify me in such a peculiarly visceral way.

It can be disturbing, sometimes, to spend time thinking about my illness. It’s discomforting knowing that I’ve had this my whole life, and I can’t know what life is like without it. From the moment I was born to now, all my social experience has been filtered through the lens of looking different, and I’d be naive to assume that the whole time I wasn’t being treated differently by those around me. It’s discomforting to assume that likely all my personality is formed around dealing with this abnormality, my tendency to try to dominate through intellect and humor, to push myself towards leadership roles, to be the guy who’s “comfortable” and “mature” and “seems old for his age” and “totally isn’t at all affected by this thing on his face and in fact is so smart and mature now it seems totally irrelevant.”

The clearer the linkage between my face and these traits grows, a defense mechanism only a handful of layers deep, the more they make me uncomfortable. I start to see how such a ground to build a personality on is shaky and tiring and unsustainable, a seeming effort to place the comfort of others over the comfort of myself, like a social magician frantically throwing glitter and smoke bombs to distract from the thing no one really likes talking about, to cover up and overcompensate for the fact that I look different.

This type of depressing self analysis turns on and off over the course of years, and when it’s on life moves like jelly. I become painfully aware of all the little social things that could be because of the birthmark, but in all likelihood aren’t. It’s a strange headspace that I have to fight to keep myself sane, the constantly running thought process of did she look down just then because it’s so hard to look at me, did he pull away eye contact too quickly because of me, are they not talking to me because of my face, etc. in an anguishing list of narcissism and self absorption.

There’s a mind fuck aspect to all this, in that I can’t know for sure whether my birthmark has any effect on social situations at all. A good scientist would have a control measurement, some other sample to compare their results against, yet unfortunately I know not a world where my facial pigment is symmetrical. The social cues I’ve read from others my whole life is all I know, so my experience could be vastly different or inconsequentially askew, and I can’t know.

Still, I’d be a fool to overlook moments like a stroll along Albert with friends when a drunk guy sitting on the curb shouts Woah bro, are you okay? as I walk past, a moment I instantly read as ignore, or else it’ll become a thing and I dutifully follow, not interrupting my flow of conversation as though I didn’t even notice.

I’ve been playing around with the idea of makeup lately, an internal debate that’s more frustrating than I feel it should be. I consider myself a “gender aware person” or whatever the fuck cis straight white blowhards call privilege awareness, so I feel it shouldn’t be a problem to at least imagine a world where I wear makeup most days — roughly half of all humans seem not to mind. Yet I can’t get over these weird hurdles, like the cost and the time commitment and the judgement of others — all nonsense when one considers the possibility of living a life free of these doubts. It’s all likely to do with internalized misogyny and fear of change, something I should probably get over if I want to be a functioning adult.

Yet despite my narcissistic pouts, I can’t ignore the fact that I’m leading an awesome life. I’ve had a successful micro-run as a classical musician, I’ve traveled the world, I’ve gone on dates and had romantic relationships, I have now far more friends than I ever imagined for myself when I sat alone in my room wearing the clothes of a high school freshman, I get to perform with a kick ass improv team, my film work has already found homes at film festivals, I’m making moves to follow my dreams, and people seem to like me. And no one has ever told me I couldn’t do something because of my face. Never. Not once.

So then an identity crisis emerges: Is this part of my face a part of me, or is it a nuisance to be ignored and cast aside? If to wish for a different face is to wish to be a different person, is that something I really want or need? Who am I to say I’ve ever really been impeded at any moment of my life? I’ve done amazing things and been lucky enough to have incredible opportunities and befriended so many wonderful people, and for all I know it’s because of my birthmark, in some strange way.

Like I said before, I have no control group, so I quite literally can’t know.

I suspect, however, that as I move along in the adult world it will start to become more of an issue. As I move to Chicago to pursue improv comedy and try to make myself in the image of a comedic stage actor, it’d be foolish to say such a thing wouldn’t be a hurdle. Though my aspirations lie on the side of writing and directing, simply trying to get on a Harold team as I am may invite negative, albeit perhaps more unconscious than conscious, judgement from the gatekeepers and keymasters of that world.

The counterpoint being an aggressive call to arms, an alpha declaration that I will work so hard and become so skilled that the issue will be forced, and I’ll transcend my external appearance. And sometimes I feel like that could really work, that I have a deep enough well of ambition and motivation to see that directive through.

But when I look at my heroes, and then literally look at them, I can’t help but feel disheartened. I’ve never read or heard of anyone in my field who’s done the same thing, and maybe it’s more than a numbers thing. Maybe it’s just not something that in this line of work anyone could transcend.

Then you’ll be the first! cries the last drop of testosterone in my body.

I don’t know.

Maybe my pride is making things unnecessarily difficult. Maybe the seductive power of people feeling too awkward to point out the obvious when I reveal my ambitions is misleading me. Maybe I’ve had a lot of dumb luck that I take too much for granted to even see. Maybe I’m just an idiotic self-absorbed kid who thinks he can get away with anything without at least considering the advances of modern cosmetic technology. Maybe it’s not that big a deal and I should get over it. Maybe I could just wear makeup for shows and auditions and it’s really not that much of a thing.

Maybe I think too much.

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One thought on “It’s a Bit Personal

  1. Terrific column. And without being able to explain what I mean, may I say, simply, that you struck the balance exactly right. What balance? Trying to spell it out would denigrate your achievement, not just your writing achievement here, but your personal achievement in being the most you that you can be. Is it clearer if I say that there isn’t a phony word in this column? Okay, I give up. You are a really okay guy with me, and I’d welcome the chance to meet you.

    Like

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