BREA: I had no energy, skills or resources when I began. I think what guided me was just a really clear vision and determination. Both for what the film would be and what story it would tell and where we would go. In some ways, I think I'd always hoped we'd end up here [at Sundance] because it was the only film festival I'd ever heard of.
Brea has what’s commonly called chronic fatigue syndrome– the official name is myalgic encephalomyelitis (ME). In the film, she spends most of her time in a wheelchair or in bed. Her symptoms also include a profound sensitivity to noise, so she wears earplugs all the time. And when she becomes especially fatigued she can lose the ability to fully form words and is in severe pain.
All of this is documented in the movie as are the day to day lives of other people living with ME. Brea ingeniously interviews them while they're in their beds via Skype from her bed. The film opens in New York on September 22 and in Los Angeles on September 29.
Below are excerpts from John Horn's interview with Brea and Wasow. To hear the full conversation, click on the player above or get The Frame's podcast on iTunes.
On the importance of making her story known:
BREA: It is always really hard to travel and to do anything, but it's so important for me to be here. I think, in part, because it's really meaningful for me and to Omar to be at Sundace. I also think part of what has allowed this disease really to remain under the radar - especially those at the severe end of the spectrum - is that we can't be seen in public spaces. We can't leave our homes, so no one knows we exist. That's why to me it really matters to be out there. So I can be seen, and people can know me and can understand that this is a really difficult disease and that I do struggle with it.
On the challenges of physically making the documentary:
The first question was raising money and I wanted to do a crowdfunding campaign because it was the only way I thought I could get any funds for the film. But it was really hard because at that point, I could only shoot one day a month. So I would shoot one day, then I would crash in bed for 29 days and shoot one day. So it took me six months to shoot six days to make this trailer.
On the technology used to make the film:
BREA: We tried to find technologies to help me be more present because in the outset when I wasn't there at all, it wasn't really working so well. So we used Skype and I would do interviews with basically a poor man's Errol Morris interrotron. We would broadcast my image and my audio over an iPad that was reflected over a lens. So that allowed me to have these really intimate conversations from my bed with other patients who are also in their bed. And then we had a live camera stream coming from our camera on set. But at the end of the day, I also just had to trust the instincts of the people who were actually there. To this day, I still haven't been in any of the homes of any of the people who are in this film
On Brea's insistence that her pain be documented:
WASOW: There are definitely moments where my reflex is to help and she's saying, "No, let me suffer here on the ground and document." It feels antithetical to how I was raised and all my values. So that was hard. In particular because, at any given moment, I don't know if I'm not helping her, how much worse could it get. On the other hand, there were moments in the making of the film where we interviewed somebody who described an experience that was so similar to something weird and painful that Jen had experienced. And in those moments, I began to appreciate [that] unless this story gets told, we're going to be suffering in silence.
BREA: This is a conversation I had over and over again with our cinematographers and Omar. Even with them, the instinct is to help. In those moments, oftentimes I can't communicate. So my conversation with them was, in that moment, there's actually very little you can do to help - to ease my pain, or make it go away. In that moment, the presence of the camera is the greatest act of love. So if everything is falling apart and I'm screaming and things are bad, come closer. Because that minuscule awareness I have that it's even there, it gives that moment the potential to mean something different. And to take a pain that would otherwise be private and useless, and give it the potential that [it could one day be shared and] mean something. And diminish someone else's pain.
On the willingness of other patients' to share:
BREA: [Jessica Taylor] is a young British woman who's been sick since she's been 14, has been bedridden for a decade. I think early on I found that really everyone who had agreed to participate in the film felt the same way I did, really collaborative in wanting those moments to be documented, stretching themselves. Everyone had these limitations, you know, Jessica could only be interviewed for ten minutes at a time, and she would rest and we'd come back again. Everyone wanted to kind of push themselves because we all had the same commitment to telling this story and to finally letting this reality be seen.
How she documents the truth of chronic illness in "Unrest":
I didn't want to tell a tragic story because that would not be true. I did not want to tell an uplifting story because that also would not be true. I think there is so much darkness and so much light in my life and in the lives of everyone in the film. And that was the truth...
In a fiction film the heroine gets sick. There's a vigil by the bedside weather she lives or dies. And people want that kind of finality. And I think that works in narrative but people with chronic illness don't get that. There is no end. Life just goes on. And that's okay too.