Clelia Bastari
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It spoke about an eighteen year old girl. A girl, who, despite not having had a very happy life until then was, however, an energetic, determined person who never pulled back, never tired and saw a bright future ahead of her. Something I hope is normal at that age! She was attending the 4th year of Art School and apart from art, obviously, her great passion was dance, which she had studied for years and which gave her great satisfaction. She was already thinking of what she wanted to do once she finished high school, the only certainty being that she would have continued in the artistic field. She was excited and unsure of which type of art to follow……. But sometimes life chooses for you…… On 24th July 2002, alone, at home on a very hot summer’s day, she had a terrible headache, very strong, but didn’t worry unduly; she took a painkiller and decided to go to bed. In a fraction of a second your life can totally change and you don’t even realize it… The girl opened her eyes and thought that she had slept in an extremely uncomfortable position seeing that she couldn’t feel her right side; she absolutely had to get up and stretch herself to get rid of that unpleasant sensation………yeah………get up ……..seemed easy enough, but she fell from the bed as soon as she tried ……she must have slept in a really strange position, she thought ………God, what a sensation of pins and needles- no feeling! She couldn’t get up off the floor. From that moment she started to panic! ……She couldn’t get up off the floor, she couldn’t see properly from her right eye and her right side, all her right side was totally immobile, it gave no sign of movement, it seemed that it didn’t receive the “movement orders” given by the brain …. She thought to call someone. Her boyfriend, who was on holiday at home. Her mobile wasn’t charged and so she dragged herself, pushing with her left side, to grab the cordless phone just to discover that …….this too hadn’t been charged and was lifeless. The girl continued to drag herself on her left side till she reached the lounge, where she pulled the telephone cable to make it fall to the floor; the telephone was very old, the type that has the circular dial. She placed the receiver between her shoulder and ear, and with her left index finger searched for the hole with the right number……ok ……the number…what number??? She couldn’t remember her boyfriend’s number, whom she’d been with for the last 4 years, the number which her finger did automatically considering the number of times it had been dialed……… Now real panic began to set in. No, she dragged herself to get her mobile and dragged herself back to the lounge; G.I. Jane had nothing on her!!! (the power of desperation and the instinct for survival together with ignorance are truly amazing!!!) She looked up the number and called. The boyfriend’s mother answered and she said “it’s me, please pass him to me”; the girl was convinced that she had repeated this many times but her interlocutor understood neither who it was nor what she wanted. The mother said she couldn’t hear properly “it’s me, please pass him to me”…maybe intuition, maybe the sound of her voice, in the end she passed the girl to him! “ It’s me, please hurry, I’m paralyzed, I don’t know what’s wrong with me, just hurry!” She didn’t know what he understood, but the fact is that, soon after, the doorbell rang and the girl thanked God also because she’d managed to reach the button to open the main door! “What is it?” , “I don’t know, I can’t move, call the neighbor who’s a volunteer with the Red Cross”; from the arrival of the neighbor who called 118 (ambulance emergency) the girl remembered nothing ………Her brain had coped with as much as it could. She felt safe. She disconnected. When she opened her eyes…… that’s when HELL began. . Suffocating white, confusion, blurring, shadows of people, white coats, drips……. Well…..the girl doesn’t remember much of the first few days. She asked herself what could have happened to her and why were her parents’ faces so desperate. She thought that whatever the problem was, within a few weeks all would be solved. It couldn’t be so serious, because: 1 _ it can’t happen to me! It always happens to somebody else!!! 2_ I’ve got so much to do I can’t afford to be ill!! These were the thoughts of the eighteen year old girl who had always lived to the height of her possibilities. The days passed, eternal…..she realized she was living a NIGHTMARE. Immobile in bed….drip…her right side inactive…….scans, ……tests and more tests, ……drip…….pills……. …the right side doesn’t respond…..paresis……drip…….no movement….no feeling……..tests…….pills Crying and crying …….endless…….desperate….in her neurology ward, the youngest patient must have been 60 ….everything seemed unreal ………she cried so much she thought she had no tears left ……….. Tests and more tests ……scans …. Pills……….drip……….. She was convinced she would wake up – it was only a bad dream. It couldn’t be real…….. But she didn’t have time to go crazy, she had to draw, she was born to draw, use her body and her right side, anyhow, to create, model, paint ………it was written in her DNA, otherwise why was she still alive, if not for that? An ischaemic in a part of the cerebral cortex in the left hemisphere ………tests and more tests …….no one knows what could have caused it - probably an embolism……. Tests……still more tests ……she was so full of medicine and used to the tests that she now fell asleep during a scan …..nothing …..the cause could not be found …….until: Transesophageal echo test (a test that, if you’ve never done it you can’t understand; only if you are told of the little tube going down the esophagus which is just slightly uncomfortable under local anesthesia” can you accept the extreme atrocity of the thing…….but if one knew what it was really like they would never have it done) The absurd suffering had served for something though – the girl was diagnosed with “Foramen Ovale Pervico”, a cardiac anomaly in which the right atrium communicates with the left at the oval fossa level; this is common, necessary, during the fetal phase, but should close within the first year of life. From that “hole which hadn’t closed, the blood from the veins (bad, not oxygenated) had gone into the arteries (where the blood is good, oxygenated), the recirculation had formed an embolism, which had reached the brain, reached the micro-capillaries that get smaller and smaller, no longer able to pass, blocked the flow, maybe just for a fraction of a second; the fact remains that some brain cells of the cortex of the left side that coordinate the movement and feeling of the right side of the body, remained without oxygen and died. They do not regenerate. The only hope was that, being a young brain (and we use only a minimal part), the cells close to the “dead zone” could “learn the functions” once carried out by the “dead cells” and so begin to recover …….. Nothing is sure ……..”medicine isn’t mathematical” ……”each brain, each organism reacts in its own way which can’t be predicted”, “you are a one in a million”, “lucky in your bad luck” “if it had happened while you were on stage dancing you wouldn’t be here to tell the story” “you can marginally recover up to 10 years from the ischaemic event” …the doctors, “you have to resign yourself to the situation if you remain like this. You just have to accept it” a relative ……..@ _____@ …it wasn’t a dream …….the argument with he who said the last phrase was real, my parents’ arguments were real, the immense and indescribable pain of my situation was more than real. It is impossible to imagine what the girl went through ……give up? At 18? NEVER. Sitting in a wheelchair, looking out of the window of the neurology ward, she listened to the Ligabue album which had just been released; she listened to the words from her headphones “how’s it going out there” ….emblematic. At the words “you were beautiful” at the phrase “you were full of life” the pain was too much …….the lyrics of “I want to want” made her cry so much she felt “emptied”. Rehabilitation …drip ……pills …….tears ……pills …..drip…..rehabilitation ……. She looked at herself in the mirror, but distances and her perception of space weren’t reliable. With great difficulty she raised her arm with the comb, but as soon as she tried to comb her hair, the comb fell from her hand; there was no feeling …….. And with all the willpower in the world she couldn’t eat with her right hand; it was such a strain she lost her appetite ………. She learned to stand up, to balance herself, to move, and very slowly, with the physiotherapist, learned how to go up and down the stairs ……really difficult. The actions that we take for granted, do automatically, and ignore because they seem so banal, like washing our teeth, unscrewing a lid or peeling a fruit, in that situation acquire a completely different meaning. What is truly important is to be SELF SUFFICIENT. They say that you always remember when you were18 ……in this case nothing could be truer. They say that suffering makes you a “deeper” person …. At the age of 18 I think that one could do without such depth! But life doesn’t ask for “permission” ……… .. the girl had become so used to her days in the hospital …….the days were planned Thermometer, breakfast, pills, medical visit, drip, lunch, pills, physiotherapy, dinner pills, barley coffee……sleep….she felt safe ….. she didn’t want to leave…… outside wasn’t suitable for her …….if it had ever been before …….it certainly wasn’t now. So when they told her she was ready to be dismissed she wanted to die. Ready to go out ?????? But she couldn’t even write her signature!! (Writing is the most difficult common action). They said she could leave because she was considered self sufficient. She felt abandoned by God. What really drives you crazy is “NOT KNOWING” IF and HOW MUCH you can “recuperate”. She had her fifth year ahead of her. After four years in an art school in which she had “spat blood”, given her soul and had totally believed in, she couldn’t give up without giving it her best shot. She had a driving license which she had obtained just one week before the “incident” …..she had to learn how to drive again … She still had a life to live ……even if at times she thought it would have been better not to have one … That year was certainly the most difficult of her life. Rehabilitation …school ….rehabilitation ….following the lessons of the fifth year of the Art School (ISA) ……then to going to the hospital, to the rehabilitation room where she filled in sheets of paper with circles and lines like in the first year of primary school …….. In October she had to have a heart operation to “close the hole”….Thanks to the innovations in the field of surgery, they didn’t “open her”, but she was operated with a probe. She had hoped that by closing the hole everything would returned as before the incident……..a hope without sense but real for her until, having had the operation, she understood that nothing could have made her return to the way she was before. She gave her all to recuperate and this avoided her going crazy. To her the improvements seemed infinitely slow …….she had been so active before, definitely too active, therefore her recovery seemed unbearably slow…..but as long as this “recovery” continued it was a good and positive thing. Day and night she did the coloring exercises which she had been taught in her first year, to regain familiarity with using her hand, arm, the pencil, the brush, the colors …. Obviously, she couldn’t enroll in dance classes and she was exonerated from physical education classes ….. she suffered a lot for this ……… (she couldn’t look at dances, recitals, etc. because it hurt her too much). While the others were in the gym having their lesson, she went out and sat on the swing and listened, with her headphones, to “When you know that words are no longer necessary, when you look for courage so as not to feel so bad, when you blame God or destiny or who knows what, because no one can explain why it happened to you” A truly awful year. She had concentrated entirely on school, so as not to go crazy, she did all she could to recuperate, to sit the exam like all the others ….and she did ….she came out with the best result and a thesis of 100 …ineffable. Art had really saved her ….she had always had an original and open view of things, but at that moment in her life a “door had opened for her giving her an even superior sensitivity”. She saw things in more depth, and she needed to express this, but words wouldn’t have been enough; body language, physicality, muscles and hard work were indispensable, too. She had to free herself, relate, communicate with material, express pain and joy through pigments, spread the stucco with energetic and contrasting strokes, apply very diluted acrylics, so as to produce glazing upon glazing creating very particular shades to be discovered; the mural where she had realized her “work” had absorbed her body and soul. A hard but beautiful experience. But the “best” came after her maturity exam …. EMPTINESS Loss of direction, fear ….she would have to say goodbye to the fantastic people who had shared her journey ………..the end of her high school period was like a jump in the dark. She had thought about successive schools ….about “detours” if her right side didn’t collaborate ……. The weight of the Ischaemic incident and the months gone by began to be felt soon after the exam …….. Her right side had recovered about 80% of its movement and about 70% feeling ….for one year these were excellent results……..but for the person who had imposed their life on the precision and control of the right upper limb …… Panic attacks, depression, anxiety ………she wouldn’t be able to study “away ”, she had to put aside any idea of studying “away from home”, like the Academy of Brera …….. Her mission was to repossess, as much as possible, her right side. She chose the International School of Comics; she had always liked it, but before the “incident” maybe she wouldn’t have chosen it as she really had a thousand other opportunities…….but now it was perfect, it was in Jesi and for her right side comic strips would have been the perfect psycho!!! She reached the point were she was drawing 14 hours a day (no social life, which is not unusual for comic strip drawers) got tendonitis and more often than not forgot to eat! She improved so much and felt so comfortable in that world that she seriously thought of doing it as a profession. A thought that slowly, slowly she abandoned, due to her experience; the time, the commitment and work involved in preparing the plates were neither satisfying nor profitable! The fact is that the 3 years of comic-strips and the fourth of manual and multi-medial coloring confirmed her passion for artistic expressive forms, made her understand that she was still able work manually in this field and allowed her to meet wonderful new people, new colleagues. These years were also fundamental for her psychological recovery as well as physical; they confirmed her capability and passion for art, as a means of expression-communication, art in its many forms. The young woman rediscovered her love for all forms of art in which she was able to express herself, she understood that she couldn’t limit herself to one sole sector, she rediscovered her Love for Life. She recovered 100% mobility and 98% feeling. The paraesthesia on the right side of the body (that 2%) will probably remain with her for life, even if she still has a three year margin for recovery. “Externally” you can’t see anything. It is something that won’t leave her, but one gets used to everything …she doesn’t even remember what it was like to have the same level of feeling on both sides of the body. She could have asked for invalidity benefit, but she didn’t want to. She wanted to feel like everybody else; if anything, sometimes, for her want of doing, she exceeds her limits, overdoes things and feels ill after. She’ll have to learn not to give so much, not to give everything. Willingness, the want to do things and kindness, in this world, are often misunderstood and devious people, in front of someone with these qualities, take advantage ….. but she has the intention to recognize and respect her limits because she is not at all ready to give up!!! …. More or less this is the story I had written in that document which I lost I wanted to share and speak openly about my “Incident”, because at last I am able to feel less pain and look at the “event” with a bit more detachment without being totally blown over by it. I have understood that it isn’t a fault, I don’t have to hide it or feel ashamed, just the opposite. It’s an important part of me. A daily reality that can’t be cancelled. I was reborn on 24 July 2002. I was given this second chance which I don’t want to waste. And at the end of this I add an enormous THANK YOU to all those extraordinary people who stood by me …. true friends …….thanks to those who don’t know me but believe in me ….. & ….to hell with those who saw you X, to hell with those who wanted you X, and to hell with those who thought of you as …)” Clelia