Me, Stefano and multiple sclerosis: a rock and its cracks

“Greet that rock of your husband for me.” “How is the rock?” Sometimes these phrases sound rhetorical, but to say them to Stefano are usually sincere friends. And I know they are sincere because they are right.

Stefano is, literally, a rock. He was long before he met me. It is for the infinite blows that life has reserved for it. He is for the naturalness, the determination and the energy with which he gets out of every situation. And today more than ever because he lives alongside a woman with a cruel neurodegenerative, who leaves little respite. He is a rock because he adapts to everything, because he speaks little and acts a lot, because what he needs to do, he simply does. Last but not least, he is a rock for his physical strength, and here too I am lucky, even more so now that my disability is advancing and I am often deadweight. He is also a rock morally. His cold blood when I’m desperate on the spot gives me blue blood, leaving no room for tears, but then it comes in handy: to roll up your sleeves when I don’t have the strength, to have less mental blowjobs, to face the sea of problems we have with rationality. A rock indeed, and beautiful granite I would say.

However, even the best rock shows its cracks. In the endless routine of my 24-hour assistance, for example, today another task has been added for him. I started suffering from lymphedema in the lower limbs. Which means that despite all the care, the night – the only moment for me of relief and detachment from reality! – a fire of pain burns my feet. The pain starts, the spasms start, I ask him for help, in addition to the already usual calls to turn around or for a pee break. Non-programmable requests and infinite lifts are required. I call, he runs.

What about his sleep? Also having to work the next day in the midst of this routine? And her back, given that with her 60 years and a few ailments of youth every now and then she gets hit by the witch? And her well-deserved rest? Who explains it to him the next day to collaborators, customers, operators, the people who expect a job done with all the trappings of him? Sometimes I see it fall on me, sorry love it’s my back. Sometimes a strangled scream, sorry love it’s the knee, but it’s not you eh, it’s that old motorcycle accident … Sometimes I see it with black eyes the next day, don’t worry I’ll cook, it doesn’t weigh on me, you know that it distracts me … I have said it several times, if the disease is a prison, the real jailer is me with him.

Fortunately, the moments of salvation arrive, and salvation for us translates into a few, essential words: distance, work outside (and therefore, for him, rest with me!), Assistance, to relieve him of the load. And even the couple, for us, translates into a few but saving words. Habit, irony, complicity.

–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 …