Monday, December 31, 2012


 My dear friend Karin writes such beautiful words of me here in the margin on the right-hand side, comparing me to a lion and giving me the name MufaSA.  Anybody with MSA will however tell you that there are days when you are so afraid of what lies ahead that you feel more like a helpless little mouse than a lion.

As this beast of a disease continues to sneak up like a thieve in the night robbing me of ever more of my body functions, it shows similarities to another beast of prey that often crossed our path on our trips into the wild; the hyena

When camping in remote areas, these opportunistic nocturnal scavengers would often roam just outside the circle of light of our campsite to make their appearance as soon as we put the lights out to retire into our tents.  At some places they were bold enough to appear while we were still up and about.  At first this was very scary, but we soon learned to chase them away by boldly running towards them whilst waving our arms wildly and shouting ‘voetsek’ (Afrikaans for get lost or go away – pronounced ‘footsack’)! 

The spotted hyena, the most common large carnivore in Africa, is a highly successful hunter and scavenger. It is known to have the strongest jaws in the mammal kingdom.  We had to take care to keep refuse and cooking utensils well out of their way and falling asleep around the camp fire or in the open was taboo.  Given the chance they would take a bite at an ear or a foot or any body part conveniently protruding from a tent.  Under those circumstances, without ablution facilities, I did what a girl had to do as quickly as possible while looking out for hyenas over my shoulder.  Imagining the scenario if there had to be hyenas in those uncomfortably exposed moments makes me laugh now!

Although keeping my guard up against the onslaught of MSA by doing my exercises etcetera, it has lately robbed me of what little was left of my ability to walk.  I've been using the wheelchair for almost two years now, but still tried to walk with the walker and Johnny’s help for the therapeutic value it had for my kidneys and bones, even when I could only manage a couple of steps.  This became increasingly difficult and my last desperate attempts to keep this early morning walk going, came to an end when my feet wouldn't move (*) and Johnny left me with the walker for a couple of seconds to get the wheelchair.  Although the wheelchair was only two metres away, my balance is non-existent, my muscles wouldn't hold me upright, and I fell backwards without warning.  (*‘Freezing’, a typical Parkinson's symptom, causes the feet to feel like they’re glued to the floor.  Together with the lack of voluntary coordination of muscle movement and severe balance problems this leads to the inability to walk, although not paralysed).  (Read ‘MSA in a nutshell’).

During a drought two centuries ago the people of Harar in Ethiopia started feeding the hyenas to stop them from sneaking into their village and eating the people.  Their recognition of the needs of their predator prevented further disaster. 

Like the people from Harar, I have made a truce with my hyena.  It seems pointless and causes stress to rage against something I cannot change.  I have familiarised myself with the disease.  I have learned what to expect and where MSA is most likely to attack.  I'm feeding my hyena in many ways; by taking preventative measures against constipation, which was the cause of several hospitalisations for a dear friend.  I am forced to spend more time lying flat on my back or back ache becomes an unmanageable monster.  Keeping cool with the use of air conditioners, hydrated by taking enough fluids, eating salty snacks, are all strategies to prevent my blood pressure from plummeting through the floor. 

True to the nature of this beast and despite all the precautionary measures, the hyena inevitably sneaks up to snatch parts of me.  I will however not allow it to take my spirit and my soul.  Acceptance of my situation enables me to experience the joyful peace of serenity.

I hope that in the coming year my family and friends…and their families and friends will join forces with us to raise awareness as well as funds for research.  I’d love us to beat this beast and shout VOETSEK MSA!

Best wishes for 2013 to all!

“God grant me the serenity to accept the things I cannot change; the courage to change the things I can; and wisdom to know the difference.”

Monday, December 24, 2012


A while back I received one of those emails forwarded from one person to another.  This specific email showed a logger who, with his chainsaw, carves sculptures of animals out of logs. I was filled with amazement that he could look at a rough log, one that looks exactly like millions of other logs, to see the potential beauty inside it, and then proceed to carve it out.

This made me think my life and this physical as well as spiritual journey the disease, MSA, has taken me on.  The following questions came to mind; does God see potential in me?  Was MSA the chainsaw needed to reveal this potential?  Does God allow diseases and other misfortunes to happen in order for us to grow spiritually?

I don't have all the answers yet. Hopefully this journey will teach me more as it happens.  But I do know this; I might never have experienced spiritual growth if MSA didn't happen to me.  The 'busy' life I led before was filled with trivialities, often with good intentions which never realized. I was on the run to nowhere, too distracted by the demands of my lifestyle.

The disease forced me to slow down and allowed me time for introspection and I didn't like what I saw.  Did God grant me this opportunity to change?

Although I can expect physical degeneration, I am excited by the prospect of spiritual growth.  In the forest I now grow, the Keeper knows the name of every tree and provides the fertilizer for growth.  God doesn't only see the forest, but every individual tree.  He doesn't see the crookedness of the trees, or the roughness of the logs, He sees the beauty inside you and me.  If we allow Him, He will carve a glorious and unique sculpture out of each of us.

James 1:2-4
Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance.  Perseverance must finish its work so that you may be mature and complete, not lacking anything.

Psalm 33:13-15
“The Lord looks from Heaven.  He looks on all the inhabitants of the earth; He fashions their hearts individually; He considers all their works.” 

Thank you for allowing me the use of your beautiful photos Laurette.

Tuesday, December 11, 2012


Lilian with me - Dec 2010

As the disease progressed over the last couple of years and I started losing my ability to do housework, we employed my formerly part-time house worker as a full time housekeeper/cook/carer.  Lilian now takes great pride in her newly acquired cooking skills and she lovingly cares for me during the week. Nowadays this includes helping me in the bathroom and getting dressed.

My 64 year old husband, Johnny, runs his business in Stellenbosch, does all the shopping and cares for me after hours and on weekends.

On occasions when Lilian is on leave or ill I've made use of a carer supplied by a nursing service.  When Lilian phoned early this morning to let me know that she’s ill, I immediately contacted them.  Unfortunately the carer I previously used was not available today, and they had to send someone who knows nothing about me, MSA, or my household.  Johnny had several appointments and couldn't wait for the substitute carer to arrive to show her the ropes. 

When she arrived the nurse introduced her to me.  I showed her my bell and told her that I would ring when I needed her.  Nothing too complicated I thought, until I needed her and rang…and rang…and rang…getting no response from her where she sat reading a magazine.  Not a good start!  After I found out that she was introduced to me by a wrong name, I started to doubt whether the nursing service knew anything about her or her abilities to care for disabled patients.

I wonder how others in similar circumstances handle situations like this?  Do I need to write a manual on “How to care for Sonja” so it can be handed to the uninitiated when they come into my home?  Are my expectations to high?   

When I was diagnosed the idea of someone caring for my most intimate needs some time in the future freaked me out.  At that stage I even disliked showering and getting dressed at the gym. 

Getting naked in front of strangers is now no longer an issue.  Who knows what I could've done if I was able to combine this new found ability with my previous ability to dance! ;)

Photo supplied by Laurette's photography

Related Posts Plugin for WordPress, Blogger...