None of what follows is to say that last summer's glorious national outpouring wasn't the astonishing thing it was, when the Tragically Hip and its lead singer, Gord Downie, diagnosed with terminal brain cancer last December, took a goodbye tour and stopped the country still.

The self-described King of the Hosers and his band had composed the true national anthems of a generation. The Hip's last waltz created something else again: a collective stillness that reminded millions of Canadians of what it meant to be here, and what it will mean when Gord Downie isn't.

But that was last summer. This story isn't about that. This story is about what happens to Gord Downie next.

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'It's about patience, and respect'

On the band bus last Monday, halfway between Peterborough and Ottawa, Gord Downie is talking about reading and writing and listening to music, which means he is talking about his memory. Two craniotomies since last December to remove a glioblastoma multiforme in his left lobe, plus radiation and chemo, have left him with an unreliable one. For the ultra-literate, hyper-word-conscious Downie, this is a cruel fate.

You can see his scar, a sunken valley dropping down his left temple from under the ever-present fedora or ballcap. He has his hats made at Lilliput Hats in Toronto, "at College near, what's the name of that street, the one that's west of Spadina, but not as far as" – "Grace?" – "not as far as Grace. Oh, God, you know, starts with a B," and on it goes, until finally someone says "Bathurst!" and Downie says, "Good boy!" and is so visibly relieved you would think his house had just been rescued from a flood.

"It feels like it's all melding together," is how he sometimes describes his memory. He can change subjects faster than a hockey team can change lines, but he always has, and it's not clear that it's not intentional.

Downie has been in Peterborough with five of the best musicians in the country – Kevin Drew, Dave Hamelin and Charlie Spearin of Broken Social Scene, Kevin Hearn of Barenaked Ladies and Josh Finlayson of Skydiggers – to rehearse Secret Path. It's a collection of songs Downie wrote with Mr. Drew and Mr. Hamelin, set to an animated film based on a graphic novel by Jeff Lemire, who is to graphic novels today what Downie was to rock in the late-nineties. The songs, book and film tell the true story of Chanie Wenjack, a 12-year-old Ojibwa boy who ran away from residential school in 1966 and died of exposure, 50 years ago on Sunday, trying to walk back home to his family, 600 kilometres away. It's Downie's latest, proudest project, and possibly his last. The next night, in Ottawa, where the band bus is headed, the lads are performing their rock opera for the first time at the National Arts Centre.

Chanie Wenjack. Family handout

Downie hates the fact that he can't remember names, which leaves holes in his patter. He gamely tries to fill them. Favourite Dylan album? He can remember the album cover but not the name of Street-Legal. He knows Van Morrison made an album in four days, but no longer recalls that it's Astral Weeks. "Hey," he says to the group when someone asks, "do any of you know what my favourite Hip song is? What's the song, Vienna …

" Springtime in Vienna."

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"Yeah. Good. Jesus."

His conversation flows like that now, forward but sometimes around. "I'm thinking the way I talk now is like the way a native person walks. And the way they talk. And if we want to take a moment" – he pauses – "and prepare our thoughts" – "no one's going to jump in. It's about patience, and respect." He appreciates the consideration more than he ever did before. "I appreciate it, because I just discovered it."

His portable pill box, mostly anti-seizure medication, has at least 50 compartments. He gets the pills from his younger brother Pat, a former sound engineer in Boston who has moved to Toronto to take care of Gord (Pat, 48, has separated from his wife, as Downie did from his before he became ill). "I can't be left alone," Downie says. "Apparently." Their older brother Mike, 56 (a documentary filmmaker and co-producer of Secret Path) is on the bus as well. They're the kind of family that under duress takes refuge in family. When their father Edgar died last Halloween, each brother took a souvenir from his belongings. Mike took his wedding ring; Pat took a gold chain; Gord took his false front tooth, which he carries in a jewel bag and occasionally produces in meetings. No further description necessary.

Gord Downie performs his new album Secret Path at the National Arts Centre in Ottawa. Dave Chan/for The Globe and Mail

Downie has started to read again – he couldn't remember anything long enough to do so immediately after his operations – and can now put in 15 to 20 minutes with a book at a stretch. He feels stronger than he did, but doesn't know how long he has: His cancer is the kind that can change its mind. "But I may be one of the lucky ones. I'm reluctant to say, because I'm kind of throwing the snake eyes. What if I live another seven years, and people say, 'you asshole!?'"

He worries more now about his emotional ledger. He has always tried to be like his father, "but it's impossible. Because I'm conveniently cutting out all the times I was a dick. But all the people forgave me for that. Or it feels like that. I think those people knew that I didn't want to do that, didn't want to be like that. And after this thing happened" – he makes a judo chop toward his head, his standard move – "they all were friends."

Still, his recovery has been uneven. A month after the first seizure last December, he wrote and recorded 17 as yet unpublished songs with Kevin Drew, in four days. The songs were about people who have meant something to him, and contain a detail only that person will recognize. Very Gord. It was a freer way of writing. "I kept trying to write them in the way I'm talking to you, or the way I talked to, you know, Mansbridge. Taylor Mansbridge." This time it's an intentional joke. (He makes lots of those.) "I came home from that recording session thinking that I had reached the peak of the hill, the, you know, learning curve. And then two days later I had this horrendous seizure." That led to operation two, to chemo and radiation. Six weeks before the summer tour, he couldn't remember the names of his albums. He has recorded some music with the Hip since, but has written very little in his ever-present Moleskine notebook. He labels them with letters of the alphabet. He's up to Y. He says he's not worried.

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He claims to forget the names of his kids, but it seldom occurs. Will he miss them? "I won't know, will I?" he asks, fake sneering. Louie, his 16-year-old son, is on the bus too, sitting on a bench under the bus-brown enamelized walls – it's like riding inside a large intestine – in the protective custody of all the people keeping each other company while Gord Downie fades away. Louie had a panic attack when he first learned his father had had a seizure. He's tall, skinny, wants to be a drummer. He played his first gig last Saturday; his father, 52, was his roadie. "That was exciting for me to see," Downie says. The band's name was Lois Lane – until they discovered that another band, a Dutch girl group, had already taken it. Now Louie's band is considering Dutch Girl Group as an alternative.

The other name Downie never forgets is Edgar – his father's. The Downie boys worshipped him, and still do. Three days after they buried him, Gord Downie had his first seizure. It was a bad winter.

"He was so Zen," Downie says. "And if you said that to him, he'd say, 'What's Zen?'" Edgar sat down when he peed, out of consideration for his wife and daughters. "We all do that," Gord says, and the brothers nod. "Small little guy." Edgar hated anything really frightening, really upsetting, really ugly. Downie now understands he was the same, but couldn't admit it as a teenager. "Maybe that's why I became a writer."

There's a long pause. "That could be my sensation as I'm going out," Downie muses. "'Oh, there's Edgar.' That'd be fabulous."

'If this is the last thing I do, I'm happy'

Today, the morning of the big show, 27-odd members of the Wenjack family are allegedly visiting Ottawa's Museum of Civilization. But Pearl Wenjack is hitting the Rideau Centre to shop.

"I wanted to do something, naturally," says Chanie's older sister as she makes her way to the indoor mall. "But I didn't know how." She had been praying to the Creator that she might get a call from Oprah Winfrey – "that's the only show we watch" – when, one morning a year and a half ago, the phone rang. "Hello?" Pearl said.

"Hi," a man's voice replied. "I'm Mike."

Pearl Wenjack at the National Arts Centre in Ottawa before the live performance of Secret Path. Timothy Moore/The Globe and Mail

Mike Downie first heard about Chanie Wenjack in a short CBC Radio documentary in 2013. The story shook him. He'd heard of residential schools, but like most Canadians didn't know much about them. Mike began to dig into the story. He found a 1967 Maclean's story about Chanie's death, by Ian Adams. Mike told Chanie's story to his pal, the novelist Joseph Boyden, hoping they might write a screenplay together. Boyden mentioned it to Gord, also a friend. The following morning, Gord called Mike. He too was hooked. It happened so fast it was almost weird.

When, according to one insider, Boyden's screenplay didn't seem to be materializing, Gord Downie started to write poems tracing Chanie's fatal walk down the tracks to home. The poems became songs and an album recorded three years ago by Kevin Drew and the band. The songs were followed (after Mike and Gord suggested it) by a graphic novel courtesy of Jeff Lemire. Eventually, after Edgar's death, Gord's cancer and the Hip's famous last tour, Mike and his production partner, Stuart Coxe, persuaded the CBC to take on an animated film version of Lemire's book, to be attached to Gord's music. (It airs Sunday on CBC at 9 p.m. ET.)

All of which was impressive, but for the touchy question of cultural appropriation. Was Chanie Wenjack's story fair game for a bunch of white guys? As if to underscore the question, a (fairly) good-natured artistic rivalry sprang up: Boyden – who is of mixed Scottish and Anishinaabe heritage, and a friend of the Downie brothers – wrote a Heritage Minute about Chanie last summer, scooping the anniversary of his death. He also recently published Wenjack, a slim book, with a rival publisher. (The Downie-Lemire book is already scaling the bestseller list and being reprinted, despite a run of 50,000 copies.) Boyden has also collaborated on a new album by A Tribe Called Red, a crossover First Nations hip-hop band. This game could be called Downies and Indians.

Mindful of their outsider status, Gord, Mike, Pat and a slew of First Nations elders went to Ogoki Post in Northern Ontario to visit Pearl Wenjack in September. The result was the Gord Downie and Chanie Wenjack Fund, dedicated to "cross-cultural education to support healing and recovery." Between the 1880s and 1996, 150,000 children were sent by the federal government to residential schools in Canada. More than 20,000 are thought to have died while at school. It isn't clear Chanie ever understood why he had to go away.

This is the darkness Downie and his cohort are drawn to. "I've spent my last 10 years with the Barenaked Ladies playing If I Had a Million Dollars," Kevin Hearn says. "It's a thrill to be part of something dark, something serious." But it was Gord who seemed to feel it most intensely. He was muttering about Secret Path as he came out of one of his surgeries. During the tour he knew the lyrics to The Stranger, one of its songs, better than he knew the words to the Hip hit Bobcaygeon. There are spiritually inclined elders and partners on the Downie team who think the Secret Path project is making Gord Downie stronger.

"I didn't know there were residential schools up there until 12 years ago," Downie says. The more he learned, the more he wondered why he didn't know more about them, why they weren't talked about in school. (The subject is only now being included in the history curricula of all provinces.) He thought the presence of a 10,000-year-old indigenous culture had the potential to make Canada unique in the world. Instead, "we decided to put them away in a third-floor bedroom and lock it. It's just baffling to me." Canada had never felt like a real country to Downie (as fans of his Hip songs know); without reconciling the twin solitudes of the indigenous and non-indigenous, which he considers to be a 150-year-project, it never will.

"You start looking at all this stuff," Downie observes, and "and it does start putting a damper on all the stuff we're doing to celebrate 150 years of nationhood."

Secret Path is his attempt to change that path in the uncertain stretch of time he has left. "If this is the last thing I do," he says, "then I'm happy." So far, it's working. The fund opened with $3-million in major donations, but since the premiere on Tuesday has raised another $100,000 in small gifts. The average donation is $8.

‘His efforts will not go unnoticed’: Gord Downie’s Secret Path shines a light on First Nations and residential schools 6:06

'This is the only place to be'

At first, when the lights went down in the National Arts Centre on Tuesday, the audience didn't know how to react: It didn't know what it was watching. There was Gord Downie's familiar shovel-of-gravel of a voice, the familiar jean jacket with the lapel compass and a beaded poppy commemorating First Nations veterans. But everything else was unfamiliar: the six monitors to help him remember the words, the haunting, almost orchestral music, the spare chanting lyrics, the tom-tom pulse of the drums driving the starkly drawn boy's journey down the endless railway tracks in the huge animated film on a screen behind the band.

By the third song they were applauding. By the end, they were standing. The Governor-General was there, and you could hear the Wenjack relatives whooping it up in front. Placards throughout the lobby warned of an emotionally difficult evening, and offered professional counsel to anyone who needed some. (Several did.) Weepers were asked to deposit their Kleenexes in birch-bark baskets, so their sadness could be burned away, according to native custom. The ushers collected 30 bags of snotty tissue by the end of the show.

Dave Chan/for The Globe and Mail

Of course, as grave as Chanie Wenjack's story is, it was the added irony of Gord Downie's situation, his own looming stagger down the short track ahead of him, that gave the show its extra shudder. Never mind that the lyrics had been written three years earlier, before Downie was dying. You could feel the resonance especially in the penultimate number, The Only Place to Be, as Chanie, frozen and hungry, lies down beside the tracks for the last time: I'll just close my eyes/I'll just catch my breath… I've got lots of time/My whole life ahead/This is the only place to be. The end is very near by then, and in his fevered mind he sees his home, and his father, and happily leaves this world and enters whatever place it is the mere memory of someone can come from.

Then the final anthem rolled out, the lyrics riding over resolving chords: I feel here… I hurt here… I lived here, here and here, I die here, here and here. More places than we ever know, that is, more significant than we ever imagine. That seems to be the way a life goes, whether it is white or native. That was Gord Downie's point, and his retort to the anti-appropriationists.

"The white man will only listen to the white man," Claudette Commanda, a local Algonquin elder, said of the play's intentions. "If Gord Downie's gonna be the white man that is going to go out there and raise the social conscience of Canadians and government, so be it." Sheila North Wilson, the Grand Chief of Northern Manitoba who had been with Gord up in Ogoki Post, took a more generous view. "One of the greatest gifts a man can give is to give his life for his friends," she said. "And that's what he's doing. Decades later, that's what we'll look back on."

Maybe. Reconciliation has eluded Canada for 150 years, and while a more inclusive school curriculum is an improvement, it's still a long haul. On the other hand, three days after the Downies left Ogoki Post, Pearl had another call.

It was Mike again. The brothers wanted to build a log cabin next to hers. She couldn't believe it. "That's where Gord wants to spend his last days, up there," Mike said. "You and I are gonna take care of Gord." Pearl is okay with that. She's taken care of dying people lots of times, and her brother-in-law is the local builder. He'll be cutting the logs in the spring.

And if the house becomes a visiting artist's residence after Gord dies, one of a future string of such houses on indigenous lands across the country financed by the fund, well, Mike Downie is a guy with a lot of ideas. Until then, Gord says, "I need to see my kids, so I'll go back and forth. I dream about it, but I don't want to get too far ahead of myself. Because of the feeling you get when you go up there. The people I've met, they're so beautiful." Which is another way of saying they don't judge you, because they too know what it's like to face extinction.

Gord Downie comforts Pearl Wenjack after she performed a traditional Anishinaabe healing song at the National Arts Centre. Dave Chan/Dave Chan

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Album review: Gord Downie’s Secret Path delivers on its heavy ambition To describe Secret Path as merely the Tragically Hip front man’s fifth solo album would be a tremendous feat of underselling

Concert review: Truth, in hope of reconciliation: Gord Downie tells the tragic tale of Chanie Wenjack A different Downie from the one leading the Hip takes stage in Ottawa to tell story of aboriginal boy who died after fleeing residential school 50 years ago