“Whenever we are confronted as a society with an illness that we don’t understand, we put the blame on the people who are sick,” says Director Drew Xanthopoulos in an interview about the making of his trancendent, full length documentary about people inexplicably afflicted with environmental illnesses.
“People with multiple sclerosis, ‘Oh, you’re a hysterical woman.’ People with PTSD, ‘You’re a man with a weak constitution. Man up.’ People with AIDS, ‘Oh, you’re gay.’ What these things have in common are, before we understood the mechanisms of what caused these illnesses, we accused people of being their own worst enemy, the cause of their malady,” he continues.
“This illness, unfortunately, it’s the same thing. ‘It’s all in your head,’ that’s what most of these people have heard for most of their lives. I’m hoping that this documentary inspires discussion and more research, that helps break this pattern and holds a mirror to us asking, ‘Why are we so uncomfortable with the unknown? Fear being one of those things, obviously, but for a culture that celebrates how progressive and advanced and technologically and medically savvy we are, we still brush people under the rug we don’t understand.”
[Public Screening, Wednesday, April 26, 8:30 p.m., Regal Cinemas, Battery Park 11-4]
The who-what-when-where-why-and-how in the making of THE SENSITIVES is as fascinating as the movie about the lives of three families dealing with inexplicable health disorders that cruelly disrupted their lives and forced them into a loneliness hard to imaginable in this day and age. The stoicism of the characters, the cinematography, the storytelling and the story teller create a sublime movie experience that is ethereal and spiritual and will resonate with audiences long after the movie ends.
The setting is the American Southwest, serene, spacious blue skies and heavenly vistas of mountains and deserts. Like the West, it has a history of attracting people who want and need to get away from things. It offers a feeling of hope. There, Joe is too sick to care for himself and strains the relationship with his wife and daughter. Karen, an artist, and her twin sons, Sam and Nathan, have to live in and rarely stray from a sterilized safe home, yet the brothers dream of performing publicly the country music they create. Susie, driven from San Francisco to a remote Arizona homestead, becomes an activist and grows frustrated at the lack of help from influential political and medical communities. Xanthopoulos lived with these families for several years, creating telling portraits of their day to day lives.
Gregg Morris: Why did you get interested in a topic like this?
Drew Xanthopoulos: I first became aware of it from a photo essay in the New York Times by Thilde Jensen. She’d been working on a book. She herself was ill, is today still, but she recovered and so she wanted to show the experience that she had by documenting people around the country with this. The pictures haunted me for months.
I called her and I started asking her a lot of questions, and for every answer I had two more questions. I think it’s one of those topics that the further you get into it, the more interesting it is. You quickly realize that what’s interesting about it isn’t the illness itself, it’s how it affects normal people. Five years ago, everyone was worried early on, potential funders and everything, that we [he and producer David Hartstein] were just going to create a depressing exposé, which is tough to get people to watch you know? What was really hard to communicate was, first of all, if it was going to just be a depressing exposé, I couldn’t have done this for this long. I couldn’t have sat in that sadness.
What people don’t realize and hopefully the film communicates is that the illness itself is a thin layer on the surface, and just beyond it are people that are very familiar and are just like you and I. All the characters were just like you and I, not so long ago. Something happened to them and transformed them completely.
To me, the interesting part was how an extraordinary and unfortunate circumstance transforms people that are very recognizably us. They held on to their humanity. These are about artists and musicians and activists and grandfathers and spouses. I think that’s what adds levity and familiarity to something that could, you’re right, easily become a very melancholic exposé.
I’d just finished graduate school, I was a film graduate student at University of Texas at Austin. I was just finishing my thesis film in the program and I wanted to venture into my first feature film. I was looking for a topic. I knew I wanted to do a documentary, a non-fiction film. To me, documentary and fiction are complimentary to each other. One’s inhaling, one’s exhaling.
Documentary is inhaling. It’s taking in from the world, and to me fiction is sort of exhaling. They work together and I think you can do both. I felt like, and I still feel like, I’m in a stage of life personally where I want to take in. I’m interested in taking in from the world still. I was looking for documentary topics to try and explore things that were interesting to me and, again, I came across that photo. I say became a little obsessed. I couldn’t stop thinking about it. To me, for long-form storytelling, to be able to do it for that long you have to have fallen in love with something.
You have to be obsessed with it. There has to be a very deep passion you feel for a topic to pursue a story for so long. Otherwise you’ll burn out. Nothing short of that will sustain the energy and stamina required for this kind of storytelling for that, I think.
Gregg Morris: Two questions come up. The first one is, doing a project like this, how did it affect you personally and maybe how you dealt with it? The second one is, what’s happened to everyone after the filming was over?
Drew Xanthopoulos: here’s this interesting duality of … I love the American Southwest. I think it’s one of the most beautiful places in the world. I go there recreationally. I go there for my own pleasure. To be in a place that I associate with such beauty and peace but be working with people that are lacking peace, that kind of duality was interesting and to me brought depth to a place that I already was in love with.
The American West has already been a place where people, historically, have retreated for one reason or another. Or, modern Americans have. People with, what … used to be called Consumption. Tuberculosis. People with tuberculosis fled to the same parts of the country because it was the cleanest air in the country. People of different religious sects fled to the American West. This has been historically a place where people have fled and to find respite and refuge. I had always loved those stories.
People who were … The Scots that first arrived to colonial America. The Scots that came to the American West, they were also a minority that were repressed and they pioneered manifest destiny because they were marginalized in the communities that the British and American colonies. Anyway, that region has a history of being a refuge for places. In a way, there’s something very romantic about their story that feeds into this legend of the American West, that there’s a reality in it that’s anything but romantic. It is incredibly tragic also. It’s kind of thin connection, but to me there actually is something. They are a part of the long lineage of people that for some reason or another, this region provides refuge. From social or environmental reasons, it’s still a place of refuge.
Personally, it’s a life changing experience. There is no clean line between work and life in what we do as artists. I mean, to gain trust and access to people whom you’re asking to let you witness and document the most vulnerable moments in their lives. We’d have conversation with the camera. Obviously it wasn’t rolling, but we’d have conversations about where I was personally in my love life, my friends, my family. They knew as much about me as I was learning about them. It was a necessary and natural part of the process. The fly on the wall isn’t to say they aren’t familiar with you, it’s simply that they’re so familiar with you that they’re not aware of your presence anymore. They’re all friends.
Making this film was a right of passage as a filmmaker, as an artist, because it taught me how to balance my own empathy and my work.
I have to maintain objectivity, but I also have to maintain empathy and those are two things that aren’t often mixed. I think as soon as you lose empathy for somebody, you shouldn’t be working with them anymore. You should not be documenting them. You’re not going to do their story justice. There has to be something relatable about them.
Even if who you’re documenting is a terrible person, whatever your story is. I believe as a storyteller, and we’re not talking about journalism here, as a storyteller I think there has to be something relatable about them to you to do them justice. As storytellers, we need to create bridges of empathy. That’s what we’re doing. That’s all we’re doing, creating bridges of empathy. If you’re not doing that, it’s disposable. It’s nothing. You’re not doing anything of value.
Gregg Morris: What’s happening in their lives now? Have they seen the film yet?
Drew Xanthopoulos: Yes. They were the first people to see the final film, absolutely. That was necessary for me. If they felt like I was doing them a huge injustice, if they felt when the film was over, ‘That is not what happened. That is not what my life is like. That is not representational of my story.’ If they felt that, I wouldn’t have released the film.
Gregg Morris: I was thinking about the scene between the daughter and the mother talking about dad.
Drew Xanthopoulos: I think this film is very hard. I think it’s really difficult for Joe. It holds a mirror to him, it hold a mirror to everybody. I also think Joe is … listen, I applaud the courage of … I would never let anybody document my life, I’ll tell you that. That they allowed me to do this and trusted me with it, that I would maintain their dignity but also be objective about their lives and what’s happening was immense. He’s a multifaceted human being. Whatever character flaws he might have in that movie are universal so it makes him human. Anybody can relate to that.
Gregg Morris: He wasn’t there when they were talking about him and then he sees it. I was interested in how …
Drew Xanthopoulos: We talked about it a little bit. When I showed them the film, I think it opened up a part of their history. I think we, what is it called, we sugar coat our memories. Our memories become sweeter the older and farther away we get from them. The blessing and the curse of having yourself documented is you can revisit it and it’s not going to get any sweeter.
The documentary is going to show it as it was in that moment. I hope that that provides a kind of catharsis for their family, of being able to revisit something, the most traumatic period of their lives. To revisit it and to be able to see it from an objective lens and to continue to work through the traumas of all that.
Gregg Morris: What was some of the most, once you got started, challenging aspects of making the movie?
Drew Xanthopoulos: The most challenging aspects, I think, was working alone in the field. It was a one man band show for shooting. David [Producer David Hartstein] was always there a phone call away for support and advice in what was going on, but a phone call away is impossible when I can’t turn on my phone in the most cases, when I’m with them. The reason being that I had to take extraordinary measure. I had to prepare my clothes a certain way, there’s a lot of personal prep, personal hygiene, all these kinds of things to work with folks.
For me to ask a sound recordist to do this, would have been very difficult and impractical. Also, forget the logistics of that. To me, the quality of the intimacy you’re going to capture is related to the ratio of crew to subject. Most of these people were one or two at a time. For me to have two or three people filming one person or two people, I think it would have lost the intimacy. You would not have the same intimacy. It was just me, they knew me, they became familiar with me, I was the face that came every time. I can’t have the same sound person every time, to book them. It would have been a disaster. It would have been a different documentary.
Gregg Morris: It had the look of a big production crew there. [By big, I was thinking at least three additional crew members. His answer made me feel I have to see this film at least one more time.]
Drew Xanthopoulos: I think what you were seeing is somebody who’d put in the time and got to know the people and the places intimately so that the dance was organic. I think a great cinematographer becomes familiar with the actors or the documentary subjects that they’re working with so that really what you’re reading is body language. Because it’s visual, but there’s a lot of audio cues and having to, listening what their saying of course.
You’re reading someone’s body. You’re reading their face, you’re reading their body gestures. When you become really familiar with someone, you’re instinctively anticipating what their body’s going to be doing, what they’re going to be saying, what they’re doing. It’s very subconscious and it becomes a dance or a dialog. You become fluent, you understand the language of their body fluently and you can interpret what they’re saying. That can come across as having control over things. It’s anticipating knowing what that is.
Fiction directors do the same thing. You have a script in your back pocket, so the words and everything, but suddenly you have a real person who’s gonna’ ad lib a little bit and improvise. You have a real environment. You can’t control the weather. It could have been sunny and they could have been saying two words, but suddenly there’s this incredible organic thing happening between two live actors and it’s raining outside, as a director you better be so in tuned with your characters and your actors and your story to where you can roll with that and you can anticipate. It becomes organic, it becomes real.
The greatest performances you see on screen I think, feel real because there is this … The director understands their language fluently, of their bodies and their person and their characters and all that.
Documentary to me is, I’ll humbly say, I think it’s the highest form of that type of anticipation and reading someone else in what’s going to happen ’cause there is no script. You kind of are expecting something to happen. I walked in having some idea of what going. I knew they were going to get in the van that day. I didn’t know how or when exactly, but I knew that was going to happen. I had no idea what would happen after that. I kind of knew where they were going to drive, but it didn’t matter. I think as a professional witness to people’s lives, what I’m doing is getting to know their lives, their languages, their bodies, everything. I’m getting a little ahead of you with all this stuff.
Gregg Morris: Has the film changed their lives in any way?
Drew Xanthopoulos: I’ll let them speak for, actually, they can’t speak for themselves right now. I think it’s safe to say it has. I think the process of having someone … Yes, it has. I can compensate in this regard. One of the most difficult things about this condition is the lack of validation in the outside. To have somebody who is not ill or doesn’t have any personal connection to this illness care about your story to where they’re with you for three or four years, keeping tabs on you.
Even after the filming’s over, I’m in touch with everybody. These are people I care about. To have that is extraordinarily validation. To have somebody around you who’s talking with you about baseball and music and not the illness. Think about it, if you come cloistered in a community of other people who have this, how it naturally happens, you lose touch with more typically interactions. You’re just shooting the shit about stuff that just makes you, you. Your identity. To have someone else come in, interested in the illness but more interested in your identity beyond the illness, I think was cathartic for everyone involved in the project.
Producer David Hartstein: Yeah. I worked on a few documentaries, just having that validation like you say. There’s an automatic, I don’t know, maybe not automatic. There’s an additional level of self-reflection I think that begins to happen because of that. I think the subjects then seek to transcend whatever they’re in. Why the film got there and the filmmaker got there in the first place.
Drew Xanthopoulos: Even beyond the illness, these are some of the loneliest people I’ve ever met. When we were doing a Kickstarter we had a slogan we were throwing around, “Isolation is the worst symptom.” It truly is. To have somebody take the time to witness your life validates your existence. That sounds a little hyperbolic, but for people who are … I mean, there’s a high suicide rate with people on the far end of the spectrum of this condition.
I should note that, it’s important to mention that people in this film are the far end of the spectrum that includes people who, you probably know people who get headaches if they get stuck in an elevator (with passengers wearing) a lot of cologne, a lot of perfumes, or people who just … an office that’s been newly painted. They get headaches or sort of dizzy or they’re not able to think straight, but as soon as they leave they’re fine. These folks are part of a spectrum, that’s all. They’re highly functional.
The people in the documentary are some of the most extreme people on the spectrum for whom they don’t recover for whatever reason. They continue to down-spiral, and they are forced to leave their lives. Can you imagine 20 years of isolation? To have somebody care about what’s happening to them … somebody comes into your life and starts asking you questions not just about the surface level, but wants to get to know you, I think is uplifting.
Director: Drew Xanthopoulos
Cinematographer: Drew Xanthopoulos
Editor: David Fabelo
Producer: David Hartstein
End of Part 1
Gregg Morris can be reached at firstname.lastname@example.org