Tag Archive | ALS

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 We’re all gifted with time and capability – until suddenly, the gift is withdrawn.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

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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.

corberrie church IMG_3731

 

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. 

On the Road Again

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

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.

David Tate with Cash

My husband, David, diagnosed with ALS in 2014 …