Like a dark veil that hangs over the world.
In January 2019, Elisabeth Quin revealed to be suffering from double glaucoma, one in each eye, a degenerative disease of the optic nerve which causes progressive loss of sight.
In a book entitled "La nuit se lève" (Grasset), the presenter of "28 minutes", broadcast on Arte from Monday to Saturday, confided her fears and her fight against this evil which affects 1.5% of the population aged over 40 years old, and which is one of the leading causes of blindness in developed countries.
Twenty months after the release of his book, we wanted to know if the disease had gained ground.
In her dressing room, before joining the spotlight of her show, the silver-haired fifty-something confided.
How did you find out about your illness?
ELISABETH QUIN.
Very myopic since adolescence, I was aware of suffering from an eye problem: I could see poorly, and less and less well, without worrying about it.
On the advice of a friend, I still decided in 2008 to make an appointment with a renowned ophthalmologist.
In his office, this old gentleman, steeped in science and inhumanity, gave me his diagnosis, coldly and without wearing gloves.
The word glaucoma knocked me to the ground: it meant a drama feared by all
curvy people
, loss of sight.
Without further explanation, I found myself on the sidewalk, alone and vacillating.
A terrible memory.
A brutal behavior a little too common among doctors, according to you ...
At the beginning of my medical career, I had bad experiences with these
knowing people
, well wedged in their chairs, who do not take any precautions to announce terrible news.
Even though they are great specialists, they have been used to behaving with a distance that can amount to contempt.
The patient is seen as a pathology and not as a human being.
Anything related to emotions, affect or worry is considered a waste of time.
It is unfortunate, they do considerable damage.
After entrusting my eyes to a crook and two sadists, I am now taken care of by sensational and benevolent doctors, notably at the Quinze-Vingt hospital in Paris.
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What was your first reaction after the diagnosis?
I was scared because I knew it was a progressive and serious disease.
I was barely 40 years old.
It was a blow to the face that I was going to lose my eyesight.
Refusing to admit this connection between the disease and me, I went through a period of denial that lasted six months.
It seems it's a classic reaction to hearing such news.
The embarrassment I felt to see had disappeared, another psychosomatic thing!
I had become again only myopic, very myopic.
Then a friend reasoned with me.
I stopped riding the ostrich and made an appointment with an ophthalmologist.
The Arte presenter suffers from glaucoma.
According to Inserm, 800,000 patients are treated in France for this disease.
LP / Philippe de Poulpiquet
What were you afraid of?
To no longer be able to do all the things I love: to contemplate my daughter's face, to go to the show and to the cinema with my lover, to be ecstatic in front of a landscape, to admire a painting, to work ... I who devour the press and the literature, my greatest anguish is not being able to read.
A blind friend advised me to learn braille in advance.
But, I don't, out of superstition and because I'm not at this point yet.
What care did you receive?
In 2018, I had a laser operation called an iridectomy, which involves making two holes in the iris: it relieves and lowers the pressure in the eye.
Every day, I administer a cocktail of eye drops morning and evening.
The problem is the side effects: nausea, headaches, shortness of breath, insomnia, itchy eyes and redness ... The worst, both benign and comical, is the hyperpilosity, which particularly affects my face.
Being visually impaired and a woman with a beard is a bit of my double pain!
On a daily basis, I also respect a certain hygiene of life: a lot of oxygen, a calm existence… I have a particularly damaged eye and the operation will one day become essential.
But this intervention is very risky and I try to delay it as much as possible.
Perhaps it will take place within five years, when surgical procedures will be better mastered.
For now, as practitioners say, the
risk-benefit
balance
is not favorable.
I am therefore on stand-by.
How do you react when you meet blind people?
If it were up to me, I would ask them a lot of questions, to try to understand how they live and what they feel.
I admire: the blind are very numerous to experience joy, fullness, optimism.
They hit a wall but live their existence without complaint, in confidence.
Some even surpass themselves, like Salim Ejnaïni, whom I received in
28 minutes
.
Struck by cancer of the retina at the age of 6 months, he has become an outstanding rider and participates, with able-bodied, in the biggest show jumping competitions.
This kind of journey makes me think that vision loss is not the end.
And that there is a light at the end of the tunnel.
You have done research on blind people who have made history, did any of them particularly touch you?
The life of Jacques Lusseyran (1924-1971), who accidentally lost his sight in childhood, is incredible.
He took the lead of a resistance movement at 17, at the Lycée de Louis-le-Grand, in Paris, he recruited the members of his network by ear, to detect a possible hypocrisy in their voice.
He was deported to Buchenwald in January 1944 then, at the Liberation, left to teach French in the United States.
He had a complete destiny, with a very rich love life.
For him, blindness was not a mutilation or a handicap, but an increase in reality and a gift from God!
Is this disease you are suffering from hereditary?
Yes, in about 30% of cases.
Just after my father passed away at the end of 2015, I discovered by chance, upon finding prescriptions, that his blindness was due to glaucoma.
He had Alzheimer's disease and had never told me about it.
My mother neither.
It's a shame, because I could have been diagnosed earlier and therefore benefit from early treatment.
It would have slowed the progression of my glaucoma.
If, to me, this genetic inheritance has been a real rubbish, my only daughter, Oona, who was adopted, will be spared.
It's good news
"I am forbidden to walk at night in the countryside: I kiss the trees involuntarily", laughs Elisabeth Quin.
LP / Philippe de Poulpiquet
Why did you write a book to tell your story?
I did it for all those who make up the unfortunate
brotherhood of curvy people
, to support them and encourage them to speak, in turn, about this little-known disease.
Glaucoma can occur at any age, including birth.
According to Inserm, there are 800,000 patients to be treated in France.
But 400,000 to 500,000 people are believed to be living with it without knowing it, because the disease is asymptomatic.
Only screening can reveal it.
It also counts for the whole of society, because this support is heavy and expensive.
I therefore invite your readers to have their eyesight, and therefore their eye pressure, checked regularly.
How was “The Night Rises” received?
I have received many messages from people who are sick or fearful of being sick, just diagnosed or carrying glaucoma for thirty years.
Funny, moving letters.
The signatures organized in bookstores were particularly rich in emotions.
The participants told me that they found themselves in my testimony, thanked me because my words did them good.
Some brought me charms, miraculous medals of Saint Thérèse of Lisieux, blueberries, which according to a legend were consumed by the pilots of the Royal Air Force to improve their night vision… Others offered me the contact of marabouts or healers.
It was extraordinary inventiveness, fantasy, kindness!
One guy even gave me a handkerchief soaked in a miraculous spring that would have cured his wife's glaucoma.
While the people behind him in the line were getting impatient, he told me that since then the water had been poisoned by phosphate ...
But still, put the cloth on your eyes, it will heal you!
he assured me.
I thanked him, but I didn't use it.
Where is the disease today?
I watch my glaucoma like milk on fire!
Every three months, I do an optic nerve and visual field exam.
There are tiny fluctuations, it deteriorates slightly, but fortunately, the evolution is stopped by the treatment.
Every day, I have the impression that night is falling earlier and dissolving into darkness.
I can walk in the evening if there is sufficient urban lighting, but with caution because the reliefs, the sidewalks are difficult to distinguish.
On the other hand, I am forbidden to walk at night in the countryside: I kiss the trees involuntarily!
During the day, the sun dazzles me more and more, and walking or driving in front of its rays has become impossible.
Another consequence of the disease is that my field of vision is getting narrower and narrower.
But, at the same time, everything is still possible.
Is Your Glaucoma Affecting Your Work?
My team will tell you that I gripe when the light is too bright and when I am tired.
The spotlight on me is also hard to bear.
Another peculiarity for a TV journalist, my texts scroll on my teleprompter in huge characters.
But, on the air, even though I hate looking at myself, it's okay.
I even find that I squint less than Joe Biden ... Between us, I suspect he has glaucoma.
Medicinal cannabis would be recommended for glaucoma, have you tried?
I'm looking for some to relax!
No seriously, I won't smoke: I had a bad trip twenty years ago with hashish.
I almost jumped out of a hotel bathroom window.
But I did read that dronabinol, which contains a synthetic version of THC, the main active substance in cannabis, can relax the optic nerve.
I am not opposed to alternative solutions, provided they complement the treatments recognized by conventional medicine.
I am particularly crazy about organic stores and herbalists.
On weekends, I prepare druid mixtures.
You are a media woman, on the air on a major channel.
Wasn't mentioning your illness risky for your career?
No why ?
Jean-Pierre Pernaut has spoken of his cancer!
I find it difficult to understand this taboo concerning the disease.
I don't see her as a threat.
Testimonials from public figures can even be a remedy for those with the same medical problem.
Some confreres or sisters may prefer to keep the secret to spare relatives.
Me, I am not in this case.
My father is dead, my mother has lost her mind, my daughter knows exactly what I am going through and the man I love is more than supportive.
Obviously, there was a risk of being pitiful and that my management would say that it is time to replace me.
Combining graying hair and sick eyes was a lot for a TV reporter!
It's a joke with my team.
If one day I have an operation and it turns out badly, I would like to wear an eye patch, like a pirate.
That would make a hell of a buzz for the show, wouldn't it?