In fact, there are three potential ones I could attend at the end of August. One closer to my mom's place that also appears to celebrate Wallis and Futuna. One close to Bordeaux, in the Arcachon area, and a third one close to Nantes. Depending on whether I'm still here by the end of August, I could attend either of the three.
Every time it's much further than the one I was planning to go to, about 200 to 300km, but... hey. Hopoe can't be in two places at the same time, and she certainly wouldn't travel this far. I noticed that the events she attended don't go further than about a hundred kilometers from here, so that's way past her radius.
That said, I'm evaluating the costs. Is it better to go by train, or by car? Can I reach it easily, or do I need to drive? I can't rent cars yet as I'm still a learner. How much would accomodation be? And festival food is costly AF, almost a goddamn steal. That said, Polynesian food... eh, that's nostalgic stuff. My jam. Home food. But still, I take this into account. That one I went to in May was costly on its own. And I'm also thinking of getting stuff like other earrings, and pareus!
***
But not just that, I'm thinking of doing something I've been meaning to do for... close to twenty years now. Namely: go back to Châteauroux, where I lived as a child for a time, and go to the grave of a friend of mine, Lori. Not her actual name, though it sounds close.
Lori was the daughter of a biker couple who lived in the same residence as my parents and I. She was my age, only a few months older, and she suffered from an extremely rare childhood disease called infantile neuroaxonal dystrophy, also called Seitelberger's. This shit's a bitch. Exceedingly rare, one out of a million, and yet both of her parents carried that damn gene. They had the same father but not the same mother. Lori had a sister during her last months of life, and in a cruel twist of fate, said sister turned out to have the same condition years later. I don't think synchronicity can be any more cruel than that. They even asked if the mothers were related because the damn thing is just so. exceedingly. rare.
At birth, there is no apparent sign that something is wrong, and in infancy, everything seems to be alright. But anywhere between six months to eighteen months old, developmental delays start to appear. Eventually, the child's muscles first weaken, then stiffen and they become entirely paralyzed. Feeding, breathing, those things become something to be supported because the child cannot do it on their own anymore. Some have seizures. Their cognitive functions also deteriorate, some go blind, deaf, or both. The brain just deteriorates otherwise. It's a long, drawn-out decline at an age where it shouldn't happen. Life expectancy is about ten years. Lori lived just past her ninth birthday. Her sister lived for fourteen years. There was an attempt to fundraise to have her undergo a life-saving operation in a Chicago hospital, but it was so bloody expensive that the goal was never reached.
Lori couldn't breathe on her own. Rather, she needed oxygen. I don't remember but I think she was probably fed through a stomach tube. I just know that it was so... impressive. It nearly shocked eight-year-old me the first time. The second, I could talk to her for a bit, but what annoyed the fuck out of me was that every time, there were adults in the room, so I had no privacy at all.
She could not talk, only blink, once to say yes, twice to say no. Every now and then, alarms would sound, and her parents had to aspirate mucus out of her airway. What I regret however is not giving in to my curiosity: I always wanted to get into that room and talk to her more, and look at all of this... medical stuff. Because yeah... Lori's case triggered a lifelong medical fascination for me, though I guess ER did it first when I was even younger. But after Lori, I was secretly researching all of this while my parents weren't watching, and was absolutely terrified they'd find out about my secret obsession.
We went to her funeral when she passed the next summer. Then, we had moved to Paris. I had never been to a funeral before, and I guess I was kind of innocent, bringing my LPS and my camera.
It was one of those big park-like cemeteries that have flowers and vegetation everywhere. You could walk in here for hours. I think it was the early afternoon, I don't remember very well.
The white coffin, the funeral guys' words, and the song that played, and that I still love to this day. Only Time by Enya.
For the year after I had it in my mind but obviously did not ask for the title, because... perhaps I had the sense this wasn't very appropriate. I was the type to bring my camera to take pictures and play with my LPS, but at the same time, I was not daring to ask for the funeral song's title. Maturity? I don't know. But I found it much later on a YouTube video and I knew I had heard it somewhere.
It was that song, indeed.
That day, the day of Lori's funeral, I swore to myself that I would come back there when I'd grow up. When I'd be so grown-up that nobody could ask me where I'm going, or drive me there. I could have asked for my parents to bring me back there, but everything about Lori was something I kept deep inside myself. I don't know if it's because of that taboo curiosity... or because of something else... but even as we could not talk much like children do, and I could only see her twice, she's still a friend in my mind.
Lori died in 2008. We're in August of 2026. And I might be about to make that journey. For years I was too far away: now, I'm about a couple hours away.
If I go, I'll also pay a visit to the sister.
I don't know yet what I'm gonna do... but that could be the opportunity.
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