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Louis waits in his room, settled in his black wheelchair, back and head very straight. He hardly moves, yet he embodies the exact opposite of inertia. Louis lives, and lives fully.
Growing up with disability
You'd think life had been rough on him, or even disinherited him. At the age of two and a half, he was diagnosed with Duchenne muscular dystrophy. This progressive genetic disease affects the muscles, which become progressively weaker and then paralyzed. As he grew older, Louis lost the use of his arms, then his legs. His respiratory capacity also diminished: the young man is placed on respiratory assistance at night and will soon be during the day. "It's difficult, but when you have something to live for, you move on," he says with a smile.
Is illness an injustice? He replies:
No. It's a test. In our lives, we all suffer at some point: we just have to give another dimension to that suffering. Faith is what makes that possible. Faith means remembering the mystery of the Incarnation: I firmly believe that Christ came to share my suffering. He doesn't shrink from it; he comes close to it. This helps us understand that God doesn't want suffering; he fights it. And more than that, he comes to join us in it.
Inalienable dignity
And what about his dignity? Does he feel that it has been damaged, diminished, or cut off? "It's today's society that wants to sell off our dignity," he replies in a voice tinged with anger and indignation. "As if suffering took away dignity! It's a huge mistake to think that human dignity can be lost: We have dignity because we are human. Dignity is inalienable. What we need to do is fight against loneliness and exclusion; that's what kills people.”
We have to make ourselves available to God's grace: a little like a stained-glass window, we are called to let his Light shine through.
In his life as a disabled man, he has had to deal with the way other people see him, which is marked more by fear than malice. "Differences remind us of our own fragility, and that scares us, so we try to run away from it. The younger we are, the more violent it is: It's easier to make fun of others.”
Louis is not alone when it comes to coping with his disability. His great strength is his family, whom he cherishes very much. “I don't live with my disability alone," he says. “I bear it with many others. It's a great grace.”
Learning from grief
However, life hasn’t allowed him the privilege of still having his beloved family together. On May 2, 2021, his mother, Aurélie, died suddenly after a fall from a horse. Louis began by asking for his mother to be saved, then accepting God's will. He describes the experience:
This ordeal is an earthquake. Losing your mother is especially painful. I was lucky enough to have a prayerful family. So automatically, to keep my head above water and not sink, I prayed. It doesn't take away the pain. But that's what Christian hope is all about: understanding that life is only a passage. Our city is in heaven. I'm already living it with my disability, but my mother's death has made me more aware of eternal life: heaven has been torn open. Even if, humanly speaking, everything was on shaky ground, there was this image of Christ the Rock, stronger than anything else."
Disability as strength
Today, he says, his disability may well be his greatest strength:
I can bear witness through it that you can live despite suffering, and show that Christ lives in me. That's how I think the Lord is calling me to be a missionary, with this wheelchair. To do this, we have to make ourselves available to God's grace: a bit like a stained-glass window, we're called to let his Light shine through. It's a daily act of conversion: of saying yes to God every morning, and of readjusting everything that is not ordered towards Him.
For the goal remains the same: "We have to understand that we were made for eternal life. Everything is ephemeral, we're just passing through. Everything here below is designed to teach us to love. We must live this earthly life as a preparation for the great encounter with God.”
