2024-09-19 12:18:57
Published on 09/19/2024 2:18 p.m.
Video length: 3 min “Already, my face is disappearing in the mirror”: how Laurène, suffering from autoimmune retinopathy, is preparing to lose her sight “Already, my face is disappearing in the mirror”: how Laurène, suffering from autoimmune retinopathy, is preparing to lose her sight (ENVOYÉ SPÉCIAL / FRANCE 2)
Laurène is a 38-year-old Parisian, a bubbly type. However, a terrible ordeal awaits her: suffering from a rare retinal disease, she will lose her sight in a few months. She told “Envoyé spécial” how she is meticulously preparing for her future life as a blind person.
“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”.
In addition to all these preparations which took her months, the young woman set up “Locomotion lessons with the cane more intensive” et “learned the basics of Braille.” So many efforts that she knows are essential on a daily basis to maintain her autonomy as much as possible…
Excerpt from “Laurène, last looks”, a report to see in “Special Envoy” on September 19, 2024.
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What strategies does Laurène use to maintain her sense of identity as she loses her sight?
Table of Contents
Losing Sight, Gaining Strength: Laurène’s Inspirational Journey with Autoimmune Retinopathy
Published on 09/19/2024 2:18 p.m. | Video length: 3 min
Meet Laurène, a 38-year-old Parisian who is bravely facing the devastating reality of losing her sight due to a rare retinal disease called autoimmune retinopathy. Despite the daunting challenges that lie ahead, Laurène is meticulously preparing for her future life as a blind person, and her story is an inspiration to us all.
The Fading Face in the Mirror
Laurène’s mornings begin with a heart-wrenching ritual: gazing at her reflection in the mirror, only to see her face disappearing before her eyes. Her vision is rapidly deteriorating, and she knows that she will soon be completely blind. However, instead of succumbing to despair, Laurène has chosen to face her condition head-on, armed with an unwavering sense of humor and determination.
Preserving Her Identity
As her sight fades, Laurène grapples with the existential question: “If I can’t see myself anymore, am I still here? Am I still present in the world if I can’t see myself?” To reassure herself, she checks her reflection by touch, ensuring that she is still present in the world. This simple act is a testament to Laurène’s resilience and her unyielding commitment to remaining the same person, even in the face of blindness.
Adapting to a New Reality
Laurène has taken it upon herself to prepare for her future life as a blind person. Her dressing table is now equipped with makeup brushes and lipsticks bearing numbered dots, which she can scan using a reading pen for the blind. This ingenious system allows her to choose her makeup with confidence, relying on her recorded descriptions of each shade. From the “533 nutmeg” to the “531 really redcurrant,” Laurène has taken control of her beauty routine, ensuring that her sense of style and femininity remain intact.
Labeling Memories
With the help of her friends and family, Laurène has also labeled all the clothes in her wardrobe, creating a system that not only reassures her but also summons precious memories. Each description, recorded in her own voice, evokes emotions and stories, such as the “Scottish green” of a jacket with gold buttons, which reminds her of her father’s favorite sweater.
Learning to Navigate the World
In addition to these preparations, Laurène has embarked on intensive locomotion lessons with a cane, learning the basics of Braille, and acquiring essential skills to navigate the world as a blind person. Her proactive approach is a testament to her courage and determination to live life to the fullest, even in the face of adversity.
Laurène’s Story: A Beacon of Hope
Laurène’s journey serves as a powerful reminder that even in the darkest of times, there is always hope. Her unwavering spirit, her creativity, and her resilience inspire us all to face our own challenges with courage and determination. As she prepares to embark on a new chapter in her life as a blind person, Laurène’s story is a shining beacon of inspiration, illuminating the path for all those who follow in her footsteps.
Keywords: autoimmune retinopathy, blindness, rare retinal disease, inspirational story, overcoming adversity, hope, resilience, determination, courage.
Meta Description: Meet Laurène, a 38-year-old Parisian who is bravely facing the reality of losing her sight due to a rare retinal disease. Read her inspirational story of preparation, adaptation, and resilience in the face of adversity.
Image Description: A photo of Laurène, a 38-year-old Parisian, holding a reading pen for the blind, with a determined look on her face. The image is accompanied by a caption: “Laurène, preparing for her future life as a blind person.”
– What challenges did Laurène face when diagnosed with autoimmune retinopathy?
Title: “Fading Away: Laurène’s Courageous Journey with Autoimmune Retinopathy”
Meta Description: Meet Laurène, a 38-year-old Parisian preparing to lose her sight due to a rare retinal disease. Discover her inspiring story of resilience and determination as she adapts to her new reality.
Keywords: Laurène, autoimmune retinopathy, retinal disease, blindness, accessibility, assistive technology, Braille, cane training, daily living skills, France Télévisions, Envoyé Spécial.
When Laurène, a vibrant and energetic 38-year-old Parisian, looks in the mirror, she’s met with a distressing reality: her face is slowly disappearing. Diagnosed with autoimmune retinopathy, a rare and debilitating retinal disease, Laurène is preparing to lose her sight in a matter of months. Yet, despite this daunting prognosis, she remains determined to live life on her own terms.
As she shares her story with Envoyé Spécial, a news magazine program on France 2, Laurène takes us on an intimate journey of adaptation, resilience, and hope. With an infectious sense of humor, she navigates the challenges of her condition, refusing to let it define her.
“I see fewer and fewer details of my face… which doesn’t displease me, as I’m getting older!” she jokes, her wit and humor a testament to her courage in the face of adversity.
To cope with her gradual loss of vision, Laurène has developed innovative strategies to maintain her independence. She’s meticulously labeled her makeup and cosmetics with numbered dots, allowing her to identify them using a reading pen designed for the blind. Her friends and family have also helped her label her entire wardrobe, with descriptions that evoke cherished memories. Among them is a “Scottish green” jacket with gold buttons, reminiscent of a sweater her father loved.
Laurène’s preparations extend to her daily living skills, as she’s undertaken locomotion lessons with a cane and learned the basics of Braille. These efforts, she knows, are crucial to maintaining her autonomy as her vision deteriorates.
This inspiring story serves as a powerful reminder of the human spirit’s capacity for adaptation and resilience. As Laurène faces an uncertain future, she remains resolute in her determination to stay true to herself.
“I really want to stay the same girl,” she affirms, her voice filled with conviction.
With her remarkable courage and resourcefulness, Laurène is an inspiration to us all, showing us that even in the face of adversity, there is always hope and always a way forward.
Watch the full report on Envoyé Spécial
If you’re interested in watching Laurène’s courageous journey, you can find the full report on Envoyé Spécial on France Télévisions’ website and mobile application (iOS and Android).
