Jess van der Merwe (24) has always had a way with words. When she was a toddler and still struggling to speak, she told people she suffers from “terrible palsy". As she grew up and came to terms with living with cerebral palsy, the irony of her childhood mispronunciation has not been lost on the budding writer.
Jess, who is completing a master's degree in linguistics at Stellenbosch University (SU), recently published an autobiography called Broken and Beautiful.
The book is a poignant and witty exploration of her struggles with cerebral palsy and how she learnt to take control of her life, advocate for herself and find strength in accepting help from others. It's also a coming-of-age story of a feisty young women whose many near-death experiences have given her wisdom beyond her years, complemented by quirky resilience.
At first glance, there is nothing wrong with the petite young woman who exudes confidence and humour. But there is a downside to looking normal, Jessica points out as she relays how her book, which she illustrated herself, came about.
“I'm not disabled enough to be disabled, but I'm also not normal enough to be normal," she explains. Occasionally people who meet her overcompensate and assume she can't do anything by herself. Others question why she gets preferential treatment such as parking for disabled people or extra time for writing exams. It's this frustration to convey what it's really like living with a mostly “hidden" disability that inspired her to share her eventful life journey.
Having had to explain her condition repeatedly gave rise to Broken and Beautiful. While working on her master's degree, Jessica joined a Facebook group for parents of children with cerebral palsy to find participants for her research. Instead, she encountered people seeking advice, sharing concerns, or simply looking for support in their daily challenges. “I realised I could answer many of their questions," she explains. “I shared what my mom did to help me at school, but also highlighted the difficulties and the importance of being treated as 'normal'."
Neverending surgeries
Born prematurely, Jess and her twin Dan contracted pneumonia when they were six weeks old. At one point she was so ill that she stopped breathing. Although there is no conclusive evidence, this episode could have caused damage to her brain.
“As a baby, I failed to thrive. I didn't crawl at the right time; I didn't sit at the right time and I only started walking when I was three years old."
Jess was 18 months old when she was diagnosed. “I had damage to the left side of my brain, and this had caused a weakness and spasticity in the right side of my body. This left me with what is called spastic hemiplegic cerebral palsy."
Her childhood was marked by countless rounds of botox injections, splints, casts and surgeries. Surgeons, neurologists, physiotherapists and occupational therapists have been part of her life as long as she can remember. She has had to endure repeated surgeries to stretch muscles and tendons.
“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," she says with a big grin.
“High school was tricky because of peer pressure and not wanting to stand out. It's difficult to explain cerebral palsy to people, because they assume it means you have brain damage."
Having a twin made the burden of disability lighter to bear, Jess says. “My sister often stuck up for me: She had to carry my school bag when I was on crutches and also explain why I was different, why I was slow; partner up with me for hockey drills when no one wanted to and carry me when I sprained my ankle and tore ligaments."
Dan inspired Jess to push her own limits to try karate, running and skipping. Jess also credits her mother for not molly-coddling her. “She encouraged me to try anything I wanted. Her philosophy was 'if it breaks, we fix it'."
Realising that sport was not her thing, Jess found refuge in the art class. “I fell in love with art; I had an amazing art teacher who really made me feel like I had a purpose in this world. At a young age, I already felt like I was pretty much a hopeless case because I didn't think I was good at anything, and I was bullied badly because, let's face it, kids are kids, and I was weird," Jess writes in her book.
The Van der Merwe twins, who attended Rhenish Girls' High School, both excelled academically – Dan has just completed a master's degree in animal science at SU.
Over the past few years, Jess has endured long and frustrating spells in hospital which highlights another challenge of having cerebral palsy – doctors tend to ascribe all ailments to the condition and often overlook other medical issues. When she became seriously ill earlier this year, doctors initially didn't realise her severe bladder infection was the result of a “superbug" – an antibiotic-resistant bacterium. Repeated seizures have left Jess with more questions than answers. It is now suspected that she might also be suffering from multiple sclerosis.
A brave and sassy survivor
Beyond the ups and downs of all her medical challenges, Jess shares another harrowing experience in her autobiography. The chapter that describes how she yearned to find love takes a dark turn when a braai with friends ends in horrific sexual assault.
Jess writes that desperation to be in a relationship caused her to disregard many red flags in the behaviour of a suitor. Although she found the man's intense attention “creepy", Jess kept telling herself she should be grateful that any man was willing to give her attention. The rape became a turning point that almost derailed her life.
Hitting rock-bottom afterwards, a failed suicide attempt becomes a catalyst for emotional growth that Jess describes with deeply moving candour and wit. She ends Broken and Beautiful with five inspiring life lessons to her younger self.
Jess acknowledges that her challenges, while leaving scars, have deepened her understanding of herself and taught her to appreciate life's small pleasures.
“I have stopped measuring my success in relation to the big milestones. It's the little things: The coffees with my granny, listening to my best friend complain about her brother, or my friends from overseas sending me podcast life updates; it's also the days not spent in hospital, and the inside jokes," she concludes.
What lingers with the reader after putting down Broken and Beautiful is not only Jess' remarkable resilience, but how the sassy young woman challenges conventional notions of bravery. She might be a “cat with nine lives", as she initially introduces herself, but she's also a delightfully “sparkly unicorn" that has succeeded in her mission to inspire others to face life's challenges with positivity and determination.
