I have reflected, written, and rewritten this first Comfort Measures blog entry too many times to count. How do I introduce myself to the world, share my knowledge, experiences and opinions while maintaining a focus on helping children and young adults? How do I describe the way my life choices and sense of identity have been influenced by my skin condition without appearing as if I’m obsessed with it? How do I avoid being defined by others solely by it? How do I provide an interesting blog photo that is appropriate for all potential audiences and my professional persona, when I’m revealing something so personal as the naked skin I’m in? How do I convey the conflicting feelings that my condition is special, weird, cool, and at the same time, not that big a deal? How do I know that the combination of a medical education and a lifetime as a person with a rare skin condition associated with vivid, often sad, secret memories gives me something to say that young people and their parents want to hear?
I can only hope for the best. I have been unpacking and repacking my emotional baggage and now I’m inviting you on a collective journey, a conversation. One of the life lessons I’d like to share and explore with you is how to avoid worrying so much about what other people think of you, so I need to set an example here, right? If we act with positivity, integrity and conviction, the universe will react accordingly – most of the time…
So here goes, a preface to the story that is mine and can become ours:
When I was a kid I read a lot of fantasy and science fiction. I loved Ray Bradbury and Star Trek, maybe because the world I didn’t always fit into didn’t matter when I was exploring other worlds and times. Ray Bradbury wrote a collection of short stories called The Illustrated Man that remains a favorite of mine. The Man’s skin was literally illustrated with beautiful, animated scenes. It was magical. The Man said a witch tattooed him that way, and he felt cursed by it. What people saw in his skin ultimately made them sad, angry and afraid. He told the narrator of the book, “…I’d like to burn them off. I’ve tried sandpaper, acid, a knife…”
You don’t see multiple colors, faces and moving pictures in my skin, but my skin tells stories too. It’s a soft, lavender watercolor, as if a sponge were dipped in my favorite color and blotted along my right big toe, all the way up my foot and leg, then around my torso like a hug. The part that isn’t obviously stained looks purplish too when I’m cold, due to something called physiologic cutis marmorata. So my whole body is a mood ring that changes color and intensity as my temperature and blood pressure change, but as for the Illustrated Man, if I close my eyes I can’t feel a thing. Some parts turn pink or fade completely when I’m warm. It’s almost magical. Many babies have angel kisses that look something like this, but they fade away with time. Had an angel left a huge, permanent mark on me, as if to say I should never forget her? Was it a blessing, not a curse?
All the things the Illustrated Man tried on his skin are crude versions of historical methods used to try to lighten or remove tattoos and vascular birthmarks similar to mine. Tattoos themselves were used to try to cover port wine stains. Until dermatologic pulsed dye lasers were developed (when I was already a teen), those were the only ways people could change the marks, essentially trading them in for scars or colored camouflage.
My skin story includes laser spots over my abdomen from when I participated in a clinical trial, and test spots on my knee that discouraged me from pursuing further treatment. I’ll tell you more about this another time. My body is also slightly asymmetrical, especially my legs, which frustrated me more than the stain many people think is eczema or some other temporary rash. Now my colleagues and I have named the condition diffuse capillary malformation with overgrowth (DCMO), and part of my mission is to further define it and provide support to others who have it – even though when I first arrived at Children’s I had no idea it was worth studying. That’s another story for another time. When I see what a benign condition it is compared to what some patients have at Boston Children’s, or how mild my overgrowth is compared to others with DCMO, I feel very lucky.
When I was growing up there was no support group for me, no one to tell me I was not alone – and no one early on who told me I was beautiful in spite of it or even because of it. This is partly why Comfortable In Our Skin doesn’t focus on a diagnosis like other support groups. This is also why I look to empathize with all people, but especially those in any situation that can be obviously alienating, including differences due to race, mental or physical ability, physical and psychological gender issues, and sexual orientation. We are all human beings, and differences deserve to be celebrated, not denigrated – as long as you’re not hurting others. (Sorry pedophiles and sociopaths, my empathy has limits.)
I learned to joke that people pay in money and pain for tattoos like the Illustrated Man’s, but my “body art” came for free. Honestly, I don’t think about it at all most of the time. I didn’t become a dermatologist because of it, I only became interested in dermatology because of it, but either way, it’s a fabulous outcome because I love what I do. Over the years I realized that I can and must do more. I’m sharing my story now because every hurt, every achievement, and many seemingly random events have been urging me to do so. Come back for more of these stories, and share your own! This is how our collective story can begin.
So here I am, the Illustrated Woman. If I can help you see your true beauty and reach your full potential in life, I am ever more grateful to have been granted this special skin. But unlike the Illustrated Man, I can’t tell your future, and what you see in me and in this website is up to you.