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Tripping on the Road: August 20, 2014

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.

 

(c) 2014 Brenda Levy Tate

 

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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.

The Sun Always Rises …

I awoke before 6 AM and realized that today would arrive in spectacular fashion. Perhaps it was the faint play of light on mist; perhaps it was the silence that wrapped both water and sky. Perhaps it was just my own body stirring from sleep, anxious to stand and celebrate the dawn, as humanity has done from its own earliest rising. I grabbed my camera and hurried to the car. The sunrise is no longer centered above my section of the Tusket River but I knew it would be positioned over Lake Vaughan, one minute’s drive from my house if I could get there in time. And so it was. Here’s what I saw as the light shifted and changed, minute by minute. I hope you enjoy! Carpe diem … right from the beginning.

~ Brenda

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