A Stellenbosch University (SU) student has recently published an autobiography of her experiences and struggles of living with Cerebral Palsy, Cape {town} Etc reports.
The autobiography, titled Broken and Beautiful, was written by Jessica van der Merwe (24), who is currently completing a master’s degree in linguistics at SU.
Also read: What you need to know about Cerebral Palsy
The book has been described as a ‘poignant and witty exploration of her struggles with Cerebral Palsy’, as it details how Van der Merwe learnt to take control of her life, advocate for herself and find strength in accepting help from others, according to a press statement issued by SU.
‘I’m not disabled enough to be disabled, but I’m also not normal enough to be normal,’ said Van der Merwe.
On occasions, people who would meet Van der Merwe would ‘overcompensate’ and assume she couldn’t do anything by herself.
In addition, other individuals would question why she would receive preferential treatment, which included parking for disabled people or extra time when writing exams.
It would be events like these of living with a mostly ‘hidden’ disability that inspired Van der Merwe to share her eventful life journey, which would inspire her to write Broken and Beautiful.
While working on her master’s degree, Van der Merwe joined a Facebook group for parents of children with Cerebral Palsy to find participants for her research.
She would encounter people seeking advice, sharing concerns, or simply looking for support in their daily challenges.
‘I realised I could answer many of their questions,’ said Van der Merwe.
‘I shared what my mom did to help me at school, but also highlighted the difficulties and the importance of being treated as “normal,”‘ Van der Merwe added.
Both Van der Merwe and her twin sister Dan were born prematurely and contracted pneumonia when they were six weeks old.
At one point, she was so ill that she stopped breathing and although there isn’t any conclusive evidence, the incident 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,’ said Van der Merwe.
Van der Merwe was 18 months old when she was eventually 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,’ said Van der Merwe.
Throughout her childhood, Van der Merwe would receive countless rounds of botox injections, splints, casts and surgeries, with 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,’ said Van der Merwe.
‘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,’ Van der Merwe added.
Both Van der Merwe twins attended Rhenish Girls’ High School and excelled academically, with Dan having just completed a master’s degree in animal science at SU.
Over the past few years, Van der Merwe had to endure long and frustrating spells in the hospital, as doctors tended to ascribe all ailments to the condition while overlooking other medical issues.
When Van der Merwe suffered from a bladder infection earlier this year, doctors didn’t realise that it was the result of an antibiotic-resistant bacterium, known as a ‘superbug’.
Due to repeated seizures, it has been suspected that Van der Merwe might also have been suffering from multiple sclerosis (MS).
In one chapter of her autobiography, Van der Merwe shared a harrowing experience of sexual assault she experienced while at a braai, which became a ‘turning point’ that almost derailed her life.
After hitting rock-bottom afterwards, a failed suicide attempt became a catalyst for emotional growth that Van der Merwe has described with ‘deeply moving candour and wit’.
In Broken and Beautiful, Van der Merwe ends the autobiography with five inspiring life lessons to her younger self.
She acknowledges that her challenges, while it has left scars, have deepened her understanding of herself and taught her to appreciate the many small pleasures of life.
‘I have stopped measuring my success in relation to the big milestones,’ said Van der Merwe.
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,’ Van der Merwe added.
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Picture: Stellenbosch University / Facebook
