Filmmaker Faces Her Father's Mortality By Staging His 'Death' Again And Again

19 hours ago

When Kirsten Johnson's dad started showing signs of dementia, she had a hard time accepting the fact that his death was getting closer. So she decided to make a movie about him.

Johnson's new Netflix documentary, Dick Johnson Is Dead, tells the story of moving her dad out of his home in Seattle and into her apartment in New York. It also enacts her father's death from imagined accidents, like getting hit in the head by a falling air conditioner or tripping on a crack in the sidewalk.

Johnson has worked as a cinematographer for over 50 documentaries, and has directed seven movies, including Cameraperson and the short film The Above. She says her father laughed when she pitched the idea to him.

"Ever since I was pretty little with my dad, we have kind of amazing conversations about all kinds of things. ... He was not particularly interested in being the center of things, but he was absolutely interested in doing something with me full time, spending time together, watching movies together, making something funny together."

The first "death" they filmed was at home, on the staircase where Johnson's late mother, who had Alzheimer's disease, once broke her hip. It was a powerful moment.

"To see my 84-year-old father, like, laughing — but also just the vulnerability of him laying himself out at the bottom of the stairs because I had asked him to — both made me question the entire idea and also say, ' Woah, this is potent,' " Johnson says.


Interview highlights

On coming up with the idea of filming her dad's death over and over again

One of the primary places this came from was the experience we had making my previous film Cameraperson and this wonderful editor I work with, Nels Bangerter, he placed a shot of my mother alive after a shot of her ashes in a box. And it so startled me, I really had the impression that she came back to life. It was like, "Oh, right, cinema can do this!" ... So that was part of the origin story.

"He was not particularly interested in being the center of things, but he was absolutely interested in doing something with me full time," filmmaker Kirsten Johnson says of her dad's appearance (as himself) in Dick Johnson Is Dead.
Netflix

And then, of course, I had a dream. I'm like a big, vivid dreamer. And I had a dream in which I saw an open casket and a man who wasn't my father sat up and said, "I'm Dick Johnson and I'm not dead yet." And it just clicked something in me, like, "Wait a minute! My time is running out with him." So those are a couple of places that the idea bubbled from, I would say.

On why she initially wanted to have the deaths be big stunts

[Initially] I wanted big stunts. I wanted him to catch on fire. I wanted to put him out on an ice floe. I wanted Jackie Chan to help us, because I really was interested also in this role of the stunt person. ... I like to think of every member of a team or a crew having insights into the project that go unnoticed, unrecognized, unquestioned. So I started thinking about stunt people and death like that they're literally risking their own lives on behalf of being invisible in a film — and for all of us to take it lightly on a certain level. Like, oh, that movie star didn't just die, of course. But we're not thinking of the person who had to catch themselves on fire and, like, fall out of a building. So I did want to do big stunts. But then once we started to do them, it became really clear that my father's dementia was such that it would be really hard to do those stunts. And then suddenly the realization of, well, this probably is the more likely way that he would die.

On the emotional experience of making the film

Our own emotions are so deeply unexpected. ... One of the first huge surprises for me was after we did the funeral [scene], I woke up just so depressed the Monday after we did the funeral. And I realized, some part of me had completely convinced myself if we did the funeral really in the church with my dad's friends, he would never die. I really realized, oh, that's what I thought I was doing.

On how she sees dementia changing her dad's personality

It's doing so many things to him. He is distilled to his essence, which I would say, he can call me multiple times in a day and simply say to me, "I'm just checking to see if you know that I love you." And that is who he has been in my entire life, just affirming that. All of these words are applicable. I do think the loss of his capacity to have an extended conversation, an analytic conversation — it's a profound loss for him and for me.

My biggest conundrums, the most challenging problems for me, I could go to my dad and just say, "I want to lay this out for you and I don't understand why I'm behaving in this way. I don't understand what's happening." And he could just, like, break it apart and ask questions. Never, never, judge, never give me even advice, just ask questions that then allowed me to think, OK, I see what's going on here.

And so that I have definitely lost and he has definitely lost. But, every once in a while I can still come in with a question and he'll just go deep analytic and be right in there for the length of that question. So in some ways, it's taught me new ways to think and talk and interact with him.

Heidi Saman and Kayla Lattimore produced and edited the audio of this interview. Bridget Bentz, Molly Seavy-Nesper and Beth Novey adapted it for the Web.

Copyright 2020 Fresh Air. To see more, visit Fresh Air.

DAVE DAVIES, HOST:

This is FRESH AIR. I'm Dave Davies, in for Terry Gross. Today we're going to listen to an interview our producer Sam Briger recorded with documentary filmmaker Kirsten Johnson. I'll let Sam introduce it.

SAM BRIGER, BYLINE: Our guest Kirsten Johnson has a new documentary coming out on Netflix at the end of the week. It's called "Dick Johnson Is Dead." Dick Johnson is her dad, and while he's not dead, he's 88. The movie is about how they are both coming to terms with his dementia and with his inevitable death, and it's also a loving tribute to her dad's life.

In order to help process his death, Johnson stages various accidents where her father dies, like getting hit in the head by a falling air conditioner unit, tripping on a crack in the sidewalk or falling down the stairs. And her dad acts out his demise in each of these staged accidents. The film is also about Johnson helping her father move out of his home and end his psychiatric practice in Seattle, so he can live with her in her one-bedroom apartment in New York City. Johnson's mother died from Alzheimer's disease in 2007.

"Dick Johnson Is Dead" is the seventh movie Kirsten Johnson's directed. She's also been the cinematographer for over 50 documentaries, including "Citizenfour," "Pray The Devil Back To Hell" and "The Oath." In her 2016 movie "Cameraperson," she took spare footage from her decades of work in documentaries and edited them together and called it her memoir. I spoke to Kirsten Johnson on Monday from her home in New York.

Here's a clip from "Dick Johnson Is Dead," where Kirsten and her dad are talking about his memory.

(SOUNDBITE OF FILM, "DICK JOHNSON IS DEAD")

DICK JOHNSON: I don't really notice a big problem with my memory. I think it's more apparent to people around me than it is to me.

KIRSTEN JOHNSON: You do experience worry that you'll be a burden.

D JOHNSON: Yeah.

K JOHNSON: What does that mean to you?

D JOHNSON: Nothing much more than it says. I - you know, if I sort of - I'm living with you now. And I - for you, you know, it might get worse, you know? You might have to take care of me more than you do now. But, I mean, I like living with you, so I'm not terribly worried about it (laughter).

K JOHNSON: Do you have any - I mean, there's some people who feel like if it gets worse, to a certain place, I don't want to live.

D JOHNSON: Oh, I love life too much for that.

K JOHNSON: So you - would you - you would be interested in living to the state that Mom was in, where she couldn't communicate?

D JOHNSON: Yeah, I think so. But I give you permission to euthanize me (laughter).

K JOHNSON: At what point do I have permission to do that?

D JOHNSON: Well, pass it by me before you do it.

BRIGER: That's a scene...

(LAUGHTER)

BRIGER: That's a scene from "Dick Johnson Is Dead." And you hear Dick Johnson there and his daughter Kirsten Johnson, who is the filmmaker. Kirsten Johnson, welcome to FRESH AIR.

K JOHNSON: Thank you, Sam. I'm just laughing because that really is my dad...

(LAUGHTER)

K JOHNSON: ...In all of his twists and turns.

BRIGER: Yeah. So how did you come up with the idea of making this movie, where you kill off your dad in all these various accidental deaths?

K JOHNSON: I'm the most easygoing person in the world, and then I'm also, like, completely oppositional. So I never like to think of ideas of - as happening in one moment or coming from one place.

So one of the primary places this came from was the experience we had making my previous film, "Cameraperson." And this wonderful editor I work with, Nels Bengerter, he placed a shot of my mother alive after a shot of her ashes in a box, and it so startled me. I really had the impression that she came back to life. And I just - it was like, ah, right, cinema can do this, you know? Vertov does it in "Man With A Movie Camera," where you go from a still shot of an old woman to her suddenly moving, and it's just this affirmation of what cinema can do.

So that was part of the origin story. And then, of course, I had a dream. I'm, like, a big, vivid dreamer. And I had a dream in which I saw an open casket, and a man who wasn't my father sat up and said, I'm Dick Johnson, and I'm not dead yet. And that just felt like - it just, like, clicked something in me of, like, oh, wait a minute; my time is running out with him.

BRIGER: And then how did you broach the subject with your dad?

K JOHNSON: Ever since I was, you know, pretty little with my dad, we have kind of amazing conversations about all kinds of things. But we're both really interested in psychology, and we're both really into novels and movies and sort of talking about, like, how is it that people behave this way or that way. And I often will tell him my dreams, and I told him I had that dream and that it had given me this idea that maybe we could do his funeral before he really died. And also that - could that be a movie in which he died and came back to life, and we could just keep doing it until he really died? Like, we'd have this project together for the rest of his life. And he laughed (laughter).

BRIGER: And - yeah, was he game? (Laughter) He was like, yeah, OK, cool?

K JOHNSON: He - I mean, he kind of was, honestly. He was just like - I mean, I would say he is a modest person. And, like, he's right in some ways - he's like, my life's not that interesting.

(LAUGHTER)

K JOHNSON: What's going to happen in this movie? And I was like, well, you're going to unexpectedly die, so that'll be interesting. But he was not particularly interested in being the center of things, but he was absolutely interested in doing something with me full time, spending time together, watching movies together, making something funny together.

BRIGER: I have to say, when I watched the movie for the first time, you know, I was home on my computer as - where we watch movies these days. And your dad's walking down the street, and an air conditioner falls on his head. And I knew it was - that was going to happen, but it totally took me by surprise. And I jumped out of my seat, and I started yelling.

(LAUGHTER)

BRIGER: I was not prepared for that.

K JOHNSON: You yelled?

BRIGER: Yeah, I yelled. I was like...

(LAUGHTER)

BRIGER: Yeah. So why did you choose accidental deaths? Like, there's a scene where you're talking to a stunt person about, like, all the various ways he could enact your dad's death, and he sort of is suggesting, like, a stabbing situation. You're like, well, we're not really trying to do that; we're trying to do these accidents. Like, why was that what you wanted?

K JOHNSON: Well, accidents happen, right? And there is a way in which - there's a part of me that is the part of me from "Cameraperson," where I have, like, this profound respect for other people's suffering.

And, you know, when I think back over the course of my life and the many tragedies of people in the world I have encountered, you know, of terrible accidents happening to them or to their children or to their parents, and, you know, people are just devastated for the rest of their lives because something just, you know, like, could have been changed by an inch and it wouldn't have happened, right? And then that sort of creates that desperate if-only-I-had feeling. And it's reliable. The unexpected is reliable.

BRIGER: So this is the more likely way that he was going to die probably, then, right?

K JOHNSON: Yeah. I mean, what I initially wanted - I wanted big stunts. I wanted him to catch on fire. You know, I wanted to put him out on an ice floe.

(LAUGHTER)

K JOHNSON: I want - you know, I wanted Jackie Chan to help us because I really was interested also in this role of the stunt person because, like with "Cameraperson," there's this sense that there's this invisible world of people who help make things. And so I started thinking about stunt people and death, like, that they're literally risking their own lives on behalf of being invisible in a film and for all of us to take it lightly on a certain level, you know? Like, oh, that movie star didn't just die, of course, right? But we're not thinking of the person who had to catch themselves on fire and, like, fall out of a building.

And so I did want to do big stunts. But then once we started to do them, it became really clear that my father's dementia was such that it would be really hard to do those stunts. And then, suddenly, the realization of, huh, wow, well, this probably is the more likely way that he would die. And, honestly, the first stunt we did was at home - me and him just messing around and looking at the staircase where my mother had fallen. And unbelievably, she broke her hip. And we didn't know it. She had Alzheimer's. So that same staircase that had taken her down, you know, I was like, Dad, will you, like, lie down at the bottom of it? And once he did that - like, to see my 84-year-old father, like, laughing, but also just the vulnerability of him laying himself out at the bottom of the stairs because I had asked him to, both made me question the entire idea and also say, wow, this is potent.

BRIGER: You say in the movie that you thought enacting his death would help you prepare for when it really came. Did it work that way?

K JOHNSON: (Laughter).

BRIGER: Or was it also, like, a distraction for you and him, like something to do together?

K JOHNSON: So one, like - you know, like documentary filmmaking, like death, emotions are so deeply unexpected, right? Our own emotions are so deeply unexpected. And as a parent, I'm always having these moments just like, why is this enraging me?

BRIGER: (Laughter).

K JOHNSON: Like, you know, just - it'll just thwack you out of the blue. Like, you know, I got so mad at one of my kids because they weren't trying. Why did that matter so much to me, you know? And one of the first huge surprises for me was after we did the funeral, I woke up just so depressed the Monday after we did the funeral. And I realized, like, some part of me had completely convinced myself if we did the funeral really in the church with my dad's friends, he would never die. Like, I really realized, oh, that's what I thought I was doing.

BRIGER: The movie is also about, you know, having to move your dad out of his house - this is the home outside of Seattle where you grew up - getting him to shut down his psychiatry business and moving him into your apartment in New York, so all the way across the country. What precipitated that decision?

K JOHNSON: We eased into knowing my mom's dementia. It took all of us, I would say, a couple of years before we all finally admitted it to ourselves. My father and mother were living together. And I was traveling. And I was, you know - I was in Sudan and in Liberia. And I would come home. And I'd be like, what's this doing in this cupboard, you know? - that kind of thing. But Mom would really put on a pretty great (laughter) performance whenever I or my brother would come home. And my dad would go to work and not always realize what she was up to during the day.

But the same thing started to happen with my father where I'd just be like, that's funny. I thought he mentioned that already. But then his secretary called. And she said, you know, Dr. Johnson has double-booked a patient again this week. And he never does that. And she said, the pharmacy called. And I think there's an issue with one of the prescriptions. So that was just, like, very serious news. And then, you know, comes the crazy story of he got off at an exit and somehow arrived home with four flat tires. Well, it turns out he drove through a construction site.

And we got one of our friends, one of our neighbors, to figure out, like, where he had been and what had happened. But it was a little bit of detective work. And then he sort of laughed it off. And it just was - it was just, like, an odd story you couldn't quite vet, you know? And there started to be more and more things like that until, suddenly, it was just like, oh, this is happening. But we did get - a friend and his son were looking for a place to live for a while. So they moved into the house with dad for a couple of months. And they totally verified, yeah, things are not right.

BRIGER: Well, Kirsten, let's take a short break here. Kirsten Johnson is our guest. We're talking about her documentary "Dick Johnson Is Dead," which comes out on Netflix at the end of the week. She'll be back after a break. This is FRESH AIR.

(SOUNDBITE OF ARCTIC MONKEYS SONG, "DO I WANNA KNOW?")

BRIGER: This is FRESH AIR. We're speaking with documentary cinematographer and filmmaker Kirsten Johnson. Her newest film, "Dick Johnson Is Dead," comes out on Netflix on Friday. It's a loving tribute to her dad, who is actually still alive, but whom she kills off in various ways during the movie.

There's a scene I'd like to play. I think this happens in a lot of families where someone has gotten too old to drive. And clearly, in your dad's case, like, he - you know, as you said, he got home with four flat tires. Like, fortunately, he didn't hurt anyone. But this is the confrontation where he's realizing that he's no longer going to be able drive. And that's really tough for some people to take. So let's just hear that clip.

(SOUNDBITE OF FILM, "DICK JOHNSON IS DEAD")

D JOHNSON: You never said you were taking the car away from me.

K JOHNSON: It was said that we were selling the car because you're moving to New York.

D JOHNSON: Yeah. It was said, that.

K JOHNSON: Right. That's all.

D JOHNSON: But who's selling and when and where?

K JOHNSON: It's put - being put on Craigslist this week. It's at the repair shop being finished right now. I'm telling you but - (laughter). But you're not getting the car back. I do know that.

D JOHNSON: I'm never driving it again.

K JOHNSON: No, not that car - maybe some other car. Is that the worst news ever?

D JOHNSON: Not the worst, but that's pretty bad news.

K JOHNSON: Yeah.

D JOHNSON: You know, I'm not far enough gone that I couldn't drive my own car, you know?

K JOHNSON: Well, it's not about that. It's about the fact that you're moving to New York.

D JOHNSON: Yeah, I know.

K JOHNSON: You can't keep your car.

D JOHNSON: I'm not taking my car. I know that.

K JOHNSON: That's right. That's all.

D JOHNSON: But in between now and the time...

K JOHNSON: It's only a couple of days.

D JOHNSON: OK.

K JOHNSON: Sorry. I know it hurts. It's your independence, isn't it?

D JOHNSON: Yeah.

K JOHNSON: Yeah.

(SOUNDBITE OF HAND PATTING)

K JOHNSON: It's going to be OK.

(SOUNDBITE OF HAND PATTING)

D JOHNSON: Well, I know how mom must've felt going to the nursing home.

K JOHNSON: Is that what it feels like?

D JOHNSON: It's not that bad.

K JOHNSON: It's not that bad.

D JOHNSON: Not that bad.

K JOHNSON: It's not that bad.

D JOHNSON: It's not that bad, but that was bad.

K JOHNSON: You're a little more conscious than she was then.

D JOHNSON: Yeah. But you're not giving me credit for much more consciousness (laughter).

K JOHNSON: Yes, we are. Stop it. We're just not paying $2,000 to put a car in a rental car garage in New York City. That's all.

D JOHNSON: That's all, yeah.

K JOHNSON: That's all we're doing.

D JOHNSON: I hear you.

K JOHNSON: You hear me?

D JOHNSON: Yeah, I hear you.

BRIGER: That's a scene from "Dick Johnson Is Dead." And filmmaker Kirsten Johnson is our guest. Kirsten, that's - you know, that scene really teared me up when I watched it. And the thing that the listener is not seeing is your dad is literally putting a good face to this situation. Like, he keeps kind of smiling. He's really trying to, you know, accept the situation. But it's really hard for him. And I love what you're doing there. Like, you're really trying to soften the blow, you know? You're like, well, we're just not going to pay for the car. Like, we're moving to New York. You don't use cars in New York, you know?

K JOHNSON: (Laughter) Right?

BRIGER: Like - and you do that a lot. It's just a really sweet way to handle this really hard situation, I think.

K JOHNSON: As somebody - one of the people working on the film was saying to me, you sure you're not from the Midwest, you two? Like, you're just try - like every - you're just always trying to make each other feel better about all (laughter) of this. And that is certainly true, you know? I mean, I think because we went through it with my mom, we both know what's coming. So it's so brutal what's coming that we both, I think, would be like, we're not there yet. It's not that bad, you know?

And, of course, I'm, like, trying all these tactics. Like, my dad notoriously does not want to spend large amounts of money for things. So I was just like, it's $2,000 to have a parking garage in New York (laughter), you know? Like, he's like, oh. In that case, we don't want the car there, you know? So I do try all kinds of tactics.

And yet - you know, I have a dear friend, Carol Dysinger, whose mother had dementia. And she said to me - when my mom started to get it, she said, you know, some of these decisions you make too early or you make them too late. And that's how she got me to take my mom's driver's license away from her, because I was like, oh, right. My mom could run someone over. But then my mother never forgave us for taking away the driver's license. She was so mad about that all the way, like - after she'd forgotten everything (laughter), she was still mad about that. So I was really scared to get my dad to stop driving. And I didn't know how I was going to do it.

BRIGER: Something I was wondering about - their reaction to things. Like, have you thought about the ways that your mother and your father reacted to these similar illnesses? Like, I don't know if your dad has been diagnosed with Alzheimer's disease. Or is it just dementia? But have you thought about the different ways that this either altered their personality or just the way they reacted to losing their memory? And...

K JOHNSON: Oh, yeah. I mean, I think about it all the time (laughter).

BRIGER: Yeah.

K JOHNSON: I've started thinking of, like, what part of dad's dementia is connected to the specificity of his personality, you know? He's just, like, an extraordinary listener, able - in the first few moments with that first stunt person that we see in the film, Mike, he gets right at the question between - behind, why are some people, you know, risking their lives on behalf of movies? And is there despair? Are there thoughts of suicide? Is there alcoholism? You know, he just, like, gets right in there with him immediately.

BRIGER: Yeah. Yeah.

K JOHNSON: And that's the kind of thing that my father could do. And so that kind of incisiveness about his own dementia has just been remarkable. And so the way he sort of flips on a dime and is thinking about himself in that scene with the car, but then he's also saying to me, I'm sorry for you that you have to go through this moment of taking away my independence - right? - which he does often.

BRIGER: So do you see, like, an erasure of your dad's personality? Or do you see it, like, as a crystallization of him? Like, how do you come to understand what this illness is doing to him?

K JOHNSON: It's doing so many things to him. I mean, he is distilled to his essence, which I would say, you know, he can call me multiple times in a day and simply say to me, I'm just checking to see if you know that I love you. And, you know, that is who he has been (laughter) my entire life - right? - just affirming that. All of these words are applicable. I do think the loss of his capacity to have an extended conversation, an analytic conversation, it's a profound loss for him and for me. I mean, my biggest conundrums, the most challenging problems for me, I could go to my dad and just say, like, I want to lay this out for you. And I don't understand why I'm behaving in this way. I don't understand what's happening.

And he could just, like, break it apart and ask questions - never, never judge, never give me even advice, just ask questions that then allowed me to think, oh, OK. I see what's going on here. And so that I have definitely lost, and he has definitely lost. But every once in a while, I can still, like, come in with, like, a question. And he'll just go, pshh, deep analytic and be right in there for the length of that question so I can get it, you know? So in some ways, it's taught me new ways to think and talk and interact with him.

BRIGER: If you're just joining us, I'm speaking with Kirsten Johnson, whose newest film, "Dick Johnson Is Dead," comes out on Friday on Netflix. It's a loving tribute to her dad, who's actually still alive but who's dealing with dementia. Johnson's been a cinematographer for over 50 documentaries. More after a break. This is FRESH AIR.

(SOUNDBITE OF ALLISON MILLER'S "SHIMMER")

BRIGER: This is FRESH AIR. I'm Sam Briger, sitting in for Terry Gross, back with our guest Kirsten Johnson, who is both a documentary cinematographer and a filmmaker. Her newest film, "Dick Johnson Is Dead," will be available on Netflix this Friday. It's about her father who is actually still alive but whom she kills off in various accidents during the course of the movie to help process what it'll be like when he actually dies. It also deals with his increasing dementia and his move from Seattle to Johnson's apartment in New York. Johnson's previous film was "Cameraperson."

I'd like to talk to you a little bit about "Cameraperson," your film from 2016. And you call this film a memoir. Could you describe it? Is this all footage of things that didn't make it into the movies that you were a cinematographer for?

K JOHNSON: Not exactly. I - so "Cameraperson" for me was a process which came out of - you know, I've worked as a cinematographer for about 25 years at that point and had been in just some extraordinary places in the world with people who had lived through - mostly who had lived through powerful times. You know, I've filmed in the regions of five different genocides. And I hit this point where I think I was just saturated with this sort of human experience by proxy. And I started having trouble remembering things, and I think, you know, it was happening around the same time as my mother's dementia, so I was really - felt connected to her. But I was just like, wow, I don't even know where I was yesterday. And it would have been like, oh, I just got back from India and I was on my way to Kansas City. And I couldn't - I was like, where was I last week? And so I just started to wonder what was going on with my memory. And I was making a film with a young woman in Afghanistan and had almost completed it when I showed it to her, and she said, oh, I can't be in this film anymore. It's too dangerous for my face to be seen in this film now given the political context in Kabul. And I just shocked me. I was like, what am I doing? Like, how did I not realize that that was coming in the making of this film? And so it just feel like I had this world of blind spots.

And I started to go back to footage that sort of haunted me. I slowly started to accumulate this set of material that were my questions, my questions about humanity, my questions about the work. And I wondered if I could put them all together in a film because, you know, there was so much span of time, spectrum of places, different kinds of footage, but what united them all was that I had been there. I had been there with a camera. And I had been there sort of questioning and searching. And my encounter with making those images with the people there stays with me. I am haunted. And so it was like, OK, how do I go back into understanding what this is, what this work is? So we found a way to put it together without any voiceover so that you just experience it in many ways as I experienced it, with no narration.

BRIGER: Was making the movie or finishing the movie therapeutic for you?

K JOHNSON: I think no question. I think basically because in some ways I could show a mirror back to myself of how hard I was - how responsible I felt for all of it, you know. And, you know, you feel this when you're a camera person because you just - you know, sometimes you're there at the moment and you're in focus and you let, like, someone who has never - you know, like, who lives their own life but has, like, not - has been ignored by the world and shouldn't have been ignored, you're just like - you're like you're pulling a hand through and they're reaching a hand through and then they come into the world and they're visible where the world has made them invisible. And I love that. I love that feeling. And then sometimes you're just blowing it, you know. You're like, the light's terrible, and something's wrong with the sound or there's a rabbit scratching in the background like there is in my house right now. And the footage is - you know, it has its defects.

And so as a camera person, you're just like, I wish we'd start filming earlier, the light was different or - you know. But that is your way of sort of struggling with the fact, like, you're not making it better right in that moment, you know. That traumatized person - like, you shared a moment with them. Yes, you've filmed them. Maybe someone else is going to watch the film, but, like, that thing still happened to them. They're still living with this thing that happened to them three decades ago, that they still can't sleep at night. And they're not going to - you know they're not going to sleep again tonight, you know. So the feeling of I would love to make this world different and yet I am so inadequate, that feeling, you know, I was going there so much. And then with "Cameraperson," I realized, like, yeah, and also, you know, it's not all yours to do.

BRIGER: In the movie, you say that you don't have any footage of your mom before she was diagnosed with Alzheimer's and, you know, you said that filming her in that state felt like a betrayal. Can you explain what you meant by that?

K JOHNSON: My mother was just this extraordinary woman with a lot of capacity. She was very fun. She was really interested in other people's welfare. She was really interested in aesthetics. She cared about how she dressed. She cared a lot about what other people thought of her. But, like, in terms of her religious beliefs, she was really trying to be a decent person. So if she was going to be seen or transformed into an image, she wanted it to be sharp. And I knew that about her, and she was anything but sharp in the images that I filmed of her. She was confused. She was wandering. Her clothes are sort of hanging off of her. Her haircut's not great. And she's got that, you know, scared - sometimes scared, sometimes distant look in her eye. And I know she would have hated that anyone see that publicly. And, you know, when I was showing "Cameraperson," I - many people, they were like, it's so clear how much you love your mother. And then I showed it at the Seattle Film Festival and, you know, in this film, there's a woman named Joanne Tucker (ph), who we - we put her death on the screen. She's the woman who made the chocolate cake that nearly killed my dad the first time, gave him a heart attack. And Joanne's daughter saw "Cameraperson," and she said that was not your mother in that movie. She said Katie Jo (ph) would have hated this. And I said, yeah. And it just made me burst into tears because she knew my mom. Like, nobody else who'd seen the film knew my mom. But, like, she knew it was a betrayal. And it was.

BRIGER: So you worked on a film by Kathy Leichter her called "Here One Day," which is about how, after her mother's suicide, Leichter moved into her mother's house, and she's surrounded by all their mother's possessions. And there's a shot that you have in "Cameraperson" where she's sitting on her mother's bed surrounded by all this stuff, like, these paper bags full of files and papers. And she's just overwhelmed, and she starts just throwing the stuff in the corner, and she's saying, you know, I'm sick of it, I'm sick of it. And then she crawls off the bed and hides behind it so you can't see her. And she says something like, I totally don't want you to see me right now. But what do you do?

K JOHNSON: (Laughter) I walk around the bed and I go and film her.

BRIGER: And you get the shot.

K JOHNSON: Yeah. Well, you know, Kathy Leichter is just this incredibly emotionally evolved person. And she said to me in the making in this film, you know, that we spent nine years making together was you got to go the places I'm afraid to go. And at the beginning of making that film, Kathy could literally not say the word suicide. And by the end of it, you know, she's just remarkable. Her and her father and her brother talking and doing mental health work trying to destigmatize the shame around suicide - just an incredible progression of human experience. So she had basically asked me. She said, even when I ask you not to do certain things, will you do them?

BRIGER: Well, let's take another break here. I'm speaking with Kirsten Johnson, filmmaker and cinematographer. Her newest movie is called "Dick Johnson Is Dead." It comes out on Netflix on Friday. This is FRESH AIR.

(SOUNDBITE OF SAINT MOTEL SONG, "COLD COLD MAN")

BRIGER: This is FRESH AIR. If you're just joining us, our guest is documentary filmmaker and cinematographer Kirsten Johnson. So when you were growing up, both your parents were Seventh-day Adventists, and I think that one of the things that meant is that you were not supposed to see movies and television, right? But it sounds like maybe your dad snuck you in every now and then. So how old were you when you saw your first movie, and what was it?

K JOHNSON: So yeah. So, you know, these rules were always a little bit vague. Somehow we weren't supposed to see movies in theaters, but we definitely watched TV (laughter). But my dad took me to see "Young Frankenstein" at the John Danz Theatre in Bellevue. And I was totally thrilled, you know. And my favorite moment was, like, you know, such big knockers. I was like, I can't believe they're saying that. I was so excited. I was so titillated and, you know, just, like, scandalized.

BRIGER: What did your dad make of that sort of contradiction, that you weren't really supposed to see movies but you would go anyway?

K JOHNSON: You know, I think my father had great curiosity about the world. You know, he was really into jazz. He was really into reading novels. He was, you know - and there was one strand of Adventism where it was, like, you know, basically you should only be reading the Bible. There was another strand of Adventism that was, you know, quite intellectual. And my father - the church that we attended, the Green Lake church, was near the University of Washington, had a very eclectic set of people who considered themselves thinkers and, you know, would even be willing to say, OK, someone here is an atheist and let's talk about that. My mother was more conservative and more concerned about the things I would see in movies, which I would say - it was, you know, basically sex and violence she didn't want me to see. But I think about that. I think a lot about sort of the indelible image - right? - and how I have been marked by certain things I have seen that have transformed me as a person. So I don't think that my mother was entirely wrong. I think that there are things that you can see as images or in movies that change you forever.

BRIGER: So growing up, did you think of yourself as pretty devout?

K JOHNSON: I was devout. It wasn't I just thought of myself as devout. I really believed in God. I believed God could - that God knew all of my thoughts. And so, you know, this was a real internal struggle I would have where I would, like, think something, I'm like, God just heard me think that. But in Adventism, you get a choice of when you - you know, when you get baptized, you're sort of 11, 12, 13. And there's a list of things that you must say that you believe in before you get baptized. And I read it, and I was such an earnest devout kid and I didn't believe - I was like, one, how can there be God, Jesus and the Holy Spirit and there's no women? I'm just like, that's weird (laughter). And, two, I just couldn't believe we were the chosen people because I just hadn't met that many Seventh-day Adventists, and I was like, the world's a big place. Like, how are the Seventh-day Adventists the chosen people? So I told my parents. I said, God will know that I'm lying if I get baptized. And they said, you don't have to get baptized. That's the kind of people my parents were. But I think in some ways they knew I had so internalized all of the rules of Seventh-day Adventism. I was - you know, I was really keeping the rules on my own time so that even as I started to question it, you know, I didn't drink until I was in my mid-20s, you know. So, like, all of these kinds of things were things that I followed for quite a long time.

BRIGER: You said that you internalized those rules. Do those rules still come into play in your life now at all?

K JOHNSON: Oh, absolutely. I mean, I think the wish to be a decent person, that you - if you were seen in every moment, that you would be an honorable person and that you would have been decent to other people, I think that matters. You know, I just went and saw my dad for the first time since the pandemic started, and we moved him to a dementia care facility. And the woman there who is from Togo who was taking care of my dad when I went to visit him, she said, you know, I believe that God sees me all the time. And so you can trust the way that I'm taking care of your father. And I just couldn't believe it. I was like, wow, you know, she is me, and I am her. And there are some of us who have been raised to believe that we are seen in every moment, even if no one sees us, you know, even if we are doing the most humble of work and the most difficult work. You know, I think being a caregiver for someone with dementia is incredibly difficult work. So it was amazing to have that moment with her.

BRIGER: Yeah. That's also probably really reassuring to think about your father getting such good care. You know, you have a lot of dementia in your family on both sides. You know, both your parents had a form of dementia. And I think one of your grandparents may have, as well. Like, do you worry about what's going to happen to you in the future as you get older?

K JOHNSON: Well, I think the good news for me is, like, I truly believe in the unexpected. So I, like - like, it's totally predictable that I'll get Alzheimer's, so I feel like something else is going to happen.

(LAUGHTER)

K JOHNSON: But that may mean that it's going to be just, like, some colossally horrendous accident. But I would really love it if I went in some hilarious way. That would make me really happy.

BRIGER: (Laughter) Well, hopefully not an air conditioner or anything like that.

K JOHNSON: (Laughter).

BRIGER: So how is your dad doing these days?

K JOHNSON: Well, I just saw him for the first time, like I said, and he was begging me to take him home, which he - you know, I talk to him every day on FaceTime. And he's totally like, I love it here. The food's great; I'm being really well taken care of. But then when I showed up in person, he was like, please take me home; please take me home. You know, he said it on a loop for 30 minutes straight. And then - you know, I held it together and then, like, walked to the car and just, like, lost it.

And then we went back the next day, and he was like, oh, I'm so glad to see you. What are you doing here? And I took a different tact, and I really talked to him about, like, questions I had about parenting. And he basically, you know, gave me this great advice about parenting that I just need to affirm my children. Like, he's just like - he's like, everything will be fine if you just affirm them. They're going to figure out what they care about. They're going to figure out how to build their lives. All you have to do is affirm them. And so that was just like - I just was like, ah, there he is.

And then it was like all happy-go-lucky, and he, like, went inside. And then I turned around 'cause I'd brought this, like, box of things to leave for him - photos and stuff that they needed to, you know, disinfect. I turned around, and he was standing at the window, like, holding his hand at the window like, please take me; please take me. And I was just like, oh, I can't believe I just saw that image. And I'm totally - I'm like, oh, that one's not going to leave me - like, Dad just, like, scratching at the window like please let me out. You know? So it's on. It's still live and functioning.

And then, you know, he talked to a reporter yesterday about the premiere. And he's delighted, and it's going to be his birthday Friday. He's going to turn 88 years old. And he's kind of thrilled and can't believe it that, you know, Netflix and all the beautiful people there are taking him out into so many countries around the world. And so, you know, it's all things.

BRIGER: Well, Kirsten Johnson, thanks so much for being on FRESH AIR.

K JOHNSON: Oh, Sam, this has been such a pleasure. Thanks a lot.

DAVIES: Kirsten Johnson's newest film is called "Dick Johnson Is Dead." It comes out on Netflix this Friday. She spoke with FRESH AIR producer Sam Briger.

Coming up, Justin Chang reviews the new comedy "The 40-Year-Old Version," which won a directing award at this year's Sundance Film Festival. This is FRESH AIR.

(SOUNDBITE OF CLAP YOUR HANDS SAY YEAH SONG, "OVER AND OVER AGAIN") Transcript provided by NPR, Copyright NPR.