I am on Elizabeth St. Pier, in Hobart, Tasmania, at 3 o’clock on an ordinary Thursday afternoon.

Just above me on the pier is a hotel room in which my Favourite Wife and I stayed eight years ago, when we came here for her 50th birthday. Being here again makes my heart soar with gratitude, with satisfaction, with joy. I feel victorious; a rugged, physical, robust sense of triumph that is, perhaps, slightly at odds with circumstance.

Our first trip here, in 2008, was an elaborately concocted surprise that began with a large picture of the Somerset Hotel in the Saturday travel lift-out of a Sydney Morning Herald. The idea of a hotel on a pier on the southern edge of Tasmania, the place of famous Antarctic expedition departures, imediatley caught my imagination.

My daughters, then in high school, quickly collaborated with me to plan a surprise birthday that would end after a week’s holiday with a still bigger surprise. The birthday party was a truly great success, due to the creative talents of my girls, and it was that rarest of all surprise parties: an actual, complete surprise right to the very last second. Driving into the carpark of a favourite cafe a little way out of town Favourite Wife was just a little perturbed, telling me we would never get a table with so many cars there! But the surprise to follow the first surprise was better yet.  After the party we went away for a few days to our favourite beach (Balmoral beach, on Sydney Harbour, where we both played as children, but being boys and girls we naturally stayed at opposite ends of the beach). We had with us carefully forged air tickets for our homeward flight on  Wednesday morning. On Tuesday evening we were in the Art Gallery of NSW, waiting for a lecture which was to be followed by a meal with live music in the cafeteria below, and I gave my Favourite Wife the actual air tickets, with the destination Hobart, Tasmania; rather than Wagga Wagga NSW.  Quite a difference, and for more than half an hour she was quiet; in fact utterly silent. I was on shaky ground not knowing if it was the silence of delight, or of disbelief, or of ….. well, you know that other silence……

A fortnight ago, when Hobart’s weather first appeared on the iPad, today was pegged as a single rainy day surrounded by pleasant, sunny days. We kept our fretful eyes glued to the Hobart forecast every morning thereafter, without much encouragement, but in the event it has been the opposite: a spectacular blue day with cool, clear air and warm sunshine. Perfect weather for a day exploring the history of Hobart, and for retracing our 2008 steps along the waterfront to Salamanca. Our ship leaves in a couple of hours, and I have only a few more minutes on this pier to savour our astonishing conquest. Favourite Wife has gone aboard already, warning me of the sternest reprisals imaginable, should I fail to board before the ship leaves.

Arriving in Hobart in 2008 we hired a car and drove to the snowy top of Mt. Wellington, then made our way along the waterfront into the city, and then turned left at Elizabeth Street, right onto the pier. Another surprise! Waiting in our hotel room was a large bowl full of 50th Birthday postcards which I had been posting to the hotel for several weeks from Central Australia and from small towns in several states as I had journeyed out and back. I think there were forty odd. So many surprises, what a blissful  week we spent together.

On that first evening in Hobart we ate fish and chips and drank wine right here on the pier, so as soon as we were permitted to disembark last night we headed for this same spot. Once again we bought fish and chips (what beautiful fish you eat in Hobart!), remembered the past and toasted the future. Beside us was a tall ship – a smallish tall ship – on which we had sailed up the Derwent river for the princely sum of $15.00. The price has doubled since, but the Lady Nelson looks exactly as we left her.

That moment last night, side by side on a bench on the pier, eight years later, was the stuff of dreams.

With all that has come into our life since 2008, the very idea that we could repeat our great journey would have seemed a faint hope, even a false hope, had we thought to look this far forward; and yet here we are. I recall that on the following morning on our previous visit I awoke with the physical sense that something was wrong, as I had on numerous mornings around that time. Within a few weeks I would begin to struggle with my work at our church, and within six months of that morning in Hobart we had lost our employment and our home after a diagnosis of Motor Neurone Disease. This day, eight years on, might not have been; indeed I myself might not have been by now, but I am, and we are, and it is!

Rejoice,
indeed Rejoice!

 

Drop me a line!

One doesn’t expect problems; at least not problems beyond remedy.

I am writing eight km east of Tasmania’s rugged wild east coast.
East of east!
Wind is whistling through the nooks and crannies of the ship’s steel superstructure. I am on the deck outside our stateroom under a ragged grey sky that perfectly suits the wild, rocky coast, the thickly timbered hills and lines of blue green mountains hiding way to the west.

But I’m tied down. On a short leash.

While my Favourite Wife has traversed all decks, familiarised herself with the ship’s (to me) incomprehensible deck plan, and explored in detail all the shops and several of the dining and entertainment areas onboard, I have been right here, shackled to a powerpoint; reading and writing “far from the madding crowd”. While I like this sort of day very much in theory, especially staying away from shops, being physically tethered to a powerpoint is tedious indeed. And it is intimidating. I am amazed how such a change can dampen my resolve, growing tendrils of doubt around my robust hope for today, and tomorrow, tomorrow’s morrow (did Shakespeare say that?….) when we plan to go on shore in beautiful Hobart.

The problem:
Long before paying for our tickets to Tasmania on the Golden Princess I had researched the possible hazards of voyaging with a wheelchair and ventilator; consulting with our GP, the travel agent, the Princess Line, and reading accounts of other travellers.  We booked, we waited months, then weeks, then days, then hours …. and came onboard yesterday. All seemed well, overwhelmingly well, superb even! The ship left Melbourne in the late afternoon and we were setting up our room before heading out to explore a couple of the ship’s 15 decks when I discovered that none of the three chargers for my ventilator batteries would respond to the ship’s voltage. This was a fright like no other I have ever had. People talk of experiencing a vehicle collision in slow motion, and it was something like that: in a blink of time I calmly saw the degree of the problem, the possible consequences, the immediate implications for our holiday, a range of possible paths through the dilemma, and resolved that none looked too promising.

When the new wheelchair arrived four months ago the imperative  task was to design and build a new housing for the breathing ventilator, power supplies and batteries. This box now sits compactly under the seat rather than hanging behind as it did previously, greatly enhancing the chair’s centre of gravity. Inside are three batteries, three battery chargers of two different types, and capacity to run 12, 18 and 240 volt supplies. The essential first and last job of every single day is checking batteries. I endeavoured to make this set up foolproof and able to cope with any emergency. There is even a second complete ventilator under the seat, along with various spare parts and a tool kit with a small gas soldering iron. But none of my careful designing addresses running for six days without a battery charge. Fortunately the ventilator itself is perfectly happy with the ship’s power, but how can I make four batteries, 17.5 Amp Hours of stored power, enough for one and half days at home, last six days? And still have enough battery power to travel home from Melbourne by train?

The only answer is to find a 240V powerpoint on day three at the dock in Hobart, and spend most of the voyage right here, fettered to the powerpoint in our stateroom. Fettered, that’s a good convict word, especially as we head for Port Arthur. This isn’t how we had imagined our maiden voyage, and we both find it more than difficult to accept.

Yesterday evening I decided to use some of the remaining ration of battery power to look for a solution. I visited the customer service desk, sought out our room steward, and asked other crew we met. Early this morning I went 6 floors below to the medical centre. No one, understandably enough, could see through this technical issue. I asked if I could meet a technical officer, and instead was directed to the “executive housekeeper” for our deck.  I learned from her that the ship has eight electricians, (eight, imagine!). The electrician responsible for stateroom issues is not available until later today, but an appointment has been made.

Happily my powerpoint manacle, made with two extension leads, is just long enough to reach our private balcony, which is a delightful spot. It’s about mid afternoon now, and we have just sailed slowly past this:

Four stark, granite mountains plunging sheer into the deep channel that approaches Wine Glass Bay. Known as The Hazards, they were a danger to be skirted by sailors who used the bay as a whaling station a century ago. The Hazards are a stark witness to my tethered soul searching, as my adventurous spirit gives way to fear, and I wonder if I am simply foolish. I can’t shake of the possibility that the ventilator, as well as the battery chargers, might have failed to work on the ship’s current. How irresponsible have I been; and have I exposed my family to absurd risk by heading to sea? It’s odd, the way our thoughts and emotions can swing, tethered in their own way to the momentary experience of life. What is the appropriate balance of adventure, hope, responsibility and caution? Am I reckless beyond belief to be running the ventilator – vital medical life support – on cordless drill batteries and a bundle of switches purchased on eBay? As the Hazards drift slowly out of view these anxieties, hazards of the soul, seem to me as critical as the problem itself.

Postscript.

Later that afternoon the electrician arrived, looked over all my gear, and showed me that most of my equipment, the ventilator itself and the SmartDrive transformer,  was happily running on the ship’s 110V system. But the Ryobi battery chargers were all rated at a minimum 220V. He said the ship had a second, 220 volt system; and there would be an outlet here in our room, although it took even him some little time to locate the point hidden behind a bed. He returned a while later with an adaptor marked MUST BE RETURNED TO ELECTRICAL WORKSHOP, and all was well. The batteries began to charge, winking their reassuring green lights in place of alarming red. Almost twenty four hours after discovering the problem, with 40% of the battery storage already spent, the relief was extreme. Life returned in a heady rush of exhilaration.

The Hazards of the Soul, though each needing to be addressed, were no match for the call to explore the ship and begin our long anticipated adventure together.

 

Rejoice!

 

 

Drop me a line!

The difference between the Old Bugger and the New Bugger is enormous. Truly vast.  So unalike are they that clichés fail completely. By comparison chalk and cheese taste much the same, birds and bats are indistinguishable, night and day … synonymous. After six years I had no idea that a wheelchair could be this good.

“Bugger”

An apology, first up, for all the bad language flying around in this post. For the uninitiated, Bugger is the unintended name of my wheelchair, which stuck firmly after I posted its picture on FaceBook. The single word caption was my timid way of announcing a great challenge to the world.  Family and then friends quickly latched onto the name, and I must admit I still find the wry humour most attractive.

 

I wonder if I can give the ordinary populace – those at the disadvantage of not having wheels – any sense of the difference between a heavy old collapsible wheelchair and a top of the line, rigid-frame chair. Have you ever dreamt that you could fly, soaring over valleys and oceans, only to wake in the morning to discover the sobering reality of unyielding gravity? Well, New Bugger is as close to flying as I can imagine, and every morning it’s a dream come true. I reckon this chair is all of five times easier to push; the thing goes like a bullet!

Old B has been with me since Christmas 2009. (A gift Unwelcome). It was a second hand chair which I rented, then went on to buy because it was unusually narrow and long – well suited to my height. Old B has been a great companion, and we’ve done some remarkable things together. In 2010 we spent a month in the Gibson Desert, we’ve been to Queensland twice, and to Sydney and Melbourne a dozen times each.  She’s had six new wheels: two on the back, four on the front; and numerous modifications in my workshop. A bog standard folding chair, sturdily made of aluminium tube and lots of steel, all in gloss black.

New B has been with me since mid July. Made of Titanium tube with alloy parts, the new chair was custom built to a drawing that took weeks to develop with GMS in Melbourne and the TiLite factory in America. Every dimension is individually set for the user’s physique and TiLite describe their chairs as a “custom made prosthetic”. To get such a result costs no small sum: $grrcoughcough in fact. The SmartDrive wheel on the back was almost as much at $sneezesniff; a grand total of $aweekinbed.

Here is a fact that all wheelchair initiates should be told:

Collapsible wheelchairs are designed for carers;
Rigid frame chairs are designed for users.

I didn’t know that until I began ordering my rigid frame chair.  It’s an oversimplification, but essentially true. Collapsible chairs are designed so a carer can fold them up a stick them in the boot of a car. Handy for the carer, but the disadvantage is that part of the energy expended by the user goes into all those folding joints and pins, and never reaches the ground. Pushing a rigid chair is a totally different experience, the focus of energy into motion is brilliant, and the chair is also beautifully silent. I’m a stealth machine going up our hall, I regularly startle the household!

A rigid frame is especially valuable for my purpose; and here it gets a bit technical. A rigid frame has lots of empty space under the seat which is occupied in a folding chair by the folding mechanism. This under-seat space is where I have put the breathing apparatus and batteries on New B, rather than hanging behind the seat as it was on Old B.  Why this matters so much is that it moves the centre of gravity forward, which in turn means the push wheels can be moved forward. This is everything! As the wheels move forward, even in small increments, pushing becomes easier. On Old B much of the effort had to be applied while my hands were level with or behind my shoulders. On New B the point of power delivery is in front of my shoulders, and so you lean into the work and it is far more efficient. Also, as the axle moves forward the turning point of the chair moves forward until it is ideally right beneath you so that you can spin around “on the spot”.  Old B didn’t do this either and so every small or large turn took considerably more effort as the longer wheel-base of the chair had to be brought around.

Access to change the batteries and operate switches is through the
wide gaps between the ‘PBO’ wheel spokes. (Each spoke contains over 30,000 strands of Polyphenylene Bensobisoxazole fiber, delivering 3 times the strength of stainless steel at half the weight). Beside which they look very cool indeed.

The one small downside of moving the wheels forward is that the chair becomes “tippy”, inclined to tip backwards, as I discovered to my discomfort while going backwards down the ramp out of our vehicle. Notwithstanding anti tip bars New B tipped so effectively that the chair sailed right over me and ended up on its wheels again in the car park, suffering a tiny scratch. The chair, not me, I didn’t get a scratch at all but my Favourite Wife told me I looked like a tortoise, which might be worse…

 

Rejoice!

 

 

Please note: the web address of Rejoice! has changed. Please visit      www.rejoice.live

As always, I’d love to hear from you.

 

 

 

Having one physical problem is a challenge, but what must be avoided, at all cost, is having two. The specific comorbidity I fear most is dandruff; which I will attempt to explain…

When I first heard the word comorbidity I was attending one of those joyful hospital admission interviews. If I recall correctly it was quite late in the evening and a young and overworked resident was working through volumes of paper and a hundred questions.  Momentarily she slipped into medico jargon and out popped this arresting new term, comorbidity. My flash of instant insight was that it must mean dying of two things at once, which sounded like a tough gig.  Do you have a comorbidity? I did not know how to answer, there being no small uncertainty right then that I might be dying of one thing; let alone two!

Merriam Webster sheds some light:
Comorbid – existing simultaneously with and usually independently of another medical condition.

That was at least five years ago, and in the interim I have discovered that I can actually cope quite well with a couple of things going wrong at once; indeed most grownups are dealing with a stew of big and small dramas all the time. The great challenge, however, is not how I deal with two problems at once, but how everyone else deals with my two problems.

Which is where dandruff comes in. Picture the scene: you meet someone, let’s say it’s me – just for fun.  I have a wheelchair, but so what? No problem, right?  You offer me your hand to shake; you are eager to greet and maybe even meet a new friend.  But at that very moment, your hand mid way across the void, your eyes fixed on mine, your sharp peripheral vision kicks in, the ocular function at the animal core of survival, and a subliminal alarm registers deep in your brain’s occipital lobe. DANDRUFF!  Your gaze instantly narrows, your outstretched hand slows fractionally in space, you falter, tense nanoseconds pass as your gaze darts hither and thither seeking the confirmation you inwardly dread: Comorbidity!

My God! This person, who came so close to entering your sphere of existence, is a leper! It doesn’t stop with the unsightly dandruff dusting his jacket either; involuntarily you catalogue with stunning rapidity the range of defects he possess. The wheelchair, yes, but now you see the small, faint food stain on his shirt cuff; you notice a patch of unsightly lint balling slightly on his jacket; there’s that odd breathing mask; his glasses are grossly out of fashion; and, come think of it, there’s something unsettling, disturbing even, in his smile. But you are committed now, and the handshake must go ahead. You hope to goodness that he doesn’t notice you frantically scanning the room for hand sanitiser.

So, I have become a scrupulous consumer of anti-dandruff shampoo (the strong stuff with the boring label). Am I a complete nut job, or do all of us have dreadful thoughts like this at times?  Do we share this readiness to judge, to categorise, to confirm our prejudice; do we all have that constant urge to peg everybody against our own superior normality?

Antidandruff shampoo is part of an elaborate defence shield that I have recently recognised around my public persona. I watch myself being vigilant to present as somebody in tip top physical and mental condition; a veritable specimen of wellbeing. I expect I do this because I have experienced the opposite: occasionally I have been written off, judged incompetent, and it’s no fun at all. So I scrub my scalp, I look people confidently in the eye, my wardrobe drifts towards primary colours, I’ve grown a very trendy beard (so I tell myself), and my glasses are sharp!

 

Normal is a supremely hard act to sustain, but we try, don’t we?

 

Rejoice!

 

 

Please note: the web address of Rejoice! has changed. Please visit      www.rejoice.live

As always, I’d love to hear from you.