The fucking world in between

Yesterday I went to the doctor to proceed with the request for access to the protected categories. I showed her the result of the neurocognitive evaluation I did with the psychologist. It went quite well.

In fact, I’m very good at pretending everything is going very well. I’m good at adopting strategies, especially visual ones. The psychologist told me that I’m very good at playing with images to compensate for the abilities I’ve lost.

For example, if I have to remember numbers, I do it through a mental keypad. If I have to remember sequences of words, I tell them to myself as a slideshow story. If I have to reconstruct a series of images she showed me, I manage to combine logic and my own imagination, completely disconnected from what she showed me.

Basically, even during the test, I found a way to survive. And in the end, when it comes to a test, it actually works quite well.

But then I leave the room and I struggle to get to the car. And with the car to get home. So it’s a bit paradoxical. The test says it went well. But I don’t have an autonomous life. And my problems impact every area of my life: personal, family, work. There’s this ongoing paradox between the test that goes well and the daily life that doesn’t go well at all.

I wonder whether it matters more that the test went well or if life matters. And then, what’s the point of the test?

The doctor, perhaps realizing that as it is it probably won’t be enough to access the protected categories, asked me what the next exams would be. One of the next is the MRI between September and October.

She didn’t have the foresight to think that asking me when the next MRI will be, to decide whether to make the request now or in a few months, was a bad question.

Because the MRI is not an exam with nuances. It’s a test with only two possible outcomes: either it goes well or it goes badly. If it goes badly, it means I have the tumor again and I need surgery. If it goes well, it means life continues, with all the difficulties I already know: leaving the house, working.

It’s a choice between one thing and the other.

The good thing is that I’m inclined to think positively. It comes naturally to me. I don’t tend to think negatively. I have a deep feeling that there are many possibilities, many fortunes, and that I can rely on those. I have many things that excite me, that I do.

It’s been more than two years now that I’ve been immersed in a strange situation: I can’t get back to having steady rhythms and I can’t define myself. I don’t exactly know what I am.

Even with a certain irony, I feel stupidly lucky.

We are in a phase where everything revolves around artificial intelligence. It’s a huge, fascinating topic. A world to explore, to experiment in. As an artist, as a creative, having new tools is always exciting. It would be terrible to think of having to go on forever with only brushes and torn paper. It’s nice that throughout life there are new tools with which you can do things, create worlds, tell the world.

But there’s also great fear. The fear of no longer knowing what you are.

In my case, though, it’s a fear I already know. The opportunity that the tumor gave me, and the fact that I received no pity from the company I worked for, is that I’m not waiting for the execution. It has already happened. It happened two and a half years ago. I’ve been living beyond execution for two and a half years now.

Sometimes I define myself as a dead man who has survived himself. A sort of ghost who walks through an existence beyond death. Like in movies: those ghosts who survive themselves and remain stuck in a world that is no longer that of the living, but not yet that of the dead either. A world in between. The world of those who have to fulfill one last great task before they can go. But I don’t even know if I have one.

Without being able to say it to those who know you, who love you, who are close to you. Because you end up making them feel bad. So everything’s fine. 

What did you do today? I can't say exactly. Also because due to my problems, I don’t remember.

So you live. Which, in the end, I don’t even mind. I like my life. I do many things that I enjoy, even if they’re now far from everything. Far from what I was, from what I thought I would become.

There’s so much emptiness. So much silence. And in this emptiness, in these spaces, I do things that amuse me. I tell things that it would be nice not to know how to tell, but which I instead know how to tell very well. Because they are in every single letter of this fucking text.