Since January of this year, I have had to change my latest wound (a complication from a previous procedure) by myself without family to help or nearby while I've been away at school (finally finished with doctoral coursework!). And so, as I prepare to head home for the summer (finally!), I wanted to take this Face Equality Day to just say a few words about the experience of changing my own bandage which seems simple but, as I discover, is ripe with meaning.
I take my bandage off. And I look in the mirror.
There is a hole in my face. Beneath this bandage. Back in June, before the twelve-hour procedure to replace my jaw, I had a chin there. A rounded bulge of pink tissue covered by chocolate brown skin. But now? There is a metal bar with bone underneath. When I try to describe it, my heart quickens, my chest feels a little heavier, my breath is harder to catch, and my eyes water. Silver and once slick, the suspension has turned dull, but it is still clean. Because I try to clean it every day. I cannot do it twice a day as deemed “ideal” by my specialist. But I can do it once. So, I do. I take my bandage off. And I look in the mirror. The metal is rounded slightly and has two screws on each side. As I am cleaning the wound, one of my screws, already loose, falls out and into a piece of gauze saturated with peroxide and dried blood. I pick it out slowly with my hot pink nitrile glove. I wipe it off and hold it in my hand. I almost throw it away. I almost believe the tiny fastener has done its job. But as I look closer, taking slow, steady breaths, I realize it has something to teach me.
Earlier this week, I learned that neither the screws nor the metal bar in my face are needed anymore to hold my new jaw in place. The wound on my right leg has also healed where doctors took a section of my fibula, cut it into pieces, and fashioned it into a fresh jaw that has no traces of my rare condition, Arteriovenous Malformation. The medical team then shaved a thin piece of thigh skin as a graph to cover the area on the side of my lower leg where the bone was taken. My knee and ankle are now less stable, but I have learned to walk again. The epidermis-less skin on my upper leg burned when it was finally exposed to air, but it had to be exposed in order to regenerate. Now, it no longer hurts as much, and I no longer need the nonstick pad underneath my pants. I am still learning to speak and eat – and just be – with my new jaw, but I am grateful this leg-turned-face bone will not grow with any further hormonal changes. However, my chin was damaged during the surgery, exposing this metal plate. And these screws.
To have a craniofacial condition is to have a body that is both uncontrollable and inescapable.
This screw, in my hand, is a reminder of so many things I am still working to unpack in my mind. Maybe there is something turning in my subconscious about feeling exposed. It is an overwhelming feeling. To have a craniofacial condition is to have a body that is both uncontrollable and inescapable. My AVMs have not only ravaged my body – taking over or threatening to destroy parts needed to function (tongue, eyes, ears, nose, throat, brain, jaw, leg, etc.). They have not only inflicted me with excruciating pain through misconnected arteries and veins that can bleed profusely without notice. Having a craniofacial difference has also left me exposed to the world.
When I was a small child, I can remember being in a gold-plated elevator with mirrored walls and mellow piano jazz playing from speakers in the ceiling. The doors opened, and people poured in. Standing in front of me, my mother turned her body toward them, pressing me into the warmth of her back. It felt safe. It felt secure. No one said a word. There was no bug-eyed gawking, no whispers, no children pointed, no adults looking over sheepishly for the second or third time. No one asked my mother what was wrong with me or what happened to me or when I was going to get my face fixed. No one suggested we pray for God to heal me. None insinuated that all we needed was more faith. Because they could not see me.
The older I got, the less I could hide behind Momma. Now, I have heard it all. I have seen it all. Until very recently, the exposure has been constant over the past twenty-plus years, from the time I walk out of my home until the moment I step foot back in it. There has been no amount of makeup that could change it. No amount of surgery that could make me look like everyone else. And oh, how people have wanted me to look “normal.” For many, the unusualness of these “different” faces – slopping where faces should not, stretched here, pinched there – can just be plain uncomfortable to look at. It rarely occurs to those we encounter that instead of wishing, praying, or asking about some forthcoming change to our appearance, the change should be in them. That maybe they could practice disciplining themselves so that they no longer react to us based upon their own uncomfortability.
Once the world goes back to normal, once all the masks are put away, I will be exposed once again.
Craniofacial differences can produce unconscious bias, especially the more pronounced the disfigurement. It starts with something immature like being left out of a picture with so-called friends who just want a version of the selfie they can feel proud of, one that is not open to ridicule, one they do not have to explain. However, it doesn’t end there. It evolves into being overlooked for a job by so-called equal employers who just for some reason do not think you are quite the right fit for their establishment although you are twice as qualified as the other applicants. The discrimination increases in consequence the bigger we attempt to play in the world. Growing up, I internalized the stigmatization. The more atypical I began to look, the more shame and disappointment I felt. Eventually, I left childhood and even young adulthood behind, transitioning into my late twenties and now early thirties. But I did not leave behind the shame. Not all at once. Like skin too constricting for the woman I am becoming yet too comfortable where it is, I have had to shed shame over time, with consistent effort and self-compassion. I have had to continually push to take my place – push against a society with deep-seated acceptance issues and against the lies I grew to believe about my worth, how I could expect to be treated, and what I could hope to accomplish.
When a person begins to truly get to know those of us with disfigurements, all those feelings about our differences – how to act around us, what to think, what to say – can subside. We then have space to transform from a physical shell to a full human being living an embodied experience – with thoughts, feelings, opinions, and flaws of our own. However, not everyone will get a chance to truly know us. They will not be blessed to do life with us, to witness our resilience and be transformed themselves, however subtly. And so, days like today are necessary. A day for me to tell you about some things that life with my face has taught me. And to remind you that, once the world goes back to normal, once all the masks are put away, I will be exposed once again.
I can see you. I can hear you. So, see me. See all thirteen of my scars. I have earned each one over forty-five taxing surgeries to date. Notice how the right side of my face does not move when I smile. The joy builds around my eyes instead. Hear me. When I speak, listen to me. Take what I have to say seriously. There is a saying about experience being the best teacher. So, there are at least fifty-nine lessons you could learn from me. And last, but not least, treat me well. Imagine that I have just put the screw that fell out of my face in a plastic baggie and tucked it into a drawer. Then I go and cut a piece of yellow sterile xeroform to seal in the moisture needed to help my latest wound continue to heal. Next, I cover the area with a nonstick pad. Finally, I peel the packaging from a fabric bandage to secure in place what used to be my chin. And then I leave my house, and I encounter you.
More on #FaceEquality Day and Face Equality International: #FaceEquality aims to eliminate negative social media activity, broaden representation in the public eye, stamp out appearance discrimination and challenge prejudice... so let's make it happen. Click here to learn how you can help.