Like me, Maria has Netherton's Syndrome. We have been in contact via social media for more than two years, and she approached me to write for the Swedish Ichthyosis Magazine - my article is in the January 2013 issue. When I asked Maria to write a piece for the Ichthyosis Awareness Month, Maria told me she'd write about her love for dancing. In our exchange of messages, she wrote "Almost nothing can beat the feeling to be "hugged" by a (sometimes) total stranger, knowing thar I look the way I do and they don't care ❤". I knew exactly how she feels, and was desperate for her story. Her words are beautiful, and so is she.
"My name is Maria Sandström, I’m 30 years old and have a skin condition called Nethertons Syndrome. I live in a town called Sundsvall, on the east coast in the middle of Sweden.
My day always starts with a bath where I soak myself in oily water and then comb my scalp. After that I use Vaseline and zinc based salve before I’m ready to see what the day might bring. The whole procedure takes around 1½ hours, but it’s the most important time on the day. When I get home after work I usually take another bath just because I like it, it makes me feel more comfortable again. It’s lucky that I love my bath! Nethertons Syndrome can shortly be described as my skin produce a new skin layer each day, instead of one layer in a week on a “normal” person. My hair is also problematic, it looks like bamboo and breaks very easily so it’s not easy to find a good haircut.
My favorite thing to do on my spare time is to dance. I usually dance 2-3 times a month when there is a good band playing. I dance foxtrot and bugg (it’s a form of swing dance like lindy hop and boogie woogie), these are the classic dances when you dance out on the evenings in Sweden. You can see a glimpse of what I do here. It’s the band Dreams, playing on a big dance event this spring with around 1100 persons dancing 7 hour each night from Friday-Sunday and really enjoying their time on the floor.
There is a special feeling for me when I dance. As you can see on the youtube clip that I mentioned above, the dance can be very close and intimate. It can look very “wrong” for a person that never has seen this dance before. But it’s wonderful. The feeling when you dance close to another person and just become one with the music. The feeling when your and your partner’s bodies are moving together as one. It's mind blowing, especially if it is a slow dance. I find this feeling really special because of how I look. I’m very well aware of that I look different. When my skin is bad I get very red and my hair is also very short and hard to control. I know that it takes more of me if I want to dance with a new guy, or a girl for that sake. I can’t just play on my looks, I need something more to get a dance. So when I’m in the arms of a stranger that holds me tight and not cares about how I look as long as the dance moves on… Then I’m in heaven. I can forget that I look different and just be me. I don’t say that it’s easy to get a dance with a stranger, but when I do, the feeling is lovely.
To dance is for me to feel free and feminine in a way that I don’t do on an ordinary weekday. So to put on that glittery dress or a skirt and that colorful top is my way to feel beautiful and special on a different way than a ”normal” person with normal skin can do without an effort. Of course I know that it can be a problem to be a “normal” person to, but in today’s climate it’s not easy to look different and be able to handle it. People can be so mean without saying anything, a sharp look can make you want to flee the street, the bus or the bench that you are on. Make you just want to be invisible and melt in to the crowd. But I can’t. Many people say that I’m strong and tough, but inside I’m just that little insecure girl that just wishes to be loved for the one that I am. I guess I’m not the only one!?
So try to get out and dance, you’ll discover a new world, a lot of hugging and love. Wonderful music and new friends comes with the package!
Maria has explained the photos:
"The black and white photo is from a photoshoot - model for a day. A really wonderful day when I feelt very beautiful. The second photo is me and my boyfriend (since 8 years) Björn. The photo called: Maria och Stefan is of me and a dance friend called Stefan - he is one of those who has looked beyond my look and just dance with me because of me :)"
For Ichthyosis and appearance diversity resources, click here.