My wife and I watched Unrest last night.
*** A few spoilers ahead ***
We had seen some early footage of the film some years ago, so knew going into it that the story she wanted to tell would be different than the story we would want told. But, having interacted with Jen on several occasions and having seen the reaction the film has received, expected the film to be at least great, even if different from what we wanted. We both came away disappointed. Our reaction seems to be well in the minority, but I wanted to share what we felt.
There were a number of things that I personally found odd or surprising, but what shocked me the most was how poorly the movie expressed what the disease was to viewers. While you gain an understanding of the disease from the stories of the various patients, including Jen, there was never any one point at which the documentary described what the disease is. This leaves viewers with a nebulous impression of the disease, where we desperately need clarity. More shocking, to me, was that, unless we missed it, there was never any clear explanation of what PEM is and how it differs from other diseases. The first reference to PEM is in a patient’s tweet about five minutes or so into the movie and the closest description of the symptom is probably in some footage where Jen takes an exercise test, which is perhaps 30-40 minutes into the movie. For a disease that has been held back because it has been painted as simple chronic fatigue, not discussing clearly the core symptom is baffling.
The decision of what content to focus on is of course an editorial choice and Jen’s, but we were surprised that there was no mention of Rituxan or interview with the Norwegians, no discussion of PACE, and so little discussion of the science behind the disease. My wife particularly found this surprising as she has found that people with whom she discusses my illness respond most to the story of Rituxan (a drug I have been taking for four years) and the community’s inability to get funding for treatment trials six years after that first big study, as well as the story of PACE, where the authors perverted the definition of recovery so much that you could worsen during the study and still be classified as having recovered. Everyone is different and we all have different motivations, but, to us, these aspects of our history are the most compelling aspects of the situation. We felt leaving them out misses some easy opportunities to sell viewers on the biology of the disease and the outrageousness of how we have been treated. My wife was particularly upset in this regard because she felt that the documentary did not live up to the original kickstarter’s apparent intention to focus heavily on history and science.
The story of this disease, of course, can be told in many different ways and I don’t think its unreasonable to have decided to focus more on the emotional side of things, as Jen did, but what surprised me aside from how the disease was described and the choice of content was how little narrative focus there was. My wife and I both felt as we watched that the movie attempted to cram in too many diverging elements, and that doing so not only made the movie less cohesive than it should have been, but significantly lessened the impact of its heartbreaking and brilliant moments.
It felt to me that the movie wasn’t sure whether it wanted to be a movie about how a couple copes with chronic illness, a movie about how ME patients have been treated by society and medicine, a movie about how patients try to survive the disease, a movie about the history of ME, or how patients are trying to advocate for the disease. There were just so many elements and none felt fleshed out enough to have the impact that each would have had had there been more focus. ***SPOILER*** I felt this particularly during a moment where Leeray’s husband explains that he left his wife after many years of her being sick, but continued to provide for her financially because he felt the illness must be psychological and that the best thing he could do for her was to put her in a position where she would have to start being active again. It’s an absolutely devastating, heartbreaking moment, but the movie moves so quick and covers so much territory thematically that the scene loses much of its impact. And there are a number of moments like this throughout the film that shine, but aren’t given enough time to breathe, bits and pieces of Jen and Omar’s relationship, how Karina’s parents reacted and coped with her sectioning, parts of the section on the millions missing protest.
Relatedly, the movie felt a bit scattershot. There was a protracted section where Jen goes to a Princeton reunion that was meant to demonstrate noise sensitivity and, I suppose, PEM, but the overloud noise of the parade isn’t given enough explanation to make clear whats happening and why the volume has suddenly increased significantly. Another section focuses on all the crazy treatments patients try, but seems to fail to delineate between a number of clearly sham treatments, like lightning process, with potentially more useful treatments, such as mold avoidance and supplements and antivirals. In the same segment, Jen sets up a tent on her lawn with Omar to test mold avoidance and the film spends 10-15 seconds with Jen being short with Omar about how he should go shower and change again since he had just dipped into the house for a minute, which could be contaminated. Watching, I was unsure what lesson to take from this, the frustration and difficulty of caregivers supporting their spouses, the frustration of trying such bizarre treatments and not knowing what is enough or good, something else?
In short, there are some moments of brilliance in this film, and it feels like there is an amazing and truly transformative film that could have been made from the footage that was collected, but there wasn’t enough narrative focus and there wasn’t a clear enough explanation of the disease, early on, to really anchor the stories told throughout. Clearly, the film is building awareness, but I, personally, wouldn’t want to try to use it as an educational project, because of how nebulously it describes the disease, and I’m thankful that journalists are beginning to understand the situation enough to give the context that the movie does not.
