2023-09-18 10:08:00
With her tablet on her knees, Caroline gives a shy smile as a greeting. With her right hand all curled up and motionless, she slowly slides her left middle finger across the screen to communicate. After taking a breath, the heavily disabled thirty-year-old – “you have to call a spade a spade,” she says – struggles to articulate a few barely audible words that her mother repeats out loud to arouse her daughter’s approval. Or collect his disapproval, which then manifests itself with an air of a bit of annoyance at not having made himself understood clearly.
A bright future in a dark moment
For Caroline, it was not a night, but a dark day that turned her life, hitherto bathed in carefreeness, as she describes it to us today and promised “a radiant future”. It was a day in January 2010, the year he turned 25. At the time, “not ugly, not stupid, not poor”, according to her own words, qualified as a management engineer, she was in a meeting with a client when, suddenly, she felt like a slight dizziness. Thinking she’s having a drop in blood pressure, she pretends she has a migraine so she can slip away and go home to rest. The young consultant doesn’t have time to gather her things before she collapses. Conscious, but unable to move, she is convinced she is having an epileptic seizure and fears more than anything that she will swallow her tongue. Colleagues rush around her. Some time later, the firefighters and paramedics arrived and then, in the elevator, she lost consciousness. Caroline has just been “devastated by a terrible cerebrovascular accident” (CVA).
In the world of Caroline, devastated by a stroke at the age of 25. ©cameriere
When she wakes up in the hospital, following a brief coma of barely 24 hours, the young girl discovers herself inert and mute. Totally paralyzed, unable to move a knuckle, barely her eyelids, and unable to utter a single word. While her memory and mental faculties remain intact, she is condemned to inertia and silence, locked in her body, victim of locked-in-syndrome (LIS), or confinement syndrome, this dreaded neurological condition which imprisons around a hundred people in Belgium.
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“I didn’t realize right away that I had a very severe handicap” and probably also she didn’t realize that from that moment, her second life would begin. With his painful losses: giving up his autonomy, his professional career and, worst of all, his desire to have children. “My desire to have children has evolved from ‘later’ to ‘adoption’ to ‘weekend foster care’ to ‘a dog’ to ‘can’t take care of anyone else’ . Although my accident happened in an instant, the acceptance and realization of locked-in-syndrome took a long time.”
Progress through hard work
Plenty of time to accept and patience to progress. In the hospital rehabilitation center where she will stay for a year and a half, convinced that she can recover part of her physical faculties, Caroline demonstrates exemplary determination. The work pays off: little by little, she manages to mobilize a few facial muscles, the smile returns. Then, it is the turn of the middle finger of the left hand and the elbow to timidly begin to respond. The nursing staff are surprised and amazed at the progress. Determined, she will manage to articulate words. “I still hope to regain a little more mobility and improve my gibberish,” she admits today. In my eyes, this very atypical condition offers a lot of hope, unlike many degenerative diseases. The advantage of having fallen so low is that we can only hope to rise once more”.
Through willpower and work, Caroline, who suffers from locked-in-syndrome, regained the use of a finger on her left hand. ©cameriere
That said, although she hopes, Caroline remains lucid: “A part of my brain is dead, I don’t expect that we will be able to resurrect it. But perhaps stem cells will one day make new neurons. Or maybe we can do lots of things with thought”. Who knows…
Whatever happens, today, his weeks are busy, punctuated by rehabilitation, particularly in the swimming pool, speech therapy, physiotherapy, etc. But also by his various activities, writing exercises, painting, Kaligrav computer graphics and laser engraving workshop, the creation of photo albums, the theater, outings and stays with her friends from the Order of Malta, to whom she dedicated a book entitled “Maltese Adventures”, from which we have selected some excerpts for ease of interview.
Then, there are all these precious moments, with family, and especially with nieces and nephews… “My disability revealed to me the strength of family solidarity. My parents surround me admirably, my sisters and brothers-in-law do their best, my cousins, uncle and aunts help me from time to time and my young nephews add to my joy of life.”
Through willpower and work, Caroline, who suffers from locked-in-syndrome, regained the use of a finger on her left hand. ©DR
So, what are his greatest pleasures today? “To please,” she replies, “to test revolutionary new equipment, like my first voice synthesis which allowed me to take a giant step forward in my communication, to play a board game, to chat live, to travel, do something crazy…” As ? “Take a ride on a mechanical bull until you fall, rent a 4×4 electric wheelchair to go to the beach by the sea, be carried up 40 steps to enter a temple, do the Dalton Terror in Walibi and be scared during the slow climb because you are barely held by the harness, managing to fit in a touk-touk, doing the 20 km from Brussels in an ordinary wheelchair…”. So much madness that Brabançonne has already experienced.
Among the follies of Caroline, suffering from locked-in-syndrome, the experience of the mechanical bull. ©DR
Big depressions to the point of thinking regarding euthanasia
From her life before the accident, Caroline kept all her senses, vision – “my sight, a crucial sense, works perfectly, apart from slowed reading” -, taste – “following being fed through a tube, I rediscovered the joy of eating. Being able to share a meal is socially crucial” -, touch – “the fact of having preserved my bodily sensitivity helps me a lot in my rehabilitation” –, his emotions, his combativeness, his sense of humor… His smiles and his laughter, sometimes to the point of strangulation – as when she recounts “her bowls” taken from the time when she was water skiing – continues to brighten up her face regularly, even if the blues and major depressions, to the point of thinking regarding euthanasia, have obviously also been very present throughout all these years. “Over time, there are fewer of them and they are better controlled,” she tells us. By having almost nothing, we realize what remains despite everything”.
And above all, Caroline retained all her mental faculties. She insists. “To my great relief,” she writes, “my brain is completely intact. I retain my memories, my knowledge and my personality. I have kept many friends and I remain very sociable”.
The gaze of others… ©cameriere
The embarrassed look of others
However, when foreign individuals come across Caroline, “they don’t dare look at me,” she regrets. Believing me necessarily mentally defective, they look away, they deny me, as if I did not exist. As if, because I am severely disabled, I am insignificant, which is terribly hurtful. Not knowing how to greet me, the adults refrain, unlike the children who, spontaneously, dare to stare at me and ask questions. I always enjoy seeing the adult pull the child’s arm to stop him staring at me. Adults are often embarrassed. It’s normal, I’m used to it.”
“One Thursday, I learned that I have 95% cancer cells in my bone marrow. The verdict is final”
However, personally, she says she is “delighted to explain the strange consequences” of her stroke and to “raise awareness of locked-in-syndrome”. “I like to symbolically describe the LIS as the damaged cable between my brain-computer and my body-printer. This is more meaningful for many, especially children. This helps explain why some information still gets through and everything works almost perfectly, although my printer is sometimes a little rusty and some elements get stuck.”
The fact remains that, for Caroline, this rare and little-known handicap is “a filth”, which makes her think of “a punishment from the gods of Greek mythology. Is it better to be disabled from birth or by accident? Is it better to have an accident resulting in a disability or to have cancer? Is it better to be quadriplegic or locked-in? Each step has advantages and disadvantages and it is impossible to know the different situations. We do not choose our disability, we endure it and we live as best as possible with it.”
The logo of our series “Words for evils” ©Raphaël Batista
Words for ailments
Through “Words for Evil”, La Libre has chosen to give voice to people affected by various illnesses, both physical and mental, common or rare. Meetings which aim to understand their daily lives, their difficulties and hopes, to share their outlook on existence. It is also a way of reminding us that no one is safe from these accidents of life. This series can be found every other Monday on our site.
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