Nicolas Gloor suffers from Charcot's disease. Nevertheless, he agreed to meet us at his home in Renens (VD) to tell us his story. Despite his ordeal, the 27-year-old is still committed to helping others, whether in Switzerland or abroad, and to make the most of what life has to offer. Here's his story.
Nicolas Gloor was born in Carrouge in the canton of Vaud. He went to school in the area of Moudon and completed secondary school in Payerne. He then obtained a bachelor's degree in social work, after which he became a qualified social education worker. After that, he worked for a year and a half with young children and was then forced to stop working when he developed the illness.
Groupe Mutuel: Nicolas, tell us about yourself. What has motivated you and what motivates you? What do you love and what makes you happy?
Nicolas Gloor: My answer is very simple. What I love in life is being with the people I love. I have never had any specific hobbies. To have a drink with the people I love, to go bowling, that’s what makes me happy. I also love helping others, which is probably why I wanted to be an education worker. Before I fell ill, I was planning to set up an association to help children in Senegal and West Africa who are victims of violence and trafficking. I went to Senegal as part of my studies and worked in a reception centre. I saw what was happening there. The association still exists, but it's on stand-by because of my situation. It's called Yakaar, which means “hope” in the Wolof language. I've always wanted to fight injustice. It’s everywhere, but can sometimes be alleviated by taking action.
Your illness is unfair...
Yes, and I see it as such, but I can't do anything about it, the cause is physiological. However, you can have an influence on social injustice and change things. That's what drives me. Of course, at my own modest level, since I'm just one human being among millions.
Are you a believer?
Yes, I believe in God. I'm convinced that there's something after death, so it's also easier to accept my condition.
When you're alone at home, or when you wake up in the middle of the night, where do your thoughts lead you?
There were several stages. At first, I didn't really realise what was happening to me. And I don't know if you ever realise that you're closer to the end than the beginning... It was a bit of a denial phase. And then there was a phase where it dawned upon me that I didn’t realise I was going to progressively lose my autonomy. At the beginning I was walking normally, but a few weeks later, I had a rollator and now the wheelchair. I used to say to myself: "Nicolas, you don't realise what's going to happen and it's going to be difficult". The end result of the disease is that you will no longer be able to breathe because your lung muscles will stop functioning. I don't think I've realised that yet...
Then there was a more difficult phase, the one I'm in now, where I can't do things on my own, where I need help with taking a shower, cooking, cleaning and shopping, emptying my dishwasher, everything. And I don't like to have to rely so much on people's help. As a result, my relationships with other people are no longer symmetrical, but asymmetrical. It's hard to accept but I'm doing it little by little because I have no other choice.
Nicolas Gloor's testimonial on video (in French only)
If I say music, what do you say?
I love listening to music but I'm incapable of playing it. I like a lot of styles, French variety, some rap music, etc. What's important to me in music is the lyrics and the words. I also listen to praise and Christian music, which soothes me.
What about reading or books?
I love to read, but I often don't have enough time to do so. But I love going on holiday, being at the beach and reading. I like sociological and societal books, which question the world and things, but also science fiction novels, where I embark on imaginary worlds.
And if I say film or series?
I spend a lot of time in front of the screen now that I'm not working. I watch films and series to help me stop thinking. I really like the Marvel universe, or series like Grey's Anatomy, fantasy, dramas and the occasional comedy.
Are there any people, close or not so close, who have been examples in your life?
I'd say my mum, the love she gave me, the way she brought me up. My father too, of course, but in a different way. It was my mum who created the person I am, the values that she and my father passed on to me, including the importance of thinking of one another. And I'd also say my best friend, with whom I've shared a lot. This is an exceptional relationship, Elisa is very close to me, she’s my soul mate.
Do you have a saying, a phrase or a personal memory, when it comes to overcoming a challenge or getting through a difficult period?
Not really. I do think about God though, to tell myself that I'm not alone. I know God is there, but I sometimes wonder why God is letting me go through things like this. From time to time I also feel a little angry. But in the end, I say to myself that maybe things are happening this way for a reason. Maybe if I'm ill, it's because I'm able to cope. Of course, in an ideal world I wouldn't have been ill, but as we all know, the ideal world doesn't exist...