If you want to have a happy ending, you need to know where to stop telling the story. Even a story that starts out sad, like Jenny’s. If you have the right leading character, which Jenny no doubt is, someone with oomph and charisma, with a wickedly evil smile and a sense of humour that can make your heart turn, with a spirit more full of fighting than you could ever expect in one person, more than all the antique heroes put together – then you can have a great story. One that makes audiences leave smiling. As Jenny’s story could. You wouldn’t expect someone with such a tough fate to be able to tell such an optimistic story – but she does. She’s lived it. As an inspiration. The doctor’s didn’t expect her to reach 30. She’s 60 now. There have been many moments when Hollywood could have shouted „CUT“ – and it would have been the prefect story. Her life went on, to the hardships beyond the triumphs, to the challenges that made her into who she is: TROUBLE.
This is her story, of which the ending is not clear yet. More than anyone, I find, she deserves a happy end.
But I’ll leave that up to you to decide.
Chapter 1: A little girl decides to fight.
The story of TROUBLE begins with a birth going wrong: a mother is in labour for more than two days with a baby whose umbilical cord is wrapped around her neck. It’s a miracle that mother and daughter survive this birth. As we will find out later, they both have phenomenal fighting spirit.
Flashback to how the parents met on a ship. He was a member of the Royal Air Force Jazz Band on its way to play for the King and Queen of England in Bulawayo. She was going back home to Cape Town, South Africa after a working holiday in England. They fell in love, got married, and the shipboard romance was to last 56 years.
At the time that TROUBLE comes into their lives, they are leading a normal, happy family life in Cape Town, South Africa. It is 1961. They have a seven-year-old son. At weekends they meet up with friends.
Then she is born with the umbilical cord around her neck and severe lack of oxygen to her brain. From the start it’s clear that her development is not like that of other babies. Her limbs jerk uncontrollably, and she has no control over her head, which is like that of a floppy doll. When Jenny is 14 months old, her parents finally get the diagnosis: she is severely disabled by 2 types of Cerebral Palsy – Spastic and Athetoid. The entire motor-movement section of her brain had been destroyed during the long labour. The condition is irreversable.
But the other functions of her brain are unaffected and develop „normally“. As a little girl, she notices all the things that her brother Michael and other kids can do that she can’t and it frustrates her immensely. Then, one day, when she is about 3 years old, her parents lie her down on the living room carpet to tell her what’s „wrong“ with her, and ask her if she wants to fight her condition. They make it clear that it is a very long road, with no guarantees, and that they would still love her even if she said no.
Jenny, who can only communicate with her eyes, blinks twice to signal „YES“. Her parents double check. She says: „YES“!!
Chapter two – The battle against her own body begins.
From that day on, the family is determined to fight. They find ways in which she can use her eyes to communicate, e.g. by making a chart asking her if she is too hot /too cold /hungry etc., with pictures pasted far apart so that she can clearly state her answer by fixating a specific direction.
Her parents are also determined to take her out of the house and integrate Jenny into society, which is very difficult. People are disconcerted by the sight of her spastic body. Either they can’t stop staring at her, or they pretend that she doesn’t exist. They think that because her body is so severely disabled, she is a “vegetable” and make comments like “Oh shame, look at that retard”. The friends that her family used to meet at weekends ask them to leave Jenny at home – her parents refuse and stop visiting them. Her brother gets into countless fights defending Jenny from the ridicule of other children. Her fight for understanding and acceptance continues to this day. But because of her family’s efforts, Jenny enjoys as “normal” a childhood as possible, playing with the kids in their road, going to Sunday School and Youth Group.
But maybe most importantly: Jenny starts with physical therapy, occupational therapy and speech therapy at the Vista Nova School for C.P. children. Her progress is very slow and painful. She struggles daily to learn “ simple” things: like opening her hands, which are clenched into fists, and learning to control the spasms in her arms. Learning to walk takes three operations and 9 years, and when she finally does, she is told not to walk too much, as it puts too much strain on her muscles. And then she has the “normal” school syllabus on top of that. Because she can’t write, Jenny has to take her exams orally. She is a very bright student who excels, reaching 75-95%, sometimes even 100% in all subjects.
But one of her most important struggles is learning to communicate with the people outside of her family, which takes her until she is 17. The breakthrough comes when she phones up Bruce Millar (a charming, blue-eyed singer at the time with the hit single “I won’t give up”), hoping to arrange to meet him after the concert. Jenny’s speech is very slurred. A lot of people think, when they hear her on the phone, that she is drunk or playing a prank. But Bruce immediately asks Jenny if she has a speech impediment and says: “Relax. Take your time. I’m not going to hang up on you. What is it you want to say?” It is the start of a friendship that lasts till today. And after that Jenny thinks: if Bruce can take the time to understand me, then anyone can! And that breaks the barrier between her and the world down for good. It is the start of: TROUBLE.
Chapter 3: Jumping into the cold water.
Jenny leaves the Vista Nova school after completing standard six – the furthest the school went to at that time. She is 15 years old and has no-where to go except for sheltered employment, the only option for disabled people and one she refuses to accept. But sitting at home is also out of the question. Searching for something to do, she hears about St. Giles sports club and remembers a dream…
Flashback: one day, when Jenny was 5 years old, she went to watch her brother compete at his school’s annual athletics championships. She sat in her adapted pram next to the stands, watching and listening to the people cheering the athletes on. She loved it. On that day, sitting in her pram, unable to walk, swim, jump, run, she decided to become an athlete. And not just any athlete: an Olympian.
Of course, hardly anyone took this seriously. But her brother, Michael, did. One summer holiday, he started to teach her how to swim. They practiced eight hours a day, five days a week for six weeks. By the end of this time, Jenny could swim (Okay – it was a doggie paddle, as she herself admits – but it was a start…)
When she hears of St. Giles, a sports club for disabled athletes, anything seems possible. Jenny starts going there in May 1977. She finetunes her doggie paddle into freestyle and backstroke, swims her first Western Province Trials in October/November and is selected to participate in the provincial side at the SA National Championships in March/April 1978. Apart from swimming, she also competes in shot put and club-throwing. It is the start of 18 years of competitive sport.
Chapter 4: Stepping out into the world.
But sport is by no means her only passion – Jenny is keen to try out anything that might seem impossible. She is boundlessly enthusiastic about trying out new things and can enjoy herself so much trying them out, that you’d think she might burst. She has a childlike ability to look forward to something with shameless excitement and to indulge in the memory for ages afterwards – wallowing in the joy of pushing her own boundaries and once more having proven people wrong in assuming she couldn’t do something. She learns to work on a computer, goes bungee jumping, travels to England with her family and to New Zealand on her own (twice!). She helps with fundraisers and raises awareness for her disABILITY at Western Cape C.P. Association. Jenny always has at least one project. Something she wants to learn, somewhere she wants to go, someone she wants to meet. This madness has lead her to experience a variety of crazy situations, like the time she was asked by Pick ‘n Pay (a prominent chain of Supermarkets in South Africa) to test-drive a new shopping trolley for the disabled at a PR gig and suddenly she got a spasm that made her head straight for the tomato sauce display.
She meets Sir Cliff Richard, the Late John Denver, the Late Joe Dolan, Chris de Burgh, Jeremy Taylor, Bruce Millar, Air Supply, Josh Groban, to name but a few. Many of them remain friends to this day, following her progress. She is one of eight people to start a computer company for disabled people. She doesn’t take “no” for an answer, and if there is someone who treats her rudely, she might just fake a spasm and „accidently“ kick them.
At the same time, she’s racking in the medals and her sporting career takes off internationally.
Chapter 5: From the wheelchair to the podium.
After 6 years of competitive swimming on a provincial level, she is selected to represent South Africa at a competition between S.A. & Israel in Tel Aviv. It is 1984. Due to Apartheid, South Africa is banned from international sports and the competition is classified as a “friendly”. Jenny breaks the Paralympic Record in swimming, but it is not recognized due to the country’s status.
Despite competing internationally, finding a professional coach isn’t easy and mostly family and friends act as coaches, helpers and inspiration. She is often patronized and stared at the pools where she trains. But eventually some professional swimmers recognise her dedication and talent and help her with her training.
The realities of disABLED sports are often invariably hillarious – at least when TROUBLE is around. There is, for example, the time she does Club-throw (in the shape of a wooden skittle, with a lead weight on the end), gets a spasm in the middle of the throw and hits herself on the head. She has to get 8 Stitches – but returns a week later to represent Western Province at the S.A. Championships For Physically Disabled in the same event wearing a helmet on her head.
Jenny goes on to represent W.P. for a total of 18 consecutive years at the SA Championships. In this time she wins 67 Gold, 23 Silver and 5 Bronze Medals and breaks numerous S.A. & World Records. She is also selected to represent South Africa 2 more times : in England in 1993, and in Malta in 1994. She wins 2 Gold, 1 Silver and 2 Bronze medals & breaks two World Records at the international events. Jenny’s proudest moment to date was standing on the Winners’ Podium, hearing the national anthem when she broke the World Record and got a gold medal for shot put.
But then her career is tragically cut short. One day, Jenny is in a mall after training. A child walks by and accidently drops a toy, making a very loud noise. The noise triggers a severe spasm: Jenny’s arms shoot up to way above her head (normally they would only go waist high) and almost all the muscles in her chest, stomach & back are torn. This freak accident puts an end to her international sporting career (to date, anyway…she never stops thinking about a comeback!).
Chapter 6: Fish out of water.
Her body struggles to recover from the accident, she takes anti-inflammatories and painkillers three times a day for 19 months and is severely restricted in her movement. She’s unable to do any sport. Not going swimming is devastating, not just from a sporting perspective: being in the water has always been the best way to release tension from her muscles. So now, the tension increases more and more.
But Jenny a.k.a. TROUBLE refuses to be knocked over: she starts to use a motorised wheelchair to re-gain some independence. And she moves more and more into motivational speaking. She addresses all sorts of functions: schools, universities, managers, Lions’ and Rotary Clubs, Conferences – and many more – often to standing ovations. Even though her main goal is to further understanding for C.P., she also manages to “earn some of her own money” doing this, something that she’s always dreamed of. When her physical condition has stabilised enough and she is still unable to return to the sports she did before, she takes up Boccia. And she starts painting and doing prints at a cultural centre, happily calling her creations “spastic art”. She also goes on another trip to NZ to visit a friend there that she’d met through swimming.
Chapter 7: Tough times / An island of love
Meanwhile: Jenny’s parents are getting older. Their greatest fear had always been that there would be no-one to take care of Jenny when they couldn’t do so any more. Now, slowly, Jenny is starting to look after them more and more, making up for her lack of physical ability by taking over all the planning and a lot of the emotional strain. She interprets what her mom says to the outside world in the same way her mom had done for her when she was a child. And as her Dad forgets more and more, she becomes his memory. At the same time, Jenny’s own physical condition deteriorates even more, the stress increasing her spasms. Watching them from outside at this time, as a friend, is partly unbearable. Each of them suffering with such dignity, mobilising all of their energy to help the other one in whatever small way they can. At the same time, one has to envy them, because there is
SO MUCH LOVE.
On 13th October 2008 Jenny’s mom dies at home aged 78, surrounded by her husband, children and a Carer.
Her Dad’s Alzheimers has progressed so far, that Jenny had to tell him every day, again and again, that his wife has died. He won’t let her out of his sight. Although the situation puts unbearable strain on Jenny, she refused to put him in a home, just as he’s always refused to put her in one. They live alone, in the house, looked after by carers 24 hours a day.
On 19th May 2012, he dies peacefully in his sleep aged 81, surrounded by his 2 children and 2 adult grandchildren.
Chapter 9: „My time“
The grief following her parents’ death is much worse than Jenny had expected. She is suddenly left alone in the house they had lived in together since she was a child. She continues to live there, the carers coming in to look after her, living off an inheritance an aunt in England has left her.
But it is also the start of a new life. „My time“ as Jenny called it once. After so many years focussing completely on her parents, Jenny can focus on herself again. But her physical condition doesn’t allow her to do what she had looked forward to doing. She’d dreamed of going to the London Paralympics to get a medal in memory of her mother, but she can’t compete. Her Body, she says, is like an old car. The wear and tear is beginning to show. Her bladder is removed. The spasms she learned so hard to control at school are getting worse again. Lying down has become unbearable, she has great trouble sleeping and gets sores from sitting 18 hours a day. And, on top of that, Jenny faces what she fears the most: returning to the condition she was in as a child, unable to do anything and, worst of all, unable to communicate.
Then, to top it all of, she finds out that her inheritance is diminishing much faster than she’d anticipated, the 24 hour carers and medical bills all taking their tolls. Jenny’s parents took great pride in never sending her to a home. For Jenny, living in her own home is the only bit of control she has over her life.
((We still have to fill in the most recent chapter of Jenny’s life – which forced her to first sell the house and move to a flat with her carers, then a year later to move into a home. Her life in the home has been very difficult, and fraught with the battle to get closer to her friends and family in Cape Town. But we will get to this in good time… as soon as we’re done with the fundraising!))
It is at this low point that she decides on a new challenge: to write a book about her life. For Jenny, writing a 5 line e-Mail can take 40 minutes, and so writing a book is a mammoth task.
But Jenny would not be TROUBLE if she weren’t up to the challenge. It is still part of her life-long attempt to create greater understanding for C.P.
Though she is not sure how she will solve all the problems she faces, she has decided to tackle those challenges when the book is done and to stick to her motto: „Never give up!“
If you would like to contribute, please write an e-mail to fundraisingfortrouble[at]gmail.com.