All I Want for Christmas Is Everything I Already Have

All I Want for Christmas Is Everything I Already Have
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When thinking of a topic for this column, I considered writing on a winter theme. But then, when I think of December, Christmas comes to mind, rather than the season’s cold weather.

Christmas for me is family and friends, drinking hot cocoa, wrapped in warm blankets, wearing fluffy socks, and listening to festive songs. It’s completing tasks before the holidays, slowing down, and reminiscing over the past year. Spending time with loved ones, being thankful for my blessings, celebrating accomplishments, and giving back to others. That’s what the season means to me.

I’m thankful to be surrounded by wonderful people and good vibes, while feeling supported, and hoping that I am helping others. I’m thankful for this year: in 2019 I graduated from university, traveled extensively, moved into a new apartment, and started writing my column for Epidermolysis Bullosa News. (Read my first and second columns). I am grateful that I am good and healthy.

Healthy? You might wonder why I say “healthy.” But I consider myself to be healthy. I have a condition, epidermolysis bullosa, that is permanently present. But it doesn’t mean that I am sick.

While looking at the good things about December, I should also consider the negative sides of winter. It’s not in my nature to view things negatively — I am mostly an optimistic person — but my sister reminded me to share some of the things about winter that make it hard for me when living with EB.

This is the first “full” winter I’m spending back home in Austria; in previous years, I was lucky to live in the south of Spain, so the full winter force didn’t hit me. But now I realize why living near the sea is best for me — that’s just a little hint for anyone who’d like to buy me a villa on the beach.

The cold, dry air is hard on my skin. During winter, I have to wear tight, warm clothes and cover all my wounds, which slows their healing. But, this is a season filled with anticipation, and after Christmas, I’ll be looking forward to the summer again.

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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.

My Name is Lena, I am 26 years old and was born with the rare, genetic skin condition Epidermolysis bullosa (EB). Those who live with EB are also called butterfly children. I work with DEBRA Austria, the organization that supports butterfly children in Austria and with another NGO which functions as an umbrella organization for rare diseases in Austria. I am a very outgoing, happy person. I love to be with family and friends, travel, sing, do sports, but I also enjoy being by myself, read, be creative. A few years ago, I was lucky enough to live in Spain, learn Spanish and fall in love with the country, the people and the language. I am a sun, beach and sea person and I love brunch. Writing is something that I love too, and with BioNews and my column The Girl with the Butterfly Tattoo I found the perfect way to combine doing something creative and finding a way to bring my thoughts and feelings into something I and others can better understand. And with every column I get closer to finding my true self and that is a very exciting adventure.
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My Name is Lena, I am 26 years old and was born with the rare, genetic skin condition Epidermolysis bullosa (EB). Those who live with EB are also called butterfly children. I work with DEBRA Austria, the organization that supports butterfly children in Austria and with another NGO which functions as an umbrella organization for rare diseases in Austria. I am a very outgoing, happy person. I love to be with family and friends, travel, sing, do sports, but I also enjoy being by myself, read, be creative. A few years ago, I was lucky enough to live in Spain, learn Spanish and fall in love with the country, the people and the language. I am a sun, beach and sea person and I love brunch. Writing is something that I love too, and with BioNews and my column The Girl with the Butterfly Tattoo I found the perfect way to combine doing something creative and finding a way to bring my thoughts and feelings into something I and others can better understand. And with every column I get closer to finding my true self and that is a very exciting adventure.
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