With the End of Summer, I’m Starting A New Phase of My Life

With the End of Summer, I’m Starting A New Phase of My Life
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This is the first autumn I’m spending at home in Vienna after living in Marbella, Spain, for over a year. I was lucky to be in Spain for two summers — and when I say summer, I mean it starts in May and ends in November. But now I am back in Austria.

Summer ended on Sept. 1, almost as though it knew it was supposed to. I hoped I could spend my birthday month reminiscing about summer, but the weather is unpredictable, just like my constant companion, epidermolysis bullosa (EB). You never know what storm you’ll have to conquer next, which is what brought this topic to mind: summer with EB.

For me, summer with EB means freedom. Freedom because I can wear short, loose-fitting clothes. Freedom because I don’t have to cover every little wound and can let them get some fresh air. Freedom because I can hopefully spend some time at the beach and in the sea, which always seems to help my skin. Freedom because I can catch some sun and get a tan, which is good because tans mean my scars are less visible, less noticeable.

For me, summer means I’m happy and comfortable with myself.

Summer with EB also means that I am visible to others. I reveal my skin to the world. I can’t protect myself from stares. People on the beach look at me instead of the waves rolling back into the sea. I’m vulnerable, not only on the outside but on the inside as well.

My sister once told me that I should enjoy when people look at me. I should see it as a big appearance and the beach as my catwalk. I try to remember her words when I feel insecure.

It isn’t always easy. I have to find the courage again and again. But summer really is the best time of year for me.

Now that I’ve said goodbye to summer and university (I recently graduated from college), I start a new phase of my life. A phase that’s different and uncertain, with chances and adventures on the horizon. This column, “The Girl with the Butterfly Tattoo,” is just one of those exciting adventures.

I am happy and proud to share my experiences with all of you. Let me show you how life with EB, a rare skin condition, can look like. Let me take you on a journey.

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Note: Epidermolysis Bullosa News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Epidermolysis Bullosa News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to epidermolysis bullosa.

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3 comments

  1. Peter Rüf says:

    Amazing as always.
    Love the energy and positivity you deliver by writing about this topic.

    Bisous
    Don Piedro, formerly known as King of Ottakring

  2. Charito says:

    Guapa!

    I am so proud of you and I love the way you write and express yourself, well done! Brave but wise choice to start writing, you are very talented, you go girl!

    Please send me your news letters! Good luck and big hug

  3. Ritu says:

    Bravo, our Lena!! this is beautiful! The beach as your catwalk…what a lovely phrase. You’re a smart and sensitive woman and the EB world is blessed to have you. Let’s show the world the steel in those butterfly wings! Soar high!
    Love <3

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