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Looking Back, Standing Still, Thinking Forward

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.

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On Doing

“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

Early One March Saturday

The morning is a pearl. Not a twig moves in its shimmering globe. Not a bird stirs. All is tension between reality and potential – between now and later. Stasis. Welcome respite for some; anxious pause for others. The moment of keenest awareness before all the clocks in the world stutter and continue their endless, Sisyphean rounds.

Hopeful chickadees have arrived now, and a junco, picking at seeds embedded in the frozen crust. My two rats have eaten well, and crafted a maze of tunnels through the drifts. They pop up and disappear like groundhogs. As the rains move in and the snow shrinks, they will lose their winter warren. I wonder if this will disappoint them. So much effort, such complexity – gone at the whim of Nature.

Then again, isn’t that what happens to us as well? Mayan ruins, Roman walls and aqueducts, Sable Island spars drowning in sand … the winds passing indifferently over all this wrack and glory. “Cloud-capp’d towers and gorgeous palaces” dissolving, Prospero’s vision come to pass. But for now, for this hour, the rats build their corridors of ice. They never invade my human domain, for they have no need. I let them be. We live too far in the back country for pestilence to touch them, or me.

A car crunches the frozen ruts on my road. Cash barks to be let in, his urgent business completed. The cardinal enters with crimson flare. He is my Prospero, my Mage of the Snows. Someday, perhaps he will magick me to ancient Egypt or Uluru. Waking time is brief; sleep is long. And always, the pearl rolls away and the revels end.

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Noel? No … Hell!

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.

An Absence of Sun

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.

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Do Unto Others (or not …)

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.

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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. 

“Emotional Predators” of the Elderly

Advancing years – coupled with illness – often make us vulnerable to many challenges. If we have loved ones to help us cope and to offer protection against personal harm, this can be immensely reassuring. Sadly, some seniors – especially if they’re confronting major disabilities and gradually losing their sense of self-control or independence – often fall victim to others who insinuate themselves between the concerned family and the struggling father, mother or grandparent.

Because women tend to outlive men in Westernized nations, this particular situation can entail a gender imbalance. However, both males and females do become targets for the unscrupulous. Sadly, these unethical individuals usually gain the confidence of the victim through an appearance of friendship and good intentions. By the time family members become aware that something is awry, the relationship between predator and prey might be firmly established. It’s then very difficult to convince the elderly person that he or she is being conned.

This is frequently not a matter of mental incompetence but of misplaced trust. As we age, or face various hardships at any stage in our lives, we do need to feel that we’re the focus of someone else’s attention. We need to believe we’re highly valued and that we’ll receive assistance from those who know us best. Usually, in fact, we are important to our loved ones and we do get help as needed. Unfortunately, our adult children might well have jobs and families that take up much of their time. Spouses, too, might be feeling overwhelmed by the demands of caregiving and coping with their own ageing processes. They might not be aware that others are showing excessive and inappropriate interest in their partners.

Granted, elder abuse – and the kinds of scams that often accompany it – can also happen within families. This is a whole different topic. And there are many wonderful souls who visit seniors in nursing homes or at their own residences, assist them with everyday needs and genuinely want to make a positive difference. Heaven knows, we need these merciful angels! But my own concern is with total-to-near-strangers who materialize almost out of nowhere and gain the trust of their victims. Whether their intent is to acquire property, exploit financially or merely to interfere with the individual’s social and personal interactions, the results can be disastrous.

Con artists have no shame and will practise their deception without any qualms. But then there are those other folks who don’t understand the circumstances and honestly think they’re being kind and compassionate. They never stop to consider the impact their attention might be having on others who have been part of that senior’s life for many, many years. These people are, perhaps, more naive than malicious, but in the end they can do dreadful damage. If the person is undergoing medical treatment, usually the next-of-kin are the ones who understand each procedure and help to manage appointments, medications and so on. Most medical authorities want to deal with next-of-kin, such as spouses and/or grown children, or professionals such as nurses and Homecare providers. They’re not going to accept someone with no legal connections as an appropriate source of patient support.

When called to account for their actions, these so-called “friends” will typically protest. “But I was only trying to help.” “He loves going for drives.” “I’m just being a good neighbour.” Or – worst of all – “I don’t see any of YOU looking after her!”

At times, either party may misrepresent his/her marital status or familial ties. He or she might even play the “pity card” rather effectively. “Poor me – my wife is more like my sister now.” “Don’t worry; we’re separated.” “Our marriage has been dead for years.” “It’s OK, she (he) won’t mind as long as we’re just friends.” “He totally ignores me most of the time.” “My children never do anything for me.” And so on. Without actually having known this individual beforehand, the sympathetic listener might well be inclined to believe everything at face value. This can also occur in online relationships where the “details” can be slanted to fit the intention. Indeed, the devil is in those details when that’s the case.

It’s usually not hard to determine the truth. Separated or divorced? Ask to see proof – the papers themselves, or a document scan sent as an email attachment. Neglectful family? Check the Facebook page, if there is one, and see whether or not family members show up on it. Or make discreet inquiries around the community. She (or he) won’t mind? Then why not talk to him or her, make email contact or call and ask? If you’re reluctant to do that, perhaps you ought to question your own motives and then back away. And if there is no documentation of a marriage breakdown, it’s best to run. Fast!

Otherwise, such a “friendship” can quickly alienate a family from a loved one if that person is still living independently and has, in fact, not been estranged from those who care most. This is simply not fair. 

Some opportunists will even claim to be affiliated with a particular religion that sincerely cares for the senior’s soul, even when it doesn’t. They’ll pray with him, visit him regularly, invite him to their church. Flattered, and unaware he’s being used for profit, he will respond with eagerness. Needless to say, there will be some tradeoff: salvation for donations. The relatives often have no idea this is going on. Countless elderly folks have been bilked out of their life savings by charlatans operating in the name of God. A valid and caring church will offer support to its adherents. A fake one will siphon away their money.

For partners and others responsible for the welfare of a vulnerable individual, here are a few warning signs that might indicate a problem:

– the appearance of a new “friend” or “companion” whom the family members don’t know very well, if at all
– the exclusion of family, by the above individual, from activities involving their loved one
– unusual generosity on the part of the senior when it comes to either money or time given to a stranger
– secretiveness and refusal to respond to questions about new or recent relationships
– unavailability for family events, or unexpected refusal to attend them
– increasing suspicion directed at loved ones over their concern for the situation
– hostility and resentment that appear to have little or no cause
– lack of communication through the usual channels (phone, email, texting, Facebook messages or whatever)
– loss of empathy with others who might also be facing hard times; self-absorption
– indifference to consequences, or inability to think ahead
– sudden and inexplicable interest in activities that have never before been important

I am the wife of a seriously ill senior. His disease has no cure and it will ultimately take him from us. Yes, my daughter and I occasionally find ourselves dealing with disruptions by those who don’t have his (or our family’s) best interests at heart. Sometimes there have been innocent approaches and other times, not so much. The trick is to know the difference! I’ve also had connections with other families that were torn apart by the machinations of a predator.

I hope that anyone in similar circumstances will find my reflections relevant. Some readers might even recognize their own stories here. They key is to remain vigilant. We have to speak up! If we don’t, who will?

Stand firm. We’re our loved one’s last and most reliable line of defence.  He or she might not realize this, but we do.

Sonnet for a Not-So-Well-Meaning Stranger

You call yourself his “friend”; he names you thus
as well – and yet, my dear, you have not been
with him these thirty years or more; not seen
his weeping wounds, nor braved the night, to rush
down rainy back roads while he cries in pain.
Have never heard his doctor say “Cancer”;
his specialist sigh “ALS” – his answer:
“Thank you. I’ve lived my span. I can’t complain.”

You, madam, think a casual embrace
is somehow your entitlement to share
one more adventure with this man? His wife,
his daughter, and her little son must face
your interference? You were never there!
Just go away – wreck someone else’s life.

Brenda Levy Tate

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