Noel? No … Hell!

Dec9

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

Nov23

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.

In Remembrance

Nov11

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.

Do Unto Others (or not …)

Sep8

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.

Tripping on the Road: August 20, 2014

Aug21

It’s been a long day. Sometimes, we celebrate even though there’s a darker shadow just below the surface. Birthdays come and go, in their endless parade – until suddenly, we wonder if there will be a next one in that lineup. At least I do. Mortality casts a lengthening shadow, and at this time of year, as the sunset looms ever earlier in the evening, we start to think of the way things wane and wind down. The blades spin slower. Their shadows fall in dark bands across our skin.

But the sky is indelibly blue and the close of the light casts glory across the waters. The Pubnico windmills turn, turn, turn … the gulls on Yarmouth Harbour rise and scatter over its salt mirror. I stitch the path between these two actions with smaller things: opening a pat of butter at a restaurant; helping to put on a pair of shoes (no laces – only velcro now); assisting my husband with getting out of our car and being able to stand. When he falls, I can’t manage to restore him to his feet. Chatting with friends, I am keenly aware that on the other side of the table sits a man who, not so long ago, would have introduced himself, added his own remarks, enjoyed the conversation – but can only smile now, as well as his facial muscles will allow. It’s almost like looking at one of the Greek masks: comedy or tragedy. I’m relieved when comedy wins.

His voice inevitably falters. He tries not to talk much any more, in case someone might misinterpret or, worse, assume he’s “not all there” – drunk, on drugs, senile. Explaining about his disease takes too many words and he doesn’t have enough breath to deliver them without his voice amplifier. A couple months earlier, he could manage three syllables per breath. The amplifier has pushed that number to ten. But he doesn’t always wear it when he’s just out wandering around. So the words drown him.

Still, he gamely tackles his parmesan haddock with mashed potatoes (no more french fries), sips a Diet Coke (his throat seems to respond to the carbonation and he doesn’t choke as much), samples some bread pudding. His feeding tube lurks beneath his shirt. He knows it’s there, of course, but he refuses to relinquish his solid meals just yet. That will come soon enough. On the drive home, he speaks of pain – cramps in his arms, legs, chest. At night, he fumbles with a BiPap breathing mask so a machine can force his lungs to take in air. And he wonders where to buy suspenders to hold his pants up! Weight loss and diminished muscle tone make it tough to keep them in place. Gravity is merciless.

While we’re on this day trip, unknown to us, compassionate folks in Yarmouth are participating in the Ice Bucket Challenge. They shiver and grin through their discomfort, which is duly recorded for posterity. Two thumbs up to them all! ALS gets much-needed attention and those who wish to donate are inspired to do so.

I briefly wonder if any of the PALS (People with ALS) from our area were able to attend this wet and icy event. There aren’t very many – only two or three. It would have been fun to watch the local challenge in person, since we “ALS families” are affected more than anybody else. But this, I think, highlights the ultimate isolation that this disease can bring. When there’s a community fundraiser for, say, breast cancer research, chances are there will be breast cancer survivors or patients applauding or even saying a few words of appreciation, or possibly tossing a ball at a hapless dunk-tank volunteer. Same goes for MS, diabetes, kidney disease or almost any other health-related cause one can name. You’ll usually see a few patients and their families represented among the spectators. With ALS, in a smaller community it might be hard to find anyone who actually has the disease, let alone is able to be there. Thank goodness for videos! They’ve allowed so many of us to share in the experience without struggling to make a physical appearance.

Still, it’s very cool – literally as well as figuratively – that David’s birthday was also the date chosen for the ALS Ice Bucket Challenge in his own town! Perfect timing. Thanks, Mayor Mood.

So ALS is finally “out there”. People are learning what it is, why this battle is so important, how they can help. ALS isn’t just a bunch of letters that need to be explained. And it no longer wears only Lou Gehrig’s face. It wears David’s, and Pete Frates’, and all the others who take this same road trip. These are beautiful, brave faces even when they can’t smile any more.

This, my friends, is the reality behind the ice water and the donations and the long-overdue hype. These are people who have been going about their lives, working, learning, sharing, contributing, hoping and planning. Suddenly it all crashes. At any age, under any circumstances, that terrible diagnosis changes everything. Yet hope remains as a constant, in these bleakest hours. There’s reason to celebrate even on these long days when the sun fades in mid-evening. Maybe not a wild, street-dancing kind of party but at least a whoop of excitement. A “YES”! An awareness that we aren’t in this fight on our own.

Uncovering Lou Gehrig’s Mirror

I never knew how someone dying could say he was the luckiest man in the world.
But now I understand. – Mickey Mantle

You should have scrabbled for it sooner,
hung it before the images first appeared –
maybe to reflect yourself, maybe this room
when snow sifted against a windowscreen.

But summer’s here now, with diamond afternoons,
and star-showers over the hills. Time to look.
The glaze wavers you. Your masked smile inverts.
Not tragedy yet, but the corners loosen.

You hold out a hand, touch the slicksilver,
fingertip to fingertip. “Make a fist,” your doctor
asked yesterday. But you can’t anymore. Arms
ripple their own nerves, and the child they held

has been gone for years. You used to laugh
and swing her up, that game you played best –
just a small girl’s arc through air. “Higher,
Daddy, higher.” First base: front step,

lunch pail beside you, crickets rubbing wind.
Old weathervane spinning on the barn. Radio
scores from the kitchen: no errors. You will
make one. Somebody else can be champion.

The glass tarnishes everything. Your shadow
drops its razor and rolls away. Supper flows
from a bag, libation for a man without hunger.
Bottom of the ninth: Steee-rrrriiike threeee!

In your head, you flip that chair and run crazy
down the lawn, gut trailing a tube. Those damn
wheels slowly turn and stop. You churn for the plate,
dust on your legs, no breath, nothing but crickets.

A long slide home.

“Emotional Predators” of the Elderly

Aug18

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

On the Road Again

May13

How ’bout them Habs? That final game should be somethin’ else! I have a happy husband this morning. We are Canadian, so we tend to root for the only Canadian team in the Stanley Cup race. However, Boston has Canadian players too. Brad Marchand is from our part of the country. And of course, there’s also Sidney Crosby; the Penguins face their own seventh game, do or die. We are hoping for “do”.

For those unfamiliar with Nova Scotia, this is a small province. The odds of producing NHL players are probably against us, owing to population. Yet produce them we do, and not just your average puck-chasers, either. According to one list, there have been 68 NHLers from NS. However, Yarmouth’s own Jody Shelley was omitted from that roster because he wasn’t born here, but his formative years were all spent in NS. He was a local favourite during the many seasons of his on-ice career.

So most Nova Scotians know and love their hockey, even when we don’t always watch every game on TV or at the local arena. My late father, Bert Levy, coached and/or managed teams in the Annapolis Valley back in the day. As a child, I often went to the old Acadia University rink to watch Valley Hockey League contests with him. I vividly remember the excitement, the smell of the place, the hot dogs slathered in mustard! I’ll write about my father in another blog entry at some point.

We have a visit to the ALS clinic tomorrow at the NS rehab centre. We’ll soon know every curve in the road to and from Halifax. I need a good cushion for my butt … which in itself IS a cushion, but not nearly enough! I take along my camera(s) and manage to make the most of the drive whenever I can – but I will never again leave a camera in a hospital! I made that mistake when we were at the Infirmary for the second neurological consult. I had thought of walking through the Public Gardens during David’s tests, to shoot a few images of whatever was in bloom, but misplaced my Canon T4i in the examining room instead. A month later, it came back to me after someone found it and the neurologist’s office tracked down the owner. Meanwhile, thinking it lost, I’d already replaced the missing camera with a Canon 7D, so now the T4i has become a nice backup for the newer and fancier model. Both cameras will last me twice as long. And the lesson has been completely absorbed. They stay locked in my car!

Still, these drives are daunting after awhile. They take seven hours, round-trip, not counting any stops. Our daughter works at an elementary school in Yarmouth; she’s a guidance counselor at Meadowfields. The staff raised money to buy us gift certificates that are certainly making these trips easier to bear. This will be our fifth one and we continue to be grateful for their support. The ALS clinic is held twice a month but I don’t think we need to attend all of them, although there will undoubtedly be a referral or two to other specialists in the future. This week’s consult will involve an anesthesiologist, whose field is pain management, and a GI surgeon. The topic of placing a PEG tube is very much in everyone’s mind right now. ALS patients (PALS) risk choking and aspiration of food as their swallowing function diminishes. Yet they require nutrition, of course, so a feeding tube permits them to receive it with greater safety and comfort. Bulbar-onset ALS, which David has, first affects the throat, voice and associated areas. In fact, he first knew something was drastically wrong when he began choking on his food and swallowing with great difficulty, accompanied by slurred and indistinct speech. Fine-motor control in his hands has greatly diminished. Yet he can still use his legs and get around, albeit more slowly. Limb-onset ALS – which is the more common type – attacks the legs and the other issues develop later. It is, however, normally slower to progress. David’s bulbar symptoms began only in October, 2013.

So he can take walks if he doesn’t overdo it and wears proper shoes. Still, one should never assume. To the casual observer, such a patient appears to be able-bodied. But with a bulbar patient’s loss of strength to eat well also comes weakness in other locations – fingers, hands, arms – and inevitably it spreads to the legs, often striking one side harder than the other for a short time. We are there now. The falls at unexpected moments have started to occur. For a man who not so long ago climbed Gros Morne mountain in Newfoundland, this is a frightening and devastating consequence of his condition.

So the paperwork increases. A form for a handicapped parking permit is waiting to be completed. The definition of a disability includes more than confinement to a wheelchair. Those who suffer from conditions such as ALS, and are still able to walk, fit the definition if they are physically limited to short walking distances. In a small community, mall parking lots tend not to be too daunting but in larger centres, they can be vast. I’ve gained insight into those who park in a handicapped spot and then walk away from their vehicles. Some folks assume they’re abusing the system – and this is not so. They are simply trying to remain mobile, within the limitations of their strength, but can’t push things too far (literally). For cardiac patients, these limitations can arise from severe shortness of breath. With neuro-muscular conditions, such as ALS, there can be other difficulties. When those motor neurons quit, they quit forever. This can happen faster with over-exertion. And in the end, inevitably, the wheelchair and other obvious support devices will come. The series will, in essence, be tied at that point. Nobody should wish this to happen to a stranger in a marked parking space. So if you spot someone parking in a handicapped space, then walking to the mall, please keep an open mind. Please be compassionate. The reality is often not what the appearance might suggest.

We learn as we go. Looking back to May of last year, who could have imagined how life would take such a radical shift? But it does, for many people, all the time. We’re not unusual. Each of us confronts his or her own destiny, for good or ill. There are no fixed strategies to reach that destiny, no set rules of play. We just find the best approach and trust it will get us there. And that the team will bring its A game, every minute of regulation play, right through to a hard-fought overtime. That’s the goal, after all. This disease will win in the end but it’s not much of a victory when the winner plays dirty. And ALS plays very dirty indeed.

At Life’s Summit

Apr24

From this point, a person can look down and back. All the braided paths – so far below – are worn like ribbons in the stone and clay. The man or woman stands at a peak, buffeted by colder winds than either has ever known. Eyelashes blink themselves free of ice, then blink again. No matter that it is spring – or summer – or whenever else they find themselves up here. This chill is no respecter of time or season.

ALS – At Life’s Summit.

If anybody were to think ahead and idly imagine the worst among physical afflictions that burden humanity, surely this one would top the mountain. It is pitiless; its grip is implacable. It holds its chosen men and women firm on the pinnacle, with nowhere left to go but down.

Yet the view remains remarkable. The air is clean and the noises of earth diminish, with their currents of anger, despair, grief and hatred. Up here, it’s between the individual and his or her own will. The body fails but the mind endures. Hands that no longer possess the strength to write a single syllable are replaced by a power of another kind – the power that moves even this mountain; even this weight. Muscles have nothing to do with such a force. If it comes from any identifiable source, that source is the soul itself.

And it doesn’t make any difference whether he once threw the fastest pitch in the league or told a thousand pilots they were cleared for takeoff; whether she sketched a whirling sky or played a Bach partita that wakened God Himself. Whether they stood in front of elementary-school classes or stitched the seams in baseballs. It’s all irrelevant to the man or woman poised on the apex, confronting a destiny that will avalanche every former thing down the slopes and into the past.

The first to go might be the legs with their capacity to walk upright, toe-tap to a fiddler, wander along a beach as the foam fills in each footprint. Or it could be the formation of words, the easy flow of language like a waterfall, clear and coherent. The brain knows what it wants to speak; the throat or tongue or lips refuse to acknowledge its wishes. A man’s roar of laughter is muted; a woman’s cheerful giggle falls silent. A glass of wine turns to an instrument of strangulation. A satisfying meal becomes merely the memory of that meal, distilled into something the body will accept. A steak morsel, a lobster fragment, a strawberry slice, are held in the mouth like promises that can no longer be kept – tasted, then taken away. They are but ghosts from a feast remembered.

Yes, the world shrinks and constricts. It allows small room for resistance. This disease shows few mercies to those whom it seeks to partner. There are no bargains. The odds tilt sideways until every card is in the hands of the enemy, and its opponent’s hands can hold nothing at all. Not even empty air.

Yet the man remains; the woman holds on. They discover new ways to communicate, plan, and dream. They don’t abandon themselves, nor do they expect the rest of us to give up on them. We can’t always control what changes us, or deflect its momentum, not even a little. They already know this. We stand before them in awe, wondering whether we could face their fate and remain unbroken by it – brilliant and brave and somehow ageless. Printed immortal on the firmament, like the tracery of a comet that has passed but not entirely vanished.

For they are resolute, even when there are no voices left. As we watch, they quietly rise and shake the stars.

My husband, David, diagnosed with ALS in 2014 …

A New Year’s Day Reflection – 2014

Jan1

The year has ended and so we move into another one. Linear time is the only way we can organize our lives, the only structure our minds can grasp. And by that measure, it is 2014 – January 1st. The dual face of Janus gazes ahead, and turns away from what has gone before. Whether we are leaving a good year or one we aren’t sorry to abandon, may we all find hope and joy in the new version.

Yet there is also, perhaps, a form of concurrent time … a nagging sense that somewhere, all things are happening at once. Our child-selves race and climb, bruise and laugh. Our parents are whole and young; our first loves hold out their hands toward us. Summers stretch ahead, innocent and bright. The sea rolls cleaner and the leaves bear no scars. There are gleaming trout and salmon in those other rivers. Snow falls unmarked by grit and wood smoke hangs in the winter air. We stir the cream through our milk and eat fat molasses cookies without a second’s pause. Ours is the kingdom of anticipation.

In that strange framework where time runs parallel to itself, we are winding through an endless conga dance and every sorrow, every triumph, every delight or pain is woven into that line. They are all ours to know again. We dream ourselves into each well-remembered scene and suspended moment. Hours no longer stride across the world like booted enemies. The only borders are those we build in our sleep.

I know, I know! This is but the ramble of an aging mind. The longing of a heart no longer certain it is entitled to long for much of anything. Health, perhaps. Comfort enough, peace enough, coins for spending and a scatter of stars for feeling insignificant. Things that my brain is able to set out – here, and here, and over there too. A table where all the cutlery is neatly arranged, and nothing takes me unaware. I suppose there are worse prospects than organization but I’d rather have disorder and surprise. The feather dropped in my hair from something unseen. The cat that holds half my memories in her eyes.

Happy New Year to my family and friends, and a glass raised in salute to you all! May you move forward with optimism and courage, but bundle the older years around you like a worn and familiar coat.

Ring the change and listen. The sky is chiming tonight, like a great bell.

A Salute to Seafarers

Dec7

Lobster-Trap Dumping Day
(Sandford 2012)

The moon swims on an indigo sea, a drift
of mist across the horizon’s swell and shift,
star-gleam, wave-play, foam-sigh on breakwater.
I gaze from the wharf and shiver with my daughter
to watch the boats process below our places,
traps bright as candy, ropes, far-looking faces
already out there, already somewhere ahead

on the open ocean. No fanfare here – instead,
just a scatter of women, a quiet man with phone
to capture the moment. We move to the rocks, alone
in the gathering silver. A last boat leaves us there.
Its trail of light is hung on the edge of air
as we turn to go, while moonset drags the sky
with a wrap of cloud. We smile – my daughter and I –
and stumble back to our car in the rising dawn.
When we pause for one last glance, the lights are gone.

Brenda Levy Tate

Living by the ocean, as we do in Nova Scotia, entails both risk and reward. The rhythms of the tides lap our shores and pulse through our bodies, even when we’re far inland. There’s always an awareness of this regular beat, the monotone that never ceases keeping time. Click – high tide – click – low tide – and all the suspensions between: these are the measure of our days and years.

Whether or not our own families include those who fish or otherwise make their living from the waters, we all know people who do. Most of us enjoy their catches and support their efforts by purchasing fish. It is a fair exchange although, sadly, the market prices seem to have little bearing on what the fishermen receive.

And yes, I call them “fishermen” as opposed to “fishers” which, to me, are small and rather mean animals. Furthermore, I admit that in the Bible, the term “fishers of men” is used. That doesn’t make much of a case for “fishers”, though, because “of men” is pretty exclusive too.

Women participate in the fishery as well. They’re included here. Language that is reshaped by political correctness can sometimes turn rather ugly and, to me, that’s the case with something as ancient and honorable as the fishing culture. When I was a child, catching brook trout, my Dad always used to call me “a good little fisherman” and I was fine with that. It’s just a term. I will continue to use it, because “fisherwomen” sounds so awkward … and besides, the “men” ending is part of “women” too.

For those unfamiliar with this particular occupation, the first day of the lobster season probably holds little significance. For us, down in Districts 33 and 34 in southwestern N.S., it is a time for both celebration and anxiety. Termed “Dumping Day”, it signifies the placing or dumping of traps in each boat’s assigned grounds. They’re hauled by the thousands – up to 400 per boat, divided into manageable numbers and dumped on more than one trip – then cast into the sea, attached to buoys that mark their locations. The early morning of this day is observed by those on shore, who gather at wharves and other coastal sites to see the boats off. At Yarmouth Light, there’s always a crowd, enhanced by music and photographers and a breakfast for all present. The boats parade past, gleaming in the pre-dawn darkness. Their mast lights float like stars.

On the wharves themselves, closer to the actual departure of the boats, friends and families assemble to watch and bear witness. I prefer this; it allows me to see the action close up. It’s a more personal experience to stand, wave and wish good luck. My camera catches the foam, the crew balanced on the gunwale or standing on deck, the stacked traps, the procession of boats in a line of hope that strings across the horizon. No diamond necklace is as beautiful as this sight. I enjoy reading the inventive and often comical names given to these sturdy Cape Island craft: EZ-Go-n; Full of Bull; Obsession; Knot Too Shore. Then there are boats named for loved ones, usually children or wives. The family’s story rides on the waves. One cannot separate the boat from those whose lives depend on its bounty.

Almost inevitably, there will be some kind of mishap. The boats are heavily-laden and now and then, one will be swamped and come to grief. It is a good first day when this happens only once, or not at all. Sometimes, an engine will fail, or a crew member will be injured. At the very worst, during the several months of the season, a boat will be lost and her hands will perish in the bitter North Atlantic swells. This is the unthinkable; this is the knife-edge that touches every fishing community with its tracery of fear. Every seaside town or village has its own monuments to those whom the ocean has taken: some are visible, others carved on the hearts of the people. The list of surnames often contains considerable repetition – fathers, grandfathers, sons, grandsons, nephews and cousins, all gone from the world but never from remembrance. When we sit down to a lobster dinner, we are partaking of an accumulated heritage. We are also commemorating courage, determination and danger. No fine thing comes without its price.

But another Dumping Day has passed. The boats once more ply the Gulf of Maine and offshore currents, hauling traps, bearing their harvests, returning again and again. I often walk the shorelines here and step past washed blue and orange gloves, bits of wire mesh, rope, buoys. On a rough sea, it’s easy to drop something overboard. Lines and cables break. The evidence floats back to these rocky beaches where it lies unclaimed.

Here’s to a successful and safe fishery from now through to the end of May! Or, in the words of a Yarmouth business whose sign would probably be taken the wrong way in most inland places:

“Have a Good Dump!”