Both born with the incurable disease of cystic fibrosis, 35-year-old Nicolas and Damien Delmer are desperately sick. With the life they have left, they're working for the right to die the way they want.
AMELIE-LES-BAINS — When they talk about their childhood, Nicolas and Damien Delmer prefer to recall only the happiest memories. The mornings when they would snuggle up in their pajamas against each other and watch cartoons — it was the Dragon Ball Z and City Hunter era — or the endless hours spent in their bedroom building huge Lego spaceships.
Then there were the epic birthday parties, where as many as 60 kids would be running around every corner of their house in the French Oise region near Paris. They celebrated two birthdays in one, the convenient joy of being twins: Nicolas and Damien. Damien and Nicolas. The inseparable, the entwined.
Of this childhood where everything was double, Nicolas and Damien only want to keep the pleasant and not the bitter. The twins suffer from cystic fibrosis. "In the playground in grade school, a boy once told me I wouldn't live past 30 years old," Damien says. "It wasn't mean. He was simply repeating what people said at that time about our illness."
As for Nicolas, he remembers seeing his mother in tears on the phone, explaining that the doctor had said "they would be lucky if they even reached 17."
"We put life first"
Death is unthinkable when you're a child. Even more unthinkable, inconceivable, is the death of a child. But Nicolas and Damien witnessed it. Etched in their memories are the gaunt features of a little girl they used to see in the waiting room at the respiratory physiotherapist's. She too suffered from cystic fibrosis, but her case was more serious. She dragged her oxygen tank around, had trouble speaking and breathing had become a struggle for her. One day, she stopped coming.
There's also the the figure of a fellow patient, a teenager Nicolas saw being carried away on a stretcher. His bed was empty the following day, like a dreadful void.
"But we chose to put life first," Damien says. "I couldn't, I wouldn't believe them when they said we were going to die."
When they were teenagers, the illness got worse for Damien and Nicolas — especially for Damien, whose condition worsened from "moderately affected" to "seriously affected." This means his lungs were eaten away by the illness, with one infection after the other and a deficient digestive system.
A life controlled by medical care
The twins are now 35. Nicolas can still stand, even though he feels more and more exhausted by everyday efforts. Sport, his passion, has become more complicated. He used to practice kickboxing and running, anything to prove to himself that he could tame this body that wanted to dominate him. But Damien is now often confined to bed. The pain leaves him worn out, too exhausted to even read or play the piano.
In their home in Amélie-les-Bains, one hour away from Perpignan, in the south of France, their existence is now controlled by medical care. "We've always lived together," Damien says. "We can't imagine having separate lives." A nurse comes to replace the catheter in Damien's arm — a permanent "hole," so he can receive his antibiotics.
But sometimes, when he's feeling a bit better, Damien asks Nicolas to join him and watch a cartoon in bed, like when they were kids. "Last time, we watched Rio," Nicolas says. "But he was too tired to watch it all the way through." Says Damien, "It's strange because he knows exactly what I feel, which no one else can feel, because he has this illness too."
They don't need words to understand each other. "One morning, I wasn't well at all," Nicolas recalls. "But I was too hazy to call Damien, so, in my head, I shouted "Damien, Damien" to make him come. He knocked on my door. He was sure he heard me call him."
They may be inseparable, but they weren't together when we met them. Nicolas had traveled to Paris for the release of their book, Frères jusqu'au dernier souffle(Brothers Until the Last Breath). It's a poignant testimony and a plea for legalizing euthanasia. They both talk about the book as if it were their child, their eyes lighting up with pride. "It unites us even more. We twins are a bit like couples. We know each other so well."
We talked to Damien as he had just been admitted at the Montpellier University Hospital, two hours away from their home. Despite getting mixed up in all the tubes and cords, he wears the same smile as the kid with the chubby cheeks in family photos. "He's lost so much weight," worries Nicolas, whose cheeks are even hollower than his twin's. "It breaks my heart when I see the photos of us when we were children. Damien was chubby."
Nicolas, who suffers the least from cystic fibrosis, is probably the one who's the most afraid. He's anxious. Not regarding his own illness, the coughing that keeps him awake all night, his pain — but regarding Damien's illness. "Dragging this illness is hard," he says. "Seeing it in another person like looking at a mirror, in the person you love the most in the world, it's torture."
Damien now weighs just 37 kilos (81 pounds). In his hospital room, he calmly opens a Tupperware and tries in vain to nibble at a cookie. ""Eat, eat." I've heard that my whole life," he jokes. "He doesn't qualify for a lung transplant because he's too thin," says his Nicolas. "It's very hard for him to gain weight."
"A comforting fate"
The brothers often talk about death. They think about it. They've always thought about it. They made a pact: The one who stands last helps the other leave, in peace.
Once, when they were teenagers, Nicolas had to go to the hospital in Paris. Damien still remembers the cold fear that engulfed him at the thought of losing his brother. Today, Nicolas is the one having trouble finding words to describe the unspeakable.
"I don't know how I'd get by," he says. "There are so many things I can't imagine without him. Even a simple birthday: It's not my birthday, but ours. That day, without him, would be like celebrating half a life."
Their book contains this beautiful sentence: "We walk together towards a certain death and this fate comforts us and terrifies us at the same time. The only mystery is not how death will step in, but who will leave first."
The freedom to say stop
Damien also found a certain form of serenity in campaigning for the ADMD, the Association for the Right to Die in Dignity. "Meeting other people in their last phases, talking about death, very simply has appeased me," he says. "I've become more and more of an activist, and I've done conferences in front of nursing staffs. That has also liberated me. I used to accept that others decide for me. My body was subjected to the medical system. Now I want to be able to decide what's good for me."
Today, his fight is clear. He wants to have the freedom to say "stop" when it hurts too much. He wants to choose his death. "I've been through nights of atrocious suffering, with shivers that are like electric shocks in the body," Damien says. "I've also had this horrible feeling that I was dying because I was suffocating: There's nothing worse. I don't want to live that again. Death doesn't scare me, but that they let me go through this, it terrifies me."
Damien has met with end-of-life care units. "But morphine is contraindicated for me," he says. "I'd suffocate. They can't offer me anything to ease my pain. We talked about Switzerland with Nicolas. But it's very expensive. We each receive 900 euros in benefits for disabled adults, but it barely covers basic living costs. And I'm in no condition to make such a trip anymore."
And what about the euthanasia law reforms submitted by French parliament members that suggest offering a deep and continuous terminal sedation?
"I'm tired of people telling me what's best for me," Damien says. "They've imposed it on me my whole life. Maybe I want to die while I'm still conscious. Among my own. With my brother’s eyes on me."