Against all odds, I’ve got a job.

I have applied for work six times in the last few years, and been knocked back five. This is a little galling, as they were all volunteer jobs. Being rejected once as a volunteer is discouraging, twice perplexing, thrice infuriating, the fourth time mystifying, the fifth – well I pretty well talked myself out of the fifth job in a conversation with my potential boss, perhaps avoiding the pain I could feel coming my way. But perseverance prevails, and I have a job! Not a glamorous job, but I like it. Are you ready?…

My job, for two or three hours each Friday, is to shelve returned books at our local library. I was in the library late last year and watched a librarian at work putting books back in their proper spots on the shelves and thought, ‘I could do that!’. I interrupted the librarian from her task, and asked if there was a role for a volunteer. Thankfully she was not intimidated by all my apparatus, the ‘rolling show’, as others had been. I applied through the local council’s volunteer department, organised a Police Check, and, having admitted to my several shortcomings in the application form, wrote a letter explaining how I could do the job. I detailed my long acquaintance with the Dewey Decimal system; the easy access I have on Public Transport; the quietness of my Smart Drive wheelchair motor that would not wake sleeping patrons; the portability of my ventilator; and the gorilla-like length of my arms with which I can easily reach the top shelf without standing up. (I didn’t really say that bit). I rather think that my long record of volunteer-rejection fuelled my letter!

But, there was no reply. November, December, Christmas, New Year, January, home from holidays … still nothing.

January has been my prime month for applying for jobs for the last few years. This annual phenomenon is a clear response to our January holiday. Each year I come home so energised by being away that I am compelled to look for a new project. One January I saw a Lawn Bowls Wheelchair on eBay, and impulsively put in a bid. I was sure this was the Big One, the bright path to nirvana. While I waited for the auction to close I went to the Bowling Club and met some of the experts in white. Mercifully as the gloss began to fade from this vision splendid somebody else put in a higher bid, and so I was saved from a life of drinking beer, in white.

It must have been January buoyancy that eventually gave me courage for a follow up email to the volunteer department. But nothing followed, not even a courteous reply: “Thank you Mr Allen, but…   ah…   well…   no thanks”.

February eased past, then March, and the call came! “Mr Allen, we’d love you to come down.” It’s a great job, my job. The Library is a hive of activity, and there are numerous keen and interesting staff. My gorilla arms are superlative. The only downside to my job is that it reminds me of the job I really wanted. Three of my six applications were for the same job, in three separate years. I wanted, more than anything, to be a hospital chaplain. I had been a chaplain for a couple of years in another town and it was one of the most fulfilling roles I have ever filled. The most fascinating aspect of chaplaincy was a seat on the hospital’s Medical Ethics Advisory Board, a panel of lawyers, doctors, administrators, a university lecturer in ethics, and community representatives that provided the Director of Clinical Governance with advice on thorny problems. We discussed how much it was appropriate to spend on specific, anonymous patients in the light of other needs and budgetary constraints; and once considered the therapeutic use of Thalidomide in our hospital. But the wonderful part of chaplaincy was listening to people talk through difficult times in their lives, acknowledging all they felt, and sometimes having something to offer that lifted their gaze. It was a beautiful job, and sometimes a sad one. As well as services in the Chapel, there were occasional funerals to conduct; once of a much admired member of staff in her thirties who had suddenly fallen down on duty, an aneurysm that ended her life within a month. She lost her speech, but her life seemed transformed by a visit from a retired Bishop who gave her a handmade wooden cross that she rarely let go. The most difficult task I have ever faced was to help a family turn off life support for their father in the very early hours of a winter morning; it was my role to nod to a doctor while I led the family in prayer.

All of that happened in the life I used to live as a fit and healthy, ordinary pastor in a country town. Our world changed completely in 2009 after a Motor Neurone Disease diagnosis, and after some time I felt I had something to offer as a hospital visitor; I now understood deeply the fears and hopes that I had heard so many patients express; and I dearly wanted to sit beside beds again, and listen.  But three years in a row the hospital said no. The first time because I was too late for the volunteer induction course that they only ran once a year (the course I regularly helped present in the previous hospital!); and the subsequent two years because my wheelchair was considered a hazard in the wards. I must admit, I still feel angry about it, sorrowful; it seems to me an entirely unfair and futile decision. Without pride, I still feel I would have been good in that role, and it is painful revisiting it now.

But, I’ve got a job. At last! The need to contribute something, somewhere, is strong. I am very mindful of the privilege of living in a country with a disability pension, much though I hate being a pensioner. And there are all sorts of other ways the community offers generous support. Putting a few books away hardly repays that debt; but it’s something. It’s odd really, how much pleasure there is in doing something. I delight in catching the ‘bus to work’; and the satisfaction of coming home again properly worn out by a couple of trolleys of shelving is no less than the happy exhaustion I once felt after a big day digging fence posts on the farm, or pouring concrete when I was a tradesman.

I’ve got a job!

Rejoice!

 

 

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

As always, I’d love to hear from you.

 

 

 

This is the story of The Pool,
sequel to last week’s Oh, Oh, Oboe.

Late in winter of 2014 I made my first Land Voyage to Maroochydoore, to visit my daughter’s family, and returned home to a wonderful project we had dreamed up: building a proper Cubby House our grandchildren could play in whenever they visited. It would be tall enough for grandparents, and big enough to roll out a double swag. This was a thrilling prospect: I do love a project! I remember the keen anticipation I felt on the train heading south from Queensland as I rehearsed each step of the plan.

We have a very good handyman who we call in for the big jobs now and then, and he came and dug footings and poured concrete for six treated pine poles, on top of which he placed a large timber platform that I had screwed together on the garage floor.
Then I had help from a couple of good mates who stood up the various panels of a sturdy, treated pine cubby made for us by a local man – who also happens to have a child at our school. All I had to do then was drill in a fair number of screws, hang a door, roof the veranda, brace the frame, a bit of this and that, and the job was done.  Marvellous!

A few weeks after that highly successful project I was travelling on the bus to town and had a flash of transformative vision. I suddenly saw how we could use the very same process to build the swimming pool that my Favourite Wife had been longing for ever since we arrived in Paradise.  In three of our former homes we had built our own pool, generally an above ground pool that we sunk well into the earth and abutted with generous decking. But this home was on sloping ground; I was not even vaguely capable of the physical work I had previously undertaken; and the cost of a professionally installed pool was going to be monstrous. In my momentary vision I saw that all we needed was another set of treated poles supporting another platform. This one would be more like an oversized tank stand, with deep beams and joists, decking which would be properly fenced around, all supporting a modest ten foot circular pool.

I had a few minutes spare that day, and went straight from the bus stop to the council building across the road, where I drew a sketch of my vision for a building inspector. He had no objections, as long as I submitted a proposal with proper drawings and specifications for formal approval. From the council I went directly to the bank, and they we happy to join in too! It was seven weeks before Christmas.

Within three weeks I had researched the spans and timber sizes to support 6 tonnes of water (that number was a surprise!), submitted drawings, obtained required consent from one neighbour, gained formal approval from the council and from the bank, ordered a big sling of treated timber and a ten foot swimming pool, and developed a severe case of the dithers on the way. Should I do this? Could I actually do this? It seemed, more often than not, preposterous. Was this the most fantastic venture which the family would revel in for years to come, or was it blind stupidity that would begin and never end, send us broke, and ruin our best bit of garden with a half-built timber “thing”? Quite literally I was sleepless with self doubt through many nights. But one month before Christmas we began!

We set out our site with string lines and our handyman came back with an offside and a laser level, and nine stout posts were set 600mm deep in concrete. My good mate from the cubby-standing day came back, and together we lifted up the 12 inch deep treated timber bearers that I had cut and notched, ready to carry the joists. One of my daughters was at my side every weekend, and whenever she could after work. She would pass me things, lift things, hold things, run and get things; she was brilliant. Much of the time I could stand in one spot and get a good deal done, sit for a moment, then stand in another spot. The big old Power Chair “B4” was called back into service to travel from the house to the building site, all of 30 feet, where I had several pairs of crutches scattered about. I brought the breathing ventilator on site with linked up air hoses to extend my personal ‘battery life’. Day by day the pool deck grew and grew and grew, and finally at 12 noon on Christmas Eve the council inspector came. It was his last appointment on the very last working day for the year, and having measured all the critical lengths he pronounced our pool complete and fit for use.

On Christmas Day, 2014, we swam!

Now we swim in the pool every day when the mercury climbs. Favourite Wife is a happy wife, Teen Girl has always been a mermaid, and our small grandchildren feel quite at home in our 3 foot deep, wet and cool wonder.

That’s the story of our Pool, and more than a year later it still takes my breath away: I did that!  I can’t believe it sometimes. And – get this – having done that, there was nothing I could not do! Nothing in all the world!
Crikey, I could even learn to play the oboe.

The Pool: a winner.
The Oboe: not so much, but no regrets whatever.

 

Rejoice!

 

 

I don’t love the comments section found under blogs and on facebook and twitter and practically everything on the web. While it is called ‘the conversation’, to me it doesn’t seem like a conversation whatsoever. But I do enjoy hearing from those who are so kind as to read my writing.

 

On Friday I took only five wheels to town, rather than the usual eight.

This began with the longest downhill, freewheeling roll I have ever made: from our front door to the bus stop. Only about 300 metres, and not overly steep, but braking is only possible with gloved hands on the wheelchair push rims. What a thrill!

Having safely arrived at the bus stop I felt deliciously irresponsible. Dropping from eight wheels to five meant no Chug, no tool kit, no backup power supply, no spare ventilator, no spare mask, spare air hose or spare everything else that I habitually take everywhere. No plan B! The feeling was both intoxicating and intimidating; a feeling so intense that it took the whole ten minutes waiting for the bus to figure out quite what it was all about. Travelling so light is really quite exciting; thrilling in an almost childish way. After two years of only leaving home with loads of equipment, my “rolling show”, this new sense of heavily pared back mobility is quite hard to describe. The closest analogy I can think of is that it felt like flying! But the big, consuming question occupying my thoughts at the bus stop was simply this: will it work, will this go well, is there an uncomplicated, happy ending to this bus trip? I find the element of risk very invigorating; and in my little world, this definitely felt risky.

As the bus appeared at the bottom corner of the park, so did an increase of apprehension and thrill: how would the next stage go? Would my five wheels make it smoothly from the footpath, up the ramp, around and down the aisle of the bus? Or would it get all confusing with driver and even passengers getting involved in one of those awkward public rescues. (It’s quite possible that you have never been ‘publicly rescued’ – it’s not much fun.)

There was no turning back: I knew that my five wheels were not able to tackle the hill-climb back to Paradise.

Here comes the bus!

            The doors are open…

                        The ramp is down…

Steady, concentrate, eyes on the ramp, and push!

The mystery fifth wheel is a SmartDrive, a fantastic, lithium battery powered device that I ordered a fortnight ago after trialling several power-assist manual wheelchair systems in Melbourne. It really is stunning technology, (stunningly priced), fairly new on the market, and another example of the huge improvements of the last few years that I benefit from every day. With a range of 15km on flat ground, this little wheel pushes harder and faster than you can believe.  It has amazing traction, and exactly copies the speed you set with the chair’s push rims. Steering and braking is also through the push rims, just like normal. A blue tooth connected wrist band with an accelerometer notices when you make a pushing motion and engages the motor immediately, and disengages as soon as you tap your hand on the rim, sending a vibration to the wrist band. It is brilliant inside shops, between shops, round the house, round the block, on grass, on carpet, everywhere. And it’s great fun too; far more engaging and satisfying than a regular power wheelchair. Particularly important is that it is physically demanding enough to avoid the trap of inactivity that I once fell into by relying too much on a power chair.

Play the video on the SmartDrive site: http://www.max-mobility.com/

One more story: A highlight in researching and ordering this device was an appointment with a mobility provider in Melbourne who was also a wheelchair user. The difference between this and previous sessions I have had with occupational therapists and sales people was immense, massive. Firstly, he was sitting in his wheelchair, down at my height.  I cannot remember a therapist or salesperson in a showroom who didn’t remain on their feet, creating an obvious but strangely unaddressed awkwardness. Now that I think about it, I can’t understand why either party allows this to happen, it’s awful. Beyond that, this chap just got it. Everything I tried to express he immediately understood, every problem he knew first hand; and every suggestion he made came from long personal experience.  He told me simple things about my current wheelchair that no other professional had ever suggested: the push wheels needed to be moved forward a couple of inches, the rake on the seat wasn’t quite right. (Since corrected in my garage, and so much better!) I feel exasperated when I think of all the people in the industry I have met over the last five years who must have known that, but didn’t stop to tell me! I spent about three hours there and learned more than I had in all my previous appointments combined. It’s a reminder that there is no substitute for shared experience; we should all roll a mile on another man’s wheels now and then.

About all this I am feeling very pleased, very blessed, very rich!

 

Rejoice!

 

 

My recent journey retracing last year’s 1580km expedition north by rail to visit my daughter’s family is well and truly complete, but I have a final reflection to share. It’s a sequel to the thoughts in last week’s post I think.

Passing through Sydney twice, it was inevitable that at some point I would end up on a crowded bus. This is can be nerve racking. Most bus drivers have proved to be helpful and kind, but I have met one or two that are tense, cautious … even gruff. At one bus stop on this trip the driver looked at me with something like disbelief and said,

“You want to bring that”   (pointing dramatically at The Chug),
“in here?”                         (pointing sceptically at his bus).

Honestly, I don’t blame drivers for their caution. With all my paraphernalia, my “rolling show”, I’m sure I look unlike any other passenger they have seen. And there is another factor: more than half the people I see in wheelchairs on buses also have carers with them. In fact I have never yet seen another person with a manual chair on a bus without a carer, and many have significant, obvious disabilities. So it’s probably quite reasonable for drivers to have legitimate questions about my level of physical and intellectual ability, my communication, or anything at all really.

The Chug is the same width as Bugger, a narrow manual chair, so that side by side they will fit snugly into the smallest two-seat wheelchair space on any bus. Living in the country I have had much practice driving up the ramp and turning into fairly empty buses, uncoupling from The Chug and parking both units neatly and quickly. I generally have myself organised before the driver gets back to the wheel after he lifts the ramp. I can do it quite efficiently now, but the first dozen times were quite daunting, and the second dozen still intimidating. A crowded bus still brings considerable apprehension.

The dread moment arrived in Sydney surely enough: a full looking bus was pulling up, and time pressures did not permit me to wait for another.  The driver was happy and courteous, but even so the multiple challenges of driving onto the bus, putting a ticket through the little machine, squeezing past who or goodness knows what, and finally parking both units, were all waiting ahead. I could hear the driver asking people to move out of the designated spaces behind the front wheel arches, and I heard a couple of the seats being folded up.  It’s amazing how much your brain can process in one moment, and along with fierce concentration on the practical details at hand my thoughts delved into the possible reactions of the people on the bus.  Especially the ones who had been asked to move!  Were they annoyed with me? Would they be looking at their watches wondering if the slight delay would escalate into missed connections in peak hour transit? Were some people questioning my right to take up 4 seats when many were already standing? Were people tut-tutting under their breath, asking themselves (and possibly their bus-neighbours) the very same questions about my level of ability that bus drivers must ponder?

Sydney buses have a peculiar stipulation that I have encountered nowhere else: wheelchairs must be parked backwards (hence the need for 4 spaces on this bus, double the disruption I generally cause in Victoria). There is a bulkhead that you must back up to, which would presumably serve well in the case of a collision. But the result was that as all these anxious thoughts were still whirling around I found myself looking straight into the faces of my imagined antagonists.  Several were barely an arm’s length away! What’s worse, the seating on buses steps up as you progress down the aisle, presumably to accommodate mechanical things going on under the floor. From the perspective of the backwards-facing-wheelchair-spot this creates a veritable amphitheatre of interrogators!

There was nowhere to look except into eyes and faces, most wearing the blank, dispassionate look of the city dweller. They were everywhere! As I was imagining the unspoken ire of the audience I faced, one of the blank faces broadened into a smile.

“Nice driving”, said the smile.

“Good job” came a second.

“You must have practised that”.

And suddenly there were several smiles and nods, and a couple more kind remarks too. Briefly, we were connected.

My mission to spend a couple of days with distant family was quite unknown to my new found friends. They were unaware that it would take 9 days of travelling on public transport to accomplish my goal; they had no idea of the complexity of preparing for the trip with a check-list with over 100 headings; nor had they any sense of the climactic, blissful celebration of life which my grandsons and I enjoyed at the other end. Similarly, I was utterly unaware of the private challenges each of my (smiling!) audience no doubt carried.  And yet …

There was a connection. We were all on the same bus, just for a moment sharing a common destination, forging our way along life’s uncertain path. I don’t think I am reading too much into that moment; I think the warmth I suddenly felt in the face of fear came from a tiny glimpse of human truth, shared by a few, on an ordinary bus: that we are all in this together. One of us might have had a more obvious challenge right then, but the rest well knew that we’ve all got to take our chances, have a go, and hope.

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Rejoice!

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(musings while the batteries charge)

They thought I wouldn’t notice their little power point hidden 12 feet off the ground, but I did!

I’ve been on the road, or road & rail, for about 18 hours since leaving an apartment in Sydney, which is enough time to have drained some batteries.  Being a month later than last year the weather is warmer, and I no longer need to worry about heated breathing air.  My stock of Ryobi batteries will give me another 10 hours of breath, but the Chug* is running out of puff.  There is still another train to catch, a bus, and then about a mile to cover under my own power before I arrive at the same Yurt in Maroochydore were my daughter’s family and I stayed in last year.  At 5:00 this morning I could find only one power point on my careful inspection of Roma Street Station, and it didn’t work, so I had to decide: would I use the remaining power in my batteries to keep searching for power further afield? Or would I play safe and sit still, hoping that the meagre remaining battery power would be enough to make it all the way.

There really is no question, is there? ‘Safe’ is an attractive enough word at the end of an adventure, but not at the beginning! I had been hoping to have time for a roll through Roma St Parklands (the world’s largest subtropical garden in a city centre apparently), which is found beyond the far end of Roma Street Station.  So I went!

The parkland paths are winding and some are steep, and as I progressed the battery level lights were blinking out one by one – with no power points in site. This early in the day there are no coffee shops open – a power source I’ve often used – and as the garden shadows retreated in the dawn, the shadow of concern lengthened. I prayed that quick silent prayer that has a universal appeal: God, help! And for some reason I turned back on a path I was exploring and there it was, a power point!

Hiding up there in the darkened, early morning eaves of a shelter. It was certainly high on the wall, but reachable if you make very sure the wheels are locked properly……..

(A ranger just wandered by, I think he knows what’s going on, but he didn’t say anything)    

A learned Reverend friend and I were discussing, just a few days ago, why it is that the more incidental the prayer – one might even say the more trivial the prayer – the more likely it is to be answered. A paradoxical thought, but one that people of different faiths or none will recognise from experience. The closest I can come to an answer is that it is an invitation to greater faith.

While the charging is in progress I can’t move far from the chug, especially as the paths are quite steep in this hillside park. But perched on a sort of viewing platform I can see a great deal through a pair of binoculars. So far I have seen several iguanas, a frilled neck lizard running along on his back legs, numerous smaller lizards, scrub turkeys and a large native rat, waterlogged, kink-tailed and much the worse for wear. Good binoculars are the ultimate wheelchair accessory, and must be permanently attached.  You may not be able to get there, but you will still see it all in great detail.

(3, 4 ….. 5 uniformed groundsmen! And a more senior one in a different skin driving a little electric vehicle. My secret charging station is swarming with authority, it must be the Hive!  I’ve noticed that since the whole world began charging phones and whatnot that public power points have mostly been removed, locked, covered up; and the answer is ‘No’, DEFINITELY NOT. But today, so far, no one seems concerned).

I can’t help thinking of the greatly increased difficulty I would have faced making a trip like this just ten years ago. In fact, I doubt it would have been possible at all. The iPhone had not been invented; a device which is incredibly valuable to me. I can open Google Maps in a moment and find my way through the obstacle maze.  You might not imagine how difficult it can be to make progress without knowing where steps are going to be found.  Steps are the great, impenetrable barrier, and having to double back a couple of times on a journey can make a huge difference in power conservation and time.  Public transport apps are also brilliant, a trip can be planned in detail, but when something goes wrong an app will allow you to map an alternate route or timetable and know exactly which bus will come when, which bus stops it will or won’t pick up from; and vitally: whether it will be an accessible bus.

BiPAP ventilators were only invented in the 1990s. When I first began using a mask five years ago there were few, if any, that allowed you to keep your glasses on. The first technician I met said flatly, “You can’t keep those”. What a disaster that would have been! The newest masks I use are made with incredibly thin silicone and are (relatively!) unobtrusive. The lithium drill batteries that I buy from Bunnings to power the ventilator for many hours on the road were not readily available even 5 years ago. The giant laptops we all used a decade ago would not have made very handy communication devices; as do the tiny Macbook Air and iPad Mini that I take everywhere.  There are other examples of new technology that I could not live without, all of which leave me feeling astonishingly privileged.

(A uniformed man just stopped for a look at my Chug, but he kept going.  Queensland is such a friendly, relaxed place. When I come up here I want to stay.)

Privilege carries responsibility, and this I find oddly burdensome.  Tom Hanks’ character gasps out his dying words to private Ryan, “Earn this …. Earn it!” How do I do that? What exactly is the appropriate stance of a privileged life? If there is a debt, to whom is it payable? Is gratitude sufficient in itself, or does being the recipient of privilege come with implicit demands to repay society in some way? This life I have now feels to me like a second chance, a second wind.

(An alarm has gone off, I can hear the uniform coming back in his electric truck.  Is it a general alert? “Intruder in The Hive!”  Should I bolt?)

The other purpose of my trip was an annual review with a Professor of Neurology in Sydney. I saw him a few days ago, and he was upbeat, joyful it seemed, to see me still keeping on keeping on. He introduced me to another doctor saying, “I first saw this man in 2008!” As if to say, ‘can you believe that?’ The implication being that few of his 2008 patients remain at all, and fewer lead much of a life now. I have enjoyed these years so much, so very much, but I feel self-indulgent and wonder … why? … what for?

Time to unplug, power up, and get back on the track to my grandsons!

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Rejoice!

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* The Chug – the battery powered ‘tractor’ that pulls my manual wheelchair, and carries all the gear.

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Drop me a line while I travel …