Time for Unrest

January 14th / 2018
Enlightenment

This week has been the week of Unrest. As part of the Independent Lens series PBS broadcast the film last Monday, January 8th, and made it available for streaming all week. You can still watch it until tonight for free here. To find how to watch it after the January 15th, click here.  But the best news is that Netflix picked up the film and so you can now stream Unrest there! ​​​​​​​We’d love to get Unrest into Netflix’s “Trending Now” section today so casual browsers can see it and take a look. Views and reviews help. We can do it – with your help! 

I strongly encourage you to watch the film, as no review or summary can match the experience and emotion of seeing the film for yourself. 

Unrest shows what life is like living with chronic fatigue and depicts that existence so well and so powerfully.  Jennifer Brea’s brilliant film encapsulates so much. I can’t think of an aspect of living with this illness that she omitted. Her husband says, “what’s impossible to capture is just how hard this is day in day out.” But Jennifer Brea did a damn good job at capturing all of it – from the minute to the magnificent.

I, and millions of others like me, are so grateful to her for making this film. Our suffering and struggles go unseen. And as I wrote last summer for The Huffington Post, there are serious dangers to having an invisible illness. This resonated with so many that my piece went viral with over 17,000 likes on Facebook and nearly 5000 shares.

And indeed, Unrest ends powerfully with a screen of all of those who chose suicide rather than to live with this debilitating illness. Because we are invisible, brutalized, betrayed and dismissed. 

I hope that millions of people see this film because it’s a matter of social justice. We ourselves are too sick to protest and do 5Ks and to advocate for ourselves. That’s why Unrest is so important and essential viewing.

Unrest is one of 15 films under consideration for an Academy Award, beating out hundreds. If it is nominated and wins that will help raise awareness even more. Only when others see, really see, the horror and the treatment and the struggles we live with every moment, only then, can we have hope for change.

The documentary is heartening, and you’ll appreciate your humanity and health all the more. Still, it’s hard to watch. I cried and cried and cried and cried and cried. But I wasn’t alone. Social media is amazing way to create connection and community, and on Twitter, while Unrest aired last Monday night, I encountered others who feel, who struggle, who yearn, who rage as I do. And who’ve experienced what I have. That in itself was comforting.

This tweet from Cara Gael O’Regan, the host of the “In Sickness + In Health Pod,” a podcast about chronic sickness and disability, nailed it. Please give it a like and retweet it!  


Inspired by that brilliant framing, I wrote my own roster of types of tears.

1/ Sadness Tears

The movie over all was heart wrenching to see so many people who are depicted suffering with this illness. The Millions Missing campaign brought that home in effective very visual terms.  There are millions who are in an invisible darkness, suffering alone, unseen. Jennifer Brea says, It was like I had died, but was forced to watch as the world moved on.  And her husband Omar Wasow (whom I remember seeing on Oprah years ago!) said it was like being, frozen in sickness amber. She asks about life’s meaning when your life is like this, and what the point of it all is.  These questions are ones all of us who are sick ask ourselves.

2/ Empathy Tears

Jennifer Brea tells not only her story but others. Jessica’s story was just as powerful, and the discussion of water was so beautiful to me. We hear her in the beginning describing how she would use her imagination to stay sane and of how she loves the water and would love to go scuba diving. 

As I jump into the water and have that freedom of my body moving but there being no sound.

And then at the end we see her in a pool, floating. I just started sobbing, again. Water has been so helpful for me too – giving me that same freedom of my body, and because of that I moved to an apartment right across the street from the only warm water pool in my city. In fact, my swim coach was the one who recommended the apartment building, where until recently I had the help of a valet to get me food.

3/ Yeah That Tears

We have mixed feelings about our illness. The illness decimates so much. Yet it also wakes us up to so much. Jennifer captures that too ::

You have to be able to hold two things in your head. This illness destroyed my life. But what it showed me, I could never give that back. I want to be well. I want to wake up tomorrow and be well. And yet I am grateful for every inch of my life. I am still here. I am still here.

4/ Frustration Tears

A recurring theme is the frustration of those around the chronically ill person. Jessica notes that the nurses at the hospital were frustrated she wasn’t getting better. Imagine Jessica’s frustration! Ours! 

5/ Validation Tears

We all want conclusions. We want our stories to have arcs – a rise and fall or fall and rise. It’s tempting to twist reality to fit preconceived notions of narratives. To her credit and thankfully, Jennifer Brea does not do that ::

Before I got sick every book I read, every movie I saw said “when you fall ill, either you will find the cure or die trying.” It always ends in triumph or tragedy. But that’s not my story. At least not yet.”

In doing so, she validated my personal experience, and that was so moving and comforting. We feel upset that life isn’t simple and that doctors do not have answers or cures or even treatments. But the truth is, life is always complex. It’s just that those of us who live with chronic, complex illnesses know that up close and best of all.

6/ Me Too Tears

Jennifer also depicts Jessica’s family bringing a birthday cake and singing to her happy birthday. She notes :: 

For me, that’s a really difficult date because I think it’s another year in bed.

Just two weeks ago, I wrote about that same difficulty in my essay about how people with chronic illness can approach a New Year.  Milestones such as birthdays and New Years are challenging because they bring a reckoning of all we are not doing, seeing and having. I was so touched to witness her family celebrating her and her life and noting that her survival is a milestone worth celebrating. 

7/ Rage Tears

Unrest relays much of the history of chronic fatigue syndrome, and we learn how for a long time, the syndrome was seen as a form of polio. We are reminded how the Unites States’ Center for Disease Control outrageously dismissed a key outbreak in Nevada in the 1980s and used their time in the area, when they should have been investigating, to go skiing. And how Dr. William Reeves, the man who was in charge of the CDC investigation, ignored the evidence which set back research for decades and caused needless suffering for millions. 

8/ Protest Tears

We see protest in Denmark, which was so heartening. We see doctors who protest the fact that still in America, doctors are graduating from medical school without even being informed about this illness or how to look for the diagnostic criteria. The film asks why is there this void of inaction and suggests, with evidence, that it’s because 85% of the people with this illness are female. It’s a feminist issue. It’s a women’s rights issue. For too long, the symptoms have been dismissed as hysteria. Unrest covers the history of this sexism, and shows how that history is still very relevant. We are reminded that ::

MS was called hysterical paralysis right up to the day they invented a CAT scan machine.

This past week, in an interview with The Wall Street Journal, Jennifer Brea said that interviewing others, including teenagers and people who have been sick for decades, both inspired her and made her angry about the state of health care. “That really helped me frame it as a social-justice issue,” Brea said. Indeed it is.

9/ Sacred Tears

There are a lot of days where I just feel like I’m doing a good job by just holding it together and not killing myself. Like I’m really proud of that. And it’s not…I don’t want to die, like I really don’t want to die but at a certain point it is hard to call this living. And…..I think the grief of all those things I might not do or see or have………………..Yeah, so it’s sad.

Every single day of survival is a day to be really proud of. And that’s sacred. Many others who are struggling to live with this, and other similar debilitating illnesses, ask these very same questions. And feel that every day is a struggle just to hold it together. I tell myself that suicide is a permanent solution to what may be a temporary problem. That mantra and my meditation practice have kept me alive

10/ More Rage Tears

In another scene, we hear Dr. Nancy Klimas, a clinical immunologist, describe one particular patient. This woman had been “brutalized” by the health care system while she was terribly ill.  She had been put on antidepressants without any depression. She’d been put on antipsychotics when there was no mental illness whatsoever. When she told her patient that indeed there was something wrong with her immune system, Dr. Klimas thought she had delivered the news in an uncaring way, because her patient burst into tears.  But they were tears of joys and relief.  So many of us are treated this way by doctors and even friends and family. We are bullied and blamed and dismissed as depressed or mental.

11/ Awe Tears

When an assistant director is streaming a sunset for Jennifer Brea, we see the awe of that moment through her eyes. Brea even remarks on the beauty. And then we are allowed to see her sadness at not being able to be there in person. She is moved and bursts into tears that she is in bed and not in fact there in person. When you’re deprived of travel, you appreciate the awe of nature and the wonder of foreign places even more, even if it’s virtually through a computer screen. It feels as though everything is magnified and enunciated, and Unrest captures that feeling very effectively. 

12/ I Wish Tears

One of my dearest friends has a male friend who is afflicted like I am. After she watched Unrest, she texted me – “The other thing that struck me was that everyone in the film had caretaker…and I just sobbed for you and Mark.” Because I don’t and neither does her other friend. Neither of us has a spouse or children; we got sick before that happened in our lives. Nor do our families of origin believe us or emotionally support us. I noticed that about the film as well, so I had some “I wish” tears while watching too. 

13/ Hopeful Tears

Leeray Denton and her family allows us in, and her story was the most personally inspiring to me. She, like many of us, had seen many doctors all of whom said there was nothing wrong with her. And so, her husband Randy started to doubt she was sick as he credited the doctors over his own wife. All of her in-laws also, “just immediately jumped on that.” And so Randy left his wife. He believed if he left she would have to get better, that somehow his companionship and care was enabling her in an unhealthy way. Well, she doesn’t get better. And then something happens that makes him realize how very wrong and cruel he was. I was awed by Randy’s courage. He was open and so honest and real about the shame and embarrassment he felt about his past actions. And I felt hopeful that my own family members who have abandoned me will some day yet understand.

14/ Tired Tears

I’m tired of the misunderstanding. But Unrest addresses the key cause of that as well. 

This is half the reason this disease is so hard to understand – why someone like me can be walking one moment and look completely normal and then a few hours later crash in bed for days…and when we crash, we disappear, so you never see us at our worst.

That’s exactly the dilemma.  If we push ourselves to do something or to go somewhere, we pay a huge cost that is rarely seen. And having barreled through a holiday, a trip, a political march, a party or whatever – others assume that we can do those activities at will and with no cost. The scene describing the difficulty with exercise also fascinated me because that is also often misunderstood by those meaning to help.

 15 / Stunned Tears

In another scene, she and her husband cheerfully head off to a reunion at Princeton. This scene was so well done, I was riveted as I saw depicted for the first time the excruciating pain that noise can cause me. She does not narrate this episode. We just see the parade and hear the commotion, and then see her laying on the grass next to her wheelchair just wiped out from the stimulation. And we see the awful pain that is so awful she can’t even speak. When I try to explain to friends that I can’t be out in a crowded loud restaurant, I tell them that it feels like I have no skin and shelter. And that the noise just downloads right into my spine like nails on a chalkboard. I didn’t even know this was a thing! I didn’t know this symptom of mine had a name until I saw a tweet by Hyperacusis Research this past week which noted that hyperacusis is one of the debilitating symptoms depicted in Unrest. I cried through this scene as well, stunned and recognizing that horror.

16/ OMG Tears

Unrest depicts the Millions Missing campaign which took place all over the world – in Germany, in the United States, in Norway, in the Netherlands, in Great Britain. The campaign vividly depicted empty shoes to show the empty lives. We hear a mother’s voice crack as she talks of her sick son. We see men with signs saying #millionsmissing while they hold their so very loved sick female companions. And we see pairs and pairs and pairs of shoes, each with a note. “Missing playing drums in his rock band.” But this is the one that got me in the stomach ::


I corresponded with another former dancer, @evquaymac, on Twitter, and we both confided to each other that we both still owned all our old pointe shoes. You can follow the continuing campaign on Instagram here.

17/ Gratitude Tears

On Twitter, @LadyMicah wrote, “I think the more of us living with #chronicillness should do documentaries/films of our experiences/stories to share to increase more efforts of awareness, actual acknowledgement that this is real & advocacy for more support.”

I tried. I only managed a ten minute short film. Creating that took Herculean effort.

I can’t imagine the strength and drive of Jennifer Brea to create such a masterpiece.

I am so grateful to her that even as I write this I am crying. And I am deeply grateful to everyone who helped her and supported her to get this documentary filmed, edited, produced and out into the world.

I had heard about Jennifer and her work in the summer of 2016, when Sarah Cannon who had been helping me edit my own 10 minute short, told me about being assigned to working with Jennifer at the Sundance Institute.

I was so hopeful and excited then to hear about this work. And the final film was more than I ever could have hoped and imagined.

Here is my own short story film  –

 


Related Stories

Reflection Points ::
What's your reaction to Unrest?
Do you live with an invisible illness? How did you feel watching this film?
Do you feel more visible?
If you are not living with a chronic illness, how did you react to this film?
Were you surprised? What surprised you the most?
Share in the comments
Extra Elements of Interest ::
TAKE ACTION
Unrest Film site
Jennifer Brea On How She Directed ‘Unrest’ From Bed
Deadline
Time For Unrest
The Independent
Director Jennifer Brea Exposes the Personal Pain
Los Angeles Times
A Reboot for Chronic Fatigue Syndrome Research
Nature International Journal of Science
"Unrest": Documentary Filmmaker Jennifer Brea
South Dakota Public Radio
Unrest
BBC Radio Four
Unrest is Endorsed by Dana Stevens
The Slate Cultural Gabfest

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The only way anything is ever going to change is if people can see us.

- Jennifer Brea
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