If you grew up in Canada during the ’80s and ’90s, then you are most likely familiar with the music of Spirit of the West, a B.C. band that infuses Scottish heritage into its songs in a way no other group had done before. Led by singer John Mann, songs like Home for a Rest secured the band on the local bar’s playlist, and in the hearts of every Canadian.
Now Mann and his wife, Jill Daum, are facing an entirely new battle. In 2014, Mann announced that he’d been diagnosed with early-onset Alzheimer’s disease, and while the band continued to tour, his condition deteriorated and they had to come up with inventive methods to keep Mann performing. Daum, along with Mann’s bandmates, did their best to adjust to the changing landscape and not separate Mann from his true talent and love: the music.
Hot Docs documentary Spirit Unforgettable follows Mann and Daum as they work their way towards Spirit of the West’s final Toronto show at Massey Hall in 2015. (The band recently played some shows in Vancouver as well — officially their final bow.) It is a poignant, at times heartbreaking journey, but overall it depicts a group of people so invested and full of love for one another they’ll do whatever it takes to make Mann’s life comfortable and familiar.
Global News spoke to Daum about the documentary and the band, as well as the personal toll its taken on the married couple as they face this unabating opponent. (Mann, too, was present for the interview, but was there merely as a spectator. For the record, he laughed and smiled the whole way through.)
Jill Daum: Super therapeutic. With John and I, from the start, it’s been about art from adversity. Pete [McCormack, the director] is also a really good friend, so we felt very comfortable.
How have your lives and relationship changed over the last several years?
It’s a slow adaptation, so everything slowly changes. Every once in a while, shock hits you in the face. You slowly go through, and then it’s like “Whack!” then again slowly, then “Whack!” That’s what it’s like.
Many things feel like they come in waves. Is that what it’s like?
It’s just that you can never control when it hits you. Certainly for John. There are a lot of goodbyes. You say goodbye to a lot of things. The biggest thing is you have to put on these blinders and focus straight ahead. There’s the past to the left, there’s the future to the right, and you just have to think about the moment happening now, because if you think about either of those other things, it destroys you.
For me, it’s harder to summon the patience. [Laughs] That’s harder. I think everybody in the band battles it with humour. Certainly John and I, that’s our big weapon. We try to make each other laugh as much as possible.
Have you guys tried any new alternative therapies?
First of all, everybody and their dog has a cure for Alzheimer’s. You start off with coconut oil and turmeric, and then you move into other kinds of things. We went to Switzerland for a really dramatic one — which is featured in the documentary — and John really wanted to try stem cells in Mexico. We went. We tried everything and there is some solace in that.
Thank you. They’ve been incredible. Their support gets us through it, it really does. It’s like a flashlight in a tunnel.
[Mann interjects: Yeah, thank you. It’s been fantastic.]
What was it like for you watching the documentary for the first time?
Well, I was really scared at first. A lot of times when I see young footage of John… I find that really hard. I laughed a lot, though. I laughed a lot about the hairstyles, about the band. We were with a community of friends and family to watch it, so it felt like it united us.
‘Spirit Unforgettable’ is screening at Hot Docs on Saturday, April 30 at 9 p.m., Monday, May 2 at 3 p.m., and Sunday, May 8 at 12:30 p.m. Check the Hot Docs site for full ticket and location information. Hot Docs runs from April 28 – May 8 in Toronto.
There is also a fundraiser for the Alzheimer Society of Toronto, called The Spirit of John, taking place at the Horseshoe Tavern in Toronto on June 2, 2016. Canadian musicians will be there singing Mann’s songs to raise funds for programs.
(***A previous version of this article stated that the June 2 event was for Ontario Alzheimer’s and that Jim Cuddy would be present. We have made the corrections and apologize for the errors.)