I, Stefano and Multiple Sclerosis: Life is out

This morning I went to my historic center. A miracle, lately. My welfare routines have stretched outdated. So tearing the bedroom and my bathroom an hour and a half, literally an hour and a half, It was a test of my grit and my assistant friend, who can no longer see my days and weeks wasted in a toilet. In the center I met in the order: a supporter of mine, an old friend of mine and colleague who asked me Where to sign for the regional law on the end of lifemy palliativist who was amazed to see me in the center and repeated to me, as much as I see you free, how much I see you radiant. And finally My friend bishopmy confidant in freedom of my thoughts on life and death. He was also surprised, he generally sees the house and very heavy. We were happy, we hugged ourselves tight. Our friendship would deserve a film. A bridge between cultures and confessions, or not confessions.

The miracle of a tour in the center

Then I went home. At record times for my urinary incontinence and my obstinacy not to wear diapers. The central hours were those of neurological fatigue, The hand no longer moved in the joystick of the electronic wheelchair. All normal, all usual, all under control. He leaves me the assistant to Stefano, they make me pee, they keep me in two in the bathroom to cover me. Lunch taken by my husband, while he tells me the latest vicissitudes with the volunteers for the collection of signatures. By 14 he knows that he has to bring me to bed without if and without but, in the dark and in silence, like every day. I will stay three hours before being catheterized and moved to the armchair. Yet people today, in that hour and half restored, saw me radiant. Carling: because my historic center was beautiful, the white of Palazzo dei Priori collided with the blue of the clean sky. The sun was mild and the people looked at me greeting and recognized. This afternoon after the raise of this moment and after having dictated this piece with my voice, I will wait for my private assistant, who as soon as he arrives will have to artificially empty the intestine, a hateful and invasive maneuver that I have to endure on alternate days and in fixed times, at that country possible ideas, at that country any afternoon meeting or afternoon activity. I have to settle for, I saw my city demo for that long hour and a half. While Maria empties me and then wash me, Stefano will be in one of the signatures, he will meet many who will greet me, he will have many things to tell me to dinner while again I take me, mounted Bavaglio, before washing my teeth, before placing myself on the sofa, before managing my evening effort that is even more totalizing than that of the afternoon.

Life outside and daily death

To those people there, those people who see me radiant and in fact at that moment I can appear like this or maybe they are really like that: how do I explain to him that that is life out there?

Life outside is beauty, people, things around, participate, sociability, relationships. However, I have to be well rested and therefore I have to catch the right Saturday morning with an hour and a half restart between the toilet and the bed, everything must go smoothly, I have to return in record time for the turn of the assistant turn, I don’t have to do it on me, I have to manage the hot heat and the neurological effort that prevents my hand from moving on the joystick and therefore to go back, I have to get off my car. Because if I listen to fatigue I could fall.

To those people there, I repeat: how do I make him understand that life outside for me is now far away?

As I make to make it clear that the demo of my city is no longer entering a Feltrinelli because I can not afford it for the times, it is no longer to spim in some side street to vary a little on the theme because the effort and the times do not allow me, it is no longer to participate because today it is full of initiatives and I am here fallen in an armchair, waiting for anal irrigation. When I die, as I will make it clear that That Laura that appeared so much radiant because she had managed to snatch an hour and a half of life on daily death?

Free myself from a painful cage

This is the dilemma. This is what I wrote in the last lines on social media, when I announced my choice. Life outside is beautiful, but it no longer does for me. I have to choose to free myself from a painful and tiring everyday cage, and therefore also give up on those beautiful small moments which, however, become increasingly repetitive, because true life is now very distant. When I have rare opportunities to really stay in the middle of people and not an hour accompanied by the assistant and applauded by someone, when I have those occasions And in a sense, I ask me to be Laura itself as always, it is there, that I feel that it is now.

Because I have to stick a smile by force while I feel immense effort. Because my body feels pain and effort. Because I can no longer enjoy things like others. And not even as I myself enjoyed until a few years ago, also with disabilities, also sick but still active. Today I put a smile in my face, I greet as long as I can, sketch speeches as long as I can, But then the effort takes me to me. An hour and a half of the city, memories, demo images, some person and street. All this may seem enough to continue living. It is probably for many. But those who are out, do not know or do not imagine the remaining hours of my day and my night. It does not imagine it because what I feel is too extreme, too extreme fatigue, too alienating and empty and obsessive the routine of 12 hours plus the night. This is the misunderstood: a nice smile on a face that seems radiant and people think Laura He still has a lot to live.

But what I pass behind the scenes is imaginable, many try to understand it, but really understand it, to be inside this body, it can only those who are in my condition, not similar meant me, but the same.

When I look after a showcase your life out there, and I know that I will pay a price for tearing this hour and a half of freedom or semi -freedom, it is precisely there that I understand in peace and serene that it can also be enough.

Other stories of Vanity Fair that may interest you:

– I Stefano and Multiple Sclerosis: my appeal to Giorgia Meloni

• I Stefano and the multiple chosen, a beauty of beauty
• I Stefano and Multiple Sclerosis: a signature for us and for you

– I Stefano and the multiple sclerosis: the hour of air

–I, Stefano and Multiple Sclerosis: we are also more

-I, Stefano and multiple sclerosis: violated intimacy

-I, Stefano and Multiple Sclerosis: the contagion

-I, Stefano and multiple sclerosis: it was so feeling free …

Photo Courtesy of Guido Harari