Lucas

This is my very first post on this brand new blog.

You see "Lucas" in the title... and you wonder who he is? And why? Why? How? It all comes down to the same questions when I'm on the train on Friday 20 September 2019 and I'm chatting to a passenger and I say, "Tomorrow I'm going up Mont St Victoire!

- Oh yes! Do you do that a lot? Why do you do that?

- Oula.... it's a long story.

- Oh, that point?

- Yes ... it's linked to Lucas.

So we're back to the questions we asked at the beginning: Who is he? Who? Why? Why? How?

I wanted to tell you the story, not Lucas' story, but my story in relation to Lucas. And in the end it will be a piece of his story too. So sit back, dear reader, and enjoy a cup of tea... you won't read this in 2 minutes. Are you ready?

It all began in the summer of 2013. I subscribed to pages on Facebook that talked about organ donation. Why do you ask? Because my dad came home one day with the post from the letterbox and said to my mum, "Darling! I've got my organ donor card... I'm telling you now, so if anything happens to me, just know that I'm for it".

My mum in the kitchen was more like that 😳 LOL but that's another story.

I must have been 16-17 years old and it caught my attention. I looked up on the internet what this "organ donation" thing was and I discovered that you can take your organs after you die to give them to someone who needs them so that they can live better, or even... so that they can live at all! But this is brilliant stuff! We're dead, who gives a fuck about our organs? Of course we donate them! That's what I said to myself when I was 17. The subject has always interested me. I think science in this area is fantastic!

So we come back to the summer of 2013. Now I'm 28, with a settled life, a flat, friends, family and a job. Everything's going well, you might say! But I was feeling in a state of permanent negativity. What does that mean? Well, it starts with waking up in the morning, it's grey outside and you're sulking... Yeah! That's where it starts. Then you don't realise what's going well in your life, you just see the bad stuff.

That's where I was at when one evening, sitting on the carpet in the living room of my flat, my nose on the computer, I came across an organ donation page that said "check out this page about Lucasss San, a 12-year-old waiting for a transplant". I clicked!

I discovered a young teenager who at the time wasn't 12, but 14. He was suffering from a disease called cystic fibrosis. At the time, I didn't know what it was. I just know that it's the same thing that killed Gregory Lemarchal, a singer I admired musically .... that's all.

Then I keep reading his page and then, suddenly, I understand that he's BEEN transplanted 😀 He got new lungs in December 2012! I don't know why, but there, all alone like an idiot in my living room sitting on the floor, I was happy! Happy for him. And I can still hear myself saying this sentence out loud "ah fuck that's great he had this chance that Gregory Lemarchal didn't have.... ! ". Then I keep reading these different posts, and I see this one that will stay with me for the rest of my life: "Today I cycled with my brothers and I'm happy because I'm not out of breath.

.... Then something happens. Something I can't explain. A feeling that comes from deep inside you, a little voice that talks to you and says "Can you put your life into perspective a bit instead of always complaining?", "Is it that bad when you get up in the morning and it's grey?

That day, my negativity hit me in the face. That vicious circle where you think everything's going wrong but it's you who's creating your own shit and you don't know how to see and smile at the good things in your life. I see it, I become aware of it, I understand it and everything becomes clearer. The next morning, everything will be different.

So I'm going to keep following this page until December 2013. Regularly, until I was admitted to hospital. I understand that it's usual for mucosa sufferers to go to hospital for treatment. I still don't understand the disease, I understand that the transplant doesn't change anything, just that he breathes better.

But I'm not worried, and that's what he writes on his page.

There are symbols, little details that I need to talk about here. Lucas published photos, some of him wearing a Superman S T-shirt. A T-shirt he really liked, his mum told me later. It struck me as I've been a huge Superman fan ever since I was a little girl (remember Lois and Clark, the new adventures of Superman on M6 on Tuesday nights in 1995?)

I also see him with a cuddly toy in his arms. Disney's red Stitch. In fact, I'd see this Stitch at Disney and my little nephew Alexandre would choose him. I remember saying to him, "Oh, you've chosen Lucas's cuddly toy". That's how I'd tell my sister-in-law Edwige about Lucas and his whole story. But otherwise, I hadn't told many people about Lucas. Not even my parents. This detail is important for the rest of the story. Let's continue ....

It's now 23 December 2013. I'm at my grandmother's with my parents. We're preparing Christmas at her house this year. My brother, my sister-in-law and their children arrive the next day. The Christmas atmosphere, the decorations outside, the lights, the tree, the joy of being together as a family. I love this time of year! I remember exactly where I was that day. I'm sitting in my grandfather's armchair (he left in 2005 to join the stars), my parents are chatting on the sofa next to me with my grandmother. I'm there, calm, I pick up my phone and I open Facebook, which I hadn't opened for 48 hours. I scroll down the news feed as we all do, sometimes looking without looking ...., and then I see a post by Lucasss San.

"Lucas' funeral will take place this Friday. Please don't buy flowers, if you want to spend money give it to the associations fighting cystic fibrosis. Everyone should come with a coloured scarf".

I'm frozen in my grandfather's armchair....I shout "NO! NO! .... ba NO!" The tears come but don't flow. There wasn't time. Because my panicked grandmother and parents go "What? What's wrong? BA said!

Lucas is dead....

My father: Who is he?

He is a boy I used to follow on Facebook who was ill.

My grandmother: And he's dead? But how old was he?

Yes, yesterday! I didn't see! .... He was 15.

My grandmother: Oh that's sad.

And then they'll pick up where she left off. I'm sitting there in my grandfather's armchair, holding the phone like an idiot. The tears won't flow, there's no time, we're off to say hello to auntie and uncle! OK...

From there, a series of events .... incredible, paranormal, in short... I'll let you, the reader, be the judge of that. I have my opinion on the matter. You'll have yours. And the main thing is that we respect each other. Don't you agree?

The next day is 24 December, Christmas Eve. My brother arrives with his family as planned. I open the door. Alex, aged 7, is carrying his red Stitch in his arms. I can still see it! Alex says, "How are you, Auntie?" and "Yes, yes... that's Lucas's cuddly toy...". It's the only time in my life I've ever seen my nephew with that cuddly toy in his arms!

Edwige comes in and says "Oh yes, Lucas! How is he?

"He died yesterday".

So much for the Christmas Eve atmosphere! LOL Yes, we're going to start LOLing. Because Lucas is always LOLing. The meetings will be LOLs. And the climbs up Sainte Victoire will be fucking LOLs. So reader, I hope you're smiling? Hey, don't pout! LOL

That evening, we'll be eating oysters and discussing what Lucas could possibly eat on Christmas Eve in paradise. Edwige will say to me, "You'll have to explain to Tiffanie (my niece) what cystic fibrosis is because she really likes listening to Gregory Lemarchal and I can't explain it to her, but you'll know.

Well, no... I didn't know and I realised it that evening. As for the rest of Christmas Eve, I can assure you that we had a lot of fun and a great family Christmas!

January 2014.

I'm back from the festive season. I sit down at home and type MUCOVISCIDOSIS into Wikipedia. Finally! And I understand better:

"Cystic fibrosis is a genetic disease affecting the glandular epithelia of many organs...... It is linked to mutations in the CFTR gene on chromosome 7, resulting in damage to the CFTR protein..... Its dysfunction causes an increase in the viscosity of mucus and its accumulation in the respiratory and digestive tracts".

And then along comes Leeloo. Who's Leeloo? Well, it's me.

"Your name's not Céline? LOL Wait, wait, reader. Let me explain!

Leeloo is my artist name on YouTube. I play guitar. I sing. I love it and I share it on YouTube. That's all there is to it.

So in January, I took a blank page and tried to write a song to pay tribute to Lucas... But I can't do it. Nothing came out (normal! I'd never experienced anything!) Before you can write a song, you have to experience it.

One day, in the car, I heard a song by Christophe Maé. "Charly".

"Hey Charly, what's it like back home? It's been really sad here since we've been laughing without you".

... I think straight away: that's Lucas's song!

I go home, find the guitar chords, play it and make a video on my channel.

That video was going to set off an incredible butterfly effect! His mother, Stéphanie, got in touch with me. She shares the video on Lucas's page... I'm touched, but at the same time I'm thinking "what the hell am I doing on his page! It's not my face I want on there, it's his! And yes, I wouldn't take it all that well at the time. Because the truth is that the YouTube channel took off at that point and "thanks to"/"because of" a dead child.... And that's not easy for my little brain to deal with. Today I accept it. That's just the way it is. That's just the way it is. That's why I say that Lucas is bound to Leeloo for life.

Are you still there, reader? You're probably thinking .... but what's that got to do with his Montagne Sainte Victoire...

Wait .....!! LOL I'm getting there! I told you to make yourself a cup of tea!

Lucas was cremated and his ashes scattered at the top of La Croix de Provence, at the very top of Mont Sainte Victoire at an altitude of 900m. He climbed the mountain with his father Fred when he was 8 years old. Fred explains, "He coughed, but he made it to the top!

Since then, every year in September, his family and friends have climbed the mountain to pay tribute to him and to remember this fucking disease that is cystic fibrosis. It's the Lucas Attitude!

In September 2014, as fate would have it (or chance, as some might say), I was on holiday and the walk fell right on my weekend off. I'm off! Steph will tell me "we'll pick you up at the station and you'll sleep at Fred's house at ....".

My friends: "But you're crazy! You can't just go off and sleep at their place! You don't know these people! It's dangerous!

Me: "No... it's fine... I have a good feeling about it". LOL

Dear reader, I'm going to teach you something: chance doesn't exist! Patricia Darré, a writer I really like (and whom I discovered in the same years), said that "the universe is far too intelligent to have created chance". (And Patricia Darré, we'll have a chance to talk about her at length in another article one day!)

So I set off by train to Marseille in September 2014. I was welcomed with open arms by Stephanie. Lucas's mum. I meet Lucas's brothers Stanislas (aka Stan!) and Briac (aka Briac! LOL) (and they're doing very well, they don't have the disease because I know reader you're going to ask the question... lol)

I meet Louise. A young girl who got to know Lucas through his page, just like me. The rest is her story. Which will be linked to Leeloo too... (guitarist, music... my desire to take singing lessons...)

Fred, Lucas' dad. Valérie (Fred's partner today) and her children. Régine and Mamie Yvette, Lucas's grandmothers.... and then friends, cousins, brothers of the grandmother's father but that's too much .... We'll stop there. Oh no, I can't forget Fred de la Corniche.

"What's his name?" .... Too long to explain! That's his story. LOL

I'm going to meet Lucas that weekend. Yes, it sounds strange to say it, but that's really the feeling I had. I saw Lucas in Fred's eyes (the father, not from the ledge!) Try to keep up! Have some more tea, reader!

It was festive! Very festive! I was welcomed into a wonderful family, Marseillaise to the core (that means a lot!!), adorable, kind and full of humour!

The next day, we get up and go climb a mountain! Well, I admit I didn't really realise it. A mountain.... a small one or a big one? I had no idea! LOL Do I climb mountains in my life? No! And I can see that:

Shit!!! The little thing up there is La Croix de Provence? Ah yes... it's .... up....loin. LOL

And we start climbing. After 10 minutes, my legs on fire, my heart out of breath, I say to myself "what the fuck am I doing here.... I don't even know this damn kid.... oh he's a pain in the ass!" LOL

Louise and I have a nice chat as we climb the mountain. Just as I'm talking about Lucas, a butterfly lands on me. I smile. Lucas is there. I can feel it, I know it. It's hard to put all these sensations and synchronicities into words. But he is here. With us. I meet him gently. I go up.

And then it becomes a challenge! Louise climbs faster, we split up and I find myself alone (everyone goes at their own pace on the mountain, often moving away from each other), I climb, like a snail, but I climb. You think to yourself that he had cystic fibrosis and he did it, so you... well, you're going to make it, even if you end up on your knees, you'll finish this walk! Your lungs are working perfectly! And then comes the mental part. Getting to the end. Getting to the end of things. Climbing. Basically, going to the end of yourself.

I reach the top (after 3 hours!). There's a refuge that used to be a building for monks. Then a chapel. The Chapelle Sainte Victoire.

This chapel.... My God, I love it! It's calling me! I go inside. Exhausted, I sit down on a wooden bench there, I look at the statue of St Victoire, the tears are flowing.... well.... it's flowing all by itself. I don't cry... it just flows. All those tears I couldn't get out on 23 December, all the fucking negativity that has (and sometimes still does) ruin my life... it's all coming out. I just say thank you to Lucas. And there he is. He's right there.

After it all sank in... OK, after I cried my eyes out! Stop taking the piss, reader! LOL When I come out of this chapel, it's like when you left your iPhone charged all night, Battery 100%! Fully charged! Well, it's the same. I came out with a sick banana! Crazy, isn't it?

And I'll spare you the details of the discussions on the bench with Stan, who talks about his brother...., but that's his story.

We climb, AGAIN! to La Croix. Lucas is there too. He's there all right. Everyone meditates in their own way. Then Louise and I sing the Acapella song by "Lucas" (Charly de Maé). It's the first time Leeloo has sung in front of people other than her mother and father.

After that, Leeloo will take singing lessons and Leeloo will perform on stage.... (thanks Lucas)

When I get back from this first walk, I'll fill in my blank page with a song called 'Le S de superman'.

Here you go, reader! We've come to the end of this adventure. Do you know something? This adventure is monstrous! There's so much more to say, so much more to tell. The heroes' race in Paris every year. The crazy times I've had with Stephanie, what we've been through. But I can't tell it all, because once again, that would be her story. But I think she could write here. Anything she wants. I invite her to do so. Her blog alone would be 1000 pages long! LOL

We've met people I haven't mentioned here because they don't belong in this beautiful story I'm trying to write. They're either people I don't understand, or simply ... suffering from mythomania. It's heavy stuff... you don't expect this kind of encounter and it destroys you for a while. I remember that famous evening of 23 December, my grandmother gave me a chocolate wrapper. You know, in the paper, there's always a quote to read, you know? Well, I opened the paper and read this quote from Confucius (and it was Lucas who was already coming to meet me)

"The important thing is not to never fall. The important thing is to know how to get back up each time".

So I get up again. Every time. With time. All the way.

I'd love to tell you about every synchronicity I've experienced in connection with Lucas. But I can't. A synchronicity is personal. It grabs you by the gut. You have a ball of energy in your stomach, in your heart. You understand the meaning, but the person right next to you won't be able to understand, and you mustn't hold that against them.

I'd just like to say that since then I've been linked to the 23rd. Lucas left on the 22nd but I'm linked to that date, the 23rd. To that number. Every 23rd of the month has brought me some crazy events in the months and even years that followed.

I'm linked to the S in Superman. I come across Superman's S's at very specific moments in my life. I talked to Steph about it for a long time, until one day she was at a specific point in her life too. But that's her story. She too would have synchronicities to tell!

So here we are, every year since 2014 we've been climbing the St Victoire. Two days ago, we climbed it in the wind and descended it in the rain. Soaked to the bone, afraid of slipping, the wind whipping my face and I thought "why the fuck am I here! I don't know this kid! Shit!" LOL

Oh yeah! We're having a laugh, I swear! Every year, this click on this Facebook page takes me on one hell of an adventure! But today, all these people are my friends. And I'm happy to have them in my life.

Lucas, "it's time to let you go", I know you're busy on the other side. I know you're protecting your own. I know you're having fun! And I'd like to say to you today, 5 years later, thank you for coming to meet me. See you at the crossroads of the stars...

To you, the reader, thank you for reading. Have you finished your tea? I love writing and I want to share lots of things about life with you. Life is full of surprises and adventures.

And now I'll let you have your say. Perhaps you too have had to deal with Muco? You or someone close to you? Waiting for a transplant? Have you had a transplant?

Have you climbed to the top of the Sté Victoire? What do you think of this place? Did you know Lucas?

I'd like this blog to be a place for sharing. Exchanges! So go ahead, it's your turn to write. Share your story with us. Make yourself a cup of tea.... lol take the time. Tell me about it! Tell us!

Whoever you are behind your screen... you're welcome. Can't wait to read you!

Finally, a few photos:

Fred, Louise, Briac et moi

Avec Fred le papa

Lucas

Steph, Fred et moi

Avec Stan