Monday, April 29, 2019

Teva Harrison RIP

Teva Harrison died on the unseasonably cold, final weekend of April 2019. She was 42. She died of the disease that had plagued her for the past five years, the disease to which she refused to surrender her spirit, the disease she fought with her voice and her art. Metastatic breast cancer stole Teva Harrison’s body from this world. But her voice and her art and her spirit are very much alive.

I didn’t know Teva Harrison, not like many other people in Toronto did. My lady had bought her book, In Between Days, because it had had such rave reviews and many of our friends spoke so highly of her. The book wasn’t in our house because we were intensely curious about cancer; it was in our house because it was written and illustrated by Teva Harrison. It’s a lovely book, on many levels.

I later met her through mutual friends at a Dolly Parton concert. She was a beautiful woman: with dimples and deep-blue eyes and a sparkle that my friend Alex Molotkow described as “Glinda-like” (as in, The Wizard of Oz), which is incredibly accurate. But she was beautiful primarily because of her spirit, her empathy, her radiance and charisma, all of which was instantly evident to anyone who met her. Her friends are mourning, privately and on social media, but what’s striking is the number of journalists who are also mourning, people who interviewed her for only about an hour, an hour they remember intimately with deep affection. Because you didn’t forget a conversation with Teva Harrison.

In 2017, I was writing a biography of Gord Downie, who had decided to do a final tour with the Tragically Hip after being diagnosed with terminal brain cancer. Downie had only given one interview in the last two years of his life. I didn’t (yet) know anyone living with a terminal disease, and I wanted to talk to Teva about her book and the act of being very open about living with an incurable disease. Downie’s act was so unusual because most people retreat into the shadows after such a diagnosis; Teva’s work questioned what we as a society suffer when we let people just disappear, when we refuse to talk about disease and our own mortality, what we try to consciously ignore. Downie’s act was one of defiance, and millions of Canadians were swept up in his journey. Teva’s work was equally defiant, and considerably more candid and explicit.

I had no idea if she had any strong feelings about Downie and his work, but I asked her if she would talk to me about discussions of death in the public sphere. I also wanted to gain some insight into an intensely creative person determined to “use it up, use it all up,” as Downie’s hero Raymond Carver wrote during his own terminal diagnosis.

In 2016, Teva had told Chatelaine’s Katie Underwood, “I don’t want to talk about cancer all the time. I want to talk about art, books, culture and politics — the same things I was interested in before. I don’t feel like a dying person, so I’ve had a hard time getting into the mindset that that’s essentially what I am. But not yet.” And in a phenomenal speech she gave in 2016—the text of which I’d argue is even better than her book—she said, “When we have art and conversation about illness and disability, we’re giving give to a crucial part of the human experience. By listening to these voices, we can gain a truer perception of our own advantage and luck.”

I was lucky to have a chance to listen to Teva Harrsion.

I spent the summer of 2017 talking about death with other people who were watching a friend and colleague and national icon fade away in front of them. Most of our conversations ended in tears. My conversation with Teva was just as emotional and moving and funny and sad, and I felt buoyed as I left her house that afternoon, ready to see so much of the magic in everyday life that she saw all the time.

She complimented me on the colour of the dress shirt I was wearing; it was the illustrator’s favourite shade of blue. I had to confess that I wore it on purpose, because it was on the cover of her book. I knew what joy she brought to many people suffering in the same ways she was; if I could bring the tiniest bit of joy into her house in exchange for a bit of her precious, precious time, I figured it was the least I could do.

Teva Harrison
June 28, 2017
At her house near Bloor/Dovercourt

Does the Tragically Hip mean anything to you, as someone who grew up in America?

On the record (laughs)? No. But I see what they mean to other people. As a kid, they didn’t make it to where I live. I see what place they occupy for so many Canadians, and it’s amazing to me how diverse the people are who find something really meaningful in their music.

Your book came out one month before Downie’s diagnosis became public. Did the news strike you as odd or meaningful, in any way, when someone with a terminal diagnosis decides to go on tour?

It’s so different for all of us, what one person is capable of. I have a friend who has metastatic breast cancer like me, and she had no evidence of the disease for a few years. She was living normally. Then she took a hard downward slide. She’s been going through this inner conflict about, ‘Was I being able-ist, with being so vocal about being able to do X, Y and Z?’ You don’t know what someone else is capable of. There are ways to manage to still do things, even though you can’t do everything. I have to take proactive rest; I’m betting the same is true for Gord Downie. He has to factor in how many things he does in order to do the really fantastic public things he does. That’s just based on my personal experience. It’s hard, though. My book tour was hard. I’ve never been a musician, but I can only imagine that it’s more physically taxing.

How far did your tour take you, and what demands did it place on you?

I made it to Dawson City and Whitehorse and Yellowknife and Vancouver and Calgary and Edmonton and Montreal. My publicist knew I needed rest days. It was a lot, but it was worth it. It’s about deciding if it’s worth it to you, and wanting to have the experience. I didn’t want to say no to having interaction with people around the work. I expect that’s probably universal, wanting to engage in the most meaningful moments while you have the ability.

Did you watch any footage of the Tragically Hip tour, or were you remotely interested in seeing someone play it out publicly?

I didn’t, and if I thought about it that way I might have. I don’t know any of the songs, you know? All of my friends were going to shows and sobbing in parks and it was a beautiful thing that I didn’t know how to tap into, because I didn’t grow up with [the music]. It felt like a real gift to everybody who got to be there.

What do you think it meant to those friends, that they wanted to experience it publicly?

Like in all these parks and places? It was an interesting moment. It’s uniquely Canadian in a really charming way.

Whenever you have death of a beloved artist, as fans there is something very selfish about it. We want more from them. These people have given us so much, and we want another book from them, to see them in another film, we want another record.

One more show!

Yes, and this stuff last summer was a whole other level of processing, of witnessing the in-between days in front of us, and having that shared experience. ‘You want one more show? Well, now you’ve got one.’

It’s incredible, I think. I can see it as being both generous and selfish. If music was my life, I would want one more show, too, in the same way that I want to do so many more drawings and write so much more. It’s special. We don’t get that wish fulfillment often. We don’t have warning. Nobody knew that would be Prince’s last show in Toronto [in April 2016, mere weeks before he died.] I had tickets to Aretha Franklin, and she had to cancel [Franklin died a year later].

You write about how, for the first year, you didn’t tell anybody about your diagnosis who didn’t need to know. Did you have any trepidation about talking about it so publicly?

I did. When I started doing the work that turned into In Between Days, it was really just for me. It was a way of processing. I think I’m lucky in that I was raised by people who believe deeply in doing things that have some positive outcome or benefit to the community. [My family are] socialists from way back! When people suggested to me that the drawings might be helpful to other people, I thought about it a few ways. I thought I could have only a tiny bit of time left. What am I afraid of? How is being public going to make it worse? Whatever I was afraid of was just gone.

Before this happened, were you a very private person?

I’ve always been more private with the dark stuff. Which is not unusual, and social media encourages us to share the good stuff and keep the rest to ourselves. I’ve never felt like people needed to know the bad parts. Then I was in a position where it was so bad, so dark, and I was so sad, and I felt alone with my feelings. That’s one of the reasons I wanted to share the work, because I thought if someone else is feeling alone with their feelings and they happen to pick up my book and it makes them say, ‘Yeah, me too!’ then maybe that’s worth it.

You are—no offence!—of limited celebrity. What do you think it means when someone who plays a large role in the culture goes public in such a performative way?

We don’t talk about it. There is benefit to this being more public. I don’t consider myself a celebrity at all! I feel fantastic and honoured to have written a book, but that doesn’t make me as public a person as someone like Gord Downie. I’m sure you’ve read Susan Sontag’s Illness as Metaphor, about the way we kept silent, as a culture, about cancer. You know, [doctors] didn’t even used to tell people who were diagnosed that they had cancer, because they didn’t want [the patients] to worry about it, and [doctors] knew they were going to die anyway. But not talking about something doesn’t make it less scary, it makes it loom larger.

You’ve said, “We’re encouraged to slip away because people generally prefer it that way … What is lost when we allow sick people to disappear?” What do you think society loses when we don’t acknowledge illness?

I think we lose the depth of the human experience. How can we live with only one side? The extremes of emotion—extreme joy and extreme grief—are where our deepest commonalities exist, no matter where that joy or grief comes from. That’s where we meet. By not talking about it, we are limiting the depth of our connections with other people, our own opportunities to feel and live. But I also think we lose the stories and knowledge and experience of a person. We don’t have as much of a sit-around-and-tell stories culture. Maybe that’s part of why Gord Downie being so public is so meaningful to people, because he’s a major national storyteller, one of Canada’s biggest. That warm invitation that storytelling gives, that foundation of community, is part of what we’re losing, part of what we’re trying to hold on to.

During that tour, there were many lines scattered throughout his work that suddenly made our ears perk up. It had always been there. You talk about being on the subway and suffering invisible pain; if you had crutches or something, people would offer you a seat, but nobody knows your story.

Having illness in the public sphere creates compassion, because we can never know what these hidden stories are that everybody has. It could be depression, it could be your organs, it could be anything that doesn’t manifest itself on our exterior shells, and we’re trained not to look beyond the surface. But the more these stories are shared, we can build compassion. Not even medical stories: you don’t know what’s happening in people’s lives, or how they came to live in this city, what they’ve lived through. [We go on a tangent about Kathleen Hanna and Lyme disease, another invisible ailment.]

You found a lump and went to the hospital. Do you think you could have been diagnosed earlier?

I try not to dwell. I applied sometime before for the Ontario early detection program, because of my family [history]. But [the cancer] wasn’t first-generation, and I came three points short of their algorithm to get an early mammogram. I had early ultrasounds, which are supposed to be good, but they didn’t catch this. It’s possible that if I had access to more specific tests that it might have been caught earlier. Misdiagnoses happen even more often when we’re younger. We’re not put through the same level of tests older patients are put through. It’s why I slipped through the cracks. It wasn’t found until I was Stage 4.

Is there an age at which it’s automatic?

Yes. I think it’s fortysomething. But we have no idea how long I was walking around with cancer.

Breast cancer is so common I can see why there would be routine tests. But I can’t imagine there is for brain, colon, oral cancers.

No. It can take a long time to figure out what’s wrong with somebody. Some cancers are really sneaky. Pancreatic cancer hides, and is difficult to diagnose. [Note: pancreatic cancer is what took Sharon Jones.]

You’ve said you have “more hunger for life and experiences,” and you write, “I really have nothing to lose. So I am going to say yes even more. Live like a tornado, when I can. I’m going to suck the marrow out of life and see what I’ve been missing.” When you talk to people in public forums, do you hear the flip side of that? Can it give people a complex or worry that they’re not doing enough?

I don’t think it’s a flip side. I think it’s connected. I feel like that feeling that you’re not doing enough drives you to do too much, or as much as you can. I’m about to have a show at the Winnipeg Art Gallery, I’m working on a new art project, I’m writing another book, I’m writing a cook book, I’m collaborating with Jordan Tannahill on his project—you know? It’s frantic.

Why do you think that is?

Because I thought I had a lot more time to do it all. Sometimes people say, ‘I don’t know how you do it. I could barely get here today.’ Sometimes I’m that person who can barely do it. It depends what you’re willing to do, and how important it is to you. Obviously there are times when you simply can’t, when you have mobility issues, for example. My palliative care doctor gives me Ritalin to use if I have a speaking engagement and I’m so tired I can’t do it. It’s not ideal, but there are ways to fake it.

Regarding pain medication and opioids, as a creative person, how do these palliative medicines affect your creativity?

Not anymore. The opioids don’t have the same effect they had in the beginning. They just take away pain now. In the beginning, if I suddenly had to dramatically increase my dose, I would experience that again, but it’s so gradual now. In the beginning I had problems with it moving around so dramatically; it was trying to find the right levels and the right drug combinations. I also use medical marijuana, and that’s more likely to take away some of my [creative] impetus. But sometimes I have to eat! [Cannabis increases appetite.] It’s a very strange thing. I used to not be a person who liked to take pills for things. I liked to be really clear. I’ve had to accept that it’s part of the recipe for getting through the day. It is interesting how the body changes, how you slide into new normals.

I hear a lot of creative people, many of whom have mental health issues, who worry about prescribed drugs dulling that edge, not allowing them to access the parts of their brain that are so brilliant. But you’re saying that was more of a hump in the beginning.

Yeah, but it will come up again. When there are changes to my status with my disease, I had some progression and the tumour in my liver grew to the size where it was pressing against both my stomach and my ribcage. It hurt so much that for a while I had to double my opioid dose, and for that period of time I was barely a person. That was just a few months ago. It’s shrunk back down with a new treatment. You have to be highly adaptive. If you’re not able to roll with it, it could make you crazy. You have to accept that it’s difficult.

[Teva wrote an incredible essay about her medicinal use of fentanyl for The Walrus here.]

You’ve talked about rest being a torment, as white noise that accumulates until you require a creative release. Do you think that’s common, or unique to you as a creative person?

I think it’s a common experience, but then again I haven’t had a lot of people echo it to me. A lot of people talk to me about anxiety, though, and that’s a facet of anxiety. Almost everybody I’ve been close to who had cancer has talked about their anxiety and how they manage it. Whether or not they describe it as white noise, there is something that is pressing.

Did you have that before your diagnosis?

I had it before when I was not in the right place, if that makes sense. When I make choices or not be doing enough creatively. I don’t experience as much white noise as when I’m successfully creative.

I’ve heard Gord Downie talk about this a long time ago, before any of this, about how in between records or writing spells that this hum just builds in his head until he starts writing.

That’s exactly it! It’s like off-gassing.

You’ve said that opioids take the pain from a level 7/10 to a level 3.

Yes. But it’s a bit of a misrepresentation. I regularly get chided from my palliative care nurse for undermedicating myself. [The state of having] fully no pain leaves me a little cloudy. To get to that point I’d have to take so much more, to get to the point of no pain. Then I’d need that much just to get to 3 again. There are strategies around switching which opioids you’re taking for a period of time to resensitize you so you can stay on lower levels. That’s to avoid some of the side effects of opioid use, like constipation and sluggishness. I take a little bit less than I probably could, but not necessarily should. I don’t think I would value my time as much if it was just passing by. Maybe I wouldn’t care as much.

I’m sure some people do that.

And there’s nothing wrong with that, nothing at all. I’m sure my nurse is right when she says I should be feeling no pain.

I’ve been reading a novel by Hugh McLennan, The Watch That Ends the Night, and in it there is a character who’s had a brush with death, and it’s up to her husband and her lover to decide whether to risk a medical procedure to extend her life. They decide that she “must be enabled to live her own death,” because “her life isn’t completed yet. She wants to paint more pictures.”

It’s a strange pivot. I’m 3½ years into this, and I’m still not reconciled. It makes me understand why they didn’t tell people [they had cancer]. It changes how you live. In some ways for the better, in some ways for the worse. You’re simultaneously living your life but engraving your own death. Which feels like it should negate itself in a way. 

There’s a positivity in your book, yet fully acknowledging the dark and imminent end.

That’s part of why the subtitle is “living with cancer.” Because it’s not about dying. It’s a book about getting life-altering, heartbreaking news and figuring out how to move forward and still live with joy and with wonder. And getting the most one can out of what’s available. In a way, [my husband] David and I are lucky that we don’t have kids, because it means we can do things now that we probably wouldn’t be able to do. We can spend money going on amazing trips. Whereas a lot of people I know who are living with late-stage cancer are also living with a lot of debt or responsibility with their kids, all of these things that are also wonderful—kids, more than debt (laughs)—but are potentially hindering their ability to live their death out in a fully beautiful way, to the best of their potential. That to me is really heartbreaking. I do think that making dialogue wider and getting people talking more will make it more possible for people to speak up for themselves, even in the context of their own relationships, to self-advocate.

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