How my sickeness made me start my own non-profit organisation

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“You won’t make it to thirty.”
I am twenty eight and time is running out.
After a long period of tests, false diagnoses and uncertainty, I was diagnosed with a rare disease at the age of fourteen: AVM. A what?! An ‘Extreme AVM’. Say what? An extreme arteriove-nous malformation in the subclavian artery. Excuse me? A rare malformation of the artery and veins, with no capillaries in bet-ween. Of a worldwide unprecedented size.

The consequences are incalculable. In the meantime, the mon-ster has taken over the entire upper left side of my body, from my chest to my shoulder blade, in between all ribs, muscular tissue, and skin layers. Oxygenated blood and deoxygenated blood bump into each other. One and a half liter of blood con-stantly stands still in my body and creates an unbearable pres-sure and pain from the inside out. Almost invisible from the out-side, but so destructive within.

Monster
Up until the age of twenty three I ‘only’ underwent three surge-ries and I was able to lead a fairly normal life. Pain was always there. But I could still handle it all, with a pain killer on the sly. However, wrong treatment was causing my tumor monster to grow. I turned my back on the first hospita and went to find a new team on my own. Fresh confidence. A fresh start. I ended up at UZA (Universitair Ziekenhuis Antwerpen) and that’s when the ball started rolling. It’s still rolling. At the speed of lightning. I’ve forgotten how many surgeries I’ve had. In 2016 alone I’ve had three.

Band-aid solution
The surgeries. The temporary band-aid solutions - because the-re aren’t any permanent solutions for my disease. Because vascular experts don’t know what to do. Because I’m a very tough nut to crack. Because there aren’t any studies. Because there aren’t enough people like me. Because I shouldn't have been born in the first place. But I am here. And so is my mon-ster. Where amputation serves as the final rescue for others, that is of course not an option in my case. Because of the loca-tion ánd size of the AVM.

This is why my medical files travel all over the world, with my doctor, as well as with other doctors who reach out to my at their own initiative. Because one day, (temporarily) gluing the veins and arteries shut will be too risky. Let alone what it does to me, in all aspects of my life. One surgery after another, kno-wing full well that it will never stop. Until it stops - because my body is giving up or because of me signing a paper. Or becau-se the source of money for the glue has dried up.

Awareness
This monster is trying to stop me. All the while, I’m chasing dreams. My limitations steadily grow. Possibilities decline. My body is unpredictable - so I live from day to day.

I do not want to stand still and watch life pass me by. I want to be in that life - But no matter what, there is no getting around that monster. With my book, I see an opportunity to turn the impact of my chronic illness and pain into something posi-tive. For me, but for you as well. Whether you’re sick or not. Awareness is the key to more understanding and commitment.

The girl
I’m a young woman full of fire, passion, and desires. I’m a figh-ter. And I keep on chasing my dreams. I’m a psychologist, an-thropologist, and teacher. I’m a traveller. I’m a writer and a tal-ker. And I want to tell the world my story. I’m a daughter, a sis-ter and a friend to many. I’m a mother without children. And I’m sick. I don’t know what it’s like to wake up without pain. And I don’t have a clue what it’s like to go to bed without pain.

Can you imagine that? Can you imagine that this is and always will be my life, as long as no one has the desire, the interest or the budget to research this disease?
And do you realize how lucky you are?
The obstacles on my path don’t stop me. On the contrary, they make me grow. The monster makes me live more intensely. And I want to share that with you. Because I’m still here. And I’m going to stick around for a while.

Love
Monster and the Girl
Eefje