Le più grandi sciagure dell’umanità sono state originate da chi ha voluto semplificare la vita pianificando il mondo.

Giovannino Guareschi

domenica 17 marzo 2013

Face to face with Silvia and Ugo

Ugo and Silvia welcome me with children, Richard of five years and Letizia of 3, in a gloomy Friday of January, in the late afternoon after kindergarten. I know Ugo of over twenty-five years, he was my best man and more than three years is suffering from ALS, which is no longer a rare disease known as Amyotrophic Lateral Sclerosis. Communicates through a voice synthesizer controlled by the eyes, the only part of the body is still able to move. 

Q. I ask Silvia: talk to the beginning of your relationship. 
A. We met as adults: a year of engagement, plus Ugo lived in China for work [Ugo is a mechanical engineer]. We fought a lot, from boyfriends! Luckily we got married a few months later. One day, instantly, I had a certainty that this man, since time immemorial, had been designed by God for me. There were no other persons with whom, like him, felt that it did not need to pretend. I could not let me go! It was a small great certainties of life, insights into how flames are the way to find the fire. We got married in 2005, do you remember our real wedding! Richard was born in February 2008, shortly after I look forward to Letizia whose birth is scheduled for September 2009. In June 2009, we find that Ugo is suffering from ALS. 

Q. How did it go? 
A. Ugo felt a little tired. A friend physiatrist has the foresight to tell some tests that seems advisable to make. The verdict is terrible: Ugo is suffering from ALS. The 'impact of this news was brutal. The specialist looked in the face of my husband and me, I had the belly of the seventh month of pregnancy, and told us in no uncertain terms not to make long-term plans, not to take out a mortgage in ten years. It 'was a shock and an insult. We tried to react and deal with the reality, however, unexpected and full of anguish. The aid has come from the center of Nemo, Niguarda (Milan), a specialized center for ALS, where the approach is quite different: the drastic "nothing to do" that we felt sentencing the doctor is in contrast here a simple and concrete "see what we can do." We were next to help us understand what is the best way to deal with the situation. Unfortunately, with Ugo ALS immediately showed a voracious beast. In early September, when Letizia was born, Ugo already struggling to stand up. We begin terrible months, in which, with frightening speed, Ugo seems to give ground to the disease in a retreat without respite in a few months in a wheelchair. In February 2010, after a lengthy stay at Nemo, Ugo no longer moves his arms. 

Q. How did you go on? 
A. When Ugo comes from Nemo, in February, began a movement of solidarity and friendship which soon assumes proportions not provided. Our friends, especially those of the movement Communion and Liberation are organized in shifts, every night there's at least two, with dinner ready and the sleeves rolled up. Of course, this situation has some difficult aspects: it means that the home ceases to be home, and must be open to a coming and going of generosity and friendship that has beautiful aspects but requires acceptance and welcome. Makes a great attention to our situation, and yet, paradoxically, many of the people who come here say they do so because they feel helped by us. It is to help, but often the motive is stronger, and resides in that we all need to be helped. This was miraculous. We do not do anything, do not want to teach anything to anyone, but when someone comes here and tells us to get better himself, and there are several people who want to be able to come and help us. Do you think you are in the parish shifts because every day there is someone who recites the rosary for Ugo. We thus know that someone dedicates time daily prayers and especially for us. Others have organized pilgrimages to the tomb of Don Giussani, which has been recently opened the beatification cause, ask for the grace of healing. A pray for us there are friendly people, but also many unknown: even a cloistered monastery in Armenia, to which a friend told our situation. The power of prayer is real. For us, especially for me, it's like having a close person. It is difficult to explain, if you do not have experience: they are not empty words, that come to naught, but it is a very real and substantial aid. Spiritual help, then joins the practical help. We have people who come here and lend a hand in everything. When I need something, pick up the phone and I always find a greater response than expected. 

Q. How have you changed in recent months? 
A. I learned, first of all, to love my husband as I never imagined and hoped. I love him and remarry immediately, in a situation where it is located. I understand that a person is not what can or can not do: its value lies elsewhere. And then I learned to ask for help, friendship, support and companionship. Too often we try to do everything by themselves, arrogating the right to do it to ourselves. Instead we are creatures dependent, and Ugo shows a striking. He objectively depends on the other in anything from smaller, like scratching his forehead, right down to basics like eating or even breathing. Yet he shows, so extreme, that each of us is. I myself have learned to ask for help, because objectively I can not do: it is a situation bigger than all of us. You get to see that man is made to be with others in a community setting. I am convinced that those who die of despair on the one hand not to have realized that every difficulty holds good possibilities for people who live there and the other has closed in on itself, remaining alone and so condemned to anguish. The presence of others is a huge help: someone who comes and asks how you are, how you doing, if you need something, and not only asks for formality, but because he truly cares about you. This gives you an infinite breath, gives you the opportunity to start again, to look at those around you and that you love in a new way every day. And what is more necessary than ever, as each day is marked by fatigue. Since awakening, Ugo has breathing problems because of secretions that accumulate in the cannula during sleep. Then you have to move for personal hygiene. Too often approaches to people with such difficulties as if they were first of all ill. Instead, Ugo first of all is my husband, and a man who needs to take a shower like everyone else. And, like everyone else, Ugo take a shower every morning. Sure, it's an effort, first of all for him, because we want to move a lift ... Yet all that keeps you on your dignity. We had suggested a motorized bed, such as hospitals, from the first admission. However, we have chosen to sleep together again today, in the "Latvian", as any married couple. We want to maintain a family atmosphere for all purposes for our children. Ugo is the father of her children: a father with problems, a sick father, but always dad. And the whole family live the faith and the hope of healing. Children are wondering when the father can heal, as if he had a cold. None of us lives in a perspective of negativity without hope very much believe in miracles. It could be something striking: close the door, go in the other room and I find my husband standing healed. And this could be! Or, another miracle would be that he was a curative therapy for ALS, and this is the miracle that my husband asks God, because it would not only healing for him. And I believe that only those who suffer as an ALS sufferer can understand what it means to ask the same salvation for some other patient who do not even know. 

Q. I understand that you and Ugo hold a course for engaged couples, is not it? 
A: Silvia smiles: I believe I have "stretched" the boys who have come here! I told them plainly that in life you never know what will happen, and you have to consciously face the decisive step of life, that of marriage, knowing that it can also happen a situation like ours. Of course, when you do the marriage vows, "in sickness and in health", you always hope that the disease does not happen. Yet there promises to be next to each other even in sorrow, it can also be the pain of betrayal, but also to see that we have betrayed the idea of ​​the other. I, Silvia, I had the grace, the wedding day, to hear this very clearly: I made those promises with consciousness, that day, "I was there" with the head and heart and I was overwhelmed by emotion. I took charge of this mission, because marriage is a mission, like going to Africa and helping people to convert. Marriage is not only the means of "that day", but yes a renewed every day and every night, when we will not go to sleep with resentment and anger in their hearts, because the moment of darkness of the night does not extend to all life. Although falling in love passes, constantly reaffirms the significance dell'accompagnarsi each other to their fate: to become more real every day, reaching the truth about themselves. Looking back on these years of hard work, who I would not be justified if I dropped everything? What keeps me tied to a family situation like this, where, in addition to Ugo, the kids I require a great deal? The yes my wedding is not a yes only me, but is accompanied by the presence of an Other. It is thanks to him that I can now watch my husband with a tenderness and a love more powerful than those of the wedding day, it is thanks to him that my husband, in turn, want me so well. "I need you," she says, and it is not only a need for things to do ... As a husband has the freedom to tell his wife something like that? Our relationship is true because it's very free. We look for what we are, and this is a difficult goal. We feel "blessed" because to us, however, this disease has brought so much grace. Our promises were spoken in front of an Other who lives with us, and whose presence and closeness is what keeps us together and helps us to have mercy on our limits: those of the other, but also their own. Sometimes, unknowingly, I happen to hurt Ugo: and there, first of all, to myself that I have to ask for forgiveness, admitting to be limited and they can not do everything well. Loving each other means not from his own limitations, but by the presence of the other. Also because it was not easy to live with Ugo in any case: it's a terrible big head! (And this is true, I can subscribe too!) 

Thank you Silvia and thanks Ugo for your testimony.

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