2021: Embracing Grace, Grief, and Humor

Health has never been more top of mind than during the COVID-19 pandemic. The same goes for grief. But as this year has challenged and tested our nation, we're embracing grace and humor to help us inspire new attitudes—particularly toward mental health, social connection, and the importance of resiliency.

On Saturday, January 30, 2021, our five panelists came together virtually to discuss the power of science and storytelling to influence new approaches to mental illness—and foster resiliency in these troubled times. Stream the full panel from Sundance Film Festival 2021 below.


PANELISTS

FULL TRANSCRIPT

Christena Huntsman Durham: Hi, I'm Christena Huntsman Durham, and I'm excited to be here. I'm representing our family and a little over a year ago, our family gave a landmark gift and mental health, I think it affects every single family and it touched our family. I lost my sister almost 10 years ago to a drug overdose. I think she suffered from mental illness for a long time in her life, but it was something that we didn't really talk about. I think everybody in their lifetime will suffer from mental health at one time or another. I think you are either suffering yourself or you're lending a hand and picking up somebody else that is suffering. I think it happens in everybody's lifetime.

On January 15th, we had our official launch of Huntsman Mental Health Institute, and that culminated with our exciting announcement of having Dr. Rapaport is our first CEO and we are so excited to get behind him and make this a world-class institution. I think the power of filmmaking is very strong because you can be sitting watching a documentary and be watching somebody's story and think, "That's me. I can relate." I think it makes you feel like you're not alone in the world. We are so excited with the partnership with Sundance and the University of Utah Health that you've taken the time and let us be part of the panel discussion and let us share our vision for mental health. I invite you to visit hmhi.utah.edu, for more information about Huntsman Mental Health Institute or if you or a loved one is suffering, or just need someone to listen, call the Utah Warm Line at 833-Speak-UT. And with that, please enjoy the program.

Geralyn Dreyfous: Welcome to our DIY filmmaker lodge, you're in the living rooms of about five esteemed panelists and we're going to have a very, I think, lovely conversation about resilience, mental health, storytelling, where our stories come from, what they mean, why they matter. I just want to start by thanking Christena Huntsman for welcoming us and for the extraordinary gift that the Huntsman family has made to not only our community, but also the world and really acknowledging mental health and the science that's needed and inquiry and discovery that will happen as a result of this very generous investment in new research and clinical trials and field work. Leading that effort and here in Utah for only two weeks, so a newbie to Sundance and Utah is Mark Rapaport. Mark, I want to just begin by welcoming you to Utah and our community. We're so lucky to have you, and thank you for attending your first Sundance from your office that doesn't even have your diplomas behind it, so welcome.

Mark Rapaport: Thank you very much. It's a pleasure to be here and I'm so excited to be able to participate in Sundance. You at Sundance have done so much for so many. Thank you so much.

Geralyn Dreyfous: Yes, this is the fourth year that the University of Utah Health Sciences is sponsoring Utah. Maybe the fifth year sponsoring, fourth year that we've had a conversation in the filmmakers lodge, and really this grew out of an inquiry of how do we create new narratives about medicine? If we've left the sort of information age and we were in the data surveillance capture age and biotech and data or a big piece of that capture, what are the kinds of stories that we need to be looking at and telling and thinking about and what will this new moment that we're living in really usher in, in terms of discovery in medicine and in mental health?

 

Today we have with us three extraordinary filmmakers, Kirsten Johnson, affectionately known and beloved in the documentary community as KJ, extraordinary camera woman turned director who was at the festival last year with her dad and who's with us today and actually just tags along on Kirstens shoulder everywhere she goes. Dick Johnson Is Dead.

Regina K. Scully, who's the producer of What Would Sophia Loren Do?, which is the film that recently was released on Netflix and is a love letter to her mom and her mom's resilience and Ross Kauffman, the director of that film who's also directed another short film with Regina called Still Plays With Trains, which is another look at nostalgia and memory and where imagination comes from and creativity, which is a beautiful film. Ross is going to share his film Fire with Fire, which was a short film that was sponsored by Films Forward about short stories about innovations that went on to be seen by over 20 million people worldwide and generate over a billion. I always ask him, "Are you sure that's a B and not an M?" over a billion dollars of new philanthropy for pediatric lymphoma, pediatric leukemia research it generated. It was outsourced and open-sourced to every leukemia society in the world and it was able to usher in over $200 million in federal research funds as a result and Sean Parker ended up making a huge gift to Dr. Carl June at the University of Pennsylvania to have an Institute that looked at the innovations that they did with immunology and cancer. Ross is going to talk about that.

I think we've got some clips lined up. We've got a conversation we're going to have, and we're just really delighted you're all here. KJ, in your film, you repeatedly kill your father, as you prepare for his death.

Kirsten Johnson: Out of love.

Geralyn Dreyfous: Yeah, out of love, you kill your father out of love. You said that this allows you to experience what you call anticipatory grief as your father's Alzheimer's has continued to progress, but in our COVID-19 world, we've been robbed of the ability to prepare for death. How do you envision that your experience might have changed if you weren't able to process his diagnosis in this way? And how was your experience informed? How has this experience informed your approach to the pandemic and its inevitable losses?

Kirsten Johnson: Well, unfortunately I had a dry run at it with my mother who had Alzheimer's for seven years and I experienced anticipatory grief, which I think is particular to the impact of diseases when we know a person is going to die and that we are losing parts of them, whether it be parts of their mind or their physical capacities in advance of their death. It's certainly a term that I learned during my mom's Alzheimer's. When I started to understand that my father also had dementia, I wanted to draw upon the way he had approached living. He was a psychiatrist who was really self-aware and really interested in how do we cope with mental health.

The idea that we might do something other than grieving, that we might laugh, that we might create scenarios that we could enjoy together, that we would find ways to spend most of our time together. All of those things were a way that we found to be defiant towards dementia and defiant towards death itself and also obviously the fact of creating a record was a deep comfort, because I think one of the things that happens with anticipatory grief is this terrible fear of what you are about to lose, what you've already lost and this sense of being wildly out of control in relation to what may never come back again.

When I think about that in terms of COVID, I think we now have a global collective experience in relation to anticipatory grief. There are things that we know we've lost that might come back. There are people who have died, who will not be coming back. We're all grappling with the very real reality that just randomly, we might be someone who dies anytime soon in any age category, obviously certain age categories and certain categories of people are suffering more from this disease but I think for the first time, we're all together in a Russian roulette. I would say that we've got a lot of unacknowledged grief and in some ways, I joke a lot about how we killed my father over and over in the film, but what it was really about for me in so many ways was the chance to have him come back to life and create a situation in which he could die and come back to life. It wasn't so much the grief I wanted to experience. It was the joy of him still being here.

Geralyn Dreyfous: So beautiful. We've got a clip we're going to show from that film for those who were not lucky enough to see it and it is playing on Netflix right now. It's actually trending on Netflix right now.

Kirsten Johnson: Just the idea that I might ever lose this man is too much to bear. He's my dad. Let's start walking. Just start walking to me. That's fantastic. I suggested we make a movie about him dying. He said, yes.

Dick Johnson: She kills me multiple times.

[Trailer for Dick Johnson Is Dead plays]

KJ: Action.

Dick: Resurrected dad.

KJ: But now it's upon us. The beginning of his disappearance.

Dick: The thing I hate most about my memory loss is that it hurts people's feelings.

KJ: You know that you woke up in the middle of the night last night, you got fully dressed. You remember any of that?

Dick: No. What can we do about that?

KJ: I don't know.

Speaker 2: Everybody has to sort of prepare because everybody dies.

Dick: I love life too much for that. Man, sweetie, your father is a wreck.

Speaker 3: It's just inevitable and a part of who we all are.

KJ: The fact that he's willing to keep doing this.

Speaker 3: He's doing it for you, with love.

KJ: He's doing it for me with love. He'll do anything for me. Can you just like put one arm up against the wall? Yeah, that's nice.

Kirsten Johnson: That is brutal.

Geralyn Dreyfous: So awesome. I can't tell you how many times I thought he actually did. I was gasping in different scenes. The funeral, I thought, "Oh my God, maybe he really did die." I was like, "Did he really die?"

Kirsten Johnson: Well that's the thing? That's the thing. I had such a moment of hesitation when we were trying to decide whether or not to name the film. Dick Johnson is Dead, when he was still alive. I went, "How can I do this?" and I went to my dad and I said, "Dad, what do you think about this title?" And he's like, "It's perfect. With reaction formation, I'll live forever." That's a psychiatrist joke, right Dr, Rapaport?"

Mark Rapaport: It is. But how loving. It is so loving on both your parts.

Regina Scully: That's right.

Kirsten Johnson: My father started his psychiatry career in the early fifties and it continued all the way until just a few years ago and so he saw enormous changes in the field and in the awareness of mental health, but in some ways he always doubted his capacity to heal anyone suffering with mental illness, but he would say, it's the relationship that matters. The relationship between a person and a psychiatrist. That's the only thing that might have the potential to help. When I was started making this film, I thought I was only making it about him and then I realized, in fact that it contained our relationship and the relationship of the other people in the film. I realized it sort of manifested my father's approach to psychiatry in the film. Somebody said the film gives him a chance to be a documentarian and me a chance to be a psychiatrist with no training.

Mark Rapaport: There's a lot of truth to that. The relationships are very powerful and hope is very powerful and they have real healing capacity. Part of being a healer is being able to create that relationship with the other person and the hope that one brings to somebody who's ill and it's remarkable how powerful it is. It's also remarkable how powerful humor is. It's tremendously valuable in both lifting one spirits, but also in being able to help people understand difficult things.

Kirsten Johnson: Well, it gives perspective, right? My 86-year-old father dying is the end of the world and it's also not, right? I think one of the things that was always true in the way that my father fathered me, I don't know, I can never know how he was with his patients, but he allowed me. He allowed who I was and my emotions. In some ways the fact that he would allow me to make a film in which I kill him to get a laugh then somehow gives permission, I think, for people to laugh and cry simultaneously, which I kind of didn't even know was a thing, but everyone is reporting to me that's what happens when they watch the movie, which I just find so thrilling. One of my dad's favorite sayings is when the eyes are dry, the organs cry.

Mark Rapaport: I think that's a great saying, but if you look at humor in general, and comedy in general, a lot of comedy is based out of a human experience and many times sad experiences that Lenny Bruce and other comedians were able to turn into positive things. It's also a tremendous way of communicating important lessons.

Geralyn Dreyfous: Well, and it's a way of taking ourselves less seriously, taking ourselves completely seriously and less seriously and when I think about the film that Regina and Ross and Jerilyn all made together, What Would Sophia Loren Do?, there's a sense of just... I want to embrace the absurdity of this thing that I can have this woman who was this idle for the whole world as my personal guide and that then somehow those two women would come together is such a joyous film. I think there's a way in which Regina, your mother, who is Nancy, the star of it, takes herself lightly, even though she's experienced such powerful and difficult things in her life. She wears herself lightly, certainly as does my father.

Regina Scully: Yes. Well said. I love what you pointed out that grief and joy can coexist. That's really one of the greatest gifts we can give to ourselves and to each other.

Ross Kauffman: Sorry, Kirsten, you and I have shot difficult, like war zones, right? We shot Nigeria together. Some of the most funny moments and crazy moments I've had are in the midst of these painful experiences and that's how we get through it. We've laughed a lot in these places.

Kirsten Johnson: The fact is as a camera person, I have been to 86 countries and I have filmed in, I believe five post genocide landscapes and you always find people who are hilarious. I'm not saying everybody who survives trauma is hilarious, but there are some people who are among the funniest people in the world and I feel like I could see the pattern of it at a certain point. It was like, "Wow, how are you, you? How have you lived through all of this and you can still laugh and still bring joy to other people?" That was, in many ways, part of the inspiration for my film was just like, come on. If I can't find a way to laugh at this, when other people can continue to be whole as people when everything has been stripped away from them, then really I need to check myself.

Mark Rapaport: Well, if you look at the hierarchy of defenses that was sort of promulgated initially in traditional psychoanalytic thought, humor is sort of at the top of the hierarchy of defenses and so it's one of the most sophisticated defenses that we have is being able to laugh at oneself and laugh at the world and laugh at others in a productive way.

Kirsten Johnson: That's such an interesting line, to know that it is a defense mechanism and I find that so interesting. As a person, how can we face the things that we'd like to deny that we need to face, but then also, how can we employ sort of these survival mechanisms or defense mechanisms in ways that don't erase other people's experience or erase the things that we need to take responsibility for.

Ross Kauffman: Or dimension. Yeah.

Mark Rapaport: Yeah. What you guys do with storytelling is such an effective way to communicate difficult messages. Messages that sometimes are ahead of where society is and other times dealing with some of the real tragic things that have happened in society.

Kirsten Johnson: We can't deny it. Regina, I look to you because you have been involved in literally hundreds of films that address trauma and you have a mission on that front is to sort of speak of trauma in ways that people can hear. I think there's something about the multiplicity and the difference of the projects that you've made is an acknowledgement that you can't just speak one way, you can't just tell one kind of story, that it's going to take a lot of different forms of stories to allow people to listen because I think some traumatic things, none of us want to hear so we would rather pretend that it's not happening than to listen to the stories.

Regina Scully: It's so true. Kirsten well said. I think all of us are preaching to the choir, but I'm so fascinated with the neuroscience of storytelling because that's really... We're in the neuroscience business, all of us, the arts and sciences. Absolutely. It is a marriage and it's a very powerful one and we storytellers can go where little white pills can't. They can't, right? We go into the whole limbic system of the brain. That's emotions and memories and when we tell stories, that's what we're activating. That's why music, that's why the visual arts, they go into parts of the brains that they don't even know why they don't know why music. When we play music for people who are suffering from Alzheimer's or head trauma, why do certain parts of the brain they're activated where other modes of therapy don't work, but music does and all of a sudden the person's memories are activated. We have a film melt that's called Alive Inside and it deals with all of that, music and reaching memory, parts of the brain where people can't remember, but with music they can.

So, so fascinating and I'm fascinated by that. Traumas, as I like to say, people say, "Oh God, so many films, Regina, in the area of trauma," because for me, untreated trauma is the universe. We're all dealing with forms of untreated trauma to varying degrees. and it's through the portal of trauma that we can really transform and one of the best vehicles for transformation are through our stories, because it does affect memories and emotions and it's where we can heal in very powerful ways.

Geralyn Dreyfous: That's a beautiful... Go ahead, Mark.

Mark Rapaport: I was just going to say that that's actually what prolonged exposure therapy is all about. It's about getting the person that's going through the traumatic event to retell this story over and over and over again so that you extinguish the emotion and the physiological responses associated with it. That fits so well.

Regina Scully: You're right and also with stories, I think, what a lot of people are doing and Kirsten, your film brilliantly illustrates this is that in telling the recurring story of your father passing, dying, what you're actually doing is through repetition, you're breaking the loop of trauma. Stories are one of the few ways that we can do that. You're breaking the repetitious loop of trauma by doing what you're doing. Why do people like it to watch It's a Wonderful Life every Christmas? There are a handful of films that when I need to be soothed, when I need to calm down my nervous system, what do we turn to? We turn to the arts.

We turn to a story that we've seen and heard over and over again. Music. We do it all the time, because what we're doing is we are literally calming down our nervous system. And we are rewiring the brain. Literally, we're rewiring the brain. it's self-soothing. And self-medicating again, without the use of other substances. Instead of a drug, alcohol, and I'm not saying that medication doesn't have its place in the world, we need it. I'm all for it, but I'm also for the incredibly restorative and therapeutic benefits of the arts and primarily on storytelling because we know that it has extraordinary effects on the limbic system of the brain, which connects to memory and it connects to emotions. It's why, when we tell our stories, Ross, when you, God, when you watch your films, Kirsten, you too, it aims right for the heart and that of course connects them to the brain, but they worked. And that of course connects then to the brain, but they work together. And we know that physically, emotionally, and spiritually, that these things have an effect over our overall health.

Kirsten Johnson: Regina, I love it that you're a neuroscience junkie, as am I.

Regina Scully: I am.

Kirsten Johnson: One of the things for me that so fascinating, the things that science has yet to understand consciousness itself, time itself, these are the materials that we work with, in cinema. We don't know how it works either. I was so struck hearing the late Oliver Sacks, speaking to Terry Gross about hallucinations. He was saying, how often when someone dies they see hallucinations of the person that they love, and it's happening in a different part of the brain than memories happen and that you're actually seeing and hearing the person. And I thought, "Oh, isn't that interesting, in some ways I've created a hallucination of my father."

Kirsten Johnson: So that when I watched the film, I am in the present moment with him. I am hearing him and I am seeing him. As opposed to, as we all know, as we age and as things affect us the way in which our memory betrays us. I think there's a way in which holding on to the hallucinations of people, that cinema creates, is also a great self-soothing comforter in the world. It certainly is for me, who I can't remember what my mother was like before Alzheimer's. I know that someday I will forget what my father was like, but this film keeps him alive for me.

Regina Scully: Absolutely. Kirsten, I can relate. It's a big part of why, "What Would Sophia Loren Do," The film that I'd done with Ross and Geralyn. That's a big part of it for me, too. It's keeping what we know and what we admire about the people we love. It's keeping it alive. It's keeping the keeping memories alive, keeping them, and it's in the retelling of stories. It's the retelling. Even if that movie is played again and again, or we repeat stories again and again about them. We do it all the time. Indigenous cultures have been doing it for, my God, for ages. That was how they healed each other and how they healed themselves, by the way, through their story. When they would get sick... anyone in the tribe would get sick, they would say, "Oh, that person's lost their story."

Ross Kauffman: I've never heard that. That's great.

Geralyn Dreyfous: That's a beautiful segue for us to take a look at "What Would Sophia Loren Do," and when we return to it, Mark, I'd like you to respond to it, because I think part of what we want to bridge here in this conversation is what is this COVID moment teaching us about resilience and endurance and grit? Like what do we hold on to and connection. And I know just because I've been involved with making this film with Regina and Ross, that Regina said, I have to go to the joy. I mean, she's made over 200 films that have really dealt with trauma. And I have to go to the celebration of resilience and generosity, which really was embodied by her mom and this beautiful metaphor of who Sophia Loren was for her. So let's take a look at the clip, but in some ways I think it is also a moment for Regina to kind of restore so she can go out and do her work, let's watch "What Would Sophia Loren Do."

[Trailer for What Would Sophia Loren Do? plays]

Speaker 6: You know, when the children, when they had a problem and they'd run it by me, I would often ask myself, what would Sophia Loren do?

Sophia Loren: What what's the filler and do? Why me?

Speaker 6: My parents, they went to the Italian movies. And I remember seeing Sophia Loren. Now there's a lady. I wouldn't mind looking like her.

Sophia Loren: [foreign language].

Speaker 6: She depicts a very strong woman and that really inspired me.

Sophia Loren: I think that the step, so my career has been really very hard.

Speaker 6: How many things have we all had that happened beyond our control? No matter what you have to go forward.

Speaker 6: She never gave up. That's courage. That's strength.

Sophia Loren: What really counts is your belief in life in people, in everybody.

Regina Scully: Thanks for that. I never get tired of it, Kirsten. I wonder if you feel that way when you watch your film. I just never...

Kirsten Johnson: Oh, totally.

Regina Scully: I almost can't go a day now without turning it on. It's like I do a little visit with la familia. 

Kirsten Johnson: It's comforting. Yeah. And I mean, what's been amazing with my film is that my father is much deeper into his dementia now, but he's watched the film hundreds of times. It gives his friends back to him, his office back to him, his home back to him, me back to him. And he laughs again, you know, and I totally agree. Like I've seen your film a couple of times, but I was like, "Ooh, I want to watch it again," because I think that there is, something to the repetition that's meaningful, actually.

Regina Scully: Yes. It gives us hook into something that we know and we can take great comfort in, because the truth of it is right... What do we know? We know that one thing we do know is that we actually have no control over anything in life. We really don't. No matter how hard we try. And of course we always want to do our best, but at the end of the day, we really don't control things. But we can control the things that matter to us, and what we enjoy, and how we move in the world, and who we love, and who loves us, and what gives us pleasure.

Kirsten Johnson: We want to make choices about those things. I don't know that we can control those things either.

Regina Scully: You're right, we can't.

Ross Kauffman: We react. It's how we react.

Regina Scully: Right.

Kirsten Johnson: That's right. And what's so amazing about this pandemic moment is it's just vivid for all of us, how little we can control.

Regina Scully: That's exactly right. That's exactly right. And then how much we really do need to go in, and just take stock of what really matters. Haven't you found that when we're in situations where we really are stripped of control, that you really go down to your most basic values. What really matters most, who matters most, because those are the things that we hook onto so that we know, you know what, there, there are still anchors in life and things that we can hold on to. And I [crosstalk 00:35:26].

Geralyn Dreyfous: Want to jump in here, Mark, and give us some thoughts.

Mark Rapaport: One. I really appreciate listening to your enthusiasm and, and, and the thoughtfulness of what you're talking about. One of the things that we can control, and then I'll talk about the pandemic, but one of the things that we can control is that at times when something good has happened, at times when someone has accomplished something, or even at times when you're walking down the hallway, you can share your joy. You can congratulate people. You can say, hello, you can celebrate those moments that occur. One of the things I tell my trainees is that in life, what we need to do is if we write a paper, we need to then share it with our families. We need to share it with our mentors. We need to thank them and congratulate them for helping us do it. If someone were to get a grant again, one of the first things I always do is I go to my family and I thank them for giving me the time to write that grant.

There are things that we control in terms of loving and giving and celebrating the good, because one of the things that we know from the pandemic we know from life, what you were talking about with trauma earlier is the fact that the bad things are going to happen and they're always going to happen. And they happened to all of us, and we tend to focus on them. So we've got to focus on the good, and we've got to celebrate that moment. We really do, whenever it occurs. I think part of resilience in part of... I'll tell you a good thing. That's going to come out of this pandemic. A good thing that's going to come out of this pandemic is that at least in terms of mental health, people are going to realize that all of us are vulnerable. Many more people will have experienced what it's like to be alone and isolated, which many people with schizophrenia, with Alzheimer's with disorders, with many psychiatric disorders, feel. People feel shunned and isolated and alone.

Well, many more individuals in our world are going to get that. Another thing that's going to happen is all of a sudden, the stigma associated with brain diseases like depression and alcohol use disorder, or substance use disorder or PTSD and trauma is going to begin to be less so, because so many more of us will have experienced those feelings, experience that sense of helplessness and hopelessness. And also the understanding that as this resolves, we can get better and can get back to a more normal life, but also a life where we're enriched by the fact that we have gone through these incredibly painful experiences, whether we talk about COVID or whether we talk about the tremendous divisiveness that we've seen in our country. These experiences can add to our humanity, these experiences can give us a sense of others and a sense of compassion that many times we wouldn't have had. All right, enough preaching.

Ross Kauffman: I was going to say. This might not have anything to do with anything, but you think about people went through the great depression and, I know we know people there they're sort of starting to fade away, unfortunately, but a lot of people that I know older, late, you have this great empathy and humor, right. They have this humor about them, and it feels like what you're saying as with COVID the great depression can sort of fall into that category too, where it sort of informed the whole generation, maybe.

Geralyn Dreyfous: Wow, that's true

Mark Rapaport: I mean, if you look at what happened in the late '50s through the mid '60s. If you look at the compassion that society had, that the passing of civil rights laws, the development of Medicare, the development of a social safety net to care for people. I think that's part of the sequela that you're talking about.

Kirsten Johnson: I mean, I think it's so true, but I also think people really have to fight for it because even though so many people are experiencing mental fragility for one of the first times in their lives, there is great shame about it. And we're barely hearing it spoken about. But I think many of my friends are sequestered in solitude. They're the only person and those people I feel such respect for the challenge that they're facing to be going through the pandemic alone. And it's made me think a lot about the way we use solitary confinement within our prison system and what cruel and unusual punishment it actually is. And I feel like those kinds of connections we're going to have to really work actively to make, because I think in the same way Regina's talking like we, we sort of hunker in with our values.

We've also got to make connections that are unfamiliar to us or feel strange to us, but to say, wow, now I can really relate to what it might be like to be living a life sentence in prison and have to be put in solitary confinement. Now, what am I going to do about that, once I've made that connection? And one of the things that I heard someone said to me about what they're missing most in the pandemic is seeing strangers, which I found so beautiful, because it's sort of about like being surprised by things. And that's what I think about with cinema. It's like suddenly it can be... It Surprises you, right? It's sort of these tricks of magic where the world doesn't look quite like it looked and you didn't see it coming. So I do think that we're going to have to work really hard to take advantage of what this moment is teaching.

Geralyn Dreyfous: Right.

Regina Scully: Love that. And I love, I love what you both said, Mark and Kirsten and it's, that's why storytelling, what makes us unique as human beings are the connections that we can form. And through stories we have relationships watching your movie, Kirsten, I have a relationship with your dad now.

Kirsten Johnson: I know, and I've got a relationship with your mom. How crazy is that?

Regina Scully:

I love it so much. I have a relationship with your dad, and you have a relationship with my mom. 

Kirsten Johnson: We've all got a relationship with Sophia Loren. 

Geralyn Dreyfous: Everybody feels like they know Sophia Loren now. 

Regina Scully: That's right. And with Sophia Loren, and that's why we form these relationships and attachments, and that's why, what I had been going on for... There's a reason why they're so popular.

Ross Kauffman: And not just movies. Right? You have a relationship with art. We have relationships with music.

Regina Scully: That's right.

Ross Kauffman: You know paintings, great paintings. I mean, we love them. We hate them. We feel "uh" about them, just like we feel about people sometimes. And yeah, those relationships that really... I love what your dad said, Kirsten, the relationships are what heals.

Kirsten Johnson: It's the relationships that heals.

 

Regina Scully: And he nailed it. And that's why stories will never, I don't care what technology, whatever, however we advanced, we will always find a way to tell stories because it's exactly because of that, the power of connection we be connected. We must.

Mark Rapaport: Have you guys heard about Science Gallery International?

Kirsten Johnson: No, what's that?

Mark Rapaport: Okay. So a number of years ago, and it started outside the U.S., a group of universities haven't begun to get together. And what they do is they bring students with professors in the arts, with professors in the science and scientists together to create these shows and projects about different topics. So, most recently it's been virtual and it was about grief. And this involves universities in Ireland, universities in the U.K. now in the United States, both Michigan State and Emory have been involved in it, universities in Italy,= and India and Australia. And the idea behind it is to, to bring together in a conscious way, science and artists of different types and different types of scientists with young people to begin to tackle these different topics. So there was a wonderful one done on the anxiety of climate change.

And it was a spectacular sort of series of different types of vignettes and, and, and works that are, are put together in a curated show. And then there are discussion groups and different projects that occur during the showings of Science Gallery. It's a wonderful thing to look at, and it's exactly what we have to be doing, and exactly what I hope that we will be doing here at the University of Utah with the Huntsman Mental Health Institute.

In fact, we've already started to think about, I want to put together something where we have storytellers, filmmakers every year tackle things looking at mental health and depression and, and Alzheimer's disease and how we can better break down the stigma around it. And I firmly believe that that is through the power of storytelling. In my previous job, we set up a branding person, a woman named Jay Watson, who's a tremendous storyteller, and she became so good at this, that Georgia Public Broadcasting created a show about what we did. Your fantastic mind is so important. This is how we communicate.

Kirsten Johnson: And, as I talked to other parents, I'm the parent of nine-year-old twins. One of my first responses to them living through this moment in history is they are going to need the internal resources that this is going to give them because the world is going to change again and again and again, in their lifetimes. And human beings are going to need a lot of resilience and a lot of adaptability, psychically, to handle climate change. And I think that that connection between mental illness and climate change is people are just starting to get it because of what's happening now. But` I have enthusiasm about the resources that my children are building in this process. And it's what all of us need to build in this moment.

 

Ben Tomlin: Okay. I'll go ahead and read a question that just came in through chat, a request to address either "Fire with Fire" or "One in a Million." And then ask the question about whether we can weave art, science and storytelling together. I'm just throwing that out from the chat. Geralyn, I'll let you...

Geralyn Dreyfous: I think that is easy way to segue back to that. One of the things that I've learned with being with scientists and being with storytellers is that scientists aren't often good at telling their story and that the filmmakers helped them understand their story just by the questions that they ask. But that the public is very good at understanding the wonder and awe, that really is the primal motive for most people that are in the sciences. You know, you think you have this idea of these scientists being these nerdy kind of down a rabbit hole. But in fact, the wonder and the awe is really kind of what we find as storytellers is when you peel back a few layers.

And I just thought that would be a great thing to think about and show a real beautiful example of that in Ross's film "Fire with Fire." And maybe the film that grew out of the University of Utah's new narratives in medicines project. So Ross, I don't know if you want to set it up or you want to just like, watch the clip of "Fire with Fire."

Ross Kauffman: Let's just roll the tape.

Geralyn Dreyfous: Let's just roll the tape and wonder in the awe.

Ross Kauffman: That's right.

[Fire with Fire plays]

Ross: Take One.

Ross: Is it hard for you to say those words, we're trying to cure cancer?

Dr. Carl June: That's a really good question and why it's hard to say we want it to cure cancer. We do. And I think sometimes it's hard actually to think that you might actually succeed.

Dr. Stephan Grupp: Patients that we're treating on this clinical trial have absolutely no other options left for them. These are patients who are unfortunately destined to die of their disease and in a fairly short amount of time.

Speaker 7: Emily Whitehead, 5-5-4.

Dr. Stephan Grupp: My friend, so Emma is incredibly matter of fact about all of this stuff. This was a child who had had her leukemia come back twice. The parents were looking for a miracle.

Dr. Carl June: What we've learned how to do is train them in system to recognize, and then kill tumor cells.

Dr. David Porter: It's a procedure where we collect their T-cells and they are infected with a virus that will genetically change them so that they will now see and react against their leukemia cells.

Dr. Carl June: And we actually use the HIV virus to do that.

Ross: So you're taking the HIV virus and effecting healthy cells with it to help kill cancer.

Dr. Carl June: Yes. The virus has been engineered so that it can't cause disease anymore, but it still retains the ability to reprogram the immune system so that it will now attack cancer cells.

Dr. Carl June: We call those modified immune cells, serial killer cells. Each infused cell can kill more than a thousand different tumor cells.

Dr. Stephan Grupp: But the reality is the dramatic responses of cancer to new treatments are very unusual. We need to make it clear when we talk to a family that it may not work. Emma was given her T-cell treatment. And within a few days she was very sick. She had breathing difficulties. She had blood pressure difficulties. We knew that she could not have gotten any sicker without actually dying. But then a remarkable thing happened. The T-cells were growing. They were starting to fight the cancer within hours, Emma's fever disappeared.

Dr. Carl June: It was like the calm after the storm. The clouds went away, she woke up and there was no leukemia. When that child survived. It was of course an amazing event.

Kirsten Johnson: It's oving to see a doctor cry. You never see doctors cry.

Ross Kauffman: Exactly right. He's such a sweetheart. Oh my God.

Geralyn Dreyfous: Well, I think that's a perfect example of how, when good science combined with good storytelling connects us to the humanity of what would I have done for my child? What would I have done for a doctor that cared as much as Carl June? And how grateful we all are that we live in a country or a community that invest its resources in, in science and discovery. It just fills you with wells of gratitude.

Regina Scully: And it activates our sense of compassion and empathy. That's without that there is no connection.

Geralyn Dreyfous: Right?

Kirsten Johnson: And in your piece, Ross, you have connection both to the family and the child, but also to the doctors trying to do it. And it's so sort of startling to hear him say like, you don't dare hope that it might work because, you know, the implication is it's too painful to deal with it again, it not working again.

And I think that's one of the things I think a lot about having been a camera person who's filmed in so many places. I think about all the members of our community who deal with trauma and disease and violence at scale. So who sees stories over and over and again, and see the repetition of the difficulty as opposed to the rare occurrence of something turning out all right, or some child surviving and the way that we don't really support the teachers, social workers, police, officers, EMT workers, all of the people who have to deal with the repetition of the trauma. And that's in your movie in a certain way. The fragility, the way a doctor has to defend himself against the possibility that it might turn out all right.

Ross Kauffman: The thing with Dr. Carl June, who, now I've known for almost a decade and Geralyn and I were making a feature documentary about him and the research and Emily and using their two stories. The fun part for me is I get, we get to really delve into Dr. June and he's one of the most incredible people. And I think who was it saying that sometimes scientists and doctors and people, they don't really know how to tell their story, right? And so that's where we come in. And for me, you can have a great story and blasé character not going to be a great film, but you can have a decent story and a great character, and you can still have a great film. So it's all about people. When I first met Dr. June, I remember we spent eight months trying to get access to the story.

I remember, we spent eight months trying to get access to this story for a three-minute film. Everyone thought it was crazy. I am. I remember we finally got access, and I hate doing research, and then finally, I did a little research and I looked up Dr. June on MSNBC, and he was like... I love you Dr. Jude, but he was like a piece of wood... and I was scared to death, I'm like, "Oh my God, what have I gotten myself into?" Then, Chris personally... I've seen you do it out in the field. We both do it. It's just like being normal, being a human being, just like ourselves. A lot of times, filmmakers, they have this preconceived notion of what they're supposed to be like and what they're supposed to be.

Kirsten Johnson: And also, sometimes their profession demands it, you know?

Ross Kauffman: Absolutely.

Kirsten Johnson: They'd be clearer, and calm, and unemotional. And they've spent... All of their training tells them to be that way. And it's needed in the context of having to walk into the next patient's room and tell that family that that person is going to die. I do think that the openness that the camera catalyzes or makes happen is challenging and dangerous sometimes for people given what they need to do in their lives. And, I always try to think about that when I'm filming with people also.

Ross Kauffman: Absolutely.

Kirsten Johnson: They want to connect, but they also need to retain who they are in the world to go forward with the work they do. So it's a delicate balance.

Ross Kauffman: Absolutely. And the wonderful part about my job, especially in this particular situation, is I got on the phone with Carl, for a pre-interview and he cried three times, and it was so beautiful. And it just takes a little bit to sort of give that, not permission, but just to be there, and how protective we feel. And so, at that point, it was my job to just make him feel comfortable and just be normal and let him be in front of the camera. And the other thing is, his first wife actually died of cancer, and that was part of the reason why he's been on such a mission. And it's an honor to get to know Carl, but it's also to weave these stories of these scientists and doctors, and try to find the emotional pull and the emotional hook-

Mark Rapaport: That's was remarkable.

Ross Kauffman: It's a challenge, and whatever works, it works. Really works.

Kirsten Johnson: Audiences are defended too. Audiences have their protective armor on also.

Ross Kauffman: For sure, for sure.

Mark Rapaport: But, it was remarkable how, in three minutes, you were able to tell the story, and how much compassion you saw in that story, and also how much hope for the future, and again, the value of why we need to invest in science, why we need to do what we do in terms of research and caring. And that from many of us in science, that it really is about the people. And you did that so well in three minutes. That was amazing.

Geralyn Dreyfous: That's the power, I think, of what we're going to try to do here at this partnership with the University of Utah and Sundance. And that's probably a great segue to show our final clip, which was this film that premiered at Sundance two years ago, One In a Million, that Ross and Jeremiah did that grew out of research at the university of Utah.

And for those of you that are joining us for this conversation that have been supporting the University of Utah or supportive of Sundance, I think this is a real opportunity for us to celebrate two great centers of innovation and really invest in this idea that if we find storytellers like Kirsten and Regina and Ross, and we pair them with the stories that are going to come out of Mark's new center at the Huntsman on mental health or the stories that came out of the Utah Genetics Lab, that will not only lift up the sciences and the work that's being done, but will lift up our spirits and our belief and our confidence and our imaginations at the same time. So I just want to show this last film, which I think is just kind of breathtaking, and right here in our backyard of Utah. And then we'll let Ross talk about what it was like to make that film, and then the impact that it's had. And we'll wrap up for another great session. So, let's show One in a Million.

[One in a Million plays]

August Teuscher: Tyler was normal, typical developing child, until he was 6. He started having all these symptoms. They told us that it was terminal because of how fast it was progressing.

Dr. Lorenzo Botto: Tyler came to us and we were very concerned about him because things were getting worse. There was that sense of anxiety. What if it was the worst case scenario? We spent weeks searching for an answer in the quest to find a diagnosis. What we found-

Speaker 9: - was incredible.

Geralyn Dreyfous: I want you to tell the audience, they can go online and watch the full movie, but tell them what you found. And then tell them what happened as a result of finding that.

Ross Kauffman: Well, first of all, Jeremiah Zagar, wonderful filmmaker. And we both directed the film. What we were doing was we were looking to make a film about the Penelope Program. The Penelope Program is a program out of the University of Utah, and that basically bring scientists together and they search for people's DNA to figure out rare and undiagnosed diseases. And so, our DNA, diseases, how do you attack that? I can't even tell you what the film's really about, scientifically. I still don't know.

But the key to these things is also having a liaison at these institutions who understand what storytelling is all about and will be with you, figure out, and listen to you when you're trying to cast and get the right doctor and the right people to tell the story. Dr. Lorenzo Botto is an incredible man, who heads the program. And we found Tyler and his mother in all this, and they were very open to filming and we just followed their story. And we told the story of how they came to find out what was wrong with Tyler, and dramatically improved the quality of his life and changed the trajectory of their family's life.

Geralyn Dreyfous: In fact, it wasn't a terminal illness at all. It was a vitamin deficiency that this big data, that by identifying this gene, it was such a simple solution.

Ross Kauffman: Isn't that crazy?

Geralyn Dreyfous: Crazy. Totally crazy. They just were watching this person atrophy. And it was almost like an immediate solution just by being able to do this genetic sequencing. And then, we showed this film to the Utah Legislature. And as a result of that, our state government put into law that any family, any child that had an undiagnosed illness, their whole entire family would be genetically sequenced for free as a result. And they named it after Tyler. I think the bill was named after Tyler, which was so beautiful to watch that happen from the day we premiered.

And it turned out that one of the people in the audience then also went to the Penelope Project. He worked at Zions Bank, which was a sponsor. And through doing genetic sequencing, because he had a daughter with an undiagnosed illness, they were able to detect that he had cancer. So they saved the father of the daughter that they were trying to find the undiagnosed. So, the kind of miracles that happened, it was just such a beautiful launch. And then they showed it to the legislature and then passed that law. And it just made me so proud of Sundance. And it also made me so proud of Utah to see something and say, you know, we can do better. We can do something about that. 

Kirsten Johnson: You're reminding me of one of those comical stories of my career. Early on, I made a film about female genital mutilation, and I had worked with Molly in Paris, and we made this short fiction film. And I took it to a film festival that was called The Minorities of Europe Film Festival. And there was a Basque men's choir. And afterwards, at the bar, this Basque man came up to me and he said, "Female genital mutilation saved my life." And I said, "Excuse me?" And he said, "It's the most terrible thing in the world. And I was watching a documentary about it. A report on it. And I fainted. But my wife thought I'd had a heart attack and she called the ambulance and the ambulance came and it turned out I did have a heart problem and I would have died. And from here on, I am devoted to fighting female genital mutilation."

It was like, this Basque man in his sixties telling me he was an activist about this, it blew my mind the way in which we can never know who people are, what they've been through, and how they connect in different ways to people. And just, never underestimate your audience.

Regina Scully: Or the call to action that our stories will activate.

Geralyn Dreyfous: Yep. Exactly.

Regina Scully: That's what's remarkable, is that there's a call to action in all of these stories, that you don't know what, how, and where it will ignite somebody. And it's remarkable. And I think that all of these, whether it's Netflix, that they're in the health business, they're in the mental health business, you know?

Ross Kauffman: Yeah. I think we have to think about these films also as just one tool in the toolbox to try to create change. Smetimes we will take it and try to do everything now. If you tell a great story and hook people with their heart and their mind and their brain, that's one tool that can help.

Regina Scully: Super powerful, super powerful. It's true. Stories are like the uber supplements of our time.

Geralyn Dreyfous: Well, I think one of the great lines in the last conversation we had about What Sophia Loren Would Do, is that the movies gave your mom permission to remember and say out loud some truth, and maybe even secrets about her life that she hadn't... Maybe she had shared them, maybe she hadn't, but she was ready to share. She felt comfortable to share, that somehow watching those films again and revisiting trauma allowed her to speak out loud.

Regina Scully: And it triggered, Geralyn, memories. That's why it triggers stories, through neuroscience, they trigger emotions and memories. So Nancy just may not have even thought about it.

Geralyn Dreyfous: Right.

Regina Scully: And then watching these images and Sophia, for Nancy just unlocked a whole sequence of memories and emotions for her that Ross was so skillful at. And when Robin, our other producer, just at unlocking it, and giving her the room and the space to voice it. Our stories give people voices, and they give the people who are watching them a voice too.

Geralyn Dreyfous: Right. So I think a question that might be great to leave the audience with... We're waiting for Mark to come back. He got cut off. I don't know if he's joined us or not.

Regina Scully: Right, that's right.

Geralyn Dreyfous: But a question that we could leave the audience with is, given what these stories have taught us as the creators, but also what the audience have shared with us, what they've learned, and what we've learned through this pandemic, how are each of you going to care for your own self differently? What are some things that you'll bring into your life around self-care that maybe one of your characters taught you, or maybe making the film. Both of you, both KJ and Regina made films about parents that you love that are old, and aren't going to be with you for much longer. And there was this collective between the two of you and wanting to keep the beautiful part of Nancy and your mom alive. But what will you do? What will you nurture in yourself?

Regina Scully: For me, to live in the moment. This year with my big COVID silver lining and this film, What Would Sophia Loren Do, Making it with Ross and Robin and Netflix embracing it the way they did it. It was, for me, such permission to just really be aware to live in the moment, that the power is in the present. We don't know what we have in the future. And, it's just really being present. I'm enjoying every single moment I can squeeze out of every day now, that I don't know if I was doing quite in this way before.

Geralyn Dreyfous: That's beautiful. Ross, what about you?

Ross Kauffman: Well, I think about our wonderful producer on What Would Sophia Loren Do, Robin Honan. And Robin is an extremely positive person, and to every zoom conversations, she brings a lot of joy. And one time we were talking about something, something good happened. And I said, "Well, I want to protect myself. I don't want to get my hopes up." You guys all know me. And she said, "Ross, we just have to allow the wow."

Geralyn Dreyfous: Oh, I love that.

Ross Kauffman: And, I thought, okay, got to love the wow. So, I have a post-it up in my office. It says, "allow the wow."

Regina Scully: And the wow of now.

Ross Kauffman: In the wow, exactly, and just to be present. Isn't that great? Allow the wow. Thank you Robin Honan.

Kirsten Johnson: And I'm going to add the pow of color. For me, I realized I really need color. I need color. And, I'm outside of the city and I'm not traveling all the time and encountering all kinds of difference. And it's actually really nourishing for me to see color. So, allow the wow and [crosstalk 01:12:00] the pow of color.

Geralyn Dreyfous: I love that. So, Mark, while you were gone. Mark, while you were gone, I asked them what was each of these creative entrepreneurs, these little truth slayers and sayers, going to do to self nurture and take care of themselves for their own mental health, as they navigate between the joy and the heartbreak of, and the beauty of the brokenness in this world, in this moment that we're living in. And just to catch you up, KJ is going to have the pow. She's going to have more color. She's really feeling like color is something that animates her. And Ross is going to allow the wow. He's going to actually embrace it. He's going to let in more things. And Regina is really learning to live in the moment and just teasing every morsel of deliciousness out of the time she's with her mother with this film.

Kirsten Johnson: You have to come up with something that rhymes with -ow doctor. It could be something to do with wow.

 

Mark Rapaport: You're asking a nerdy scientist and doctor to do that, to be creative. Well, now I can tell you what I will do and do do, and that's, I just spend time with people I love, all over the world and with my family and my grandson, with my friends, with my cousins, with my brother. I just spend time with the people I love. And that, to me, grounds me. It refreshes me. It's the most important thing in my life.

Regina Scully: So beautiful.

Geralyn Dreyfous: Well, that's wonderful. I can't imagine a better way to end a more glorious conversation that could have gone on for hours.

Regina Scully: How about you Geralyn? How about you? 

Geralyn Dreyfous: For me, I think mine's pretty close on the family piece, spending the time with my kids has been incredible during COVID, and really realizing that I'm going to work in a very different way. I don't have to do all the things I was doing, and really taking stock in the fact that I've been very blessed, that I don't have to be responsible for as many things as I was responsible for. But I just put so much on my shoulders that, it's probably better for everybody if you share that responsibility.

So, I'm learning to take things off my plate. I mean, my plate was taken away, but I'm also learning to not heap it back on, not getting in line for the next buffet, you know? And like, so it's been a really great teaching. And I've also done a lot of thinking about recovery, just this idea of healing relationships, looking at where there's been resentments that you don't need to carry anymore. You know, just unpacking a lot of stuff, just really letting it go. And, often, what I've learned is you don't even have to have a conversation with another person. It's just giving yourself the time to really think about, is this really serving me? Is this the story I want to be telling anymore? I don't think so. You know, it's a-

Regina Scully: -energetic. It's energetic release.

Geralyn Dreyfous: So I just think it's great to have this time to actually be in this conversation with friends too, because we're all in it. It's like, you can't have a conversation with someone that you care about that's not saying, what are you learning? What are you doing differently? I think it's a great question. And I hope it continues. I hope people bring that intention into their lives, post pandemic too. Sort of reflecting on what you said, Mark about happened, the generosity that happened after the Great Depression. After the last pandemic, we had the Roaring Twenties. So I hope there's some real crazy-

Kirsten Johnson: It makes the Roaring Twenties make more sense, doesn't it?

Ross Kauffman: Yeah, sure.

Kirsten Johnson: Of course, everyone went crazy and just wanted to dance. Yeah. Totally, yeah.

Geralyn Dreyfous: It does make sense.

Kirsten Johnson: We had no idea.

Kirsten Johnson: No.

Regina Scully: And the resurgence of kindness. Don't you find people are just a lot kinder to each other. Kindness is a real superpower.

Geralyn Dreyfous: So great. Well, I just want to thank all of you. I don't think it's just because we've been trapped in our own homes for almost a year with COVID that this conversation feels like it could go on for hours and hours. I think there is something about connecting around these greater truths, and the power of story and what it opens up as a possibility for all of us, what it gives us permission to say out loud. And I look forward to having this conversation in person next year at the Filmmakers Lodge, and to welcoming you Mark to the true Sundance experience next year, not the virtual one. And thank you for being the amazing filmmakers and storytellers that you are. It's just such a privilege to work with all of you, and get to know you better just by having these conversations. It's so beautiful.

So thank you. Thank you. And thank you to Sundance for sponsoring this magnificent festival that we stand on so many people's shoulders for. And for all the great work that you do with saving lives and teaching us about what matters. So thank you. Thank you University of Utah.

[Q&A begins]

Hello. Oh my goodness. We're here. It worked.

Kirsten Johnson: We're all fresher, wearing more fabulous clothes.

Regina Scully: I don't know about that.

 

Kirsten Johnson: The conversation was so epic. Does anybody really have a question after all this? That went on forever, right people?

Geralyn Dreyfous: There were some questions that were scrolling along, while we were watching it, that were really great. And I can't get my chat thing to scroll back up to them, because everybody's thanking us now. So I don't know if there's a way to scroll back down to some of those or maybe whoever wrote them can write them again.

Ross Kauffman: If you click on the little question mark up at the top, in the middle of the thing, it should filter out your questions.

Geralyn Dreyfous: Oh, good. Okay. And then one question I do remember is that can any of the panelists, and this might be for you Mark, speak to the connection between laughter and serotonin and why laughter and humor is so important.

Mark Rapaport: Yeah. You know, it's not just serotonin. Laughter and humor, what it does is it actually increases a whole bunch of, we think, it increases a bunch of neurotransmitters and circuits in the brain. Circuits that are involved in reward or involved with pleasure. Some of the same circuits that are involved in addiction, or why you like different foods or different things also get activated with laughter and humor. And so it creates a wonderful change in brain circuitry. It's just awesome. We did a paper years ago where we showed that we could use humor to help treat depression. And it was very, very powerful.

Geralyn Dreyfous: That's so great. And KJ, you might want to respond to that because it's so important to you and Ross and Regina have there own-

Kirsten Johnson: All I can say is that, I really had to work to create humor in this film. It took effort, and that effort brought out all of these extraordinary collaborations and ideas. And I have to say, there was something really empowering for all of us, including my dad, about trying to make something funny out of this situation, so that it put us into the creative process, which I think also must tap into some kind of pleasure center, even though it also taps into anxiety and difficulty and all those things too, making things as hard. But it's also euphoric moments of joy when you're able to make things together. And so the effort to laugh about all of this took us to new places.

Geralyn Dreyfous: Regina, or Ross? Humor? I know that Regina now famously quotes her husband about, Regina, are we ever going to make any movies that either A, make any money or B, we don't want to slit her wrist after? She's on a joy ride now making sure that stories include choice . So maybe you want to speak on that.

Kirsten Johnson: No, it's true. I think humor is why I'm passionate about the subject of recovery, broadly defined. And I think humor is just one of the most extraordinary portals to recovery. For all the medical reasons, for all the chemical reasons, that Dr. Mark was so eloquent in describing, and just in how it affects our mood and our brain circuitry. I think it's extraordinary. And equally powerful, right Ross, when we were making What Would Sophia Loren Do. It's just been so powerful, all the giggles and the laughter.

Ross Kauffman: Yeah. It kept our mental health... But I was also thinking, in terms of laughter, humor is what we all relate to. We can all relate to humor. And it's in, I think I said before, it's in some of the darkest moments that humor comes out, and that's what we relate to. And that's why it's so important. Like Kirsten, all I know is I love your movie. It made me laugh so much. And it was just beautiful. It made me cry. It made me laugh. But that humor is what gets us through the day. And it's so important.

Geralyn Dreyfous: Yeah. One of the questions was also for KJ, Kristen. Because your dad has dementia, and there was the repetition of him dying over and over again, was there ever any agitus around that? Was there ever any backlash around that?

 

Kirsten Johnson: I mean, I think there are definitely moments when my dad got tired and confused and we included one of those moments in the film where he actually thinks we're asking to use his real blood for a stunt that we're doing. He could only be reassured by me and once I told him it was fake blood, he was like, "Oh, I'm fine then." But I think that goes to the terrible confusion that a person with dementia is experiencing. There are only a handful of people sometimes, or no one that they feel that they can trust as the world is like shifting and changing. So to anyone who asks whether I faced ethical dilemmas in the making of this film, I did all the time and really wondered whether it was okay, what I was doing.

I felt great responsibility, as we talked about earlier, but these things are dilemmas. I also want to respond. I see, in the questions that there's Malika's saying, "Why aren't there people of color on this panel, that we're missing representation," and absolutely, yes, we are on this panel. These are the challenges when we try to make work and do things, we're falling short in certain ways, the ethics of it are complicated. You get six people on a panel and you don't have all the people that you need to have on the panel. All of those things, we have so much work to do on this planet and in this world. There's so much work to do that we're all like not getting enough of it done all the time and we make these choices.

I so appreciate you raising that question in the panel and like the people who organized this panel, many of them who are people of color will say, "Okay, next time we shift the representation on the panel." But I think, I just want to say that this is what we struggle with as filmmakers, whose stories do we tell? How do we tell them? And we feel our failures and they are real. We can't do it all in every moment. There are some things that have been done the same way for a long time that we need to stop doing. So I actually, several years ago said I wouldn't be the only woman on a panel. Then I started saying I wouldn't be on a panel with only white people. It's like these things shift over time and it's a struggle. We got to be honest about the struggle of it.

Geralyn Dreyfous: Yeah. Yeah. So that was one of the questions that people wanted to address is how do we open this conversation up around mental health in a more diverse and inclusive way. AI think that, I don't know if anybody else wants to address that, but I think that there is a real conversation happening in the film community about who should tell stories or who should be part of the conversation or part of the team, and in a way that I've never, I've been in this business for 20 years and it's dramatically palpable and different, and it's raising all sorts of new questions too, as KJ said. We don't have it right. It's not perfect. It's evolving.

Kirsten Johnson: As we all just, sort of our hearts soared at that incredible poem at the inauguration, and she used the words, we are not broken, we are unfinished, we've got a lot of unfinished work that we are very aware of, but we all have to speak much more publicly about.

Regina Scully: Absolutely.

Geralyn Dreyfous: That's so great. Maybe, I don't know, Mark, if you have any questions. I mean, if you have anything to add there, in all the experimentation, are you learning anything culturally or from different communities that are good lessons learned for?

Mark Rapaport: Sure. I think there are a couple of really important lessons. One is that one really needs to understand that many different cultures and many different peoples define mental illness and illnesses of the brain differently. We have to understand the words and the meanings within different cultures, because they're not the same. It's really important to do that.

Another thing is we also have to, particularly in the United States, earn people's trust. We have to earn the trust of underrepresented minority groups because many times these groups have been exploited, many times these people have not been heard. Because of that, you just can't go in there as a white dominant culture and say, "Hi, I want to get involved and I want to fix this and I want you to trust me," because after the Tuskegee experiments, after many of the things that have occurred in our society, we've got a lot of work to do earning trust, earning respect, and also understanding that within different cultures, brain diseases present in different ways and are interpreted in different ways. If we're not sensitive to that, we're not going to be able to engage people and really help them.

Regina Scully: That's a good point.

Geralyn Dreyfous: There was a question about are there places, are there resources that we have as storytellers that we can recommend that blend the worlds of science and literature, so this idea of new narratives in medicine or new narratives in neuroscience, and how do we kind of use storytelling as a way of explaining things or getting to the laughter or to the hurt. I'll just take my first crack at it because I've actually been doing like a little bit of research in this space. There isn't a lot there, interestingly enough. Also, interestingly enough, Katie Coles, who's a professor at the University of Utah, I don't know if she still runs it, but she had one of the most spectacular festivals around science and literature, where she brought storytellers and poets and just kind of really great science together.

Geralyn Dreyfous: But these worlds are too much in silos for my way of thinking. I just feel like the emergence of biotech and the kind of new frontiers we're going to experience in our lifetimes, in our kids, that we have to bring those worlds closer together. So I don't know, Ross, if you have any resources in that space or KJ or Regina, you can think of any programs that are doing that well, but there are some foundations that are doing that. There are labs at Sundance that are trying to do that, but there isn't a place that I can point you to, and I've been looking for them. So if anyone else has one to add, that was a question that was in the chat room. Anybody else have any resources?

Ross Kauffman: It's really, it's a tough area.

Kirsten Johnson: I would add Science Sandbox Foundation that is trying to shift the way that we think and talk about science in the world of media and they're really open and thinking in really curious ways. I mean, I think the other thing that we are, as a society, just having to contend with is to say that the racism that exists in our history, in all of our institutions, in all of our approaches to science, to medicine, it is built through the systems. So how do we keep that constantly in our awareness, as we try to build these bridges between art and science and keep the sort of critical lens open to how much work we have to do in all these different dimensions.

Geralyn Dreyfous: Great. Let's see. There's another question.

Kirsten Johnson: Also know there's a really great group called Blacks in Neuroscience that's a really amazing group doing a lot of work, thinking a lot about racism and the brain and neuroscience.

Geralyn Dreyfous: That's great. So there's a question about loss, like returning to the conversation around grief and, again, remembering why it's important to both be able to cry and to laugh. I wonder if the pandemic has made us more open to think about loss and grief or anticipate death if anybody has any thoughts about that.

Kirsten Johnson: I honestly think we aren't crying enough for who we've lost and what we're losing. I think because we're all very emotionally defended because we don't know what's coming next and we feel like our resources and our capacities are at stake. We don't know when we're going to work next. We don't know if we're safe, if people are going to be safe. We don't know which death is coming out of the blue. So I think that there's a lot of emotionally defended behavior and psychology happening right now. I did find myself just like crying reading Cicely Tyson's obituary today. And it's just the things [inaudible 01:34:06] out of the blue, the sort of people that you don't imagine are going to die. And then when they die, then it sort of allows grief for them and also the grief that's ambient right now.

Mark Rapaport: You know, there's a, there's a lot of talk and there's been a lot of talk and discussion in medical literature and amongst healthcare professionals about grief and sadness and loss during this pandemic. It has been a topic that has come up far more than I've ever seen in the medical literature and there have been huge discussions at many medical conferences. The development of websites and the development of discussion groups really focused on this because this pandemic has been devastating for most people involved in healthcare in many, many ways, not just personal loss, but to be taking care of so many people and having feelings of helplessness. So it's actually been a very, very well discussed topic.

Geralyn Dreyfous: That's interesting. Is there a sense that people aren't crying enough? That's my question. I don't think people are crying enough.

Mark Rapaport: Maybe not in general, but I can tell you within the health care professions, yeah. People have been really moved by this pandemic and how helpless we have been and have been in so many ways and how ongoing it is. It's not as if it's a one-time event around a disaster. It's going on for months and months and months with waves of it coming and then going, and then coming again, changes in the virus itself. So it's been a huge amount of feelings. It's been a very different experience for many health care professionals.

Geralyn Dreyfous: Within the healthcare professional world. That makes so much... I'm happy in this horrible context and know that there is communication happening about it. Also for anyone on this panel, I can highly recommend Nanfu Wang's film, In the Same Breath, that's playing at the festival, which looks at this year and the pandemic both from the point of view of what's happening in China and what's happening here. It's a very powerful film.

Ross Kauffman: I just have a quick question. What about PTSD? What about getting a little jump on the PTSD that's going to happen? Have we been talking about that or have there been conversations?

Mark Rapaport: Oh yeah, there have been huge conversations going on. In fact, some colleagues of mine very early on published a monograph that's being used by the American Psychiatric Association, the Anxiety Disorders Association of America, and many other associations looking at the different phases of trauma and the impact of trauma, both on individuals in our society, but also healthcare professionals and looking at the different phases of trauma and treatment that are going to be necessary. They're both [inaudible 01:37:45] phases. And then as things wind down, other types of interventions that need to be done, but also long-term sort of interventions and things that we're going to need to do as a society to deal with the effect of COVID-19 on our world. So yeah, it's a very important topic and one where there's a lot going right now in terms of [crosstalk 01:38:09].

Geralyn Dreyfous: Is there any place that you would suggest that we turn as resources to understand the sort of protocols for imagining how we might be addressing the PTSD that comes out of this? Where would you be looking to be reading about that?

Mark Rapaport: I would go onto different websites. So for example, you go on to the Anxiety and Depression Disorders of America website. They've got a whole bunch of material there right now, as does the American Psychiatric Association, the American Psychological Association and where I was previously, the Emory Brain Health Center has a huge amount of material and tip sheets that we had developed dealing with these issues. So it's all there.

Ross Kauffman: Let me say one thing without getting on video. I just wish we could find different terminology that didn't have the stigma behind it so people could really embrace it. You know what I mean? Those words, you just sort of jump back and you don't really... I just want everybody to be able to say, "You know what? I feel this way." Even though it's depression, just something where we can create a new language around it.

Mark Rapaport: Either a new language or we changed the context of the language. We did this with cancer. We changed the sort of affect and connotations around cancer. For many years, it was taboo to talk about that. If you think about what we were talking about culturally in many ways about the fact that anti-racism has become a major and important issue that all of us are talking about. Well, for a long time issues around sex, issues around prejudice, issues around different cultures were considered taboo. So I think it's part of us saying, "No, these are part of who we are as people and embracing that," and embracing that it is not wrong or a weakness, and it's not a sin, but it's part of the biology of all of us just like heart disease and lung disease.

Geralyn Dreyfous: That's very beautiful. Yeah. I'm just seeing if there's any other questions that are in the chat room, but one of the things that I wanted to just say about both, I saw Nanfu's film as well, and there's another film that's out right now called, Try Harder that's on MTV and free. And it was the Chinese experience to the lockdown. You see how both governments, both authoritarianism and ours, they lied to their public, but what I appreciated in Nanfu's documentary and in Try Harder was there was this collective sense of grief in China that I wasn't expecting. I had my own cultural bias. I realized it was missing from our American experience. It wasn't until I saw the flags at the inauguration that I felt like this is really the first time that anybody's tried to visually represent and acknowledge the deaths, the number of deaths and that these flags were replacing people, both symbolically and both figuratively and symbolically and virtually because people couldn't be there.

I just feel like just acknowledging how hard it is. Sometimes when things get really... If somebody is getting cranky in my house, rather than responding to the crankiness, I'm saying, "It's amazing there hasn't been more crankiness in this house given how much we are just seeing each other and nobody else. So allow yourself to kind of be cranky for a minute." I feel like I know everybody's managing a lot, but I also feel like people are managing it pretty well. I mean, there's been an adaptation, as Regina said, there's been a kindness or generosity that's also pretty remarkable that does show you how easily we can kind of slip into adapting, which is both good and bad. Water could be boiling and with climate change and we're adapting to, but do you have any thoughts about that, Mark?

Mark Rapaport: Yeah. I think it speaks to the strength and the resilience in people. I do think it also speaks to the fact as we were talking about earlier about kindness that trauma and times of duress can bring out the best in many people and can also allow people to reflect and you see strength and courage that you didn't even know it was within you. So that's part of the wonder of these events, and it's part of the wonder of people, how much resilience we have. It's really remarkable. 

Geralyn Dreyfous: So great. I just wanted to say that, unless there are some more questions coming in from chat, one of the attendees by the name of Patty had a great comment, which is, she said that she has Parkinson's disease and so much of what's been shared on this panel applies to her life and today, and her mantra is a combination of what we shared, allow the wow, you know how! Live now. So I think she got Mark, Ross and Regina, and we just got to put the color in there for KJ.

Regina Scully: I like that. I like that.

Geralyn Dreyfous: That's so beautiful. So thank you, Patty, for sharing that.

Regina Scully: Thank you.

Geralyn Dreyfous: Anybody else? Any closing comments about resilience or the sort of new anatomy or a new language around mental health, and that we're going to be exploring more rigorously, both at the University of Utah with all the research that the Huntsman's amazing gift is going to allow the university to do, but just as a new frontier. I know it's an area you think a lot about, Regina. Maybe talk to us a little bit about your philosophy about neuroscience and new frontiers and storytelling.

Regina Scully: Well, I love that all of these new developments are happening and that more resources are going into the study of mental health and the study of the brain, because it does seem like it's the last frontier that we haven't... We've made so many inroads with cancer research and all of... We're almost bionic with our limbs, right? New knees, new hips, new everything. So it's time now that we go in and understand the brain better. So I'm very excited about that. I think all of these stories are so magnificent because we're de-stigmatizing everything, just as Ross was saying earlier, just to take... Everyone is going to have a mental health issue at some point in their lives. It's just, it's not possible. If we're alive, that's the human condition. We're going to experience the highs and lows, and it will manifest into our bodies into the physicality.

So I'm very excited by these inroads. We have to do it. I just want to add two more things. Like we were saying, how with people, what they're feeling in this pandemic, I think a big part of it, and when we experience even depression or mental health challenges, it's also just the fear of the unknown and the lack of control. Just as human beings, we're so used to being able to be proactive and we're so technologically advanced and we're able to do so many things, but there's still, at the end of the day, there are things that we will never ever be able to control completely. There's always going to be the unknown. We're probably always going to be working against ourselves or with ourselves to manage our own anxiety around those two things. So I think that's just a big part of this exploration of mental health is embracing the fact that lack of control we have and just embracing just the unknown, that there are just things that are unknown and that just take time and that we can't every minute of the day really understand everything.

Geralyn Dreyfous: Yeah. There's another question that just came in, which is relevant to this, which says that family members that are trying to take care of people dealing with mental illness are also tremendously isolated.

Regina Scully: Absolutely.

Geralyn Dreyfous: They're not always able to disclose the existence of the illness or able to disclose their own issues. That role of the caretaker is always second.

Regina Scully: Right and there's shame around it.

Geralyn Dreyfous: Any resources or thoughts that we might share for families that are unduly isolated right now, but even more so dealing with their loved ones?

Mark Rapaport: There are a variety of different resources depending on the group that one wants to reach out to. The National Alliance for the Mentally Ill, NAMI is a wonderful resource and available. The American Foundation for Suicide Prevention is a wonderful resource that's available. The Depression and Brain and Behavior Association, [DBSA 01:48:49] is also a wonderful resource that's available. Then for individuals who are helping people with Alzheimer's, Alzheimer's Association and the Parkinson's Association really are very, very wonderful groups and they have support groups that are available through them. So go online because unfortunately now it's harder to go in person. These groups are there, they are good. Also many hospitals and medical centers have support groups available for family members of people going through depression, going through Alzheimer's disease or something like that.

Geralyn Dreyfous: Wonderful. Great. I think that seems... Wait a minute, there's 10 new messages. I'm so technically challenged to be running this Q&A, sorry. Yeah. Okay, great. Well, I want to just thank everybody for being with us on this beautiful Saturday and especially thank the University of Utah and Sundance for really putting these two worlds together. So thank you very much for inviting us to be part of it and for all your questions and for the support that you give the university and you give Sundance. It means a lot. It makes living in Utah a real special place to live.