Unrest, Jennifer Brea’s feature-length debut chronicling her journey with myalgic encephalomyelitis (ME), otherwise known as chronic fatigue syndrome, had its sold-out Australian premiere at this year’s Melbourne International Film Festival. Brea fell sick while she was completing her PhD at Harvard, just as I to defer my studies last year due to the same disease. I wanted to interview Brea because I thought a similar lived experience would facilitate more nuanced discussion, and for entirely self-centred reasons as well, if I'm honest.
Brea’s video diaries form the basis of her documentary, like a secret she’s reluctant to tell yet wants everyone to know. Our physical and mental health are incredibly private spheres within the public domain. We divulge the details of this when we need help, but when there is no opportunity for medical intervention, a broader conversation is required.
Brea’s story evolves into an international narrative of medical oversight and cultural neglect. As the world-renowned geneticist Ron Davis states in the film, “Many of the people that are at the National Institute of Health [the primary funding body for medical research] have in the past not believed that it [ME] is real, so why would you fund something that’s not real?”
The narrative moves from the personal to the political when Brea finds herself in cyberspace – through platforms like YouTube, Facebook and Skype – connected to a community of millions affected by the disease. This virtual voyage around the world signals the pertinence of the Unrest VR (Virtual Reality) piece that accompanies the 90-minute feature.
When I ask if she ever felt blocked by the cinematic medium, Brea notes that, “It is in part a limitation of the visual medium. In some ways, it wasn’t visually obvious what they [ME patients] were going through. I think what I did try to do was to accept that I could try to bring people inside the mental experience of it.”
“The truth is not a Xerox copy,” Brea muses. “In film, we can have empathy. But this was deep, lizard brain, full-on physical visceral. It wasn’t emotion, it was emotion plus all of the physical experience you have when you’re there. You experience them directly. In general, that means that in VR you’re in someone’s memory and it’s a much more embodied experience.”
This challenges conventional ways of watching. By definition, VR is interactive, so you’re actively participating in the narrative as it comes along. Asked if she thinks there will be more engagement in the VR, Brea replies that it will be “more intense as an experience, but it’s never going to give you the context and the knowledge of the world that the film does”. She sees them as companion pieces.
This relationship between active and passive experiences is interesting in the context of living with ME, because your activity is restricted in a number of ways. “It’s an illness that essentially removes your ability to have effort,” Brea says. I often feel like a ghost hovering through a car crash; I can hear the sounds and see the images, but I’m disconnected from that world by “fatigue”.
I write fatigue in inverted commas because, as Brea says of the illness, “It’s a totally, categorically, different thing. If you’re exhausted, as a healthy person, you rest and then you feel better. We’re not actually resting, we’re sick. It doesn’t make you feel better."
As an example, if we count the weekend from 9pm Friday to 9pm Sunday, I spent 44 out of the last 48 hours in bed. I don’t have enough energy to move or make food, so my only option is deliveries or not eating. I’m periodically in a lot of pain, and I’m yet to find a doctor who can tell me why and how I can alleviate it. Hence the frustration Brea and I both feel towards people who are healthy and think they can identify with what living with ME is like, because they’re familiar with the word "fatigue".
ME creates a skeleton out of what you once were, and your ability to survive depends on your capacity to make peace with that skeleton. I mean survive in very literal terms – as the film points out, the leading cause of death for people living with ME is suicide. “I think your happiness and trying to live with this depends a lot on if you’re able to find your way back to something, even if it’s different to the life you thought you were going to lead,” Brea tells me.
Brea is no longer doing her PhD at Harvard, but she has made an award-winning documentary. I was late submitting my first-ever paid interview because this illness sometimes turns my brain to foam, but the good people at SBS have accepted a compromise. Now I’ve been published by a national public television network, and that’s pretty cool.
Amanda Jane Barbour is an alumni of the 2017 Melbourne International Film Festival's Critics Campus