I've often asked myself what cuts deeper: suffering itself, or the loneliness that comes with it. I've wept many times over that loneliness in pain. My "sweet adventure" began nearly thirty-four years ago, when I arrived in this patriarchal family—parents, two brothers, aunts, grandparents, cousins; later, a sister joined us.
Though my memory fails me, I don't think I ever asked why my brothers and sister lived as they did—a way of life different from mine, yet normal in my eyes. It became "abnormal" the moment I entered school. Over the years, it forced me to discover my own struggles, my own needs, my own gaps. My personal and family reality turned into a problem when others made me feel its weight, when they treated me with pity. Because without knowing it, I carried something enormous: I had two brothers and a sister with severe disabilities, all three in wheelchairs.
I lived in a small village of three thousand people, in open countryside, where everyone knew everyone. So everyone knew me—as the "sister of those three sick children."
I believe that in those circumstances, I felt more keenly what suffering truly meant—or, more precisely, what difference means, what disability means, a word I didn't yet know and that few people used. This psychological suffering was mine alone. My parents had no time; they were consumed by their own reality and didn't notice me. They didn't hear my tears, often stifled so they wouldn't see me cry. They didn't hear my whys, screamed to the wind as I ran through the fields. No one heard.
I have painful memories of school—especially the way teachers treated me differently, the mockery from my classmates, the way I became their scapegoat. In those moments, I longed desperately for a brother or sister who would defend me, who would help. But there was nothing. I couldn't count on anyone. And as in many families like mine—families marked by disability—there was also tension, sometimes fierce, between my parents. Between mine, it was quite pronounced, especially back then.
- Read also: Luciana's Diary - "Precious Lives"
I couldn't express the exhaustion I lived through, the suffering, or rather the ache I felt in certain moments—an ache made heavier by the fact that I had siblings I couldn't rely on. They didn't exist, yet they were there. How many times I turned to them and said: "Why won't you help me? I can't do this alone! Why don't you do something?" They didn't help as I wished they would, but at least they listened—something few people did. And I know their gaze was watchful.
Time passed. My older brother Enzo went to be with the Father. Many things in the family changed; others stayed the same. I've often had to climb mountains to claim something—a place in the world, personal dignity. Mostly, I've broken my nose again and again trying to be who I am, tearing off that label they'd stuck on me: "the sister of..." Not because I reject my reality, but because I have the right to be a person—and to be seen as one, beyond the situation I live in. There were injuries that hurt me, partly because those around me—parents, relatives, teachers, friends my age—didn't see my struggles or my wounds. Only I felt I was immersed in a sick reality that wrapped around me.
Today I can name the different solitudes I've lived in: the loneliness of being a daughter—the only one who protests, who makes herself heard, who demands to be listened to even if she won't be, whose needs are different from her siblings'.
Loneliness in friendships: how hard it is to find friends, and to keep them. Because the time available to me was always so different from theirs. And who's willing to wait, to be patient? And why get close to disability when I'm bound to it anyway?
Loneliness with others: bonding with someone like me, in a situation like this.
Loneliness with relatives: I don't live like my cousins or aunts and uncles. On their side, there's silent acceptance. Everyone lives their own life. I live mine, which is very different from theirs. It's often made of struggles, of injustice, of hardship, of sacrifice—so there's nothing to share.
Loneliness in the parish and civic community: we lived through so much pity—that way of acting that wounds. No one helped us break out of our shell (I speak in the plural because it's a burden my whole family carried). Enzo is gone now; today Giorgio and Cristina are too severely disabled, and if they left the house, it would cause great distress. I've often been judged for what I didn't do, as if the fault were mine alone. Like so many others, we experienced a different kind of relationship to the sacraments—marked by cutting remarks about why we didn't try harder. When I realized the "Christian injustice" of it, I faced it alone. For two years I knocked on different priests' doors to "obtain" Communion for Giorgio and Cristina, and it was made to feel like a "favor" granted to me.
As for the civic community, I'll leave that open to interpretation—it's a touchy subject for everyone. I can say that everything I've faced—victories and humiliations—I've faced alone because my parents let go of the reins and resigned themselves. I'm alone too when I think about their health: first my father's, now especially my mother's, who's letting herself slip away, exhausted by life and pain.
I wanted—and still want—a brother or sister to share, at least in part, all that I carry. When I hear someone arguing with their sibling, I think to myself: "How I wish I could do that too. It's annoying, maybe, but it could be beautiful too."
And yet loneliness in suffering, in disability, has also given me much: it has taught me not to get lost in trivial things, to act without waiting for permission, to believe in and count on who I am and what I can do. It's made me more responsible as a sister, as a daughter, as a woman. It's taught me to be silent and listen even to those who don't speak, not to expect others to act for me, to appreciate hands that open to help me. It's true I've lived great loneliness, but it's also true that without Giorgio and Cristina—disabled—it would have been unbearable. They may be the cause, but for me they've also been the anchor of salvation that allowed me to live it; more than that, they were the means that led me to what is Essential, to Him, the Lord, who lived the cross in loneliness to share in mine too. In the deep gaze of Giorgio, Cristina, and Enzo, in their peace, I met Him who is always present.
And yet it has not been easy, and it isn't today: it always wounds to feel humiliated, to be left in a corner out of pity, to be judged for who you're not or because you've tried to speak for those without a voice. But life is not only this. There is also the grace of a Father who loves us, who fills us with good, and who becomes friend, brother, mother and father in ways only He knows.
- Luciana, (34 years old) - 1996