Good news

  • Author: Catherine
  • Categories: My story, News
  • Date: Oct 29,2015

I am a Huffington Post blogger now! :)

Enjoy your reading here (right-click on the link or screenshot)

Original version of the post (Russian language) is here. It was published in Cosmopolitan Russia in Feb 2013.

The Lizard Woman

  • Author: Catherine
  • Categories: My story
  • Date: Oct 12,2015

“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.

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