Who is Jennifer Brea, and What is “Unrest” About?
Jennifer Brea was a Ph.D. student at Harvard, when she was struck down by a mysterious illness. This is a documentary of both her and her husband’s journey, living with this nightmare of a disease called ME/CFS (Myalgic Encephalomyelitis or Chronic Fatigue Syndrome).
She approached me last November, and asked if I could review her film, “Unrest”, in exchange for a preview. (I apologise for getting around to it so late.) “Unrest” has now won quite a number of awards, and is currently available on Netflix, iTunes, Vimeo, and Google Play. It is my hope that it reaches the shores of Singapore soon, too!
What is the Meaning of Pain?
“This illness destroyed my life. But what it showed me, I could never give that back.” – Jennifer Brea, “Unrest”
There were many meaningful sentences made in the documentary, but that quote stood out to me the most. Pain has indeed destroyed my body – I can feel the altered parts, and the physical weaknesses are ever present. Yet it has also opened my eyes to a whole new level of living. What it means to be human – so fragile, yet so strong. Broken, but enough. Full of flaws, yet that’s also where our beauty emerges from.
Get the Tissues Ready
I will be honest, I’m one of those women who cry during sad movies. It’s not uncommon for my partner to look at me with amusement and say, “but it’s not even sad!” True. Sometimes it’s not even a tragic moment, but the music! Those epic minor key tunes are powerful! I decided to watch it together with my partner and his father over Christmas, as I wanted to get more opinions about this film (and sneak some awareness in ;)).
Best Documentary in Ages
It was hands down one of the best documentaries I’ve watched in ages, and I was bawling throughout the film. (Okay, more like sniffling in silence, because my partner’s dad was nearby. I didn’t want to alarm him.)
While I don’t have ME/CFS, I do live with plenty of other chronic illnesses to make up for it. Even though the pains that we experience are different, the ultimate impact is the same. It affects our careers, and relationships with everyone around us. It scrambles your identity, and changes you both inside and out. It reduces you into a rubble of a human being, dependent for aid, and sometimes struggling for survival, even.
As such, I could relate to every single thing Jennifer said and did in this movie. While I’m not chained to my bed like she was, I’ve had periods in my life that were similar. For a few years, my joint aches had been so bad that it took me two hours every morning, just to shift my legs over the bed. Everything in the film was so real.
Viewpoints from My Healthier Movie Companions
As I mentioned earlier, my partner and his dad watched this film with me. But guess what? Their viewpoints were quite different from mine, which isn’t surprising. No matter how hard you try, it’s impossible to understand someone else’s pain if you’ve never suffered it before.
I will share some of their thoughts here, because I feel that it’s important to listen to what healthy people think about such affairs as well. We shouldn’t let outrage consume us, or they will never dare to speak truth. We need to work together, in order to improve our circumstances within society.
Three Words that Summed it Up for Them
Three words that summed up what my partner’s dad thought about it: interesting, enlightening, and boring. Yes, boring. I’m not going to argue with him, because I too, agree that chronic illness is boring. It doesn’t have a beginning, middle or end, and as human beings, we’re drawn by nature to that structure, with life as the biggest story of all time.
Neither could he comprehend the intermittent nature of the illness, where it was possible to walk around one day, and then become bed bound the next. That doesn’t make any sense in terms of how a ‘normal illness’ works – you fall sick, you rest, you recover, and continue on your linear path. Chronic illness is more of a dysfunctional sinus wave, a disruption to the pulse of life. If you’ve never had an arrhythmia, you wouldn’t know what it feels like either.
To provide a bit of background, he is one of the kindest, most generous and patient person I know. I’ve seen with my own eyes how he cared for his wife when she was stricken with cancer, and he’s never judged or belittled me for always being sick. If someone of this nature can find chronic illness boring, what about the rest of society?
What’s the Point to Raising Awareness?
“Why doesn’t she do something about it?” That was something that puzzled him, even though I tried to explain that she was doing something about it by making this film, despite the difficulties.
He asked, “what’s the point of raising awareness? Is it to ask for funding?” He believes that the ultimate point is to facilitate the discovery of a cure. This is a very normal way of thinking. Speaking for myself, solving problems and finding solutions were my biggest coping mechanism for decades, until they weren’t. There comes a point in many a chronic illness person’s life where such coping tactics no longer work, and you’re left with the sole task of just trying to stay alive, and get through each day.
Yet this statement does make sense too. Whilst the first step towards any change is to acknowledge that a problem exists, the ultimate aim should be action. Showing empathy to a sick person is often an excellent way to provide support. But to contribute to research and press for solutions on a bigger scale, is also to show solidarity. It is empathy in action.
How Celebrity Endorsements Help
He mentioned that he tended to pay more attention when it was a famous person who was speaking. The only difference I would say, is that you can relate to that person to a certain degree. You know a little about their life, their personality, and perhaps even admire their talents. You feel a connection. This is nothing new, as charities often use a single child or person to ask for funds, instead of showing a generic populace.
He also said that, especially for actors that have been in the business for awhile, you can see the marked differences of ‘before’ and ‘after’. There is a frame of reference, as we follow their timeline in showbiz. This is why many in the spoonie community are ‘happy’ when a celebrity chooses to be open about their chronic illness, such as Selena Gomez with Lupus. It’s a power up in terms of awareness raised, as opposed to the trickle plebeians like me generate 😉
For example, Lady Gaga recently cancelled 10 tours due to extreme fibromyalgia pain. I remember a friend telling me years ago, how much energy there was in her concert, and all the dancing they did. I shuddered thinking about it, as that sounded like a great recipe for a pain flare. Now, knowing that Lady Gaga lives with fibromyalgia, I too wonder how she did it all. Having that grand frame of reference makes you ponder about it more, and being in the news always helps 😉
The Problem with Charity Overload
This is another interesting point about where and whom we should donate to. There are so many charities and people in need of aid, and the media bombards us with ads every day. What do we do? Should we donate to that sick child, or to you? We can’t help everyone in the world.
I really have no answer for that, except to just go with your heart. The only thing I can hope and strive for, is to show just how much chronic illnesses also affect us as human beings. The impact on society may be silent, but it’s huge. None of us are ‘more’ or ‘less’ human, we’re all just trying to live with a decent quality of life.
Technical Terms Whizz by You
While I understood the medical terms used in the film, they confused him at times. Words like ‘mitochondrial’ whizzed by him, and I’m not sure if it’s part of what made the movie boring. When you don’t understand something, it’s easy to zone out, or quickly become lost. While I think that these terms were necessary for explaining certain factors, it was also a good reminder to be more attentive with my own blog posts. Not every term that’s become everyday words to us is common language out there.
Conclusion: Definitely Worth Watching
If you had to pick only one film to watch about chronic illness, I would give my vote to ‘Unrest’. While the viewpoints of my partner’s dad were quite different from my own, I’d like to say that we didn’t argue over them, and I took no offence.
In fact, I found his perspectives fascinating and enlightening. It’s important that we are open to what others think about our illnesses too, if we want change to happen. After all, we also need them as our advocates. They are the people with the energy and means to make a difference in our lives, and for the good of all society, too. As always, clear communication is the lifeblood for cooperation, in a bid to improve circumstances, whatever they may be.
Watch the Official Trailer Here:
- For More Insight:
- A Filmmaker’s Personal Look at Chronic Fatigue Syndrome (article on wsj.com): https://goo.gl/r7V4dr
- This New Documentary on Chronic Fatigue Syndrome is a Must-See—and Not for the Reason You Think (article on vogue.com): https://goo.gl/PYoxbZ
- Chronic disease: an economic perspective (article on who.int): https://goo.gl/XzvyRg
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