EVERY DAY DESERVES A CHANCE

When Lilian, my carer phoned at 6 am on Tuesday to say she was ill the van Rhyn household was challenged. We had house guests and I expected the hairdresser. Experience had taught us that phoning an agency for a temporary carer was futile. All competent carers are in permanent employment. Thus, Johnny decided to work from home whilst caring for me.

I don't know whether the long sit through the high light process with the hairdresser, or the stress caused by Lilian’s absence was to blame for me turning into a jelly fish. With no control over my trunk muscles I keeled over to the side (Pisa syndrome). By the end of the day my big strong husband battled to handle me. He also had to hold me up so I could perform the necessary ablutions.

I knew it would be impossible to keep my lunch date with Karin the next day. Our long awaited outing will have to wait some more. She agreed to come Sissi-sit me for a couple of hours to allow Johnny to go to work for a while. Feeling frail and uncertain of the day ahead, I asked the Lord to infuse me with His strength.

As I settled down with my pc this post, written by my friend/neighbour/author/photographer, Douwleen Bredenhann, was the first thing I read on facebook. It was her contribution to our *Art for MSA project;

“Where does one begin to give some insight into a friendship that started off rather unconventionally and remains to be extraordinary?

I became aware of the existence of Sonja van Rhyn after we had moved into a house across the street from them in August 2003. Now, Sonja is not the kind of woman who goes unnoticed – once you have seen or met her, the image of this beautiful, well spoken, stylish blonde woman stays in one’s mind. From the way she carried herself I immediately suspected that she was or had been a dancer.

We often saw her and husband Johnny walk their two Jack Russell dogs late afternoon and I felt a strong need to make friends with her, but felt slightly intimidated - she seemed almost too perfect. And so years passed by with us being mere acquaintances who waved to each other on the street.

One morning she walked the dogs on her own and we started talking outside our gate. Although she looked as gorgeous and well groomed as ever, I got the inexplicable feeling that something about her had changed, but could not put my finger on it.

Some months later I again saw Sonja and the Jack Russell’s and spoke to her. And again felt that something in her life had altered. Her balance seemed to be affected. Not hugely so, it was in fact barely visible, but as an author who more or less feels compelled to look for traits that distinguish people, I picked it up and an uncomfortable thought surfaced: Could she be having a drinking problem? I felt (and still feel) ashamed for wondering about it, but yes, that was the first thought that came to mind.

After that I did not see Sonja for about two whole years and never really wondered why. Life goes on and people (including our neighbours) seemed to be getting on undisturbed with the process of living their lives. Or so I assumed.

The next time I saw Sonja was in Somerset Mall where she was being pushed in a wheelchair by her husband Johnny. I could not hide my shock on being told that she had been diagnosed with MSA (Multiple System Atrophy) and could no more walk on her own. At the time I knew nothing about this condition and thought of it as something ‘similar’ to Joost van der Westhuizen’s motor neuron disease. Which it is not – MSA is also far more rare.

And so began a friendship that is growing stronger by the day even though we still see each other infrequently. Now Sonja is almost always in my thoughts, and her courage and determination to live as well and bravely as she possibly can, is nothing less than heroic. The flight-footed ex-dancer now needs full time assistance and care and spends most of her life in bed and her lazy boy (girl?) chair. But if you were to see her sitting semi upright in that lazy-girl, you would be forgiven for thinking that someone so exquisite who appears to be the epitome of femininity, cannot be THAT sick. But she is, sadly so, more than you and I can begin to imagine.

While Sonja's daily battle with MSA necessarily shifted her bucket list and most of her priorities, she continues to dazzle everyone who crosses her path or is fortunate enough to be part of her life. Few things inspire the way courage does, and Sonja’s courage is of incalculable value to all her family, friends and the MSA sufferers around the world for whom she constantly raises awareness.

In September 2012 I asked Sonja to become part of my new photography project called WAUP (Women Against Unrealistic Photo-editing). The ten models and I have since formed an incredibly close knit friendship circle who keep in touch regularly. My art contribution for Art for MSA therefore is the photograph below of Sonja from the WAUP series.

Sonja, thank you for being you and for enriching my life beyond words. You still rock like you did in this 1984 dancing video (courtesy of Liam Merwede, Sonja being the short haired dancer).”

Thank you for your kind and beautiful words Douwleen. They came at a vulnerable moment to remind me that I could be brave.

Sissi soon became bored and asked for the secateurs. Our gardener had become ill and the garden over grown. As with all compulsive gardeners, one thing led to another and soon there were multiple heaps of cuttings. Slightly panicked, Karin phoned her husband and Hugh soon arrived with the magical shredder. With the help of the men, the heaps of cuttings were fed through the shredder and put back in the shrubbery as a mulch. I watched all this in air-conditioned comfort from my lazy-girl.

The day which started very wobbly ended perfectly with a glass of wine and seafood risotto cooked by Loubser and Lukasz. I was doubly blessed when my precious Sissi stayed for supper. The couple of hours she promised had turned into an entire beautiful day.

The next day a friend popped in and declared herself willing to be trained as a stand-in carer for short periods when we're in a fix. What a precious selfless gift! Thank you my friend.

Ps 59:17

You are my strength, I sing praise to you; you, God, are my fortress, my God on whom I can rely.

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