2023-11-26 06:00:02
Violaine Berlinguet was 29 years old when she contracted Guillain-Barré syndrome. Four years later, this Olivétaine has serious after-effects which handicap her on a daily basis. She published, under the name Violaine Vim, her story in a book “Patiente”, published by Bold.
When we arrive at Violaine Berlinguet in Olivet, in Loiret, she finished her rehabilitation session with her physiotherapist. She takes off her comfortable jogging pants and puts on a printed skirt, a black sweater and boots. At 33, despite illness, she remained very stylish. “When you’re a 30-year-old disabled woman, you’re not trash.” she thunders.
His life changed in February 2019. “I felt extremely tired. My head felt very heavy. I kept thinking. I said to myself ‘one day my head is going to explode’. On the 14th, I started vomiting at home. And on the 21st, I was in intensive care. I had been detected and Guillain-Barré syndrome.”
This autoimmune neurological disease attacks the nervous system. Quickly, Violaine finds herself completely paralyzed, as if locked in her own body. She couldn’t communicate because of her tracheotomy. She was hooked up to a breathing machine.
“This illness is not simply: you sleep for three months and you wake up like Sleeping Beauty”tells the Olivétaine. “It’s really very intense pain, which pushes you to total paralysis, and you fight for everything. You fight to live, against the pain. You no longer have any moment of pleasure. You are no longer capable to talk with people. We take care of you continuously, we turn your body as if you were a bag”.
It’s quite violent to go from overflowing energy to a complete standstill, feeling like you’re in a dead body but totally alive.
She remembers precisely her three months in intensive care. “Every evening, I have anxiety about the confinement of the night, of remaining locked in this body eternally.”
After the hospital, Violaine Berlinguet went to a rehabilitation center where she remained until March 2020. In time to be confined by the Covid-19 epidemic like all French people. It was at this time that she began writing a logbook, “so as not to forget and not to sublimate what had happened by removing painful passages”. She wrote first for her son, “so he understands why I was gone for so long.”
She mixes her drawings with her texts. “Drawing myself is a way for me to accept this new disabled body. Drawing allows me to convey the emotions that my words are not enough. It’s therapeutic. It’s my lifeline, which I can do tired or not, mobile or not”.
Then her manuscript remained in the drawer for four years until she decided to publish it. “I dedicated this book in particular to these women in their thirties who could identify with someone like me. I find that we are not very represented in the testimonies. I have searched for when I was in a rehabilitation center. I told myself that other people would find comfort”.
Drawing is “my lifeline, which I can do when tired or not, mobile or not,” explains Violaine Berlinguet. • © LAV / France 3 CVDL
His title, Patient“the word I heard the most in my healthcare journey”. Because it had to be. She who lived life 100%, now has to take her time.
Four years after her Guillain-Barré syndrome, Violaine Berlinguet’s life has changed a lot. She found love again. She changed her hair colors. She no longer has the same job. And above all, she has serious after-effects, which are concentrated on her lower body. The thirty-year-old moves with difficulty, helped by a cane, a walker or a wheelchair, depending on her state of fatigue.
His life is now made of calculations. Anticipate that a place is accessible to people with reduced mobility. Manage effort. “We must take into account fatigability throughout the day, and plan the day according to fitness moments.”
“I need a caregiver always with me outside, if only to reassure me, because I feel vulnerable.” Violaine Berlinguet does not hesitate to ask passers-by for help. But she can still drive, thanks to her new car, where the controls are on the steering wheel.
“Redoing a license adapted for me was essential. The car is the freedom that I lost a little with my legs.”
Despite the disability, despite the pain, Violaine Berlinguet says she is happy, surrounded by her loved ones. “I am happier disabled than able-bodied. Disability allowed me to realize that life is short, that you have to find your little flame. That I have to refocus on what I wanted to do and not to bother me with the “do I dare?” I no longer bother with negative people”. She’s no longer afraid of death either. Today, she has learned to get to the point.
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