Spring 2010 #11

In the end the octopod was too strong.  When I woke on the fifth morning to find that the abominable creature had drawn blood, I knew that we would each have to be released: me from the appalling clasp of the breathing mask’s bands, and the monster back to the deep from which it had come.   I had the vile squid shipped back to its home, and happily discovered that there was a local distributor of respiratory equipment.  This time I enquired before making an appointment:  “Are your room’s wheelchair accessible?”  Yes Sir, they most certainly are!

So the single step outside the freshly painted storefront was a little surprising.  Affixed to the door was a sign, or at least a piece of cardboard, on which was written:  If unattended please go next door. 

Next door proved to be a Party Hire store in the same building.  I dutifully enquired and a sales assistant dressed in a frankly scruffy Party Hire uniform instructed me to go back to the first door where she said, disconcertingly, that she would meet me.  Pointing out the front step problem, an alternative was proposed which was to follow Scruffy past the racks of helium balloons and face masks (of a different kind), down a corridor, through a store room, via a loading dock, into an office, past the table and chairs of a small meal room, finally emerging in the respiratory display room, freshly decorated in subdued medical tones and complete with numerous glass busts bearing various facemasks (of the correct kind).  Lo and behold, some familiar faces as well!  Last week’s breathlessly happy couple, still fondling their new breathing machine, were grinning idiotically down at us from the wall. 

The business owner, a formidable man attired to match Scruffy, came to introduce himself.  He turned out to be something of a self taught expert on breathing equipment on account if his own experience with sleep apnoea.  Thankfully an actual, trained consultant appeared, the boss went to unload a truck, and I was introduced to a new and more likable animal: a mask with surprisingly little Velcro and just the barest touch of wet suit.  Its minimalist styling allows one to read with one’s glasses on, itch one’s nose, and even chat to one’s Favourite wife a little.  No sea monster; this mask is more of a domesticated aquarium being; and we are getting on extremely well!  And so the week began.

To finish the week I made a dash to Melbourne .   Travel is usually galvanizing, but this particular early morning train seemed to be dragging a sombre cloud.   An obstinate, oppressive pall held my thoughts.  ‘Why so downcast, O my soul?’   Was it the weight of decisions that were approaching?  Or more likely the knowledge that yet again I was to encounter a new disability appliance; another threat to the stoic independence on which I thrive.  I was heading south to inspect vehicles in which Bugger (That’s B4, my newest and best power chair) and I can ride together.   Each new strata of special equipment is as intimidating as the last, and must be pierced with new reserves of courage.  As the train ran onwards I read the psalm set down for that morning, but I was unable to experience any hint of its promise: 

The Lord is my shepherd, I shall not be in want.
He makes me lie down in green pastures,
He leads me beside quiet waters,
He restores my soul.

Whatever the reason; the happy wanderer I was not!

The vehicle dealer had kindly offered to meet the train. Our first stop was a coffee shop; which was a little surprising!  Very welcome though, and a good chance to get to know this remarkable man.  An energised fellow of 70 years, whose son’s wheelchair needs had begun their involvement in vehicle conversions years ago.   For the next three hours we were in and out of vehicles: riding ramps, buckling belts, tugging tie-downs. We took vehicles on long and short test drives, comparing ride, visibility and configuration. On and on marched a dizzying  array of makes and models, pricing and options.  And then we were done! 

But our day was not over, more surprises lay in store.  At my host’s insistence we walked (and rolled) around the block to a bustling, airy, delightful Italian restaurant where my new friend was obviously a frequent patron.   We ate bruschetta, dips, olives, zucchini, eggplant; we sipped red wine and strong coffee. We found we had much to discuss as parents of children with special needs.  The world didn’t seem so fearful after all.  And right then, amidst the deliciously unexpected meal, I recalled the words of the psalm I read on the train in my blue funk:

You prepare a table before me in the presence of my enemies.
You anoint my head with oil; my cup overflows.

 

 

Rejoice!

 

Psalm 23

The Lord is my shepherd, I shall not be in want.
He makes me lie down in green pastures,
He leads me beside quiet waters, he restores my soul.
He guides me in paths of righteousness for his name’s sake.
Even though I walk through the valley of the shadow of death,
I will fear no evil, for you are with me;
Your rod and your staff, they comfort me.
You prepare a table before me in the presence of my enemies.
You anoint my head with oil; my cup overflows.
Surely goodness and love will follow me all the days of my life,
And I will dwell in the house of the Lord forever.

Spring 2010 #10

Early afternoon.  I’m looking for a way into the healthcare facility where a script has been filled for a breathing machine. It’s an older style house on a busy road with front steps that Bugger and I won’t manage, so I ring the number on the appointment card. Apparently all I need to do is go round the block to find a back entrance. Once inside, via an awkward wire gate and narrow brick garden path, I find more steps!  And so it seems the appointment will be conducted in the kitchen come waiting room. If it weren’t for the fact that I can get this far with my walking sticks I guess we would have convened in the garden. I express my curiosity about a medical building that doesn’t cater for wheelchairs, but the practitioner doesn’t seem to share my surprise.  I’m glad there are no other patients here to observe my volatile mixture of apprehension and cowardice.

“A beautiful addition to your lifestyle…”  declares a brochure on the kitchen table.  My curiosity is aroused. While my medical scientist is fiddling with an array of intimidating face masks I browse the literature.  The pamphlet features a dashing middle-aged couple sitting immaculately on elegant furniture, in a home straight out of Vogue magazine. With rapt attention and face-splitting smiles the man and woman are examining a sparkling new breathing machine!  Gosh!  Breathlessly I read on, eager to share in their new-found joy.  Meanwhile the technician works on her pile of tubes and leads, apologizing that the breathing machines we are going to trial will have to be set up on the floor, which I suspect is not best practice. Surreptitiously I type some phrases from the laughably inane brochure into my phone: 

A beautiful addition to your lifestyle…
This elegant design package…
Its exciting array of features is the product of global research…
Its good looks will complement your bedroom decor… 

I note they don’t mention the look of the mask and tubes, which would complement the decor of an operating theatre.  It’s a breathing machine, for goodness sake!  Someone is being had.

But now it is my turn.  A nose mask (I didn’t know there was such a thing), is held firmly in place by half a wetsuit worth of rubber straps and velcro. “How does that feel?”  What a stupid question.  I just nod, although I’d like her to know it feels a lot like having your teeth flossed by an octopus.  She presses an innocuous button and I am instantly and alarmingly transformed into a human balloon.  Soon I’ll be an ornament for a jumping castle. I foolishly open my mouth to speak.  This is a mistake, and as my lungs collapse I realise she actually works for the CIA. What can I confess to?  Will she stop if I do?  I will say anything.  Anything!  I plead guilty, “Enough! Stop! I admit it, I am a spy!”  But right then the nose mask slips, creating some if the rudest noises I’ve heard since primary school. 

More masks and wetsuits.  More button pressing.  More from the ‘exciting array of features’.  (The pamphlet said nothing about water boarding!) “Some people find this takes a little getting used to” the secret agent murmurs in bland understatement.  Translation: “You’ll crack. They all do, sooner or later”.

Late afternoon.  A coffee shop, a family birthday party, dinner in my motel room. I keep my bravest face carefully fixed, not letting on that I’ve had a brush with an undercover operative, or that there is an instrument of torture waiting silently against the wall.

Late evening.  The moment of truth can be postponed no longer.  Alone at last in my motel room I am going to unleash the velcro octopus and press the on button by myself. I’m glad I am not at home.   My first night of assisted breathing will be a private fiasco. Good night cruel world!

Very late evening.  No, it seems privacy is not to be granted. Finding no power point remotely near the bedside, I consider various alternatives. Moving the bed?  Too hard. Remaking the bed the other way around?  There is a point across the room – but no, that’s still too far. So I ring reception and come clean to a total stranger. I have a breathing machine. Can you lend me an extension cord?  Certainly we can sir, but if you just ease the bed forward and look behind the mattress I think you will find….. Aahh, there it is. Good night cruel world.

Very, very late evening.   I’ve left my glasses on. Off with the octopus and start over once again. Good night cruel world.

Neither early nor late. Grand old Duke of York time. The twilight zone. I am in the grip of an interminable, cyclic nightmare, playing from start to gruesome end with every black-box breath.  My name is Bond, James Bond. I am being smothered by a gigantic sea monster. Throttled by an enormous squid wearing an extremely tight wet suit. This is truly horrid.

Extremely early. I take the damn thing off. 

Minutes after extremely early.  Damned if I’ll surrender!  KBO!  Back on it goes.

Very early.  Am I hallucinating, or is the obsidian sith lord in my bed?  Darth Vader?

Early.  Dawn in fact.  Hey…. not so bad.  I might even be asleep, but I’m trying not to think about that in case I wake myself up.

Rejoice!
(sort of)

Spring 2010 #9

On school mornings my limited contribution to getting our fifth daughter out the door culminates in a wonderful moment when Bugger and I roll down the driveway, hot on the trail of my Favourite Wife in her cute little car. Cassie has just turned ten. She loves school, but she also loves every smallest alternative to school that presents itself between 5.45am when we rise and 8.00am when we start the car. Her head-strong creativity is exasperating and, it must be said, sometimes nigh-on intolerable! Just as they start down the road I pull alongside, chair set to its fastest speed, and in the thirty or so feet it takes for the car to accelerate away Cassie and I exchange our top-secret “Blue Team” handshake through the passenger’s window (the Red Team, by the way, is made up of my Favourite Wife and our puppy. They always loose, Blue always wins! Life is so simple at ten). Then they are away, little one leaning most inappropriately out the window waving frantically and cupping her hands to yell, “I love you Dad”, over and over as they disappear. I head back home (wondering what the neighbors make of this routine ruckus), and round about then the sun will crown the steep green hillside, its first excited rays striking towering gums and searching out a few stray ‘Roos that have briefly paused in their breakfast grazing to consider the spectacle playing out on the road below. I catch myself laughing out loud now and then (which must aggrieve the neighbors yet more); it is a moment of sheer, pure, exultant joy. And it comes around most days!

And just a fortnight ago I was scooting along a stone breakwater on the New South Wales north coast, my grandson buckled firmly on my lap, his mum and dad trailing behind us with their newest one in a stroller. Shrieks and giggles as we dodged the spray and splash of ocean waves crashing against the rocks below us. We looked for crabs, we tried to keep warm and failed to keep dry!

And four nights ago my son, our daughter in law, two more daughters and a boyfriend joined me around a Wagga Wagga pub table for a great night together on the evening of an out-of-town medical appointment (about which I shall not speak!).

And yesterday I trained up to the south coast to be with my fourth daughter and her husband of only six weeks. My girl and I spent a couple of blissful afternoon hours exploring the rainforest trails along the spectacular escarpment on which they live. Rough gravel, mud holes and gradients very nearly too steep for Bugger to go down – let alone back up! But there was a distant waterfall that she just had to show me; and we would be rescued … somehow. How much fun; bouncing and slipping around, overheating motors cutting out, and my little girl valiantly pushing us back uphill to the point of near exhaustion. It’s been too long since we’ve gone adventuring together; or caught frogs, or thrown stones in ponds, or since we laughed quite so much together!

And this morning the whole world, it seems, is celebrating last night’s announcement of my third daughter’s engagement to the young man I like so much who was last week merely a boyfriend. We should have been at church but there were messages, phone calls, emails, facebook, people! It’s too much fun!

And now, before I head off for the home-bound train, we are sitting down to a gourmet meal of grilled venison: hunted, dressed, marinated and cooked right here on the mountain during my stay. We heard the rifle’s crack in yesterday’s early hours; a sharp report echoing through cliff and timber, scattering flocks of birds into the air.

And in a couple more days we will all be back around a table somewhere in Wagga, celebrating my daughter’s twentieth – under strict orders not to celebrate the engagement. There will be another party for that!

And these are high points, mountain tops, glory days.

And, of course, there is just as much that could be written about the valleys in between. The days I spend alone at home without the buzz of trains or busses or cafes or friends to draw my eye up can be a challenge, indeed.

And sometimes I fall to wondering: for how long can the good times roll? Is there a turning point in the track, a fork in the road beyond which the joy of experience cannot be sustained? Is the exhilaration of life only for a time; or does the landscape of mountain and valley continue through each and every season? I do not know the answer to my question.

And sometimes I am fearful, chilled by what the answer might contain.

And sometimes I realise that it would take faith to live well, no matter down which path my question finds its truth.

And I read, “Do not be afraid, little flock, because it is your father’s good pleasure to give you the Kingdom”.

Rejoice!

Spring 2010 #8

Now and then a new wind blows, a moment arrives, something shifts irrevocably in the way the world appears; or perhaps in the way we appear in the world.  Today I met Christopher, a youngish fellow I see often enough, cruising around town on one of those battery powered mobility scooters.  Chris’s Gopher is distinctive.  For one thing it has a dog; a surprisingly large animal whose obvious attachment seems to be divided in equal parts between master and scooter; and it also has a rather expansive canopy among its several add-on accessories.  I’ve occasionally come across Chris at the Doctor’s practice (where scooter and dog come happily – if incongruously – right into the waiting room).  Today we met at the Rehab clinic that I frequent. In the waiting room, of course!

The new wind started to blow later in the afternoon when I was rolling home on Bugger, and found myself travelling in a curious convoy with dog and driver for several blocks.  Now, I must confess, I don’t particularly like those scooters!  They rush along footpaths at ungodly speed, their driver’s faces fixed in grim determination to make landfall by dusk – or else!  Whereas I, in my entirely dissimilar battery powered wheelchair, conduct myself in an altogether more civil manner.  I am, by my own admission, vastly superior to the scooter mob.  But, to be honest, I wasn’t just immersed in judgemental supremacy; I was uncomfortable.  A year or so back, when I was still a bona fide pedestrian, I had occasionally offered Chris a friendly smile, or even a few brief words.  But – and I am ashamed to admit this – it was an entirely different experience to meet eye to eye and wheel to wheel on a very public street corner. 

Chris doesn’t speak, and as we slowed for successive intersections, making way for one another, he made repeated gestures indicating that he was thirsty.  Then we came to a corner cafe, and I realised that his gesturing was an invitation for me to join him inside for a drink.  Me, him, our wheels and the dog. So there we were … …  and I made my excuse: I was hurrying home in time to meet a friend coming to spray our weeds in just a few minutes. 

I travelled half a block further on my own, and then I backtracked to the Cafe and wrote on Christopher’s note pad a time and day next week for us to meet back and the same spot for coffee.  He was delighted!

Elitism, condescension, superiority, segregation, snobbery, racism; call it what you will, there is something sinister that universally divides man from man.  Sadly I feel its appeal.  Why are our differences from one another more enticing than our commonality?  Where does this need to set ourselves above other people spring from?  Perhaps it takes a lifetime to meet ourselves.

Another odd thing happened this week. Waiting for an end-of-day bus a scruffy, agitated man began calling at passengers at the busy stop; his language obscene and intimidating. He turned his attention to a boy in school uniform, a mild looking fellow in his early teens. This lad was visibly afraid, more so when the disturbed stranger strode right into his space and launched into an incomprehensible, offensive rant.   So I drove Bugger in between them and held the man’s manic gaze; insisting he leave the boy alone. He was livid, but he backed down, and I shadowed him at a distance until the bus took us all away.  I suspect the reason I succeeded, and why he didn’t take a swipe at me as I thought he might, is that in a weird manner we were no threat to each other. It may be reading too much into the moment of confrontation, but I felt there was an instant of mutual recognition, a disarming and pacifying glimpse of the team colours we share in some strange way.  Disability in all its diversity can have an oddly unifying effect.  After all, aren’t we each dealing, as best we can, day by day, with our own unique patch of human frailty?

Rejoice!

Spring 2010 #7

The distant thrum of the diesel-electric engine. The sway and rattle of the carriage. The endlessly progressing vista … now coastal grazing land, greened by our best season in a decade … now a banking river … now a stand of paperbark, ringing a tannin-stained lagoon.  Clanging bells of a level crossing retreat as fast as they appeared … now cattle idling beside dams brim-full with waterlilies in spring flower … now chugging switchback bends through rocky hills.  Suddenly the startling pitch of a blackened tunnel … now mystic runes graffitied on the forgotten brick of factory walls … now the voyeur’s glimpse of unkempt, cheapside real-estate that a railway window uniquely affords. 

Forty-something hours spent absorbing this sensory feast has a hypnotic effect, lulling one into some serious introspection.  I can’t help wondering if there isn’t something more than a little frenzied, manic even, in all this travel?  Six months ago it was several weeks spent in the Gibson Desert, pushing my manual wheelchair (good old Bugger!) to the limits of our combined endurance. I’ve not counted the trips since then; but this week I am notching up a rather stunning 2900km by rail, taking in the length of two States, our denomination’s annual conference, a flying visit to my daughter and her boys, and a wonderfully rushed weekend in Melbourne with my Best Girl.

The two most obvious dimensions of motion seem to have engraved themselves on my subconscious; embedded beneath every thought. Speed and Direction. How fast are we going? When will we get there? Where are we headed? What’s coming next?  Are we there yet?

Is it just the mesmerizing effect of locomotive clickety-clack, or are these traveller’s queries not also the big questions of life?  Such thoughts are often in all our minds, sometimes appearing as vision and anticipation; sometimes as fear and trepidation.  At this junction in my life they have a new poignancy.  I can’t but wonder….. What does my future hold? Where am I heading? How fast am I going? How much of my current wander-lust is born from a ‘now or never’ paradigm?  And is that prudent or impetuous?  I once boarded a train in Tamworth to farewell a friend, and soon discovered the need to ring another friend to rescue me from Werris Creek.  It must have been an emotional send off!  But I do feel like a passenger trapped unwillingly on a nameless train to an unknown destination.  Are we there yet? 

Coincidentally (or perhaps providentially) while on board I have been reading of two travellers in the ancient world.  These two men of calling, Paul and Jonah, centuries apart, were also ‘trapped unwillingly’.  Travelling by sea they had both, for different reasons, become subject to forces far beyond their control. But where Jonah (soon to be in the belly of the whale) is fearful and self-absorbed; Paul (in Roman shackles) is purposeful and assured. As the stories progress the two men deal with destiny very differently.  Jonah, who was given great opportunity, seems unable to shed his own neediness, and his world becomes starkly self-centred and contracted.  His final words vividly display his inability to re-align himself with a changing and grace-filled world: “I am angry enough to die.” How tragic!   In contrast Paul – who faces imprisonment and eventual death – remains assured and fruitful.  I find his determination and his generous spirit so appealing! Although he is held captive by Roman soldiers, he refuses to limit himself to their confinement, often describing himself instead as “a prisoner of Christ Jesus”.  How magnificent!

With just a few hours left before my Favourite Wife joins me on the train for a weekend celebration of our 21^st Anniversary I posted this on facebook…

From this morning’s Sydney Morning Herald … Tim Fisher’s list of luminaries who have boarded the broad-gauge rail at Albury Station:  Mary McKillop, Don Bradman, Ben Chifley, Billy Hughes, Robert Menzies, Dame Nellie Melba (both vertically and horizontally), General Douglas MacArthur, Mark Twain ……… and ……… at 3.16pm today ……… KAREN ALLEN!

And a little further down the track the loud speakers crackle to life, “Good afternoon Ladies and Gentlemen, CountryLink regret to inform you that flood waters have cut the rail line to Melbourne and this train will be terminating at the next station”.  Heart break! It wasn’t to be.  Our much anticipated Melbourne jaunt never happened; and although a cab driver made a valiant attempt to ford numerous turbulent crossings, we were to remain flood-bound, stranded in different towns for another night. 

So, you see, even fastidious attention to speed and direction is no guarantee of destination.  Are we there yet?  Indeed if I look too deeply into what cannot be seen, I might miss the view from the train. Just keep travelling!

Rejoice!

Spring 2010 #6

For starters, he’s not blue at all.  It’s a white person on a Royal Blue background.

The ubiquitous if incorrectly named Little Blue Man is a friend indeed, and unless you have need of his services you may not fully realise his prevalence.  It’s like buying a car: once you settle on a particular model they suddenly seem to be everywhere!  There are thousands upon thousands of Little Blue Men; in fact I suspect he might actually be the mythical  ‘Common Man’, simply because there are so many of him.   He is nigh-on omnipresent; and every Little Blue Man is a gift. They are personal invitations, carefully placed by anonymous civil servants with me in mind.  They beckon welcomingly, trail markers on my journey. While the greater horde of (unwashed) pedestrian humanity contends with crowded steps and busy footpaths; I have a VIP pass to priority parking and purpose-built ramps. I have been lifted from the nameless throng; appointed to a path of privilege.  An un-numbered host of beacons confidently declare their message: “Roderick Allen!  Welcome!  We have been awaiting your arrival, we are here to serve!” 

As an apprentice carpenter I was regaled with tales from ageing Public Service tradesmen about extraordinary behind-the-scenes preparations for the visit  of Queen Elizabeth in the early 70’s. Touring Australia to open the Sydney Opera House, the Majestic Itinerary was  extensive.  Public buildings were renovated, so the old chippies claimed, in the most exclusive manner. Only the corridors down which the Imperial Feet were scheduled to walk needed painting; and on each such corridor one single loo was completely refurbished in readiness for the Royal Flush.  While my crowd-drawing capacity may not quite rival Her Majesty’s personal magnetism, I still I know exactly how she felt.  Everywhere I go I am spoiled with the best of everything.   I enjoy reserved seating on every bus; neat little private lifts on train stations; and (best of all!) my own private washrooms across the nation which are invariably clean, spacious and elegantly appointed.  As a member of the Royal Family, the path marked out for me by Little Blue Men attracts an entirely elevated level of courtesy and cheerfulness from each person I meet.  Nothing is a problem; everyone – civil servant and commoner alike – stands ready to help with a generous smile.

But it wasn’t always so.  This innocuous blue and white cameo once intimidated me in a way that nothing has since great big enormous high school kids scared the freckles of my primary school face.  When we moved house just over a year ago an Occupational Therapist provided us with a list of features to look for.  Things like wide corridors, no steps, good doorways, and other details that were essentially about wheelchair access. But I had no wheelchair, and I wouldn’t for the next six months.  In those days I was deeply troubled by the Little Blue Man.  I turned involuntarily away when he came into my field of vision, and the idea that I might one day need his company was fearful and bewildering.   

Isn’t it true that the thing from which we cower will often make us rich; and that which we covet sometimes disappoints?  This transformation from fear to favour is something I have noticed now and then through the years; and have finally begun to comprehend.  Apprehensions prove unfounded, and possessions unrewarding.  In the taciturn, convoluted passage of life I see a Grand Design.  Many things have not gone the way I might have wished, and yet time and again I have stood back to marvel at the outcome.   St Paul put it this way:    “And we know that all things work together for good to them that love God, to them who are the called according to his purpose”.  I believe that implicitly; and yet I’ve often found it the core of my unbelief. 

The Little Blue Man makes a colourful tale, but it’s flawed.   For one thing it’s a singularly self-centred story.   As any adult must learn the fruitfulness of life is not concerned simply with me; it’s about us: my family, friends, community, church.   The ups and downs of my life are part of a far bigger picture and the “good” that St Paul speaks about is often seen only from a higher vantage point.  My story also lacks candour; after all I don’t regard my dependence on Bugger (et al) as the best thing in the world that could have happened.  But I do think that the human ability to know what’s best could well be the most overstated thing in the world. 

The Little Blue Man has one more lesson to teach.  He is ahead of me on the road; he’s waiting down the track.  I don’t know when I will find him next, but I’m pretty sure he will be there when I need him.  And that’s good news, because tomorrow I am catching a train!

Rejoice!

Spring 2010 #5

Joy of my life
You make me laugh more,
You make me smile,
You remind me,
You soften me.

We share one life, two views.
We stand together and apart.
Things I miss are plain to you,
The things I see you see more clearly still.

We shared a beach, quite unknowing, for who knows how many childish years.
Was it chance or the Divine Will that crossed our paths, years on and far away?

Your patience is a deep well.
Mother, carer, life to how many children?
Was it three?
No, five.
Now six!
All so different, so unique in themselves, all growing,
All doing so well in this world because of you.

There aren’t so many children round these days,
Who have a mermaid for a mum!

We are a good team, you and I.
We’ve seen a bit!
Our path has seldom been as straight as we had hoped;
But on every bend we’ve stood together, side by side.

What was that you said?
Sausage Hot Pot!
Let’s not.

These are good days;
Living, as we do, in Paradise.
These are hard days too, no doubt.
But I guess we two are somehow built for that;
And we believe!

Nine homes we’ve shared so far; too many I think!
But each has been an advent, a chapter in our book,
And each has had a richness of its own.
Each would have been a house, no more, save for your gifted touch.

We sailed the seven seas (minus six, and I think we flew).
Seven days, not seas! The longest we had spent kid-free in twenty years.
A birthday to remember.
50!
50?
Fifty!
Who would believe?
We climbed mountains, walked seashores, ate well, slept well, explored dungeons, stalked eels, we sat, we listened, we sailed a ship and paddled across the harbour, deep and green!

And this week we turn Twenty One!

Pearl of great
Price.

Paramour
Par excellence.

You are the butter to my bread,
The breath to my life!

The only girl I’ve ever kissed,
The only girl I’ve ever missed.

My Best Girl,
You are…

My Favourite Wife.

Spring 2010 #4

Of all the things I’ve lost, I miss my mind the most.

This week a letter arrived from the Neurologist who last month uttered the incongruous phrase, “It’s too soon to know”.  Coming on the tail end of a taxing (but exhilarating!) 30 hour sojourn his letter sucked my remaining breath away.  The previous day began with a pair of busses to the train station – then a train trip a couple of hours north – visit our favourite florist (where our daughter used to work) – meet another daughter’s orthodontist – coffee with our son – dinner with a friend – find the hospital in the dark with B4 – attend Sleep(less) Clinic – donate a bed time arterial blood sample (there are any number of less painful ways to shed a little blood) –  sleep(less) night – donate a wake up arterial blood sample (there are any number of less painful ways to wake up also) – listen to Dr Blood claiming he had already seen the video of my sleep(less) night on YouTube, then “I wish you well with your paranoia” as he waved good bye – some shopping in the morning – coffee with another friend – back to the florist to pick up a gift for my Favourite Wife – coffee with yet another daughter – train back south – collect FW’s birthday present – and a couple of busses home!  Phew.

The 31st hour, though, was the killer.  It was a fortunate thing that I was sitting down (on B4) when I opened the letter waiting on my desk.  This most recent specialist, like the neurology team that I wrote about four months ago in D-Day, believes this to be a “functional neurological disorder”.  Definition: Functional neurological symptoms are somatic symptoms that superficially resemble those of organic disorders of the nervous system but for which no physical explanation can be found *.  Bluntly put: psychosomatic, all in the mind.

It is no small thing to write about this, but honesty insists that I try.  I feel vulnerable and embarrassed.  Although local medicos quickly dismissed this theory several months ago, this second opinion forces me to look again; but what to do with what I see?  I might indignantly scoff at his view; after all, his conclusion is based partly on the fact that I can walk reasonably well backwards but hardly at all forwards (which, incidentally, I didn’t actually know until he alerted me to it. It has proved a very useful technique already in my shed!)  But outright denial could be self-deception, and of course it entails resignation to a serious physical condition.  Surely the possibility of treatment should be welcome news?  But if I embrace this new diagnosis I feel I am surrendering the last strength in which I felt secure: my mind.

I find the idea distressing in the extreme.  Unknowing is no longer a matter of not knowing what the specific problem is; now there may be no problem at all, at least not in the physical realm.  Could I really be that distorted in my thinking?  Could I honestly have sabotaged a career, thrown away our home, scattered my family, sent my Wife (the Favourite!) out to work, lost my licence, confined myself to a wheelchair, etc etc etc, all via some deeply subconscious trauma? Is it possible that something malevolent, something about which I know nothing whatsoever, something quite invisible even to the psychiatrists that I twice encountered, could actually wreak havoc beneath the conscious level of my being? It seems frankly demonic, and I wonder how one could ever be free of its clutches.

Without sounding too self-assured, I think I’m reasonably well adjusted. I guess it’s ultimately for others to say, but I don’t sense in myself a hidden neurosis, deep seated anxiety, depression, or any of the other stresses and distortions from which a functional disorder is thought to stem **.  I know little about medicine; neither am I a psychologist or qualified counsellor; but I have spent much of my career helping people deal with life’s great challenges. And so cautiously, respectfully, after taking several days to digest this news, I have decided that I disagree.  I think the good doctor – whom I must say I like – is wrong. 

I feel abandoned by the medical world.  Indeed one support organization (who, disturbingly, knew about this doctor’s opinion a week before I did) have already indicated that I am probably now ineligible for their assistance. Nonetheless, I will listen to every specialist, I will take the advice offered, I will not let a callous of pride or fear insulate me from what I may need to hear. If this two year journey turns out to be a bizarre sidetrack through a psychological wasteland … then so be it. But I don’t think so, I really don’t!

Thankfully, though, the many competing voices around me seem quiet, transient, even fickle in comparison to the voice within me.  (Ahhh, that’s tipped it, hasn’t it?  Now you know I’m crazy!)  There is absolutely nothing that can compare with a sense of peace, no matter what the circumstance.  Perhaps providentially it was my turn to preach in our local church on Sunday. Preceding my message was a video segment from a well known speaker who dramatically illustrated the predicament of being pressed between the sleepiness of men and the silence of God. This is Christ’s predicament in the Garden of Gethsemane when his companions abandon him and heaven speaks to him only of the cross.  There are seasons when we have neither the reassurance of men nor the explanation of the Almighty, and we must walk alone.  These are seasons of ultimate pressure, but they can be seasons of the most rewarding trust.

Rejoice!  

(& KBO!)

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* The Academy of Psychosomatic Medicine http://psy.psychiatryonline.org/cgi/content/full/48/3/230

** As a rather technical footnote, the following quote from the same source indicates the causative pressures that are thought to perpetuate functional disorder: “The identified potentially perpetuating factors were grouped into seven domains: 1) bereavement (significant bereavements that had occurred since the onset of symptoms); 2) health issues (generalized anxiety about health and symptom-focused anxiety [hypochondriasis], as well as continuing physical problems); 3) financial /social gain (referring to claims for compensation or financial benefits related to the target symptoms and illness-identity, with entrenched dependency); 4) affective disorder (depression and anxiety other than health anxiety); 5) sexual trauma (any sexual trauma, as defined above, occurring since symptom onset); 6) social pressures (including life pressures and caring responsibilities, where these were considered to be having a severe impact); continuing family dysfunction, and social isolation; and 7) other (any other situations causing distress, such as the illness of a close relative, financial problems, family estrangement, traumatic experiences after the onset of symptoms, or concerns about health of family members)”

Spring 2010 #3

The tropical surroundings of our Northern Territory building site were lush and verdant, and our activity attracted the interest of a fat, green frog. This guy was enormous.  He was stupendous, an amphibian of gargantuan proportion!  We were fitting out the kitchen, so we put him on a dinner plate (which he almost eclipsed!) with a little moat of water to cool his fat green hide.  He stayed with us throughout the day, and though no one actually saw him move around in his porcelain pond, no matter where in the kitchen we were working he was always facing directly toward us, staring us down with his beady black eyes.

I’ve recently discovered that B4* and I can perfectly mimic the fat frog’s technique.  I park myself bang in the middle of the kitchen, and wherever my Favourite Wife happens to be working, that’s where I point!  She seems as surprised and perplexed by my behaviour as we were by the frog’s; but where we found the fat green frog’s antics rather endearing, mine seem not to be.  Not if my Favourite Wife’s reaction to my watchful presence is any guide. “Get out of my kitchen!” she will finally erupt, usually after several polite suggestions that a wiser and more sensitive husband would have taken on board.

Which brings me to a most delicate topic: why is it that disabled people (people like me, for example) can be (very occasionally) so darned annoying?

Two or three years ago I watched as a woman asked for help once too often. She was a small woman, she walked with difficulty, and she was meeting a friend in a popular cafe. Her companion seemed a warm and generous person; and I must confess to having spied a little on their friendship. The small woman needed to access the washroom which was guarded by a heavily sprung door. If it had been possible for her to have asked for help in an easy, unaffected manner, if she could have asked her friend to open the door the way a workmate says “chuck us a screwdriver mate”, then all would have been well. But it was no more possible for her ask naturally for assistance than it was possible for her to open the door without it. There had been too many requests of too many people for too many years.  Perhaps there was only a hint of awkwardness or apology in her voice, but it was enough to nudge an unmistakable wedge of tension between them.  As I watched this scene play out I empathized with the helpful friend’s mild annoyance, and more keenly with the small woman’s despair.  I was an onlooker then, and I turned away from the scene with all its ordinary pain to attend to the simpler task of drinking my coffee; leaving them to their business which was none of mine.

Well, things change, don’t they?  I am no longer an onlooker to this drama; and perhaps I never was.

As I see it, the nearly insurmountable challenge is to retain a natural voice and a normal vocabulary even as the ‘normal’ world slips from reach.  I think this comes both from the frustration of personal incapacity, and from the knowledge that someone will be inconvenienced, if only slightly, by each and every request.

Hesitancy is another dilemma. My Favourite Wife, patient soul, might say, “Anything you need honey?” and I am paralysed with indecision. Is the trifling thing on my mind, like a cup of tea or something from another room, really worth her time?  What does the broiling sea of my emotions have to contribute to this minor decision? By the time I decide that yes, I do want something, she’s halfway up the hall again. “Honey”, I call out, “could you just……”  Now, that’s annoying!

My Dear asks me why I sound so surprised when she offers, for the 40th time in a day, to help me in some way. My tone of surprise is a merely a defence, of course.  A way of erasing the existence of the previous 39 assists, and a subtle denial of the fact that I need any help at all.  It carries the dangerous risk of offense: conveying the idea that I find her kindness somehow unexpected.  Now, that’s darned annoying!

It’s double jeopardy. Not only does disability distance you in many compounding ways from human interaction; but the interactions themselves – those moments that should be redemptive gifts of grace – can be laden with complexities that only widen the gap.  As another frog wisely noted, “It’s not easy being green”.

I’m not sure that this vortex can actually be escaped.  The command that we love one another has an obvious corollary: people need to be loved; and loving is no mean feat.   And so I am deeply grateful for the help my family and my friends offer, and I am more grateful still for the safe haven they provide in which I can learn a new language of love. 

My challenge: To look you in the eye, to speak to you as I always have, to trust you, to trust myself, and to be at peace with the truth that – like it or not – we are in this together. 

 

Rejoice!

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* That’s B4, the power chair with the fantastically tight turning circle!

Spring 2010 #2

There is on the platform of Mossvale Railway Station a heated and capacious waiting room, a welcome refuge against the biting cold night air which lingers on from winter, seemingly unaware of the recent arrival of spring. My fellow passengers hiding from tonight’s lurking chill are an engaging but vaguely eccentric Catholic priest, and a surly, unkempt man who seems intent on discussing the macabre details of a recent local murder. The former, a mild-mannered man, knows history and language; he must be widely read, he occasionally conducts the Latin mass in spite of his bishop, and comments that he would never offer his parishioners advice on contraception because, and I quote, “I know bugger all about that”. The latter actually has no ticket, and, perhaps thankfully, won’t be joining the train!  More than thirty years ago I once sought shelter in this very same room, when several friends and I rode push bikes many miles through torrential rain; arriving here at the end of some long escapade chilled to the bone. In those days there was an open fire burning, a fact which now seems as incredible, and just as romantic, as the weekend I have just spent. I can scarcely believe the joy that my family and I have shared together in the last few days!

It’s now 2am, and I am rattling through the pitch black NSW Highlands on a homeward bound train; on the last leg of an epic journey to see my young daughter married. Five days traveling; with some thirty hours spent on seven trains, four busses, three taxis; and with the most helpful young man and his box trailer late one night.

The role of marriage celebrant is without any doubt one of the real privileges of my life; and to have that responsibility in my own children’s lives is an extraordinary honour. Three of our six are now married, our son and two of our daughters, and I have had a part to play in each of the weddings. To lead your own through the rites of the marriage service, and to share in these great truths with family and friends, are joys that simply defy description.

The logistics of the week were certainly complex. B4 easily won the toss over good old Bugger, (the manual wheel chair) which immediately ruled out traveling by car with my Favourite Wife. I needed to make my own way to the city, and then to the rehearsal and wedding. I engaged in some serious over-thinking weeks prior to the event by pre-recording the entire ceremony in a fit of misplaced apprehension, just in case my voice wasn’t up to the task. A generous carer was engaged to help us get our special little girl to the event after a few nights in respite. Then there was threatening weather; a rehearsal conducted in a frozen gale on an exposed plateaux a couple of hundred feet above sea level.  And the emotional challenge of greeting friends, cousins, parents and in-laws from the seat of a power-chair reared its ugly head once again. But miraculously the day itself was beyond perfect! We survived our emotions, our nerves, and our complex dealings with one another as the tension built. The weather was stunning, the girls gorgeous, the men handsome … and we did it!

At 3.00am I am riding the train home with a sense of deep satisfaction; a calm delight in having played my part in life. This is a time of night that I occasionally dread, but this particular night is rich and I feel enormously fulfilled. To contribute means more to me than anything. My greatest fear is not losing any particular physical function, rather it would be losing the ability and opportunity of adding to the worlds of those that I know and love .

Eclipsing whatever value qualities such as perseverance or courage might have is the sheer tenacity of life itself. The gift of life is so resilient, so assertive, that given a glimpse of opportunity it must grow. More, it thrives!

Rejoice!