Summer 2011 #4

Days on end at the beach sounds like bliss, no?  We have been perched in luxury, my Favourite Wife and I, living at ease in the most wonderful of homes just a stone’s throw from sand, rock-pools and surf.  And a fairly lazy throw at that!  This idyllic setting could only be improved on by adding some fine food, some good conversation, some old friends, and some family.  Well, we had all that too!  Yet, amidst all this bliss, in crept an enemy of old, pitching for a fight. 

My adversary began his attack, as always, in a benign and subtle manner; presenting himself in a positive guise.  I’ve never ridden a surf board in my life (there’s a regret!) but I am mesmerised by the sets rolling in and the riders doing their best.  Parked on the deck with good old Bugger (yes, B1!), binoculars reveal the concentration collecting on tanned faces as the waves build.  I can also trace my Favourite Wife on her frequent walks along the length of the golden crescent of sand, eyes peeled for that elusive, perfect shell.  From dawn till after dusk the beach breaths in and out. The early morning joggers; the keen surfers catching a wave or two before the real work of the day begins; the life-guards staking out the safe and the perilous zones of surf; the families arriving to peg out their patch of virgin sand; the serious surfers who appear according to tide, not time, surveying the break with a distant, languid stare; the crowd of noon-day sun-seekers, young and old; and late in the day the walkers, briskly striding out the sunset, mirrored pink in wet-sand arcs. 

Everyone healthy, tanned, and fit.  Everyone energetic and
… able. 

Years ago I attended an astonishing open-air bird show at Taronga Zoo.  Sitting in a spectacular, steep amphitheatre overlooking Sydney Harbour, the khaki clad zoo-keeper would announce a particular bird of prey and before the words had left her mouth a giant avian predator would swoop startlingly from behind us, almost grazing our scalps with its very real talons.  It was electrifying!  My beach-side antagonist employed a similar tactic: just when I was most engrossed, serenely enjoying the sandy panorama and the action of the beach, in flew jealousy, claws and beak drawn with deadly intent.  I’d like to say I’d never met this foe before, but that would not be true.  Temptation is an individual concern: to some people chocolate is an addictive compulsion, a whole row is never enough!  I can easily stop at one square, but not so with jealousy.  For me an idle envious thought is never enough, I take the whole block. 

Within a few hours I was no longer content to covet the able bodies of a handful of surfers; not me!  I had begun to squint with green eyes at beach patrons as a class, then at all the fortunate people who could drive their cars to the beach, then at all the citizens walking around on two legs in the suburbs behind the beach, and before long I was engrossed in envious contempt for the entire population of the eastern seaboard!  It takes commitment to resent seventeen million people.

Jealousy distilled is the essence of ingratitude: an endemic discontent with the life I have been given.  Jealousy is lazy. It takes no effort whatsoever for me to descend into a slough of self pity; for me it is the obvious destination of an undisciplined train of thought.  Gratitude, conversely, is deliberate.  Gratitude requires restraint and application; but thankfully it has the almost miraculous quality of self-propulsion.  Gratitude builds up its own head of steam; once initiated it gains momentum and with just a modest nudge now and then it rolls over every bitterness in its path.  But I don’t think I could ever suggest ‘gratitude’ as the solution to another man’s woes.  It’s simply too trite to say, “Just be grateful for what you’ve got”.  I don’t presume to know another life.  Gratitude also needs a recipient: a nebulous thankfulness to the universe as a whole would not work for me.  It’s a purely personal observation, one in which I take no pride, but I have never felt any lack of tangible things in my world for which I can be immensely grateful; and I am doubly thankful to know the One from whom I believe they come.

Inside this same house is a very old Bible.  More than old, it’s antique.  When Captain Cook first visited this coast and found safe harbour just a few miles south, this bible was already well over a century old.  I guess it has witnessed the comings and goings of a dozen generations at least, and at the time of its printing I figure the number of my ancestors at over four thousand souls!  That puts perspective on life!  To recognise that humanity is somewhat bigger than my meagre experience of it is a helpful tonic for my rather obviously self centred malaise of envy.  Individuality seems a little overstated in the modern world; even if I don’t still ride a surf board (… which I never did!) there is a sense in which ‘we’ still do.  When I express gratitude I look up and away from myself.  The old, old book also hints at the momentary nature of this life.  It was good while it lasted, but the best is yet to come.

Rejoice!

Summer 2011 #3

It’s a startling sight, vehicles rushing past vertically instead of horizontally, water spraying from car wheels in incongruous directions; all viewed from an alien location three inches above the bitumen.  A startling sight to match the startling realization that Bugger can, after all, turn turtle. My power chair routinely leans back at the most alarming angle on ramps, causing bystanders to grab at the rear handles with a gratuitous expletive, thinking they might somehow save us.  I barely notice this alarming tendency nowadays, but I well recall the gut-curling, breath-sucking fear I felt in our early days together, especially when negotiating those troublesome ramps from roadway to footpath.  The feeling that we were about to tip was appalling!  Having traversed innumerable slopes since then I had developed what now seems a somewhat insane conviction that it was physically impossible to flip my Marque.

I do love the ride! After five months power-chairing with B4 I still relish a long foray into unfamiliar terrain.  Today, however, it’s getting tricky.  I am climbing a precipitous incline, gradually ascending the plateaux behind the strip of golden Sydney beaches where we have been holidaying.  These footpaths are certainly not ‘accessible’, and I’ve had to retrace my tracks to find an alternate route half a dozen times already.  I am encountering impassable obstacles, dead ends and impossible gradients on this narrow, windy road; and there is an unpredictable rush of traffic around its many blind bends. Heavy rain began falling about ten minutes ago, requiring a ninja-like flourish of the umbrella permanently sheathed behind my seat.  On a corner just a block from my destination the road is intersected by an even steeper incline.   The footpath ends with one of the dreaded ramps, awkwardly slanting to accommodate the new grade.  The pitch is too much … I am pushing right and up on the joystick … adjusting the speed setting to balance power and control …  B4 fights valiantly … I can feel the wheels beginning to slip on the wet concrete of the gutter … this incline does not feel good … oh no …

Bang!

(Bugger!)

And a startling view of cars flying horizontally past us. 

A firm harness that I designed a few weeks ago to lessen wobble-fatigue probably saved me from injury; but it also trapped me firmly to the asphalt.  With rain streaming into my clothing everywhere it shouldn’t, I had the oddest thought:  Will this play out like those appalling news items we see occasionally from the cities of the civilised world where no one stops to help a fallen human being?  No, this is Sydney, and the Aussie spirit is alive and well!  In no time a car and then a motorcycle rider stop, and soon enough these genuine blokes have done the de-turtling and B4 is back on six wheels.  Initially she won’t budge, warning lights are flashing in the controls. But then we are off; with shelter and warmth only minutes away.  Tomorrow morning our little grandsons will arrive and our family will be gathering.  And I’ve made it.  Phew!

It was a near miss, no doubt!  There must be any number of ways that the episode could have been worse, if not dire.  B4 has no more than a gash in her Tasmanian Oak arm rest; and I have little more than a grazed and stiff arm.  And like every close shave, it makes a cool story!  One to tell your mates, something to write home about … something to blog!  I wonder, why is it so much fun to boast about the moments when we narrowly elude catastrophe?  Why do men (and women?) bear scars with such pride; and so readily hold forth on the minutiae of their battle wounds? 

A great deal of life consists in pitting ourselves against the odds; and I wonder why?  The easy days, the golden days, seem rare enough; and they are hard-won.  If it’s not a struggle with finance it’s strife with illness.  If it’s not the quirks of technology that conspire our ruin it might be the forces of nature instead.  Conflict, contest, competition: our existence always seems to be a battle, one way and another.  Great art is most often the story of the Great Struggle.  A plethora of axioms and clichés was tersely summarised by one of our Prime Ministers: “Life wasn’t meant to be easy”.  As I write Queensland is in its third week of extreme flooding, lives have been taken, many are missing, and tens of thousands have lost their homes.  We reserve our most visceral admiration not for the skilled, but for the hero. 

Death and Resurrection play out in the petty and in the grand schemes of our lives in wondrous ways.  I’m not sure I understand it; but I do love the ride!

Rejoice!

Summer 2011 #1

A very good year, barely worn in, has given way to twenty-eleven (a jaw-breaking mouthful of a word), and I confess to being ill at ease with the New Year.  For one thing it’s a prime number, which is odd.  It doesn’t roll of the tongue.  It’s all shiny and new.  Or perhaps it’s something deeper…

Last year, twenty-ten, was terrific!  A bonzer, cracking year; a peerless age.  There were one or two difficult moments, but oh so many glory days.  It was roughly this time 12 months ago when good old Bugger and I first eyed each other suspiciously across the garage floor.  After just four months my operator’s license was upgraded from manual to power (R2-B2), and I steadily progressed from Bugger #1 through B2 and B3 and on to the celebrated B4!   It’s amazing to think that the contraption that once scared the daylights out of me has become the vehicle of so many wonderful encounters with family and friends.    

I tallied up the miles last week, wondering just how far the various incarnations of Bugger and I had travelled in 2010.  A little over 20,000km by my reckoning, and most of that on public transport.  Not bad, not bad at all!  Finding that B4 and I could roll onto busses and trains was the discovery of the year.  The sense of independence is intoxicating.  Back in November I managed to travel by interstate rail on eight consecutive days (and I’ve been trying to casually drop that statistic into a blog ever since!)  So tell me now:  How cool is that?

I love travelling.  In fact I adore it; but only when it has a purpose.  The Grand Tour was undoubtedly the month I spent in Central Australia pushing B1 through the red sands of the Gibson Desert (Kurta, yirringkarra-rni!). Worshiping with Aboriginal brothers and sisters before dawn on Easter Sunday is an indelible, priceless memory.  The purpose of every journey (other than a couple of mongrel trips to doctors and hospitals) has been to be with the people I know and love.  It’s who we have, not what we have, that matters in life. 

2010 was the year my Favourite Wife and I found Snow!

2010 was the year of the Shed.

2010 was also the year to surrender my licence; a moment that loomed with unreasonable dread, a monstrous shadow cast by a meager creature.  In the event I found that wisdom welled up from who knows where, and I could see with absorbing clarity that “Surrender is an ultimate proof of possession.  It is only that which I can freely give that I have ever truly held” (The Gift of Loosing Things).   Learning the graceful art of surrender has proved essential; and a continual challenge.  Today for example, New Years Day, I capitulated and employed a robotic, computer-generated voice for the first time.  Plenty of blog-fodder there in coming months I suspect!

From time to time in life I have felt that I must be the most fortunate man to have ever walked the green fields of this good earth.  The force of this awareness is hard to describe.  I don’t simply feel content with my lot; this is not mere satisfaction; nor good luck.  I feel a sense akin to guilt at being so privileged, at receiving such blessing, at providence having been so opportune.  I feel it still, even today. 

When we first married I bought a large ‘minute journal’, bound in green leather and suede, and began to record the seasons as they came and went.  The funny things our children said, the achievements of our family, and our dilemmas as well.  I’ve sometimes rehearsed in my mind the acrid stench of smoke and the desperate rush to retrieve a single possession, our treasured Green Book, seconds before the burning house comes crashing down!  Random readings are a feature of family gatherings, and they are a nourishing delight.  In every season, the good and bad, for better or worse, for richer or poorer, in sickness and in health, we seem to have done well.  A life so rich that even the bad bits are good. 

I have never felt as alive. I am enjoying life so much that I feel in danger of crossing over an invisible line beyond which one might somehow take a pathological pleasure in illness itself. When you discover freedom in the midst of confinement it comes like a slow dawn.  Your eyes almost perversely seek out the darkness, but there is soon none to be found. That’s the great thing about light, it utterly dispels the night.

So, maybe there’s hope for twenty-eleven after all?

Rejoice!

Summer 2010 #3

“It takes me about an hour and a half to wake Adam up, give him his medication, carry him into his bath, wash him, shave him, clean his teeth, dress him, walk him to the kitchen, give him his breakfast, put him in his wheelchair, and bring him to the place where he spends most of the day with therapeutic exercises”.  At the height of his career, author Henri Nouwen moved from his post at Harvard University to a community called Daybreak, near Toronto, to take on the daily, mundane chores related above.  He ministered not to intellectuals but to a young man who is considered by many a vegetable, a useless person who should not have been born.  Yet up to the time of his death Nouwen insisted that he, not Adam was the chief beneficiary in this strange, miss-fitted relationship.   

This is my favourite passage from author Phillip Yancey*; and essential reading at this topsy-turvy time of year when the world goes mad.  Cynicism is one of my greater failings, and I can feel a Yuletide relapse coming on fast!  Christmas could be – should be – the richest and best moment in our calendar.  Our carols are songs of gratitude, reconciliation and spiritual depth; and yet Christmas Bells no longer ring from cathedral spire or even from reindeer’s bridle, indeed the modern peal is heard from the cash-register alone.  Somehow the season of Peace & Goodwill has been lessened to merely Loud & Mercenary.

Just today a friend pondered the strange compulsion many of us feel to have the windows washed, the bathrooms spotless, garden’s weeded, and the dog clipped and groomed for Christmas lunch.  Why this frenetic, illusory craving for Utopia?  It gets worse when the guests arrive: not only must our home and table sparkle like the star atop the tree; but every friendship and family bond glistens with a rapidly applied layer of unsullied purity.   Crikey!  No wonder some folks are looking for a side serve of Valium with the ham. 

The New Testament (strangely sidelined) has more than a little to say on the subject of Christmas.  It speaks a narrative not of fulfilment but of yielding; it tells of a day when all was given, and nothing received; a day of poverty and humility; a day that had more in common with the ordinary weeks of ordinary people than with the curious rites of December 25^th…

Your attitude should be the same as that of Christ Jesus:
Who, being in very nature God,
did not consider equality with God something to be grasped,
but made himself nothing, taking the very nature of a servant,
being made in human likeness.
And being found in appearance as a man, he humbled himself
and became obedient to death— even death on a cross!
(Philippians 2).

A fair bit has changed in my world since I wrote “Christmassed!”, my 2009 Yuletide rant.   It’s easy enough to criticise the outside world, but it’s my own soul that needs work.  I’m looking for an inner Christmas, an incarnation.  This Christmas, for me, is an opportunity to embrace the frailty of life.  It’s about becoming flesh, surrendering my deeply held notions of invincibility; adapting myself to the obvious realities of mortality.  It is also about accepting the God-given humanity of my commonplace world.   Not grasping for that which is lovely, but embracing those whom I love.  The story of Nouwen and Adam is a parable of Christmas:

From the time spent with Adam, Nouwen said, he gained an inner peace so fulfilling that it made most of his other, more high-minded tasks seem boring and superficial by contrast.  Early on, as he sat beside that silent, slow-breathing child-man, he realized how violent and marked with rivalry and competition, how obsessive, was his prior drive toward success in academia and Christian ministry.  From Adam he learned that “what makes us human is not our mind but our heart, not our ability to think but our ability to love.  Whoever speaks about Adam as a vegetable or animal-like creature misses the sacred mystery that Adam is fully capable of receiving and giving love.”  From Adam, Henri Nouwen learned – gradually, painfully, shamefully – that the way up is down.  The gospels repeat one saying of Jesus more than any other: “Whoever wants to save his life will lose it, but whoever loses his life for my sake will find it.”  Truly, the way up is down.

Rejoice!

________________________________________________________  

Summer 2010 #1

Peering down through glass doors into the lift-well I could see a fellow in a wheelchair. The elevator was obviously stuck, but he waved up at me, seeming more amused than worried. I tried to signal something reassuring to him, and rolled off to find help.  He must have pressed a few more buttons, or perhaps the lift just came to its senses; either way he was rolling out when I rolled back. A bright, indomitable sort of bloke; he was soon urging me to take my chances in the lift. The machinery had issues only with going up, he assured me, not with going down. It was either give it a crack, or miss the train waiting on the platform below…

Up until today I can’t remember that I have actually conversed with a fellow “wheelchairperson”. Which sounds odd I’m sure. Aussies abroad are drawn toward one another by their shared accent; birds of a feather flock together; but disability holds to different rules.  A close friend is an amputee, and he once explained to me the awkwardness of chance encounters with strangers in the same state.  I know now just what he meant:  such meetings produce a strange pressure.  Beyond the superficial layer of immobility, do we actually have anything in common?  What is this expectation that we should automatically associate?  In such moments many people avoid eye contact altogether.  Being obsessed with independence I find the idea of an ‘association of dependants’ somewhat unattractive.  Perhaps ignoring the obvious connection is a style of denial.  In five months on busses and trains I have seen just five wheelchairpassengers; and, to my shame, I have done no more than smile at any of them.  Less, at times.  But this, it seemed, was going to be a day of a different sort…

A small-framed, anxious man in a chair boarded the train with assistance from a platform attendant, and immediately implored that the doors be kept open. In obvious panic he wailed almost incoherently, loudly fearing that he would be unable to breathe once the car was sealed.  But electric train doors do close, and they did, and as we pulled away from the platform this poor fellow writhed clutching at his throat, making the appalling noises of suffocation.  His wheelchair was old and battered, his appearance unkempt, and his clothing dishevelled.  I was closest to him (in proximity and perhaps in other ways…) and I sensed an assumption amongst the rest of the carriage that I would be the obvious choice to assist.   I did my best, I called to him, I got as close as B4 would permit, I held his hand and shoulder, trying to reassure but with little effect. As the doors opened at the next station my fellow wheelchairperson finally calmed down somewhat, and another passenger summoned the driver.  My friend stated with incongruous composure that the only way he could continue to his destination was if he were to travel in the driver’s cabin. This, the driver explained with firm kindness, was not going to happen. Did he wish to leave the train?  No, he was ready to try again. Our man kept his composure from then on, but retreated to a corner of the carriage and withdrew into himself. Some people lead sad, sad lives…

I lost count at fifty, but I’m sure there were a hundred people in power wheelchairs, and as many again in manual chairs of every kind. This was Melbourne’s Federation Square; and quite accidentally I was in the middle of the “International Day of People with a Disability”.  Wheelchairpersons as far as the eye could see, in every permutation imaginable; it truly was a rousing sight!  Men and women were there because of, not in spite of, their disability. Folks were greeting one another warmly; eyes met with unguarded confidence; everywhere there was a buzz of affirmation.  Volunteers manned booths demonstrating all manner of accessible sport and recreation. Bands played, TV crews tried to catch the vibe.   An engaging wheelchairperson named Rod (see, we had more than one thing in common after all) explained for my sports-challenged benefit how a game of wheelchair basketball was progressing.   He pointed out the players who had represented Australia at the Paralympics, and tutored me on the admissible number of “able-bods” who can make up a team.  I chatted easily with several: and never, not once, about our wheelchairs…

I was there to meet a friend (an able-bod), and as we sat in a Cafe my eyes drank in the sight of numerous power chairs coming and going. People just like me!  Ordering coffee, sitting at tables, some were in pairs, some with a walking friend, some in family groups. A vital looking man in a power chair was accompanied by his wife and two young daughters and they looked so at ease…

I’m nowhere near as apprehensive about my wheelchair as I was when B1, “Good old Bugger” first appeared in our garage twelve months ago. Nonetheless I still take a deep breath many a time before I venture out in public, especially when I am meeting family or a close friend. But today in Fed Square it’s the able-bods who are odd. I’m a fish back in water. No longer alone. This is great fun!

For today, at least, normal has wheels.

Rejoice!

Spring 2010 #13

There are seasons of life that must be faced alone; times when, in spite of our urgent longing, the counsel of wise men is locked away.

In the difficult seasons of life a listening ear can be hard to find.  How often have we watched that absent, distracted look on someone’s face, even while we are unloading our grief?  With intense, private concentration they are busy preparing a tale of even greater misfortune to trump ours.  It’s so frustrating!  But, I must admit, once the crisis of loneliness has passed (as it will) I have generally been grateful that I did not say too much.  There is something holy about loneliness, and holding one’s council is the sacred rite of solitude. 

Author and Priest Henri Nouwen wrote that life’s great and unavoidable journey is from loneliness to solitude.  Loneliness, he says, is inescapable.  It will come to us sooner or later through the circumstances of life: somehow every one of us will be abandoned to ourselves.  Gradually, though, we might move from lonely desperation to discover that we are merely alone.  From there it is possible to reach solitude; the place of unique and singular being.

I have never felt loneliness to match the past three months; there is no avoiding the truth: the going has been tough.  But neither have I felt such fulfilment in seclusion.  The desert is like that, it’s a place of extremes. Before I had turned twenty I was traveling one day with two aboriginal men through rough spinifex country.  On the second day of our journey we had driven for hours at walking speed, labouring in low range through steep sand, each spinifex clump twisting the groaning chassis.  I was behind the wheel when we were startled out of a trance and halted on a wide sandstone shelf.  The track we had followed all these hours was gone.  Briefly (very, very briefly) we were lost!  My two companions were gone only moments before returning with much gesturing and discussion; evidently the track was found.  In that short pause my young, impressionable mind glimpsed the extreme scale of the wilderness we had traversed within the vastness of our continent, and the minute size of us three in our Landcruiser.  Frightening and exhilarating, it was a shuddering glimpse of real isolation, the essence of which has never left me. 

In last week’s chapter I wrote about the frustrations of three months of heightened uncertainty; but I fear I overindulged the graphic description of my predicament, and understated the wonder of wilderness.  It’s true that medical opinion has been divided, uncertain and unhelpful; and it’s true that therapists and support agencies seem to have taken the easy path and opted out for the time being.  I don’t know what’s wrong, and I don’t know who will help.  But what of it?  I am torn between the desire for certainty and the wonders of not knowing.  There is a time for each, but I know I would rather be alone with the Almighty than be surrounded merely by the voices of men.   

True to their name, deserts are deserted.  They are places of intensity, hostile in their climate, vast in their remoteness.  Perhaps more than anything else deserts are places of solitude, even of abandonment.  The desert is also a place of astonishing vision. Bone dry air allows perfect visibility over immense distances; you feel you can see the very leaves of a gum tree on a mile-away ridge. Aboriginal brothers, with eyesight that defies belief, will see a kangaroo afar off when all I see is rock.  There are colours in the desert that will never be seen elsewhere; reds and purples so vibrantly bizarre that photos invariably look doctored.  But I have sometimes watched Uluru and Kata Tjuta from the dusk of an isolated dune; and it is all very real. It is no different in the desert of the soul; there are hues and textures unseen in the burly of urbanity. There is a subtlety to the heart’s palette and a depth of field that can hold me captive for hours.  Deserts are rarely places of physical comfort.  It’s either baking heat or frost.  Dust dry or flood bound.  Of course there are monsters in the desert too. Strange creatures found nowhere else, marsupials of curious habit, lizards of more curious appearance.  And there are monsters to imagine as well; beings that dwell mostly between thought and reality, quite invisible to anyone but you.  Most desert monsters are nocturnal, never quite revealing their terrible form.  Finding a lone wanderer they wait, and they stare.  Life is scarce in the desert; it’s just too hard to keep on living.  Yet life is nowhere richer.

I am afraid that I will be left alone; that no one will hold my hand.  I have found a path too narrow for two, but even still there is One who lever leaves. Despite my need for family and my dearest friends, I need also to be alone; unencumbered and aware, because only in solitude do I find myself equipped for the day. To borrow words from Charles Cummings, another monastic writer, “I resolve to live in grateful presence in the desert of my life”.

Rejoice!

________________________________________________________

PS…

More than one correspondent has castigated me for the barrage I let loose last week against that poor, defenceless number: 49.  It is in fact an idyllic pair of digits, the square of the perfect 7.  I stand corrected, and I am now relishing being 49, the perfect age for a desert dweller!

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 49^th.  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.

Rejoice!