"Being surrounded by so many people made me uneasy, but..."; "If you're going through what I'm going through, have the courage to name your suffering..."; "A neighbor didn't hesitate to tell me I smelled bad; I've always tried to keep everything spotless. How many nights I cried alone over that insult...".
In Assisi
I went to Assisi in a cautious state of mind, as always—rather cold toward Fede e Luce.
I suggested to my husband that we go on our own, and he agreed immediately. We drove there in our car. Assisi, as a medieval city, struck me deeply. I fell in love with it at once and made use of every free moment from the pilgrimage schedule to explore it as much as I could.
Being surrounded by so many people did make me uncomfortable. Yet every gathering I attended left me satisfied. I met Cardinal Martini—a man of immense spirituality and learning—who gave a talk for all of us, parents of handicapped children.
Jean Vanier, founder of Fede e Luce and the Arche communities, is a remarkable man. He speaks with such simplicity, as if telling a fairy tale. He preaches the Gospel of Christ with a spontaneity and conviction that fascinated me—yet also left me perplexed. Perplexed, because I ask myself so many questions. I'm troubled by doubt and fear. Meanwhile, he speaks of Jesus with a certainty, without a shadow of hesitation, with joy and peace.
The liturgies all moved me deeply—perhaps because of my emotional nature—but on the second-to-last day, something extraordinary happened, something I never expected.
I had taken a seat in the front pews of the church for the Mass that Father Enrico from the Naples community would celebrate. At one point, they helped a tetraplegic young man sit down next to me. I felt an immediate twinge of discomfort, but forcing myself to be humble, I decided to smile at him and speak. I asked his name, where he was from, how old he was. With great difficulty, he told me his name was Martino, he was 25, and he came from Parma. I told him about my son Walter.
The Mass began. At the Gloria, I stood and helped Martino to his feet. His body was awkward; his legs wouldn't straighten. He placed his hands on the pew in front of us. His right hand was so rigid with spasticity that only his wrist touched the bench, his palm turned upward. Without thinking, I took that hand and began to shape it gently, stroking it to ease the tension, to help it relax. And then something indescribable happened to me.
I felt a boundless love for Martino. He and my son Walter could have been the same person. Tears poured down my face, unstoppable. A voice inside told me, "Martino doesn't need your tears." But I wasn't crying out of pity. His gaze touched the depths of my heart, and I felt such love for him—it astonished me, and at the same time, it calmed me. We sat down, and somehow I found myself embracing Martino, my head on his chest, feeling so right there that I didn't want to let go (...)
Lina Guarnieri
And I Am Content
I read your magazine carefully every time it arrives at the ANFFAS office in Brescia, and I find the articles very interesting—especially since I'm the mother of a mongoloid daughter.
You say rightly that current thinking must transform into solidarity, friendship, and understanding for those less fortunate than us. I thank God that I feel deep love for mentally disabled children, and I've transformed that love into service toward them. I've worked at the ANFFAS in Brescia for twenty years. For nine years I've directed the women's workshops, which include sixty girls in various activities: ceramics, embroidery, sewing, knitting, handicrafts, and weaving. I gladly offer my volunteer work after forty years of teaching. I'm content with this work because I'm fulfilled by so much affection and gratitude.
Maria Salerno
Name Your Suffering
Will you have the courage to publish this letter? I don't know. And perhaps I'm not sure it's right to say what I'm about to say.
I've always believed in human compassion in a general sense, without boundaries. I refused to think that one suffering couldn't understand another. I didn't understand widows' groups or associations for various illnesses—and perhaps I was wrong.
I've spoken and do speak with people who have cancer. In all of them I've felt the loneliness that comes from not being able to speak openly with those around them about their illness (with rare exceptions)—about what their future might have been, even if short. And so, simply because I was like them, we could spend hours talking, without drama, without self-pity, but calmly, about what we felt and how perhaps we were a bit... uncomfortable to be around. Others felt forced to "play along" with us, pretending to know and not know at once.
One of my closest friends, right after my diagnosis, told me honestly: "I don't know how to treat you." Then I understood: I was no longer "me," a person, but my cancer and then me. We must learn not to build walls, not to kill people before their time—people who know they must die and who need honesty, even if that honesty brings them pain.
I've been blessed: I found people without cancer who understood, for whom I'm not "the cancer patient" but the person I've always been, going through a difficult period like many others.
I write this so that whoever walks this path and feels what I feel will have courage to name their suffering, and in doing so find courage to fight, to heal, and to encourage those around them to speak the same way. Then they'll find the strength not to have to flee the room to cry, because either we don't cry, or we cry together.
Anonymous
Illness and suffering are mysteries before which we must be discreet and gentle, knowing that how we live pain is entirely personal and passes through different stages before awareness and acceptance come.
"Human compassion" means, then, trying to understand what those who suffer need and want, and receiving them with respect for their journey. There are no rules.
(the editors)
How Many Nights I Cried Alone
I'm late in replying to your much-welcome letter, given my health and that of my deaf-mute daughter. But on January 10th, it was twelve years since she collapsed at work. She was rushed to the civic hospital in Brescia. They thought it was her heart, then exhaustion. Four times in psychiatric care, but nothing helped. She got worse every day. Finally they found severe cerebral palsy from birth, which has left her completely bedridden. She'll be thirty-one soon. I'm writing by flashlight because it's four in the morning. She's fallen asleep in her barred bed now. I'm waiting for a wheelchair, but everything takes so long. In 1976 I applied for a caregiver allowance that wasn't approved until June 1985. When will I get it?
I'm also a widow for eight years and I live with another son who is deaf-mute and can't speak because at two years old he had encephalitis. He'll be twenty-six soon and he's not quite normal. I'm ill myself—heart trouble, thrombophlebitis, deforming arthritis—and I spend night and day living this hard life. I moved here because I'm close to two sisters and a brother and many nieces and nephews who help me during the day. At night we're alone. How many sleepless nights. How many insults I've received, how much humiliation for these afflictions. I should be talking with you face to face, but it's impossible for now. She's awake again, I can't continue.
A neighbor in Brescia didn't hesitate to tell me I smelled bad. I've always tried to keep everything spotless. How many nights I cried alone over that insult. I've endured so many accusations and contempt, alone, abandoned in the fog and darkness of Brescia. Here it's mountains at least—I can see the peaks and talk to them. I have one normal son, married for eight years with two beautiful normal daughters, but he lives twenty kilometers away. He visits sometimes, but he has his own family and they're all normal. They don't understand the pain of a sick mother-in-law, a widow with two afflictions...
M.C.
I Discovered Ombre e Luci
I'm a young man of twenty-six, a volunteer for more than five years in work with the handicapped.
A few days ago, visiting a boy I've had the good fortune to mentor (and to guide toward my ideals), I discovered your magazine and was enthusiastically impressed!
With these few lines I'm asking if you can send me this year's issues and share the joy and sacrifice of reading your experiences (I have one of my own—a brother, forty-two, with intellectual disability). (...).
Angelo D'Amico
Good Idea
I received the Assisi issue of Ombre e Luci. It's beautifully done, and it was a good idea to reprint what was said in the meetings with the Cardinal and with Jean Vanier. Now each of us can read them again from time to time so we don't forget. If it were possible to receive a few extra copies to share with parents and friends who couldn't attend...
Giovanna Bonzi
It Deserves It
I'm happy to send you these addresses because your magazine truly deserves to be known and appreciated.
I have a handicapped child too, and as a good Christian, I can say my judgment is more than positive.
A Suggestion
My name is Giovanna and I'm writing from a town in the province of Varese. I want to tell you that I really like this magazine because it truly invites us to reflect, to think, to change our attitude—which is so often resistant toward people with handicaps. I'm also writing to make a request. I do volunteer work at centers for the handicapped, and I may soon begin working at one of them. It would be wonderful if there were articles explaining the various types of handicap, their characteristics, their differences—so we could broaden our understanding in this field and better comprehend the various disabilities we see but can't always distinguish.
This is a suggestion, and I hope you'll consider it!
Giovanna