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The boy in the wheelchair and his autistic friend

O grande amigo

The great friend

My relationship with most of the kids my age was never that good – be it at school, in my family and in other places. It is quite true that I wasn’t always completely secluded though. A few classmates, usually (but not always) the most focused and less noisy and disruptive, just approached me and, if not formed a close friendship with me, at least provided me with some sort of “fellowship”. This was, however, more common when I was a younger boy and gradually less common in my preteen years. This lack of connections of mine came, I could say, from both sides. I didn’t want to live with and join those kids that I considered terribly rude and stupid. For me they were completely silly, and then I didn’t want to look like them, and even less to hang around with them. I avoided speaking what they used to speak and doing what they used to do. I really liked to do things my way, to be different, even though, deep-down, I regretted getting alone because of this. As for them, they weren’t interested in being friends with the “nerd”, the “weird boy”. I got marks way too high and wasn’t unruly enough. This would ruin their reputation. It would be better for them if they kept away and just got near to mock me, slap me or kick me (or when we had any possible group assignments). However, one particular year, among many others, was very different from all I had experienced before – and, I dare say, from what I experienced after it as well. February 1998. I was almost 12 when the classes started. For a change, I was going to a new school. The 6th grade class was big, with more than 30 kids, as usual in Brazilian public schools, although this didn’t bother me (much). Of course, the noise wasn’t really pleasant to me, but after six years in such environments I had got used to it. But the good part of being in a big class was that it was easier to fly under the radar. This, by itself, was the best thing I could have. Two weeks had been gone after the start of school. As usual, I hadn’t done more than exchange a few words with one or another classmate that sat next to me. At breaktime I kept myself apart, walking to and fro and doing nothing but watching the bedlam that was in the yard. At PE classes it hadn’t been different. Fortunately the teacher didn’t seem to be in the mood yet to force the students to take part in the activities, so, phew!, I could keep away from the soccer, volleyball or basketball teams. It was a very warm summer afternoon and the sun was shining bright in the sky. Guided by the PE teacher, we went out into the corridor towards the courtyard. The daylight made my eyes sore. Most of the boys were very excited, and ran straight to the soccer/basketball court that was in front of the building in which our classroom was. The girls (and a few other boys) went to another court, at the right, ready to organise their teams for a volleyball match. I didn’t even enter the courts, keeping me on the other side of the wire mesh that separated them from the courtyard. I didn’t want to risk being called to play (still – still – I hadn’t got my usual reputation for lousy player, and then some of the boys could possibly invite me to join one of the teams). I’d rather stand there, just watching the matches, or sit under the covered part of the yard, or even find something better to do by myself. And on that day I had just found it. I spotted a piece of brick left in the floor near the wire mesh. Ok, there was my momentary pastime. I strategically placed the piece of brick in the small corridor between the covered yard and the court. Then I took a few steps back, ran and jumped. I may explain: I was playing long jump and the brick was the mark I had to reach. I jumped two, three, four times, unsuccessfully. And I would have done it many other times hadn’t it been the interference of someone who was close, whom I hadn’t noticed yet. – You have to go a little further if you want to achieve the mark. I heard that voice and looked to its owner. There he was, left alone just like me. He was one of my classmates, a boy in a wheelchair. All I knew about him at that time was that we were namesakes. Today, I can see that we had much more in common. I smiled and, as accepting the advice, resumed to my jumps, now under his “coaching”. From that moment on, I can’t remember the details very well, we started talking to each other and spending the PE classes and the breaktime together.

Not long after that he told me about his “problem”. He suffered from muscular dystrophy, a genetic disease that had taken away the strength from his muscles and consequently made him lose the use of his legs when he was only 5. But for me, the fact that he was in a wheelchair didn’t make the slightest difference. Somehow I was getting on with him, and I knew he felt the same. Little by little we got to know each other, up to the point of creating certain trust, in such a degree that I had never experienced before, and which I haven’t experienced ever since. We talked about everything; we shared secrets and promised not to tell anyone about them (and I’m sorry, but I’ll keep that promise). We even talked about girls, something that would have left me completely uncomfortable in front of anyone else, but not in front of him. I remember that, in order to avoid all the din the kids made at the end of the breaktime, the school inspector asked for someone to take him to the classroom a few minutes before the bell rang. And, of course, he always pointed at me, so that then we’d have some more minutes to talk. By the way, after some time of “driving” the wheelchair to take him wherever he wanted to go, I became some sort of an expert – holes, ups and downs, and stairs in that not-even-a-bit inclusive school weren’t obstacles at all. Then, we spent almost every minute of our free time together. I was his legs, and he was the social skills that I lacked. Through him I got to interact with the others; he understood me, “translated” me to them, and somehow helped me to understand them better. Consequently, with other boys and a few girls, we ended up forming a small group of friends with such a good relationship that I have never forgotten. To someone who was surrounded by close friends all their lives this may not mean too much. To me it was unique. Unfortunately, it didn’t last more than one year. In 1999 I had to move from the neighbourhood and from that school. After that, I saw my friend only a very few times. I met his mother once in a while somewhere at the streets, and she always told me that he complained a lot about not having another friend like me at school. It was the same with me. I only got to see him more frequently again five years later, when I moved back to the neighbourhood, but not for long. The dystrophy had advanced, and now he could barely move his arms. We didn’t talk much at that time. I was afraid that he wouldn’t be the same boy I once knew, since many other kids I had met had changed a lot (and for worse) during their teenage years. I regret not having got closer to him as much as I could at the time. Two years later I got to know that he was in hospital. I don’t remember having willingly gone to a hospital to pay a visit to someone before that, but I just couldn’t help but see him. He was unconscious and in a critical condition. I would like to have spoken to him anyway. I was sure that he would hear me. However, the presence of other people in the room somehow intimidated me. Then, all I did was touching his arm and, full of hope, wishing he would recover. He wasn’t able to bear the advance of the disease. A few weeks later, I was going to his funeral. I didn’t know what to do, and I couldn’t understand what I was feeling. I think that, in my heart, I can’t understand at all the meaning of death (and I wonder if anybody can). I find it hard to conceive that a person just ceases to exist, like, all of a sudden. And maybe this was the reason why I couldn’t shed a single tear. I’m aware that it didn’t last as much as I wanted, and that there’s no chance now to continue that story. But I thank God for having given me the privilege to have such a special friend. And I also thank him, my friend, for having done for me much more than I did for him. I thank him for showing me what being friends really is. If it wasn’t for him, I’d never have fully understood this very deep and beautiful thing called friendship. Thank you very much, my friend.

O garoto que nasceu no espaço

No último post falei um pouco sobre algumas das minhas fixações, especialmente durante a infância. O post de hoje se relaciona um pouco com esse tema.MC900295695

Estava há alguns dias vasculhando alguns cadernos antigos (gosto de guardar tudo o que for possível; mantenho caixas e caixas de cadernos, papéis, jornais, revistas, etc. – e como vocês, pais, talvez possam imaginar, minha mãe não se agrada muito disso) quando encontrei meu caderno de Português da 7ª série, datado de 1999. Eu tinha 13 anos na época, e frequentava uma escola da rede municipal de Curitiba. Folheando o caderno, encontrei um texto, ou melhor, um rascunho escrito a lápis e comecei a lê-lo. Foi difícil (e cômico) entender minha própria letra, mas consegui, com alguma insistência. Como o texto não tinha um final, cheguei à conclusão de que fora feito como uma atividade da matéria, e provavelmente foi passado a limpo para ser entregue à professora e terminado somente na versão final – tenho o péssimo hábito de não concluir os textos nos rascunhos e deixar para escrever o(s) último(s) parágrafo(s) já na versão definitiva, escrita a caneta.

De qualquer forma, o conteúdo do texto me chamou a atenção – além de me revelar que o tema proposto pela professora fora livre, algo que eu adorava; lembro que a maioria das propostas de produção de texto exigiam que eu escrevesse sobre temas predeterminados e assuntos que não me interessavam. Por certo deixei minha imaginação voar livre dessa vez, e compus um texto que me agradasse (baseado também no que eu via e lia, claro), com temas que eram nada mais, nada menos que as minhas fixações naquele momento. Talvez eu não tivesse percebido isso na época, mas relendo o texto hoje tudo fica muito claro: o espaço, dinossauros, palavras inventadas… Além disso, a questão de o ‘personagem’ ter nascido no espaço, no vácuo, e não saber exatamente a que lugar pertencia – e vocês devem notar, lendo o texto mais abaixo, que ele tem de escolher entre dois planetas, dois mundos. Justamente naquele tempo, eu começava a me sentir um “estranho”, alguém que não era como os outros ao meu redor. E a ideia de que vivia ou pertencia a um mundo à parte permeava meus pensamentos.

Depois do esforço de decifrar meus escritos antigos, tive o agradável trabalho de digitar o texto para postá-lo no blog (e em breve pretendo digitalizar a folha de caderno também, por mais que ninguém possa entender o que está escrito lá), mantendo tudo como no original, inclusive os pequenos erros de pontuação e acentuação. O texto segue abaixo, com um título que incluí quando o digitei, pois a versão original não dispunha de um. Com vocês, Jacob Galon aos 13 anos.

Nasci no espaço

Nasci no espaço, em uma nave e tive de escolher o meu planeta natal. Existiam duas opções: o planeta Proton, da galáxia de Perseus e o planeta Zermacron, da galáxia de Orfeus, ambos em galáxias perigosas.

Escolhi á Zermacron, me atraiu mais. Lá, resolvi melhorar os conhecimentos que estão dentro de mim. E um homem me disse para escolher entre me arriscar em um passado desconhecido ou voltar 125 milhões de anos atrás, até a era dos dinossauros. Escolhi o último. De repente, estava lá, num lugar sem nenhuma criatura humana.

Levei um susto quando um dinossauro (Protocetatops) conversou comigo. Ele me disse que estava havendo uma briga entre o Tiranossauro e o Tarbossauro. O Tiranossauro vence, arrancando a cabeça do inimigo. Ele me vê, e sai correndo atrás de mim.

Eu rapidamente, giro o botão de “Apagar”, e de repente o veículo espacial se dirige á Pronon. Meus pais me informam que Pronon é o planeta de meu pai. Eu dirigia o meu veículo quando de repente, aparece uma nebulosa que não deveria estar no meu curso. Mas não há tempo de desviar. E o veículo começa á entrar em pane, detectando radioatividade. Uma forte chuva de meteoritos me atinge. O veículo começa á sacudir. Eu tenho que pedir ajuda pelo rádio.

Eu estou com muito medo, mas mando a mensagem. Eu uso o motor de emergência para seguir na direção de uma fraca onda de rádio.

Eu sou puxado por uma gigantesca estação móvel de pesquisas, R5-3 UGB. Todos da Junta Governativa do Universo me recebem bem. Eles me informam que há uma estranha doença em Axle, que eles não têm cura. Eu resolvo ir até esse planeta. A estação entra na atmosfera.

Há poucos seres vivos no planeta, e os que estão vivos estão muito fracos. Os cientistas dizem que apenas as pessoas imunes á doença desembarquem. Os cientistas dizem que sou imune á doença.

Os doentes dizem que a epidemia atacou de repente e que em poucos dias, quase toda a população estaria morta.