ARTE RADIO – FRIDAY FEBRUARY 11 – ON DEMAND – PODCAST
Mathilde has a lover and a child. She works, loves “going out with your friends, drinking and eating well”. And then she has Gilles, her roommate since childhood, almost a full member of the family. To evoke this singular companion, the syndrome of Gilles de la Tourette, the journalist Camille Descroix chose a sound immersion in the daily life of her big sister, in Brittany.
From this neurological disease characterized by vocal and motor tics, Mathilde mainly has vocal manifestations. His « ah ah » untimely during conversations, walks, punctuate the podcast. Mathilde tells her story, her little sister deciphers. With nice words, and a lot of humor, which seems to be a family trait.
“Gilles doesn’t interrupt him, he inserts himself between his words or when he breathes. It’s a bit like he’s found his place.” says the journalist. Over the course of the recording, where the listener quickly gets used to the vocal tics of the young woman, Camille Descroix sweeps away the ideas received on this not so rare pathology – it affects one in 200 children – and too often caricatured in the media. and TV series.
Joyful cohabitation
No, obscene remarks (coprolalia) are not a cardinal sign of Gilles de la Tourette’s syndrome, the vast majority of “tickers” do not have any. Just as it does not rhyme with mental illness or intellectual disability. Above all, and it will surely be a breath of fresh air for the families concerned, Mathilde’s story shows that if vocal and motor tics are a real handicap, especially social, they can be experienced without too much drama.
Retracing her career, the young woman describes the stratagems that had to be invented (such as singing to hide her tics when she started working in the restaurant business), the embarrassing situations (at school, in particular) and the misunderstandings sometimes caused by vocalizations or uncontrolled gestures.
But, she says it with conviction, she made sure that Gilles could integrate into her daily life. She leads the life she wanted, and does not suffer much discrimination. His happy cohabitation with Gilles sometimes even arouses the sympathy, even the admiration, of his clients.
The podcast talks little about the medical aspects of Gilles de la Tourette’s syndrome and the possibilities of treatment. The journalist, however, gave the floor to a “voice doctor”, a phoniatrist, who performs injections of botulinum toxin in the vocal cords to counter very debilitating vocal tics in certain patients. Because it should not be forgotten, Gilles is for some a very cumbersome companion.
Gilles, my sister and meby Camille Descroix (Fr., 2022, 20 min).