“I could only blink my eyes.” At just 27 years old, in 1996, Marjan was diagnosed with a skull base chordoma. Her journey took a devastating turn after her third surgery in 2001 when she sneezed, causing a tear in her meninges and leading to meningitis. During the recovery surgery, a brain hemorrhage resulted in even more severe complications. Marjan spent three weeks in a coma, and when she woke up, she was completely paralyzed—unable to do anything except blink her eyes. After a challenging period of rehabilitation at the nursing home “Het Zonnehuis” in Zuidhorn, Marjan began to make small but significant progress. She was then transferred to Rehabilitation Friesland in Beetsterzwaag, where her recovery continued.
Fighter's mentality It took months for Marjan to fully grasp what had happened. Doctors told her she would never walk or talk again. Marjan recalls, “I thought, we will see about that. I was thirty-two and a mother of two small children. No way I would just give up”. Marjan's recovery continued, miraculously for someone with Locked in Syndrome. “I can now dress myself with one hand, do laundry, cook and can go to the toilet by myself again. With the help of a special walker, I can walk a little in the house and also talk somewhat again, although not everyone understands me right away.”
Turning creativity into strength “At Rehabilitation Friesland I learned how to become self-reliant again after months of being dependent on others.” Despite being told that all her efforts were pointless because Locked-In Syndrome is considered irreparable, she refused to stop trying.
“To be able to express my feelings though, I started 'fiddling' with fabric and chalk. I was always creative and now that has become even more intense,” explains Marjan. Today, Marjan produces vibrant works of art using fabric and acrylic paint. Her unique style, marked by bold and intense colors, is partly due to her poor eyesight. As she jokes, “because I'm a pretty loud person myself.” Marjan draws inspiration from her cats, often portraying them in bright, cheerful hues. “I was told by my mother that my work had to look like something. My cats are often my inspiration. I also portray them mostly in bright colors. White makes me feel like I could explode,” Marjan jokes.
Words of encouragement Throughout her journey, Marjan’s husband, Jetze, has always supported her. She shares this message for others facing similar challenges: “Keep practicing, keep going, despite what anyone says to you. Chordoma is not the end but the beginning!”
Marjan is grateful for the support and resources now available through the Chordoma Foundation. “Thirty years ago, there was nothing like this. You were completely on your own,” she reflects. Today, Marjan’s resilience and determination stand as a testament to the power of perseverance and the human spirit.