I must confess that I dedicate no inconsiderable portion of my time to other people’s thoughts. I dream away my life in others’ speculations. I love to lose myself in other men’s minds. When I am not walking, I am reading, I cannot sit and think. Books think for me.
From “Detached Thoughts on Books and Reading” by Charles Lamb, 1822

So there we were at the far end of Maligne Lake south of Jasper just last week.

We left on a Monday morning from the boat ramp at the end of the long road from Jasper, the calm water reflecting the stunning mountains that surround the lake. One of the classic images on postcards advertising the beauties of the park. Turquoise water, a tonsure of conifers and the grey stone twisting its way into the sky. Barely any snow.

As we sorted and dithered and stuffed our food, tent, sleeping bags, thermarests, tarps, clothes, camera, books, water bottles, cooking gear and toilet paper into the resistant nooks and crannies only a kayak hatch can create, we worried. The forecast was not good – some sun, yes, but rain, too. And it was cool. About 10 degrees.

Finally loaded, booted, spray-skirted, life-jacketed, a big cooking pot at my feet, a bag of wine between my legs, we departed. There’s a funny weightlessness to kayaking (until you try to haul yourself up and out). You are tucked into a boat loaded with all the stuff you feel you need to survive and you’re floating. The boat becomes your lower body, your arms as long as the paddles. It’s a lovely feeling once you’re underway.

The 24-km trip down to Coronet Creek was long, but uneventful. No rain, little wind and a couple of easy landings for rests and food. The water was so calm, we were able to cut across some of the bays to shorten the paddle. What could be better? Our kayaks floated, our bodies more or less worked, and the weather cooperated. An osprey, a noisy family of Clark’s nutcrackers and those mountains. Here in the Bulkley Valley, the mountains are mostly gentle, rounded by glaciation. A few sharper peaks rise dramatically to heights that weren’t covered by the great ice sheet that filled the valley anywhere from twenty to forty thousand years ago. But those Rockies! Paddling through the jagged explosion of stone, it’s easy to visualize the Pacific Terrane inexorably moving into what is now Alberta, pushing and pushing until the rock shuddered, twisted and shattered, throwing those impossible peaks into the air. About 85 million years ago. Everything is insignificant in the shadow of those mountains.

Of course, it’s still happening – the movement that is. Our continents are really stone plates riding on top of earth’s molten core. Deep in Jules Verne territory. You can believe almost anything geological as you paddle down Maligne Lake, every few kilometres revealing a new view, our heads turning to trace new contours.

Coronet Creek itself creates an alluvial fan treed with scrubby conifers, Labrador tea, willow and juniper. We pull ashore, haul ourselves out and begin to set up camp. We’re good at this, each of us doing a series of tasks in sync with the others. The campsite is basic – some tent platforms, an outhouse, a few picnic tables and food lockers (we’re actually more accustomed to wilderness camping, but this is a national park). By the time it starts to rain, we’re all done and gather with the other campers under our tarps: Ontario honeymooners on their third canoe trip here; a grandfather, son and grandson whose family have been fishing the lake for decades; and two mountain guides from Jasper on a busman’s holiday.

We trade stories under the din of rain on tarps, drink a little wine, eat our various dinners and go to bed early, hunkering into the pockets of heat and cold a down sleeping bag creates. We don’t need our head lamps to read because we’re only a week away from the solstice.

It was with some uncertainty I embarked upon the book I’d brought along – Ian Brown’s The Boy in the Moon, a memoir about life with his severely disabled son: Walker Henry Schneller Brown. I was immediately transplanted into a world whose difficulties made my unease in a tent on the cold shores of Maligne Lake shrink into insignificance. Afflicted with the very rare cardiofaciocutaneous syndrome (CFC), Walker is unable to communicate, is fed through a stomach tube and, as he gets older, begins to beat himself so badly he needs to wear a helmet and tubes on his arms that don’t allow him to bend his elbows. Within a few paragraphs, we enter the long dark tunnel of loving this boy.

Brown leaves no emotion – guilt, anger, resentment, joy, awe – unexamined. He explores the ways we deal with such children, the ways they have been cared for, neglected or abused over the centuries, the unlocking of the human genome and what it might mean if all “defective” fetuses can be aborted, theories about how the interrelationship between the brain and the external world produce the mind, strategies to provide for children post parental death. He pins down every sugary sentiment and excoriates it. While he finds that being in the presence of and caring for people with such disabilities does teach us a lot about ourselves, he rejects the idea that these children are somehow “sent” to teach us. Rather, he argues, they are truly human, like all of us. They are on their way to becoming who they are and, like all of us, are vulnerable creatures faced with death. This is why they scare so many of us. They remind us, he says, of our own vulnerability and mortality:

I do not see the face of the Almighty in Walker. Instead, I see the face of my boy; I see what is human, and lovely and flawed at once. Walker is no saint and neither am I. I can’t bear to watch him bash himself every day, but I can try to understand why he does it. The more I struggle to face my limitations as a father, the less I want to trade him. Not just because we have a physical bond, a big simple thing; not just because he’s taught me the difference between a real problem and a mere complaint; not just because he makes me more serious, makes me appreciate time and Hayley and my wife and friends, and all the sweetness that one day ebbs away. I have begun simply to love him as he is, because I’ve discovered I can; because we can be who we are, weary dad and broken boy, without alteration or apology, in the here and now. The relief that comes with such a relationship still surprises me. There is no planning with this boy. I go where he goes.

The questions people with severe disabilities are always asking, he surmises are: Do you consider me human? Can I trust you? Do you love me? The technology most desired are electric wheelchairs, he discovers. Not for the mobility they offer, but because they enable their users to go toward the people they love and stay away from the people they don’t like.

I thought about Brown’s family all the next day as we hiked up to the waterfalls on Coronet Creek, as I baked cinnamon buns over the spirit stove, cooked spinach fettuccine for dinner. The temperature never rose much above 12 degrees and on the few occasions our shadows appeared we stopped and rolled our tired shoulders in delight.

The book finishes with a scene in one of many hospital visits. Brown is waiting with Walker for an MRI appointment when the boy has a seizure.

I held him in my arms as quietly as I could, and I thought: this is what it will be like if he dies. It will be like this. There was nothing much to do. I didn’t fear it. I was already as close as I could be to him; there was no space between my son and me, no gap or air, no expectation or disappointment, no failure or success: only what he was, a swooned boy, my silent sometimes laughing companion, and my son. I knew I loved him, and I knew he knew it. I held that sweetness in my arms, and waited for whatever was going to happen next. We did that together.

Anyone who has an ill child has felt that sweetness, that exhausted ending of fear and the sinking into a place where waiting is all there is. Waiting and love.

The Boy in the Moon is an excruciating book, but as I lay in the tent on our last night at the far end of the lake and listened to snow rustle on the fly, wondering just how difficult the paddle back to the other end of Maligne Lake would be, wondering if we were going to be turned back like the young couple the day before when the waves broke over the gunwales of their canoe, I was strangely comforted by the book. I heard Brown’s voice as I tried to sleep. I heard him as we listened to the wind gusting down from those ragged mountains. As we set out into snow flurries to paddle back.

I thought about Walker as we braced against the headwind that hit us as we tried to paddle through the lake’s narrow waist. I dug in deep, remembering the insights Brown came to on his family’s difficult journey. And the work of paddling was lightened. We laughed when the wind finally turned and we unfurled our umbrellas to sail back to our usual comforts, our familiar thoughts, our ordinary lives. Our journey had been, for us, an adventure with just enough difficulty and uncertainty to give it an edge. But my journey with Ian Brown took me beyond the small difficulties into a wildness as earth-shattering as the mountains themselves.

Like Charles Lamb, I love to lose myself in the minds of others, especially when they contain the fierce and compassionate intellect of a man like Brown, who also happens to write beautifully.

Thank you, Ian Brown. And thank you, Walker.