My Favourite Wife and I will celebrate 34 years together later this week. We are presently on a Grand-Tour of Grand-Children, some of whom we have not seen for almost three years. Last night we met our youngest granddaughter for only the second time, a gorgeous blonde toddler who – achingly – does not recognise me at all! Happily we have four days with them and affection will surely grow.
At fourteen days this trip is the longest we have ever taken together. When our Little One had been settled in her own home for just ten days (a month ago already!) it was the longest time my Dearest had ever spent together on our own. We were married with three children, all of whom accompanied us down the aisle, and so from the very beginning our home was wonderfully full. But here we are, suddenly, just Darby and Joan.
Defining moments in the course of life are infrequent, by and large, and habitually traumatic no matter if they are moments of joy or of sorrow. What I didn’t see as a young man, and see a little more clearly now, is how beautiful it is to be reborn. The cycle of beginning and end is universal: almost everything we see in our wide, wide world bearing witness to the arc of life and death. But while the long game of our life is being played out other seasons come and go. Many and varied things begin, and then they end, sooner or later. Some big, some small; some joyous, some dark. This particular rebirth is a big one for us, perhaps the biggest yet, and it is fearful and bright.
Martin Luther wrote,
“Grace is the experience of being delivered from experience.”
I’m not entirely sure what that means, although I enjoy wondering. The word ‘delivered’ is intriguing: we use it to describe birth, not as the delivery a postman might make but a delivery through and from the trial of labour. I think that ‘grace’ is the gift of a new beginning. Life, or God, occasionally resets. Suddenly everything is different and the experience of the past, good, bad, or indifferent, concludes. Everything is new and we inhale the grace of re-creation.
Whatever has gone before has gone; it cannot be altered or retrieved. What comes now is new, and, if we can just see it, full of grace. If only we can stop long enough to see and welcome the new day, then grace abounds.
My favourite wife and I often commented, through all the years, at the profound difference the absence of one child made to our home. It might be a sleepover, or someone away on a school trip; and just one missing from our table of eight made the house eerily quiet, and put us all in a somber mood.
With the departure of our Little One (who turns 22 this very week) our home feels too quiet. Tomb like. A sequestered, echoing cloister in which my Favourite Wife and I wander noiselessly, passing in the shadows. My readers might be tiring of this self-indulgent topic, but come with me, one more time.
A chapter of life has very clearly ended, and beyond that loss lies something new, something large. Raising a child with Down syndrome takes quiet a bit of time and energy; and suddenly much of that time is ours again. But more than time, there is space. Measurable space in a vacated bedroom, an empty place at table, a missing swing set, an absence of washing on the bathroom floor. There is space in the air too: the house sounds different. Just a four weeks ago whichever living space Favourite Wife and I were not using was claimed as a dance and rehearsal studio for energetic singing and boisterous conversation with any number of imaginary guests. (I entered this studio without permission one night recently, and was furiously apprehended by our perspiring, noisy dance student: “You know not to disturb me when I am rehearsing!”). With quietness comes an awareness of space in several dimensions. Space to work, thoughts to ponder, music to play, things to create, friendships to revisit.
Most importantly there is inner space. Heart-space, soul-room; something precious and hard to name. How do we inhabit such space when the invitation arrives? There is a realm of hopeful, contented peace which is so close to us that it requires only our nod of ascent, or a deep breath, to enter it. But will we? Do we? In our world of haste and material concerns empty spaces are quickly filled. I reckon I could plug up the newly opened gaps in my life very satisfactorily in just a few weeks; but I am holding out.
At about 10pm each night, when our bed time rituals began, I miss her terribly. Even though this time of night was sometimes terrible! There is such pain in this loneliness, but at the very same moment I am called inward … or is it outward, or upward? Despite myself I want the emptiness.
You may know that it’s coming; you may tell yourself that you know that it’s coming; you may tell others around you that you know that it’s coming; and yet it will always comes to you as a stranger. Unrecognisable … vaguely familiar … oh yes! It is grief.
Iv’e missed our Little One most often at night since she moved into her own home. We shared many small rituals throughout our days, as she has a great delight in repetition of the routine. At about 9 pm we like to drink black coffee together, and so I find our two small, stainless steel cups and saucers on the shelf. Here they are! Two, but I only need one tonight. Our evening routines were a finely tuned pathway toward sleep – something with which Little One has had a complex relationship since birth. A relentlessly restless sleeper; sharing the bed with her required desperate endurance. We often found her sitting bolt upright in the corner of the cot, sound asleep. On a memorable night she climbed out of her cot, aged only two-ish, and found me writing an essay in my study. That was the end of my years as a student. Throughout her life she has needed to be put to bed, and only in recent years have we been able to leave her room before she was actually sound asleep or she would simply follow us back out. In her adult life I have generally been able to get her in bed by 11 pm, and I almost always stay up another hour, just till I’m sure she is asleep. Not to do so risks being awoken at 1 or 2 am to a house full of lights, music, talk, dance even. Not to mention sounds of industry emanating from the kitchen.
So, here it is nearing midnight once again as it has each night since Little One left home a fortnight ago; but I have no responsibility, no charge to care for. I’m awake out of long habit, but it’s a weary and lonely wakefulness without purpose. Bedtime has been my favourite job, and certainly my joy, for more than thirty years. Throughout all the years there has always been a child who needed me to put them to bed! But, no longer.
Perhaps it’s the unique nature of today, Fathers Day, that makes my melancholy tale so raw. Or perhaps it is that the life of a parent is the deepest, fullest, most precious, most wonderful path we ever tread.
The leaves are falling, falling as from far, As if far gardens in the skies were dying; They fall, and never seem to be denying.
And in the night the earth, a heavy ball, Into a starless solitude must fall. We all are falling.
My own hand no less Than all things else; behold, it is in all. Yet there is One who, utter gentleness, Holds all this falling in His hands to bless. – Rainer Maria Rilke.
This was Little One’s response to my Favourite Wife’s assurance that she could come home whenever she felt like it and her room would still be there for her. They were sitting together, a little nervous both, on a visit to look at the home that will very soon be hers. Whether it’s for her sake or for ours I’m not sure, but it’s been awfully important to us that she knows she can come home, that we are here when she needs us, that when Independent Living gets too hard we will be right here, just like always, waiting to embrace her!
“Mum, It will Never Happen!”
In just a few short hours Little One will leave our home and fulfil her great longing to live independently. But “Little One” ceased to be her monika long ago. In these pages she became Teen Girl almost a decade ago, and is now aged 21. But tonight, especially, I can’t call her anything else.
My Favourite Wife and I have had children in our home for 33 years now, and Little One is the last to leave. I have adored a home full of children. Little One has Down syndrome, and is in so many ways just a little child still. Tonight I was able to forestall a potentially dreadful argument with an impromptu sing and dance routine with a walking stick, Fred Astaire style. With an immediate gale of laughter she jumped up out of her funk and showed me how it’s really done. She is a born dancer with an astonishing sense of rhythm and and endless supply of “moves”. A child still. The conflict forgotten she thanked me earnestly for dancing with her, and willingly went to bed. She still needs to be put to bed; just about every single night.
Once a month Little One might take herself off to bed alone, but on every other night we coax her under the covers with a polished routine that includes a 10pm automatic shutdown of her screens, followed by an immediate request for more time, which I grant in small increments. Warm milk is promised, and delivered. Then Little One insists that I tick off numerous daily tasks across a page, producing a growing tally that turns into a deposit of a few dollars into her savings project at weeks end. It seems to me a little inappropriate for me to be rewarding young adult for picking up their PJs (or not!), but she absolutely insists – and it’s a fixed part of the routine. For months now she has scored a zero on every single day, bar none, in the column for tidying up her floor. I asked her a while ago if she was, in fact, ever going to tidy up.
“No”, she said.
“Because it’s not my room”.
This gives way to our Wordless Hug. Words are a problem for Little One, there are too many of them in the world, and utterly too many issuing from her wise and devoted parents. The wordless hug is our invention, and it is wonderful. I love it at least as much as she does, and sometimes it is long and deep. The next stage is not approved equally by all parents in our home, because it involves tickling. My own father was exceptionally gifted in the art of rousing sleepy grandchildren with a good tickling, and demonstrated his talent at any opportunity. We just cant help it, one moment it’s a Wordless Hug and the next I can feel a sneaky finger heading under my arm. It’s awfully funny, and thankfully doesn’t usually prevent the next and final stage of the bed-time routing: pulling up the blankets. If all this seems like a bit of work, it is; but it’s a whole lot easier than having to lie next to her and read or make up imaginary stories until she actually fell asleep after an hour or more. This was bedtime until she finished school, just a few years ago. At last I close her door, and then I wait for her closing conversation with imaginary friends to wind down over the next 10, or 20, or 30 minutes. Or an hour. Or more….. Sometimes I go back in and ask her to say goodnight to all these vibrantly real and present characters, but that rarely works.
It’s 12.30am right now, and I’m aware that her chatter has finally stopped. I’m just down the hall, as usual, waiting for the blessed silence which I cherish. There is such rewarding peace in a silent house, stirred only by the gentle sounds of sleep. This is the time for thought, and prayer, and silence within.
Tomorrow with be a day of high adventure as we depart in a convoy of furniture and endless shopping bags full of I know not what!
Tomorrow night, with just us two … well, that’s a different thing altogether, and I won’t break tonight’s silence to give it shape just yet.
City folk catch busses when they want to, Country folk catch busses because they have to. Most of my travelling companions on the town bus are there because they don’t drive, for one reason or another. It’s not that bussing is a bad way to get around, but in a town where everything is ten minutes away by car, you only spend an hour on a bus if there’s no alternative. Busses in the city are transport for the general public. Country busses are designated for the diagnosed, carriages for the categorised, rides for the restricted. If you’re on a country bus, there’s a reason you are there, and it’s rarely as simple as your destination. This is good and bad. Bad because there are some decidedly odd people onboard with peculiar backgrounds and stories; and good because there are some decidedly odd people onboard with peculiar backgrounds and stories.
Let me introduce you to someone who inspires me.
Stan is a fellow wheelchair user, a double amputee who rides a green, somewhat ancient power chair. He is of another generation, a quiet and courteous man who holds his own council and moves with grace at a speed of his own choosing. The truely remarkable thing about Stan is that he is also blind. When Stan boards the bus he does so with the chair controller in one hand, and a white cane in the other: a remarkable feat. I recall how nervous I was when I first tackled the daunting ramp on a public bus: building enough speed to climb the ramp but not so much that you miss the sharp right hand turn and crash into the driver’s door instead. Then there’s a U-turn to perform, sometimes a three pointer, before one can park in the designated wheelchair space. Not to mention letting the driver know where you are heading, tapping your Opal Card or paying your fair. Here’s a thing: In the country you can only pay the driver with cash. Cash! It’s tricky work. And I recall how nervous I am still when its raining and my wheels slip and spin and my umbrella gets stuck and I feel every set of eyes on the bus willing me to just-get-it-done! so we can all get out of here. Stan juggles all this and so much more, and without a hint of complaint or frustration; not ever.
Stan inspires me still, even though its now several years since he graced our busses and I learned recently that he had died. I ought not to have written about him in the present tense, but I couldn’t do otherwise. He was a person with an abiding sense of contentment and presence.
There are people we know well, some we know about, and others we know of; and then there are people we barely know and yet we knowthem. We know who and what they are, somehow glimpsing the soul that shines in the moments of our meeting, however brief. My first thought was that these people are few and far between, but that’s not right. I think that there are a great many people of grace, people formed by grace, but we are rarely quiet enough or slow enough to notice them. So, look up from your phone (blight of the modern pilgrim and passenger), and see.
The best thing I read this week was a poem by Lithuanian Poet, Cseslaw Milosz. I first came across it a few weeks ago in Parker Palmer’s book, On the Brink of Everything, and my thoughts keep returning to it.
It’s a poem for later life (not that I am remotely near later life myself, or would ever suggest that you are, dear reader….). So let’s agree its a poem for middle life:
As a young man I felt that native indestructibility that makes life so much fun. With an exaggerated sense of permanence came the the idea that I was somehow important. I mattered, in some unique way, to the world. That’s not quite as pretentious or as foolhardy as it immediately sounds because we do contribute to the world, each in our own way, so we should be kind to our younger, naive selves.
Having now commenced my seventh decade I have a clearer view of my 1:7,960,000,000 role in humanity. And those are only the ones living now. As Milosz says, I am only one thing among many.
Perhaps the trees around our home, and the birds in the trees, might call me friend. I am not so different from them: made of much the same stuff, taking my place in creation in much the same way. Do I know what purpose I serve in it all? Do any of us, really? Must we know?
Enough to live well today, saved from the burden of significance; and, God willing, tomorrow.
(The website that hosts Rejoice! has changed just about everything, and I’m quite lost! So if it looks a bit crook that’s why. Perhaps in my 7th decade I can learn a new trick, perhaps not).
I learned recently that one of my oldest friends has passed from our world.
In my childhood the bus that did a lap of our suburb and took us to primary school was known as “The Chugabomb”, and even by the vintage standards of the late 1960’s it was ancient, and slow. The Chugabomb predated flashing indicator lights, it even predated brake lights! Instead the driver operated a mechanical hand which could point it’s fingers skyward to show that the bus was slowing to a stop (as against just slowing, which was it’s habitual condition), or the fingers could point to the right to indicate an imminent right turn. Left turns were benign affairs in the olden days that offended no one and required no warning. The hand’s brass operating mechanism was intricately made, worn bright from endless use, and I can still hear the clatter it made as it rattled in and out, deftly flicking it’s fingers one way or the other.
On The Chugabomb there was often a boy a few years older than I, who was as different to me as the bus was to other busses. Stephen – although his name was not known to me for several more years – was a very short fellow with an unusual face, a broad smile, and an even more unusual voice. Stephen was disabled, although to my lasting shame there were other words that schoolboys chose for him. During my childhood residential homes for children with disabilities were still entirely normal, and so there were far fewer boys like Stephen out and about. We (why do I say we? Do I need supporters for what I will say next?) we were afraid of Stephen and his startling voice. The smile which I would later recognise as warm and bright was to us (us! I’m still claiming popular opinion here, without any basis whatever) just part of his rather different face. In our curiosity and fear we stared. Well, I know I did.
Years later when I became an active part of our Church’s youth I began to meet Stephen at all sorts of Christian events. Wherever I went, it seemed, so did he. By then I had begun to grow into my adult height of 6’7”, and Stephen was not much more than half that. He would stand frighteningly close to me, poke me in the stomach with a short finger and ask, “And how has it been going with you?” His words always started at a very high pitch, and cascaded downwards with each poke of his stubby finger. I can hear it now as clearly as I remember the Chugabomb’s clattering hand.
When I left home for University we began to correspond. For the next 40 years and more we exchanged a letter every few weeks, and through all those years there has usually been a letter from Stephen lying open on my desk, waiting for my reply. My letters were rather longer than Stephen’s. I shared the evolving story of my working life, and later on my growing family in our various homes. In contrast Stephen’s letters were a model of brevity, indeed they were virtually identical. Every letter I have ever received has been on a lined page, torn in half horizontally, and in a child like script they read:
Small variations on this theme occurred: a different job at work, or a different book in the Bible. But that was all, every one of several hundred letters was much the same. After many years I wrote to his mother at his address; it was quite speculative: not actually knowing if he had family, only that I had been writing to him at one address for so many years. Her reply was astonishing; she told me that Stephen had a deep and abiding interest in the history of Sydney, and had read every book on the subject that the Public Library could provide; she also said that he had a wide knowledge of the classical cannon of music. I have never heard any mention of these things from Stephen himself.
On one very particular day, about thirty years into our correspondence, I received a dramatically different letter from Stephen; one with perfect pitch and astonishing spiritual vision. It ran like this:
Dear Rod Allen,
How has it been going with you?
From my window where I live I can see the Opera House, and Luna Park, and the Sydney Harbour Bridge.
Yours in Christ
I opened Stephen’s signal letter on May 20th, 2009; the day I returned from an appointment with a Neurologist who told me that my slowing walk was probably caused by Motor Neurone Disease. That’s a challenging day. While the doctor had offered his diagnosis, Stephen’s words could not have been more starkly different, or more prescient and true. Just as he had written, I was suddenly staring at a very different view, but one that would prove to be, over time, so very good. It was pure, life-giving prophecy. There were so many thoughts and emotions on that day, but it is Stephen’s written words that I remember most clearly. I came to understand them more as the months past, but on that dark day they were a ray of immediate hope.
Stephen broke with tradition last year and rang me up, twice. The high pitched, falling cadence: “And how has it been going with you?” was immediately recognisable after so many years. Then a few months ago I found myself in Sydney with a little time to spare, and so I sought out my oldest friend. I knew his voice was unchanged, but how would we look to each other after 40 years? But I was too late, my old friend had gone. I was not entirely surprised: two of my letters had arrived back, “Return to Sender”. Deep inside I had a sense which I dared not give words to of where my search for Stephen would end. The first person I spoke with at Stephen’s aged care home was new, and had never met Stephen. But she found someone who knew him, and I was taken to meet Stephen’s mother, now in her late 90s. Sadly she was no longer very present, but I was glad to have met her at last.
I went from there on a long uphill push, in the rain, to find Stephen’s beloved church, St. Thomas in North Sydney. There I found one of the pastors who had conducted the funeral service for Stephen some months earlier, and who knew him well. It was a delight to talk with good humour and in depth about my dear friend.
Stephen, perhaps my oldest friend, was a friend like no other. He said less to me, and yet so much more, than any one else. Beyond Stephen’s two talking points, and a letter from his mother, I knew nothing of the details of his life; and yet in one brief, handwritten note on a torn piece of lined paper this unheralded prophet somehow perceived and described my life. The world is full of wonder.
The ten foot circular wading pool in our yard happens to be one of the purest and grandest places in the world. Standing (infrequently) I measure 6’7”. Floating, starfish style, I can very nearly touch the pool wall at all four points of a ten foot compass. A curious image, assuredly, but on a clear day situated thus I can see the vast blue canopy of the sky fringed by the greenery of our garden; I can glimpse the glorious bay windows in our home; and I can see a ring of bushland rising dramatically on the hill we are nestled into. It’s superbly rich; simplicity so delightful that I sometimes laugh out loud in surprise.
Easter Sunday, 2020, is just such a brilliant blue day, and although summer is long gone Teen Girl and I will be taking our daily dip soon. It is from this buoyant posture that I find myself pondering the delights of “self-isolation” in Paradise, while humanity around the globe is in travail. It confounds me that I am enjoying a secluded life of peaceful occupation even while vultures circle the hospital in Guayaquil, Ecuador, hungrily drawn to an unknown number of CoronaVirus fatalities within. It has ever been so, but the harsh contradictions of life defy my understanding.
As 2020 dawned I was apprehensive, no, I was despaired. The international press was full of scientific data proving that the earth’s ice caps are melting at a greater speed than the most dangerous modelling had predicted. Climate change was being ignored by governments around the world, with few as wilfully dismissive as our own. I dreaded to think of the world that my children and grandchildren will inherit. And yet on that very day, New Year’s Day, a grandchild was born to us unexpectedly, weeks before she was due. Light magnified within me as the birth of this tiny child brought us to our knees in wonder. “Unto us a child is born” says the scripture; and with complete disregard for the proper application of that verse I bathed in the glory of hope; a God-given joy.
But I wonder if you share with me, three months later, a shy hope still? There are prophets everywhere: ordinary people are peering forward through today’s cloud of fear to catch a glimpse of a new world. My own self-isolation is becoming a rebirth; I have a deepening awareness of the opportunity for change. More than that, a calling toward change. I know that in some western countries (incredibly, our own included) there are queues at the door of gun shops; but what I hear in the ordinary voices around me, on the phone, on the news, are expressions of community.
Could it be that personally, communally, nationally ….. even globally ….. rebirth is possible?
In his book Out of Solitude, Henri Nouwen writes:
“But in solitude, our heart can slowly take off its many protective devices, and can grow so wide and deep that nothing human is strange to it. Then we can become contrite, crushed, and broken, not just by our own sins and failings, but also by the pain of our fellow human beings. Then we can give birth to a new awareness reaching far beyond the boundaries of our human efforts. And then we who, in our fearful narrow-mindedness, were afraid that we would not have enough food for ourselves (or enough toilet paper?), will have to smile.”
On Easter Sunday, 2020, my heart is drawn toward hope, toward rebirth.
My thanks to two dear friends, Robin and Philip, who this week reminded me to write.
Do drop me a line,
(but be warned: I am both a slow reader and slow writer).
The week ahead holds great hope: three drawn out dramas could possibly be resolved.(Number 3 is the best, so read on….)
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)”.
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…
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 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!
“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.
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 ifthe 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.
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.