Over the roofs and the waves of the Mediterranean, a coded light message from Pone, a figure of French hip-hop, rises from the lighthouse of the Museum of European and Mediterranean Civilizations in Marseille, breaking the shackles of Charcot disease.
Since mid-January and until July, it is at dawn, one hour before sunrise, and at dusk, for one hour after sunset, that this ray of light emerges intermittently from the tower du Fanal, built in 1644 at the entrance to the Old Port and today part of the Mucem, this society museum for which art can support in the face of illness.
Designed by the Franco-Luxembourg artist duo Brognon-Rollin, this light beam relays a message from Pone, co-founder of a leading hip-hop group in France in the 1990s, the Fonky Family, who learned in 2015 that He suffered from Charcot disease, also called amyotrophic lateral sclerosis.
"Everything is possible"
This incurable disease, which affects around 8,000 patients in France, results in progressive paralysis of the muscles, also affecting speech and swallowing.
She deprived Pone of his motor skills and his voice, but thanks to software that reads the movement of his pupils on a keyboard, he managed to write with his eyes.
In conversation with him, David Brognon and Stéphanie Rollin captured and archived the movement of his pupils when he said: “
I think I'm saying something stupid, but so true about me: everything is possible”
.
And the journey of this man born in Toulouse around fifty years ago but for whom Marseille is a city "
of heart and soul
", illustrates this sentence, despite this illness "
with a dark prognosis, the outcome of which is fatal after three to five years of development on average
,” according to the National Institute of Health and Medical Research (Inserm).
“
Despite the prognosis and the diagnosis, always believe that everything is possible
,” insisted Pone during the inauguration of this installation in Marseille.
Speaking via video, from the bed where he is confined to his home in Gaillac (Tarn), via this computer voice which transcribes the words he forms using his pupils, he made himself draw emotional smiles on all the faces of the spectators gathered at the Mucem.
“
Cruelly prevented
” by this illness, as the artist David Brognon recalled, Pone continues to create, to inspire, to be a “
pathfinder
”, hence the title of the installation in Marseille, “The Headlight".
Read alsoThe moving testimony of Marina Carrère d'Encausse on the fight of her companion suffering from Charcot's disease
A “terrific” message from Pone
With the support of the medical staff who follow him at home, his wife Wahiba and his daughters, Pone produces musicians, creates, like this solo album “Kate and Me”, composed, produced and mixed in 2019 only with the eyes and inspired by British singer-songwriter Kate Bush.
This idol of Pone wrote the preface to his autobiography,
Un peu plus further
, published last year by JC Lattès.
“
Illness is very complicated every day, it’s not the world of Care Bears, but as we often say with Pone, sometimes we thank the illness because it makes us experience these strong moments
,” confided Wahiba Gallart recalling their fight, via their association Trakadom, to allow patients suffering from chronic illnesses, wherever they are in France, to stay at home and benefit from adequate assistance.
For Martine Perez, who accompanied her husband Germinal to the end, who suffered from Charcot's disease, "
this message from Pone is fantastic
" to raise awareness and encourage people in the face of this "
terrible disease which affects people of all ages
".
This ray of light above the Marseille pier also invites, as one of the Mucem commissioners, Justine Bohbote, points out, “
not to consider people with chronic illnesses only as sick people
”, but to see all the poetry, the creativity and beauty they can express.