Illuminating Narratives

Most people will have heard of ME, but whether they realise the true extent of its debilitating power – a power that can leave people without the ability to speak, unable to place their feet on the floor or in excruciating pain – is an entirely different matter. Jennifer Brea’s Unrest puts an end to this ignorance by shining a light into the lives of the millions of sufferers that have disappeared into dark rooms.

Brea’s project began on an iPhone when she first fell seriously ill after a high fever and series of viral infections left her bed-bound. The film begins here, in the dead of night, with Brea on the floor staring into the camera as she tries to lift herself back into bed. The following 97 minutes explores her life from this point, as she battles for a proper diagnosis, maintains her marriage, campaigns for medical progress, searches for a cure and goes about her everyday life. Until the credits roll it is not explicitly referred to, but of course, she is also producing and directing the film we see unfolding before our eyes.

Unrest is unflinching in its portrayal of ME. There are times when husband Omar clearly wants to put the camera down in favour of assisting his wife but she encourages him to keep rolling. Brea even says at one point: “If I really couldn’t stand, why would I be filming? But I think someone should see this.” This desire for someone to “see” is the undercurrent of the whole documentary; whether that is Jessica fitting in bed after resting her feet on the floor for a few moments or Brea screaming out in agony after she collapses outside her house.

The fact people do not “see” also seems to have had an impact on medicine as very little progress has been made in the past 30 years. It is also very poorly funded in the US. One particularly frustrating bit of footage reveals Ron Davis, a Stanford Professor of Genetics and a co-investigator on the Human Genome Project, in a room of world-class scientists poised and ready to research but unable to proceed because of the lack of funding. Davis’s son Whitney has a severe case of ME and his heart-breaking concern is that his son will die before he is able to discover a cure.

Another block to progress is the institutional misogyny that has prevented female patients from being perceived as reliable narrators of their own illnesses. 85% of ME sufferers are women and for a long time their symptoms were viewed as entirely psychological and branded as hysteria. Later, hysteria was renamed “conversion disorder” which is exactly what Brea was wrongly diagnosed with. In Denmark ME is still considered a psychological illness and Unrest uncovers a case where a young woman is shockingly ripped from her parents’ home by law enforcement and sectioned for several years.

At the start of the documentary, Brea says “We are constantly telling ourselves a story of who we are and where we are going.” Unrest is Brea’s retelling of her own story, and the story of the ME sufferers who have been ignored, institutionalised and misunderstood for centuries. She tells a tale of pain and also resilience, triumph and joy as she works with her husband and community of ME patients to create an international movement that highlights their plight and fundamentally instigates the medical progress necessary to find a cure.

Certain screenings will be accompanied by Unrest VR, an interactive non-fiction experience providing an immersive journey into Brea’s experience that contrasts the painful solitary confinement of a bedroom world with the kinetic freedom of an inner dreamscape.

Hannah Clugston

Unrest, released 20 October, Picturehouse Central plus 10 venues nationwide including a Q&A tour with the director Jennifer Brea.

1. Still from Jennifer Brea’s Unrest.