GROUND ZERO 

My intention in this essay is to provide a conceptual starting point to the ideas

around which this book was written. I am aware that my motivation for writing this text

can be misunderstood by some people who may see this text as an exercise of self-

pity. Nevertheless, this is not the case, and if this impression is formed in the reader,

then it is due to a failure in reading the texts that besides following, add meaning to this

one. Therefore, I beg the reader to be patient, and read the whole book; since, as the

saying goes, “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 couldn’t 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 didn’t 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 him.

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’d had partial

convulsions that streamed either from the central nervous system, or from the

peripheral one due to a pinched nerve.

It made more sense to me, but even so, all the symptoms I was having just

proved to be right when I threw a party to celebrate my birthday. While I was buying

some drinks for the party, I talked to the bartender with the right hand over the counter,

and with the left one, which moved like a crawling spider, hidden behind my back.

Along the party, those hand attacks that had seemed funny and intriguing to me at first,

became so frequent and intense that I rudely left the party and ended up celebrating

alone in hospital; thinking about death, rather than about life.

I spent the night and almost the whole of the next day over there, and because

the doctors were certain now that I had a problem with the central nervous system,

they scanned my brain, and discovered a strange body in it that would probably grow

larger. Nevertheless, it was neither possible 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. Strange as it may be, the word verdict

instead of diagnosis better fits the described situation, since those doctors believed I

could only have an AIDS related disease. Continuing with their judgment and leaving

aside any ethical standards, they abandoned my case as they considered it already

lost, once my death was certain and imminent. Fortunately, a medical student who

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 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 hospital in 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

disease1; In fact, she told me, it was as if I had a brain tumor impossible to be removed

surgically. By saying this, she put my case somewhere between AIDS, and a lethal and

non-removable form of brain cancer. Even so, since the results of my tests hadn’t come

yet, I had a feeble hope that my case wasn’t so severe, and that I had something else,

as long as it didn’t place me between hell and high waters.

Fortunately both for me and my mental health, I left Campinas where UNICAMP

is and went back to São Paulo, my hometown, and where my family, as well as doctors

we trusted lived. At first, they agreed with their colleagues, especially about the tumor,

but they also believed in more promising possibilities. Still, all of them agreed that my

case required surgery; so I had it. 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 a deadly cancer. Instead,

I had “something else”. 

By “something else” I mean I had neurocysticercosis, a disease caused by

flatworm eggs. Although it can be deadly and impossible to heal by surgical

procedures, it wasn’t my case. However, my brain operation, even if it was successful

and very well performed (the doctors were very careful, and left me awake for a part of

it so that they could differentiate between the brain tissues and nerves from the cyst), it

left me with a permanent motor after-effect that although a minor one, would change

my whole life.

1 In 1992 there weren’t the drug cocktails that turn AIDS into a chronic condition.  

 

Although I was relieved and grateful for being alive, I blamed the medical

student for my unnecessary fright. However, I thought: what if I had AIDS?

Undoubtedly, she would’ve taken care of me and held my hand when my time on earth

would have finally come to an end. In effect, her lectures rather than she were to blame

for having abandoned not just me, but both of us. After all, they’d let that young medical

student solve a serious problem all by herself. On the other hand, within her

possibilities, she had been perfect since her aptitude agreed with terminal patients ’ 

expectations: to get attention from people that really cared for them rather than to have

the grace of an impossible cure. Perhaps because along their illness they came to see

death as universal and inevitable, as a natural fact of life, so that neither doctors nor

patients can be untouched by it.

Well, certainly, a part of me died after this experience. Sometimes I still get mad

at it, and I call the King of kings and Lord of lords, the Sod of sods, or the Divine S.O.B.

However, thanks to this experience, I have thought about things we must let go, or in

our frustrations in opposition to the gains, gifts and rewards we also receive: what is life

but a succession of symbolic births and deaths between a real birth and a real death?