One month ago today, my husband fell. It was Good Friday, and thus began his descent into the final weeks of his mortal existence. He entered the ER as a man still fighting, angry at fate, determined to get out of there as soon as he could. Sadly, that vital man never left the hospital.
On his darkest day, spring had extended a tentative hand. I’d expected to take him for a rambling drive along the shore, as he so loved to do. Instead, an ambulance bore him away. My drives will be solo now. He will be my unseen passenger, gazing through the windows as the road unfolds and rolls behind me. So much changes in a month!
Today, May 3rd, is one of those mornings when I can truly say, “God’s in His Heaven; all’s right with the world.” Of course, that applies only to my small corner of the world. In Nepal, nothing is right. In Baltimore, the aftermath of devastation will take time to clean up and heal. In many places, life is a struggle and the odds of survival are far lower than our own. We would be foolish to imagine ourselves the center of any universe, great or little.
Still, all I can do is celebrate the sunshine here. Where is Heaven, anyway? Is it a location? A spiritual state? An energy field? Another dimension? If God – either gender – is there, can He or She also be here? Do the two realms overlap? Will those of us in our material bodies ever connect with those who have moved to another form?
Is David wherever Heaven might be located? I’m assuming he’s in a place of rest, grace and healing. He deserves to be. He’d often claimed to be an atheist but he quite probably wasn’t. Agnostic, maybe, unable to know for sure and always up for a lively argument. But not a man in denial: his massive library testifies to his exploration of the vast and distant frontiers of science, history, philosophy, art, religion – everything that stands as testament to humanity’s finer (and lesser) achievements. Everything that makes us look up in awe and wonder. He has his answers now.
At the last, I choose to believe he accepted the existence of another, incomprehensible dwelling-place and of the Power that invited him to be there. He was alert and aware when matters of the soul were shared with him. His dear friend, John Symonds, sensed the strength of his acceptance. David had no voice, no movement, nothing but his eyes and ears. He had been reduced to vision and sound – the basics, his mind no longer concerned with food or drink or any other physical act. So he saw and he heard – watched and listened. That was enough, I think.
Who else might have been present in that room? His father, whom he never knew? His mother, with whom he needed to reconcile? His old friends long gone? The shouting boys of his childhood, the companions of his middle years? Whose faces were in the group assembled to lead him home?
In the end, he chose to leave for that unknown realm and departed in peace. Today as I work in the gardens, David will be in my thoughts. He so enjoyed his zero gravity chair, where he’d read and listen to the river. Cash was inevitably curled in the grass beside him. Gollum – who adored David and perhaps is with him again – slept in his little grave not far away. Nothing and no one is ever truly lost. This morning, I’ll walk across this bit of land and tend my flowers. I won’t be alone. The knitting of the heart’s bones will be slow. But they will knit in time.
“What an adventure my life has been!” – Napoleon Bonaparte
One of the crucial questions often posed on ALS sites reads like this: “What would you do while you still could?”
I often think about this. What, indeed? We’re all gifted with time and capability – until suddenly, the gift is withdrawn. A moment missed, an event planned and never carried out, an invitation refused. These are gifts not unwrapped. But there’s no refund for returning them. They’re just gone.
On the day my husband fell, we were anticipating a lovely drive in the early-spring sunshine. He has always enjoyed going to Sandford, seeing which boats were in (or out), meandering along Main Shore Road, parking on Port Maitland wharf across from the breakwater. We’d stop at Edna’s Bakery for tarts and fresh-sliced bread. As his disease advanced, he knew that most of it would be uneaten, except by me, but the scents were delirious! When a man can’t swallow food, his nose must provide a substitute experience. Nothing beats the olfactory “high” of bread straight from the oven.
That drive will never be taken now. A stumble – and everything changes. We’ve been well aware this was coming. ALS destroys mobility, one way or another. Falls, limb dysfunction and atrophy, or both combined. The neurons die and their tiny sparks fade. Anyone with a neurodegenerative disease will recognize this forward lurch toward stillness. For some, it happens quickly. For others, it is a slower part of the process. But inevitably, the critical point arrives.
So the gifts handed to us must be taken out of their boxes as soon as they’re received; appreciated and enjoyed. As the old Nike slogan goes, “Just do it!” Take an extra jaunt into unfamiliar territory. Spend a few nights on the road somewhere. Be open to whatever opportunities arise. Seek out friends of long standing, renew acquaintances, laugh together. Remember those who have always been there, through the darkness and the dawn, and cherish their company. Give yourself and your days to the people who stand to lose most from your absence. Allow them to keep pace with your journey, because you can’t go back again.
David was blessed to discover a companion named Gary from his long-ago childhood in the south of England. He has kept in touch with this man for a few years now. Of all our friends, only a few can know us as we were from the beginning. We scatter like wayward dandelion fluff on the wind. We might end our days without ever seeing or speaking with a single person who climbed trees with us, ran beside us on the beaches of our youth, went to camps and on school outings and off to college together. Swapped stories and traded the exciting secrets of adolescence. It is no surprise that for many older folks, recent memory erodes while recollections from past decades spring clearly to mind. They’ve worn the deepest grooves in our psyches. We speak of the ’40s or ’60s, of classic cars that were new when we first saw them, of old warriors and movie stars, politicians and adventurers – most of them dust now. Most of them unremembered by the young.
What would you do? Take a course in a subject that’s always interested you. Study a new language. Sign up for a cruise or hike to some unknown place. Read more. Learn a skill – garden, make wine, create art. Write or sing or skip down the country lanes of the heart. So what if you skip slowly? That merry girl or lively boy inside your head is going to enjoy it!
When you’re lying in a hospital bed or confined to a wheelchair, surrounded by machinery that gasps and rattles and whooshes as it sustains you, make sure you regret nothing. Do it while you still can! Celebrate wherever you are right now. Unwrap every gift – including the weirdest ones – and toss away the boxes.
Even if something breaks into a thousand fragments, the sunshine will turn those pieces to a glitter on the grass, the jewels of your own history. The mosaic unique to you, which nobody else can assemble.
My candle burns at both ends;
It will not last the night;
But ah, my foes, and oh, my friends—
It gives a lovely light!
– Edna St. Vincent Millay
The holiday season is well underway now – concerts, gatherings, staff parties at many establishments. Excited children, dancing lights, Santa at the local mall. Stores with groaning shelves, carolers in red velvet, cheerful music wafting through all available airspace. Trees glowing in corners; menorahs gleaming on tables or in windows.
Indeed, a festive and celebratory month.
Except when it’s not. Some folks view this time of year with dread and even despair. They may be battling illness, whether or not it is obvious to the casual observer. They may be reeling from the impact of a recent loss within their circle of loved ones. They may be financially pushed to that cold stone wall which offers no doorway out. They might be struggling to sustain a relationship, or mourning a breakup they may not have wanted. Every balm for their wounds will turn to salt, and the salt to tears.
They could be estranged from family members, unemployed and unable to find work, recently-moved into an unfamiliar place. There might not even be a home they can claim, other than a doorstep, a bench, a temporary shelter. This is the season when the homeless feel the cold. This is the season when fires – meant for heating houses – end up destroying those houses instead. And this is the season when children go without the gifts their classmates enjoy, because these gifts cannot be provided.
And so the people who stand outside endless, glittering windows must confront the joyous displays, the songs, the endless “Ho Ho Ho” messages, with a certain bitterness at the brutality of fate. These are people within whom no candles are lighted. Broken people, burdened people – voiceless, isolated. People with little hope of relief and little expectation of the simple kindnesses many of us take for granted. Afraid to ask anyone for support; reluctant to seek help for themselves, although they may do it for their children. Too proud to come forward and search for a loving face in the crowd. Terrified of being judged, and knowing full well that, indeed, judgment is being passed upon them.
No shared Facebook meme will make a difference to those who most need comfort. No “post on your wall for an hour” will help them. No “I say Merry Christmas” preaching will breach their sadness. Many won’t even have computer access. Others will be craving a personal communication that never comes. Some might even retreat from the internet – or at least from social media – until this whole glitzy, glorious, glaring time is over and the bells have rung its death. Then they’ll return, quietly and without explanation. For them, the Christmas weeks are their signal to disappear.
Joy to the World … but the world can shrink to a bubble for some. It can blow away, carrying with it all the rainbow swirls that shine so brightly. Then the night becomes silent, indeed.
People speak of the “dark night of the soul”. It is real. It is overwhelming. You wake up to it and wonder where the door is. Every step is barefoot on glass that has no shine. The cup sits at your left hand, glimmering with its burden, and you beg for it to be taken away. But of course, it isn’t. You have filled it yourself. Every sin you have ever committed – even those you’ve forgotten – swirls in its dregs. Every regret, every sorrow, every wrong done to others – they’re all part of that elixir. You stare at it, terrified to drink. But you will. Inevitably, you will.
This is the time for family – if you have one – to gather and shut the drapes against a darkfall that many will never endure. This is the time for friends to toot their horns as they pass, their headlights leading your pathway out. They have, after all, thought to acknowledge you, and thoughts are another kind of beam through the dusk. But on this night, you’re lost to family, though they may be unaware of it. Friends pass and follow their own destinies. They don’t see that overturned sky over your head. And they couldn’t raise it, should they want to try. You must protect them from that knowledge, and from that attempt.
So you draw the blankness around yourself like a robe. You turn off your porch lantern and cancel the warmth falling on your yard, where the grass is frozen. No sleepy birds murmur in this winter of your discontent. In the old days, wagons ringed a comforting fire. Wolves and night terrors dared not intrude. But there are no wagons now. No fire but a candle clumsily lighted. And the wolves tiptoe closer, baring the teeth of those who hate you. Sadly, they far outnumber those who love, because after all, this is your darkness. You have shaped it through your own pain.
Because no one is entirely without fault, and you understand this, you’ve muddled along as best you can manage. No one believes you won’t keep on doing it. You err because that’s the human thing. You get back to the road and survive a few more years. Your twist your ankle or shatter your heart as you fall off the margin of that road and of those years. Then you either limp forever after, or work out the injury and build yourself stronger for awhile.
And in the irony of ironies, chances are you will be noted most for the brilliance of your smile. You’ve learned to hide everything behind it. You’ve cultivated it like a flower that blooms best after sunset. And when people say, “You have the most beautiful smile,” you feel reassured. You have hidden well the shadow that would turn your face to a mask of grief.
But the dark night still comes. It closes down around you, the way cooling stones trap water. Perhaps this is how crystals feel, locked in their geodes, unable to shine for anyone until the rock is broken. The risk involves smashing the best and most beautiful of those gems. Escape entails a cost. Something inevitably cracks.
Ask not for whom the bell tolls, indeed. You need not raise that particular question. The ringing drowns out all other music now. It goes on and on; it shakes the windows. You block your ears and it swells inside without the slightest softening.
But like the winecup, poured at your behest, you can identify where this tolling started. There’s no need to ask. You’ve hung that damned bell in your own soul, after all. Now you’ve hauled on the ropes, it won’t stop. It peals into that not-so-good night where no one goes gentle, and most don’t go at all. Only you, and only now.
You walk into the darkness on a carillon trail, unspooling silence behind you.
Today, we remember the lost, the fallen, who often lie in waters or fields unknown except to God, without recorded names – without anyone now alive who can recall their faces.
I think of Ezekiel’s vision, the Valley of Dry Bones, when dusty skeletons are clothed in flesh and rise, a vast army, to stand before us. We are about to clothe in flesh – for an hour’s communion – these honoured dead. They were the children of Israel in Ezekiel’s dream but now, they are the children of all humanity, friend or foe, resting together. For this one day, our own are standing again; we can see them on the periphery of the crowd, gathered among trees, walking down cemetery rows. They lean fold-armed beside their old comrades and circle the poppied cenotaphs; they touch the shoulders of young cadets who stand watch with heads bowed. They pass as the wind, and a teenager in immaculate uniform is moved to wonder at this; at the feeling that someone has gently touched her face in greeting. The old man beside her has no curiosity. He already knows what and who it was.
These great armies and squadrons and fleets marched, soared or sailed forth with hope and resolution, bound for their own destinies, praying they would not fail. They must have been daunted by the enormity of this task, frightened by their own frailty, unable to dwell on that fear lest they give in to it. They would have been anxious to return home at the end of it all. And while many did survive, numberless millions did not. No one endures any conflict untouched; if the body remains unmarked, the mind carries its own gashes. The living, too, have experienced a form of death. It is heavy on them; it is in them, in their eyes and hands and voices. They have given up something that most young people take for granted: some call it innocence. I believe it is, in part, the idea that there can be permanent victory or defeat with clear boundaries between them.
But in any war, although I’ve shared only in my father’s reflections rather than the actual experience, I suspect that clarity might be difficult to grasp. Who, really, is the enemy? Is it the kid who was driven to fight because his community or national leaders demanded it? The commander who knows that no matter what he might do to protect them, his men will be placed at dreadful risk and that many will fall? The artist sketching a propaganda poster in some stone building far removed from the guns? The father desperate to protect his family from threat of destruction? The German submariner who enters a Derry pub and finds himself surrounded by sailors from an opposing navy, men who offer him a foaming pint and clear a place at the bar?
We can easily recognize the brutal and corrupt leadership whose motives have forced such horrors on everyone else. They are almost unreachable and they destroy anyone who dares to confront their authority. But between these war-dealers and their adversaries, there strides that vast army of clothed bones – youth whose parents loved them, hugged them, cried when they left home. They march for the side of evil, or for the side of right and truth. We can tell the difference, of course. Or so we believe. But the lines blur over time. Monsters are destroyed, warring parties reconcile, treaties are established and the world lurches forward. The dead sleep well, even among those who have killed them. They cannot differentiate. Only we can do that.
Still, every combatant understands the price of victory.They have all paid their tokens in advance, but the coinage weighs more for some than for others. And now they come to us, full of love for this nation they have so proudly served, and asking that we remember – not for themselves, but for us. That we acknowledge the apathy, the callousness, the depths of both greed and hatred that bring devastation to humankind. That we choose to take another road and give everything we own to keep it secure.
Surely, we can promise them this. While war brings its uncertainties, the protection of peace is a choice that few can argue. We must promise them our best and finest efforts, in memory of theirs.
It is puzzling to watch how, in various social media (and in a wider sense as well), some Christians reach out to other Christians and interact with them as a closed circle, yet fail to extend their friendship quite so generously with those who might either be struggling with their faith, or simply not Christian at all. I suppose it’s natural to do this. Like seeks like. But when it becomes self-focused, then it also becomes less than inclusive. At least, that has been my personal observation just lately.
I wonder if this is what Jesus would have intended. The Christian Church is shrinking in membership. Is this sense of exclusivity a part of the reason? A retreat behind the barricades of faith, so to speak? A feeling that “our church” is better than “your church” because WE do it right and YOU don’t? I have heard this sentiment explicitly expressed from the pulpit. It disturbed me so much (coupled with the anti-scientific mindset I encountered) that I stopped attending services anywhere. My gardens are my sacred places these days. God – genderless and remote but still present – glimmers above my head and dances in the leaf shadows. I suspect I have become something of an animist. I detect that holy but unfathomable presence in almost everything, from the stones and water to the air and light. It doesn’t wear the skin of either a man or a woman. My fundamental Christian acquaintances will no doubt be concerned for my soul and consider me damned for eternity. I have done many things worthy of damnation, after all. But is this one of them?
I’ve belonged to a “traditional” church but now live at some distance from it and am no longer a participant – although I hasten to note that these are fine people with beautiful hearts. So it’s not their fault; I’m just standing outside the circle. My home congregation from childhood is in another region entirely. I have been exploring the Jewish roots of my father’s Levy lineage, with considerable and increased attention. That is the surname I’ve carried from infancy and its history is undeniable.
And then there’s Yeshua, Jesus, the Jew at the foundations of Christianity. He never once claimed to be anything else but Jewish. I think too many Christians have forgotten that over the years. Western society harbours a groundswell of anti-Semitism that I find frightening. The situation in the Middle East has some bearing on this, but it’s not the whole story. There’s this knee-jerk reactionism that gets directed at a much broader spectrum. So I quietly research my name and its ancient antecedents and wonder if we will ever truly be comfortable with our own identities, any of us, regardless of beliefs or cultures or places of residence. I doubt it. Contention is inherent in humanity. We do not play well with others. If we believe otherwise, we are lying to ourselves. No one ought to get too smug about our capacity for committing acts of goodness.
Meanwhile, my family’s home in Yarmouth will become increasingly our “prison” owing to my husband’s physical deterioration, thanks to ALS. Its address is not far from several mainstream churches. People from these congregations know us and many also know what we are dealing with. Yet David has received nary a visitor from any church, except Mormon – and they were total strangers to him until then. He appreciated their attention. Otherwise – nada. Nary a card. Nary a knock on the door. Nothing. He is confronted with mortality and it will be a terrible conclusion to a life bravely lived. His atheism is, I suspect, more along the lines of agnosticism. He has a keen intellect and his mind closes no doors entirely. It doesn’t need to. The religious community closes them for him. We have been the recipients of generosity from many sources but all of them were secular. I do find this curious.
Still … he can hardly hike out to the nearest place of worship these days. And he’s probably not alone. Well, yes, he IS alone in that terrible sense. On his hospital admission forms, he always writes “Anglican”. He was born in England although he deems himself 100% Canadian but that one tie remains. I believe the last time he saw any clergy member one-on-one was in a hospital setting. And for a religion that originally emphasized outreach and conversion, this strikes me as rather sad.
The former Catholic Church in Corberrie, NS – now unused and no longer consecrated.
I took this photo on a recent drive around the area. I have never attended this church, however.