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 We’re all gifted with time and capability – until suddenly, the gift is withdrawn.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