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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!
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.”
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