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.
* This link can only be viewed by facebook users
