i saw the documentary unrest last week, and i want to thank jennifer brea for making this film. it has changed my life. i changed during the process of watching the film, and have continued to change subsequently.
since seeing it, i have been reflecting on the immense courage and strength of character required by anyone who has to take a stand against the world on behalf of any publicly mistrusted experience which they know to be true. even when the world yells back at them that they are mistaken. i don’t mean something they think or believe, but something they absolutely know to be true. something like knowing you are gay in a homophobic culture, or knowing you are meant to be a man when you were born in the body of a woman.
or something like having a devastating physical illness which, because the medical profession hasn’t yet understood its mechanisms, many people continue to claim is psychiatric in origin. i have nothing against psychiatric illnesses. i have been mentally ill in the past. i don’t consider mental illness to be any more or less serious or impactful than physiological conditions. when i am mentally ill, and know that that is my problem, i am honest and open about it.
but when i’ve experienced a catastrophic physical illness for more than half of my life, i am also prepared to call that by its name. at least, i am now. until last week i had chosen not to declare my disorders in this blog. while watching the film last tuesday, i realised i was ready to come out. for the first time since i was twenty six years old, i don’t feel ashamed, embarrassed, or that i need to justify myself. i don’t feel obliged to apologise for my crazy symptoms. i have ME, and i have been severely ill for all these years.
stupid people have made stupid jokes about my being in a wheelchair, but being able to get out of it to walk a short distance. people who i’d thought were understanding, and to whom i’d explained my symptoms in detail, have asked ignorant and preposterous questions. such as if i didn’t think my illness was psychological, might it be at least sixty percent psychological?! i have been judged over and over, and have repeatedly borne the brunt of what i now realise is disability abuse. i have faced so much disbelief and disrespect over so many years, that frequently i’ve lost the ability to trust myself.
jennifer brea has made a beautiful documentary. it is partly an intimate portrayal of one couple’s suffering, and partly a depiction of collective endurance. it is also, just as importantly, a call to arms. (it wasn’t until after i saw the film that my spanish friend alerted me to the fact that its title has a campaining, as much as an illness related, meaning.)
when a dramatic thing happens to us as an individual, often we aren’t able to perceive its universal relevance. i don’t know how she managed it, but jennifer brea has somehow magically succeeded in sensitively reporting her own drama, while simultaneously describing one which is global in scope and significance.
the documentary explains how people with MS, a condition which has many similarities to ME, were not believed until cat scans were invented. once scientists were able to visually witness the physical evidence of their disease, the public stopped judging them as suffering from a psychosomatic sickness.
there are many shocking tales in the film. there is whitney, an american photographer who used to travel the world, took stunning photographs, and was a source of joy and zest for life to all who met him. whitney now lies in a dark room in his parents’ home. he wears ear defenders, finds even the most basic human interaction agonisingly painful, is emaciated and depends on a drip for nutrition. he can’t eat or speak or listen to music. whitney’s parents are well known academics. his father, a famous biochemist, has set up a research team at stanford of some of the most admired international scientists, two of them nobel prize winners. he is desperately trying to find out what is going on in ME patients, desperately applying for funding. so far his applications have been rejected twice. he fears his son could die from organ failure before he reaches his goal. (i was astonished to discover that there is a three percent mortality rate in ME patients).
another shocking report concerns a family in denmark whose daughter is also a severely ill ME person. one day four policemen turned up at their home and took their daughter, karina, to a psychiatric institution. the institution’s reasoning, they claim, is that karina suffers some kind of fantasy illness which her parents are exacerbating by buying into – by believing her. after three years karina was allowed home, still as unwell as she was on the day when they took her away.
there are also stories of hope. ron davis, the chap at stanford, and nancy klimas, an immunologist based in miami, are doing amazing research and uncovering new information about this disease. they are also speaking to the world on behalf of patients, working to dispel all the myths, judgements and misunderstandings. and we hear about an international protest which took place in 2016 called missing millions. many attended demonstrations at twenty five cities around the world, while the symbolic presence of each of the ME people too sick to attend in person was represented by an empty pair of shoes.
before i saw this documentary i thought i knew quite a lot about my illness. i was wrong. before i saw it i didn’t know what to expect. i suspected i might find it moving. i did find it hugely moving, but also informative beyond my imaginings. when it comes out on dvd i intend to buy two copies – i will need to rewatch it multiple times to take in all the new information – and i want to lend the other copy to as many friends and family as i can persuade to see it. as i said to the cinema worker when we left, i want everyone to watch this film. it has the potential to transform the world’s recognition and understanding of this terrible disease.
thank you jennifer brea.