Me, Stefano and multiple sclerosis: an Italy full of many little MacGyver

Actually the nickname “MacGyver” for my husband is not my lot. It was his colleague and friend Davide who renamed him as the hero of the cult TV show of the 80s, given that, for every technical difficulty that the two encounter in their video production work, Stefano pulls out, just like the protagonist of the series, an unexpected and brilliant solution. Who would have thought that this skill would also have served him in assisting a disabled wife! Today we are at the point that the technicians of the AIDS centers or the physiotherapists of the clinics – people in official contexts – call him MacGyver without even laughing at us. Because it’s not a joke.

Stefano has not only assisted me over the years. He adapted every context to me. If a bathroom has to be adapted, he places me sitting there, he looks at where my arm instinctively runs, and there, nowhere else, he forces us to build a handle. He studies my body, immediate reactions and weak points, and there he flips a switch. He studies (as a technician) lights, position of the aids, bed or chair, and adapts everything so that I can take, look, operate. Doesn’t the adapted shower satisfy you? He puts a light pole on it and makes it – safely – a support that turns everything. Can’t I get up on my own anymore? Home automation lights, home automation music, home automation blinds. Does the terrace have a step and is it not accessible? Think waterproof wooden raised floors. In the mountains, the electric drive of the wheelchair can’t make it up through the broken paths? As a former motorcyclist, he figured out how to rebalance the weight of the thruster forward so I don’t slip back. Can’t hold my morning cup of coffee anymore? What’s the problem, take a silicone straw, because the plastic one would melt and the metal one would burn me, and off to the “coffee spritz”. Does the electric bed have bulky and useless wooden sides? He empties it all and leaves the wrought iron core – he covers it where I might hit – “so you can hang on to move and turn around”. Do I do TV interviews? He creates me a live station from the chair. Going over all his tricks is impossible. Always safe (his background benefits him); more and more as the disability progresses.

And since this column isn’t just about my husband… I know a lot of MacGyver around. They are the family caregivers of people with severe or very serious disabilities. Accustomed every day to doing desperately on their own to deal with every new situation, and there are always new ones: not foreseen by the protocols, by welfare, by health care, by the nomenclators of aids … New for that single, unique person and therefore, unheard .

Not everyone will have Stefano’s ability, but I assure you that Italy is full of many little MacGyver. Only they are not famous, in fact they are invisible

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

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