(THIS ARTICLE IS MACHINE TRANSLATED by Google from Norwegian)
“I know you've said to yourself that if you really couldn't get up, why would you film it? Well, I kind of think someone should see this. ”We hear Jennifer Brea's voice speak these words slowly and with great effort, observing from an uncomfortably close position how she is in vain struggling to rise from the floor.
In this intimate and biographical documentary, the independent filmmaker tells of an enigmatic illness that has bound her to bed. When she was twenty-eight years old and working on her doctorate at Harvard, she met the love of her life, but only a few months before the wedding she got a fever that made her fall asleep. The doctors told her "it's just imagination", but the condition only got worse. That's when she picked up her camera. The story she tells is a personal account of her unique life experience. "I don't want to die at all, but at some point it's hard to call it living."
More than 85 percent of all ME patients are women.
ME – A compound disease. Unrest is also much more than a personal story. The film uses both home videos and photographs, as well as archival footage from public video and television. Still, the story is told mainly through Jennifer's eyes, using her personal camera and video chat on Skype that enabled her to contact others with the same illness from around the world.[ihc-hide-content ihc_mb_type = ”show” ihc_mb_who = ”1,2,4,7,9,10,11,12,13 ″ ihc_mb_template =” 1 ″]
Myalgic encephalomyelitis (ME) – commonly known as chronic fatigue syndrome – is a debilitating disease affecting neurological functions, the immune system, the endocrine system and metabolism. It often comes after an infection, and the vast majority of those affected lose their ability to work, are tied to the home, or even to bed.
"Jappe-flu." There are over a million people with ME in the US, and between 15 and 30 millions globally – yet their condition is often not considered a disease. We see a young girl, Jessica, with legs like a hundred years old, and who can't even put her legs on the floor when she tries to explain to Jennifer via Skype how she avoids going crazy. At the same time, we hear CNN's Larry King call the chronic fatigue syndrome for "the flu". In this way, the ME disorder has many sides, and the great strength of the film is its ability to present this complexity. At the beginning of the film, we meet Omar Wasow, an IT expert, while he and his wife rush to Princeton Hospital. After arriving, Omar talks about his concerns about talking about the disease. "You have to be careful. If you say too little, they can't help you, and if you say too much, they think you're mentally ill. ”This scene clearly explains the approach of the film, which is unique and innovative in more than one way.
"I don't want to die at all, but at some point it's hard to call it living."
A push for increased visibility. More than 85 percent of all ME patients are women. Filmed from Jennifer's private bed-sphere, the film represents in an excellent way the helplessness of those with the disease. It also corresponds to the position women and patients traditionally hold: they are referred to the private space, made invisible to the public, and are passive (in this case, even motionless) objects for the active – male and / or medical – gaze. But at the same time, the film faces these roles: Jennifer Brea is the one who makes the film, and she is active and visible. But visibility is also the main purpose of what she does. From her initial ambition that "somebody should see this", to her final claim that "the only way something can change is for people to see us". She has managed to mobilize the duality of what has to do with eyesight – the eye and the gaze – and made it work in her favor. Helpless and motionless as she is, she has uncovered the public aspect of their private and passive state, and has shown that private suffering is subject to power relations in various spheres such as family, science and politics.
Those who see have the power to define what they see, while the powerless are the ones who are being looked at.
Reveals old power relations. Power relations are also expressed when it comes to what is perceived by the gaze. Those who see – be it men or doctors – have the power to define what they see, while the powerless are the ones being looked at. Thus, this film is not just about a specific illness, but about the general struggle that must be waged by women and others who are traditionally the passive objects of the viewer, to take over the active viewer role and not just be considered themselves. This is the only thing that can change the "eye that sees," and – as Jennifer Brea so quietly shows – realizing what matters most to those affected: raising public awareness.[/ ihc-hide-content]