Me, Stefano and multiple sclerosis: why cannot be understood from suffering?

I recently embarked on a mobilization, first as a collective personal title, for assistance. At first I had remained without personal assistant. Then I saw myself at risk of losing state financial support for this assistance. As if to say, a good couple of winter months who put me to the test. My appeals and announcements on social networks have bounced everywhere And I have to say, the solidarity of the territory has expressed itself at all levels. This makes me grateful and happy also because I raised a nice fuss not only for me but for all people who live similar conditions.

However, the exploitation also arrived soonas now happens when I make some declaration (cross and delight of being a known person. They are on the other hand mechanisms well known to me, having made a certain type of profession). Some groups of conservative area in Umbria have published phrases such as: “This is the Laura we like, the one that fights for life, and it is right to help her, not the one that fights for (…)” State Death “and for assisted suicide”. I promptly replied that My battles are all in one direction, that of personal freedom. That cannot exist if you are trapped a body or if you do not enjoy the right assistance.

Beyond the exploitation, this episode led me to reflect again on the theme of the end of life. I put myself in the shoes of those who use terms such as “death death”. It wasn’t even a dystopian movie or an episode of Black Mirror, To understand each other. I realized that those who write such a thing must believe it genuinely (this is the problem). Just as there are genuinely those who speak of “slippery slope”, “death as a solution to problems” or other amenities of the genre. They write it convinced (this is the problem). So I would like to try to turn directly to them with my heart in hand. Beyond the political differences and religious belief.

When you use the phrase “State Death”, think specifically for the act. You focus a lot, I would say exclusively, on that act, that gesture that appears so divisive – at least for you – you cannot be neutral, you feel called into question, and I repeat that I can understand it, perhaps you also feel frightened. Indeed without the perhaps. But, and this is a question that I would like to definitively ask to those who oppose. Why do you focus only on the gesture? A person chooses the end of life (a seriously sick person). Have you ever thought about what that person can lead to that gesture What do you consider so wrong and dangerous for society?

I mean: let’s admit for a moment you are in reason. All the people who have chosen the end of life so far have made a mistake, therefore. But have you ever set yourself in the condition to understand who that gesture, so wrong and in any case definitive for you, comes to do it? Have you ever set yourself in the condition to ask you: “But if one comes to a long time, what is it that has brought it to so much?”.

My current everyday life has changed from what you see in the photos, on social networks, even a few months ago, or a year ago (I take my situation for example). Today my life is really reduced to a daily life in which every gesture is extremely tiring and painful. Today my life is a succession of days all the same, of all hours the same because I live now for now and I feel them all, and they are very slow, believe me, since I have woken up catheterized raised by force taken in a washed and dressed bathroom, until the scene repeats itself in the evening but at the met. In the middle there are no longer the relationships of the past.

There are no longer the projects and activities of any person who can be called normal (bad term, but we understood ourselves). He is no longer going on vacation, doing a job, greeting friends, going to a concert, leaving the house (yes, I became more tiring to me more tiring apart from few morning therapies). I can no longer enjoy the beauty of life, which remains beautiful despite its injustices and atrocities. I can’t read an electronic book anymore because I have to have someone who moves my fingers and hands for me. I can no longer see a movie even at home. My day is a very slow succession, very slow maneuvers, physical and emotional pain, people with my hands on mepeople with my hands inside my bowels, biological functions, time that does not flow in the middle of an increasingly engulfing neurological effort, smiles that I can stick to myself when I happen to stay in front of the computer and see my friends activists or send a WhatsApp to an old friend, or be together with Stefano while he and only he is at dinner with old friends (because only he will say? For a short time I mean an hour).

I repeat that my days are all an always identical succession, indeed more and more fierce of gestures, forced maneuvers, requests and expensive expectations, watch straight in front of me while I have to decide how I open the mobile phone or my old e-book or feel a podcast, this in the only two active hours of the day, after the central fatigue disposed of in bed and the cars of the evening. This daily life is affected by a disease that always goes on, and there is no palliative care that holdsgentlemen, please do not pull out the question of palliative care, you would have given a palliative care to DJ Fabo or Welby?, there are cases on which palliative care, even very important and precious, cannot do anything. From month to month this disease is progressing and there are no hopes or rehabilitative prospects, but not from now on, for three or four years at least.

So gentlemen: I reformulate my question. I still remain clinging to life. But did you ask yourself how would you live in my place on my time? Do not be a mental picture with me as you see me in articles or TV services. That is a snapshot, also sweetened. Make a mental game of imagination and try to go down in everyday life for now a person in these conditions. Now for now, day by day and progression. I repeat, friends of the people of the family. Now for now, day by day and night per night, and in constant progression.

Are you sure that I am asking the death of state? Are you so sure that in my place or of many other people would you not only like to be free to choose? Are you so sure that a person who arrives at a certain choice is asking that the “state death” be introduced? Make this mental game. If you succeed. Make this mental game game. Why who criticize the end of life cannot identify themselves with people’s suffering? We put politics for a moment. Let’s put divisions and ideologies aside. Why who criticize freedom of choice are obsessively focused only on “that final gesture”, without trying to understand people’s suffering first? You think seriously, look in the mirror and ask it, Do you seriously think that certain conditions are manageable with palliative care only? Look in the mirror and ask me without making fun of yourself. Thank you for what you will be able to understand.

At least tackled the question, not only for me but for those who live like me?

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 …