I have an incurable, genetic disease called Tuberous Sclerosis Complex (TSC). A spontaneous visit to the emergency room for “stomach pain” when I was 25 revealed a softball-size tumor, and MANY other smaller tumors on my kidneys. That is how I was diagnosed and where my journey of endless operations and doctors’ visits began.
Brain, heart, lung, kidneys, eyes, skin, arteries – like clockwork, I now recite this list of my organs and vessels that are affected. Over the past 5 years I have endured multiple kidney operations, had countless procedures, been poked and prodded, treated appallingly by doctors, called things like “a rare butterfly that needs to be added to a collection” (and worse), and survived the mental challenges of it all.
A few weeks ago, I received another blow below the belt: My doctor told me the kidney tumors have once again reached a critical size where action needs to be taken. Operations are much too risky in my case, because I am already missing large parts of both my kidneys and surgery could be fatal. So, the medication Everolimus was decided upon as a course of action. This medication thankfully inhibits tumor growth and also acts as an immunosuppressant (i.e. reduces the efficiency of your body’s immune system). In today’s Corona-ridden world I am being granted a year of grace period before treatment starts, since now more than ever I am in dire need of my immune system.
Even though it has many life-saving benefits, taking Everolimus next year concerns me. Like many medications it has some terrifying and sadly fairly common side effects (ranging for instance from UTIs and fever to pneumonia). My passion has always been to travel the world, living a life full of adventure and culture, encounters and nature. On an emotional level, I am fearful that that will become impossible from one day to the next once I start medication, which in this moment feels akin to someone taking away my dreams as well as my freedom.
Making the Most Out of the Cards I’ve Been Dealt
I have quit my job and am packing up my life and backpack as we speak to set out into the unknown. I’m embarking on a journey out into the world and back to myself, placing the focus on my health and well-being – and not my disease. I want to reconnect with my body, to once more feel what feels good, eat what I enjoy, sense what I need intuitively and gather strength from wherever I can. To relearn the messages my body is sending me, really listen, and in the process experience my life at its fullest. And maybe, if I am lucky, along the way, I will find some sense in all this. Hopefully, by helping others with my story. Turning my inward journey outwards in order support other people going through something similar. Becoming a voice of stability and positive mindset for those also wandering and seeking. If my path and the strength I have built over the past years can help only one other person who is struggling, then I will regard my idea to share as a success. And if I am able to travel the world with your help and support, then one of my biggest dreams will come true; and at the very least I will live one more year the way I intend to spend my life – free and happy.
And if, after all these words, you’re still finding it hard to understand why this is so urgent and important to me, and why I would “choose” a time like this to embark… Then, please, ask yourself: What would I do if I had only one more year to live my life exactly the way that I want, free of restraint?
How You Can Help
If you’re willing and able to help me, donations would be appreciated as soon as possible. You can find more information on this on my GoFundMe page. The quicker I can book a flight and go, the more time I will have to be out there doing what I love, before the reality of doctor’s visits catch up to me once more next year.
If you would like to support me in additional ways, I’d be ecstatic to welcome you as a follower on social media, where over the next year I will be sharing what I am up to and how my journey is going on Instagram & Facebook. If you would like to know more in the meantime, feel free to reach out to me via DMs on social!
Thank you for all of your kind thoughts, good vibes, and support. Words can’t describe how much it means to me and how grateful I am!