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Unrest review: an intimate journey

By Siobhan Simper

Have you ever seen yourself onscreen? I hadn’t – until I watched Unrest. From the opening scene, when a desperately ill Jennifer Brea tries to force herself up onto her elbows but fails, falling to the ground again and again until she finally manages to crawl into bed, I knew this movie was about me. Not just me, but the millions of people around the world who suffer from the debilitating medical condition, ME/CFS.

“It was like I had died, but was forced to watch as the world moved on … it’s like I don’t even exist, like I never existed.”

Unrest follows the story of director Jennifer Brea, her husband Omar, and others around the globe living with ME/CFS. Initially shot from her bed, Brea uses a novel teleprompter technology to interview bedbound subjects such as Jessica in the UK, bedridden for 8 years, who celebrated her 21st birthday by sitting upright for 5 minutes; Leeray, whose husband of 14 years left her when she fell ill; her daughter, Casie; and Whitney, former travel photographer who now lives in a darkened room on TPN and hasn’t spoken for a year.

The intimate shots transport the viewer directly into the lives of its subjects by streaming right into their bedrooms. Interspersed with old home video footage, this approach allows them to tell their own story, their way.

This is not an insignificant point in a world where movies about disability tend to be written and starred entirely by able-bodied people, which naturally fails to accurately reflect the lived experiences of people with disabilities. As Brea notes, stories of illness in the media only ever end in triumph or tragedy. Her film empowers its subjects (herself included) to be the architects of a new narrative.

“What terrifies me is you can disappear because someone is telling the wrong story about you, and I feel like that’s what’s happening to all of us who are living with this.”

Unrest also takes the viewer on a political and historical journey, exploring the disturbing likelihood for women with chronic illnesses to be dismissed as mentally ill or hysteric – a practice which still continues today. Particularly poignant is the story of Karina Hansen, a young Danish woman who was forcibly removed from her home by police officers and imprisoned in a mental facility for over three years, prevented from seeing her family.

Brea emphasises that Unrest is not about recovery, but a film which explores the question: what does chronic illness do to your identity, relationships and life possibilities? In doing so, it manages to tell a compelling love story, to be a cry to action, and to draw you closely into the lives of its interviewees, while avoiding all the tropes commonly associated with films about disability.

Despite its harrowing subject matter, Unrest is ultimately a movie about hope. Not only for those telling their stories in the film, but for other aspiring disabled filmmakers. Unrest’s success at film festivals such as Sundance is testament to the fact that people with disabilities can tell their own stories, and tell them well.

Brea’s parting lines “I am still here, I am still here” is both an assertion of her tenacity and a cry to be heard. And with the debut of Unrest, we are listening.

Unrest is available on iTunes and at selected screenings (see www.unrest.film/screenings for more).

Siobhan Simper is a psychology graduate and ME/CFS patient from regional Victoria. She writes at chronicallysiobhan.com.


11 comments

  1. Jenny Meagher

    Thank you Siobhan for your personal response to the film Unrest. I also saw myself on the screen. My daughter and I both suffer from Myalgic Encephalomyelitis (ME/CFS). To see our lived experience reflected in the movie was a very powerful acknowledgement. To see that we do not suffer alone was very inspiring. Most people know somebody with ME/CFS. Unrest offers a unique opportunity to understand this invisible disease.

  2. wam

    The fact is we are driven by the law of gene passing which has a bottom line.
    Nature decrees man must deposit and woman must receive to continue the species.
    Altruism, more or less, dodges in between sex, birth and death.

    We have had 3 friends on the cancer zone and the organising of visits are stretching down to once a week.
    .
    The back of the mind may worry but is quickly switched off.

    Will artificial living evolve?

  3. diannaart

    Thank you, Siobhan Simper.

    I have ME. It started slowly in 1996 after a severe viral illness (Epstein Barr Var.) and has steadily worsened, year by year. I am not as debilitated as some, but am unable to work even part-time as I used to.

    I already knew about this film, “Unrest” (really good title BTW). I will not be going to see it. The people who need to see this movie are those who either don’t have the illness but are curious and those who think ME is just a “yuppy flu”.

  4. diannaart

    Gawd, what an underwhelming response. Not just women get ME, men do too and children.

  5. Michael Taylor

    I thought you’d like this piece, Dianna. I thought of you when it was published. 😀

    At a meeting about Lupus I went to when living in Canberra, the specialist giving the talk suggested that nobody in government is going to care about Lupus until, quote, “a minister’s wife is diagnosed with it.”

    I know where you’re coming from re the “yuppy flu.” Myself, I was sick of hearing “you’re just lazy” or “it’s all in your head.”

    Ignorant fools.

  6. diannaart

    Thanks Michael.

    Lupus like ME is an illness of the autoimmune system, along with MS, Crohn’s, Fibromyalgia (although some medics classify FB as a symptom of autoimmune disorders) and, in my personal opinion (for what that’s worth) such illnesses are increasing.

    I get told, “but, you look fine” a lot – because people only see me when I am well enough to go out.

    Just today I turned down an invite to a neighbour’s house warming, because I couldn’t guarantee I’d be able to get there. I used to be very active socially, physically and well able to turn my hand to most any kind of work (although I did draw a line at microsurgery). 😉

    I am fully aware that many people thought me a malingerer – hmmm, note to self, take selfies when really, really sick and upload.

    I have also eaten, drunk every new “super” food and supplement that makes the news. They do not work – and I spend a lot of money trying very hard to give the SF a chance.

    I can’t believe that over 20 years ago I thought that all I needed was just a few months rest from my busy life. Puts the truth into the saying “Be careful what you wish for”.

  7. Michael Taylor

    Dianna, there are a couple of good ‘natural drugs’: Black cumin seed oil and Flaxseed oil.

    I’m no medical expert so I usually hesitate in giving out advice, but if you get a chance do some research on black cumin seed oil (also called black seed oil).

  8. diannaart

    I will check it out, Michael.

    Black cumin seed.

    🙂

  9. Freethinker

    diannaart November 27, 2017 at 6:29 pm
    “Lupus like ME is an illness of the autoimmune system, along with MS, Crohn’s, Fibromyalgia (although some medics classify FB as a symptom of autoimmune disorders) and, in my personal opinion (for what that’s worth) such illnesses are increasing.”

    I share your view about that the autoimmune disorders are increasing and I just wonder if they are in the genes, are more common because environmental factors or a combination of the two.

    Fibromyalgia it is terrible as are any autoimmune disorder and the best doctors to see are those that are suffering this disorders or have a love one that has.them.

  10. Fiddie

    I have mixed emotions about this film. It is certainly well shot & edited (thanks to early feedback of Chicken&Egg and Sundance) but… it never properly defines the illness. Why praise this doc when in only reinforces the failure to properly define the illness?

    In fact, it propagates a common misnomer which allows time for the doc to focus on emotional turmoils… which, while making for a better & possibly more profitable documentary, surely injures many thousands of persons afflicted with ME or are burdened with the CFS label.

    How can a cure be found if research is not done on the specific illness, but instead is carried out on a group of illnesses which are superficially similar? That is the confusion which Unrest is adding to.

    “ME is not CFS. By CFS, I am of course referring to the diagnosis Chronic Fatigue Syndrome. Everywhere you go, you see the two names combined. Many patients themselves abbreviate their illness as “MECFS,” “CFS/ME,” etc. This is incorrect. Doing so hurts literally hundreds of thousands of people around the world.” DocumentingME.net/2014/01/31/me-vs-cfs-theyre-not-the-same/

    By all means, if anyone likes the film Unrest, talk about it. But please be aware that it shy’s away from facts in favor of the emotional journey. This film accomplishes nothing if the facts of ME are prominently disclosed. I’m sorry if any are offended by my remarks, but I believe a documentary should point towards a solution to a problem – not reinforce myths.

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