"Rosy" : atteinte d'une sclérose en plaques, Marine Barnérias raconte l'"aventure singulière qui a un peu changé ma vie"

Marine Barnerias has just released, in the cinema, a documentary film, ""Rosy"".Rosy is not the name of a friend, but of her illness, multiple sclerosis, an autoimmune, incurable disease, which attacks the central nervous system.The diagnosis fell seven years ago.She was 21, was a student and during a sporting event, she lost her sight.Under her mother's advice, she consults an ophthalmologist who invites her to do emergency exams.The obstacle course begins.

franceinfo: the announcement is ""shattering"" because when you learn it, the doctor who is in front of you, who is a woman elsewhere, does not take any glove.It was dramatic for you.

Marine Barnerias: There is no school.We do not learn how to announce things, it is not innate this kind of thing.So this is already, one of the first things that this film tries to say: how to say today, what is ugly, what is ugly, which is filthy, what we don't like.It is true that at the age of 21, there is life in front of you, you are all fire all flame.You can't imagine that a multiple sclerosis will get into your life.It is an autoimmune disease, that is to say that it is my own organism that is self-destructing and I do not know what life has in store for me.And from that moment, when this woman enters this hospital room, that she gives me brochures and she says to me: ""Listen, you are suffering from multiple sclerosis, I have my serviceto finish.Read what is on these prospectuses, it will tell you a little what you have "".You say to yourself: ""Wait, already, what does that mean that filthy word? What is this binz? It's not possible, I'm going to wake up!"".

Where normally, we lose our voice, you have decided to use it to communicate.

This film just tells a singular adventure that has changed my life a little and that shows that in fact, we have everything in us and that we often tend to forget it.You just have to try to get this little voice, which knows much better than ourselves, what we need.

In this documentary, we obviously discover more who you are.We follow this course, from the announcement to the decision to make a trip, what we will call an initiatory journey, because that's really like that you build it.It starts with New Zealand, in the middle, there is Burma and it ends with Mongolia.This trip will be totally funded by a prize pool fed by your close entourage and the first thing that will ultimately come up against you, is to accept that others can know that you are sick.

Exactly.I think I was someone connected to what others could think of me and therefore, in fact, to have this ""sclerotic"" label, it was impossible.I didn't want other people to think I could be weak.There was this kind of bubble a little superficial which surrounded me and which prevented me from being close to my flaws.And this famous kitty is 344 participants.Basically, I controlled this kitty, that is to say that it was only going towards people I knew.

Except that it leaked on social networks and I found myself with strangers from all over France.I said to myself: ""But it's not possible, people I don't know, know now"".In fact, all these strangers, who participated in the trip, planted this little seed which told me to start cohabit with what I didn't like, my sclerosis in plates.And as if a mask had fallen, I said to myself: ""But thin, I cannot reimburse my tickets, I am forced to leave, I cannot retropedalize.""

It's like a diary, you are accompanied by a single companion, your mobile phone.Did you also hold?

Completely.I never imagined that a film would exist. Je suis partie avec ces 344 participants dans mon sac à dos, en me disant : ""Mince, punaise, il va falloir que maintenant je puisse leur communiquer mon aventure"".I communicated in an extremely fast, simple and effective way, I did not want it to become a constraint.I had a little Facebook page and I was posting at the same time, my anxieties, my fears.And I realized that as the miles go, this phone became like a companion.

In this film, it feels like the phone is omnipresent.He was very present at the beginning and much less after.After a year of travel, I only returned with 30 hours of images, which is really ridiculous to make a film.This mobile phone has disappeared as the kilometers.At first, it was a companion, he immortalized fear, hatred, this multiple sclerosis which is something I hate, with which I do not want to cohabit.

She becomes pink because in sclerosis, there is rose and I found it much more elegant.Then the silence arrived with this second stop in Burma, the phone was evacuated as you go.And in Mongolia, there was no more sclerosis.There was Rose who had returned to my life and we started to cohabit together.This phone, still embodies everything I know, the roots, the family and it allowed me to tame certain fears which I thought of never being able to get rid of.

It was seven years ago.Where are you today?Where are the thrusts?How do you feel ?

I gave the keys to Rosy.We are rather in colloc 'and it goes pretty good.She still hasn't pricked me, so it's really a message of cohabitation and therefore I try to keep it as a compass. Et puis, au moment où ça n'ira pas bien, j'aurai ce film pour me dire : ""Marine, n'oublie pas"".