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