Stonebird : REVIEW OF THE OSCAR-NOMINATED FILM UNREST
Greg Crowhurst January 23rd 2018
Whatever you feel about this film, the fact is Unrest has managed to access the mainstream in ways that other previously important documentary films have not managed to achieve and has been short listed for an Oscar.
Being available on Netflix makes it much more accessible for the house and bed-bound. Cinema, of course, is impossible here.
I approached the film with great interest. One of the difficulties of living and caring full time for someone profoundly hypersensitive and very severely disabled, is the massive isolation, of necessity that you experience. To have an opportunity, then, to see how others experience living in this bizarre world, was extremely valuable; though If you want a specific, pure ME film, you will be disappointed and irritated by the mixing up of the names, ME and CFS.
What we see in Unrest is a group of very ill people and in particular Jen Brea and her husband, struggling to come to terms with the devastating and unexpected impact of an illness, that has rendered her disappeared from the world, to all intents and purposes.
Having lived as sole carer, with my wife for decades: seeing her utter physical untreatable agony, rendered bed bound by wrong medication and paralysed repeatedly day and night, seeing her tortured by even the quietest sound, seeing her hurt indescribably by the simplest physical touch, seeing her harmed by perfume and chemicals, seeing her unable to have multiple or even single visitor in the room, seeing how she is often unable to tolerate my presence or help, I have to say that it was wincing to watch some of the clips. Clare Norton makes the point very well in her review on Stonebird.
The film is not always that ME-aware at times, for viewers who might be watching it. Bright colours, the noise, the hand clapping, the clapper-board sound, the sudden movements, the tummy drumming, the children playing loudly, can literally cause physical pain to people with photophobia, visual disturbance, movement and motion sensitivity, sound sensitivity and visual difficulties. The length of the film is also long for someone to easily watch, with energy poverty.
If you have ME, the post- exertional impact of the physical and mental effort and the emotional affect are also important to consider, in advance, when thinking of viewing the film.
US MEN DON'T CRY
The impact of a complicated and invisible, much derided and misunderstood, misinterpreted illness, on the relationship between Jen and her husband Omar, made me swallow hard. Us men don’t cry easily.
Linda and I know very well, the strain of trying to comprehend and figure out, through trial and error, ways to cope with the physical experience of an illness, invisible and almost impossible to imagine or even describe. In one unforgettable scene we see Jen and Omar trying to deal with the potential affect of mould. The frustration of having to keep washing and changing clothes every time Omar went in the house was very real and very brave of them to show.
I have to wash and change clothes myself repeatedly if exposed to perfume, chemicals, smoke from outside, as they have a such profound and lasting affect upon my wife, yet that was hard to comprehend initially; the alienation it can cause in relationship if not understood, is very real.
We completely relate to Jen’s worries about the affect of her illness on Omar’s life and Omar’s loving response. So many times Linda has told me to leave if I must, in order to have a fuller life, not knowing that she is all I could ever want? Not appreciating how every moment we spend together is precious beyond understanding. For us too, the loss of children, touched on in the movie, is a huge unfathomable sadness, no doubt felt deeply by many trapped, as we all are, in nowhere land.
Omar makes a very astute comment, which I share; the life we live is “our normal”. Seen from the inside, we make it work, we connect in the moments that we can, we focus on love and small things, however seen from the outside, if people even think about it at all, our life is an incomprehensible and a very limited, tiny existence. For Omar, the sense of being pitied was deeply upsetting. For the husband, like me, going between two worlds, it is perhaps a more obvious issue than for the person stuck in the total isolation of illness, who simply vanishes from view. This comes over very well indeed.
A SYSTEM THAT WILL NOT SEE OR HEAR THE TRUTH
I was absolutely gripped by the impressive critique of “hysteria”, the film is worth seeing just for that; I am so grateful it is there. Surely no one could seriously believe that ME is a form of hysteria, especially after watching Unrest?
Having dedicated a book to the release of Karina Hansen, literally ripped by psychiatry away from her home and her life, I was riveted and moved beyond words, by beautiful Per and Ketty Hansen’s testimony showing the deep grief and complexity of being trapped in a system that will not see or hear the truth. It was a joy tempered with the greatest sadness, to actually see Karina walk free, with the use of a frame. That day was hard won, never thought possible.
How much untold suffering has she born?
The list of those who have died with ME is a poignant, sacred moment, but more time is needed, especially for people with ME themselves, to read carefully and slowly, the names. Sadly too many of them personally known, too many more already added to the list since the film was produced.
Unrest is a hugely important film. Its success speaks for itself- let us hope that it will make a genuine difference to people’s lives.
But- and this is a BIG but, let us hope it will not leave those who watch it with an unrealistic expectation of treatment that they cannot afford and is simply not available, hope of recovery that is not likely presently or go away with the misunderstanding that people with ME, generally get better, go on to have brighter lives or in time will be able to do far more than most can ever possibly hope to do.
We have never known anyone get well or even significantly better or recover at all, in all our decades long experience.
Going back twenty five years, Jennifer Brea’s film reminds me of the early days of illness here, of the struggle to comprehend the incomprehensible, the lack of information and the gross misrepresentation and misinterpretation that can occur, particularly with the newly ill.
Jen has been lucky to find treatment that has helped her. Unfortunately for us and many others, the symptoms have only worsened from Severe to Very Severe ME over time and we have still not found the answers we need. we have not found effective treatment.
We have not found aware enough practitioners to help, not harm, we have been thrown into a total separation and isolation from the world, Linda is left literally tortured, by symptoms.
There is much more to be seen and understood about ME, especially Severe and Very Severe ME. Voices from the Shadows conveys that aspect well. Both films are crucial in raising awareness.
To sum up, although I was deeply moved by certain parts of this film, it would be a shame if the general public goes away with an overly positive view from the ending, which though heartwarming and uplifting , is not generally the feeling associated with long term, incurable ME.