CMON – Cave of Monsters / AMTRO – Aliança dos Monstros

Trespassing of Boundaries and Unification of Differences Through Art

Source: BBC World Service – The Cultural Frontline, Film, Feminism and Frankenstein

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Ground Zero – 2018 Proofread

Some people see my book as an exercise of self-pity. To show this is not the case, I decided to ground the ideas it revolves around on a conceptual starting point, a ground zero as I put it. Therefore, the readers would do good to at least read through this essay to follow suit the saying: “haste makes waste”.

I graduated in dance from UNICAMP (University of Campinas) in 1990. Close to the end of the course, I was doing dishes when, suddenly, my left hand got inexplicably very weak; so much so that I could not hold a glass. I hurried to the doctor then. After hearing me out, he told me that I had an inflammatory muscular condition; so he prescribed me anti-inflammatory drugs.

Because of my dance training as well as my personal experience in other physical activities, I knew that this diagnosis was not right. Therefore, I did not take the medicine prescribed by him. However, almost a year later I went back to him as both the tip of my nose and my skin got numb or itched often. All he did was to ignore my complaint and scold me for not having obeyed his orders one year before.

As the frequency and intensity of these occurrences increased, I went to see another doctor. She told me that I had a neurological condition and that I had had partial convulsions that due to a pinched nerve streamed either from the central nervous system or from the peripheral one.

It made sense to me, but even so, all the symptoms I was having just started to seem right when I threw a party to celebrate my birthday. While I was buying some drinks, I talked to the bartender with the right hand over the counter while hiding the left one behind my back as it moved like a crawling spider. What had seemed funny and intriguing to me at first, became so frequent and intense along the party that I rudely left my friends in it and ended up celebrating my birthday alone in the hospital thinking about death rather than celebrating life.

I spent the night and almost the whole of the next day over there, and the doctors were certain now that I had a problem with the central nervous system. Therefore, they scanned my brain. With that, they discovered a strange body in it that would probably grow. Nevertheless, it was neither possible neither to make a precise diagnosis of what I had nor to define the severity of it. Even so, the renowned scholars of the Medical School at UNICAMP were quick to give me their “verdict”. I use this word because it better describes the fact rather than the word diagnosis, since that previously to any testing, those doctors were certain I must have an AIDS-related disease just because they inferred I was gay. Sticking to their judgment and leaving aside any ethical standards, they abandoned my case as they were certain of my imminent and inevitable death,. Fortunately, a medical student interned at UNICAMP hospital and that had seen me at the students’ house, arrived on the scene and decided to take charge of my case.

Following an open diagnosis as my tests results were not ready yet; she restated her lecture’s verdict by prescribing me drugs for a severe case of toxoplasmosis only found in patients with immune deficiencies. Nevertheless, instead of responding well to the treatment, I only got worse. However, the worst was when I hurried back to the hospital in a helpless panic because due to some strange sensations caused by the fit-controlling drugs, I thought death was just around the corner. To calm me down, she said AIDS was neither different nor more severe than any other disease [1]; In fact, she told me, it was as if I had a brain tumour impossible to be removed surgically. By saying this, she placed my case somewhere between AIDS and a lethal, non-removable form of brain cancer. Since the results of my tests had not come yet, I faintly hoped that my case was not so severe and that I had something else.

Fortunately, for the sake of my mental health, I left Campinas, the city where UNICAMP is based, and went back to São Paulo, my hometown, and where my family and the doctors we trusted lived. At first, they agreed with their colleagues, especially about cancer, but they also believed in other more promising and less severe possibilities. Still, all of them agreed that my case required surgery. After the operation they sent whatever they had removed from my brain to be analyzed, and only after that did they close a diagnosis. To my relief, my hope came true, and I had neither AIDS nor deadly cancer. Instead, I had “something else”.

“Something else” meant neurocysticercosis, a disease caused by flatworm eggs. Although it can be deadly and impossible to heal by surgical procedures, it was not my case. Nevertheless, a brain surgery may cause permanent disability to the patient. To minimize this risk, the doctors were very careful. They left me awake during part of the operation so that they could ask me questions and from my replies differentiate the brain tissues from the cyst.  However, even so,  the operation left me with a permanent motor after-effect that although a minor one, would change my life forever.

I was relieved and grateful for being alive. However, I would blame that medical student from Campinas for that perhaps unnecessary and life-changing fright. Later on, though, I came to think: what if I had AIDS? And concluded: undoubtedly, she would have taken care of me and held my hand when my time on earth finally ended. Actually, I should have blamed her lectures instead as rather than abandoning me alone, they abandoned her as well. After all, they had let that young and unseasoned medical student solve a serious problem all by herself. Besides disgusting doctors, they had been lousy teachers as well.

Within her possibilities, she had been perfect. As a possible terminal patient, all I expect was to get attention from people that really cared for me rather than to be miraculously cured. Because of this painful process, I came to see death as universal and inevitable, as a natural fact, so that neither doctors nor patients can be untouched by it.

Sometimes I still get mad at it all and call the King of kings and Lord of lords, the Sod of sods and Divine S.O.B. However, thanks to it, I have thought about things we must let go. After all, what is life but a succession of symbolic labours and losses between real ones? If part of me died in that operation theatre, another one, unknown even to me, was born in that very same place.

[1] In 1992 there were not the drug cocktails that turn AIDS into a chronic condition.


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DOR E JÚBILO

R. C. Migliorini

DOR

Certa vez, uma atriz que teve um câncer de pele falou disso em entrevista. Disse que a doença logo diagnosticada havia formado apenas uma pequena mancha na pele. Felizmente, essa pinta foi retirada sem que, nem ao menos, uma pequena cicatriz tenha ficado para contar a história.

 

Ao falar do ocorrido, a atriz ficou extremamente comovida. No princípio, sua reação me pareceu sem sentido e exagerada. Contudo, refletindo melhor sobre o assunto, conclui que o que o insignificante para mim, havia sido muito sério para ela.

 

JÚBILO

É comum pensar que uma pessoa sem uma deficiência séria, doença grave ou situação socioeconômica adversa tem a obrigação de ser feliz. Afinal, pessoas assim, podem ter muitas atividades, algumas vezes, até mais vantagens que a maioria das outras. Então, por que se queixam?

Esse discurso me parece de uma tremenda violência, pois obriga a pessoa a calar seus sentimentos. Em última instância, a faz se conformar com uma situação desconfortável, ao sugerir que é “errado” se queixar. A pessoa tem que ser sempre feliz, como as princesas e os príncipes dos contos de fadas.

Vou ilustrar esse discurso com um exemplo pessoal. Eu me lembro de que logo após minha cirurgia eu peguei um ônibus, e não sei por qual razão, discuti com o cobrador. A sua reação não foi a de me ouvir, mas sim a de dizer pra eu não descontar a minha raiva, a minha revolta, ou sei lá o quê, nele.

Fosse realmente isso e ele estaria certo, pois ninguém merece ser tratado como saco de pancadas de ninguém. Mas ele queria, ou melhor, exigia e esperava que eu, como deficiente, fosse sempre feliz e cordato. Pior, que aceitasse seu atendimento ruim. Para ele, eu teria que aturar injustiças sorrindo; aceitar ser vilipendiado com complacência e me calar ao ser tratado de forma grosseira.

Em resumo, pessoas, doentes, acamadas, idosas ou deficientes são sempre “frágeis”. Por isso, não podem sentir raiva, nem se queixar. A contrário, devem ser naturalmente boas e nunca sentir dor, tristeza, frustração e, muito menos, reagir. Se o fizerem, serão logo taxadas de revoltadas.

 

CONCLUSÃO

Portanto, há que se respeitar a dor e o sofrimento alheios, bem como a própria. Porque, até onde sei, independentemente da “cara” de cada um, todos partilhamos de uma alma, de um coração e de sentimentos muito parecidos. Não se deve, portanto, comparar dor e, muito menos, impor felicidade.