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
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!
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.”