Me, Stefano and multiple sclerosis: May 1st is not my holiday

It doesn’t have a national contract, it’s not even legally recognized, it’s nothing short of a physically, mentally and economically strenuous job. Nevertheless there is no day to remember the family caregiver, no May Day concerts, no line of press releases from politicians and in this case, alas, not even from trade unions. Wanting to take a tour among my caregiver friends, the surprising thing is that I didn’t have any need to look for them or bring them to mind. It was enough for me to open the latest WhatsApp chats. And I have left away many, many others.

Thinking about who to hear, it immediately came to my mind Irene, Lele’s mother, severe brain injury from birth. “How was your May Day, Irene?”. “Without an elevator and without a company to repair it”. She always brings out her beautiful verve from her Irene, one of her who really makes her battles. For example, the one on assistance: Lele has only four hours a week. “I don’t work, for this reason they gave me few”, here is the nineteenth-century culture of the ‘angel of the hearth’ which masks a much more current reality, the ever-increasing lack of funds for non-self-sufficiency. Irene’s novelty is that even those four hours have disappeared, because Lele will soon be entering a day care centre. I wonder, couldn’t they have kept them for him in the meantime? But so be it.

On the other hand, the Bini spouses and their son Nicola with the same problem are partially saved from the day care center. AND Will be, my assistant and her sister, who tells me about a narrowly held balance. “Thank goodness the day care center because already like this we are three caregivers, no longer a whole family… Once we were also in voluntary work together, we did many activities in the Red Cross, always together with others. Today I feel like saying that we are hardly a family. On call, in alternating shifts. And they, more and more tired”. Sara struggles to keep her voice steady as she tells me. Getting naked for these people is a great act of trust, and I thank them for that.

Also Christina she tells me what it means to be a caring parent, in this case of a child with a rare disease. You need to know the universe of rare diseases, know who lives there, to understand the ordeal of not having treatments, protocols, guidelines. To see her, her little girl Alba is stupendous and she would have nothing that deviates from the norm. On the other hand, knowing how mom and dad live, with a multifactorial, multiorgan, unpredictable and ruthless disease – every day a roll of the dice, to be monitored minute by minute – you understand why Cristina can’t work or even live, already taking a shower from alone is a miracle, carries on all the work of her husband, and a family network in alternating phases.

Soniawho follows his sick elderly mother, confesses “I miss myself a lot… No celebrations for us who don’t exist, indeed only a few tears, which I hide from my mother by turning around and pretending to look for something”, “in my youth I was an activist and of course I was celebrating May Day… Today I’m ‘under house arrest’ with my mother and I don’t want to talk about May Day because it hurts, I only do it because it’s you”, he says.

How bad to read you, friends. How much anger and loneliness even in the words of Barbara, who also appreciates my attempt; “but Laura doesn’t care about these things anyway, except for those who experience the same problem as you” she tells me, telling of the past with her mother who has disappeared today, and of the present with her blind father. Is it possible that there is such disregard for a problem that involves half the country, if not more? It’s possible that there wasn’t a word at the big concert in Piazza San Giovanni? Of course, official work is increasingly precarious, and it is certain that anniversaries like this are sacrosanct. But the fact that in the midst of so many different stories there is no one who mentions who takes care of a sick family member, full-time and without any protection, makes me feel bitter.

Today he prefers to talk about something else Elizabeth, friend and caregiver sister of Eleonora, with very serious multiple sclerosis. Elisabetta has been a companion in many battles but now she prefers to talk to me about everyday life, assistance, principals and her future with Roberto. I have never met a more mobilized caregiver than Elisabetta. I once knew her to feel guilty about even leaving the house: today I feel different, despite the worsening of Eleonora and her single mother. Perhaps because I’ve known her for years and we share the same disease, Elisabetta is the only ‘sip of fresh water’ in the midst of so many bitter pills.

How is it instead Claudius, Simona’s partner, also with very serious MS. With him I have no consolations: in Claudio’s words and in his story I find Stefano, and it hurts so much.

“For years I’ve wanted to abandon myself to a restful sleep, which isn’t intermittent” – he tells me – “I miss a deep sleep so much, more than an evening with friends, but you can’t. Who would take care of you?”. No May Day, because “mine isn’t a job: it’s a mission. Otherwise you couldn’t explain the physical tiredness, the emotional stress due to fear and loneliness, the despondency and anxiety… All that remains is the irony to anesthetize the pain, but there is little to laugh about, and certainly May Day is not my holiday”.

Unions, politics: how do we put it?.

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