Le Merle – Absolute Beginners (subtitles)

Le soin entretient un drôle de rapport à l’ordre: il vise un retour à l’équilibre tout en échappant à une domination. Il appelle une attention, il engage une présence, il implique une enquête: il faut suivre et lire des signes, les réagencer pour ouvrir la voie d’une transformation. Dans le système de santé qui délègue des personnes pour en soigner d’autres, on rapporte que les conditions faites au soin sont devenues écrasantes ou misérables, souvent les deux à la fois. Tout est un cubicule et c’est tout qui va mal. Seulement, il arrive qu’il se passe quelque chose: le soin peut déborder les forces qui cherchent à le confiner. Ce numéro du Merle témoigne de ces échappées, des paroles et des gestes qu’elles produisent, ici et ailleurs. Il a été édité par Suzanne Beth et Anne Lardeux.

Absolute Beginners (Fabrizio Terranova, 2018) is a film featuring six people living with the early stages of Huntington’s disease – a rare hereditary and neuro-evolving disease that brings its carriers into deep metamorphosis, body and soul. Deriving from regular group meetings of the six Hungtingtonians, the film strives to move away from the dramatic tone usually adopted to deal with Huntington’s, in order to formulate and share the forces they harness to reinvent themselves along this process.The film was conceived in close collaboration with members of the Dingdingdong collective, notably Alice Rivières, whose spoken part in Absolute Beginners is excerpted below. An interview with her is also published in this volume.

Absolute Beginners
Alice Rivières

1.
What I want to say about that announcement,
what I’d remember
if I had to use one sentence,
is that it lasted 15 minutes.
It’s getting much better now,
but that’s still something
I’m angry about.
Because I keep thinking about it
and see nothing that justifies it.
I can forgive all the other blunders I’ve had
to endure during my test
– and there were a lot –
because I know how hard
it is for doctors
to announce things like that.
They’ve not been trained to do it,
and they’re scared of incurable illnesses…
But I can’t find any excuses
for the fact that it lasted
only 15 minutes.
And in those 15 minutes,
I absorbed an awful lot of terrifying words,
they spoke only of the worst sides
of the whole thing
and told me only that it would be terrible.
And then, they turned to my relatives,
they stopped talking to me,
saying that for them too it would be terrible.
They said I couldn’t think about having children
because what kind of mother would I be?
All this stuff in one quarter of an hour!
And I really experienced it as a death sentence
at that time.
It was 11 years ago.
I stepped out of that office totally shattered.
There’s no other word for it.
Shattered in one million tiny pieces.
(…)

4.
In this whole story,
something clicked for me when…
things started to get better for our mother,
but more importantly,
when I took the test,
the first thing she told me
when I said to her that I was a carrier, was:
“Look at what you’re gaining,
not at what you’re losing.”
This sentence has completely reversed
my feeling and my philosophy of it all.
I thought: “If she tells me that,
now that she’s in the middle of the adventure,
then I’m only…
at the very beginning!”
She’d also written me a note at that time
which she signed:
“Your pioneering Maman.”
So I said to myself:
“I do have to trust in things like these.
They are incredible treasures,
let’s have a strong faith in them.”
It turned out to be true after all,
given how richer my life has become!
I am learning new things about myself,
about life.
I’ve learned how to love life in a way…
I wasn’t loving life that much before!
That’s heaven sent, really!
My mother adores life too
in spite of her suffering
from her advanced Huntington’s.
So far…
so good.

5.
I take what’s happening
with tenderness.
Like you do with someone you love even so, who goes through hardships.
I have to live with that
and must take everything
in stride to live that well.
Not to do so would be moronic,
you might as well kill yourself then,
and that’s not at all what I want!
I dont have a clue as to
what it will look like at the end,
but in any case, right now,
it’s all rather nice.
I’ve had to endure some hard times when I didn’t really understand much
of what was happening.
But now I’m okay.
I’m in a nice plateau.
But it’s never been
complete horror either…
I’m lucky!
I think it’s also because…
I really want to anticipate.
I don’t want it to turn into horror,
so I keep working on that… (…)

7.
Without that,
there wouldn’t be anything left.
None of the things I believe and think
about Huntington’s,
nothing would have been possible without the collective.
It’s a very simple in fact:
without that collective
I would’ve remained
those thousands of millions of little pieces,
shattered as I was
after the test announcement.
And very important also:
it’s that very collective
which made me want
to meet other people in my situation.
Before, I wanted to,
but I didn’t know how.
And it was scary.
Since I was scared of Huntington’s,
I was also scared of them,
who weren’t friends yet:
my fellow Huntingtonians.
I was afraid of them
because I was afraid of the disease.
And…
it’s been a whole series of moves that led to…
since with the collective I started to transform…
Well, I mean, it just happened:
my fright turned into interest.
My fright turned into something
that was at the heart
of a very exciting construction site.
I was no longer afraid. ¹

Film still and subtitles excerpted from Absolute Beginners (2018), a film by FabrizioTerranova.→