Me, Stefano and multiple sclerosis: secretary Schlein, set me free at last

I’ve already taken advantage of this column to address a politician, the other time it was there president Giorgia Meloni on the theme of the caregiver. This is a column of “Rights” that was born following a service on referendum for legal euthanasia. And so, how can we not take advantage of this channel today, to address the new PD secretary Elly Schlein directly?

Secretary, can I say out loud, how nice to hear about civil rights in the foreground again? To hear them reported on the agenda of the major left-wing party and in particular, to hear that the PD you lead wants take up the question of the end of life in a decisive, clear and sharp way? I know, even the last government’s PD attempted a bill on medically assisted suicide. It had several limits, not ‘nuances’ but limits of substance. In any case, it ran aground. Today, listening to her and reading the press reviews, a breath of hope returns.

I am 48 years old. I have been suffering from multiple sclerosis for 27 years. For 7-8 years the disease has evolved from the mild form – which has allowed me to lead a normal life even if with limits – to the progressive form. In recent years, the disease, a neurodegenerative one whose causes and cures are unknown, has progressed at a brisk pace. I’ve been in a wheelchair for several years, but it’s certainly not the last stage of the motor deficit. I am losing the use of my arms and trunk, they are still alive, but very compromised. I was left-handed and haven’t written for years, I’m dictating an article with my voice, I can’t even comb my hair, pick up objects or touch parts of my body. A very severe spasticity complicates my body, which I cannot relieve with antispasmodic drugs because they cause epilepsy, and I am also epileptic.

I have central fatigue (a clinically defined ‘fatigue’) that keeps me bedridden and inactive for many hours each day. For this too I have no cure. I suffer from incontinence, neuropathic pain, paralysis pain, I have constant spasms. I have to be fed at meals, I really mean all meals, including breakfast. I have to be taken to the toilet, lifted, handled, undressed and redressed, seated again, everywhere. Even to change position, I have to be moved by other hands and other arms. My 60 year old husband is my caregiver, for me he loses income, social life and mental health. The state only gives me 14 hours of assistance a week while I need ongoing assistance. The rest of the time, I pay myself a private caregiver who I have to change constantly: I’m more and more dead weight, the lift isn’t good for me for technical reasons and I need ever stronger people, it’s very difficult to find them. this is the ordeal of non-self-sufficiency. Without other people’s hands and arms I literally don’t get out of bed, I don’t relieve myself, I don’t turn around (let alone get up), I don’t eat or drink. If I were left alone by both Stefano and the assistants, let’s imagine a sort of Black Mirrorit is probable that I would die of starvation after a few days in my bed and in my excrement. I’m not exaggerating anything: you can come and meet me in Perugia. He would know a woman who is still lucid, still capable of being useful to someone, still with some desire.

The first, Secretary Schlein, would be to be free to put an end to my suffering. I said “be free to”, not “end now”, because I would like to live a little longer. But live like this, trapped in my body and above all weighing on Stefano, with insufficient assistance, paralyzed in my armchair where I have to ask them to make me drink, to put a book in front of me, to arrange my overalls on my back and to scratch me too, this all day and all the days of my life, in progression then because the disease is progressive, here’s this I don’t know anymore, if it’s life.\

I would like to be free to decide for myself: free to understand up to what point I want to live this life-non-life (there is life everywhere, I know and I stubbornly cling to it!), and when instead I want to finish my journey. I would like to do it in my home, not as an illegal immigrant, not as a criminal.

In the bill presented by the Democratic Party, the right to medically assisted suicide was guaranteed only to those who depended on “life support treatments”, i.e. life-saving machines or therapies. The bill followed the criteria contained in the sentence 242/19 of the Constitutional Court “DJ Fabo-Cappato”. But that sentence was tailored to a specific case, that of Fabiano Antoniani. That right had to be expanded, or discrimination between patients would have been created dependent or not on machinery.

I Secretary Schlein, even with the clinical picture that I have described to you, could never have such freedom: multiple sclerosis does not presuppose dependence on machinery. And so many other serious and irreversible pathologies. The bill even spoke of “life support whose suspension could cause death”: this is not deciding about one’s life, this is simply “unplugging”. Can’t we go beyond pulling the plug, in the parliamentary debate? In addition to this, the bill had a series of limitations and shortcomings, procedures and timing were lacking.

Who does my life belong to? Who can decide what is life and what is no longer? I believe that in the context of a free and conscious decision, only the person can decide. In recent months we have witnessed many civil disobediences by the Luca Coscioni Association for patients who had to emigrate to Switzerland. Thousands of other sick people remain in Italy and in silence, a painful and daily silence that is torture. Serious and irreversible.

I am happy that we are talking about the end of life clearly and clearly. I’m glad that’s your programmatic point. But make me a promise: this time, don’t be shy. Don’t be fearful. Think of the rights of all sick people, without distinction. And don’t look the other way.

Set us free at last, Elly Schlein.

– 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…