"How come your arms are all wrinkled up?" the little girl asks.
She's sitting at my kitchen table as her mother, a friend of mine, nearly spills her tea. My skin condition never came up in conversation before even though we've known each other for years. Her five-year-old's question embarrassed her and she showed fear over its possible offence.
"Well, my skin is fresh from the washing machine, but I forgot to iron it," I say. "Got too carried away with getting my nails done. Do you like the color? It matches the little gem in my ring," smiling as I show her my hands. They sure don't look pretty. I've got ichthyosis. It makes my skin look overly dry, scaly and cracked, darker than normal. Much like a snake's skin, but I suppose 'wrinkled' describes it too.
The Strange One
With the odds being one in 300,000, you could call me a lottery winner. My parents and daughter don't have this recessive genetic disorder although they carry the gene. On the day I was born my skin was red and tightly coated in a membrane; my lips and eyelids were everted.
Ichthyosis means that the skin cannot moisturize itself. During the summer I'm often on the verge of a heatstroke and in winter my palms and soles get cracked and infected. I spend enormous amounts of time on hygiene. After taking a shower my body aches all over much like a burn. I can't use make-up because of flaking and I can't wear dark clothes because of constant dandruff. When I reach out to shake someone's hand, people are often startled at the sight. Sex is an issue, too; there's no way of knowing how a new partner will react when he sees my naked body for the first time.
But ichthyosis comes with a silver lining. Scratches and cuts heal in just about half a day. My hair and nails are strong and grow fast. Not perspiring or having body odor, I never have to buy deodorant. And, no matter what or how much I eat, I never gain weight.
At times I view my disease as a prism that allows me to see the hidden side of life. People act strangely around me. Some say that my condition is not a big deal, thinking they're being supportive. Some try to ignore it, only emphasizing it. Some express interest in my life by asking lots of questions and then react like the answers are too much information. And some are genuinely sympathetic, but they don't know how to convey it. Only children, the simple-hearted beings that they are, always say what they think.
My country's healthcare system labels me as disabled, meaning that I'm an 'invalid', 'deformed', and 'flawed'. These labels are not me in any sense. Although I have 'special needs', I'm just an everyday person wishing to live in harmony with myself and the world around me, to be appreciated, loved and happy, to feel beautiful and healthy. There are ups and downs, a private life and a career to pursue, hobbies and plans for the future.
Yet, since my childhood I have been treated as someone abnormal wrapped with a 'message' that I must follow special rules on how to behave, how to dress, how to feel - how to be a proper cripple. Even people's behavior changes toward me, as if they are compelled to react.
When I Was Three
It's a perfect summer day and my Mom is pushing me around in my stroller. It's hot, but I'm wearing pants and a long-sleeved shirt. Occasionally, she pauses to brush flaking skin from my face. She does it lightly, matter-of-factly. I like it when she touches me. It makes me smile.
"Poor child! Look at that sunburn! What the hell are you thinking?" Two feet in weathered shoes stop in front of me. "You shouldn't be touching her face. Your hands aren't germproof you know!" The stranger continues her reproaches, "Geez, what kind of mother are you? She needs moisturizer! And she doesn't need sleeves, it's not winter, for Christ's sakes!" Still squatting over me, my Mom straightens up and gives a disconcerted response to the lady in old shoes. "Itchy-what-sis? Don't give me that! I know sunburn when I see it!" the stranger retorts. My Mom responds sharply. "All right, all right, I'm leaving," the woman cries out. "Gosh, you're so vulgar, no wonder you had an ugly child!"
I watch the lady stride off into the distance. Squatting down next to me again, her cheeks in a burning hue and tears in her eyes, my Mom murmurs, "You are my lovely princess, you hear me? The fairest of them all." As she strokes my hair, she continues, "Don't listen what the others tell you. They know nothing."
"Mommy, but can I take off the shirt? It's so hot!" I stretch out my arms toward her, hoping to be freed from the awful long sleeves. Looking around she says, "We shouldn't do that, dear. We shouldn't expose your skin to people's eyes."
When I Was Seven
A dozen kids are standing around in the school yard waiting to do a circle dance. Next to me is 10-year old Anna. As I reached for her hand, she retracted it and began to yank the sleeve of her shirt over her fingers. "I don't want to touch you... you're icky," she cried out. .
When I Was Thirteen
My girlfriends from the block and I are standing near my house waiting for the boys to join us. The latest gossip is that one of the boys wants to 'hang out' with me. Somebody has a crush on me! Isn't that amazing? I anxiously waited for this guy and when asked if it was true, his response was, "Are you nuts? Why would I want to hang out with someone so freaking scabby?"
When I Was Eighteen
I'm standing in line at the post office. People always stare at me since I stopped wearing long sleeve blouses and maxi skirts. I'm trying to guess which one will be the first to approach me with questions, the old lady on my left or the guy to my right. Probably the guy. I look at him, but he looks away. I turn and the old lady is in my face. "What happened to you?" she asks. "Is that a sunburn?" "No, it's a skin condition. And I don't want to talk about it, sorry." "Oh! Come on, honey, I just wanted to suggest you try elecampane. I guarantee that it will do the trick." "No, it won't. It's a hereditary skin disorder." 'You really oughtn't argue with people who are older and more experienced. I know what I'm talking about. Elecampane root extract is what you need. Just a teaspoon a day." "Excuse me, but I wasn't looking for advice," I counter back. "I'm only trying to help! Just listen to you. You know no respect."
When I Was Twenty-Three
After the divorce, I moved in with my Mom. I was depressed and afraid that I would never get through it. Trying to be helpful and supportive, my mother said to me, "Poor darling, you need to be good at so many things to compensate for your bad skin... Like being a good cook, and all that other stuff. When you've got no beauty to offer, you need to replace it with something competitive. God only knows what would make your husband stay..."
When I Was Twenty-Nine
I'm on my way to a TV talk show to participate in a conversation about people with rare health conditions. I'm all made-up and nicely dressed and even got my nails done. And I'm very excited. The director instructs me to stop smiling so much. "Remember, we're here to talk about your terrible sickness," he instructs me, "And be prepared to answer these questions: 'How does it feel when your skin is horribly flaking all over? And do you wear nail polish to hide the deformity of your nails?'"
For me this talk show was to exemplify to the audience how I have struggled but positively dealt with my health disorder. But instead, they edited and cut my words until it was a sensational freak show depicting how terribly sick and depressed I was.
It is a narcissistic world in which we live. Don't ever think you are worthy of love or beautiful or valued and accepted unless you are a perfect human specimen. People afflicted with health issues are very aware of this social pressure. Those who are a living reminder of human imperfection and vulnerability often feel uncomfortable because of the feelings their appearance ignites in others.
We don't need to be constantly reminded of our particularity, but we are: by the way people behave, by intrusive questions and unsolicited advice. Such encounters have been uncountable since my childhood and youth. And tough to handle; sometimes I would cry and run away, sometimes I tried to fight, or other times asked for help. At some point I gave up and gave my power to those who rejected me. I believed that no one would ever desire to be with me or love me, well, because I was just plain ugly.
Society taught me how to feel guilty and ashamed of my condition ... and to tell it "sorry". "Sorry" if I refused to fulfill someone's curiosity, "sorry" for the way I looked, "sorry" for people's negative emotions.
For years I had one dream... to get rid of THIS. The unbearable pressure from society caused me to believe that my disease is the only reason behind any of my problems. For years of depression and envy I desperately attempted to hide from myself. I covered my body, put on an artificial smile, and humbly, conveniently followed any rules society dictated to me.
But ichthyosis has been a good teacher for me about life. Stepping outside of the mental trauma placed upon me from people's ignorance and fear gave me insight and understanding of what people were actually trying to communicate. I began to view people's aggressive messages as the distorted perceptions of reality and realized that these distortions are their problem, not mine. There is no obligation to repeat the social pattern of not accepting me. I can change my position into love, acceptance and care. It took me over thirty years to get here. A long road and a very long lesson in becoming myself.
Now at 34, I no longer hide from the world. Neither do I feel guilty for having a disorder or for looking the way I do. This physical version of me is all I have ever known and I like it - a petite woman with a tiny waist and big blue eyes. Sure, my skin is affected, and there are some limitations to what I can do physically. But this doesn't define me. I am not my disorder. It has just made me who I am.
Now I know that every single piece of experience matters. Love, shame, joy, fear, vulnerability and pain. Being a certified psychotherapeutist, now every day I help others to find their own way. I wouldn't be able to make it this far if I was someone else.
It's 2012 and a sunny, summer day. I'm watching my daughter have fun in the sandpit at the playground. "Are you the Lizard Woman?" a little boy asks after quite a bit of staring at my hands and legs. "Yep," I respond, spreading my fingers apart and sticking my tongue out. The boy bursts into laughter. Relief showed upon his mother's face as she smiled at my humor. My humanness came forth rather than just a curious specimen.
"Why are you like this?" the boy asks as he grabs my hand to get a better look. "No special reason. It's just that all people are different," I answer. I stare into his thoughtful blue eyes. In my mind, I ask the Universe to help the little soul remember for the rest of his life.
Some are plump, and some are slim.
Some lack digits. Some have extra.
Some walk, and some move in a wheelchair.
All people are different.
That's what life is about.