Tracking my efforts to beat Myalgic Encephalomyelitis (ME), aka CFIDS, aka CFS

Tracking my efforts to beat Myalgic Encephalomyelitis (ME), aka CFIDS, aka CFS

Monday, January 22, 2018

Watched "Unrest" the Movie


I was beginning to feel guilty that I hadn't seen the movie Unrest yet, even though it's been available to stream for several weeks.  It almost feels as if it is the duty of every ME patient to see it and so my wife and I watched it last night on Amazon Prime for $0.99.  (Also available on PBS.com for free.)

First, as in most posts on my blog, I assume you're either an ME patient or an advocate, and you're generally familiar with this movie even if you haven't seen it yet.  Let's skip the usual introduction/summary.  Suffice it to say, Unrest is a documentary film written, directed, and starred in by ME patient Jennifer Brea about ME.

The filmmakers speak to two completely different audiences simultaneously: ME patients and those who have no real knowledge of ME.  Unrest seems aimed more directly to the latter (non-patients), with satisfying undertones that only patients will recognize.  The film neatly accomplishes this dual-level communication without losing direction.  The reviews from non-patients, mostly professional reviewers, have been  universally positive. It has a 100% Rotten Tomato critics score.

As a patient, this was a different viewing experience from almost any other film.  Normally, I sit down to a movie and my attitude is just: "Entertain me, Movie!"  With Unrest, I felt almost nervous.  The focus is on severe patients, as it should be. (I am not in the severe category.)  But, this film and the severely ill patients depicted in it will carry the flag for all ME patients.  Unrest will speak for all of us even if that wasn't the intention.  I worried that it could present the disease differently than I would have hoped--every patient has a slightly different perspective on how ME should be be presented to outsiders.  So how did it do?   

The challenge in trying to present ME to the uninitiated is, "how far down the rabbit hole do you go?  How far is the audience willing to follow before they say, this is crazy, and tune out."  Brea and her team chose to go pretty far down some rabbit holes (the camper in the desert, the mere mention of fecal transplants, for example), perhaps realizing that this was necessary to capture and maintain a general audience's interest.  They needed a hook. At the same time, they always manage to pull the perspective back and make the point that, one, they are aware this seems crazy, and two, they were only driven to these extremes as last resorts, by the unbearable frustration of having so few resources for care, treatment, and research available.  Every time the filmmakers started down a path that made me begin to question their choice (Is this rhetorically counterproductive?), they ultimately justified their choice through the strength of the overall narrative.

It is astonishing that Brea and her team were able to pull off a movie like this.  As long as I've been a part of the ME community, there have always been various attempts to raise broader awareness for ME, many of them moderately successful but seeming only to reach others in our community.  Over time, it's tempting to think that this is a cursed disease and nothing will ever change.  I would not have thought it was possible to create a movie of this quality about ME and to achieve the broad distribution, awards, and promotional backing of Unrest. That's the real accomplishment.  A large number of people outside of the ME community are actually seeing this movie.

Unrest will pay dividends for ME patients for many years to come. The next time there's, say, an NIH hearing about the future of ME research, this movie and its successes can be referred to as evidence of a growing public demand.  Nobody's going to want to be the next Per Fink (hopefully), standing in the way of medical progress.  On an individual basis, if a patient's family member or doctor doubts them, they can refer the person to this movie.  (Even if the referred person never watches the movie, its mere existence lends credibility.)

This movie should be mandatory viewing for every ME patient and their family members and caretakers (if they're willing).  It is an emotional experience and it will be difficult for many patients to be reminded of how much they've lost.  But it is unquestionably worth it (if you can handle it).  I can't say enough how impressive it is that Jennifer Brea and her team were able to pull this off.  Brava.


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