Me, Stefano and multiple sclerosis: a dream electoral program

Some time ago I wrote a piece entitled Under blackmail, where I described the condition of constant blackmail of a non-self-sufficient person. Today I am talking about a broader aspect and that is “psychological suffering”, which would also be indicated as a requirement – one of the requirements – by the Constitutional Court to be able to access assisted suicide, when deemed intolerable. Psychological suffering is not only that of loss, of mourning, of life passing away piece by piece. But they are also what I call the rape of identity.

After 30 years of illness and disability until total non-self-sufficiency, after that the bar for progression is rising higher and higher, after the pain, the total dependence on other people's hands, on other people's gestures, actions or practices of any kind – welfare and healthcare, not just the hands that operate you – after all this passes a certain limit, it happens that you are no longer the same person. The others in good faith observe you as more or less the same, worse, bruised, but deep down you are still Laura. The one with the beautiful smile, with the clear mind and with the ready joke. The one happy to interact, to converse, to meet, despite the fatigue.

Instead, serious and progressive illness and disability deconstruct. I live in a state of regression, of perennial anxiety, of the habit not of asking but of 'pitying', of expecting less and less and reducing needs to the bare minimum, of denying any meeting or participation, of taking refuge in a comfort zone that safeguards me from pain, from bad accidents, from unexpected events and humiliations of the body that no one would handle. And this ultimately takes away the last glimmer of residual life, of minimal variation on the theme, of freedom to be able to say no, and at the limit every now and then, when it really comes to me, to even screw things up.

I remain alienated in an interminable sequence of gestures, routines, times extended beyond belief, increasing fatigue, increasingly complicated and cruel body urgencies, and above all I am asked – not explicitly, perhaps not even consciously – to respond as before, to be ready and rational, not to collapse, to adapt to every change, to always be on top of things.

From the outside I see a person who, while once she spoke of anxiety about an imminent job or trip or a difficult press conference, about the unknown of motherhood desired and then fled, about natural disagreements with her husband, of everything a woman does in adulthood, today she is happy: because she slept without spasms, because she didn't pee in her diaper for the fifth time a day, because she didn't make the assistant late to be washed; because she managed to follow only one episode of a TV series with a minimum of attention before collapsing into an old woman's sleep; because when you were going out in the park you happened to see two squirrels in the trees, which made you tell Stefano in euphoria about her fantastic walk, 'think what happened to me, I saw two squirrels'. She for not shitting herself. Having managed the night before, while she was being turned over in bed, to grab the headboard with my right hand, wow, I feel like the old days. That she managed to brush her teeth with her right hand almost by herself, and fuck her assistants, fuck her husband and everyone. For having written a decent piece here too, in this column – dictating with the voice – in spite of the neurological fatigue, the hooked fingers on the keyboard, the lectern that makes up for arms that don't raise, the urinary escape that comes suddenly and you have to again wait to get washed and changed. Come on, another half hour wasted.

This is the raped identity. Now the trunk can no longer hold and when I go to the bathroom in the morning the assistant lowers me upside down, my hands touching the floor, while he washes me behind. Please don't hurt me too much there. While I'm like this I glance at her sandal which reveals a tattooed ankle in the latest fashion. But stay calm Laura, stop thanking me for once, right?, the new, new assistant says to me. I would like to tell him that I could be her mother, that the illness has shut down my body but it hasn't made me stoned. But I can't do it for only one reason, and that is the raped identity: I am grateful to this little girl, to the others, and to everyone. Because my life depends on them. It's Stockholm syndrome proper. Imagine, I have to relate not to a person, but to a hyper-tattooed ankle protruding from a trendy sandal while I'm upside down having my ass wiped. This happens at almost 50 years old. It happens while my historical friends are busy with husband, children, work, house, mortgage.

My mind was once occupied by work, married life, family, relationships, politics, holidays, home; today, every morning, the worry is whether the carer will arrive, whether I will have someone to wash me, how the 12 hours will go, how many diapers I will change, whether I will be able to evacuate or need equipment, whether I will be able to have the sun and the wind on my face at least half an hour, time for a walk in the avenue under the house with the electronic wheelchairif the assistant remembers to come and get me – just like you do with children – because I don't hold a cell phone or raise my arm for the intercom. The raped identity means no longer feeling free to choose for centuries.

The raped identity is having a time horizon of a day or a week at most. It's having regressed to a level of survival I never imagined. Once upon a time, already disabled but with an excellent reserve of mental energy, I devoured every type of literature and press, everything I took over settled and became heritage and memory. Today I can no longer even stare at that novel I read over months and only finished last month, because the mental fatigue It makes me like an old woman with no short-term memory. Today I drive around with the assistants and ask, when did they build this stuff in my city? Since when has this road existed? I remember my father when I took him to the cinema several years ago, except that the cinema was a multiplex in a modern neighborhood and he was over 80 years old. Today it is I who does not know but above all, it is I who forgets. I forget everything. Everything worries me and not because I no longer have desires, but because I am simply tired. I can not do it.

When I have a moment to get out of care relationships and I meet up with people who are friends, I throw myself into a flood of words that not even my mother, her goodness, when she meets me those 2 or 3 times a year (but my mother is also over 80, and given the situation has all the extenuating circumstances in the universe). I see my identity violated when I lose the thread of a conversation, when the need to vomit everything out makes me lose the thread, and I was certainly not someone who lost the thread., I was once a journalist, “putting the news in your head” and getting to the point was a skill. Today my speeches, when I can speak or cry freely, start from one point and arrive who knows where, and the unfortunate interlocutor has to lead me back to the point. Or he good-naturedly invites me to talk less, giving me a pat on the shoulder and a pat on the head, as is done to the elderly. The good-natured irony of Stefano and assistants who in good faith think of playing down the drama instead puts the load: perhaps they have created a comical 'little character' about me and talk about me while I'm there with them, in the third person, “Laura is like that anyway you want to do it.” In their minds I should be self-deprecating, amused with myself. Agree with them about how repetitive, anxious, controlling, talkative she has become. I often play the game, of course, I understand the good faith.

Anxiety due to hyper-control, inability to wait, alienation from routine, obsessive repetition of orders that everyone already knows how to carry out – partly because I don't trust, and rightly so – inability to relax, short-lasting attentionignorance of every single corner of the house (I live paralyzed in an armchair, who knows where the utensil is?), struggles even to complete a film or a book, obsessive (and necessarily!) concentration on the body, distance from everything that used to be life: relationships, social rites, attendance at places and events, the activism of recent years.

Identity rape is as if your mind is reduced to a little mouse going around and around madly in a trap. Or a hunted animal in a forest, running with the amygdala in control, the gland of the survival instinct. Today in bed I didn't greet my carer who came in: I immediately shouted, 'be careful, I'm suffering from a urinary infection again, you'll have to change me several times, your urine won't come out of the catheter well and on top of that we're also on the weekend with the doctors untraceable, damn it…'. And right after that, hello, welcome back. Usual accidents, usual routine. The litany of excuses has started again, which everyone around us is so good at neutralizing: but what do you have to apologize for Laura. Enough with all these Thanks and Sorry.

Perhaps the caregivers, assistants, therapists, acquaintances and all the cucuzzaro didn't understand that I'm not apologizing to them.
I'm apologizing to myself, to the free woman I was. Because of how I've been reduced to. For how the disease has eaten up every space.
Of the body yes, but also mental.

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…