Three stories about wheelchairs.

The week ahead holds great hope: three drawn out dramas could possibly be resolved.  (Number 3 is the best, so read on….)

Number 1.

I had a terrific little power wheelchair a couple of years ago which I bought after research and consultation with an Occupational Therapist. Small, and purely for use around the home, its primary virtue was that it had enough space under the seat to accomodate the ventilator with which I breath much to the time. Under-seat space on power wheelchairs is vanishingly rare, but I found a chair that perfectly accommodated one of my breathing/battery ‘rigs’. I purchased second hand, and sadly the little chair developed a motor problem after about 9 months, and it has been sitting in the corner of the garage for almost two years now. A single motor/gearbox unit is worth more than I paid for the whole chair. In October last year the NDIS agreed to fund a replacement, and a quote and supplier were lined up. But having approved the funding, some tiny dot was apparently missing on some form or other, and the funds were not released. With numerous phone calls, you probably know how it goes, it took a mere three months for the missing dot to be discovered, and the funds were released conveniently on the Friday before Christmas: effectively the last trading day of 2018.  By the time the company that had been paid for the wheelchair actually place the order in January, all Australian stock had apparently been sold, and the chair could not be delivered. It was to be March. Then it was to be April. May (apparently) is far more promising and last week they said, “next week (maybe)”.

Number 2.

Cracks in the rims of my wonderful, hi-tech manual wheelchair began appearing late last year. Towards the end of February the cracks became so serious that both wheels were well out of alignment, and a disaster seemed imminent. With great reluctance I dusted of Bugger, the faithful but vastly inferior hospital-grade wheelchair which I bought second hand in 2010. For the first few days using this heavy, ancient chair I wondered if an active life could possibly continue, and the intimidation and fear was overwhelming. But life did roll on. The cracks, by the way, are probably a legacy of using solid tyres rather than the more forgiving pneumatic inner tubes, for those who take an interest in such things. New wheels cost $1000.00.  Per side! So I consulted with a mechanic and we ordered the rims alone from America. After many weeks they finally arrived, and of course were the wrong ones. A “picking error” was the verdict. The second set arrived late last week, so that’s a mere 10 weeks after the first order was placed. And, all going well, the good chair will be back on the road this week!

I tell these two stories for a purpose, and not just to have a whinge. This is exactly how things in the disability sector play out, time after time. In our contact with families in Special Education, my Favourite Wife and I have seen many children wait far longer than this.  It can take well over a year, even two years, for an ungently needed wheelchair to be approved and provided, by which time the child has grown and the prescribed chair is much less than optimal. In the “able” world nobody would put up with such delays and, sad to say, such ineptitude. But in the disability sector the choices are far narrower, contracts tie you to single providers, and a host of other factors produce a mediocrity that is hard to tolerate. This is a rant, yes, but I am ranting on behalf of host of others. I’m ranting on behalf of people who don’t have the ability to self-advocate; and on behalf of parents whose lives are already stretched beyond imagining and who must also put up with endless, intractable problems with funding and supply. 

With that out of the way…

Number 3!

Over 9 years I have made four applications to become a volunteer pastoral visitor in our local hospitals, and this week I am accompanying the Health Service Chaplain to a neighbouring town to visit a facility that currently has no pastoral care. I have been in a truly excellent training programme over the past three weeks, and now, finally, I’m approved and ready to start. I made my fourth (and final!) application to become a volunteer visitor last year, at the same time that I returned to woodwind playing on the strength of a remarkable change in medication. My first application, 9 years ago, failed on the grounds that I had just missed the mandatory training programme that was only held annually, which is fair enough.  Attempts 2 and 3 were made to a different Chaplain in the Health Service, and both failed on the astonishing grounds that he considered a wheelchair “unsuitable” in a hospital setting. But his reign “came to pass”, and the new Chaplain is welcoming and altogether good.

A big week ahead! 

(I hope….)



I have decided to no longer link my blog posts to Facebook, for reasons I will soon write about here. As a result I believe Rejoice! is now only read by a handful of people, down from the heady days when it was read by many hundreds each week.  But I’m still here, and would still love to hear from you!

All there is, is is. *

“I’m not sure I’ve seen a Rejoice for a while” a good friend wrote yesterday. Very true. But today is a good day to fix that: I am filling in 12 hours while a derailed train further south is tidied up, and then my train will, hopefully, depart. img_1936

Goulburn early this morning.

It wasn’t exactly writers block that silenced me, I have been tongue-tied, or finger-tied, for several months. I haven’t known what to write because The Miracle, whatever it was, didn’t stick. The dramatic, unbelievable improvement wrought by a little white pill lasted only 5 months. It still does its job, but other breathing symptoms encroached on the newly won ground.

It’s a story I didn’t want to tell.  I like to tell a good tale, something triumphant, and I dislike the taste of weakness. And to be honest, it was a story I wasn’t entirely happy to think about either. Last year I convinced myself that I knew what the diagnoses was, believing it to be a treatable condition even though the Neurologist patiently said he didn’t agree. It was a hard landing, to say the least, and yet here I am one year later in a similar trap. I thought I had learned the lesson, but once again I dared to gaze on the promised land of a treatment and a long, capable life. How do we process such disappointment?

Most of us ask: “Why?”
I have a friend who was suddenly incapacitated in his twenties; you may remember meeting him in these pages on occasion. Christopher awoke on an ordinary morning to discover he could no longer use one arm, could not walk, or speak, or to some degree even think. His life is very tough. We talk frequently, Christopher and I, and he says over and again, “Why, … Why?” I often reply that there is no why, all there is, is is.  (That’s a tricky little phrase: three ises!).  There is no moving on until we embrace the day at hand.

Or we might try: “What if……”
A perilous rumination! What if  the miracle drug had shown itself three years ago?  Six years ago?  What might I have achieved then?  I had to deal with a similar trap almost a decade ago when I finally succumbed to a wheelchair: What if a health practitioner had advised that step early in the game? Surely someone amongst the myriad of doctors and therapists involved might have though it worth mentioning.  I sometimes think I could even have kept my job. 

Events that make no sense are the hardest to deal with. At such times the scale of my disappointment sometimes exposes my dreadful immaturity. If misfortune has some tangental purpose it is far more easily embraced. If a well planned holiday evaporates into thin air hours before you were to leave the disappointment can be overwhelming; but when you discover that a child is ill, or you land a big contract because you stayed at home in your office, it all makes sense; we may even feel grateful for the unwelcome turn of events. Right now I want be on a train, heading home to see two young granddaughters, and their parents, who have been travelling for months; but instead I have just spent a couple of hours with a great friend who lives far from here. He happened to send me a picture of the Harbour Bridge, (a little habit we have when travelling) and we soon realised we were both on trains heading in opposite directions towards Circular Quay. Amazing! Any redemptive purpose makes a world of difference.

Well, so much for the theory.  In practice I am holding on tightly to the ground the miracle drug yielded in June last year.  Back then I had returned to the recorder consort I play with at the Conservatorium, and although the going has been rather tough a fortnight ago I played a solo passage from the Bach Cello suites on bass recorder in a small concert. Ground worth defending!  At long last, in fact on Friday this week, the training for pastoral care practitioners in the local health service begins. I’ve tried four times in recent years to volunteer with the chaplaincy programme – and I shan’t give up now. Ground worth fighting for! I’ve been taking drawing lessons at the art gallery this term, and as proven non-drawer, I’ve been quite surprised with the results.

I drew this!

Ground to be taken! And best of all, perhaps, Teen Girl, with whom I took endless bus-training trips last year is grasping her independence in leaps and bounds. Last week she managed to sneak out of the house one morning without saying goodbye, and found her way to TAFE on two connecting busses without our help. I had rung the TAFE to say she was unwell and wouldn’t be there; and they rang straight back to say, “She’s here!” Riding a wave of success she somehow escaped the house on the next two mornings – with no goodbye – and found her way to a different location completely unaided. “But that’s what teenagers do!” she told me on the phone last night, and we couldn’t be more proud. And she and I have more ground to conquer yet

I wonder, sometimes, if the trials that make no sense are a test of trust: if there is nothing to placate our loss, no hidden purpose, what then do we believe?




*All there is, is is.  Well, perhaps “is” isn’t ALL there is……

Post Script.      (Optional further reading).

The twelve hour delay in Sydney was fourteen in the end, but I am now onboard the homeward overnight train.  When I was at university the night train was called, for reasons I can’t recall, “The Rattler”. Probably because it rattled. It stopped at every little town and siding, or in the middle of nowhere for who knew what; and it took forever.  The preferred place to sleep, if you could find an empty one, was the overhead luggage rack. If you could climb up and wind yourself in under the hanging brackets (which at 6’7” was always a trick), you could get a good nap. It had a nice comfortable curve to it, the luggage rack. Which has nothing at all to do with my post script.

I attempt on most mornings to copy a thought provoking quote into my journal, and I come back to chew it over again at some point, often late at night. Quotes come more often than not from Scripture; but others come from books, poetry, films, or something from a conversation or from the radio: whatever grabs my attention. For some reason I decided last night what I was going to write in the morning. While I was packing for an early morning rush to the station some little underused bit of brain had selected a familiar New Testament passage, one that I love dearly.  This is it, make of it what you will:

Rejoice in the Lord always; and again I will say Rejoice.
(You can see the appeal, can’t you?)
Let your gentleness be known to everyone. The Lord is near.
Do not worry about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus.


Any thoughts to share with me?

What Maketh a Miracle?

November 2018

A few weeks ago I played recorder on a Sunday morning, the first time in fourteen years that I’ve played with a church band.  Such a pleasure, but I wondered where so many years had gone; playing guitar, flute or, best of all, clarinet had once been part of every weekend. Long, long ago I used to take my clarinet to conferences, even big ones, and ask the band if I could join in. Times do change! 

My Sunday gig was another joyful offshoot of the dramatic change brought about by a small white tablet in June this year. As I wrote in Back to Bach my ability to breathe improved immediately and dramatically.  Very soon afterward I knew there were three things I wanted to do:  Play again with the recorder consort I had left 18 months ago; play with the musicians in our church, and try (for a fourth time) to join the chaplaincy team at the Public Hospital. More on that another time, but here I want to relate a curious experience on that Sunday in church, when I first played my renaissance recorder alongside the traditional electric guitars, piano, drum kit and so on. 

As we finished our quiet little acoustic bracket and were leaving the platform, the speaker for the morning had taken his place and began by saying how glad he was that I had been playing, and doing something new, having received a “miracle of healing”. Now, whatever you may think of it, that language is familiar enough in many churches. But on that morning I found myself oddly averse to it, and as I’ve thought it over for a few weeks since my unrest has only increased. As a result I’ve been feeling somewhat like a pagan ever since.  What is this about?

For a start, I dislike being pigeonholed. The dreadful phrase, “confined to a wheelchair” is one that I’ve encountered infrequently, thank goodness, but it is a potent example. In addition there is the fact that if there is a story to be told about me, I want to be the one to tell it.  Prideful, I’m sure, but there is a lesson there: in subtle ways I think we often tell other people’s stories, sometimes with words, sometimes as private musings in our secret mind.

But most significantly I don’t want the label “Miracle”. A miracle, in Jesus’ time, was rescue for the overwhelmed: the demon possessed, the crippled, the oppressed. If you were beyond hope, you could be rescued nonetheless.  While I am joyful in having this second wind, and deeply grateful, I still can’t call it a miracle. The word is too pat, too simplistic. The word ‘miracle’ conveniently overlooks the wonder of modern science and medicine – and it truly is a wonder. And ‘miracle’ has an uncomfortably arbitrary feel: why this, and not that?  Why me, and not them? ’Miracle’ also requires Divine Intervention: God must come down. Yes, God indeed has come down, but that’s the very point: God has not left.   

I have come to think instead that my second wind is yet another experience of the abounding providence that has filled the last ten years of my life, since a day in 2008 on a wintry beach where I first found myself running unaccountably slower than top speed as I raced with my daughters on the sand. (I still won though, in case you were wondering).

I am sure that as my reader you may vehemently disagree with my conclusion; or you may be bored witless by this essay, and quite possibly you will not have read this far anyway. Or you may be wondering what the fuss is about, concluding that I am simply playing with words and definitions. To me, though, this matters very much, and Rejoice! has long been a well of clarity for me, if not for any other. In order to tell you, I have to know what I think. You are my critic, my sounding board and mirror. 

image1As I conclude this page I am by the shore of Lake Hume.  My Favourite Wife is a yellow dot, her kayak way out on the water. I’ve been practicing Bach Cello Suites on recorder, naturally, for a lesson coming up. A day like this is easy to embrace, obviously! But I think the miracle I most desire in life is to have grace enough to embrace every day that comes to me; especially those days most unlike this one.  Not sufficient grace, but an abundant, overflowing love for life, and for everyone we share life with, on every day. And to that end, I am resolved that the gifts of faith and gratitude are life’s true miracles. 



The good life.

October, 2018

Today we celebrate 29 years, Favourite Wife and I.  We are toasting with champaign and Christmas pudding (pillaged from our stockpile), as the afternoon sun dapples the shady verandah of The Karenvan.


IMG_1327This morning we were living the high live in the Victorian alps, where there is still more than a metre of snow – astonishing in a drought. We woke to see the sun cresting snow covered mountains, in the same crystal blue skies we enjoyed yesterday when we took the chair lift way, way up to the ski fields. We bought hot chocolate and apple pie at the top, and sat outdoors in warm sunshine and brilliant white snow.

On the way down the mountain we stopped for lunch in a steep valley where two rivers meet. This secluded spot was a great discovery, and we boiled our billy beside the hectic, churning convergence of snow-melt in the junction of the swollen rivers.

“We have a good life, don’t we?” one of us asked, cup in hand. 

Indeed, we do. 

The remainder of our lunch in the green, secret gorge and the whole drive back here to the Lake was not enough time for us to compare our thoughts on just how good our life has been as the years have passed, and how rich, how prosperous, our life is now. Our freshest recollection is only a week old: last weekend we celebrated my Favourite’s 60th here at the Lake with friends and family. For a week we had all our children and our seven grandchildren coming and going, visiting and living here in the park.  We took a dozen tennis balls and almost as many racquets to the tennis court and set a new family record of a five – FIVE! – shot rally. A bright yellow birthday kayak was paddled way out into the lake by its 60 year old owner who had only been on the water twice before in her life (an adventure on her 50th birthday, as it happens); demonstrating the courage and vitality that will carry her into the future.  Some of us even went swimming: chilly, but great fun. We played games and did craft with grandchildren through sunny days, and spent cold evenings with the adults huddled around the tall yellow flames of the gas heater on our veranda, exchanging stories and details of our very different lives. 

Of course life isn’t always week long party, and we aren’t without our harrowing stories as well. There are the essential tales of hardship with which all parents must regale the younger generation, (We were married for ten years before we purchased our first brand new item of furniture! True story.) And there are the times we don’t mention so often when, like any family, we have felt frayed and weary and all but torn asunder by the rough handling of life. We’ve both had brushes with mortality. We’ve borne the pressures of finance, self-employment and business. Home buying that went wildly wrong. Relationships stressed near to breaking. We have lost dear family and friends, faced serious illness and other great sadness.  And, of course, there are wheelchairs and breathing machines, even out here at the beautiful Lake. All that challenging stuff, common to mankind, one way or another. 

Late in our anniversary day we came upon two more questions: What are we each looking forward to? and, How do we live faithfully with such privilege in our lives? The first was easy and very engaging. But the second question is more demanding, elusive and, for me at least, troubling. All our answers are far too personal to tell, but the questions I highly recommend.



Give us a “Hoy”!……..

Teen Girl and a Bus

So, Teen Girl was with a support worker at the Gym after school, and they rang me to propose a trip to a music shop before I was to meet them at the bus terminus in town. Fine with me.

T. Girl and I meet at this spot each Thursday, and we catch the bus up to the park just around the corner from Paradise, our home.  But as the time for the bus approached there was no sign of them.  With the oncoming bus distantly in view I received the phone call I had been sensing would inevitably come: the one where our brilliant young support worker tells me that Teen G. is slightly less than cooperative. They were still inside the music shop which I could see diagonally over the road, and someone was refusing to budge. The bus rapidly approaching from the opposite direction happened to be the last one on our route for the day.

Moments later I can see our support worker waving to me from the footpath outside the music shop, the bus only metres from our stop, but no sign whatever of daughter.
… … … no, actually, here she comes!

The bus has now pulled up, and the driver is standing on the footpath having opened out the ramp for me to wheel on. And there she is, now on our side of the road but still a hundred yards away, walking at exactly her ordinary speed and not a pinch more.  Teen Girl’s “ordinary speed” is half stroll and half dawdle; and as usual the imminent departure of a bus was not registering with her as a problem at all. Her Favourite Mother (she has several, including the Elf Queen, Lady Galadriel from The Lord of the Rings) and I are quite unable to decide why she is perpetually unconcerned by keeping others waiting. It is nothing at all for her to insist on brushing her teeth in the morning even when the school bus is sounding its horn at the bottom of our drive. Is she genuinely unaware of inconvenience and courtesy? Or is she just stubborn beyond imagining? We are leaning towards the latter.

But when she finally arrives at the bus, where I have been attempting a nervous and tongue-tied apology to the bus driver, the oddest thing happens. Teen Girl gives the driver a great big hug. And the driver responds wholeheartedly, happily introducing her to a trainee driver who I hadn’t had time to notice yet, saying something like, “This girl is one of our favourites, she’s a very good friend to all the drivers and we look out for her whenever we can.” It’s now well after five minutes since the bus should have departed, but here we all are on the footpath, T.G. lapping up all the attention, smiling and laughing with the two drivers and shooting an occasional look in my direction which I’m sure says, “Why do you carry on so much Dad? Everybody loves me.”

It is at this point that I learned from our support worker that the only reason she exited the Music Shop at all was because of a bribe offered by the store owner: a bright pink guitar pick. Why on earth, we said to each other, are there so many people eager to reward poor behaviour? This is such a regular occurrence in parenting a child with down syndrome: it often feels as if the whole world is determined to undermine any progress we make!

This dynamic makes us scream inside, but is wonderful none the less. Wherever she goes, day in and day out, she brings a clear and simple light into peoples lives. For her school teachers and her parents she offers certain other gifts as well, gifts that no doubt help us achieve our full potential in patience, long-suffering and grace; but if we were to tally it all up the bottom line would be utterly positive: she is a gift.

Parenting a child with a disability is window through which the world looks very different indeed. You learn to eschew demanding questions such as Why? What if? and If only. You are trained through so many years to accept that reality simply is. You also learn that the stereotype seen in countless movies of the disabled person who solves the deepest problems and brings joy to every home is pure bunk. You learn that there is not necessarily a happy ending, that so many things simply do not go well, no matter how deeply held your hopes and dreams might have been. But you also learn how profoundly we need one another, that weakness and strength are not easily distinguished, and that simplicity is so often beautiful.  

I’ve learned this, or hope that I have: Life is not fair, not at all, but neither is love. Love can’t be earned, true love can’t even be lost, love recognises no barriers at all, it is not impressed by strength or by weakness, and pays little regard to the the realities we humans find so difficult. These words from the New Testament have been somewhat over-used at weddings, and we we can be de-sensitised to their astonishing worth:

Love is patient, love is kind. It does not envy, it does not boast, it is not proud. It does not dishonour others, it is not self-seeking, it is not easily angered, it keeps no record of wrongs. Love does not delight in evil but rejoices with the truth. It always protects, always trusts, always hopes, always perseveres. Love never fails.



 I’m sure this could have done with some proof reading, so please don’t dwell on my errors!  Write to me instead:


Back to Bach! A second wind.

August, 2018

I have rarely felt delight in life quite like this, unless it was marrying my Favourite Wife, or the arrival of a child. To have farewelled a dear friend, bound for a distant land, and then to find them again, unexpectedly, and to walk arm in arm once more: this is a pure and bright joy. I feel like a ringing bell, chiming gratitude to all creation. (I am waxing appallingly lyrical – I know it – but read on, and I don’t think you will blame me).

On the table in front of me several pieces of music are spread out, some I’ve just played through in anticipation of an eisteddfod competition coming up. These little black dots, lines, wiggles and squiggles, this universal language little changed over centuries, has suddenly come alive to me again, almost two years after I believed I had put it aside for good. As I wrote in Loosing What you Love early last year, it was a painful trial to reach the end of my life as a very amateur woodwind player; but now I have the unparalleled exhilaration of a second chance.  A month ago I rejoined my former recorder consort, The Treblemakers, and I can once again practice for an hour at a stretch, sometimes more, all because of one little tablet. Just one.  A tiny white pill.

Midwinter ice!

I am writing at the small table we live around in The Karenvan, our idyl, our holiday home fourteen minutes from our own front door. It’s midwinter, the solstice just days ago, and mornings are white with frost. We came here for an afternoon last week and stayed till 10pm, just to see if our little old caravan, with its slightly newer annex, was liveable in the hibernal dark. With two heaters on high, it can be done!

The idyllic Karenvan – a summer photo, admittedly.

We have come back again for a few nights, and today we had two of our grandchildren with us, and two of our delightful daughters.  We played tennis this afternoon; although truth be told it was all play and no tennis. “Hit and Giggle” my mother would have called it. But with this new lease on life, a second wind, I rolled around the court with no need of the habitual breathing machine for a good couple of hours. I can now sit with friends or family for an hour or two at a time, sometimes even more, without the NIV apparatus (Non-Invasive Ventilation is the clinically alarming term the respiratory physician uses) that has become de rigueur. I feel better than I have in several years.

Oddly enough this astonishing, almost unbelievable transformation began with an idea of my own. For a long time I’ve taken a particular drug which years ago made a marked improvement to my speaking voice. But it’s a strong medicine; and has the odd effect of making it very hard at times to wake up. Because of this I decided to reduce the dose, with Dr’s oversight, and stop taking the drug.  But when I did my eyesight deteriorated so nauseatingly that I actually threw up. Twice.  It was appalling, but gave me an obvious idea: would increasing the dose improve my vision? So, I proposed this to the GP, and began an incremental increase.  Sure enough my vision soon became significantly better. But I found it disconcertingly weird that a tablet could improve eyesight, so I asked the GP if it made any sense.  The drug acts on nerves, I learned, causing muscles to relax, thus taking longer to fatigue.  How simple is that?

And this gave me another idea. On the next six-weekly visit, I asked if there were other muscle relaxing drugs that we could experiment with. The Dr. was a little cautious, I must say, but I persisted with my proposal and left the surgery with a script.  That was a Friday afternoon, and on Saturday I took the first tablet. It made no difference at all, but the GP had said that it would take a few days. Sunday, nothing. Monday ….. maybe.  Tuesday, I feel rather good.  Wednesday: astonishing.

From early this year my breathing had noticeably worsened.  I became unable to lie down in bed for more than about 5 hours. At the beginning and end of the day small tasks were taking a toll, and I was spending more and more time sitting still to get my breath back.  This symptomatic decline had begun to cast an unwelcome shadow over life, I have to say. I had discussed it with respiratory physician who said that there were palliative medicines that could be used, but I would do better to postpone their use as long as I could. She explained that the word ‘palliative’ only means ‘to alleviate’, but it’s still not a word one wants to hear. But all of that is gone. Gone!

Much of the challenge still remains.  I can’t see so well, and the wheels on my chair are as necessary as ever they were. To date there is nothing new known about my condition, but out of the blue a treatment has been discovered.  I know nothing about the future, how long this treatment will prove effective, what the prognosis was or is: nothing. But my days, which were happily full and satisfying, are abounding with new life and hope. 

fullsizeoutput_86bThe timeless dots on the pages in front of me are begging to be played: they are notated joy, the promise of music, of community, of life.  Also on my table is a beautiful plum wood renaissance instrument which I have just purchased from an oboist in Sweden as I had given my precious recorders away to younger players.  It beckons, and I have to turn back to the dots!




Do write, I’d love to hear from you.

Giving the Train a Fighting Chance

Sunday July 1st.

2.15 on a Friday afternoon, and I have boarded the town bus, heading for the station to meet the 3.11 train.  My Favourite Wife and I are spending a weekend in Melbourne; for her it’s mainly Auslan training, for me it’s mainly JS Bach concerts.  Teen Girl is in respite care, which is as painful for us as it is for her, but she always has a good time once she gets there.  This is our first trip together in quite a while; soon we will meet on the station platform, and we will be on our way!
The train leaves at 3.11pm … … precisely … … and waits for no man … … keep that in mind … … 

2.16 pm       The bus goes around a corner, and instantly I’m facing a different part of the bus. This is not as it should be, and I quickly conclude that one wheelchair wheel has not locked properly. On inspection, one brake lever on Bugger (I’m feeling like reviving the old name) seems to push down far too easily. Now, why would that be?  It takes me a moment, as this has never happened before. It’s a flat tyre, the second flat tyre this week. The first flat tyre I’ve ever had on a wheelchair – ever – occurred two days ago, on Wednesday, when I had pneumatic tyres fitted to Bugger.  The mechanic pushed the finished chair out from his workshop, and as I was fitting everything back onto the chair he said, 

“Hang on, somethings not right here” 

and before our eyes one tyre began looking less and less interested in work. 


This was not a promising start really, as I had been debating the pros and cons of changing to pump-up, pneumatic tyres for several months.  For 8 years I have run solid tyres on my chairs to avoid the possibility of a flat, but I’ve noticed that serious wheelchair people run pneumatic tyres; so with much consideration, and apprehension, I am giving it a go. It takes the mechanic a further two hours to make several attempts to repair the tube, and finally, in defeat, nick one from another wheelchair on the floor.  But back to the present…….

2.28       It has begun to rain, but there is a bus shelter at my stop, and once off the bus I immediately unpack a good deal of my gear to find the toolkit, buried deeply under the seat, and begin to change the tube. Just yesterday I had visited the bike shop and stocked up on tyre levers, a spare tube, puncture repair patches and little pressurised cylinders that take the place of a bulky hand pump for filling tyres. I’ve not changed a bicycle tyre this since I was a kid, but it feels familiar and I am pleasantly surprised how quickly the job is done. A moment to pat my own back and I’m packed and ready to go, if a little wet around the edges.

2.39       Too quick by half, it would seem. I have another flat. I assume I’ve pinched the tube when I was getting the tyre back on. One option is to repair one of the the two punctured tubes, using the rain to locate the hole.  This is a dumb idea: using the rain, as if!  Therefore the only option is to make a dash through the rain to the bike shop, which is so very fortunately located between the bus stop and the train station about a kilometre away. Some more quick unpacking to get the rain cape, as the rain is getting steadily heavier. 

2.41       I’m soaked, despite my usually reliable cape. This rain is now pelting down. Travelling with one flat tyre is not the easiest thing; neither is steering a wheelchair in the rain with treacherously slippery push rims and leather gloves.

2.45       It is now hailing. Heavily. But the hailstones are mercifully small, and do no harm.

2.49       Absurdly, the sun comes out with startling speed, and my first thought is that now nobody will believe me about the hail. 

2.52       I’m in the bike shop!  As a considerable puddle of water emanates from my chair and discarded rain cape I try to sound mater of fact and ask if someone could possibly fix a tyre. I don’t want to beg, but I do mention that the train leaves at 3.11.  This is the very same bike shop I was in yesterday, and the fellow who sold me yesterday’s supplies is amused.  I’m also amused, which worries me because I have noticed that I do tend to find potential disasters energising, and often quite funny.  This is a point at which my Favourite Wife and I differ, considerably. She will have played safe, and been on the platform for quarter of an hour at least, whereas I like to give the train a fighting chance.  

2.56       Two cycle aficionados (aficionadi?)  are debating which of two tube sizes would be more suitable, as my 25” wheelchair rims do not have a corresponding bicycle wheel size.  I knew this already, but I’m not an aficionado. They settle on the one I had, as it happens, asked for. 

2.58       There is a problem. My wheel doesn’t have the tape that usually sits over the ends of the spokes and protects the tube. (I’d actually wondered about this way back at the bus stop, so perhaps I am an aficionado in the making?).  Would Sir like tape with his order?  Well, yes, but the train does leave at 3.11!

3.01       I’ve gone to the front of the rather large shop, paid them for their trouble, and for two more tubes and more little gas cylinders, just in case, but there’s no sign of a wheel yet…  

3.07       I am at the train station, on the platform! 

Honestly, what was all the fuss about?
But where is Favourite Wife?  I’m ringing her phone.
There are several messages from her that I have failed to notice – and do you blame me?
Why won’t she answer?!
But at the very edge of my awareness I hear a little voice. Where is it coming from?  Is it behind me? Is it saying “Maynard, Maynard, Maynard”?
Yes, it is!  This is my 3 year old grandson with his Mum,
and his Grandmama,
and here we go!



Post Script:  Next month I have a far richer, far better, almost miraculous tale to tell …. but not just yet.  I need to be sure. 

Post – Post Script: Two weeks, and my flat tyre count is now four.  Will I persevere?


My Ugliest Invention

June 2018

The little SmartDrive motor on the back of my smartdrivewheelchair is superbly good; it is reliable and more powerful than seems possible, but up our hill it will not go. The gradient from the bus stop back to our home in Paradise is a little too steep and a little too long. So this is my solution:  a motorised box full of bricks.

There is no photogenic good side, this machine is ugly from every perspective.

Ugly, but valuable, which is a lesson in itself. It has no name, it’s just “the thing that pulls the wheelchair up from the bus stop”.  It is a power wheelchair, radically alteredA seat belt connects me to it; and the joy-stick, freed from the restraint of a wheelchair armrest, reaches all the way back to a tray on my lap.  Steering is accomplished not by the joystick as much as by foot pressure on the rear wheels of the ugly thing.

And right now it is very busy indeed.  Teen Girl finishes school this year, and she and I are out on the busses several afternoons each week preparing for the big changes that she will face when adult life kicks in.  My hope is that she will become competent enough to travel by bus on her own by the end of this year, and independent enough to lead a busy and varied life in the year to come. As you may know, Teen Girl has down syndrome, which makes bus travel both a challenge and a delight in some rather unique ways. 

The delight is in the people we meet.  Nothing pleases her more than an opportunity to introduce herself to someone new, and busses are full of people.  One of the bus drivers made the valuable suggestion that she could sit in the front seat where she can talk to the drivers and get to know them. The first time I suggested this she plonked herself right behind the driver, staring at the black glass wall behind his seat.  Needless to say, this didn’t really work.  But when we got it right and sat across the aisle on the next bus she didn’t need any more prompting: there is little in life she likes as much as a good chat, especially with a captive audience.  Richard, like a number of our local drivers, has a warm heart and is always on the look out for people that need a little extra help.  It amazes me that sometimes when I get to a bus stop the driver will be waiting for me at the door with the ramp already out. This happens because the drivers talk to each other on their radio, and they keep track of particular travellers who are out and about, myself included. I have been talking with several of them for some weeks about our plan to see Cassie travelling on her own, and their support is wholehearted.

The challenges are both obvious and hidden. Timetables are always going to be obscure to her I think; but by sheer repetition, week in – week out, we are beginning to get a sense of when the bus leaves. Packing one’s earphones, iPod, drink bottle and purse away before the bus actually stops to let one off is a novel idea; one which is not supported strongly as yet.  One curious challenge has caught me by surprise: when to press the bell to get off.  Teen Girl tends to leave it much too late, until 15 tonnes of bus is barely meters from the stop. This can make a driver swear, no matter how benevolent they were feeling up to that abrupt point.  Or she goes far too early, one or two stops early!  Weeks into our project, including collaboration with willing school teachers on yet more busses, and a sense of spatial awareness is still elusive.  

This is an exciting time, I am thrilled by the possibilities.  My volunteer position at our local Library led to a work experience opportunity being organised for our daughter. Thanks to the wonderful NDIS, a worker was engaged to assist, and for one hour every Friday Teen Girl can be found doing a number of tasks in the Library which, frankly, astound me. I would not have believed she would be capable of shelving books in alphabetical order, but she can; and the staff tell me she is remarkably quick on the uptake of new jobs they give her. Our ‘shifts’ overlap by ten minutes, which is rather nice as she seeks me out for a very warm hello and goodbye. More importantly for her though is another visitor towards the end of her shift: a Companion Dog who comes into the Library for a weekly activity called, “Pat and Chat”. So this lovely, wooly Collie is on hand as a huge reward for a job well done at the end of her hour.  If there is one thing in the world Teen Girl loves more than meeting people, it is meeting dogs.    

So at the end of this rambling yarn I realise it has had little to do with my Ugliest Invention after all, and much to do everyday life in our family. I was going to boast about how I completed the whole ugly contraption, from concept to complete project, in an hour and a half (true), and go into detail about just how the wooden box full of bricks produces necessary traction on the tyres and the technical problem that prevents steering with the joystick (boring). But instead I talked about our cherished, delightful child and the life we share with her, and the amazing way her world and mine, each with its unique challenges, are such a good fit. I have lots of time free to spend with her, and because I no longer drive I know the buses of our town inside out (and I have the ((ugly)) mechanical means of getting up the hill again when we are done!). The way things work out in life is sometimes so beautiful, so intricately dove-tailed, and so abundant, that the phrase “things work out” is just lame! Surely there is a plan and a purpose in all of life.




Love to know what you think…

Standing Up for the Sitting Down

May, 2018

A large portion of all conversations that I overhear whilst on a bus concern the apparently limitless ways my fellow passengers are let down, betrayed, cheated, insulted, abused, reviled, vilified and unbelievably wronged! I sometimes wonder just how it’s possible that a single person could attract quite so much hostility and plain bad luck, but evidently it can be achieved.  For myself, I find the world a largely pleasant place, and I have to think hard to recall an instance when someone has been rude to me in public.  But, it can happen.

This is a letter I wrote a while back to a medical practice:

Dear etc etc,

I visited the practice yesterday for the appointment recorded on the card I have attached to this letter: 1pm on the 12th (etc).

Unfortunately the receptionist could not find an appointment on your system.  I did not have the card with me, as I had transferred it to my diary, but I was able to check my diary at the counter, and I knew with virtual certainty that I was there at the right time.

The appointment had been booked a week earlier, on Monday 5th. I had read some paperwork for the procedure at the counter, and the receptionist had made the appointment and then written it onto the attached card.

My reason for writing is not about the apparent loss of an appointment on your system, but the way in which it was handled. At no point did the receptionist I met yesterday offer anything like an apology for the error, the inconvenience, for the portion of my day that had been wasted, or for the fact that another appointment had to be made.  It was a brief conversation, and at one point the receptionist repeated what had already been conveyed quite clearly, and which I had just as clearly understood, saying, “What I am trying to explain to you is that there is no appointment on our system”, as if the issue were not one of software or human error, but somehow lay in my failure to comprehend the problem. 

I use a wheelchair, and just occasionally I feel the need to ‘go in to bat’ for other wheelchair users. I understand the point I want to make here is difficult to defend with evidence, however please bear with me. I spent my adult life up until a few years ago as a normal, ambulant person with a career and so on, and I feel sure that if I had been standing in a shirt and tie at the counter yesterday, rather than using a wheelchair, the conversation would have taken a different course. Impossible to prove, I admit, and I appreciate you may not agree with my comments, but I would ask you to please give them consideration. 

Becoming less-abled has been a revelation to me, and I see the world from a new vantage point. I have observed both myself and other similarly challenged folk treated in the most curious ways. For example, it is absolutely true that a person will sometimes raise their voice considerably (and even lean in to make extra, extra eye contact!) for people in chairs; I have experienced this curious phenomenon many times, very occasionally even with a health care professional. I sometimes sense a probably unconscious assumption that a disabled person is disabled in a global sense, including mobility, hearing, intelligence, independence and who knows what else. I feel I understand this mechanism to some degree, but I believe it is helpful if it can be carefully considered, particularly by healthcare providers.

Thank you for reading my letter, I wish to add that I am very pleased to be a client of your practice.

Yours faithfully, etc etc.

fullsizeoutput_845To their great credit,fullsizeoutput_844 the practice took my letter seriously and conveyed in a well written reply the steps they were taking to address my concerns. But I can’t help thinking of the many people who do not have the ability, or perhaps the courage, to put pen to paper and assert their right to courtesy. Though I feel the bus-cohort may be ever so slightly exaggerating their complaints, with their endless affront, and their studied victimhood, and their appalling entitlement; I do think there are people who routinely get short shrift, who endure mild and even malevolent disapproval in their ordinary encounters with the public. Most of these will be people who do not fit. They will be disabled or disfigured, perhaps with a wheelchair, but just as likely an indigenous person or a refugee. It might be young person who doesn’t uphold ‘normal’ standards of presentation.  An old person unable to deal with new fangled speed and complexity. It will be someone who falls short in the power dynamic of everyday interaction, the language of dominion.

This is common cruelty, and we should champion each other when we meet it.  

So next time you see someone on wheels overlooked in a queue for service – exactly why this happens is still a mystery to me – stand up for them!



Do write!


April 2018. (This is a long one, 1243 words! But as a monthly essay perhaps that’s permissible?)

“What do you mean ‘accessible’? All rooms are accessible, aren’t they?” 

I was booking a hotel room recently, and this is, verbatim, what the man on the phone said when I asked for an accessible room. Taken aback, I stammered a reply. Though I don’t recall what I said, I do remember exactly how I felt: I felt cowed, timid, afraid, foolish and apologetic. Why on earth?  He was self-evidently the goose, not me!

The answer lies, I think, in an “acclimatisation to imperfection” that I am negotiating this year. Not that I was ever perfect – my Favourite Wife will vouch for that – but compared to former levels of competence, I’m fast transforming into a nincompoop. I’m so accustomed to making really dumb mistakes that I assumed I was the fool, as usual, not the ignorant hotel clerk unfamiliar with Accessibility.

My incompetency list:

I run my wheelchair into doorjambs. This was once the rarest occurrence, virtually unknown, but with prism lenses my depth perception seems to be all over the place.  As do the doorjambs.

I run my wheelchair into just about anything.  See above.  Except pedestrians – there I have an unblemished record, thankfully.

If it’s liquid, I will spill it. Tea, sauce, paint, milk, ink. I’d like to blame the glasses again, but I fear it’s just escalating clumsiness.

I can’t remember the next one.

Forgetfulness! That’s it.  You know that thing where you go to another room to get something, and can’t remember why you’re there? I can’t remember which room I was going to, or the one I left. I seriously think this is a breathing issue, which sounds like a lame excuse, but I’ve noticed that as soon as breathing is challenged, all mental resources are subverted to solving the air crisis. I’ll soon have to start listing my lists, that’s how many bits of paper I’m carting around.

Stamina.  For a long time I have had help at home every second day – which I’m not sure that I’ve admitted in these pages before. Well, as of March the workers come every day, and for twice as long. Simple things that I have had sole charge of for years while Favourite Wife is at work, things like washing up, hanging out the clothes, folding the washing … they thoroughly beat me.

Bus bungles. With multifocals relegated to the past by worsening vision, I now have one pair of glasses for following the bus route on my phone, and another pair for looking out the window to see where we actually are, and sometimes a magnifying glass to boot. More than one bus trip has been botched by pressing the bell at the wrong time, having then to call out apologetically to the driver to keep going. On one trip I pressed it wrongly twice!  And this in a significantly public arena.

But, but, BUT!

Do not think for one moment that I am complaining or dissatisfied. Not for a second: this year, my 56th, is without skerrick of a doubt the best year I’ve lived. Not long ago our family of 17 traveled the high seas together, and a week before we set sail we purchased The Karenvan, which has given our family the richest summer in years. Life is extraordinarily good, and yet there is more to say.

“One of the best-kept secrets, and yet one hidden in plain sight, is that the way up is the way down.  Or, if you prefer, the way down is the way up.” 

This resonating quote comes from Richard Rohr, in “Falling Upward: A Spirituality for the Two Halves of Life”. In this thoughtful book Rohr contrasts our early life spent seeking and establishing security in all facets: physical, emotional, financial, spiritual, and so on; with the tender, relaxed confidence that may be found in the second half of life. But the path to that wondrous state lies in loss more often than gain, and who likes to loose? As Rohr says again,

“We do not want to embark on a further journey if it feels like going down, especially after we have put so much sound and fury into going up.”

In the pages of Rejoice! I have run into a dilemma. Some of my readers, particularly friends from school, family and others of a non-religious persuasion comment that I should lay off the spiritual chit chat.  “Shut up”, put more plainly.  But many readers come from the years we have spent in church life; and for them it’s “more, more!” I can’t stand ‘Bible Bashing’ and find the notion of converting someone to my faith problematic.  But to avoid mention of my spiritual life is simply duplicitous. So, heathen, you have been warned!  Read further at your peril.

The joys of my 56th year are not simply material, not just a matter of travel and peaceful days at the lake. I dare to say that in our home and our broader family you would find many of the serious challenges that ordinary folk face. Our budget is tight and my health precarious; our minds often preoccupied with the cares all parents know well. But I enjoy a degree of contentment so expansive that I find it hard to explain. Like Eric Olthwaite’s mother’s Black Putting which was so black “that even the white bits are black”, the world often seems to me so good that even the bad bits are good.

How can this equation be balanced, where the experience of less feels like so much more? I have no glib answer, but can relate an experience.  We pray in our home; Favourite Wife and I begin most days by lifting up the needs of our household, our family and others we know. I pray too in the ‘secret place’ of solitude, and recently an odd thing happened: my prayer became mostly silent. This was not sudden, it’s evolved over some years.  Gradually I found myself less and less sure how to pray in any specific circumstance.  How do I know what is actually best?  Life teaches you that the thing you long for can turn out to be hollow, and the thing you fear brings more life than seems possible. Who am I to tell God what he ought to do? – which I have certainly spent a fair amount of time doing in the past. Added to that, I became absorbed in two aspects of the Divine which seem overlooked.  Firstly God’s invisibility: it’s patently obvious, and yet scarcely acknowledged. Secondly God’s silence. This is more difficult to concede, and I suspect we suppress the truth. In one sense the voice of God is abundant: copious beauty engulfs the observant, and I have said at times that a person only needs to be still to discover the voice of God. But in another sense God seems utterly removed; silent, absent, and unconcerned with the trivial matters of human urbanity. I don’t think this statement is true, but it seems true.

This is where this essay ends, and where it also becomes a little mystifying. My silent prayer in the presence of God’s silence is the avenue of such grace that I find myself joy-filled in the midst of life’s trials; and abundantly content with things I do not understand.



As you know, I’d love to share your experience…