Tuesday, January 22, 2013

A Howl of Desperation for those who Cannot Howl


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A howl of desperation for those who cannot howl
Uploaded by Roger Ebert on February 10, 2012 3:38 PM

Scott Jordan Harris in the UK

There is a shot in "Voices from the Shadows" that shows a man in his
twenties lying forlornly in bed. Like the rest of the documentary, it
exists to illustrate the miserable effects of the illness Myalgic
Encephalomyelitis, or ME, which is often unhelpfully called Chronic
Fatigue Syndrome.

There is a detail in the shot that haunts me. The man has a beard, of
a length and thickness unusual, and unsuitable, for someone his age.
He has the beard because he is unable to stand up long enough to shave
and because having his parents, or a nurse, sit and shave him as he
lays in bed is messy, uncomfortable and undignified. Every morning he
thinks about shaving but his reserves of energy are so limited that he
has to choose between being able to go to the bathroom because he
wants to shave or, later in the day, being able to go to the bathroom
because he needs to go to the bathroom.

He could shave instead of telling his carers what he feels able to eat
that day, or instead of eating it, but that's not a sensible idea. He
could shave instead of speaking to the friend who will visit him for
ten minutes in the afternoon, but he hasn't spoken to anybody besides
his parents and his doctors in two months, and he really wants to talk
to that friend. He could shave instead of counting out and swallowing
the painkillers he needs to roll over in bed without wincing but ...
well, that's just crazy talk. Besides, you need light to shave, and
electric light gives him migraines and blurs his vision. Every day,
this pattern recurs. Although shaving is always on the list of things
he wants to do, it never makes it to the top. And so the beard grows.

None of this is discussed in "Voices from the Shadows" - the man is
unnamed and his beard is unmentioned - but I know about it because I
have the same beard. I have the same beard because I have the same
illness and, apart from three years of remission in my teens, I have
had it since I was 11. I'll be 30 this year. I always hope to get
better. I never expect to.

As a child, I was an inexhaustible over-achiever and what, in America,
is called a straight A student. At 10, I was an assistant karate
instructor and on course to be one of the youngest black belts in
Britain. At 11, I had a routine inoculation - a common catalyst for ME
- alongside the rest of my school classmates. I was never
inexhaustible again. Eighteen hours later, I couldn't lift my arms. My
skin erupted in a rash. Daylight burned my eyes. My migraine made me
cry. My dad thought I had measles. I wish he had been right.

I couldn't go back to school for a year. My childhood stopped, and I
measured time by counting down the intervals between doses of
painkillers. A couple of doctors, and several teachers, didn't believe
I was ill. I learned a new term, one whispered to my mother and father
when doctors thought I couldn't hear, or couldn't understand:
'school-phobic'. If it hadn't been for my combative parents, my
saintly GP and my fast mouth, I would have been referred to a
psychiatrist, or reported to a truant officer.

Eventually, I recovered. I went to high school, and tried to reclaim
the time I'd lost. I was captain of the debating team, the rugby team
and the athletics team. I was on the basketball team and the swimming
team and the cricket team. I wrote the school play. I was champion
athlete on sports day two years running. I played rugby for the town
and the county and the local club, sometimes four times a week and
twice a day.

And then I started to feel ill again. A few months later I was back in
bed, trying not to throw up the little food I could keep down,
exhausted by the effort of cleaning my teeth, and as completely
reliant upon my parents as I would have been if I'd become
quadriplegic. I stayed that way for years. Once, when I was sick of
being 16 years old and unable to take a damn shower by myself, I tried
to take one while my parents were out. My legs buckled and I had to
lie on the bathroom floor. I was there for two hours. I was never well
enough to finish high school. Again, there were doctors who thought I
wasn't really ill. There still are.

I'm in a better situation than most of the ME-sufferers in "Voices
from the Shadows." For one thing, my symptoms are not as severe as
they used to be and I am able to work a little from my bed. (I'm a
film critic. Or at least as much of a film critic as one can be
without ever really getting to the cinema.) For another thing, I'm
still alive.

"Voices from the Shadows" does not just document the effects of ME: it
documents the abuse of those who have it by doctors who fail to
recognize it is a physical condition and treat it instead as a mental
illness. The World Health Organization has defined ME as what it is -
a neurological disorder - since 1969. Especially in Britain, but
elsewhere too, sufferers born more than twenty years later are still
being treated as malingerers.

Of the patients profiled in "Voices from the Shadows," two stand out.
One is Sophia Mirza and the other is Lynn Gilderdale, whose face -
pretty and pale, and somehow serene despite struggling not to grimace
with pain - is one of the film's unshakable images. I knew Lynn
Gilderdale. I didn't know her well, but then it wasn't easy to know
her well. She could barely move, and the idea of her leaving the house
was laughable. She had 48 Facebook friends and I was one of them. We
exchanged occasional emails. I took longer to reply to hers than I
should have. I didn't realize the opportunity to know her would be so

Lynn's agony was incessant: her ME tortured her with an intensity that
shocked me. Before I knew her, Lynn's body had been damaged by doctors
who thought she was at worst lazy and at best mentally ill. She never
recovered, and her life worsened day on day. In early December 2008, a
friend told me that Lynn was dead, and that her mother had been
arrested for murder. Lynn's illness had become insurmountable and, one
night, she attempted to overdose on morphine but didn't have the
strength or co-ordination to do it. Walking in on her, Lynn's mother -
in a supreme act of maternal love - assisted with the overdose. An
autopsy revealed that Lynn's spine was severely diseased. Her illness
had been purely physical.

The film doesn't describe the circumstances of Lynn's death, and
offers no opinion on assisted suicide. (The endorsement of the actions
of Lynn's mother implicit here is mine and not its.) This is neither
bravery nor cowardice on the part of the film-makers: it is an astute
decision made to ensure the debate about this film does not became a
debate about assisted suicide. "Voices from the Shadows" is not about
the tragic circumstances of Lynn Gilerdale's death: it is about the
tragic circumstances of her life.

Sophia Mirza's ME was similar to Lynn's, and far worse than mine. As a
girl, Sophia was bright and beautiful and lively - and then she
developed ME, and suddenly she was none of these. But her doctors
didn't believe that such a change could be due to physical causes and
so they insisted she simply didn't want to be well. In the most
excruciating sequence in Voices from the Shadows, we hear the
recording Sophia secretly made when those doctors, accompanied by
police officers, forced their way into her home and took her to a
secure mental institution. There, like other patients profiled in the
film, she would no doubt have been forced to exercise - to prove to
her that there was no physical reason why she could not. (Exercise
only worsens the symptoms of ME; nevertheless, it is still prescribed
as a treatment.)

But she was too ill even for that. The stress of being committed to a
mental hospital when she had no mental illness, of being fed food she
couldn't eat, of not being allowed to sleep when she needed to, and of
being treated at all times as if she was physically healthy, made her
symptoms deteriorate to such an extent that a judge eventually ruled
she should be allowed home. She never recovered and, two years later,
she died. Sophia Mirza was bullied to death by medical professionals
who ought to have helped her; no criminal charges have been brought
against them. An autopsy revealed that Sophia's spine was severely
diseased. Her illness had been purely physical.

"Visions from the Shadows" isn't technically or artistically
impressive. It isn't the bold new work of a brave new film-maker. It
is a howl of desperation from co-directors Natalie Boulton and Josh
Biggs - the mother and brother of a young woman with ME - on behalf of
those who cannot howl themselves. Much of it consists simply of people
sitting and talking about ME. What makes this invaluable is that the
things they say are seldom said. Or rather, they are seldom listened

No documentary has ever devastated me like "Voices from the Shadows."
Unless you are an ME-sufferer, it's unlikely to have quite such a
powerful effect on you - and I am glad of that. I couldn't in good
conscience urge people to see a film that would do to them what
"Voices from the Shadows" did to me.

Although "Voices" joined "The Artist" and "Albert Nobbs" in winning a
prize at 2011's Mill Valley Film Festival, it has no theatrical
distribution deal. Boulton and Biggs sell European DVDs of the film
through their website; outside Europe, it is streaming for $2.99 from
MUBI.com. http://mubi.com/films/voices-from-the-shadows

I can't be impartial about this film, and I can't conclude my review
of it - if this is a review of it - with the customary, balanced
summation of why you should, or should not, try to see it. But I can,
with total sincerity, say this: if I could make everyone in the world
see just one film, this would be the film I'd choose. It's my film of
the year. It'll be my film of the decade.

As a critic, I spend my life hoping to find films that will be speak
to me. "Voices in the Shadows" goes beyond that. It is a film that
speaks for me. And I want you to hear it.

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