My birthmark has absolutely affected who I am today. I can honestly say it has granted me with a compassionate heart and, as a friend recently expressed, a graceful nature. I don’t think I would be working in the special needs community if I didn’t have my birthmark. I feel a kinship towards people with differences. It’s not difficult for me to empathize with their struggles. The most important thing for all people is to feel loved and accepted. And that is something I hope I can always give to others.

Editor’s note: Billy is the nephew of Dr. Larry Roff, pastor of First Presbyterian Church in Schenectady, N.Y.

One of the proudest moments of my life involves my birthmark. It happened while I was in high school, after I had gone through a series of laser surgeries with hopes of actually removing it. The unfortunate side effects of these treatments leave visible bruises that last a few weeks. Walking through the halls, I found myself to be in a relentless, unwanted spotlight. So many stares and whispers created a barrier between me and my schoolmates. It was frustrating and so disheartening. I wanted people to know that I was approachable, that I wouldn’t get my feelings hurt or get angry at whatever question was asked. My high school had an assembly every morning where students and faculty announced the latest activities and academic current events related to school. One morning, I got the courage to stand in front of the entire high school and explain why I looked the way I did. I remember closing with “Because staring doesn’t answer questions”. I can’t deny that the applause felt incredible. I was so very proud of myself for being open in front of everyone.

In 1978, I was born in Miami, Florida to a loving family. I am the third of four incredibly supportive siblings and I have a vascular birthmark which is also known as a port wine stain.

When I was just a few days old and still in the hospital, a neurologist flew in from somewhere to observe and run tests on me. Apparently, he was convinced that I would inevitably have seizures and possibly cognitive difficulties. He was insistent that I be immediately placed on anti-seizure medication, but my parents refused, and thankfully so, as I’ve never had one. My parents still believe that ego clouded this doctor’s judgment.

I was diagnosed as having Sturge-Weber syndrome, but without the neurological symptoms. Before the many (50+) laser surgeries I’ve had over the years, my birthmark was more purple. Now, it’s a pinkish red.

The vision in my right eye is significantly weaker than my left. Fortunately, my left eye has compensated with a 20/10 reading. My birthmark has caused glaucoma in my right eye. It’s a constant blur with almost a layer of noise over everything. I’ve had two surgeries for treating glaucoma – one as an infant, when I was seven days old and the other when I was about 12. My pediatrician at the time knew I may have pressure problems in my eye due to increased intraocular fluid and immediately had my parents consult with a pediatric ophthalmologist. My second surgery created a drainage channel in my eye to relieve pressure. During the surgery, my retina detached and there was a potential for permanent blindness. Thankfully, the surgeons were able to reattach it. Although surgery is scary at a young age, I most feared the anti-scarring injections. They involved keeping my eyelid open for several minutes as a needle slowly injected the serum into my already sore eyeball. Fortunately, my glaucoma is now under control and I routinely have it checked out.

I’m not certain how deep my birthmark goes, but according to my childhood doctors, there is extra blood flow on the right side of my brain and there is mild speculation amongst my family and friends that this is the source of my creativity; I’ve always felt the urge to make things, to bring my interests to life. Who knows if it’s true, but it’s a somewhat beautiful notion that my ideas and thoughts are getting extra nourishment.

As a child, I lived a moderately affluent life. We had a nice house with a swimming pool, attended private schools and never went without anything. I was a happy kid with a strong imagination. If I wasn’t drawing monsters, I was outside catching lizards and snakes. I had a good amount of friends and always enjoyed their company, but I think I was most content when alone with my thoughts and creativity.

When I was 13, we lost everything. My magical childhood came crashing down and we had to move to North Carolina. Not only did we move to a different house, but it was a move into a friends’ house. This was a difficult time, a humbling time. My world changed. My adolescent self became aware. I had changed schools five years in a row and it often became exhausting, not just being the shortest kid in school, but the shortest kid with a birthmark on his face. It’s not that I was bullied all the time (on the contrary I made many awesome friends), but there was a daily reminder that I wasn’t one of the normal kids. In order to avoid being just “that kid with the birthmark”, I would use my drawing skills to impress my classmates and have that be my identifier. Over time, I became regarded as the creative or talented one and this worked well for me.

The summer I started the 5th grade (in the late 80’s) I also started my laser treatments. My uncle found an article in Time magazine showcasing the new laser technology. Interestingly enough, the issue was dated on my birthday. He had passed it aIong to my parents and eventually it was decided that I would try out the new surgery. In the beginning, these treatments were simply for cosmetic reasons as I was rapidly closing in on the trying middle school years.

I wasn’t sure what to expect. I think I knew it would be painful, but I was fine with that. I’ve got a pretty high pain threshold. I don’t remember much about the first treatment other than my doctor zapping my arm to give me an idea of how it would feel. I’ve always equated the sensation with a rubber band snap coupled with a bee sting. Painful, yet tolerable. My body always jumped with each ‘zap’. My lips and nostrils were always the most sensitive.

The laser works by emitting an exact frequency of light from a metal wand-like apparatus. The light then targets the excess blood vessels in the birthmark, essentially cooking them and ultimately destroying them – hence the bruising. After each surgery, I was left with polka-dotted bruises on my face. On the laser machine itself, there is a counter that calculates how many zaps have been administered. When I first began these treatments, the laser left a much smaller bruising dot. The smaller the dots, the more are needed. Back then, it was roughly 900 zaps – so 900 tiny bruises. As the laser technology advanced over the years, each treatment went more quickly, but the bruising and swelling was a bit more severe. Now, the laser diameter is much bigger and leaves larger bruises – a little under 100. These large bruises do a number on my face and keep me swollen for several days.

As a teenager, I had these treatments every three months for several years but stopped going for a while when I was in college. It just seemed like a never-ending ordeal. There was an obvious lightening of my birthmark and even a complete disappearance on my neck, but it took so much out of me with each visit. Having the bruises and a swollen face for several weeks post treatment was the most difficult part of the experience. It gets exhausting to have to explain the surgery, to preface the explanation with addressing my birthmark, and often feeling the need to give unwarranted justification as to why I would put myself through it. Anyway, I spent several years without getting a single treatment. During this time, I noticed a darkening and some regrowth of my port wine stain where it once was removed. I also started developing a few small growths that bled very easily. This was a really disheartening time. I had never felt ugly before, never felt like I was gross, but these feelings began to surface. Knowing that there is a high chance for further regrowth was earth-shattering. Throughout these years, I researched more about birthmarks and how they age. I came across the ‘cobblestone effect’ where over time without treatment, a Port Wine Stain can become darker, and thicker and develop bumps and ridges. I couldn’t let that happen so I began the treatments again. I’ve had about 25 treatments since starting again. Unfortunately, it has left a bit of scarring, but I figure it’s best to have maintenance on my birthmark and keep its aging inevitability in check.

I’m still learning about birthmarks and there are so many things people don’t know about them. For instance, my birthmark tends to feel puffier in the summer than any other time of year. I have more nosebleeds too. It gets so hot and humid in Greensboro during the summer and that’s when I become a human faucet. There are many nights when I’m walking around the house with a tissue hanging out of my right nostril. I do get nosebleeds in the winter time, too, but it’s often associated with the heat being on and drying out my nose. Having a scab in your nose is unpleasant enough, but reopening the same month long nosebleed with a sneeze or a scratch is incredibly annoying!

About a decade ago, while I was in school down in Florida, I stopped in a convenience store and at the counter, a sweet little Indian woman asked me if what was on my face was a birthmark. I told her it was and she told me that in her culture I am considered very lucky. I had never associated having a facial birthmark with good fortune so that was a very memorable encounter to hold on to. Several years later, I was working at an advertising company and often ate at a family-owned Indian restaurant during lunch. I had the same waitress each time I went. She was about my age, charming, and often flirty. Her family always treated me with kindness and generosity. Each time it almost felt like a hopeful setup on their part. One day, not long after Emily and I started dating, I invited her to meet me at the restaurant. Almost immediately the vibe was totally different. The sweetness ended. Seeing as how I was not alone, I was now just another customer. Emily and I still joke that by marrying me she ruined potential good fortune for that family!

A few years ago, as I was reading the menu that hung from the ceiling of a coffee shop, I heard “Can I help you?” I looked down and locked eyes with a girl that had the exact same birthmark as me – same size, color and shape. There was a moment of silent recognition. As if she and I shared a secret. She and I knew what we’d gone through without having to say a word. I found comfort in knowing someone like me was out there. That was a pretty special experience.

Since I was newborn, my parents have treated me just like any other kid. I was never held back, or hidden from view. They respected my independence, let me shine when I was comfortable and believed that I could fight my own battles even when I didn’t. My birthmark has always been a non-issue with Emily too. Since we met, she’s barely even noticed it. The only time it’s apparent is when people point it out in public. She shares the burden and I know she feels what I feel. Emily has admitted to me that she’s felt like an enraged animal when she notices people staring and wants to “kick their asses SO BAD!!” She is a wonderfully compassionate woman and I love her for that.

These days, it’s up to me to keep an attitude of approachability and confidence. It can be draining, though. Large crowds can be especially hard. I almost feel a sense of nakedness. It’s a tangible vulnerability that never completely goes away. I’ve noticed more and more that strangers often find it difficult to maintain eye contact with me. That can be a frustrating reminder of my difference, but I’ve grown used to it.

My birthmark has absolutely affected who I am today. I can honestly say it has granted me with a compassionate heart and, as a friend recently expressed, a graceful nature. I don’t think I would be working in the special needs community if I didn’t have my birthmark. I feel a kinship towards people with differences. It’s not difficult for me to empathize with their struggles. The most important thing for all people is to feel loved and accepted. And that is something I hope I can always give to others.

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