Review of Unrest (2017) by Signe3 — 09 Oct 2017

[partial review].

It's Canadian Thanksgiving today, an interesting day for me to be writing this review. My caregiver said her family calls it "You're Welcome" day instead because they’re native, and we all know the story there. I thought that was quite generous, and there is a parallel to that phrase provoked in my feelings by the film which will hopefully articulate itself if I keep writing.

I am thankful that so many people around the globe pulled together to make this film happen because I think it's a very important start in telling the ME story. I'm thankful that Jen told her story openly, intimately, and viscerally with her own unique and exalting qualities of optimism and persistence in fighting for a life worth living.

The film needed a personal vantage point to engage audiences and that's exactly how Jen created it, by starting with what she knew -- herself. She tells her own story through showing and telling it directly, but also through the use of some of her own archetypes represented in the patient stories. There were parts of the film that I found very difficult to watch as a person with ME (pwME) -- namely the Princeton parade scene and Jess sitting up in bed and then relapsing, as I had gone through exactly the same. Since I'm also a pwME the film raised myriad and often confounding feelings. I was envious of Jen for being able to crawl up the stairs time and again. The last time I crawled up the stairs was 15 years ago; I have not been able to go up or down since. I was envious of her level of functioning and ability to recover relatively quickly. I was grateful for her tears, candidness and authenticity. My heart was warmed by Omar’s love, wisdom and ability to articulate. I was irritated with Dr. Peterson for calling it “chronic fatigue” and not even “chronic fatigue syndrome”. I appreciated the artistic merit shown especially in the the way passage of time was displayed. My heart broke for Karina’s family. I’m left to assume she’s doing better than when she was laying in her darkened room since we see her sitting on her bed, fully dressed and engaged in an activity. I was struck acutely by how Jen and all the featured patients had family and/or friends around supporting them. Yes, Leeray's husband left for a time, but she always had her girls to keep her going. They also all had homes and none were in financial crises, nor did they have to resort to outside agencies for care, which is yet another nightmare of a situation and deserves a film on its own.

As far as Maslow's Hierarchy of Needs is concerned, ME patients generally don't fare too well here where the basic physiological needs for food, water, warmth and rest are the foundation. Jen herself definitely had the ability to have these covered, along with the second stage of safety and security. Not only that, but Jen was able to fulfill all 5 stages of the pyramid including love and belonging needs, esteem needs and even self-actualization through making UNREST. This is highly atypical of the social situations and functional abilities of most people with ME and I want the general public to recognize that.

Jen has been criticized for this as being privileged, but this "privilege" is what allowed her to make such a great and important film. But, it is just her story. While this is a fantastic start, I must speak up for all the pwME who are struggling to get food, water, warmth, housing and rest needs met. There are thousands of us without homes (or Airstreams) who are living in tents in the desert, nursing homes, hospitals, cargo trailers and cars who are often freezing, isolated and desperate. There are thousands of us who can't swallow food, keep it down or even get parenteral nutrition as Whitney does (which is far from ideal in itself, but it keeps his needs met as best as they can be at the moment). There are thousands of us who are alone, without family or friends. There are thousands of us not getting our basic emotional needs met or who are being abused. There are thousands of us who rely on caregivers that don't show up to help us eat or pee or change our stinky pee sheets from the time the previous caregiver also failed to show up. There are thousands of us who don't know where next month's rent will come from, or even where the money for food will come from, let alone the money for heating, cooling, care, or assistive devices. There are thousands who do not have access to basic necessary medications like thyroid pills (and I'm not even talking about the likes of Valcyte, Rituxin or Ampligen here). I do not expect Jen to cover all these things as they’re not part of her narrative, but I feel obliged to because it has been the narrative of most of us at some point.

So yes, as I am here alone and not eating on a holiday known for togetherness and feasting, I am profoundly aware that we are millions missing. But, even more so, at this moment I'm feeling we are also thousands missing from this film.