Me, Stefano and multiple sclerosis: Christmas for people like us

If it is true that the holidays are a source of stress or melancholy for many, for me they are quite the opposite. More and more today with the disease progressing, holidays for me are the beneficial rituals, the red threads of existence, the continuity that in any case and in spite of everything makes me say, ‘I am Still I’. I see my assistants – my window to the world – going crazy in neurotic traffic, I read memes on social media, “once again this year we took Christmas away from the Zebedee“. I was like that once too! But today, for me, spending whole days out and in company is already a ‘change of scenery’.

Sociality and ritual are also good for our couple. We spent our Christmas days divided between the two families and, it’s news, we spent them unscathed and even happy. All things considered, my parents are aging well, I’m in love with my nephew who is now a twenty-year-old rocker, our great-grandchildren are absolutely beautiful. Food, opulence, hugs, packages, hearth, bingo. A normal bath.

But then that distance, that subtle distance from “normal” lives, I feel more and more space. And I think Stefano feels it too. It’s Christmas for people like us.

I have to skip the assisted shower in the evening, for dinner: do you do it for me or do we call some black assistant? Because these days you know that nobody can be found, they are all missing… Don’t worry, I’ll do it for you, my back is broken but I’ll do it for you. You have to put me in a diaper though, all those hours I can’t help but get it on, get organized when you pick me up, I know it’s tiring, sorry… Can you stay in that position all the time, straight? How do you manage with fatigue, shall we try and at least go home? But no, you’ll see that if you put on that ear defender and make me lie down on one side, I’ll have less weakness than usual. It’s late, it’s two in the morning, don’t tell me that I have to move your legs anyway… Then I have spasms Stefano, if you don’t do it… Tonight it weighs on me physically, I break, sorry, it’s not your fault, right now the private assistant must have been ill… If you want, I won’t wash… Come on, leave it alone, I’ll take a painkiller and even shower we’ll take her home. Good morning, best wishes, no, let’s do it ourselves, there is no maneuver where you can help us, don’t worry, sorry, I’ll sit next to Laura so if she gets tired, I can take her, stay comfortable or I have to position you differently, sorry, it’s early but it’s already tired, yes the fatigue comes to her like this, like a switch, indeed today it has already lasted a long time, sorry let’s leave early and then we have the whole routine at home, it’s not easy for us to go to bed! So thank you, best wishes.

This is that thin but dizzying distance. I observe her more, Stefano observes her more, while the others, in good faith but illusory, see me as the same person because of my illness they see “only the wheelchair“. The bath of normality is good for us, indeed very well, we really should force ourselves and give ourselves more opportunities to get out of our routine. How good it is to feel normal next to the normal (forgive me this word, which many do not like but we understood each other ). AND maintaining the rituals, the red threads of existence, despite the effort it entails, is an anchor of identity. It is also with those distances that increasingly, bypassing recurrences and rituals over the years, we cannot help but observe and – where possible – throw ourselves behind us. Seventy-seven, women’s legs.

(Photo credits: Luca Coscioni Association)

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