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“There comes a point when you don’t want to be different. You get tired of leaving school early to go to physical therapy, or having to consider if another surgery will truly make a difference. You start to think ‘I just want to be normal’.”
Jessica van der Merwe was 18 months old when she was diagnosed with spastic cerebral palsy (CP) which limits movement due to muscle stiffness and spasms. Now, the Somerset West resident shares her experience with CP in her self-published book, Broken and Beautiful.
As one half of a twin Jessica was put into mainstream schooling by her teacher mother. She matriculated from Rhenish Girls’ High School where she has returned as a substitute teacher this year.
“By matric everyone here knew I had CP and was accommodating, but it gave me a false sense of security. When I started at Stellenbosch University I had to explain my condition all over again. It also makes dating hard because how much do you tell your date upfront?” she asks.
These experiences, big and small, are what the 24-year-old covers in Broken and Beautiful, which she started writing last December.
Jessica was busy with her masters in linguistics when she joined a Facebook group for parents who had children with CP. In hopes of finding more participants for her masters’ research, she found parents with concerns, looking for advice, or who simply needed a sounding board for their daily struggles.
“I realised I had many of the answers they needed. I could provide insight into what my mom did for me when I was struggling at school, but could also tell them how difficult it was and that sometimes we just want to be treated as ‘normal’,” she says.
Jessica was recently hospitalised with a superbug, which wasn’t properly treated because of her CP. She explains it can be difficult to differentiate between symptoms of an illness and what are simply her everyday CP challenges. “When I was in and out of hospital, I felt that the doctors were not listening to me. I got so irritated,” she says.
Learning how to advocate for herself is also a skill Jessica has acquired. Physical therapists, doctors, surgeons have been part of her life as long as she can remember. “It was difficult to be different. If you have a disability you already feel ‘othered’. At age three our school had a play were I was suppose to be a mermaid but at the time I had just had surgery and was in a cast. I just wanted to be a mermaid.”
Despite her physical challenges Jessica’s parents’ advice was simple – do what you want and if anything breaks, we’ll have it fixed. “I wanted to play hockey but you need coordination, which was made difficult by the CP. I wasn’t very good and no-one wanted me on their team, but I tried.”
This no holds barred outlook on life has served Jessica well. She has been parasailing in Thailand, has learned to drive and keeps up with her four dogs.
“I was lucky with my sister, and simply did everything she did. My doctors told my mom I wouldn’t be able to walk or ride a bike, but at six I told my parents to take off my training wheels and push me down the hill because I was ready to go.”
Jessica has seen the affects of parents bubble-wrapping their disabled children and believes when people with CP are constantly being told they cannot do things, they begin to believe it.
With her book, which she illustrated herself, she hopes to inspire others to make the most of life. “In my teenage years I would have loved this book and it would have been helpful. I hope the book gives parents insight to their children and also aids people with disabilities to see this life can be a different kind of normal for someone else, because that is what the Facebook group did for me.”
