Carlien Jansen

As a young girl, I always had one big dream, to provide vaccinations to children in Africa so they wouldn’t get sick. After high school, at the age of 17, I went on my own to South Africa, Ghana, and Tanzania for a year to do development aid. Upon returning home, I went to study nursing to fulfill my dream.

In 2017, I got the opportunity to do my graduate internship in a small primitive hospital in the interior of Tanzania. My dream came true, in my snow-white uniform I walked among colorful Tanzanians in an idyllic orange sandy landscape. I was indeed vaccinating children, but I also treated many different hospital patients, attended surgeries, and assisted a number of deliveries. With an open mind, I took on the adventure and loved it all.

Unfortunately, on 17 March, my long-cherished dream turned into a nightmare. Suddenly I fell seriously ill, I became unconscious and was admitted to the small hospital where I was working the day before. Unfortunately, due to insufficient medical facilities, they could not help me, and after 3 days I was flown by Flying Doctors to a well-developed hospital in Nairobi, Kenya. Here I spent some time in ICU and was diagnosed with meningitis/encephalitis. After weeks of recovery and rehabilitation, I was determined to complete my internship. Step by step, I started working some hours in the hospital again. Fortunately, the work pace and pressure is a lot lower than in the Netherlands. When I got home, I was exhausted and went straight to bed. We also lived in such a bubble there, there was little else we had to do apart from internship. Except for washing our white uniforms by hand. Miraculously, I passed my internship and graduated as an HBO nurse.

Of course, I had been very aware all those months that something had changed in my head, but I hardly dared to show it. I was extremely tired, always had headaches, word-finding problems, and simply thinking took a lot of effort. Because of visual problems, I had trouble reading and keeping an overview. In addition, I was constantly dizzy and nauseous due to impaired balance. Despite being so incredibly tired, I suffered from insomnia.

While working in the hospital, I received many patients with meningitis or encephalitis. Adults but also many (young) children. Due to limited resources and financial barriers, many could not be treated. Seeing these patients die when I knew these options were available a few hundred kilometres away was tough. Some luckily survived, but rehabilitation? They don’t know that in that region. When I grumble about Dutch care, I think back to that a lot, and feel a wave of gratitude and humility wash over me.

Once I returned home to the Netherlands, I couldn’t keep up appearances. My family and friends immediately realised something was seriously wrong, and then the whole medical mill started turning. MRI scans, lumbar puncture, many hospitals, tests, and different doctors. Diagnosis: non-congenital brain injury. I was reported to a rehabilitation centre, but during the intake interview I was immediately told that the time for spontaneous recovery was already over, so I was mainly going to learn to live with my limitations.

I was declared completely disabled for the rest of my life. I went through the rehabilitation programme for seven months but did not achieve any of my predetermined goals. Then I sat, as a 25-year-old adventurous and ambitious woman, at home on the couch living the life of a senior citizen. I felt hugely left to my own devices.

In July 2019, I attended Cognitive FX in Utah and this has been the stepping stone to recovery for me. Finally fighting for neuroplasticity, instead of just putting up with it and applying compensation strategies. A period of several new treatments broke out, each adding something to my recovery. One was Surf Therapy.

My balance was extremely poor, due to vestibular problems I was constantly seasick. By far, I found this the most enjoyable therapy of all, I finally felt like I was alive again! I slowly started surviving daily life and had energy left over to start living again.

But where do you start? I became a participant of The Class of The Brain Foundation (then known as the Edwin van der Sar Foundation). A reintegration course for young adults with NAH, focusing on work and exercise. I was lucky, my sports coach was a bruising surfer from Scheveningen. So you guessed it, in winter I was on a surfboard in the cold North Sea. I loved it! The waves, the cold salt water, the wide horizon, the playing and the spaciousness of the beach had a healing effect on me. In fact, every week I wanted nothing more than to surf. Whereas, in the beginning, it took me an awful lot of energy, I was constantly rolling off that board and getting dizzy and nauseous from the swaying of the sea. However, with building up and exercises, this got better and better. Physically, I was making great strides, but mentally, too, there was a turnaround. I regained the adventurous Carlien a bit, but at the same time I also learned to embrace my new version.

At the same time at De Class I was also investigating what I wanted and what my possibilities were in terms of work. One thing had become clear to me: I was happy on the beach. So I wanted to spend a lot of time there. I signed up as a volunteer with the Surf Therapy Foundation. They give surf lessons as a hobby for people after their rehabilitation. I enjoyed it, got a lot of satisfaction out of it and my self-confidence got a huge boost.

”Nobody holds the waves, but you can learn to stand, nobody holds them back, but you can handle them, watch you go” from Diggy Dex’s song Waves became my new motto.

Wonderful opportunities came my way, for example, I spoke at the global congress of The International Surftherapy Organisations, I organised the National Adapted Surfing Championships and, as a coach, I went with them twice to California for The World Championship Para Surfing (including together with Britt, an ItsME fellow sufferer). A year ago, the rehabilitation centre Zelfzorg aan Zee was founded by neuro rehabilitation doctor Tijs van Bezeij. He asked me if I would like to work here as an expert by experience, and so my new ‘purpose’ was born. My own experience with the therapeutic value of surfing, and with living with brain injury, I could combine nicely here. I did the experiential therapist training and dove right into the influence of the sea on our brain. I could talk about this for hours, so I won’t bother you with that now, but if you are interested in it know where to find me.

Fortunately, I can now call this new passion my work. At self-care by the sea, we go on the beach and into the sea with an interdisciplinary team to work on neurological recovery. In the rehabilitation programme, participants (with NAH & lung covid, among others) take on challenges and discover new possibilities. It gives me immense satisfaction to see that through self-care at sea, participants regain a grip on their lives.

Of course, I still regularly miss the old Carlien, but it is never too late to rewrite your dream. I wish the same for you because a lot is still possible!

Speaking of rewriting dreams: I'm in the middle of writing my book!