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Nikki would easily tell you that she is a completely different person to the one she was just 5 years ago. And although Nikki’s story does not start at 27 years old, it is clear that at this turning point in her life, her narrative was permanently rewritten. Through an exploration of an incredible life, I invite you to join Nikki’s story – in the month of her 32nd birthday and after having just completed a challenge most wouldn’t dream to take on! But, first, let’s take you back into childhood: a time which Nikki admits is difficult to talk about.
Nikki and her twin sister both have cerebral palsy; and although they have been a constant source of support for each other, their journeys have been far from comparable.
Describing herself now as having a ‘slight’ disability, Nikki tells me that when she was younger, her cerebral palsy diagnosis was accompanied by poor vision and epilepsy. Entering a remedial education system from the ages of 3, it was intended that Nikki and her sister could benefit from a schooling alternative that provided in-house specialised support. Though Nikki attended regular physiotherapy and remedial sessions, there were consequences to her school attendance that could not have been foreseen.
Wearing glasses from a very young age, suffering regular epileptic seizures at school and having a stiff left hand affected by spastic cerebral palsy, Nikki experienced severe bullying from the age of 5 or 6. “Retard, four eyes, nerd, claw and cripple” are some of the horrific terms used to degrade Nikki over the years.
It is well-researched that those who bully – verbally or physically – do so in order to promote their own feelings of self-worth or sense of confidence. And, at a special needs school whose entire peer unit is comprised of pupils facing various learning, intellectual or physical challenges, it is noteworthy to consider whether these young kids may enter the school environment experiencing amplified feelings of inadequacy, self-doubt, insecurity or low self-esteem. Understanding the psychosocial milieu at Nikki’s school may help us comprehend exactly how traumatic it must have been to experience, as a young child, the following scenario…
At the end of Grade 2, Nikki’s school fairly decided that the girls could not attend the same class. Unfortunately, at a smaller school with limited class options, there were not alternatives. Consequently, on the grounds of her maths results, Nikki was chosen to repeat the entire year. When your formative years are spent learning and playing in such small classes, it is painful to imagine the feelings of hurt internalised by an 8 year old who will complete their entire school career a year behind: their friends and their twin sibling.
The next year, when Nikki finally went to Grade 3, she fell into a seizure in front of her class. Powerless to communicate with her peers, but able to hear those around her beginning to laugh, Nikki recalls one boy proceeding to kick her. The impact of what was experienced on that day – alone and scared – Nikki truthfully tells me: “It was a big embarrassment”.
Throughout the years in Junior School, the harassment from other pupils continued. Though bullying is tragically a common trauma for many students at some point during their school career, Nikki posits that being introverted by nature was core to her unpopularity.
Though introverts are considered to be thinkers, Nikki wholeheartedly believes that being an introvert or shy at school doesn’t bode well for being accepted or valued by fellow students. Describing the immense difficulty in feeling like she didn’t belong with her peers, Nikki expresses that she wanted people to see that she was “one of them”. However, this was far from reality.
One day outside of school, Nikki attended a tennis lesson of her older sister, whom she greatly admired. It was at this point that Nikki became fascinated by tennis. Determined to learn how to play, too, Nikki approached the coach and asked if he could also coach her. However, instead of being thrilled at the prospect of another eager student, the coach looked down at her left hand and had made up his mind. Before agreeing to train Nikki, she was told to go home and practise for an entire year on her own. Little did that trainer expect that Nikki would return and that he would have no choice, but to take her on as a student!
Elaborating on her commitment to learn the correct techniques, Nikki said she wasn’t even bothered that it may take her 10 or 20 times longer than other students to achieve the same results. She was determined. About the only thing that Nikki had to adapt due to her tense hand muscles was her serving routine, for which a couple of neat quirks were developed! Tennis quickly became Nikki’s passion, saying “On the court, I came alive”. Though Nikki was beginning to embrace some opportunities in her new world of tennis, school life was still troubling.
Approaching the end of Junior School, when her closest friend left, Nikki became more desperate to find an environment which accepted and embraced her for her personality and strengths. One day soon, Nikki said “I’m done. I want out”. Following a period of exploring various mainstream schooling options, the decision was made to attend Fish Hoek High.
Wanting to feel “normal” since she was a child, Nikki describes the relief at entering a school of hundreds in which she was “just another student”. Perhaps for the first time, Nikki experienced a sense of anonymity that did not exist in her previous school, and an opportunity to finally step into her full identity. It is also at this time that she found her faith in God – a spiritual compass that has brought her through very dark times.
Finally, it felt as if the world was opening up for Nikki to enjoy. And, being accepted and encouraged in her new school, Nikki flourished, and so did her tennis achievements!
After being chosen to represent her age group in the Boland Masters at the age of 15, Nikki was selected to compete in the Western Province Junior Masters. Revelling in the memories of competitive sports and high school, Nikki reveals that this competition was the pinnacle of her tennis career. Making peace with the fact that she likely didn’t have what it took to become a professional sportswoman, Nikki focused on her final academic years and completed matric.
One year during her Events and Tourism qualification, Nikki and her group were tasked to host a fundraising event. Upon deeper reflection, Nikki recalled a student whose story had touched her many years earlier: Chaeli Mycroft. Feeling inspired to reach out to The Chaeli Campaign and host an event in support of the non-profit organisation based in Plumstead, Nikki connected with Zelda: Chaeli’s mother and the organisation’s CEO. An independent fundraiser was hosted in Greenpoint in aid of The Chaeli Campaign; and it was a great success!
Over the following years that passed, Chaeli’s activism work and the organisation’s growth remained a source of inspiration to Nikki as she continued personal and professional endeavours. Almost 10 years would go by before The Chaeli Campaign would enter Nikki’s life more formally. However, this development did not occur before Nikki was met with, likely, her most profound insight yet.
Growing up while struggling to accept her disability, Nikki tells me that when she was younger, she was unable to mention the word “disability”. And, although Nikki outgrew her epilepsy seizures before her teen years, Nikki grappled to accept that cerebral palsy would be part of her life forever.
At this point, it’s significant to contextualise the medical concerns of adults living with cerebral palsy. There seems to be a lack of information on the impact that muscle spasms and resultant muscle deterioration have on overall body function over time. An unintended repercussion is that doctors cannot effectively advise young adult patients how to care for their condition, primarily in terms of optimal movement to prevent muscle stiffness. Although Nikki says she was subtly warned, the recommendations were “brushed off” and not taken seriously. It was at this moment in our conversation that Nikki revealed to me the epiphany that altered her life forever.
Nikki realised that by hiding her disability from a harsh society and the unforgiving judgement of others, that she was not walking in the fullness of who God created her to be. This spiritual awareness was accompanied by the painful realisation of the unnecessary alienation that she was enduring all these years. Denying the full impact that disability was having on her life until this point in time, Nikki was unable to prevent a life-altering crisis which would test her like nothing she had experienced before.
At the age of 29, the amassed consequences of neglected mobility needs over the years took hold over Nikki’s body. The result? Debilitating muscle stiffness, intense migraines and on some days, the impaired freedom to walk or even get out of bed.. Nikki was called to wake up and act urgently!
Accepting responsibility for her condition, prioritising fundamental mobility needs and restructuring her environment, Nikki contacted a biokineticist for help. Training sessions with a professional assisted in building core strength and taking control of more intensely affected areas of the body. However, private sessions became expensive and Nikki did not continue a specialised physical programme. During the rest of the year in which Nikki was not seeking professional support, she says she regressed tremendously.
Entering a new year in 2019 – with new opportunities to instil change – Nikki was determined to build strength and maintain a level of sufficient fitness. After contacting the Walking With Brandon Foundation and motivating to be accepted into their programme, Nikki was thrilled to join the organisation!
Using a treadmill and running track in the sports facilities, Nikki was introduced to running. For the first time since discontinuing competitive tennis, Nikki rediscovered her love of sports and a sense of purpose. A mere couple of months after starting her running venture, Nikki completed her first 12km race!
Running has since become Nikki’s saving grace; a sport which now combines fundraising for social change and inspiring a path of changemaking. Nikki decided this year for her birthday to fundraise for a non-profit very close to her heart: The Chaeli Sports and Recreation Club. An organisation formed by The Chaeli Campaign in 2010, the CSRC promotes the rights of kids with disabilities to access and compete in sports.
On Sunday 22nd November at 6.30am, Nikki and her support runners set off from the Bergvliet Sports Association to run the longest distance Nikki had attempted to date, a full 42,2km marathon. Stopping at water stations along her route to the turnaround halfway point in Simon’s Town, Nikki tells me that her support was epic!
From 16km into the run, Nikki became disorientated and numb. Consuming too many electrolytes in the first section of the run, Nikki felt like giving up. With the help of salts and water, Nikki kept going until the 30km mark – until it again felt that the run could be over. Plagued by muscle and back pain, as well as agonising spasms, Nikki was determined to complete her goal and finish the last 12 km.
Every person who ran and supported Nikki played their own special part. Nikki says that there isn’t a single person that she can’t give credit to, as “I wouldn’t have made it without them (all).” The day before her 32nd birthday, Nikki successfully completed her first marathon – an event she will treasure for years to come!
Returning to the CSRC grounds in just over 6 hours, Nikki is elated to have completed the run within the 6hr 30 cut-off time of the Sanlam Cape Town marathon. Having wanted to participate in the aforementioned marathon since marshalling last year, Nikki now knows that it is well possible! After an exhilarating, but exhausting experience for all involved, Nikki is regaining strength before setting her eyes on her next goal. It is definitely not the last you will hear of Nikki Kemp – a woman with impressive determination and heart.
The day I first sat down with Nikki, we spoke in the sun outside The Chaeli Campaign HQ while Nikki shared some parting thoughts with me. Reflecting on the symbols tattooed on her forearms and the profound scriptures that inspired them, Nikki tells me of her favourite, which reads: “Though I have fallen I will rise; and though I sit in darkness, the Lord will be my light.”
Long after my deeply profound conversation with Nikki, the words of Nick Vujicic, a man who inspires Nikki immensely, sound in my mind: “Others say to me, it’s ok to be special. But, I don’t want to be special. I want to be normal.”
The need to feel valued is not unique; it is universal. And being able to validate this need in others begins with accepting and appreciating – valuing – ourselves. It is most important, as we interact in person and via social media, to remain kind in our approach with others. Some challenges that others are facing are noticeable to outsiders, but more often than not, these struggles are invisible. Though Nikki’s story reminds us that hurt can be remembered for a lifetime, remember that being compassionate – to yourself and others – is intrinsically life-affirming. I encourage you to make a conscious effort, every day, to see beyond the external self and choose to recognise potential in others.
The Chaeli Campaign Social Media Links
Instagram: @ChaeliCampaign
Twitter: @ChaeliCampaign
Facebook: The Chaeli Campaign
Chaeli Sports & Recreation Club Facebook: Chaeli Sports and Recreation Club