Love survives

Life’s an adventure.
Subway, bus – it doesn’t matter – whenever I’m on public transportation I’m thinking about the same thing: who amongst my fellow passengers would I band together with if our train/bus was bombed, hijacked, or otherwise thrust into movie-esque danger by brute villains, unbridled nature or a traffic jam.
I want to be prepared; I don’t want to get stuck with the spineless, briefcase-toting whiner who’d sell us all out for a nickel or a break for freedom (you know that guy’s a goner anyway) or one of those stock Hollywood women who do nothing but shriek and whimper and refuse to bridge the gaping chasm, or swing from a snapped cable, or climb up the inside of an industrial smokestack before it blows. Those people brown me off.
I want to be part of the wise-cracking survivors – that hardy pod of people willing to do-what-it-takes and get off a good line before facing almost certain disaster.
I’m sure you do this too. If Hollywood has taught us anything, it’s taught us that no matter the circumstances, in any random group, planeful of passengers or disordered mob exist all the various personality types necessary to thwart danger, right wrongs, or, in my case, assuage boredom. The fact that it doesn’t hold true in real life is hardly the point; in real life most people just want to get where they’re going, and in our stepping-over-the-homeless to get to Starbuck’s society, heroism seems in mighty short supply these days.
So what if I’m just on my way to the vet (a bus and two subway changes) to pick up a fresh supply of (one of) the dog’s medications (how I ended up with the $4 coffee and a pink bracelet I’ll never know…) Both coming and going – at off-peak hours – there’s still oodles of fun to be had on an otherwise tedious side-trip with just the merest flick of a sideways glance every now and then. Wearing sunglasses helps too; staring on public transit is a no-no (everybody knows) so if you want the widest possible pool of compadres, it’s best to do your eye-balling surreptitiously.
You’ll need: 1 (one) incredibly good-looking guy complete with piercing eyes and tortured back story; 2 or 3 (two or three - one bald) sarcastic buddies with hearts of gold. Remember: at least one of them will have to be sacrificed before it’s all over, so look for some real charactery characters. You’ll need a nurse, a young mother (and baby) some game older folk, a handful of disposable extras who’ll do as they’re told and at least two craven cowards. (See above.)
Et voila – your cast is complete, change at Bloor.
For the last few months, all my adventures seem to be of the minor-league Sisyphean or Aegean Stables sort: the pushing boulders pointlessly up steep slopes, or mucking out filthy stables kind. Sorta hard, kinda boring, sleeves rolled up to eternity and no end in sight. So if I manufacture adventure on the Avenue Road bus, what’s the dif?
Until you come across a real adventurer or two and you remember that for some people being poised on the brink of life and death, facing enormous heart-breaking choices and bearing agony with dignity is a daily reality.
I met two such people recently.
Just about the greatest thing I get to do on a regular basis is volunteer at Sick Kids; wearing the volunteer vest with pride and being allowed to spend time with people who might just be in extremis (or quite possibly worse: watching someone they love in extremis) is to take part in life at a time when it really matters. All life matters of course – but some parts take place at the thinnest possible edge of a very thin wedge, when if you’re lucky, you may be able to help someone when they need it. My sort of helping – a volunteer’s sort of helping – is obviously not of the actual life-saving kind; it’s more of the moment-saving kind. Bringing people back to moments of normalcy and just remembering what it is to be not just a patient or a parent, but a human. A kid or an adult – playing a game, going for a walk, sharing a laugh, fixing someone’s hair, talking about boys, movie stars or sports. It isn’t earth-shattering, but sometimes it’s deliciously, run-of-the-mill, just-another-day grounding.
So I met this mother/daughter duo recently, and something about them touched my heart to the point of breaking. Meeting heroines doesn’t happen every day, but it happened on this particular day – a day when the mother and I also discovered we have a shared past (having lived in the Bahamas at the same time as children, our fathers in the same line of work, many of our friends the same). It was a point of recognition and connection and maybe why we snapped into bonding-mode quick as a reflex action. But maybe not. Maybe it was just because she was wonderful, and honestly? She shone. She shines.
And so does her daughter. Though shining from a place deep, deep within, as this fourteen year old has been virtually completely incapacitated by a shockingly cruel disease, unable to speak or move, trapped inside a tiny, emaciated body, but bursting with life and joy all the same.
This little girl has a disease called MLD – Metachromatic Leukodystrophy – a degeneration of the white matter of the brain and the central nervous system. It’s a rare disease, one of a small grouping of diseases (most famously one of the leukodystrophies – ALD – was portrayed in the film Lorenzo’s Oil) that are characterized by the destruction of the myelin sheath, the loss of which rapidly robs the sufferer of movement, speech, sight, cognition and ends a few too-short years later, in death.
Perfectly healthy until the age of nine or ten, the disease first reveals itself in the child in a variety of behavioural changes, prompting many parents and doctors to treat it as a behavioural or psychiatric problem before the hard-to-diagnose/impossible to treat condition is finally identified. There is no cure and no treatment other than to alleviate as best they can the effects of some of the symptoms; families are left to cope with the reality of the unutterably altered life of a beloved whose last years and days are all too easily imagined. The child’s mother described it to me as manifesting as a combination of ALS (Lou Gehrig’s Disease) Multiple Sclerosis and Alzheimers – any one of which would be devastating, but as a group nothing less than mind-bogglingly horrifying.
And yet, and yet…
They laugh. They smile. They hope. They love. They face reality. They pray. They accept support and offer love in return. As a family they are united and strengthened. They attract the love of others as easily and naturally as a bee collects pollen, and share it as organically as that same pollinating bee, with much the same beautiful, flowering results.
I love being with them. I love to be in the presence of that miraculous mother/child love that knows no limits, not even of death.
As I observe a small, small snippet of their lives I know I’m seeing heroes – not a briefcase-clutching whiner, or chasm-avoiding shrieker in sight. There are no brave, sarcastic quips tossed over the shoulder, only meaningful, warm connections that resonate with affection and faith.
It’s THE great adventure. And I would follow this pair anywhere.