“My Birthmark Odyssey: When It’s Comfortable to Smile Again”

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.

beforesurgery

Before facial reconstructive surgery

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.day18

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.day20

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 patheticallday27y 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.

 

 

 

31 thoughts on ““My Birthmark Odyssey: When It’s Comfortable to Smile Again”

    • Ashley, thank you so much! You’re officially the first person to ever read this! I am still very nervous about putting this out there and being so transparent, but it’s also a relief and cathartic in a way. I so appreciate your encouraging and kind words.

      Like

  1. Wow what an inspirational journey you have been on. You endure this journey with love and grace.

    I have known you so long that when I picture you in my head the birthmark doesn’t feature. It doesn’t leave an impression on my mind because it’s not who you are. Only after reading your reflection do I realize that people stare rudely or wonder what covers your face.

    In some ways it makes me so sad to belong to humanity, because no matter what we find ways to exclude others or make it known that we think they are different.

    I would love to see a book develop from these stories, and for you to create a platform where you motivate and encourage others to go after their dreams with the same tenacity and drive that you do.

    As a friend I never realized that this is such a constant source of anxiety and pain for you. That going outside feels like an invitation for judgement. That you don’t want to make eye contact and so on. The fact that you have achieved SO much despite the odds is so inspiring. Many of us would have given up choosing a reclusive life indoors. A life where we do not seek advanced education or work as a teacher to help empower high school kids. You have done that and more.

    So let me wrap this up and give a summation of how I feel…Proud – yeah I feel major surge of pride knowing that I have the privilege to call you a friend!

    Congrats on your new blog, you are beautiful. Don’t ever forget it.

    Liked by 1 person

    • Thendo, after reading this I am verklempt to say the least, and I do not mean like Mike Meyers from SNL’s Coffee Talk, but even more so. I’ll admit it. I cried like a newborn babe after reading your comment. Thanks so much for your kind words, positivity, and sense of empowerment. You are too generous and one who I consider to be a sister (albeit, blackanese and most likely adopted), so your opinions matter to me very much, more than you know. I value your insights and advice. I’ll consider to write when I have time about other relevant experiences. Who knows what will come of it…Thank you very much.

      Like

  2. Thank you for sharing your story! My son has a PWS and I saw your post on the fb group. I appreciate your honesty. I don’t even notice my son’s PWS most of the time and it takes me by surprise when someone comments about it. I know people are naturally curious, but I’m glad to see that more and more people like you are sharing their stories. Hopefully people won’t think it is so uncommon and will see the person not the birthmark!

    Liked by 1 person

    • Hi, I’m so happy you took the time to read my story. I hope that it doesn’t take him as long as it’s taken me to openly talk about it…. it’s been a challenging journey for me. It’s great that your son has a mom who cares so much! I’m not sure how old your son is, but there are really cool children’s books out there now along with personalized birthmark dolls. They are so neat! The more people see it, read about it, talk about it, the more normalized it becomes. 🙂

      Like

  3. I agree with Thendo that I never have thought of you as someone with a birthmark or any different than anyone else. You have always carried yourself with confidence and surrounded yourself with close friends and lots of laughter. I find you extremely rich in life, intelligence, and happiness. You have hid your inner demons well, girl. You are beautiful both inside and out!! I’m so proud of you for continuing to rock life in so many ways even as you struggle inside. You truly can do anything and sharing your story will only help inspire others to be true and real and to stay positive… cause what other choice do we really have!? Huge props and thanks for telling your side of things. Xx

    Liked by 1 person

    • Julia, thank you for your moving message. What a pleasant surprise…I had never thought that others perceived me the way that you describe. I appreciate your honesty and positivity! Thank you so much. I’ve gotten a remarkable number of positive responses from other people who have birthmarks or from parents whose kids do, and so I will keep writing. I didn’t expect to impact people in a great way, but you’re right. What choice do we have? Might as well make others feel less lonely or spread knowledge. Thank you again so much, and I hope you are doing great. Be well!

      Like

  4. First of all, thank you for your candidness and your ability be so straightforward and humorous about things people were too polite or scared to ask. For the record, I thought you were a burn victim (pretty dumb, huh?). I probably thought about your birthmark for a total of 30 seconds after I met you and then your “larger-than life” personality took over and I forgot about your birthmark (that has been with you your entire life) and thought, instead, about how smart and hilarious you are. I had no idea that you are self-conscious because your personality exudes such confidence (and sassiness). You are such a strong, courageous person and I can’t express what an incredible role model you are to so many (and hope I don’t sound like a complete idiot here) Thank you!

    Liked by 1 person

    • DeAnne, thank YOU so much for your supportive encouraging words. Coming from you, that means a lot. It’s funny to me that people say they don’t “notice” it after they get to know me, when most of the time, it’s what I think people continue to notice…Thank you for your frankness. It’s taken me so long to get to the point where I’m comfortable enough to talk about it, to write about it. It’s scary to put myself out there, but if other people can identify, feel less lonely, or get a better understanding of what other people like me go through, then that’s all I can ask for. As for my sense of humor, it’s definitely a defense mechanism (psych term–see what I did there?). For the record, when I am around other people who are even more hilarious, like yourself, that’s when the sass comes out! Thank you DeAnne 🙂

      Like

  5. Wait…you have a birthmark?

    Beautifully written, On. I would never have known what it’s been like for you, or that you’ve been made to feel different. How naive of me to take you simply at “face value.”

    Lots of love ❤️

    Like

    • Elisabeth, That’s the best pun I’ve heard in quite a while. It’s about me “facing” the truth with honesty. I was really scared to do this or to even share it, but it’s been rather cathartic, and if I can positively impact someone else or help people better understand where I’m coming from, then that’s all I can ask for. As one of my close friends, I appreciate your comment and thoughts very much. Thanks for reading and sharing.

      Like

  6. Wow, this is so beautifully written and described I had goosebumps the whole time I read your story! I’ll always stand by you being my hero and I remember everything you’ve ever taught me in school! I’m simply amazed how far you’ve come and in my eyes you’ve always been a strong women and continue to be even more now! You rock! Lots of love and support over here!

    Liked by 1 person

    • Tonia, Great to hear from you! Thanks for reading and sharing. I really appreciate that so much. I never really thought of former students reading my blog, but it’s really neat to be able to share. Thank you so much for your positivity. Hope you are well!

      Like

    • Danny, thank you so much for your encouraging words. I’m currently working on a biographical war novel, which has been in the works for years. As I collect short narratives and memoirs, perhaps I will create something of a book. That’s a great idea that I hadn’t given much thought or consideration. Thanks for reading and sharing!

      Like

    • Sarah, thank you for reading and sharing! It is highly personal and scary to put myself out there so transparently, but I’ve received such overwhelming support surprisingly and many people who can identify with my experience who have reached out to me. That is all I can ask for…thanks so much, Sarah!!

      Like

  7. Thank you for being so transparent! Your story truly touched my heart as I now can understand better what my son may be going through. It is really hard for me to see him being starred everyday.

    Like

  8. Hi,
    I also have a port wine birthmark on the side of my face, I never received treatment when I was younger so it was quite dark and I was getting so tired of always having to apply concealer first then foundation, then more concealer and then setting powder before heading out, so that’s when I starting looking at other options. I stumbled upon the Basma Hameed Clinic and was shocked to see their work.
    I went in for my initial consultation and decided to move forward with the micropigmentation procedure to help me camouflage the birthmark since I’m clearly no makeup artist when it comes time to covering it. I’m now at my 5th session and I cannot believe the results, I’ve been able to save so much time in the mornings getting ready, it’s been a real time savor!

    Like

    • Hi Cathy,
      This is fascinating. Thank you for the resource. It’s great to know that pulse dye laser and other lasers aren’t the only options. It’s neat to think that tattooing can have a medical application like this. Good for you. If I lived near one of the office locations, I’d totally pursue. Good luck to you and your future endeavors 🙂

      Like

  9. Dearest Lan, I have read all of the above comments and there are so many I agree with. Since meeting you, I have to admit it was almost love at first sight. After a moment, I never saw your wine stain, but saw a soul that is simply beautiful. I admire you so much…family, husband, beautiful children, and following a career path that is extremely challenging. So much you have done on your own…so many decisions you have made for yourself that ended in great success.
    Your story is so real. It took courage to share it, but, I am sure the feedback you have heard makes you proud of how important it is for others to relate to.
    God Bless. I agree there is a book here. However, I hope you finish the book on your father…another challenge, but look how much you have learned from that.
    Love you to pieces, Lan, on so many levels.
    Caroline

    Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s