The Desert of Uncertainty

Spring 2010 #12

Damocles revelled in blissful ignorance of the warrior’s sword suspended above his head by a single strand of horse hair. Seated on the throne of Dionysius II, the flippant underling was poised to die, or perhaps to learn.  King Dionysius had observed his servant’s ignorant envy of royal opulence, and proposed that they should swap places. Damocles jumped at the opportunity to take the throne and sample the trappings of power; unaware of the responsibilities and threats a King must daily face.   But a single glance upwards during his night of feasting brought him begging for release from the terror of uncertainty.

This week marks the second anniversary of my pursuit of a medical answer to a growing list of questions, and to date disagreement and indecision reign.  This is an essay on the pain of uncertainty. If you have read Rejoice! in the past you will know this is hardly a new theme….

Above my own head hang a pair of blades, weapons whose edge and tenuous tethering are too often on my mind.  One sword is the often mentioned phrase Motor Neurone Disease.   When will this blade be either drawn or permanently sheathed?  The second steel hangs in the form of letters from a Neurologist who I saw for one brief hour three months ago.  In ‘All in the Mind’ I wrote about the personal letter I received, containing his opinion that my condition is ‘functional’, or psychosomatic.  What I failed to appreciate was that he had also written to the various other doctors at greater length, stating his view in more assertive terms than the cautious speculation other specialists prefer. His opinion has rippled through the ranks of therapists and service providers, and I recently obtained a copy of this second letter.

It’s a tough read.  Added to his observation about my curious skill in walking backwards (perhaps I need nothing more than a mirror after all?) are more troubling remarks, such as his indictment that I chose to use a wheelchair of my own accord, noting that “patients generally resist this as long as possible”.   It seems such a misreading of my story, as if I hadn’t squeezed the last drop of support from a plethora of sticks, crutches and frames for a full year beforehand. And he fails to take account of a most obvious fact: with no diagnosis there has been no advice from any doctor about anything.  This stony silence has been the most painful experience, and without professional recommendation the transition to each new appliance has been awful.  This and other comments infer that I am a hypochondriac, although he stops short of using that term.  The Doctor’s letter to his colleagues ends with these words, written about me:  “we will see what effect my letter has on him”.   Well Sir, the effect of your letter has not been good! 

But it is the stark difference between the pair of weapons dangling from the rafters that really messes with my mind!  A rapier engraved ‘MND’ hanging beside a stiletto marked ‘Neurotic’.  Something in me screams to reject the second: I stubbornly insist that I am not mad!  Which leaves the first sword as the only choice.  But who in their right mind would select an incurable diagnosis over a trip to the psychiatrist? If I claim too loudly that I am of sound mind I might just prove that I am not! 

If the colourful Sword of Damocles legend could be transported from the luxury of an Ancient Greece to the arid deserts of Northern Africa the tale would make no sense at all.  This is the environment the Desert Fathers would inhabit centuries later; Christian mystics for whom a parable of impending doom would have little to offer.  Life is precarious in the wilderness.  It is sustained by endurance or miracle alone, and the very uncertainty of existence produces faith in deep measure.  The desert, far from being a place of hostile bareness, is a long-sought trove of spirituality. 

Uncertainty is everywhere.  We like the idea that we have things under control, but it’s largely nonsense. Seasons, weekends, celebrations and the other rhythms of life provide a lattice on which we hang our plans, dreams and emotions. Routine is an odd structure: at once the substance of culture and a source of great delight; yet at the same time it is a screen, barely separating us from the shocking truth that nothing is definite.  Uncertainty out of preference brings vitality to explorers, adds thrill to sport, and is the chalice of great achievement. Uncertainty as a condition, however, is less noble and somehow corrosive to the soul. 

So how will we respond to the uncertainty of our lives?  Some will live in fear of impending doom, always dwelling under the hanging blade.  Others will recognise with gratitude the wilderness into which they have been drawn; receiving uncertainty as a gift, adopting their proper stance of humility and a holy insecurity.  There is so much to learn in the desert.

Today I am celebrating a curious birthday, my 49th.  An inglorious numeral, resonating with uncertainty, it is notable mainly for what it is not. Try and concentrate on 49 without letting 50 enter your thoughts.  Neither here nor there, 49 could be the perfect age for a desert dweller.


2 thoughts on “The Desert of Uncertainty

  1. Milton S

    G’day Rod
    Isn’t it tragic that these so called experts with all the knowledge do not know the REAL person they are supposedly treating . I think maybe it is their sanity that needs questioning .
    Have a blessed birthday and keep powering on.

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