How Laurène, suffering from autoimmune retinopathy, is preparing to lose her sight

“My vision is getting blurrier and blurrier, I see fewer and fewer details of my face… which doesn’t displease me, as I’m getting older!” Laurène is gradually losing her sight, but not her sense of humor. In front of her mirror in the morning, she lives this distressing, dizzying experience: seeing her own face fade away. At 38, this Parisian suffering from autoimmune retinopathy, a rare disease of the retina, knows that she will soon be blind.

If I can’t see myself anymore, am I still here? Am I still present in the world if I can’t see myself? So, even if Laurène knows that “it’s a bit irrational”, she checks by touch that yes, she is indeed there. Despite these rather “terrifying” who sometimes assail her, she is not the type to let herself be put down. “I really want to stay the same girl”, she said in a determined tone.

“I’ve always been flirtatious, it’s part of me, so I try to put a lot of things in place,” she explains. In front of her, on her dressing table, everything from makeup brushes to lipsticks has numbered dots on them.

By scanning them with the reading pen for the blind that she has equipped herself with, Laurène can hear the description that she herself has recorded. And thus choose between the “533 nutmeg (…), a slightly pinkish beige, very autumnal and very natural” and the red “really redcurrant” from number 531.

With the help of her friends and family, Laurène has also labeled all the clothes in her wardrobe. A device that reassures her (“That way, when I can’t see anymore, I can prepare my clothes in the evening. In the morning, I think you’ll lose it, otherwise”)… while allowing him to summon up precious memories, through descriptions which are also recorded. Such as the “Scottish green of this big jacket with gold buttons”, the same green as a sweater that her father loved, and that Laurène called “papin green”.