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.
Photo courtesy of Unrest.
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.
Does it show the up and down for most of us, that we can occasionally go somewhere and function temporarily but then be crashed for days? I think it’s good to show the severity, but if someone sees portrayal of severe then comes across a person with a moderate case, there will be a cognizant disconnect and that person may be thought of as exaggerating because their shopped ng at the grocery store doesn’t match the images of severe patients that have been seen. Can’t show it all, I know.
Also, I’m glad she stayed away from definition and other controversies. That’s our issue. The public won’t care or understand.
All the people with ME portrayed in the film are shown at pretty severe levels. But Jen herself goes up and down in function, partly in response to some of the treatments she tries.
I’m puzzled why you say, “For the first time, people with ME will be represented on the big screen, and then on PBS . . .” Kim Snyder’s “I Remember Me” came out in 2000 and appeared on PBS (the following year?). Roger Egbert’s review of Kim Snyder’s film is here: http://www.rogerebert.com/reviews/i-remember-me-2001 . I believe you can see “I Remember Me” on youtube.
Was that film shown on PBS??? I have no memory of that!
Well, somewhere I have a VHS tape of the film recorded from tv. I was thinking it had been on PBS. I may be mistaken. A friend recorded it for me. Perhaps it appeared on a cable arts channel. I’ve googled but haven’t come up with evidence. I did see that another one of Kim Snyder’s documentaries, “Welcome to Shelbyville,” appeared on PBS on Independent Lens.
Great detailed analysis! You made excellent points. Film just hasn’t the time and space, and audiences are fidgety. And glad you got a chance to be in it! Looking forward to seeing you there.
I supported the Kickstarter, and will watch the movie when I get the DVD. I lack the energy to go to a screening. Ironically, I live 30 min. from Princeton.
No movie is perfect – and I’ll probably think many of the things you thought when I see it.
It is a stupendous use of Brea’s Princeton education and contacts, and a huge accomplishment. It is visually stunning because she is also a beautiful young lady (which never hurts in gaining sympathy for a disease). So many of us aren’t, which is one of the extra blows: you can’t stay fit, and do the things which would keep you visually appealing, when you can barely manage a shower now and then. Clothes, haircuts, manicures… everything takes so much energy!
I have my usual tiny quibble with video forms: because they show you everything, you do not engage with the characters in the same way, because your brain doesn’t have to make the effort to translate from black marks on a page. The most that is accomplished for someone who doesn’t have ME/CFS is a deep sympathy for her. I think written fiction (yeah, like mine – I said it was my usual caveat) is much more strongly capable of eliciting empathy than visual fact. (https://liebjabberings.wordpress.com/2017/09/07/fiction-the-second-best-path-to-empathy/). Obviously, gaining empathy by the first best path (direct experience) is available only to a few (wish it were none).
The forms are complementary. I’d love that kind of connections. Her message will be seen worldwide, and should be. But it’s going to take a lot of hammer-blows to bring the kind of change we need as a community.
I’m happy to provide a review copy (review optional) to anyone who would like to try the second best method. I’d like to do my bit for our mutual cause.
I have not seen the film, but this seems like a very fair and well articulated review. And we have to look at how non-ME people will be informed – will they come away with greater understanding, will their (possible) prejudices be dented/diminished? It seems like the film definitely goes some way to portraying the catastrophe of ME, albeit through a very personal lens (no pun intended).
I *am* concerned, however, by the lack of mention of case definitions as the conflation of criteria has *undoubtedly* added to the burden of suffering of ME patients across the world. PACE has only been possible because classic ME was effectively ‘disappeared’ and confused with broader definitions – and reframed as CFS – in the early nineties in UK. With the result, none of us with an ME/CFS label know any more who has what illness – it is utter chaos. (Of course, because of PACE and its architects/supporters the UK narrative is somewhat different than the USA narrative, though PACE has had nefarious influence all over.)
I am also concerned by anyone who would be grateful for ‘lessons’ of this disease, I know of no one with classic ME – in my case, Ramsay-defined ME – who would be grateful. We all wish we’d never had this catastrophe punch into our lives in the first place. I associate ‘lessons’ with someone suffering from burn-out, for example, though I know Brea was much more seriously ill than burn-out.
Still, as I have not seen the film I must withhold judgement. I really hope it *does* inform – and that viewers come away wishing to learn more about the physical devastation and the politics and history of the illness. (You simply cannot separate this illness from its political context.)
In the eighties, we had a handful of very good ME doctors in UK, some of us actually got the appropriate diagnosis. But, of course, Brea cannot possibly tell everyone’s story, she is telling her own – and I am glad that very severely ill patients are also included. But because of the way the illness has been traduced and misrepresented we would probably need a completely separate documentary to wholly explain the politics.
I think we need dozens of films to cover all the important aspects of this human catastrophe. Like you, I had concerns about the framing of “gratitude.” I have now seen the film three times, and I was glad to have a chance to ask Jen about the gratitude angle after one of the virtual screenings. She says in the film that we have to hold two contradictory ideas in our heads – that we want to be well, and that we also want to love our lives (I’m completely paraphrasing that). I’ve struggled to hold both ideas in my head, and I do wish she had spent more time on explaining her gratitude in the film. My worry is that the audience might interpret the gratitude as an out for themselves – oh, she’s grateful so there’s nothing I need to do here. I can’t gauge whether people will draw that conclusion though.
Absolutely, Jennie! There are so many aspects to the narrative of this illness and many threads to be explored. Living in UK we are still very much challenging the horrors of PACE and the seemingly wilful ineptitude of NICE.
I think also the lack of belief around ME makes us a little ‘territorial’ – we are very much wedded to our own illness experience and must defend our own experience fiercely because of all the dreadful politics surrounding the illness.
It also goes without saying that number of years of illness affects our perspective, and age at which we fall ill. To fall ill at 18 is very different to falling ill at 28, to remain ill after 34 years is a much different perspective than to remain ill after 6 or 7 years and Jennifer seems to embrace the changes in her life positively, but then again she has had much improvement from what I can see.
Again, those of us ill in eighties/nineties also had a paucity of information and perhaps pushed ourselves to permanent disability. We cannot ever know why some of us remain ill for decades until research leads us to the mechanism of the illness.
Still, most of us with classic ME don’t improve so well after a handful of years – again this is where criteria and treatment and access to treatment varies so much – and there is no certain cure or therapy, so again one person’s story does not reflect another’s. All we know for sure is GET makes us worse, that seems to be universal in ME.
I reiterate that I understand your concerns re the gratitude framing. The illness has taught me much and has given me the role of observer, which is very useful for a writer. I am not bitter, and have been lucky not to have suffered secondary depression as a result of ME, but I could never, ever be grateful for lessons of this illness, it has diminished my life drastically and hugely.
I hope given that more severe/longterm cases of ME are included that an audience can discern that Jennifer’s gratitude is a very personal response to the illness and certainly not a universal response. All of us want/need research, research, research and we can only hope that things are changing slowly but surely – and hopefully the film’s platform can have a positive impact on research funding.
Being in Adelaide, South Australia I have not seen Jen Brea’s ‘Unrest’, I hope the opportunity will arrive soon. I am in a 4th decade with ME, and much improved from the first 14 years of serious illness. I can now venture out but still subject to severe perfume & chemically driven crashes. I understand gratitude.
ME totally changed my life, I lost 90% of what I used to do, work, sport, choir, socialising but in 4 decades some of that would have changed anyway, though not with such complete devastation.
So why gratitude? Lack of medical help sent me on a concentrated search for health, allopathy, ecological & alternative medicine, spiritual healing, meditation, challenging trips to India & USA in the ultimate search for meaning. Who am I, why am I here?
Again, why gratitude? I recognise the bitter lessons on route have become less bitter; the way I look at things has changed as gradually the gifts within each challenge became more apparent. Can I say that? gifts? without appearing totally mad?
I have dared to write about it, ‘Dear ME’ and I am profoundly grateful that physical sensitivity led to a transforming journey in mental and spiritual sensitivity too.
This was beautifully put, Audrey.
Thank you for reviewing this film. I am so, so grateful that Jen hasn’t wasted time on “boring” details of the history…The Centre for Disease Control has updated its website, the NIH is now doing high quality research. It is time to move forward and engage new researchers and a new audience. Jen does this brilliantly. For me I wish sensory intolerance to noise/volatile organic chemicals had had more of a focus as these are my challenges…BUT this is not my story it is Jen’s.
if it’s as good as your review then I wanna see this! whether be it in a movie theatre (it’s coming to Holland next month and I’m progressing but not thát fast) or on iTunes, usually I avoid ME docs to be honest, too confrontational perhaps?
tomorrow an appointment with an ophthalmologist since a neurologist couldn’t explain my twitches all over, including eyes, for me and maybe to lots of folks it’s clear that it’s a (viral) nerve thing, wish me/us luck!
I haven’t seen the movie Jennie, and the way things have gone, I probably never will. However, I am sure Jen will have done a good job.
M.E resists and punishes every endeavour. It is 100% anti-life. If I am grateful for anything, it is the sure and certain knowledge, born through shared experience, that it can be defeated. Life can shine though and darkness can end.
Every single moment of our lives is a victory over M.E.
Best wishes.
@batteredoldbook, @batteredoldpwme.
Thank you, Jennie. My wife and I just watched the film. I think your assessment captures its essence well.
One characteristic that you did not mention is that the film portrays the lives/struggles of patients with “Severe ME.” An uniformed viewer will likely miss the one or two minor references to what Jen refers to as the “spectrum” of symptoms. I have had a not severe form of the illness for 35 years. Still, my wife and I did see our lives portrayed in the film; we both were moved to tears. It really didn’t occur to me while viewing that “hey, that’s not my story.”
Thanks again for this on-point review and for all your good work.