Moving forward with a new home, job, and chance to be proud
New adventures lie in store for this columnist
As we settle into 2023, I’m thinking about my usual preference to remain in my comfort zone rather than taking risks. I have always been afraid of change, but this time, I’ve decided to leave excuses behind. Life has presented me so many opportunities, and my gut told me recently to “Just do it!” I needed to “jump into cold waters,” as we say in German.
The months of December and January were exciting. In that time, I moved to my own flat. I have lived apart from my family before, but I had always shared apartments. Now it’s time for my dog, Nala, and me to build our own castle.
It was both emotionally and physically exhausting, but also exciting. Imagine carrying everything in your life up three flights of stairs and moving into a new neighborhood. Now I need to find new favorite routes to walk with Nala. I hope I can find a nice cafe where I can get fresh pastries on the weekends. The good thing is, one of my best friends also moved into the area a few months ago.
I also started a new job in February. I think you can imagine why life has been an emotional roller coaster for me lately.
I came to a realization
This is the first time I am completely living independently. Of course, I know my family and friends are only a phone call away, and they don’t live far away, either. But when I come home after work, it’s just Nala and me.
I’d like to reminisce a bit: I think many people in my life never thought that this would be possible. Especially when I was younger.
I was born this way
I was born with a rare skin condition called epidermolysis bullosa (EB). There are different types of EB, and I live with a milder form called dystrophic EB. This means that my skin is very fragile and sensitive to friction. I get blisters and wounds easily — they are my everyday companions.
When I was a kid, I constantly needed help with skin care and wound management. It took several hours a day to do the dressing changes. I am used to pain and had to learn my body’s boundaries early on. Looking back, I think it is amazing that today I am able to live by myself, without needing anyone to take care of my body. I’m proud of that.
My body and I are a good team
My body and I do so many exciting things together. I was at my previous job for over 10 years, so having a new one is a big change for me. It’s almost like starting over.
As a patient representative, EB had always been a main focus of my work. But my new job is the first time I’m not primarily focused on EB when I work. I will use what I have learned from living with a rare condition when it’s relevant, but I don’t have to define myself or my assignments according to the condition.
The next few weeks and months will bring new situations, opportunities to learn, and unique challenges, but I’m ready. I’m so excited for what’s to come, and for the chance to get to know my new neighborhood, my new team, and my new me. I want to be even prouder of myself than I am now.
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, and are intended to spark discussion about issues pertaining to epidermolysis bullosa.