As humans we have a propensity to want to influence the outside world, to leave a mark, some sort of legacy. We have a natural instinct to want to communicate and share our lived experiences by way of storytelling. As social beings, we also have an innate need to want to belong, connect and to share knowledge with others who will listen. We all do the best we can with what we have as we try to navigate this odyssey called life.
After an 11 year hiatus, I’ve chosen to resume laser treatments and surgeries to treat my Port-Wine Stain birthmark and hemangioma, making this my twenty-ninth laser treatment and third facial surgery. This narrative is about sharing my most recent experience about this winding odyssey on which my birthmark has taken me. It’s been a humbling journey full of downward and upward spirals. There have been many experiences up to this point, some of which I finally feel ready to share, and there will be many more. I wrote this as a sort of catharsis for me and for others like me. Thank you for reading and sharing.
“My Birthmark Odyssey: When It’s Comfortable to Smile Again”
When I was four years old, I can’t recall ever feeling uneasy when people looked at me, and I certainly don’t remember ever feeling uncomfortable expressing joy or registering a smile. That sense of self-awareness and self-consciousness quickly changes with age. For most of my life I’ve wanted to be completely invisible to other people, especially in public. To hear audible whispers and see that universal look of confusion and sometimes dismay, to see dozens of people’s involuntary lingering stares out of the corner of my eye every time I leave my front door, is exhausting. Children and adults alike do it, and who can blame them? We all know it’s not polite to stare, but my face is unlike others.
Like it or not, a face is the very first thing other people see. On mine I have a bright red Port-Wine Stain birthmark that consumes nearly the entire left side of my face. Like a paint splatter, it begins in the center of my forehead, travels down my nose bridge, and spreads over my left eye and cheek. It goes around my nose as if drawn on that way, and most obviously it consumes my bulging upper lip on the left side of my face.
I look like a small child’s clumsy self-portrait or like Richard Harrow from Boardwalk Empire; like a Picasso with an asymmetrical face with a bulging lip on one side splashed with bright red and other whimsical colors on an androgynous semblance of a human face. I have a slight infatuation with symmetry because it’s something I don’t have. I find it abnormally uncomfortable to make eye contact while talking to other people, so I just don’t. At least I know that I don’t do it well. I rarely leave home without at least a bit of makeup on my face. Although I get stares whether I wear makeup or not, in my mind makeup is my protective shield against the outside world so that I may function like a seemingly normal human being.
As I wait in the bleach white exam room in a stiff cushioned chair, I fidget my feet and tap my fingers. I’m sweating, the kind of fight or flight stress sweat I get before public speaking. I look around and fix my eyes on a display of half a dozen of breast implants. These huge clear bubbles are full of clear liquid. With my finger I poke one and watch my finger indent into the mass and bounce back again. I quickly sit down in fear that the doctor will walk in and catch me doing something of an awkward dirty deed.
There’s a display case of pamphlets from male breast reductions (yes, seriously) to tummy tucks and facelifts. All the people on the pamphlets are white and flashing their pearly whites, as if their faces should be on a toothpaste commercial instead. I’m at the University of Vermont Medical Center Plastic, Reconstructive and Cosmetic Surgery, and I think that maybe I shouldn’t be here. Maybe I made a mistake. The doctor knocks and immediately opens the door. He quietly introduces himself an shakes my hand. He doesn’t look like a doctor. I could almost pass for a middle-aged gray-haired accountant or someone who pushes papers for a living. With his slicked back, almost-comb-over hair, full beard, and thin rimmed glasses, he strikes me as someone who might a mediocre life. Instead he’s the chief of plastic and reconstructive surgery.
“The nurse said there’s a newborn sleeping in here,” he said rather quietly glancing down over the rim of his glasses at my tiny doll faced baby snoozing in her car seat. How old is she? You’ll need to wait at least one month after giving birth before you have surgery. Your body still needs to heal,” eyeing her as if to gauge her age. I can tell he’s not much of a talker.
“She’ll be almost two months old by then,” I respond. He silently nods and scooches his stool closer to my face. His gloves smell.
“May I?” The only image that pops into my mind is that of Brian Regan’s stand-up about his eye exam and the optometrist, and I almost smile. I didn’t want him to think that I was awkward and smiling at him for no reason. He approaches my face with his hands, pushing and lifting my upper lip, and I don’t know where to look. I never know where to comfortably look when doctors so closely examine me, so I fix my eyes on the bulbous implants again.
In so few words I rehashed the story of my birthmark treatment history. I had explained that my journey started when I was five years old and after high school and college I stopped.
“Twenty-eight laser treatments. Two lip surgeries. One Gortex implant,” that’s right. The same kind of shit boots, hiking gear, and outerwear are made of. “This’ll be 29 laser treatments and three lip surgeries…”
What I did not tell him was my back story; that I had begun laser treatments at the age of five, and I had missed over 220 days of school by the eighth grade. And I’ve spent nearly 300 days of my life on bedrest or trapped inside avoiding the sunlight (mandatory the first weeks after laser treatment) and an incalculable number of hours contemplating why me?
What I did not tell him was how I remembered the hours-long silent car rides down from a podunk town in Essex, Vermont to sky-scraper Boston with my reticent father. I remember the warm orange liquid that I was forced to drink, the one that made me drowsy and hot; and I remember the big grownups who restrained each one of my limbs and my head by pushing me down into that gargantuan chair, which looked like a barbaric Medieval torture device. I remember that piercing sound of the laser machine rebooting followed by the loud snap of the laser as it burned hundreds of perfect tiny circles onto every part of my ugly birthmark. I remember the smell of my charred flesh, my muffled screams, and my hot tears that intensified burning. I remember the blisters that formed and the godawful swelling for days…
But of course, I didn’t tell him any of that. “And I read that you’re allergic to Percocet,” he says so matter-of-face. “Tell me about your last surgery.”
“Yeah, it makes me throw up. With the last surgery, I got home and was so nauseous that I puked. The stitches in my lip busted open, and blood started gushing everywhere,” I recalled. A deep furrow ran across his brow.
“Sorry to hear you had an awful experience. Hopefully that doesn’t happen this time. And that was,” glancing down at his computer and pauses, “11 years ago?”
“Uh, I think so. Sounds about right.” I didn’t know the exact date or year but remembered it had been a long time ago. She was an otolaryngologist, an ear, nose, throat doctor who specializes in disorders of the head and neck. I knew at least that much because I remembered having to look it up.
“Many doctors who aren’t plastic surgeons are hesitant to debulk enough,” he says pulling my top lip up with his thumbs as he inspected again. “So I’ll be making a few incisions here, here, and here,” he says tracing long my laugh line that connects the tip of my left nostril to the corner of my mouth and with his finger drew lines underneath my nose and top lip.
I’m not sure what to focus my eyes on, so I watch my IV line swing back and forth as we hit little bumps down the hallway.
I take deep cleansing breaths as I am rolled into the operating room on a stretcher. The room is metal and sterile and cold. There are a dozen people dressed in pale blue scrubs with only their eyes peeking through. They all look the same, and everyone is looking at me. No one is talking. I hear the low hum of machines. It’s that unmistakable sound of the laser machine warming up, and I start sweating. I’m lifted from the stretcher to the official operating table and directly above are what look like oversized spotlights. Someone starts to velcro massive cuffs to my calves.
“What are those for?” trying to see what they’re doing but am distracted by the ridiculously huge surgical lights overhead that resemble UFO’s.
“For circulation while you’re under anesthesia,” she says and puts a mask on my face. “Just breathe in this good oxygen. Deep breaths. That’s it. It’s so good…” I began to feel waves of tingles and the hums growing louder in my head. The sensation of calmness undulates through me. Aliens. Lights. Probes.
“Abducted by aliens,” I hear myself mumble aloud. And I begin to feel a slumber wash over me.
The first four days were a blur of hazy semi-conscious sleep and eating liquid meals through ridiculous neon flexi straws. Every couple of hours I sloppily fed my cluster-feeding newborn daughter; and while my head was dizzy and my face pulsating, I tried to avoid getting baby shit everywhere during her diaper changes.
Day 2. The incision along my laugh line was slowly leaking blood into the corner of my mouth as I lie on my back. With my system flooded with opioids, I stumbled to the bathroom to rinse the blood from my mouth. I caught my reflection in the mirror and just stared. I stared for so long that I lost track of time. Myself and I looked at one another, eye to eye in terror; I wanted to scream. Staring back at me was some fantastical thing from a horror movie. I was so tempted to claw my stitches out with my fingernails, but I didn’t dare touch.
The left side of my face was a deep purple-brown covered in perfect little dots from the laser. The three large incisions along my lip and face were black lines from the dried blood. What was supposed to be my top lip felt like a hard heavy red rock affixed underneath my nose; so swollen that it nearly blocked my left nostril. I counted 38 stitches that look like trimmed cat whiskers, and my face was inflated like a lopsided balloon. I knew this mangled face I was staring at was only temporary, but in my drug-induced stupor, I cried. I cried because of the pain that wouldn’t subside but mostly because of my ghastly appearance.
Day 4. I munched on ibuprofen, Oxys, and Dilaudids like they were goddamn M&M’s. It felt like shitting rocks and razor blades, and there was an incessant feeling of my sutured skin being stretched to its limit like the tight laces of a football, which pulled my top lip up and back in an unnaturally stiff way.
Day 8. With my face bruised and burned from the laser, 38 stitches in my face, and most of the black dried blood lines still there, I had to go out in public (to my post op appointment with the surgeon) with my bare face, which I carried with shame and no makeup. My anxiety was high. I looked like a walking zombie from a horror movie…except with better hair.
Day 12. My face felt like plastic; like a snake shedding its skin; like a knife had slathered the side of my face and mouth with cold thick butter made of days’ worth of dead skin and oil (a special essential oil blend I made for laser bruising and incision scarring). Damn, how desperately I needed to exfoliate!
*I didn’t take any photos before day 18. I hadn’t even entertained the idea of documenting or writing about my experience until two and a half weeks post-operation.
Day 20. A few of the 38 stitches have come undone, but the sensitive ones in my lip are stubborn. I stand in the shower, close my eyes, and put my whole face underneath the shower head for the first time since surgery. It tingles everywhere but less so where the nerves are regenerating. I feel one for tiny stream of water and let it trace along my upper lip where the stubborn stitches are. For a long time I oscillate my head slowly back and forth visualizing the water undoing each stitch along my upper lip and face.
Day 23. After staring into the mirror at myself and what few crusty black scabs and sutures are left, my impatience gets the best of me, and I proceed to pull out and clip off what I can. I sterilize a pair of clippers and slowly get to work.
Day 30. At my post-op with the surgeon, I showed him how I can finally close my mouth, albeit uncomfortably, and spent an absurd amount of time re-practicing bilabial sounds like “M, B, and P.” How cumbersome that my two front teeth are still my makeshift top lip. It’d almost be funny if it wasn’t so pathetically true.
Day 33. It still hurts to smile, as my skin pulls in awkward directions; I haven’t kissed my babies in over a month. On a positive note, I have met personal challenges. Since surgery, I have gone in public almost a handful of times without makeup on. I returned nearly every stare with a smile. So far, so good; no anxiety attacks yet…
*I plan to post a photo post-facial reconstructive surgery once I’m fully healed to compare before/after.
It has been about six weeks since surgery. My experiences have propelled me to become the strong individual I hope to someday be. I so wish I could be one of those people in the inspirational videos that stream on social media who preach about self-acceptance and inner-beauty. It would be disingenuous of me to say that I wholeheartedly believe that about myself; it has been and will continue to be a lifelong journey, an odyssey. It may take an infinite number of steps forward and perhaps an entire lifetime to get there. The honest truth is most likely I never will.
I know the winding path ahead means many more laser surgeries on my Port-Wine Stain with no promise that it’ll ever be completely gone and at least one more reconstructive surgery on my lip…and lots more self-reflection. The important thing is that I’ve begun healing physically and emotionally, inside and out. I’ve begun that long trek by taking a few small steps forward. And I so look forward to the day when it is comfortable to smile once again.
A story about Joann, a woman who has a PWS too. She’s inspired me to share parts of my own story.