Me, Stefano and multiple sclerosis: the hour of air

In a few days my husband will be leaving for one of his summer business trips. And I will renew a ritual that I never miss on these occasions. In my need of assistance 24 hours a day, Stefano’s trips are scheduled for night, morning, lunch, afternoon and dinner. Then there will be a moment. Just one moment. That moment.

There will be a time in the evening when I will tell the girls to leave me alone, before the night attendant comes. They’ll make me empty my bladder first. They will have washed me already. They’ll place me on the drop-proof sofa. With the panoramic window of the living room open in front of me. Are you all right then, Laura? Will you let me know for anything? Go, go ahead.

And then I will finally be alone. I want to repeat it aloud: alone, alone, alone! No TV series, movies, WhatsApp, social networks. The summer breeze that comes from the window and caresses my legs. I look at the hills in front of me, our view is fantastic. The flickering lights. The train that passes under me, there is a whistle that leaves from afar and arrives from the other side. How many years have I not been on a train? And how much I liked it. I dream of being up there, above that distant whistle, no matter where it goes. It matters that I’m alone.

No one who is not severely disabled and not self-sufficient can imagine what it means to be constantly monitored, touched, assisted, maneuvered. Nobody can imagine how merciless is the forced proximity, not choice. There is no choice for Stefano in having to assist, feed, wash, position, help, even scratch, every moment that passes. There is no choice for me in having to ask, insist, apologize, call, wait, wait, discuss, think that I would like to be elsewhere, all in a few square meters of the house, all day and every day. Caregiving is an unselected effort and forced companionship.

Both Stefano and I are lucid and aware of this. The difference is that even with all the worries of the case he can get up, go out, do things. Not me. Paralyzed in an armchair. Can you turn me around? Can you make me switch positions? Will you change my window? My legs hurt, I can’t touch them, can you ease the pain? Of course, between us there is feeling, complicity, that solidity of the couple that comes from sharing a great pain. But can you imagine what a trickle, for both of us?

That’s why every Ste away trip we greet you as a mental health shower. He will have beautiful nights without having to get up all the time, as well as detox from me. I’ll have to have continuous wheel attendants, but at least in that couple of hours there, those evenings when I feel better, I can be left alone … Ah, how wonderful! It’s me again. I’m the one again I was. I hear the train whistle from afar, and I’m off somewhere too.

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

-I, Stefano and multiple sclerosis: violated intimacy

-I, Stefano and multiple sclerosis: contagion

-I, Stefano and multiple sclerosis: it was like this to feel free …