So I watched Unrest

Omar Wasow carries his wife Jennifer Brea in a scene from Unrest.
There are many promotional stills from Unrest, but this gives me the most hope.

If you’ve been involved at all with the ME/CFS community, you will be well aware of the significance of the release of Unrest, the independent documentary by debut filmmaker Jennifer Brea about the illness. If not, it’s hard to overstate the important of this film for people with ME/CFS. Ours is a story that is not told in the mainstream media, or one that is so poorly represented that it usually makes a mockery of our lives.

That Unrest is a film not only about ME/CFS, but by people with ME/CFS (including the director/star Brea), is an astonishing fact in itself. Stories about disability are so often told by and for able-bodied people, so to see a film with disabled people telling their own stories is refreshing and, to me, a huge relief. (You can read more about this in my film review for The AIMN.)

When medicine has no answers for you, where do you turn?

So, I went into Unrest expecting to see a story about ME/CFS, from the perspective of people with the illness itself. What I didn’t expect was to see a story about me.

From the first moments, when Brea struggles to lift herself onto her elbows, failing again and again before she eventually crawled to bed, I knew that was me on screen – and potentially every person with ME/CFS who never thought they would see their lives so accurately depicted on camera.

When Brea is fine one moment at an event, then collapses, paralysed on the floor, that is me.

When she wails in pain, her hands to head, knowing her whole body and brain is on fire, that is me.

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. And then…what was the point of it all, being born in the first place?

When she can barely move along the hallway, speaking in monosyllables to her husband about what she needs, that is me.

When she cannot form words at all, the vowels rolling around her tongue, not able to complete the thought, that is me.

When she cries about not being a person anymore, not being a wife, potential mother, or human being, that is me.

I can’t be anybody’s mum like this…I can’t be anybody’s wife like this…I don’t feel like a person. I just…I am nothing….I can’t give you anything…I am nothing.

 

So, I urge you to watch Unrest. Not just because it’s about ME/CFS, but because it is a painfully human story, one that captures and reflects the lives of its subjects more accurately that I could have ever hoped for.

But don’t fear this will be 90 minutes of misery – Unrest is a powerfully told, intimate story about all aspects of the human condition, hope laughter, and love. The relationships that form between people when chronic illness hits are heartbreaking in their strength and devotion.

I’ll finish with the parting lines from my review:

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, Vimeo, Google Play, Amazon Video, Vudu (in certain countries, iTunes is the only option for Aussie viewers right now) and at selected screenings (see www.unrest.film/watch for more).

Author: Siobhan S

20 something, living in country Australia. Spoonie profile: ME/CFS, dysautonomia, anxiety. All about sewing, knitting and food. Unapologetic feminist and disability advocate.

6 thoughts on “So I watched Unrest”

  1. I don’t know if I could watch a film that related to my illness so intimately. I have such a hard time dealing with the intimate side of my illness. I try never to go there. It’s so depressing. So many emotions ran through me as I watched the trailer to this movie. I had MS 20 years before they diagnosed me. For 20 years I was told so much crap about why I should feel better. And that everything is fine- until I had a stroke, lost my vision, wet myself, and nearly died.

    When I was finally diagnosed at 40 my husband began to view me with disgust. I was less attractive now. So I am very envious of those with sympathetic other halves. I am so alone. I thought kids were resilient about these things, but I have a 38 year old daughter who still tells me that I am really the problem not MS. She says if I wanted to, I could?? (could have- had elaborate birthday parties, happy holidays, etc for her as a child- instead of MS attacks, pain, fatigue that I apparently made up- yeah right) The only bad parenting I did with her (other than “normal” parenting mistakes) was to spoil her into thinking she’s actually more important than she is. Meaning we are created equal. And she has enough faults herself, as I do.

    And so I guess we march on as best we can. Hoping those well bodied people don’t help us feel worse than we already do, by feeling so damned sanctified themselves!
    (((HUGS)))

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    1. Oh, Eliz, I am so sad to read this. I can’t believe you were undiagnosed with MS for 20 years. You must have suffered so much with no answers in that time. I am so sorry the way you have been treated because of your illness. Being chronically ill is very lonely, let alone having family members treat you terribly because of it.

      I’m sure you know already from the love you have for your many kids that you are NOT the problem, you are a beautiful loving person who happens to have impairments which don’t make you any less of an amazing human being. And thank heavens for online friends who “get it” and don’t judge ❤️❤️ you have my belief and support.

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      1. Thank You Siobhan. Yes! it is beyond wonderful! to have online friends like you, who get it. All those years I suffered alone were so overwhelming. And the majority of my children do love me unconditionally. I shouldn’t dwell on the few adult kids, who due to their unhappiness with their lives, take it out on me.
        I love your blog, I’ve read so much on here that helps me! Keep up the good work! (((HUG)))

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  2. I don’t have a CFS/ME diagnosis. My doctor doesn’t believe in giving CFS/ME diagnoses if a patient fails a tilt table. Parsimony of diagnoses since the symptoms overlap so much, but guessing that overlap probably makes it more important I watch not weird if I do?

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  3. Yeah. My doctor just won’t consider co-diagnosis if you DO have dysautonomia. For her, if you fail the tilt table you automatically only get a dysautonomia diagnosis. Even if you pass it, she still won’t diagnosis ME/CFS for patients unless they have lymph node involvement. It seems like that’s a stylistic thing with doctors – other dysautonomia orgs seen to list ME/CFS as a common cause of/co-diagnosis with dysautonomia on their website. I’m intellectually curious about the history of how the two are diagnosed and viewed as intertwined or not, but too overwhelmed to really research it. Someday, maybe.

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