Four Stories
Those who have had a child with behavioral disturbances, who have shared their life with a psychotic boy, they know. Those who have not lived through this cannot know. Nothing can replace lived experience. With that understood, Ombre e Luci offers these four accounts, told by the people who lived them, without decoration or stylistic flourish. With a little emotional engagement and a little imagination, one can read what reality lies beneath these plain and ordinary words and phrases. We believe this is the necessary starting point for the journey through the problems surrounding and within childhood psychosis that this issue of Ombre e Luci proposes.
Writing a book about my life has always been an idea of mine, but I lack the educational background to do it properly. So I will limit myself to setting down a few thoughts on this worn-out notebook: perhaps it will help me lighten the burden that weighs so heavily on my tormented soul.
I have been struck by the greatest sorrow a creature on earth can know: a child handicapped in body and mind—one of those children where you don't know where to begin to treat him, to help him, to educate him so as to improve his life and that of my entire family.
Every specialist doctor who sees him starts from scratch, so for eighteen years I have had to begin everything anew, trying new medications and new methods. I have followed every stage of his gravest illness, step by step, tirelessly, from three months after his birth until now, when R. is eighteen. I have just turned forty-seven, and I believe I have given him these years of my youth with sacrifice, but with so much, so much love.
Today my children celebrated me. I received gifts from them: an elegant necklace from G., earrings from M., a large bottle of "Desirée," my favorite perfume, from a Jesuit, a family friend who visits us every Saturday and has for five years. Then I received another French perfume from N., and genuine leather shoes, handcrafted, from my husband.
No one thought to put something in R.'s hands to bring to me as the others had done. He was hurt—I could see it—and this caused the crises tonight and the next day. Finally I thought to have him buy a cake with candles for me. He loves it because it reminds him of his own birthday. It seems that calmed him down.
How hard it is to understand him! You have to keep your mind working constantly, and woe if you make a mistake. My God, help me. Give me always the strength to start again. Often I have no strength at all. I would like to rest, but that is the moment when people expect something of me—who knows what! He wants to be helped. He wants to be understood. I think this is the worst illness that can come; it is not a physical disease—worse. It is something that rises inside him and he does not know how to express it, so he says one thing when he really means another. How often he falls into crisis!
Then the whole house becomes a battlefield. I myself am a storm of feelings—anger, despair, rebellion, and love.
A kind word eases the burden.
This morning I took R. to the CIM to ask if they had organized the summer stays yet and if they would enroll him. They sent me to the UTR, saying they were better organized. The woman who once worked at S. Maria della Pietà and has known R. for five years, seeing him again said she found him much improved since then. She complimented me on the steadfastness—mine and the family's—that we had shown in caring for R. More than medicine, it was our love that has pulled him out of the crises that might have destroyed him psychologically. Her words did my heart good. They made me understand that someone grasps the effort of my work, that nothing in life is wasted. But the road is still long and hard, and we are all tired—especially me. How much longer can I hold it all together?
This morning I enrolled him in a summer stay organized by the Health Authority. It's not certain they will take him—or maybe they will, with the help of one of the family. Perhaps me, or M., if she feels up to it.
It has always been hard for R. to get into any public program. He has always been turned away, even when he was very small.
I started when he was three, taking him to a center at... but they didn't want him because he wasn't cooperative and wasn't suited for that type of school. After that we traveled the length and breadth of Italy. They said it was better to start rehabilitation early to get better results. My husband got it into his head to find a professor who could treat him well and requested a transfer to Rome, where they had given him the name of..., who was supposed to be the best at these things. There was a months-long wait to see him. We only got him examined through a friend's connection, and afterward they gave us another appointment six months out. We paid thirty thousand lire, which in 1972 was a considerable sum. I didn't understand much from that first visit. He prescribed Gardenal, swimming, a stationary bicycle, and taking him out to do the shopping.
I went to Rome to please my husband, but I would have stayed at... gladly, because I had friendships there that had stood by me even in my darkest moments.
In Rome I found Scuola Serena, where they took R. even though it was not the right school for him. I never understood what the right school would be for him.
Not the regular schools, because he caused problems. Not the special schools either, because those created problems for him. My God, what anguish! I feel I have a son who is different even among the different.
After seven years at Scuola Serena, R. refused to go. I was desperate, because for a few hours a day I could rest at home. At least he saw people other than us. In the end I noticed the boy was coming back upset and unwell, so I decided to keep him with me. He was thirteen. It was another hard period for our family. R. was not well, and so we were all exhausted and disturbed. We were not as we had been before. I could no longer give my attention to my other children, and they saw only an anguished, tired mother because of this son who had turned our entire life upside down.
...they took R. even though it was not the right school for him: I never understood what the right school would be for him
...they took R. even though it was not the right school for him: I never understood what the right school would be for him
I decided to turn to the mental health center for help, and there I met the doctor... and his assistants. At first they helped me break open this closed circle a little and understand my son's illness better.Later this group of doctors was transferred to another district and they followed up with me, but more slowly. It was harder for me to reach them too, and visits became less frequent. On the other hand, I managed a bit better than I had before.
I never imagined I would have to go through all this in my life. When they put the child back in my arms—he was recovering from a gravest illness that struck him at three months old (cerebral hemorrhage with paralysis of the third cranial nerve and enteritis)—I was aware he would not be like my other children. But that his illness would cause him such grave damage in his mind? No, I did not expect that. He was a child with motor difficulties, they told me. You must have patience and take him to physical therapy centers as soon as possible. I held this son in my arms, and he did not seem like the same child anymore because the illness had disfigured him a little. Before, he had all the beauty of creation—expressive, intelligent eyes that always followed me. Now his arm was rigid, and his fist was clenched where the paralysis had struck.
Later he recovered his former appearance. Now he is a handsome boy, sometimes even charming. From the day the hospital nun put him in my arms and said to me, "He is cured. Be brave now!"—I have held him in my arms still, and I wait for someone to help me, to come and lift him from me. But no one says, "I will help you." Everything is always difficult and complicated. Nobody can do anything!
I have learned to drag him everywhere with me. He no longer refuses to go out with me. We visit this person and that person now, we go to offices, to clinics, to shops, to the market, to the training center, and we also take public transportation. We have made progress compared to a few years ago. Thank God for everything we have managed to do!
For the past two weeks, M. and R. have been at a summer stay at... Things seem to be going fairly well.
When they come back, we will hear how it went. Instead of resting, my husband and I have begun cleaning the kitchen and painting it white. It was exhausting work, especially because the heat is intense.
The boys return from the summer stay. M. tells me the first week was stormy. R. didn't know anyone in the group. The vacation site was very crowded, and the people there were not very sensitive to these problems. Still, he stayed all eighteen days, even though he caused all sorts of trouble, faced many new things, and it was hard on him.
I feel my life growing shorter, and I cling to the little faith I have left. Help me, Jesus, never to lose it. You suffered for all of us and died to save us. Help us to suffer less.
Only He can heal my son. Men cannot do it. No scientist can. Lord, I offer you my sufferings and sacrifices of these days for the love of this dear son of mine.
They say those who think and write such things are mad, but I do not believe I am mad. On the contrary, I feel very strong inside.
— Lina Cusimano, 1984
Four Stories
My Son, I Do Not Believe by Delia Mitolo
He Was Always Turned Away by Lina Cusimano
The Law on Integration by Vincenzo and Irene Ruisi
Rehabilitation by L.N