brasileirinhas dvd

AZT 01 – Portraits of AIDS in Brazil
Brazil. Ministry of Health © 2009.
All rights reserved. Partial or total reproductions of this work are permitted as long as the source is cited and they are not
intended for sale or any commercial purpose. The technical sector is responsible for copyrights of the text and images. Full texts
from the Ministry of Health’s institutional collection can be accessed at the Ministry of Health’s Virtual Library:
http://www.saude.gov.br/bvs
Production, distribution, and information
MINISTRY OF HEALTH
Secretariat of Health Surveillance
Department of STDs, AIDS and Viral Hepatitis
SAF Sul, Trecho 2, Block F, Torre 1, Ed. Premium
Brasília, DF 70070-600, Brazil
e-mail: [email protected] / [email protected]
Homepage: http://www.aids.gov.br
Health Hotline – Ask about AIDS: 0800 611-997
Production and Execution
Communication Division of the Department of STDs, AIDS, and Viral Hepatitis of the Ministry of Health
Concept
Myllene Priscilla Müller Nunes
Dario Almeida Noleto
Text
José Rezende, Jr.
Editing
Telma Sousa and Angela Gasperin Martinazzo
Translation
Martin Charles Nichols
Graphics and Layout
Masanori Ohashy
Idade da Pedra Produções Gráficas
Illustrations
Taty Fonseca (cover)
Yuri Garfunkel - www.sopagrafix.com
Luciana Facchini Noleto
Masanori Ohashy
Summary
3
Foreword
5
Alice’s war
8
Highlander meets the Lone Ranger
11
It is only over when it finally ends
14
The strange message of the Book of Job
17
Doctor Condom’s fight against AIDS and prejudice
20
Wally, wherever he may be
23
Live, die, embroider
26
Her life would make a good movie
29
On the long road of life
32
The world of 2020
35
The plucky fighter who combats two viruses at a time
38
Daiênni’s Little World
2
Foreword
At 51, Eduardo Barbosa considers himself young. He has a youthful smile and
vigour, but when the subject is his encounter with the virus that terrified the world,
his life strongly resembles the stories told in this magazine. In a wide avenue in São
Paulo Eduardo felt an overwhelming urge to get out of the car and burst out crying. It
was his first reaction to hearing from the doctor that he was HIV positive, a death
sentence that would probably be executed within a very few months. After his initial
despair, the youngest son of Olga and Oswald Barbosa confided to his brother that he
had AIDS. He received a warm embrace and the certainty that he would not be
entirely on his own.
Eduardo saw the disease as a chance to show who he really was, not only to his
family and friends, but to himself as well. He revealed his sexuality and sought help
from an NGO, the Incentive for Life Group (Grupo de Incentivo à Vida – GIV). There he
met with the solidarity that was needed to face the virus he carried and the AIDS
epidemic itself. He had a lightning ‘career’ in that institution and within a year he
became director – due to his own competence obviously, but also due to the high
turnover of directors, because many died before completing their mandate.
A newspaper delivery boy at 13, a seminary student in his teens and a
philosophy teacher in adult life, Eduardo Barbosa embraced militancy and defied the
death sentence that he carried inside him. Today, as Assistant Director of the STD,
AIDS and Viral Hepatitis Department, he is in a position to influence public policies
directed at reducing prejudice and consolidating victories for people living with
HIV/AIDS. In 2009, Eduardo requested the Department’s social communication team
to prepare a publication that would give voice to people living with HIV and those
that live with them; ordinary people like us, but who often are reluctant to speak
about their serology for fear of exclusion and discrimination. They live their lives with
the virus alone.
The AZT magazine gives these people a chance to speak out and be heard, with
all their complexities, contradictions, joys, sadness and passions. Writer and
journalist José Resende Jr. has contributed his skills to tell a little of the background of
each one of the 12 people selected in a literary award competition entitled Vidas em
Crônica (Lives in story form) run by the Brazilian Ministry of Health.
They are men and women protagonists of very recent histories, still fragmented
and disperse, and they show that in this world, everything is intermeshed. They all
have one thing in common: a powerful love of life; accumulated wisdom of vast
importance for an understanding of what it is really like to live with AIDS. They are
people who in spite of often being bound by a particular circumstance, like Eduardo’s,
manage to enrich the social debate by transforming their virus-afflicted condition into
a struggle that redounds in benefits for all.
The reader will not come across any AIDS statistics or charts in these pages, but
instead, living experiences that will be shared as the story unfolds. The revelation of
these life stories can help us to examine our own inner fears and prejudices, to shake
off immobility, and contribute positively to changing reality.
Mariângela Simão
Director of the STD, AIDS and Viral Hepatitis Department
3
4
Alice’s war
In the beginning was the end – and the end often came within 24 hours. The
isolation corridor was practically a waiting room for the cemetery. Instead of
prescriptions to save lives – because there were no medicines to save those lives – the
doctors made out death certificates, sometimes as many as three in a single day. The
nurses hardly had time to get to know the patients who arrived shockingly thin and
ashen-skinned; they could often be dead by the next day.
Nurse Alice Belém compares those times to living in a war; more precisely, a
war in which each day another battle was lost. Alice stepped onto the battlefield for
the first time when she was 24 years old, taking on a mission that almost nobody else
wanted: easing the agony of patients admitted to the recently-created AIDS Unit at
the Clementino Fraga Filho University Hospital attached to the Federal University of
Rio de Janeiro. The isolation ward functioned in the corridors of the fifth floor – the
dreaded “death row”.
Added to the risk of exposure to a disease whose transmission mechanisms
were not completely understood, Alice and her colleagues suffered from prejudice
similar to that directed at the patients themselves. When the nurses from the fifth
floor got in the elevator, other people moved drew back into the corners or got out as
fast as they could. Worse than that however, was the terrible feeling of impotence, of
the uselessness of the work: looking after patients who needed care but who might
well no longer be alive when their next shift came around.
The speed and the fury of the virus were not the only obstacles to a more
humanized treatment. As a precautionary measure, doctors and nursing staff used
protective garments, hats, masks, goggles and two gloves on each hand. Alice cannot
forget the general feeling of relief when it was scientifically proven that you could not
get AIDS just by shaking hands. From then on, doctors and nurses could at least touch
their patients and the patients could look into the eyes of those that were trying to
bring them a measure of comfort.
Then came AZT, capable of prolonging lives, and afterwards the
antiretrovirals gradually began to overcome the inevitability of death. Somewhere
along the way however, there was a little girl. A patient 12 years old who appeared
one night when Alice was on duty and ended up entering her life for ever. Up until
then she had only ever treated seropositive adults and she found the presence of a
child very disturbing. She was even more surprised at the patient’s first gestures; a
smile and a hug. Then came the words “Are you the nurse who is going to look after
me?” At that moment a friendship was struck up that was to last six months, and then
in a sense, an entire lifetime.
The girl was suffering from Candidiasis. At first it showed itself in the form of
the usual discomforting white plaques in the mouth (Thrush). As time went by
however, the opportunistic infections began to take over the entire gastro-intestinal
tract. Alice, who had already suffered the loss of so many patients to the virus without
shedding a tear now started to burst into tears every time she got home from work.
The little girl got worse by the day, but her nurse, who had only now begun to cry
over patients now began to feel hope for the first time as well. She put her faith in an
unbeatable combination: God and AZT. At first she prayed that the girl would not die,
but as she gradually grew worse, she started to pray that at least the girl would not
die while she was on duty.
5
But the girl did die, and exactly when Alice was on duty; it was as if the girl
had waited for her to say goodbye. Alice had call up all her courage to see it through:
first, as she watched life gradually draining out of the fragile, little body while she
held her friend’s hand for the last time, and later she needed more strength than ever,
for it was Alice that had to prepare the body and deliver it to the mother.
Alice is still working where she always did: on the 5th floor of the same
hospital, only now it has been turned into a ward for infectious diseases in general.
Patients with AIDS are no longer isolated as if they were weapons of mass destruction
in the form of skin and bones. The nurse still cries whenever she looks at the little
girl’s photograph, which the mother sent to her as a way of saying ‘thank you’, but at
the same time she cannot help feeling glad about the way things have changed over
the last 24 years. At first seropositive patients, weak and ugly, were only admitted to
die; but now she cannot help noticing that many are admitted still in good shape and
leave the hospital on their own feet and get back to leading their own lives. Formerly
most of them were admitted clutching a bible and praying for a miracle that never
happened; now they celebrate the miracle of the cocktail and thank the
pharmaceutical guardian angel that even allows them to run a little wild now and
again.
Alice knows however, that the war is not over. Quite the opposite, she thinks
that AIDS is even worse than a regular war, because after a war is over, peace
prevails, but with AIDS there is never even a truce. It has stopped being a disease that
seemed to only affect homosexuals and now has no restricted preference as to its
victims and is advancing among women, especially poor women – who do not have
the courage to negotiate condom-use with their husbands and who for that reason
have now become the most frequent inhabitants of the 5th floor.
On the other hand she rejoices in the effective reinforcements added to the
combat forces and the improvement of the weapons used against AIDS that are
reducing mortality, heightening the quality of life and achieving other important
advances. To Alice, one of the most important achievements has been the drop in the
rate of virus transmission from mother-to-child. That helps her to catch her breath a
little between one battle and another: after all, children were not meant to be born
just to die in a war.
6
7
Highlander meets the Lone Ranger
The site of those who hunt for men is the perfect mirror of what love means in
times of HIV. The navigator has two routes to choose from: one leads to seronegative
men, the other to seropositive men. Those that choose the latter option are not
interested in the colour of eyes: it is more important to know the viral load readings
of the potential partner – a polite way of checking not only his general state of health
but also his probable appearance in the present round of his fight against the virus.
There are no formal restrictions imposed but generally each group hunts in its own
territory and that is why Highlander finds it odd that the Lone Ranger declares
himself to be seronegative and 23 years old but seeking a seropositive partner.
There is a tremendous difference in ages: while the Lone ranger is only 23
years old, Highlander, has already spent 23 years of his life fighting against AIDS. The
attraction is mutual. Their conversations, tapped out night after night, far into the
early hours, become increasingly intimate. One day the Lone Ranger discloses his
secret and the two navigators finally meet in a strong physical embrace. In his arms
Highlander has a handsome young man. The Lone ranger sees before him an
experienced man who is also good-looking. But this is not an embrace of passionate
love; quite the contrary, it is passionate in another sense: it is the passion for life that
unites these two men hugging one another in a street in the centre of Porto Alegre.
From there they go on to a consultation with a doctor that was scheduled by
Highlander for the Lone Ranger. Their friendship does not transform itself into love,
but thanks to his newfound friend the Lone Ranger finally makes up his mind to fight
the virus that he was trying not to acknowledge that he had even to himself.
Highlander is Gerson Winkler. The nickname is a reference to the immortal
character played by Christopher Lambert, in a film of the 1980s: a warrior that
crossed centuries of history. Gerson has spent almost half of his half-century
existence battling against the virus and living through the different phases of the
history of AIDS. In 1986, when he was diagnosed, the only thing that was certain was
death, and it was imminent. Gerson’s partner was the first to show symptoms and he
died just one year later. Gerson was by his side right to the end. After that he sold
everything he had and set off to travel for as long as it took for death to take him. But
death did not come and as it stayed away Gerson became an activist and dedicated
himself to the fight against AIDS. He was no longer struggling just to keep himself
alive but for the lives of all the others condemned to death. He helped to found the
GAPA and later on became the coordinator of the STD/AIDS Programme in Porto
Alegre. However he did not entertain any false hopes. He knew that he would not see
his two daughters grow up, much less live to see his grandchildren.
Death did not come but Herpes infection did in 1992 and it almost killed him.
And there were deaths, many deaths of others that he accompanied in person in the
notorious 6o Sul, the ward known as ‘death row’ in the isolation block of the Hospital
das Clínicas. There, friends, relations and boyfriends shared their real pain and empty
hopes.
Prior to that, for four years Gerson refused to take any kind of medication until
finally, one day he experienced a tremendous desire to live and he started trying
anything and everything in an attempt to cheat death: spiritual healers, taking creosol
and even the liquid used for revealing photographic film. And there were also a series
of humiliations like filling out the medical case charts: “Are you a homosexual? Whom
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did you have sex with? How many people have you had sex with?” So there was a new
lesson to be learned: it was not just an infection caused by an unbeatable virus but it
also involved facing up to taboos and attributions of guilt.
And then the first medicines started to appear, a slender hope that might
prolong life. Then there were the patchwork quilts or collages made in memorial of
those that had died of AIDS and they were to travel the world to tell about the lives
behind the statistics. Gerson helps to unfold the quilts that come to be displayed in
Porto Alegre and he cannot get away from the thought that one day; for him not to be
transformed into a mere statistic, someone will have to make a patchwork quilt in his
memory and friends, daughters and relatives and maybe some former lover will
decorate the quilt with fragments of his life.
Until the day came, long after, when he looked at himself and declared in a
tone somewhere between matter of fact and determined: “Death is not going to take
me so soon”. Then came hope in the form of the cocktail almost like an elixir for long
life, which he first heard about at the 11th International AIDS Conference in
Vancouver, Canada. The news exploded in a wave of euphoria that Gerson described
as “an unforgettable shudder!” The day the Earth stood still.
But the cure has still not been found. The disease that supposedly “no longer
kills” is still killing people, either because the virus is changing and becoming more
powerful or because some peoples constitutions are more fragile, or because of lack
of information and misinformation even today at the height of the information era.
Gerson continues to lose people that are dear to him but he does not give up. He has
had cancer twice. His daughters have grown up and given him grandchildren. He has
taken up his university course once more and adopted a little boy a little before his
second partner departed this life.
Life goes on. People are born, die, survive and continue to get infected – some
of them when they are still young and beautiful like the Lone Ranger; but he at least is
no longer alone in the world.
9
10
It is only over when it finally ends
This is not a sad story as the main character hastens to announce. It is a story
full of sad moments but with a happy ending. No, he corrects us, it is a happy story but
without an ending because it is not over yet. This is a story so full of sad episodes that
it could easily be part of a TV soap opera. And in fact it did become part of a soap that
is, it came on right after one episode the soap Viver a Vida (Live Life), in the form of a
statement made by the main character of this story. And it helped to raise the spirits
of many TV viewers. That is because it is a story of overcoming severe adversity. It is
because our main character never lets up on his good humour. He can joke about
cancer in a chemical-therapy waiting room! And the audience, all of them with cancer
– dies laughing! That is to say everyone laughs like hell but nobody dies because
laughter is the best medicine.
But let us take up our story. We are back in 1985 and our character – Beto
Volpe - has just found out that a colleague at the bank where he works has AIDS. The
news comes as a shock but Beto carries on enjoying his wild lifestyle at full blast:
night after night in the park, drugs and more drugs, partner after partner, and no
condom use. Four years later he decides to take the HIV test. Surprise: non reactive!
The guy who had been having sex with dozens of partners did not have AIDS!
Thankful to have been spared by Divine providence he decided to always use a
condom from then on. Until one day the love of his life appeared. And to prove how
much they loved one another the lovers stopped using condoms. The sad part of the
story comes in when love is over. Or to be more precise when our hero starts having
the same bad dream every night and visualises himself in a meeting of bank workers,
just a pile of skin and bones with hollow cheeks… Beto takes the test again. Surprise:
reactive! The guy who had been in a loving partnership and having sex with a single
partner only – but without a condom – now had AIDS. In 1989 AIDS did not just mean
‘you are going to die’ it practically meant ‘you are dead’.
Death however does not drop by in person, he sends in his most formidable
representatives. It is 1996, a CD count standing at 6, the result of a spree on drugs to
try and handle the death of so many friends… “Miss, are you sure there aren’t some
zeros missing there?” There weren’t. And then they came, one after the other:
pneumonia, three bouts of neurotoxicity, a generalised Candidiasis infection, a drop in
bodyweight from 68 kg to 34 and with the classification: ‘terminal patient’. Beto hates
that label so much that he has put it into the title of his book of memories - Terminal
means Bullshit!
To Beto Volpe, the game is only over when it has ended. And he survived with
the help of the cocktail. But his legs and arms became thin as sticks and his cheeks
sunken and gaunt. Then came depression, no wish to leave the house, an immersion
in a new and positive drug called the Internet, which was then in its early days. Then
came the virtual chats with other seropositive people, and the wish to set up with
them an NGO. From then to now ten years of militancy have gone by and they have
renewed his will to live.
Beto found out that he was suffering from lipodystrophy, a side effect of the
medication. That is why his face was so hollow and old-looking. He decided to be a
guinea pig for facial implant surgery and recovered his youthful good looks.
Happiness. Then his legs began to hurt, the head of the femur was suffering necrosis
11
from the high levels of fats in the bloodstream. Then came the Painful part, surgery on
the hip-joint, bone fractures due to osteoporosis, installation of a plate, removal of the
plate, implantation of head of the femur and hip-joint prosthesis, a brief period of
relief from pain, milk, wheelchair, walking frame, walking stick
Beginning of 2003: Lymphomas in the medulla, neck, lungs, liver, retroperitoneum and groin. Chemical-therapy and the jokes about cancer, 27 kg loss of
weight and then the cancer was cured. But the series of misfortunes was not over:
knocked down by a motorbike that mounted the pavement, fractured hip, second
prosthesis implanted, then a malignant cancer in the rectum, and another, surgery
and then daily sessions of radio-therapy which have caused side effects that are still
felt.
In this interval, the worst event of all, the suicide of his youngest brother.
People coming to the funeral and wake of Mr.Volpe’s son and being shocked as if they
had seen a ghost because the son that everyone thought was dead, was alive and the
dead son was Mr. Volpe’s other son, who in the natural course of events should have
had many years of life ahead of him; and the mother holding the surviving son’s hand
and murmuring “how ironical, how ironical”.
Beto attributes importance to every one of his afflictions, because the beast
that came to devour him has in fact become the source he draws his energy from to
face up all those difficulties. Because it so happens that life is larger than AIDS. He
feels that if he had died 20 years ago nobody would have missed him but that today
he has made his mark on the surface of the planet by helping other seropositive
people and doing good. His health is still very fragile but stronger than it was before.
Beto Volpe loves Beto Volpe, and he does his best to extend that love to his fellow
man. Because, he declares, “love that is pent up turns into cancer”.
And so our story ends, and this is a happy ending even though it is only a
provisional ending because the story is not over. It has not terminated because as
Beto Volpe would say “Terminal means Bullshit!”
THE END (so far)
12
13
The strange message of the Book of Job
July 20, 1989: Edney is sitting in the front room at home in São Mateus (State
of Espírito Santo). He is watching TV but not really paying much attention when
suddenly a news flash interrupts the programme: the actor Lauro Corona has just
died of AIDS. But instead of the actor’s face Edney imagines the face of his brother
Edson whom he once carried in his arms as if he were his son. But Edson does not
have AIDS. Or does he? Could that be the explanation for his repeated bouts of
pneumonia? Edney is a fervent Evangelist and interprets his vision as a sign from
heaven; over the next two years it is as if he were preparing himself for the piece of
news that finally comes in form of a phone call from a doctor friend of the family’s:
Edson has AIDS. So it was a sign from heaven after all.
Edson was in line to be the fourth tragedy in a family that had never lost its
faith in spite of all the trials that came to test it – just like Job the faithful patriarch in
the Bible. Monoel and Dorvalita had had nine children. José died just seven days from
the seven-day fever. Eulina when she was just over a year old died from measles. Erni
died tragically when he was 3. Their father used to keep petrol in the house for the
motor and kerosene for the lamp. One night when he was very tired he took the
wrong fuel. The lamp exploded and Erni died from the burns. Manoel carried the
weight of guilt with him to his dying day but like the good patriarch Job, he never
flinched from his family duties. When he decided to turn the house into a simple little
guesthouse he had ‘Happiness Guesthouse’ painted on the façade.
After Erni’s death the couple stopped having children for nine years when a
new cycle of begetting children began. Edney was the youngest until he was 6 years
old when Edson was born, the only one that needed help to be born. The midwife was
unable to handle the birth and Edney was sent off to fetch Dr. Pericles. When he got
back he stood watch outside the bedroom door peeping through the keyhole until the
adults found him out and blocked his view.
Edson was a beautiful baby, the most beautiful baby Edney had ever seen in
his six years of life. He was born with so much hair that his mother had to cut it to
keep it from getting in his eyes. He became Edney’s little doll the more so because he
had to look after the baby and keep it wrapped up. It was actually the clothes that the
baby was wrapped up in that minimised the effects when Edney fell down the stairs
once, with the newborn baby in his arms.
The two of them grew up very close; they were more than brothers, they
were friends. That was why Edney got so upset when he received the sign from
heaven in the form of the news flash on TV. That was why for the two years after that
up, until the moment of the diagnosis, it was as if he were living with the sword of
Damocles hanging over him.
The doctors were emphatic: Edson had very little time left to live. Edney and
the family renewed their faith in prayer and in the medicines. It seemed they were
being tested once more. Actually they were being doubly tested because the youngest
scion of the family had turned out to be a homosexual and therefore in the light of
their religious doctrine, he was a sinner. Religion however, does not only point a
finger at the sinner, it also teaches us that we need to love the sinner. Edson had
decided to leave the church but he was loved as much as ever. He defied all the
doctors’ prognoses and lived on for days, months, years, decades.
14
Today he is alive and well He has suffered the side effects of the medicines
that have affected his spleen and his liver and made it difficult for him to sleep. He
abandoned the treatment three times, but went back to it because of Edney’s
insistence. Several times he was at death’s door; the last time was when the sarcomas
broke out. The only salvation for that were medicines that had to be imported from
the United States or Europe at a cost of: US$ 2,500 a month. The family filed an action
in the courts but it looked as if the disease was progressing much faster then the legal
process. Edney proposed that they should sell the house in order to pay for the
treatment but Edson would not accept that: “If we do that we will no longer be
helping people that cannot afford to pay for it and that depends on my victory in the
courts to open the way for them”.
The medicines came through in time and Edson did indeed open up the way
for those unable to pay for them. He has become a voluntary worker going from home
to home to visit seropositive people. He talks to them, inspires them with confidence,
prays with them and helps them to apply the injected medicines. Edney often goes
along with him on those visits.
Edson is currently living with his partner. The church has taken him back and
in exchange for that he and the man he loves live in celibacy. On the other hand the
pastor has stopped talking about AIDS as a ‘punishment’ inflicted on sinners and
instead prefers to use milder terms like ‘consequences’.
But if it is true that life and suffering teach us lessons, what lessons has Edney
learned from these two decades living on the sword’s edge? He has learned to accept
differences and love those that are different. Today he hardly passes judgment at all,
and when he does, it is more in the sense of reflecting, understanding, absolving. He
knows that the price for that has been very high and that his beloved brother has
actually paid the greater part of it, but he also believes that all of them have grown as
people in the face of adversity, they have all become better people.
Moral of the story: After years and years of going to church and reading the
Bible Edney has finally learned to love his neighbour, and what is more, the person
who taught the real meaning behind Christ’s words was actually a man who loves
other men and who was called a sinner because of it.
So it seems to be true then that God moves in a mysterious way, his wonders
to perform.
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16
Doctor Condom’s fight against AIDS and prejudice
Towards the end of the 1980s the state of Sergipe experienced a strange
migration phenomenon: men who in earlier years had left to seek a better life in São
Paulo began to drift back in order to die at home. In their baggage they brought a new
and fatal disease. That reverse migration brought face to face the then unconquerable
HIV virus and a young doctor who had preserved the habits of a former era by visiting
his patients and clinging to the belief that medicine was a way of helping one’s fellowman. The trajectory of the virus is widely known, that of Doctor Almir Santana, much
less so. Before continuing it must be said that the struggle he waged against AIDS
endowed the doctor with two nick-names created by raw, unmitigated prejudice –
‘Doctor Whores’, and ‘Doctor Gays’ and a third, which he is quite proud of: ‘Doctor
Condom’.
Fresh out of medical school Almir Santana went to work with the prevention
and treatment of sexually transmitted diseases in the brothels of the Santos Dumont
neighbourhood, one of the poorest in the city of Aracaju. When he began his work,
60% of the prostitutes had syphilis. Two years later that rate had fallen to 20%. A
one-nil victory for Doctor Condom. In 1987, however, a far more powerful opponent
entered the lists in the shape of a nursing assistant who had formerly emigrated to
São Paulo and was now back in Santa Luzia do Itaí, seriously ill. Apart from the
disease, Sergipe’s first AIDS patient had to face another enemy who was to challenge
Doctor Condom for the rest of his life: prejudice. All the town of Santa Luzia do Itaí
wanted to do, was to get of its scion, made notorious by the media as the state of
Sergipe’s “gay plague” victim, as quickly as possible. At the primary health care unit
they even burned the chair that he had sat on.
Almir Santana was sent to Santa Luzia and found himself face to face with
death – death had the features of an extremely emaciated man debilitated by
tuberculosis and constant diarrhoea. The Doctor however was not afraid; intuition
and experience led him to believe that the new disease was some kind of STD and that
no one would be contaminated by simple contact with the victim. He decided to take
the patient to Aracaju. It proved to be an impossible mission, no hospital would admit
the patient. The nursing assistant died in less than two months. So Doctor Condom
had lost the first round but that defeat made him take up the challenge once and for
all and he promised himself: “I will make sure the next patient gets admitted”. The
next patient turned out to be a hairdresser who had also migrated to São Paulo and
now returned to his hometown of Itabaiana with the virus in his baggage. Almir
Santana managed to get him admitted to hospital in Aracaju but he was extremely
disconcerted by the fear and ignorance that reigned among the professional health
staff. Some flatly refused to handle the patient; there were some who feared that they
might become infected if they were bitten by a mosquito that had previously bitten
the patient.
Nevertheless, the mere fact of managing to get the patient admitted was a
considerable step forward. Others joined in. Doctor Condom was no longer waging a
solitary war. Almir Santana, now Manager of the STD/AIDS nucleus for the state of
Sergipe began to give capacity building courses for doctors and nursing staff and it
did not take him long to find out that the fight against AIDS calls for more than just
well qualified professionals – it calls for good human beings.
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Meanwhile, in the other corner of the ring, prejudice was getting stronger.
Almir Santana closely accompanied one case of a businessman whose wife, on hearing
that her husband had become infected through a homosexual relationship said: “From
now on Doctor, you look after him; when he dies you bury him”. On the day of the
funeral the Doctor made a last effort. He called her from the cemetery to inform her of
the death. The woman was unmoved: “You look after the funeral doctor and
afterwards send me the bill”. There was not even anyone present to carry the coffin,
only the doctor himself, the gravedigger, the funeral parlour’s driver and a passer by
that they called on to help. On that day the doctor broke down and cried and almost
decided to give up the cause.
Other deceptions came along: a poor woman who made her sick daughter
sleep in the chicken coop; the rich couple who alleged that there was not enough
room in their huge apartment to accommodate their seropositive son. Prejudice did
not spare the doctor either, he was obliged to close down his private surgery because
the stream of patients gradually dwindled away. Some were afraid of being
contaminated and others did not want to be mistaken for “Aidetics”.
In compensation however, Doctor Condom achieved a considerable victory;
Sergipe became the first Brazilian state to make antiretroviral medicines available
free of charge. As if that were not enough, he got hold of an old red bus and converted
into a travelling auditorium, which he used to give lectures. After that he invented the
“Condommer”, a car got up to represent a condom whose fame eventually spread far
beyond the borders of the state. If you do not come across the car you may have a
chance to come across Doctor Condom in the streets, where he always walks with a
large stock of condoms in his pockets and bags. He has even been approached by old
ladies asking for condoms for their grandchildren and on other occasions people have
come up to him just to express their appreciation and say that they remember him in
their prayers.
At moments like that Doctor Condom has the feeling that he is not only
fighting the good fight, but winning it.
18
19
Wally, wherever he may be
“God is going to throw a huge celebration I when I get to heaven” smiles
Wally as he gets ready to go to the party in heaven. He would like to get there looking
good, looking better than ever, because, after all it’s not every day that you are invited
to a party in heaven; but the sickness will not let him. Wally is dancing the last steps
of his long dance with death. The flirtation has been going on for three years now,
Death insisting, Wally resisting, believing that the cure will be found before death can
take him and that on the day it is found there will be a huge Woodstock all over again
and everyone will have sex with everyone else, without fear and without sin. But now
the end has come, Wally is reluctant to go, but if it is inevitable then he wants to go as
if he were going to a party. Let there be music and handsome men and drinks,
because in the last few years he has not been able to drink, and let it be nighttime
because he is full of fond memories of those nights that lately he has not been able to
liven up because of the sickness and the treatment. And let it be true that God is gay
or at least a sympathiser of the gay cause and that the good people that have gone to
heaven really are good and have left their prejudice behind on Earth, because Wally
has spent his whole life fighting against prejudice and now it is time for a rest from
that, or rather, now it is time to enjoy the party.
“And you, who have not been invited, you can stay back here and pay for your
sins, right?” he teases. His friends smile, because Wally is like that, he makes you
smile even when it is really time to weep. Among those that are smiling and crying is
a young psychology student called Dionnara, whose admiration for Wally was
conceived on the very day she first met him. The two of them meet every day to talk
about everything: literature, music, cinema… life. Wally has his own way of
conducting his life especially the complicated parts. That is what helps him to stave
off the insistence of death.
When Wally discovers that he has the virus, it is his friend who seeks for
information because they know little about it. She goes to the doctors and finds very
little information and much prejudice. Some of them want nothing to do with the ‘gay
plague’ or that thing that ‘queers’ get. So Wally and Dionnara decide to face up to the
evil trio of HIV, prejudice and lack of information. The lack of information is
perturbing. And as if it were an antidote to the lack of information Wally’s Tea Party is
born, and takes place every afternoon at 6 pm in Wally’s home in Niteroi. Among the
guests are fellow patients from the wards of the São Pedro Hospital; at the beginning
solitary frightened individuals. They talk about sex – “What now, should I have sex or
not?”, “How do you put on a condom?” –, there are exchanges of information, all
dream of a cure and discuss life and death – the finiteness of life and death always
lurking in ambush. At the beginning they were a group of no more than a dozen
people, disappearing one by one as death claimed them, but Wally’s tea party
survives, becomes an ‘in’ event until it spills out onto the street and a hall for has to
be hired to accommodate it. And then doctors start to appear there, good doctors who
never looked at AIDS as some kind of ‘gay men’s problem’; the kind of dedicated
doctor that goes from house to house seeking out those patients that have refused to
take the treatment. (Later Dionnara will realize that what she actually witnessed was
the birth of a public policy to combat AIDS).
Soon Wally’s afternoon tea party becomes dinner parties, and later cultural
evenings; and patients invite their friends and relatives and soon the general public
20
joins in so that those that are not familiar cannot tell who is gay from who is hetero,
who has the virus from who does not; and that is a healthy mix because it helps to
break down prejudice – even though in the streets of Niteroi you can still sometimes
hear people hiss “damned people” at Dionnara and Wally.
Wally, Dionnara and other friends set up the Support Centre for People with
AIDS – CAPA. Willy immerses himself in the work as a volunteer while he waits for
the cure to be found. He watches distraught the way that friends who have accepted
the classification of their cases as “terminal”, despair and give up the struggle. Wally
never tires and does not want to end the struggle until it is clearly no longer a
question of struggling or not struggling, tiring or not tiring. It is time to die. Before he
dies he makes his friends swear to keep the CAPA going after his death. Then he
teases his boyfriend, his partner right to the last: “Be sure to date a lot, alright
because I am going to get myself the best looking queen in heaven”. He smiles and
arrives at the party arm in arm with the best looking queen in heaven It is going to be
a red-hot night, and the night is only just beginning.
***
Dionnara Castro graduated in Psychology and took part in the movement to
put an end to asylums for the mentally ill, she has worked in poor communities and
with people with special needs as well as in the programmes for providing protection
to witnesses and fighting the trafficking of human beings. She is presently a
consultant to the Giovanni Falconi Institute for the Fight against Trans-national
Crime. She has published two books of fiction, Cartas de Kosovo and a children’s book
Clara, a menina das pernas bombachas. She was a winner of the “Vidas em Crônica”
competition where her short story Risco, received an award and another received a
mention: Pós-Feminismo. Both texts were inspired by her experiences among the
habitués of Wally’s afternoon tea parties.
Dionnara declares that her work has always been to transmit with simplicity
all that Wally taught her. Above all Wally taught her to inject poetry into life and
eternalise other people inside ourselves, which is why it is as if Wally were alive. “I
speak to him every day,” she declares. And should her interlocutor not resist the
temptation and ask her “Where is Wally then?” Dionnara just smiles, and look all
about her as if to say by her silence and her gesture; Wally is everywhere.
21
22
Live, die, embroider
Outpatient Clinic. Worried woman. The doctor hands her an envelope. The woman
tears open the envelope, reads the contents and is immediately seized with despair.
Room with a peer counselling group. The woman who received the diagnosis enters
a room where a group of people is seated on chairs. Each one tells his own story. The
spotlight rests on one empty chair.
Room with peer counselling group. The woman who received the diagnosis enters a
room where group of people is seated on chairs. Each one tells his own story. The
spotlight now rests on two empty chairs.
The woman who opens the envelope and falls into despair (in the sketch
outlined above) is not an actress. She has agreed to play herself in the play. One
certain day it was she, educator Nair Brito, who opened that envelope and fell into
despair.
The men and women that make up the supposed peer counselling group
represented in the play are actually telling their own real-life stories. When the play
was over and the applause had died down each character reverts to being a person
but continues to be what they have been acting out during the show.
The empty chair metaphor is based on fact; and if the chairs are left empty
one by one in the course of the play’s run, it is because they do in fact get left
unoccupied as time goes and the virus kills off the actors, all of whom are
seropositive. So the group that started off with a cast of 14 actors had to stop because
there was not enough cast to continue. At the end only four survived.
What is it then, that makes someone act out on the stage the real suffering
they feel so keenly? Maybe it is a search for answers that only art can give. Maybe it is
an attempt to hold onto some kind of optimistic message. But what optimistic
message could there possibly be at the beginning of the 1990s – a time when each
torn envelope delivered a death sentence? The only possible one for us: condemned
as we are to a more certain death than others, but who are not dead yet – let us make
every shred of remaining life worthwhile.
That is what the woman who tore open the envelope in 1992, and saw written
on the paper inside the word “Reactive”, and who for a tiny of fraction of a second
wanted to believe that “Reactive” meant everything was fine, that her body would
‘react’ to any kind of threat, has done. Nair is still tearing open envelopes in the play
knowing that she may die that very night in the middle of the presentation, leaving
yet another empty chair, but as long as she does not die, then her last wish will be: do
not let me waste my life.
When she realised that she did not have much time left she started to travel to
see places she had never visited before because she could never find the time. It was
time to get know them. She did not take a camera along any more, stopped printing
out memories on photographic paper that she might not have the chance to look at
later on. She began instead, to record things with her heart, her eyes took in every
inch of the landscape because she knew she would never pass that way again. She
learned to sense the temperature, the light, the underlying rhythm of things, people,
animals. She learned to embrace them all with body and soul, as if each embrace were
the last.
23
Above all she learned how to be intense and entire at every moment. She
abolished the past and the future, nothing had existed before and nothing would exist
afterwards, this is the moment, it is essential to be part of this exact moment, to be
the moment itself. Here is everything there is, there is no ‘there’, the universe is
contained in this instant of time, in this immediate space. Life begins and ends every
fraction of every second, death and life are one, and this is a good place to be, because
everything begins and ends and begins over again, right here.
But fear came creeping in too. Christian guilt, fear of hellfire, the burning, the
demons, eternal punishment for the pencil sharpener stolen form a classmate when
she was six years old, for an ant she had killed some day or other because we do not
notice the ants that we kill, they are such poor tiny creatures, but it is sure to be a sin
to kill them even without meaning to.
Nair has not gone hell however. Nair has not died. She has lost loads of
friends to the virus; once she shed her tears at two funerals on single day. She has
been at Death’s door on three occasions – the last time, which was the worst of all she
was kept alive on forced breathing machines and seemed to be on a road with no
return. But she not only managed to survive, she also opened up the way for others to
do so too. She had been to an international congress where she had heard about the
new cocktail of medicines that was saving lives. She came back from it full of
enthusiasm: now it was no longer just a matter of waiting for death. Nevertheless on
her return, she was extremely ill. She filed a legal action in the courts to gain access to
the medicines. Her lawyer got the necessary court order, obtained a doctor’s
prescription and one day arrived at the hospital with a brown flask in his hands. Nair,
although she was hooked on to a whole set of tubes, managed a smile. She was cured
of the opportunist infection and began her treatment with the cocktail knowing full
well that her gesture had opened the way for so many others to appeal to the courts
to enforce their right to live.
Her struggle now is against Lipodystrophy, a side effect of the medicines that
in the worst cases causes deformation of the body. The fight is to gain unrestricted
and immediate access to corrective plastic surgery that restores self-esteem to those
who really need it to be able to carry on living.
Nair is still alive. She has established her own connection with God and she
now understands that living is a bit like doing embroidery, following the patterns
marked out on the cloth. God draws the patterns on the cloth of life but the
embroidery is up to us. Based on the patterns each one of us constructs his own art.
Nair knows that her embroidery work is not finished yet – and that is good.
24
25
Her life would make a good movie
Scene 1 (1997) Twins less than a year old, abandoned in the middle of an avenue in
João Pessoa, crying with fear and hunger. Their only clothing is their nappies.
2 (2009) Teenage twins 13 years old smiling, beautiful, happy in a large two-storey
house. They have everything they need, above all, the love of their adopted mother.
3 (1997) The crowd does not know what to do. Someone suggests they should call
the police. Angelita Lucas arrives on the scene; she is a civil servant and works in
radio. She takes the initiative and takes the abandoned twins with her to the Council
of Guardians.
4 After having obtained permission to look after the twins for 30 days Angelita finds
out first, that their biological parents are seropositive; and then, that the children are
too.
5 Now Angelita has four children to look after on her own, three adopted ones: Isael,
adopted when he was 5 years old and the newly arrived twins Monick and Tâmara.
6 (2009) Now Angelita has five children, four adopted ones: Isael, 24 years old,
Monick and Tamara, 13, and the new arrival Thanna Ranny, one and a half. Her only
biological child is her daughter Cristina, who 23 years earlier had come into the world
in a most unusual way.
7 (1986) Angelita, who has worked as a maid since she was 11 years old has been
having some funny feelings. She goes to a woman doctor who announces: “You are
pregnant, and yet you are still a virgin. The girl asks her what she should do: “Go and
lose your virginity my love, lose it. You don’t want to lose your virginity in childbirth”.
8 Angelita decides to follow her doctor’s advice but first she needs to persuade her
father and her fiancé that she is still a maiden and that she only got pregnant through
doing it between her thighs. The fiancé does not believe her, much less her father.
9 Angelita takes the boyfriend and her father to the doctor who confirms that the “girl
is still a maiden”. With the fact duly confirmed and explained, all that is left is for her
to lose her virginity with her fiancé. That proved to be harder than expected.
10 (2008) One of the many events connected to AIDS that Angelita takes part in as a
consequence of being the first mother in the state of Paraiba to adopt a seropositive
child. Angelita recalls the curious events of her ‘first time’ or rather of her ‘first times’:
“I was scared. People said that when the girl is no longer a virgin and starts to walk
with her legs apart, if she wears white to her wedding the veil will fall off her head. So
I was very nervous on my first time with my fiancé. I felt a lot of pain and so he
stopped and tried again a bit more on the following day. Every day he got in a little
further. The poor fellow took over week to do it properly”.
11 (1986) Childbirth is so painful that Angelita decides she will never go through it
again. She promises herself that when she is better off she will adopt a whole lot of
children. But that is still far off in the future and in fact when Cristina is born she
hardly has a stitch of clothing to wear.
12 (2009) Cristina now has more clothes than she needs. She even has shoes that
match her handbag.
26
13 (1987) Angelita works all day as a domestic servant and studies at night. She
studies so hard that she passes in the Civil Service admission examination for a lowly
job in the Federal Justice System and starts to work as a telephone operator. On the
day she officially takes up her job she has to borrow clothes to go to work in.
14 (2009) Angelita now has a management position in the hierarchy of the local
Federal Justice administration. She has completed degree courses in Radio, Television
and Public Relations and a post graduate specialisation in Educational
Communication. On Saturdays she is in charge of the programme ‘Woman to Woman’
broadcast in Medium Wave by the Radio Cultura radio station in the town of
Guarabira. She offers advice and information on rights, health, sex and AIDS
prevention. She is so popular that she often receives presents like live chickens, from
her listeners.
15 (2005) When the twins are 9 years old Angelita reveals to them that they are
adopted children. “Mum, what is an adopted daughter?”, one of them asks. “It is a
daughter that is born from the heart” ‘Mum’ replies.
16 (1999) The twins are now 3 years old. The principal of the local municipal crèche
warns: “We don’t want any ‘Aidetic’ children here “. Angelita takes legal action, and
wins the case but nevertheless decides to move the children to a different crèche.
17 (1997) Angelita takes the recently adopted twins to the doctor. “They probably
won’t live to be more than five” she declares. Angelita disagrees and promises to
herself in silence: “Well I am going to see that I give my daughters a 15th birthday and
they will marry and have children and I will be a grandma.”
18 (2006) The twins are now 10 years old but still unaware that they have the virus.
Their mother tells them that the medicines they have to take every day are to make
them beautiful and strong. The girls find it strange: “our friends don’t take medicine
but they are still are strong and good looking!”
19 The mother starts to consider telling them the truth. She tries to prepare the
ground by explaining to them what AIDS is. “Well if I had a sickness like that, I would
kill myself” says Monick.
20 (2007) Monick is looking through some papers her mother has forgotten on top of
the bed and she discovers that she and her sister are seropositive. She cries a lot but
she doesn’t tell anyone what she has found out – neither her mother nor her sister.
Some months later Tamara also finds out. She believes that she will never be able to
marry or have children. She too cries but she keeps her knowledge a secret from her
mother and sister.
21 Angelita finally tells the twins the truth. Monick says she already knew, Tâmara
too. “So why didn’t you say anything about to me?” she asks shocked. The two of them
answer together as if they had practiced it beforehand “Because we didn’t want you
to feel sad”. Mother and daughters hug one another and shed copious tears, this time,
of happiness.
THE END
27
28
On the long road of life
Just like the words of the Brazilian song, life was indeed a long happy roving
around the country, especially after getting divorced and four months away from
home. A thousand kilometres a day. Asphalt full of holes; full of holes the dirt roads
too. From 5 in the morning till 10 at night. Sleep? Yes but only after some girl had
knocked on the truck door in some petrol station at the side of the road selling her
poor beaten up body. And there was always another gas station further on, and
another girl, and then another. And wake up again at 5 and sleep at 10 and drive on
another thousand kilometres. Until the day comes when the journey is shorter,
waking up is later and the stop comes earlier. Weariness, weakness and symptoms
very strange to a man that likes to show off carrying loads of 100 kilos on his back.
And 25 kilos of body weight disappear in no time at all and a blood test is done, and
the discovery that AIDS is not just something that affects crazy television stars like
Cazuza, Lauro Corona, and Sandra Bréa, and that condoms are not just for queens.
And finding out that you are 60 years old and you are going to die pretty soon. We are
already in the year 2000 but probably you will not be part of the 21st century.
Because there is no medicine for Aids! Oh yes, there is a medicine, but it is
just to put off death for a little longer; but life is good, so let’s take the medicine and
live for another year or two, who knows, maybe three or four, but never drive again,
sell the truck, sell the boat as well because “a dead man can’t go fishing” and stay
home thin and sad watching TV and see on television that an NGO in Ponta Grossa
that looks after needy seropositive people needs a driver, get up immediately, get
dressed and knock at the door of the NGO offering the services of a volunteer driver,
and realise that the name of the organisation is Re-live, and from there, start to live
again.
Nestor is now 70. He has been living with Aids since he was 60. When he, the
truck driver and the NGO ‘Revive’ crossed paths the organisation hardly had a single
vehicle. It had an old ambulance out of service, a ‘Caravana’ model with the wiring all
hanging out under the dashboard and its floor full of holes, that served as a plaything
for the children of the seropositive people that the NGO handled. It even had a rude
nickname of its own: Jabiraca.
Several mechanics had pronounced judgement: Jabiraca was a terminal
patient – that is if it was not actually dead already. But Nestor with his experience and
patience brought the poor vehicle back to life. It never managed to fully recover from
a certain invisible leak that left the driver, the social assistant Claudia, and the
passengers smelling of gasoline but the vehicle bravely transported patients for their
examinations or hospitalisations, carried the children to school and distributed the
food parcels. Good old Jabiraca! People smiled at Jabiraca’s noisy arrival in the slums
of Ponta Grossa, all out of breath. Jabiraca finally expired two years later with the
certainty that it had quitted all its obligations.
Today Nestor drives a brand-new Kombi donated by the Ministry of Health.
The organisation Revive has 116 families on its registers and receiving food and
advice on how to live better and participating in workshops dedicated to handicrafts
and dressmaking. 80% of those registered are women. Almost invariably they raise
their children on their own because their men abandon them as soon as they find out
that they have HIV – even though it was those very men that infected their partners.
29
Today Nestor guides the lives of others. Happy and sad because the nature of
life is to be sad or happy or even both at the same time. Sometimes he cries a little or
rather his eyes moisten because, as he learned at home, a man does not ever cry and if
he should cry he will get a beating. So now and again, Nestor moistens his eyes,
sometimes in sadness, - when one of the women dies and her friends go and pluck
flowers in the garden and Nestor has to drive the Kombi to the cemetery full of
women and flowers, or in happiness, as in the case of the woman called Perpétua,
who lost all the skin off her body was crying tears of blood and according to the
doctors had only six days to live but decided to live because she has a daughter,
because she is fond of the dogs, because she has a little rabbit, because it is not fair to
die now when she has got herself free from the husband who is a drug addict and
because she now has a whole life ahead of her and this woman Perpétua does not die,
quite the opposite, she lives and gets to know a man called Maurício, who is also
seropositive, who also belongs to Revive; and the two of them fall in love and they
marry and once more have a whole life ahead of them.
Or when a 12 year-old girl with nine tumours in her vertebral column and
another one in her liver about to spread into the intestine, needs to undergo six
months of chemical therapy and the doctors are doubtful whether she will survive the
third session because of her extremely low level of immunity caused by Aids, but the
girl resists and after four months, she no longer has any tumours, and courageous as
she is, decides that as she has not died so far she will not die any more and she agrees
to undergo the two months of treatment that are left and indeed she does not die and
instead, lives and grows to be a lovely 15 year-old girl.
Whenever a miracle happens and even when it does not happen but the good
fight was fought – Nestor’s eyes moisten and he feels that it was well worthwhile
dropping anchor in terra firma and exchanging the loneliness of the highway for the
daily living together with this little multitude of brave sufferers. Nestor is quite sure
that it was well worthwhile Re-living’.
30
31
The world of 2020
December 1st, 2020 Cristal is 13; Sol, the youngest, almost 11. The two of
them have written an essay that is going to be read out in a little while in the school
auditorium as part of the School Science Fair programme. The subject of the essay is
AIDS, a theme that is no longer such a big issue in the world of 2020. There is still no
cure for it, but the treatment is more effective and the severe side effects are now a
thing of the past. The number of people infected has fallen considerably thanks to the
generalised awareness of the importance of prevention. People continue to die from it
– just as ten years before people used to die from colds, measles, malaria – but the
numbers are going steadily down. But what has taken the spotlight off AIDS has not
been so much the advances in medicine, but rather, the progress of human beings
themselves. They have learned to face up to the disease more naturally and no longer
nurture prejudice against those that are living with AIDS.
So why then, is there such lively expectation surrounding the essay of the
sisters Cristal and Sol? It is because they are going to tell a story that most of their
schoolmates only know from reading about- Cristal and Sol are going to tell the story
of their own lives. First and foremost, it is the story of a woman named Alexandra,
who fought and won all the battles that seropositive people had to face in the first
decade of the 21st century and managed to ensure that her two children were not
born with the virus and would live to be here today, to tell us the story.
Cristal and Sol’s story really begins in February of 2001 when Alexandra met
Rodrigo. In July of that year Alexandra’s mother had died. On the night of the wake
Rodrigo complained of feeling cold. In the morning he was feverish and in the months
that followed pneumonia and tuberculosis broke out. Alexandra was away from Porto
Alegre for a while but when she got back in November, her boyfriend was at the
airport to meet her. “I have something to tell you.” Rodrigo had just found out that he
had AIDS. Four days later she was handed the same diagnosis when she left the
testing laboratory. United as they were by HIV, they entered the realm of drugs
together too. He was already a cocaine-user, she decided to try it and ended up sliding
down into a bottomless pit that was to rob her of four years of her life.
In March of 2002, Alexandra sold her car, TV, DVD and sound equipment and
went off to New Zeeland with no expectation of ever coming back. One day, three
months later, she called her father on the phone but there was no reply. Worried, she
called Rodrigo’s number only to learn that he was at her father’s wake. So now she
knew she had no father. In the space of a single year she had lost her mother, lost her
father, been infected with HIV and become a drug addict. “My mother is dead, my
father is dead and I am as good as dead too, so I might as well join them,” she thought.
But just when it looked as if it was all over for her she was saved by a sudden
overpowering urge to be a mother. This happened at 7 in the morning as she was
trudging up the hill to where she could get some cocaine, before she ever thought
about getting treated for AIDS. To become a mother she gave up drugs and decided to
find out more about the evil beast that was consuming her body. The first general
practitioner she went to was curt and rude: “You have AIDS! What right do you think
you have to become a mother? What kind of a half-life do you think you could offer
your children?”
Alexandra dried her tears and decided to try again. As she had no private
health policy, in the small hours of the following day, she, a decorator and furniture
32
designer, found herself in the queue for a consultancy with Dr. Teodoro, a specialist in
infectious diseases. The doctor was equally curt, but with this time with a positive
declaration: “You will be a mother. I will take personal responsibility for guaranteeing
your motherhood”. She left the doctor’s surgery with requisitions for further
examinations and a series of instructions on how to avoid mother-to-child
transmission. She strictly followed all the instructions and Cristal came into the world
in 2007, a beautiful healthy baby. With the birth of a daughter, Rodrigo also made up
his mind to stop using drugs. He stopped, relapsed and started taking them again,
stopped again and, with the help of Narcotics Anonymous, he has managed to stay off
them up till today.
But that is only half the story. In February of 2009, Alexandra and Rodrigo
decided to try and have another child. That was the beginning of Sol’s story. The
problem was that the couple was using condoms to avoid re-infection. The solution
was to use ovulation control to predict precisely the D-day of ovulation so that on that
day and that day alone they could leave the condom aside. Alexandra and Rodrigo did
their ‘homework’ – not at home but in a small downtown hotel while Alexandra’s
sister stayed home looking after Cristal.
Alexandra wants Cristal and Sol to know the whole of their parent’s story.
She wants them to have all the information about the disease that she herself never
had. Alexandra used to think that she was safe from the disease because she did not
belong to any of the traditional “risk groups”. Nowadays it is well known that it is not
a question of ‘risk groups’ but of ‘risk behaviour’. She thought that she did not look as
if she had AIDS but she found out that AIDS does not have a particular ‘look’. She
thought that people could not get infected by making love but only by having wild,
promiscuous sex. She was wrong on all scores and she learned her lesson the hardest
possible way. She does not want that to happen to her daughters. Above all, she wants
Cristal and Sol to grow up without nurturing prejudice against anyone at all and
ensure that through knowing all about the past they will be able to construct a better
future.
So then we can well imagine the two daughters in the year 2020, telling a
story full of sad moments, but with a happy ending. We can imagine the two of them
being warmly applauded by their colleagues and the teachers and on this day of
December 1st when they have finished telling their story we can imagine the
audience standing up and turning to applaud, not just the two girls Sol and Cristal, but
especially, their mother.
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The plucky fighter who combats two viruses at a time
He has been fighting HIV for 14 years but it is actually another virus, just as
powerful, that has left the deepest scars on his body and soul. The name of the second
virus is prejudice and it shows itself were it is least expected and contaminates those
that professionally should be entirely immune to it: hospitals and doctors
respectively. In 2005 History teacher Edvaldo Fernandes Farias was mugged in the
city of João Pessoa and during the assault he fell and hit his head on the curb. Hospital
examinations showed that he needed surgery. That was confirmed by the doctor, but
when they found out the patient was seropositive, the very same doctor reneged on
the surgery and sent him home. At night, Edvaldo began to feel dizzy and had an
unbearable pain in his head. He was taken back to hospital and there he stayed from
midnight till six in the morning lying on a stretcher in the corridor. He only received
any attention in the ward in the morning but the doctor refused to enter the ward
where he was: he stood in the doorway at what he thought was a safe distance and
asked the patient what he was feeling. Without moving closer he wrote out a
prescription and left it on top of a bedside table near the doorway for some other
kindly person to hand to the patient. That was the second time he had been
discharged from the hospital in less than 24 hours. Result: Edvaldo was not operated
on and he ended up losing his sense of taste and smell. Today, four years on, he is
beginning to distinguish the smell of some things again but he still cannot distinguish
between the smell of a jackfruit and an orange.
That was not the first time that Edvaldo had tried the bitter taste of prejudice.
In 1996, he had received a strange diagnosis at the hands of the psychologist attached
to the hospital specialising in infectious diseases: AIDS was a divine punishment
visited on him because of his sexual orientation. In 2002, the person organising a
Catholic prayer group outing to São Paulo tried to prevent him from going along. “An
Aidetic person is dangerous. What if he contaminates someone on the trip?”, she
argued. Thanks to the intervention of his doctor, Edvaldo embarked on the trip but
only to spend two and a half days of humiliation. On board the coach, the seat next to
his remained unoccupied. He was forbidden to use the toilet or to speak or sing using
the microphone. At the hotel, there was further offence awaiting him. On the door of
the room where he would be staying –alone of course- there was a sheet of paper
stuck with the terrible word “ISOLATED” handwritten on it.
Edvaldo was one of the first seropositive people to publicly admit that he was
infected. He is a spirited native of Paraiba state and he takes on the challenge of the
virus as a one to one combat between equals. At one stage in his battle against HIV he
was taking 22 pills a day (now he takes eight) Against the other virus he soon found
out that first he had to eliminate the prejudice that existed inside his own person. He
has managed to do that, but not without the help of two brothers, his partner of 20
years standing, his friends and - surprisingly enough – youngsters who were once his
students. Indeed those students were responsible for one of the most gratifying
moments in Edvaldo’s life: the day when he called together 400 students in the school
auditorium to communicate the fact that he was seropositive when he received
emotional applause and support from his audience.
Thanks to that chain of goodwill, Edvaldo feels that his burden is so much
lighter than that of many others he has met during his hospitalisations and during his
activities as a militant to which he dedicates much of his time. He has never forgotten
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the outburst of one boy from the rural area of the state: “AIDS is going to kill me but
society has actually killed me first”. He had been sacked from his job and expelled
from the family home. He spent 8 days on the street, gave up eating and died within a
month.. Edvaldo also met a 17 year-old girl who cried when she received the hospital
discharge because she had nothing to eat at home, and a mother who telephoned her
son asking him to come and pick her up at the hospital only to hear him say “I don’t go
into hospitals for Aidetics”. She became depressed and was dead within two months.
When HIV, prejudice and abandonment all come together, there is no known
medicine that can help. As Edvaldo himself wrote in his second book Aids: Aspirações
e vivências de um portador (AIDS the Hopes and Experiences of one that has it), (the
first was O amor vence a dor e faz viver [Love conquers pain and leads to life]):
“Just as a tree needs fertile ground to root in and grow healthily, so the virus
needs discrimination, and lack of support (...) to become increasingly aggressive”.
Edvaldo is doing well health wise. For nine years now his HIV has been
undetectable, firstly because he has adhered to the treatment body and soul, but also
because he does everything he can to avoid feeding the virus and to keep it from
becoming more powerful and aggressive: constant acts of solidarity, giving and
receiving love, writing books to share his experiences, and giving lectures. He could
have let himself go and just died but he chose to live and help others to live too. He
has eliminated the prejudice that was within him and wants others to do the same. He
has learned – and preaches the same lesson – that abandonment and prejudice lead to
depression and that diminishes immunity and thereby strengthens the virus.
As long as he still has strength and the support of those that love him, Edvaldo
is going to carry on fighting to destroy the prejudice of others. He knows that if he
were to die today, whatever the real cause of death might be, people would say:
“Edvaldo died of AIDS”. He believes that to change that state of affairs, in addition to
investments in research, what is needed is more solidarity on the part of families and
society at large, more humanisation of health professionals in the services, and public
authorities capable of viewing seropositive people not just as statistics but as human
beings that deserve to be treated with affection.
In other words, Edvaldo believes that the cocktail of love can beat the virus of
prejudice.
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Daiênni’s Little World
She has a foreign name even if it has been Brazilianised and registered as
Daiênni. But she is 100% Brazilian. Or as some people would call her in the
diminutive form she is a “Brasileirinha”. The diminutive form is appropriate because
although Daiênni is 23 she is small of stature. Her home too is smaller than small: a
single room, which can barely hold the bed, cot and TV set, where she lives with her
husband and her two little sons Adrian and Rodrigo. There are also five small cats Pirulito, Chumbinho, Mimi, Loli and Dudu wandering around inside the little house on
the poor outskirts of Porto Alegre. But do not let the smallness of everything deceive
you: Daiênni is a great Brazilian. One of those people that grow larger in the face of
adversity and do not let themselves be defeated when a stupid, uninvited virus
decides to barge into their lives without knocking at the door.
Daiênni does not know how or when she caught the virus. She found out she
was seropositive on the last day of her pregnancy when she was carrying Adrian, who
is now two years old. At first she could not believe it; then she broke down, cried,
shouted and raged at her own self. In the end she simply prayed that the child would
be born free of the virus; and Adrian was born free of the virus. A tremendous relief,
but not for very long because a few hours after the birth a nurse told her that the baby
needed to be transferred to the Intensive Care Unit. For the second time the world
seemed to collapse around her. But it was a mistake. The newborn baby that was
seriously ill was a different one; that awful sensation would be for a different mother.
Adrian had every chance of suffering mother-to-child transmission but in fact
he is a perfectly healthy, playful child. He only does not run around more, because
inside the house there is no space for running up and down. His younger brother who
was born a year and a half later is also perfectly healthy, but in his case, not so much
by the grace of God, but because during the time his mother was pregnant with him,
unlike her first pregnancy, Daiênni took all the recommended prevention measures.
So the virus that she and her husband carry in their bodies has became a little less
terrifying because the children, at least, have got off from it.
Daiênni and her husband have never asked one another who infected whom
because that is a discussion that can lead nowhere and when you have so little in the
world you need to cut down as much as possible on conflicts. If she has not been able
to breastfeed her children because of the risk of contaminating them, she does her
best not to suffer for that reason. “If it can’t be helped, it can’t be helped” seems to be
her philosophy. The same rule seems to apply to the need to live far from the older
children of her first marriage, Katlyn, 6 and Dérike, 4, who both live with their
grandmother. When people ask her if she misses them Daiênni answers by merely
running her eyes around the single room that is all they have. What her eyes mean to
say is that it is not love that is lacking, but space.
In Daiênni’s case the virus brought with it an unexpected side effect – she
became reunited with her father whom she had only met twice in her life, when she
was 7 and when she was 13. When he found out that his daughter had AIDS he sought
her out and offered to help. Not that he could help very much as he had little enough
for himself but the intention was well received. Also there is little time or space for
nurturing resentments even though when she was still a baby, her father tried to sell
her to a foreign couple. If the deal had gone through, Daiênni would not have been
named Dieniffer and would now be living a different life in another country, probably
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with a bedroom for herself larger than the entire house she occupies now – but then
she would not have had the husband and children that she loves more than anything.
Daiênni likes to write poetry, but because she does not know how to invent
her own verses, she copies poems that she feels the poet has written with her in mind
that she comes across in books; that is, when she can get hold of a book. She likes to
smile and smiles a lot. But there is one thing that takes the smile off her face, or rather
that destroys the will to smile, and that is prejudice. It sometimes comes from where
you would least expect it, from a sister, for example, who will not let her children play
with their cousins Adrian and Rodrigo, even though she knows that neither of them
have the virus.
It is from fear of prejudice that Daiênni, who works as a daily domestic help,
keeps her health situation a secret. Her husband who is a bricklayer’s labourer with a
regular work contract recently signed also avoids telling anybody. Not just to avoid
being looked at askance but for a much more practical reason: they would probably
lose their jobs and they might not even have the tiny house to live in any more.
Daiênni does not make big plans. What she wants above all is to keep the
family united, the children healthy and the virus tamed; and perhaps, a larger house.
That is possible; she and her husband have already bought the bricks. Little by little
they are going to widen the frontiers of their cramped world so that Adrian and
Rodrigo can run free in a house that is big enough to accommodate such great little
Brazilians.
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