Life After Stroke: Riccardo, Perinatal Stroke
Translated from Italian
Riccardo was born with a smile. “Why don’t you cry?” “He smiles, he’s just born but he’s already happy!”
Here’s what I remember of his birth, I remember his rosy face, plump and above all peaceful.
Maybe that’s what I want to remember because in reality this feeling of peace, of extreme beauty lasted a moment and then it slipped from my hands, despite the efforts to stop the memory of that beautiful perception of emotional perfection. “He’s hyperactive, we do little “exams” but will see that it’s nothing, maybe he’s just very, very quiet.”
Left hemisphere prenatal stroke, they told us “There is no cause or rather we do not know it”.
The thought freezes while everything is spinning around, you see the people talking but you do not feel anything, you stay motionless, in apnea, thinking only of that wonderful smile in which you recognized immediately and you think that it is not possible, that the doctors are making a joke, a very bad joke. “Go away! I’m not the one to communicate all this pain, I’m not asking for you!” “The brain injury is very extensive unfortunately, we are going to see, in the meantime we will see each other often, very often.”
We’ll see? See what? And now how can we stay here, so, waiting for answers. Will he walk? Will he talk? Will he be able to reason? We looked at each other, my husband and I, for a long time, without saying anything and, continuing to say nothing, we decided to fight with all possible resources. Fighting for that smile by moving away from any person approaching thinking that ours was a misfortune, we needed beautiful and positive thoughts. There had to be some.
I will not dwell on the long years of physiotherapy, speech therapy, visits, exams, (after some time we have inserted new methods of intervention and more specialized teams). We, one with the hospitals. As a nurse, I began to fear the hospitals, the surgeries, the waiting rooms with the parents and the lump in my throat. I thought that while we waited, we could embrace each other, giving each other strength, instead, we could only meet glances silently accomplices and frightened.
The memories of the intensive period have become very diluted, some I have just removed. I stayed home from work for five years and then I resumed my job where I worked before he was born, with a part-time contract though. My work, which I love, has helped me a lot. Some colleagues have helped me a lot. Enrico, our four-year-old son, wise and protective, was waiting for me at home. He suffered our absence trying to become a perfect child and he risked becoming him really if it were not for that mix of insecurity and fragility that I adore. I felt guilty about spending less time with him than with Riccardo, but now that I see him independent in Padua, while he’s becoming a physicist who becomes a philosopher and maybe a bit of a poet, well, I’m very proud of him.
The relationship between Enrico and his brother was not at all simple because Riccardo has always seen Enrico as the healthy son “that came good”, even a bit “genius” and the distances have made themselves felt and not a little, ignoring more than anything. But now that they are older, their relationship seems to be better. Enrico has dedicated a letter that expresses all the love of the world. Time, we must always give ourselves time, even emotions need to be understood.
Riccardo walks, speaks, is autonomous, is intelligent, is passionate, is a swimmer and loves life. Riccardo, however, has lost that initial smile and this was my biggest defeat. At some point in the journey he recognized his disability through the eyes of his peers and stopped there. His passions penalized him because they were adult and incomprehensible passions like elementary politics or journalism in middle school. He was proud of it, I was proud of it, but instead they were laying the groundwork for an abysmal distance with their peers, play station enthusiasts or card games with characters with strange names.
So, it happened that one summer afternoon a so-called friend spit at him for no reason that we could understand. Others began to be ashamed of his three-wheeled bike. He understood that a confidence given to a young girl he was in love with turned into a horrible scorn. These and other episodes made him believe that he was not enough and gave up not to run the risk of trying the failure again, not to be chosen as a possible friend. The effort to face the gaze of others took the upper hand so much that they lived with their lowered gaze, always. The others no longer existed except as adults, unique human beings with whom to maintain meaningful relationships.
The surprise caught me unprepared, I was used to taking care of the physical pain, he was so smiling and combative, what had I left? I certainly had done something wrong, errors of communication with the rest of the world perhaps? We had to unplug from the physical rehabilitation to take care of its emotional sphere trying to break down that barrier that was built.
Epileptic seizures reached him at 12 years old, in the midst of this emotional explosion. In front of the school, with the comrades who surrounded him, who were shouting, he who perceived everything because the crises were partial without loss of conscience. He was the one lying there with his body trembling, helpless and terrified. The epileptic seizures cannot be forgotten. “Mom, ask me everything you want but not to accept epilepsy, I cannot do, it’s too much for me”. From that moment his desire to fight and to improve stopped. “I do not do anything with my performance physique if I do not get accepted, if they are afraid or ashamed to go out with me”. We have been helped by a psychotherapeutic path and by high school teachers who we will never stop thanking, not believing that there can be teachers like that.
Slowly, day after day, we try to teach him to rely again to be less rigid, to move the attention itself to “feel” the other in a different, more welcoming way, without selecting in a fierce way. Our life has certainly changed; you are sucked into a vortex of pain and feelings of guilt, a sense of powerlessness and fragility. You have to control too many things, change priorities. Then when the vortex subsides, you find yourself stronger. The couple’s relationship was strengthened by the complicity of the battle; united we have always been, we have fielded each one of his positive characteristics to rely on.
Now Riccardo is 18, he is painstakingly regaining confidence and smiles of smiles despite a shadow of melancholy always accompaning him. If I put together all the words spent to compare, to rearrange the thoughts, to translate the events to give positive and acceptable references, well I would do several times around the world. Yes, my life has changed, our life has changed but I can not imagine a different life. This year we would like to celebrate the age of majority by organizing a party in which to invite all the important people in his life path: it is a wonderful and long list, a list full of love. For you mother, for you? “I suffered Riccardo and I still suffer when I see you tired, surrendered, in fear. But remember that among millions of people I would seek you, I would find your look and your wonderful smile that was absolutely destined for me, for us and for no one else.”
Thank you to Fight the Stroke for their help in gathering stories from Italy!