by Bruce Kirkby
The fundamental goal, our support counsellor explained, was to stretch Bodi like a balloon, over and over—gently pushing his boundaries outward, then letting them relax in again, just not quite so far.
At the same time, we wanted to prepare Bodi for a society that would almost certainly be confused by his eccentricities, and at times perhaps judge them harshly. In today’s increasingly busy and distracted world—I’ll be the first to admit I’m a prime example of this modern condition—anything “different” demands extra attention, and thus has the potential to become an imposition or irritant. The result, I suspect, is that we have developed a boundless taste for homogeneity; we like things predictable, in our coffee shops, in our hotel rooms and in the people surrounding us. Mustering the time and empathy required to bridge differences can often exceed society’s collective capacity.
But amidst a constellation of therapists, support groups, interventions and counselling, it was impossible to say if our efforts were helping Bodi. All we could do was everything we could do.
The only thing we didn’t do in those early years was share Bodi’s diagnosis with him. Our support counsellor suggested he was too young to grasp the implications. Better to wait, perhaps until he was seven or eight.
But as our departure for the monastery loomed, the approaching presence of the film crew presented a dilemma. They would surely notice something was different about Bodi, and we wanted our son to be portrayed fairly. Yet disclosing his diagnosis to the crew meant sharing it with the world. It was a decision we agonized over.
Friends and relatives urged us to keep Bodi’s autism a secret. We’d be labelling our son, they suggested, making him a target for judgment amongst peers. He should be the one to choose when and where to share his diagnosis, later in life—if he wanted to at all.
While Christine and I understood this rationale, in the years since Bodi’s diagnosis we’d come to see the situation differently. At the core of our thinking lay one simple conviction: we tend to hide the things we are ashamed of. And Bodi had nothing to be ashamed of. So why keep it a secret?
Having learned the telltale signs of spectrum behavior, Christine and I could see indicators everywhere—at the cinema, on the skating rink, in school. All around us, children and adults were slipping through the cracks. If our television series could help reduce the stigma of ASD, or play a role in improving early diagnosis—even for one child—that would be worth it.
So we told Wes a month before departure, explaining that Bodi’s symptoms were subtle and included such things as rigidity of thinking, preference for routine and avoidance of eye contact. I didn’t share my suspicions that, for Bodi, a camera lens might resemble a gigantic eye.
* * *
The day after the pink bracelet incident, we departed from Busan on a high-speed train bound for Seoul. Bodi sat beside me, carefully sketching the Hanjin Ottawa in his journal as the lush peninsula flashed by at three hundred kilometers per hour. While he worked, I gazed affectionately upon our blue-eyed son, who loved sushi, whose favorite color was “sparkly purple,” and who would one day surely grow taller than me.
This pencil sketch, like all the others found in this book, comes from Bodi’s journal.
With his keen insights, black-and-white beliefs and searing honesty, Bodi was changing the way I viewed the world—for the better. In the luminous words of Temple Grandin, one of autism’s leading advocates, he was “different, but not less.” My only desire was that Christine and I could help him come to see his autism spectrum diagnosis not as a curse, but rather as an essential part of what makes him special.
I. His specific diagnosis was PDD-NOS, or pervasive developmental disorder, not otherwise specified, which sounds unsettling, but denotes a high-functioning umbrella encompassing what was formerly referred to as Asperger’s syndrome.
II. A Velcro strip in the bathroom held squares for 1) Toilet, 2) Wash Hands, 3) Wash Face and 4) Brush Teeth. Before bed, as Bodi completed each task, he flipped these squares in sequence to the “done” column.
3 AN ARMY OF TROJAN HORSES
Seoul appeared like a scene from Blade Runner: neon lights, sirens, drizzle and twenty-five million people.
We took shelter in an ancient hanok neighborhood, an oasis of tile-roofed dwellings intersected by cobble footpaths, nestled in the city’s core. The barren rooms were divided by paper walls, and we slept on hardwood floors, atop thin mattresses lavished with silken pillows. The boys gathered these to create a foam pit which they leapt into, despite Christine’s reservations. The ceilings had been built with fourteenth-century farmers in mind, so low that even my stooped shoulders touched them, and we were forced to eat outside in a bamboo-shaded courtyard, slurping noodle soup and devouring yellow melons the size of softballs.
For two frenetic days we criss-crossed the city, travelling by subway, ascending Seoul Tower, taking the boys to Lotte World (an exhausting indoor theme park) and visiting the demilitarized zone that borders North Korea.
On the third morning, a taxi carried us to a cavernous ferry terminal in the nearby port city of Incheon. We passed the hours before departure playing cards and reading. Gradually, throngs of Chinese tourists started to arrive, returning home with the spoils of shopping. Thrilled at the sight of our porcelain-skinned, fair-haired boys, they gathered around us, snapping selfies. Bodi irritably waved them off, but Taj obliged, happily posing with gaggles of strangers who all stood poker straight.
I was reading a Chinese travel guide when I heard him scream. Leaping up, I spotted the writhing boy being carted away in the arms of a short, middle-aged woman. Christine and I sprinted to intercept, but Taj had already escaped. The woman, wearing designer sunglasses and thick makeup, apologized profusely. She was clearly mortified and meant no ill, explaining she only wanted to photograph Taj with her family. Still, it marked a shocking cultural divide. It was hard to imagine a Canadian stranger plucking up a child and carrying them away without asking a parent first, or going to jail after. Even more staggering: the woman still wanted to take Taj’s photograph. Once again, she tried to drag him toward her waiting family. Christine lost her patience and waved the woman off.
Since arriving in Asia, Taj had revelled in the attention his strawberry-blond hair drew, but now as strangers continued to seek photographs, he rebuffed all. Christine felt dreadful. “He’s so sensitive. I should have realized it was becoming too much for him.”
Then an extraordinary metamorphosis began to unfold. Bodi, of his own volition, started jumping up and offering himself as a photo subject when strangers approached, enduring the loathed act as a decoy to protect his brother.
When a whistle sounded, the throngs pressed toward escalators, boarding an aging ferry reminiscent of TV’s Love Boat, where the carpeted hallways were scented with mildew and dolphin statues spouted rust-colored water. After dropping our duffels in a cramped berth, we were picking over a buffet of seaweed and congee (rice porridge) when the ship cast its lines, departing on an overnight journey across the Yellow Sea.
* * *
Great overland journeys, once common among backpackers, are no longer in vogue. I suspect the limiting factor is time; no one has enough. Vacations of more than a week are widely viewed as an indulgence. And the concept of taking time off without pay, or god forbid, quitting work altogether for the sole purpose of travelling on a shoestring across continents, appears even more unsettling. How will you survive? What about your mortgage? And the blank space on your resumé?
Months earlier, as we started planning our journey to the monastery, the idea of jetting across the globe in search of stillness felt wrong. So I’d suggested to Christine that instead of flying to the Himalaya, we travel by surface, embarking on a long, slow journey in the style of yesteryear, with kids in tow.
She did not initially share my enthusiasm.
It wasn’t the hazards of such a journey that worried her, but rather the sheer and unrelenting effort required. How could we shepherd our two y
oung sons halfway across the globe when just the four-hour drive to Grandma’s was often a marathon of squabbles and tears. But as we pored over maps and considered possible routes traversing a tapestry of environments and cultures, the idea of an overland journey grew more enticing.
Friends and family, on the other hand, thought we were insane. What? Why? Seriously? What about school? When we asked Bodi’s teachers about home-schooling, they scoffed, assuring us he’d learn more on the road than in any classroom.
The first major hurdle we faced was finding passage across the Pacific. In a world connected by airlines, steamships no longer ply the oceans. A handful of cruise liners make the journey to Asia each autumn, but the timing didn’t work. Buying a small sailboat and crossing the Pacific ourselves was more than Christine and I wanted to tackle, especially with young boys. The only solution was to seek berths aboard one of the massive container ships criss-crossing the globe.
“There is no way you’ll get a three-year-old aboard,” declared the first freighter agent we called, part of a relatively unknown cadre who specialize in booking passage aboard cargo ships. “Marine insurance covers passengers between the ages of six and seventy-nine. No one is going to risk millions of dollars of cargo to get you and your babies across the ocean.”
After weeks of digging, we managed to uncover a German carrier whose insurance covered three-year-olds, and immediately reserved four bunks aboard the Hanjin Ottawa.
Neither of the boys’ grandmothers (both grandfathers had predeceased them) raised questions about our overland journey plans—either they trusted our judgment or had learned by now we weren’t going to change course. But as word of our impending departure spread, some ferociously negative responses erupted, usually from strangers who itemized the morbid ways our boys might perish: communicable disease, traffic accident, pollution, poisoning, diarrhea, snake bite and stampeding yaks. No one mentioned the perils of high altitude—which of all the dangers swirling through my mind was the one that kept me awake at night.
The train across Tibet would ascend to a dizzying 5,074 meters, and we would encounter even higher elevations on the trek into Zanskar. When I contacted a long-established American outfitter in the Himalaya, seeking assistance with permits and logistics, they refused to help.
“Tibet is no place for children,” the manager scolded. “We won’t take anyone under twelve years of age on our trips.”
“Why not?”
“Because they can’t acclimatize. Their lungs are not properly developed. Do you know who Peter Hackett is?”
Funnily enough, I did know Hackett. I’d met the Telluride-based doctor, who specializes in high-altitude illness, at Everest base camp during the ’90s, and on my desk were two papers he’d co-authored, “High Altitude Disease: Unique Pediatric Considerations” and “Children at High Altitude: An International Consensus Statement by an Ad Hoc Committee of the International Society for Mountain Medicine.” Neither said anything about undeveloped lungs or the inability of children to acclimatize.
The advice contained in those long reports can be boiled down to something like this: Go ahead, but be sure you know what you are doing, make conservative decisions and always give yourself an out.
To my mind, it’s an adage that fairly reflects how all risks should be managed, kids or not.
* * *
Bodi joined me on the ferry’s upper deck when China appeared on the horizon, allowing me to nuzzle his warm body close. Then he borrowed my camera and took photographs of me standing before the approaching hillsides swathed in apartment buildings.
The muscular presence of this ascendant country was unmistakable. It could be felt in the great rafts of plastic floating offshore, in the glassy towers that loomed over the once-impoverished fishing village of Qingdao, in the red flags that fluttered on rooftops, in the lavish waterfront parks teeming with joggers and walkers.
Stumbling through a sweaty immigration hall riddled with soldiers and CCTV cameras, we spotted the glum-looking television crew surrounded by customs agents. A furtive glance from Wes telegraphed that they were in trouble. So we marched straight past, pretending we didn’t know them, and joined a snaking lineup. Eventually a stamp slammed down on our passports and we were in. Pushing through crowds outside the station, we leapt into a derelict taxi and melted into the city of ten million.
“Will we ever see the TV crew again?” Taj asked.
I didn’t know. Christine shrugged. They’d surely reappear, at some point.
Our cab raced down narrow streets, past steaming noodle vendors, mobs of mopeds and markets overflowing with curious vegetables. The humid air carried pungent scents of fish, flowers and decaying compost. Asia never fails to awaken in me a boundless sense of possibility, akin to young love. Christine and I, who had visited China together a decade earlier, stole a knowing glance; it was good to be back.
For nine US dollars, we crammed into a family room at a Qingdao youth hostel, a former observatory perched on a lush hilltop near the city center. Outside, a vendor sold fresh-pressed sugar cane juice, and after downing several cups, we wandered the leafy grounds. Taj and Bodi watched elderly beekeepers as they plucked larvae from hives. Later, the pair joined a herd of local children who were making bubbles from dish soap, chasing the glimmering orbs as they tumbled away on a warm wind.
* * *
A pink slip of paper waited on the front desk of the youth hostel. The message advised that the television crew had been granted Chinese visas and were staying on the far side of the city, in the sparkling new Radisson Hotel. We were requested to drop by the lobby that evening at five for a round of interviews.
The Radisson lay two hours away, the manager estimated, because of rush-hour traffic. So I called Wes, suggesting we film the interviews the next morning. But he insisted.
“Are you kidding me?” Christine moaned as we climbed into another taxi. “Clearly those guys don’t have kids.”
We didn’t get back to the hostel until long after dark.
The following morning, we waited for the crew outside the central train station. Taj cowered away from curious strangers while Bodi again offered himself as photographic fodder. As our scheduled departure neared, I searched the crowds frantically for the crew, but to no avail. Time ran out, and not knowing what else to do, we let our tickets pass unused.
Were we at the wrong station? Did we have the wrong time? Without a mobile phone, there was no way to contact the crew. So we waited, sitting atop our duffels beneath the relentless sun.
Eventually a line of taxis pulled up and the crew tumbled out, haggard, red-eyed and devastatingly hung over. They had fallen prey to the cheap lures of Qingdao’s nightlife: beer, karaoke and who knows what else. Nerves were frayed. Arguments erupted. A few were still drunk. One senior producer, unable to stand, was dispatched to the airport by Wes, her job terminated. Christine sarcastically suggested we film an episode about the crew, but it might have been too early for that joke. A tray of strawberry milkshakes from McDonald’s helped calm tensions.
Soon new tickets were booked, and within an hour, we were rocketing toward Beijing, some eight hundred kilometers north, inside the hushed carriage of a high-speed train. Our boys sat beside two exhausted camera operators, their noisy iPad game of Plants vs. Zombies keeping the pair awake.
Outside the windows, rice paddies gave way to transmission lines, factories and nuclear cooling towers. Like South Korea, but on an entirely different scale, it was apparent that China was being dizzyingly reshaped.
Upon reaching Beijing’s central train station, our family bid farewell to the television crew for the night. Christine had made reservations in an ancient hutong guest house, while they were headed to a glassy downtown hotel. It seemed a shame for the young crew not to experience more authentic accommodation—a Los Angeles–based production company arranged their lodging—but it did offer our family a welcome respite each evening.
We crammed our duffels into the trunk of a yellow
cab and jumped inside. But it was some time before the car was able to move an inch, the road ahead completely gridlocked. Nowhere is China’s rapid growth more visible than on the streets of Beijing, where unrelenting congestion and smog have led to space rationing, and new licence plates are awarded on a lottery basis.
As our taxi crawled on, the driver—a jolly old man, unable to speak a word of English—reached over and began stroking my forearms with a concerned look on his face.
“I don’t think he can believe how hairy you are!” Christine giggled. Perfectly hairless himself, the driver appeared aghast that I should suffer such a cruel fate.
Gazing out the window across snarled traffic, toward skyscrapers obscured by pollution, I felt similarly for him. The midday sun was orange and cast no shadow. Pedestrians and cyclists alike wore white surgical-style masks, like extras in a low-budget horror film. How could over twenty million live amidst such apocalyptic conditions?
I was reminded of a television interview in which a Beijing university student was asked what she liked best about Microsoft Windows.
“The screensaver,” she declared.
Why?
Because the twenty-year-old had never seen a blue sky before.
* * *
After four days in Beijing, we pressed westward, toward the grasslands of Qinghai province, where our family spent a week acclimatizing—methodically exposing ourselves to progressively higher altitudes. Then we boarded the Qinghai Express, bound for Tibet.
Crawling into a cramped cabin, our boys discovered nasal cannula on each bunk, meant to deliver oxygen to any passengers suffering the effects of altitude. Immediately, the pair donned the plastic tubes.