I remember the day I started researching the Vascular Birthmark Foundation, and the first time I discovered its International Day of Awareness. Not only did I love the idea of a day dedicated to encouraging people to ask questions, but it just happened to fall on the day before my birthday.
Every year since, I’ve tried to do something on my own to promote awareness, even if it’s just something small. One year, I posted facts on social media about my type of birthmark; another year, I shared letters I would’ve written to my younger self. There was one year when co-workers went without makeup to show support; the same year, I had people privately message me to ask me questions they were always a little too shy to address before.
I wasn’t sure what I wanted to do this year, so I decided to focus on another aspect of VBF International Day of Awareness: Bravery. People are encouraged to ask questions, but they’re also encouraged to be a little more bold about their experiences growing up with birthmarks. So, today, I’m doing two things that I’ve never really done. I’m going to post several makeup-free selfies on my Instagram and Facebook accounts, and I decided I’m going to share something I wrote.
A little background: I wrote this personal essay a few years ago for a competition, and other than the judges, the only person who has read it is my best friend. It centers on some things that happened about four or five years ago, when I was married and was living in Nevada. While it isn’t one of my most favorite things I’ve ever written, I think it’s an honest piece and it addresses a lot of important things, for me.
So, here’s to being brave.
Red
Should you be lucky enough to witness the rarity of lightning striking sand, you will watch as the sand is transformed into a deep gray, uneven glass formation.
I found myself thinking of this notion often, as we traveled down the single-lane road flanked by dunes of sandy soil, always bathed in sepia behind my favorite aviator sunglasses. But here, in the northern Nevada desert, there never was any lightning. There was barely any rain.
Heaping mountains flanked us on all sides. At night, under the unnaturally large, bright moon, they looked like the humps of sleeping dragons. I thought of tiptoeing past, a jingle of a zipper on a suitcase, wild eyes and snapping jaws shepherding me back to our second floor apartment. I spent most of my days alone. Sometimes I enjoyed the deep silence. Other times, I longed for the sounds of traffic.
Here, in the desert, I uncovered secrets that others had hidden away behind tumbleweeds and ancient rock. “You’ll love it,” they cooed. “Tell Jason to take the transfer.”
“There are no bugs!” I remembered, as I eyed a large black widow spider weaving her horizontal net in the rock garden outside our apartment block.
“You won’t have any allergies!” I woke every morning with a headache and stuffed nose.
“So, you’re naturally curly,” someone remarked. “You’ll love that there’s no humidity. There’s barely any moisture at all.”
The patches started on the back of my neck. Then, the inside of my right bicep, a cluster of itchy, angry red bumps. Then, my wrists. Scalp. Ankles. Belly. Eyebrows. Eyelids. Shins. Thighs.
The eczema diagnosis had come a few years earlier. I remembered rubbing moisturizers into my skin, and watching the itchy patches fade. Here, in the desert, the lotions dried instantaneously. I sat in tea baths, sometimes three times a day, watching sprigs of chamomile and nettle leaves floating past on water that smelled more chlorinated than the water on Long Island had. I listened to “Good is Good” by Sheryl Crow, echoing on the tiles in our large master bathroom, and I cried, until the tears made my eyelids itch even more.
And then, I’d get out, pat dry, and go to bed. In my sleep, I’d scratch. I woke up to tiny bloodstains that ruined more than a few pillowcases. Tiny gouges appeared on the backs of my knees. I got so tired of the sight of my own blood.
I bought expensive eczema lotions. I bought apple cider vinegar that seared the raw patches and made me walk around the apartment smelling like dirty feet. Our dog would not come near me.
I stared at myself in the mirror and hated my skin.
Again.
My mother said that she knew something was wrong when the delivery room went quiet. And after, when the nurses tried to deter her from visiting the nursery. Only research that has been recently released explained the true cause of the deep, reddish-purple masses on my foot, calf, back, chest, scalp, and most notably, nearly the entire left side of my face and jaggedly bordering the right. Nevus flammeus.
“A port-wine stain birthmark,” she explained to me. “Because the color looks like that type of wine. But if anyone asks, you can just tell them it’s a birthmark. Just say ‘I was born that way.’”
And I was. Genetic tests show a randomly single change to just one gene after conception is the root cause—a mutation that occurs with the rarity of a lightning strike.
But this lightning strike touched a lot of the sand. It stretched to distort the way I related to people I did not know—ones whose stares made me feel small, and that reduced me to nothing but the red target on my face.
“Redface,” an older boy hissed at me on the school bus.
“It’s the girl with TWO faces!” Another boy shouted on a class trip.
“You have Fifth disease!” A boy said to me at the town pool.
“No, I don’t,” and even I was surprised at my incredulousness.
“Yes, you do,” he replied. Who does he think he is, telling me what I have?
There were the more benevolent.
“How did you get burned?” A girl asked me.
“Oh my gosh,” another exclaimed. “Do they hurt? Your scars?”
“What happened?” Someone else whispered, and gently gestured to her own face, in case I needed the clarification.
And then, there were my favorites—the ones who behaved as if I were like everyone else. The ones who did not look twice.
The girls in the bunk during our fifth grade trip to Greenkill, who looked me in the eye as we passed around a book of scary stories to read by flashlight. My friend, Lisa, who smiled brightly instead of uncomfortably, as we were introduced.
My mother, whose reassurance was constant, who showed me that there was no need for shame.
I remember going into the city for the “test spots,” my parents explained. I wore a dress and met Dr. G., and put on oversized, protective goggles with red lenses to protect my eyes. I lay on my right side as he gently pressed a laser beam behind my ear, three spots descending, like tears. I remember hearing an odd sizzle. In the days that followed, my parents showed family members and friends, folding back my ear to show them where the laser had touched me.
“Can you see? Do you see how it’s lightened?” My mom asked, as she held down my ear in front of the mirror. And I nodded, even though I couldn’t.
She’d wake me while the sun was still asleep, and before I knew it, I’d be getting into the backseat of the car. I’d watch the dotted lines of the highway out the window, and eye the hem of the dress I was allowed to wear, even though I’d be changing out of it soon. I’d slink down as the car would approach the Midtown Tunnel and feel a surge of nausea—I wasn’t allowed to eat in the 12 hours before surgery.
The outside world would be swallowed by shiny, graying tiles and muffled tires over the span of road, everything darkened even though the sun had risen. My dad told me that we were under water.
“So if there was a hole, there’d be water coming in?”
“Mhmm. It would be coming in fast, too.”
Sometimes, I’d keep my eyes on the curve of the tunnel through the windshield. Other times, I’d lay flat against the seat, so I would not see the reflection of the sun on the tiles as we approached its exit. When the light broke out over the car, it meant that we were almost there.
There are parts that get fuzzy. The “Day Surgery” sign suspended from chains in the hallway. Clutching at the waistband of the hospital pajamas that never fit, no matter what size the nurses gave me. The itchy covering stretched over my head. The scratchy paper booties on my feet, through which I could still feel the cold emanating off the floor. The head covering and the booties they would put on my teddy bear. The anesthesiologist, who was so tall that his head nearly brushed the ceiling. My dad, ever trying to bring laughs, pointed at his clunky rubber clogs behind his back.
“Jaclyn, look at how big they are! Like clown shoes!”
The “practice” mask they kept in the waiting examining room that I wouldn’t touch.
I used to try not to tremble as I sat on the table, staring at the two doors of the room–the one that led out toward the doors of the hospital, and the other that led into the hallway toward the operating room.
Eventually it would swing open slowly and Dr. G. would come through, in his blue scrubs, wearing the same itchy head covering and booties over his shoes. I’d want to burst into tears, even though I liked Dr. G. But I wouldn’t.
“What a trooper,” they’d say. “A little VIP. She never cries.”
I’d smile, someone, either Dad or Mom or Dr. G. would lift me off the table, I’d take Dr. G’s hand, and he’d take me through the doorway, into the terrifyingly stark white room, machinery flanking the solitary bed. I knew the nurses were smiling behind their masks by the way their eyes crinkled. Their voices were soft, and the doctors were always gentle when they lifted me onto the operating table.
My own mask would come then, thick black rubber, fitting tight over my mouth and nose and I’d feel like I was back in the Midtown Tunnel, no air to breathe, no sunlight to see. They’d try to make it smell like chocolate (and one time, strawberry) and I’d follow the clear, ribbed tube snaking from the end of the mask to the machine. I couldn’t see where it ended. It only smelled heavy and sweet for a moment before the real stuff came, the thick, suffocating odor of the anesthetic and I’d want to cry again.
Things would start to get blurry. It always seemed that there were more people in the room then; voices got louder and oddly garbled, and I could not understand. I remember feeling like I was sitting on a runaway carousel, spinning, spinning, spinning me until everything bobbed up and down and my stomach flipped over. I couldn’t say stop. I couldn’t say anything. And then, the end. The room would go completely fuzzy, like I had my eyes open underwater. I’d hear one noise—one set of blips and beeps coming from one of the machines. It was always the last thing I heard before the blackness came.
I’d sit groggy in the car on the way home. I’d watch with one eye, since the other was usually swollen and covered over by the bandage. My face would feel hot and uncomfortably stiff. I was nauseous, always nauseous, the taste of the anesthetic still at the back of my throat, even when it should have been washed away by the juice they made me drink in the recovery room. Sometimes, I’d get sick. Sometimes, I’d want to cry, but knew I wasn’t supposed to get my face wet. And I knew I’d have to hide from the sun for a few days.
It started working. The birthmark on my face lightened from purple to red, and in some spaces, it cleared altogether. I lost count after nine surgeries. After that, I asked if we could take a break.
My mother first let me wear makeup for one of my first dance recitals. She sat me on the lid of the toilet seat in the bathroom and dabbed on her concealer, eye shadow, blush, mascara. I remember looking into the mirror and being shocked at how I looked—moreover, what was missing from my face. I spent the night being careful not to touch my face and wipe it off, as if anyone didn’t know what was underneath.
When I was fourteen, she told me I could wear it all the time, but only if I wanted to. And so, I did.
Lightning struck again, and I was able to go out into the world and not be afraid to look into the faces that were there. I could make new friends without the big red elephant in the room. I wore it to cover up what I was born with, and I wore it so that nobody could see me, unless I wanted them to.
The staring, the whispers, the comments, the aghast faces disappeared. Soon, I could not go out without it. The thought of getting caught in a rainstorm terrified me. I would not wet my face when I went swimming, and I always wore makeup to the beach. Behind it were all of the things I wanted to hide, all of the things I could not say. That it wasn’t fair, that even with all of the nice things people said, all I could remember was the bad. That if I wasn’t so different, then why did so many people behave like I was? That I hated my skin.
That the hospital made everything inside me wobble, that a hand clenched my throat so I could not tell them how scared I really was.
“What a good girl! What a little trooper. She never cries!”
Not on the outside.
One thing I knew for certain about an eczema flare up was the elimination. No scented detergents, soaps, lotions, or moisturizers.
No makeup.
It wasn’t like I’d be able to wear it, anyway. My own tears irritated my skin. It was like I was allergic to everything in this desert. Even myself.
Another lightning bolt was snaking through the clouds over my head.
I remember walking through the automatic doors at Safeway—the first time I had left the house without makeup in sixteen years. A lady near the deli counter did a double-take before turning to eye the sandwiches. After that, there was nothing.
I walked through the aisles, latched firmly to Jason, and I counted how many people looked up and walked past, as if there was nothing to see here, nothing at all. After fourteen, I stopped counting.
The next week, I sat anxiously in the office of a highly-rated dermatologist, the familiar unpleasant fluttering snaking from my belly to my chest. Even the sight of Jason, sitting in the chair next to the exam table, did not settle me. It was like I was back in the hospital, waiting for Dr. G. to take me off into the room, away from everyone, swirling out of consciousness as if I were circling a drain.
The doctor was a petite woman with straight hair the color of onyx, and a compassionate smile. She asked me to change into a paper gown and shook her head at the itchy patches covering my arms, legs, stomach, and face.
“The flare-up is likely allergy-related,” she explained. “You’re not used to the dryness, not to mention all the pollens that are constantly blooming and blowing around out here.” After she sent three topical prescriptions to the pharmacy, she retrieved a corticosteroid shot, the needle like a long witch’s fingernail. The eczema began clearing in a few days. The bruise from the needle lasted for weeks.
We went home and washed our clothes with clear, unscented detergents. I traded my beloved flowery-scented lotions for large tubes of thick Eucerin. I wore my hair in my face, my beloved large aviator sunglasses, and a hood when I walked our dog outside.
And then I realized there was only so much time I could spend inside.
We went to a movie on a weeknight, when the theater would be empty. I sat in the dark and rubbed at an itch on my eyelid, feeling relief when there was no film of eye makeup left on my hand. Curious teenagers glanced over in the dimly lit hallways after the movie had let out. I tried a tight smile, even though I still could not look up at their faces.
We took the dog for a long walk around the man-made Sparks Marina on a bright Saturday afternoon, and from behind my sunglasses, I watched the faces of the families that passed us on the path. As people skated, laughed, and chased by us, I wondered what I had been so afraid of, all along.
It was kind of nice getting to wake up and skip over the twenty minute makeup routine—what I had always dubbed “the worst part of my day.” It was relieving to pull a shirt over my head at the end of the day, the ring of tan cover crème missing from the collar.
After the eczema flare-up had soothed, Jason and I went into Safeway to do our weekly grocery shopping. As we stood in the bakery section, an older couple picked up a plastic clamshell container of chocolate drop cookies.
“Those are addicting,” I said to them, over the table. “They never last more than two days in our house.” They were polite, even though they looked a little uncomfortable. I smiled into a bread display. I had forced myself to be brave.
The next week, I made small talk with the friendly cashier at Trader Joe’s. I raised my head and made sure to note the color of his eyes, to ensure I had looked into them.
I nervously text-messaged my hair stylist, Melissa, a pretty redhead with a warm smile and a collection of awesome tattoos, to tell her that I would be sans-makeup at my next appointment.
“No worries,” she had texted back. “It’s only going to be me and you in the salon that day, anyway.”
After I had stepped into the salon, bustling with women under hair dryers, getting fringe cut into long hair, and waiting for dye washouts, she offered a hushed apology that the salon was so crowded.
“It’s really okay,” I said, and I smiled.
“You know, Jackie,” Melissa said later, as she collected payment and set my next appointment. “It really isn’t bad, at all. It’s really much less than you described.”
On the way home, “Good is Good” by Sheryl Crow played through the speakers in my car.
Good is good and bad is bad
But you don’t know which one you had
I remembered my mother’s voice close to my head, saying it was okay to be different, that it didn’t matter, since I was a good person with a lot of friends.
I remembered the little girl in my dance class, who told me she thought my birthmark was pretty.
And every time you hear the rolling thunder
You turn around before the lightning strikes
I remembered Dr. G. standing in the operating room, and showing me what the laser looked like.
“See that green light?” He smiled as he shined it on his hand.
I remembered the faces of my classmates, in elementary school, high school, even in college, who were interested—maybe even a little awed—when I told them about my surgeries.
I remembered the boyfriends who told me that they preferred me without my makeup on.
I remembered the people who told me about their birthmarks, when they saw mine.
And you could find a rock to crawl right under
And let your good times pass you by
Maybe it was because I had left everything I had known back at home on Long Island, and I had spent so much time by myself here in Reno. But I had realized that the only voices I listened to were the ones that were terrible—the ones that reduced me, the ones that said I was ugly, the ones that said it wasn’t fair.
There, in the middle of the quiet nowhere, I wondered why the negatives had always been so much louder to me than the kindnesses. I realized that most of the bad things we think are things that we are telling ourselves. I had always had the power to choose which voices were louder.
Lightning had struck in the desert. And it had changed everything.
It is not always easy. There are days when I feel more insecure than others. I’m sure I will always feel anxious when meeting new people, or when visiting doctors. Some days, I still look at my feet in public. But the negatives are outweighed by days where I can look at the cashier or the pharmacist with no issue. They are outweighed when my friends and family members express encouragement when I tell them I’ve had more makeup-free days in the last year. I feel kind of awed.
No life is a beach, but if mine was, I’d be able to look back at all of the places where the lightning has marred the sand. Sometimes, I can see a nine-year-old me stomping her feet next to one of the misshapen, gray lumps.
But I can go back. I’d tell her to turn around, and look at the pathway the lightning paved, the route I had followed. I could always follow them back to the start.
We left the lonely desert two years after we had arrived, and I decided to bring my new outlook back to Long Island with me. During a makeup-free mall trip one afternoon, we escaped a throng of shoppers by ducking into one of those stores that sells funny little trinkets, placards with inspirational sayings, intricate glassware, rousing board games. A pretty salesgirl came up to greet us, and I instantaneously stared at the floor as I returned her greeting. I could see that she was staring.
When I raised my eyes, she smiled.
“I really love your hair color,” she complimented the deep burgundy I’ve been wearing since high school.
“I’ve always wanted to do a color like that,” she said, after I had thanked her with what I hoped was my most genuine smile. “Red is so pretty.”
And it is.
