Spoiler alert: This review discusses some specific scenes from Unrest.
Edited to add: No, really! There are SPOILERS here! If you want to see and experience the film with a blank slate, then go see the film and come back here afterwards to share your thoughts.
Unrest, Jen Brea’s much anticipated film about ME, premieres in select US theaters on September 22nd, and expectations are high in our community. For the first time, people with ME will be represented on the big screen, and then on PBS in January 2018. I’ve had the opportunity to preview the film, and it was an intense emotional experience. The open question is how non-ME literate audience members will respond, and what conclusions they might draw from the film.
As I noted during Brea’s Kickstarter back in October 2013, the quality of storytelling in the film would be its strength. Brea says in the film that we are “constantly telling ourselves a story about who we are and where we are going.” Brea made distinct, conscious choices in telling this story. The focus of Unrest is primarily Brea’s personal journey with ME, supplemented by the stories of Jessica, Leeray, Karina, and Whitney.
There is no doubt that Unrest is a beautiful film. The visuals are gorgeous, and the soundtrack is absolutely wonderful. I am not at all surprised that Unrest is winning prizes at film festivals, and it clearly merits the theatrical and television release. As “just” a movie, Unrest nails it.
Unrest clearly portrays ME as a serious disease, not just fatigue. The movie opens with Brea filming herself as she crawls across the floor because she is too sick to walk. Brea manifests many neurological symptoms, and allows herself to be filmed in her most vulnerable moments of crashing. The depth of suffering experienced by each of the featured people with ME is clearly, even shatteringly, conveyed. I was also moved by the imagery Brea used to show what it is like to have your life shrink to the boundaries of your bed or your home. She says, “It is like I had died, but I was forced to watch as the world moves on.”
In choosing to focus on personal narratives, Brea necessarily excluded many other stories. Anyone who comes to the film with a checklist of what they want to see in a film about ME may be disappointed. Unrest does not discuss the controversy over case definition. There are hints of the problems we face with CDC and NIH, but no mention of recent political controversies like the National Academy of Medicine report, Pathways to Prevention, or the CFS Advisory Committee. The science of ME is discussed primarily by Dr. Nancy Klimas and Dr. Ron Davis, but briefly. The same is true of treatments, although Brea does an excellent job of portraying all the things we try in our desperate search for answers in the absence of large scale research. The PACE controversy is glaringly absent. There is also a brief but powerful discussion of the history of hysteria and conversion disorder, accompanied by a tortuous sequence of vintage photos of women suffering from illness.
Any one of these missing or briefly discussed themes would require an entire film to adequately explore. Brea chose not to make those films, and I understand the choice. Her goal was to tell a compelling story that emotionally engages the audience, especially an audience that does not know anything about the disease, and she had to select the story elements that would accomplish that goal. I think ME literate viewers may find it helpful to remember they are hearing Brea’s story laid out for people who have never heard about ME, as well as people who think we are depressed, malingering, or tired.
It’s natural for us to want and expect to see our own stories represented on screen. I think, though, that we should be careful about these expectations. I heard a great quote on the podcast See Something, Say Something during a discussion about racial and religious representation in tv shows:
We’re happy to suspend disbelief for [white] shows and then when it’s a person of color, we’re like, ok, you must get every element of every part of my life exactly right or I will burn you.
We are a community of people who have been left behind. It is understandable that we want to see ourselves in this story. However, I don’t think the question is whether Unrest perfectly represents every part of our experiences of life with ME. The question is whether Brea is effective in telling the story that she intended to tell.
The emotional heart of Unrest is Brea’s relationship with her husband, Omar Wasow, and this was the part of film that hit closest to home for me personally. Their “normal” is not at all normal; the disease eclipsed the plans they had and the people they were. At her lowest, Brea says to Wasow, “I’m nothing. I can’t give you anything.” I have said that to my husband. Later in the film, Wasow tells her, “If I can talk to you, if I can hold you tight, I’m good.” My husband has given that gift to me for the more than twenty years I’ve been sick. And ever since he had his stroke, I know what it means to offer that in return.
As Brea finds her way to living her new life, she says, “No one is coming, because no one knows I went missing.” She realizes that she has to fight on her own behalf. This is the seed of #MillionsMissing, and Brea showcases the activism that is now defining our community. The breadth of the international ME community is also acknowledged. It is empowering to watch, but it’s bittersweet against the backdrop of such ongoing suffering.
Despite how much she wants to be well, Brea says she could never give back what this disease showed her. She says she is grateful for every inch of her life. I think the one way the film’s storytelling could have been stronger is if she more clearly articulated why she is grateful for a life with ME. I worry that people who have never faced disabling chronic conditions will not be able to reconcile the depth of her suffering with her statement of gratitude.
I asked Brea about this after one of the film screenings. She said that in the early years of her illness, she felt like she was “falling down a deep well” and she only thought about how she could get out. But now she is so grateful to be alive and to have the capacity that she does have, much more so than she had ever been grateful for her healthy life. Brea said she is grateful for the lessons of this disease, especially the importance of focusing on her most essential relationships and experiences. Perhaps it is just my own personal interest in this transformation, but I wish she had spent more time on this in the film itself.
The audience of Unrest, at film festivals and on PBS, is not just the community of people with ME. Brea’s audience is people who know nothing about ME or who have misconceptions about it. If this film is the first (or only) thing that audience sees about this disease, what will they take away? What conclusions will they draw about all of us, based on this story of some of us?
I think that those who knew nothing before seeing the film will be shocked at the severity of the disease and the dearth of scientific answers. Those who hold harmful stereotypes about people with ME may not have their minds changed by the film. However, if a broader audience hears the truth about ME, it will be more difficult for the tired-depressed-get-some-exercise meme to hold sway.
Brea says, “You can disappear because someone is telling the wrong story about you.” Early in the film, as we watch Brea struggle to crawl or sit up, she says she is filming herself because “someone needs to see this.” Incredibly – amazingly – Brea has succeeded. People will see this, and I hope they will be as moved by it as I am.
Disclosure: I was interviewed for the movie, and appear in a brief cameo with Wilhelmina Jenkins in the final version of film. I supported the Kickstarters Jen Brea conducted for the film and the #TimeForUnrest campaign. I have received no compensation for either my interview or this review.