Published on November 3, 2024 at 12:32 p.m. / Modified on November 3, 2024 at 12:34 p.m.
Living with
What sound does a diagnosis make when it falls? In November, “Le Temps” gives a voice to those who have seen their daily lives turned upside down after the announcement of a rare or little-known disease. Between pain and resilience, they “live with” it and take us into their damaged destiny.
It all starts with a pain in his right shoulder, sharp but bearable, while he shares a drink with his friend Emilie in a bar in Paris. It is Saturday July 8, 2023, the weather is mild, mild even, and the next day, Marc has to fly with his 9-year-old son to Thailand where his brother lives, on the island of Koh Tao.
Returning home around midnight, the neurobiologist, then 48 years old, noticed that the pain was mounting like a galloping horse. “It was very special. Generally, when you are in pain, the pain comes and goes. Here, it increased in constant flow and resisted all medications,” recalls Marc, who still went to bed that evening, anxious to gain strength for his departure the next day.
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