Me, Stefano and multiple sclerosis: the lightness, the heaviness

Before memories become prehistory, after the summer break of this column I want to retain some images of our little holiday in Rimini, early September. I want to hold it like you hold sand between your fingers. They are leaving, they have already gone, but if I fix them somewhere I can maintain the faith that, in some moment and somewhere, a bit of lightness is still possible.

Stefano and I were tired this summer, less so than the previous one which for various reasons had put us to the test. But still we were tired. Above all the usual search for an affordable holiday (read the post inaccessibility to the square). Rimini is a city that we loved both in summer and in winter, in fact, especially in winter because Rimini is a fantastic historical city and offers many outlets to those who are not necessarily looking for the sea. Finding an accessible and spacious residence for the new needs related to my aids was not difficult.

In short, we returned to the sea and for me this was already beyond my desires, with swimming now lost and the disability continuing. And instead, listen, listen, my husband, in contravention of his idiosyncrasies, even took me to the seaside, not just to go around the city or its surroundings. And here I lived those days to hold like sand between my fingers.

Because I ‘even’ took a couple of baths, glued to the shore and sitting on the job chair, with my husband (…Stefano!) who appreciated the ‘bathtub’ temperature of the Adriatic and for the first time after years he dared to get wet too. “Do you know what? This water doesn’t bother me, in fact if you don’t mind I’m going out to sea“. Imagine if I’m sorry, splash around as much as you want. Anyone who doesn’t know Stefano and his natural idiosyncrasy towards the sea cannot understand the exceptional nature of the event.

And I looked at my husband from afar under the late afternoon sun, he was laughing like a child, he turned to look at me a little amused and a little protective. Blissful, playful, light. I was sitting there floating in the waves with spasticity at full blast but happy. My husband laughs and looks at me while he takes a bath. The sun dries us and burns us. We return away disheveled and lolling like everyone else when returning from the beach. We linger, we have dinner wherever we happen to be, we listen to music, we have one too many toasts. The shawl life, as I call it. The ‘banality of the sea’. The ‘slothiness’ of messing around, of as it comes, of not thinking, of pampering yourself and feeling good. In those moments I looked at Stefano as I had never seen him perhaps in years, I looked at the people around, and I asked myself: how much lightness are we missing?

How come I’m reduced to tears just because I see Stefano splashing happily in the sea and looking at me like a child? What have Stefano and I gotten used to in our daily lives? Calvin’s lightness and the “boulders that weigh on the heart”: how much pain, how much heaviness, how much prison has a couple who live alone and face a serious disability become accustomed to? How ferocious is our routine?

In eight days at sea, despite his enormous effort in managing me for 24 hours – both because I continue to get worse and because he is usually relieved by assistants – miracle of miracles, we never argued. There wasn’t a spat, an argument, a joke or a scathing response (those who believe the caregiver’s romantic narrative either don’t realize it, or don’t want to realize it). We have returned regenerated, if not physically at least in spirit. Obviously it lasted a flutter. You suddenly fall back into routine, into work and healthcare problems, into sleepless nights, into maneuvers, into pain, into complications, into the work that you lose because you can’t be away. And there are arguments and arguments again.

Changing scenery is saving and it is not necessary to move away who knows how far. When the perimeter of your life becomes your apartment, every day and all day, even leaving the house is better: doing it together is a breath of lightness. It can come from any unexpected event, from a lack of afternoon assistance, from an unscheduled plan that you can afford because you are less tired and can make some sacrifices on your routine. It can therefore happen that an afternoon in the historic center at the end of summer becomes a golden trip among foreigners and students, wandering around as if that were not the city you never leave and that you know every single inch of. A porchetta sandwich at the kiosk, a dog to play with, the flocks of birds migrating over the roofs of Piazza Matteotti. A relief, one less brick over your head. Then we go home, hand me my medications, take me to the bathroom, could you wash me?, tomorrow what time is your assistant coming that I have to go out, look at how disgusting they keep our house… And here we are again plunged into heaviness.

Or it could happen that one Sunday afternoon you rebel against the dictatorship of neurological fatigue, you call it, it makes you get out of bed, it imposes your will since “we are at the end of summer and we have almost not enjoyed Pinkie together” (there my new electronics), and you find yourself together under the trees of the city’s largest historic park, which is actually right there near your house, a quarter of an hour away; yet it so rarely happens that we go together! And the breeze arrives to soothe the last sultriness, an old friend with whom to have great conversations, the centuries-old trees, the sunset, the meetings, the social life, the beauty of certain rediscovered corners. Simply: don’t be alone. Alone and forcibly isolated from the rhythms of my body and of the disease. In the evening we return home, and at home we fall back into routine.

Warning: we are not somatizing anything. We know well that living together for a while alleviates daily suffering (to a lesser extent this is the case for everyone). But there is a wall between me and him, it’s called assistance, it’s called alienation, it’s called difficulty in moving forward and navigating between the needs of normality and the management of a complex and progressive pathology.

Living together: don’t survive, don’t assist me, don’t suffer me. Live in it, together.

The sand has already slipped away.

More stories by Vanity Fair that may interest you:

– Stefano and multiple sclerosis: my appeal to Giorgia Meloni

• I Stefano and multiple scelrosis, a parenthesis of beauty
• I Stefano and multiple sclerosis: a signature for us and for you

– Stefano and multiple sclerosis: time for fresh air

–Me, Stefano and multiple sclerosis: we are also something else

-Me, Stefano and multiple sclerosis: violated intimacy

-Me, Stefano and multiple sclerosis: the contagion

-Me, Stefano and multiple sclerosis: it was like feeling free…