a serious and subtly poetic self-portrait

ARTE.TV – ON DEMAND – DOCUMENTARY

“For a long time a little voice inside haunted me. You are ugly with your crooked mouth, your deformed shoulders, it’s going to get worse, you won’t be able to be happy with it, you won’t be able to do what you want, you won’t have the job. you want… One day, you will no longer be able to draw, you will no longer be able to dance… You will end up in a wheelchair…”

This is how Marion Sellenet, visual artist, presents with her voice-over this beautiful film about her degenerative disease, co-written and directed by Laëtitia Moreau.

Marion was 15 when she learned she had FSH (facio-scapulo-humeral dystrophy), which primarily affects the muscles of the face, shoulders and arms. Twenty years later, she sets out to go back in time to understand the process of what is slowly destroying her, to dissect the mechanism in an attempt to sublimate it through words and art.

Serious and subtly poetic, this personal story, carried out as an unconventional research on FSH, in particular with the Belgian specialist Alexandra Belayew, is marked by a series of verbs, “announce, transmit, degenerate, hide”. They are the protagonists of different sequences in which Marion Sellenet remembers and trusts. We immerse ourselves in his childhood with his parents, his sister, his nieces, whom we find on the banks of a river in his native region of the Cévennes or in the family kitchen.

paper silhouette

The one who sometimes plays “Wonder Woman” says it all. We hear him talk about his relationship with a man who reminds him “who fell in love with Marion, not a sick girl”we follow her to the café or to a belching quack (whose belches are supposed to heal). We attended his muscle strengthening sessions at the physiotherapist. “We must always be inventive and find new exercises, because what I can do today, I will not necessarily be able to do tomorrow.”specifies.

The intimate tone of the documentary never overflows with immodesty. Whether Marion Sellenet talks about how, from the age of 3, she could not blow out the candles or whether she discovers that her lower limbs could be affected although she did not know it, she maintains a delicate distance. This moderation fuels the deep charm of this unique self-portrait that draws on his plastic talent. In her workshop in Brussels, the young woman photographs and cuts out the future collages that illustrate and mark the film.

This aesthetic bias is as sensible as it is magical. Incessantly, he humorously composes and recomposes his paper silhouette, working on his fear with scissors. ” of [se] degrade »losing the use of your arms, your legs… As she very well sums it up: “The art of collage is to keep the pieces together in coherence, and FSH does the opposite, it fragments me…” And it is between the two where a magnificent path of repair is revealed.

Although she refused to see FSH people for a long time, Marion Sellenet met Vincent, who is in a wheelchair: “My medicine for drama, for self-pity. » Together they visit a Giacometti exhibition and compare their FSH bodies with statues of the Swiss artist. “They represent exactly what remains anchored in the deepest part of me.Vincent declares. The desire to get up and walk. But in my head I’m still a walking man. »