Me, Stefano and multiple sclerosis: the deep reasons for a battle

Basically I am someone who would apologize even for existing. Stefano, who tries to cure this tendency with shock therapy, knows it well, “if you apologize, I won’t even answer you”. My past and current assistants know this well, “I’ve been assisting you for two years and you still keep apologizing!”, Cristina tells me, “one more excuse, and I’ll leave you in the lurch here”, Claudia said to me after getting out of the shower, I’m totally helpless, she’s happy to tease me and mess around a bit. My activist friends of the Luca Coscioni Association know this, “now enough with the thanks, Laura” he often tells me Marco Cappatojoking but not so much.

So you can imagine how much it cost me and how much inconvenience it causes me to undertake a legal action against my ASL, which for over 400 days has not completed the request for verification of the conditions and methods envisaged by the Constitutional Court with the Cappato sentence for assisted suicide to be legal. Discomfort also due to physical fatigue. Several times I have been asked by Filomena Gallo who assists me legally if I was convinced, if I wanted to do it. I always answered yes without a doubt. But if I had to listen to my character – which is done very badly, I admit it… – I would stay silent and not disturb anyone.

For this I thank two of my home assistants, who were present on Wednesday at the press conference to present my legal actions. Even Stefano, who has been on the front line with me in this battle for years now and who the same morning he was with Filomena and me at the provincial carabinieri barracks, to file a complaint, with his gaze and his presence he confirmed and reassured me. I will always thank him for this painful awareness. But even more than him – because they weren’t involved – I thank the two assistants, four pairs of eyes in the room listening to me, and it’s like they’ve been reminding me ‘who I am’ the entire time. And not just their eyes but their hands, their arms, their bodies. While I listened to Filomena talk about laws and rights, while Marco talked about our deficient and incomplete politics, they were there to remind me of my body. To remind me of what would have happened immediately after this great clamor of interviews, crews, journalists.

They would take me home, feed me, hold my head by my forehead over the sink to rinse it with icy water, brush my teeth, not without difficulty because giving directions on your mouth isn’t easy; loaded on the toilet taking off my diaper, bent my trunk forward to empty my bladder, put to bed on my side with my legs at 90 degrees, because I can’t stand lying straight anymore; lowered the shutters and made it dim, put a blanket on top, before saying to me “we’re over there, if you need to go back to the bathroom urgently or you piss yourself or you get spasms, call”. Here they were, among old colleagues who were moved, with unknown colleagues who could only show solidarity, with the dozens of WhatsApps, with all that tiring but vital hustle. They were there in silence, as if they were saying to me: “Remember who you are today, Laura. Remember who you are today, and move on.”

Today I am this, even if my mind is still clear, I am this and much more in terms of symptoms, disabilities, ferocious everyday life. They are also my desperate hunger to live, and they too know this well, and Stefano knows it best of all. Today I am this and despite the will to live I need to know I’m free to die when I understand it’s time. Those who interview me can hardly identify with that everyday life and above all in the continuity of that everyday life, being like this 24/7 and above all in constant progression. My carers do it better, who manage my body in every way. For this and for their reality looks at that moment, I will always thank them: I’m heading in the right directiondespite the fears and my character so hurt.

Then come the comments of the many readers, of the many friends on social media. Reading them as a journalist I wonder, in a seriously ill person who wants to be free to die, where is the ‘news’? Because for me and many of them it is a disconcerting banality. “You’re right Laura, I don’t know if I would, but certainly with the disability I have, I would like to have a way out”. I don’t know how many people have written me sentences like this. All these people also helped me and showered me with reality: why is this need so easy to share on a personal and intrapersonal level, but at the same time so difficult to make institutions of any level and politics understand? Why is it so easy for a right, already written in a sentence that has the force of law, to run aground in a thousand rivulets?

But above all: because when we see ourselves denied or not recognized – in Italy the second way is often used, like a rubber wall… – a fundamental right, are we used to bowing our heads and resigning ourselves?

If those who have the voice to do it don’t speak, voice tools and resources: all the others who are in the same condition or worse, but maybe they don’t have the strength to speak, how do they do? Are they silent, in endless torture?

Thanks to all those glimpses of reality, thanks to those who remind me where my body has arrived Today; because there are many distractions, there are many pressures, even keeping up with that everyday life is ‘distracting’. Put yourself in silence, breathe deeply, observe your life. You don’t need to prove that you aren’t depressed or that you value life. You have entered into a just and sacrosanct battle: to have your rights recognized. See them not only “recognized on paper”, but applied. You’re not used to making noise, if it were up to you, would you apologize for even existing? You can no longer transcend this because your body is there, asking you to account. Why There there are already rights in Italy in this field, but apparently they must be demanded by raising their voices.

It is a matter of life rather than death.

– Me Stefano and multiple sclerosis: my appeal to Giorgia Meloni

• Me Stefano and multiple sclerosis, a parenthesis of beauty
• Stefano and multiple sclerosis: a signature for us and for you

– Me Stefano and multiple sclerosis: time for fresh air

–Me, Stefano and multiple sclerosis: we are also something else

-Me, Stefano and multiple sclerosis: privacy violated

-Me, Stefano and multiple sclerosis: the contagion

-Me, Stefano and multiple sclerosis: it was like feeling free…