Just give up – and set new goals for yourself

Essay by Sven Marx

It is not easy to live with two life-threatening medical diagnoses. My advice to everybody who is diagnosed with a life-changing disease: just give up! By that I don’t mean to give up on yourself but give up on your old life.

Before I was operated on my brainstem in 2009, my life was all about travelling, motorcycling and the underwater world. I was living at the Red Sea in Egypt. I was a diving instructor and my wife was the dive centre manager. We lived in paradise.

My brain tumour’s location was highly inconvenient and only half of it could be removed. It took only two days before I went into emergency surgery and on to the downward slide. My full life was over. After three months in intensive care, the doctors were sure that I would be dependent on care for the rest of my life and never travel again.

My hemiplegia slowly improved during early rehabilitation. After three months, I was able to move around using a walking frame, albeit rather poorly. I was still in rehabilitation when I started insisting that I wanted to learn to swim and ride a bike. My goal was to develop some easy methods to rebuild my musculature for when I was on my own.

I began fighting for every mile. I wasn’t bedridden anymore but still severely handicapped. I had double vision, no spacial vision, balance problems, and I got frequent and strong coughing fits because my swallowing reflex didn’t work.

After a year, I could manage longer distances. My bike was my cane, my loyal companion. I still keep it very close today. When I was planning my first tour in 2011, I received another shocking diagnosis: malignant melanoma. I needed surgery again.

According to common wisdom, this should have broken me. But I did not give up. I am happy about every day that I can open my eyes and marvel at the wonders this world has to offer. There are dreadful things, too. But either a glass is half-full, or it is already half-empty.

To give hope to other people, many people who are close to me suggested I start a website and share the story about my eventful life with a handicap. I frequently encountered barriers in people’s minds. Not many people with handicaps can disconnect from their old life and strive to achieve new goals. Many “healthy” people don’t believe that a handicapped person is capable of fitness. I started giving talks and writing a book about my story to prove them wrong.

In 2012, I decided that, if reach 50, I would go around the world on a bike. I went on several shorter journeys to prepare myself. By short I mean tours of up to about 4,000 kilometres. I went down the Route 66 in the US, rode from the Urals to the North Cape and back to Berlin, and I took my bike over the alps to Rome.

I started supporting projects that are committed to inclusion, bringing together people with disabilities with non-disabled people. During a awareness bike tour in 2015 as part of the “Inclusion Needs Action” project, I got a special audience with the pope and shook his hand. Karl Grandt and I carried the torch of inclusion to him for blessing on behalf of the “Inclusion Network Germany”.

I turned 50 last year and completed my 17-month world bike tour in September. My goal on this 32,000-kilometre tour was to show that there is always a reason to fight. Go outside and live.

Sven Marx lives in Berlin, gives talks, blogs about his life and promotes inclusion.