The Scarlet Face of Shame: Vascular Birthmark Awareness

The Port Wine Stain community is extensive and worldwide, with the internet facilitating friendships between complete strangers. But while lasting friendships are not unique to anyone online, the bond found within a minority community can be extra special and meaningful.

Growing up without the internet was another story, however.

My parents were told at my birth that scientific research on my condition was not extensive and was in early stages of development. There was a support group, but it felt more geared for my parents than for me. It wasn't local, and there was no internet.

Life revolved at home, mostly. I did attend school a bit before my parents abruptly pulled me out to homeschool. I live in a lot of ignorance related to my condition.

It is medical, I know. I have a prosthetic eye for a detached retina related to congenital glaucoma, which in turn is related to the mass of blood vessels around my eye causing pressure. But my particular Port Wine Stain doesn't cause seizures, paralysis, or mental handicaps of any kind. I have been blessed (and I don't say blessed often).

It was a struggle still. I was the firstborn. My parents were young. And while I know better than to have kids before I'm ready, instead of practicing contraception to prevent further pregnancies — because they had their hands full with me — they went on to have five more kids, albeit healthy ones.

I struggle a lot with spite, to be honest. I have gone no contact with the family because their basic, bare-necessities parenting did not include the intense emotional support that I needed as a foundation for entering adulthood later.

This is supposed to be about Port Wine Stains, but I cannot speak about my childhood without mentioning my parents and the strain of our relationship to this day. Just the very name "Port Wine Stain" was, in our fundamentalist religious family, spoken rarely and in hushed tones when necessary. The parents abstained from alcohol nearly entirely, in fact. Because they were concerned about "causing others to sin," alcohol wasn't allowed in our house.

I grew up with the sense that there was something significantly, sinfully wrong with me that could send someone to Hell, or at the very least to a life of drunkenness. It's all so ridiculous, but this is how my mind worked at the time, with so much shame.

So we referred to my purple/red face simply as a birthmark, which is not inaccurate. That's what a Port Wine Stain is. And really all I needed to label it as. When I was sixteen, I was sponsored for my first-ever laser treatment. My parents had declined such treatment before that, as they were more afraid of scarring than of the birthmark itself.

The laser treatment was through the Shriners Burn Institute for Children. Unlike laser treatments today (as in-office visits), I flew out of state and was put under general anesthesia. It simply wasn't worth the time and toll on me physically and emotionally.

Actually, the worst experience of the few times I went for treatments was the first full-face treatment they did. I guess because I was still a child, even though I was sixteen, they felt it necessary to load me up not only with Aquaphor and cover the Port Wine Stain with gauze, but then to apply a netted mask around my entire head.

No one thought to give me a hat or scarf to shield me from onlookers' stares and comments. I got on the plane for the ride home, and someone wise-cracked that I was going to hijack the plane.

It was terrible. Terrible.

What did leave an impression on me for good was seeing others like myself, but with a sad and painful burn — and I just felt laser was such a waste of resources for me when these kids had faced real traumatic injuries. Nothing seemed to justify going anymore. The family isolated me from so much that most socializing with my birthmark happened in my adulthood, and I am still reeling from the cruelty that can be the world.

Well, anyway, call it what you will. One time, when asked, "what happened to your face?" I responded by saying, "it is how G-d made me." The person retorted,

"Don't say such an awful thing."

Another time I tried the opposite approach: "It's the mark of the beast." Needless to say, that didn't go over well, either. Now I either ignore questions or explain what the birthmark is before even being questioned, so I have the upper hand.

I accept my condition now. With five siblings and parents who were too poor and too religious to provide anything that would pamper me by covering up my face with makeup, I never did anything to hide the birthmark. That turned me into a "wash and go" adult with very little attention given to my looks.

But the condition has changed so that now, even with a basic acceptance of how I look, with age come new

challenges and hurdles to cross. I regularly develop blebs (raised bumps) which bleed. My skin is tougher and knottier now. Laser has helped with both issues — smoother skin and healthier skin — but I hate laser. Passionately. Done with it, truly.

It has, to my shame, taken far too long to accept others, because I never accepted myself.

But I am changing, learning, growing.

And I am making good and lasting friends with people who have Port Wine Stains and other facial differences. I've been challenged for the better. What a privilege now to have people who have things in common with me. I am not such an outcast as I once saw myself.

It's all going to be okay.