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Prisca
Mhlolo
Stephanie
Nolen
May 2007
Extracted from
28:
Stories of AIDS in Africa
Prisca Mhlolo
took an inventory of all the fear and shame and hurt.
The scar on her forehead,
that's where her sister hit her with a bottle. "This
here," she said, running her fingers over a scar at the back
of her head, "this was a bench, my brother hit me with a bench."
Next was a raised keloid scar on her chest. "I had a big cut
there. I don't even know what hit me. That was my other brother."
What prompted it? "The
word AIDS. That word was enough."
In 1977, Prisca decided
that ten years of keeping her secret was plenty, and she confided
to her closest family members that she was living with HIV. "It
didn't go well," she said dryly as we settled on the
lumpy couch in her house in Harare in early 2006. I had known Prisca
for years as an outspoken counsellor and advocate for people with
HIV in Zimbabwe, and I knew she had had a hard go of it: she has
a flinty fearlessness that comes with losing a great deal. So one
day I asked her to tell me the whole story - it took her that day
and well into the warm night, until even the neighborhood dogs had
ceased to bark, to chronicle the cost HIV has exacted from her.
It began with a sick
baby. In 1987, Prisca and her husband, Bruce, both twenty-seven,
were living in a small house in Mabvuku, a low-income neighborhood
on the outskirts of Harare, the capital. It was an era of new prosperity
in a country independent for just seven years. Bruce was an army
medic, earning a decent monthly wage, and Prisca was as much in
love with her soldier husband as the day she first laid eyes on
him, as a schoolgirl of eighteen. They had married at 23, against
the wishes of his family, because she is from the Shona ethnic group,
while Bruce was Ndebele. But no matter: They had found a house they
could afford in the city. They had friendly neighbors. They had
two bright and healthy children, Bianca and Richard.
In 1987 came a third
child, Agnes. By her first birthday, it was clear something was
grievously wrong with her. "She was always in and out of hospital
with her swollen eyes, with diarrhea, you name any disease,"
Prisca said. "Of course, we didn't think—we didn't
know what it was. Each time we would take my daughter to the hospital,
they would say a lot of things: 'It could be liver, do you
have asthma in the family, do you have cancer?' But there
was nothing of that sort in the family." Finally one doctor
took Prisca aside. "He said, 'Look here, we need to
do some tests.' He never said what tests, and it was ok with
me. They were going to find the problem."
The doctor drew a vial
of Agnes's blood to test her for HIV, the first cases of which
had been reported in Zimbabwe six years earlier. "The thing
I knew about AIDS was that AIDS was for sex workers, prostitutes,
not married women, not baby girls. If you were a promiscuous person,
automatically you could get AIDS. But there I was, a married person.
I had slept only with Bruce."
Two weeks after the doctor
took blood, Prisca carried her daughter back to the clinic to collect
the results. The doctor himself didn't turn up. And the nurse,
although she knew Prisca well after all her visits, spoke to her
coldly, without any of the formal greetings that would normally
begin such a meeting in Zimbabwe. "She was just looking at
me, she didn't want to talk to me, she didn't want to
play with my daughter," Prisca recalled. "Then she took
a letter and threw it at me. I said, 'What is this now? I
came here because I want to see the doctor, I want to get the results.'
She said, 'Those are your results, Prisca. Your daughter has
AIDS and she is going to die. Don't waste your time."
All the anger shock and
pain of that moment were clear in Prisca's face twenty later
years later. "The way she said it was something else: AIDS!
Where did the AIDS come from? I looked down at my daughter in my
lap and she was not a child any more, she was something—she
was now AIDS to me. I didn't want anything to do with that
child. I took her and threw her—she hit the corner of the
desk and got a big cut. She collapsed. And I ran from that hospital
into the street screaming. Doctors were coming and they wanted to
get hold of me but they couldn't because I was running. In
Mazoe Street, just by the entrance, I collapsed. The next thing
I knew, I woke up and it was two weeks later."
When she awoke in a hospital
bed with her husband standing next to her, she turned to him in
anguish. "I said, 'Bruce, we are dying, we are already
dead.' He said, 'Why?' I told him about Agnes.
I told him, 'Because of AIDS. 'I'm a moving grave
as you see me.' That's what I told him.
"He laughed. Up
till now, I can hear him laugh.
"He said, 'Prisca,
look her. There is nothing like AIDS, there is nothing of that sort.
AIDS is a white man's disease. There's been a mistake
in this hospital. The results given to our child were a white child's
results. You don't have to worry. I still love you. I still
love Agnes. We can go home and rejoice. These doctors don't
know what they are doing."
His words didn't
entirely make sense, but Prisca was comforted regardless. "When
it's coming from your husband, who is learned, whom you trust,
the one you don't suspect has other partners—I was ok
for that moment. Though it was a lie, it helped me. It made me feel
better."
Nonetheless, a full month
passed before she was strong enough to be discharged. She ached
with guilt each time she looked at the scar on Agnes' forehead.
Before they left the hospital, she made a request of her husband:
just to be sure, she wanted the two of them also to be tested for
this AIDS business.
"He didn't
refuse. He was a cool guy. He said it was ok with him." He
was, she said, gambling.
Their results came back
positive. Prisca said she knew as she read them that it was true,
there was no laboratory mix-up. How else could Agnes have got the
disease? "I said, 'OK, I have AIDS.' I asked the
doctor, 'How long will we live?' He said, 'You
will not survive.' He gave Agnes two weeks, he gave me three
months."
Her sole experience of
the virus came from a neighbour who had gone away to work in South
Africa, died there of AIDS and been shipped home in a biohazard
bag in a sealed coffin. "At that time it was said that if
you looked at someone with AIDS you will get the virus." Now
Prisca could picture her own imminent death. "I'm going
to die, I'm going to be put in black plastic and my coffin
will be sealed. What about the church people, what are they going
to say? What about my parents, what of my neighbours?"
She was discharged from
hospital and carried Agnes home to her house in Mabvuku, where the
other children were anxious to have her back. But her joy at the
homecoming barely lasted until they were through the door. "When
we came, something funny happened. That loving and caring husband
changed into a monster." She had climbed straight into bed,
and now Bruce stood over her. "He said, 'Prisca, look
here. Your AIDS, we left it at the hospital. In this house, I am
in charge, I am in charge of you—don't forget I paid
lobola. I am also in charge of the children. So if you dare talk
about HIV/AIDS to anyone, I am going to kill you."
Prisca understood that
this was no idle threat. "He was a soldier who used to bring
a pistol or even rifles home. Even up to now, soldiers can do anything."
Men from the army regularly beat and sometimes murdered their wives,
and there was never an investigation. Prisca knew she could easily
die the same way—at the hands of this grim stranger, her husband.
Looking back, she has
little doubt that Bruce knew his HIV status long before she took
Agnes to the hospital for the test. She reckons he had tested positive
some time before, in a military screening, and he either hoped that
somehow the hospital test would be negative—in the mid -1980s,
HIV testing was a more imprecise science—or that doctors would
not tell Prisca the truth. Now he told his wife about a close friend,
a fellow soldier, who had tested positive a year earlier "for
this AIDS" - a man who was still strong and healthy.
Whatever the doctors said about the days or weeks they had to live,
Bruce said, it was all garbage: his colleague was fine.
Prisca began to take
Agnes from clinic to clinic across Harare, searching for someone
who would give her a new diagnosis. "My life was packed with
lies—because I knew what was wrong with my daughter and I
was also in denial, saying, 'No, it can't be, not my
daughter, not me." But the doctor's prediction haunted
her, and she sensed her days running out. She gave away her clothes,
offering no explanation to the startled friends in whose arms she
heaped skirts and blouses.
"Then it was two
months, then three months, then ten months, a year, and we are still
alive. But in this home there was no happiness. It had stopped.
We couldn't talk the way we used to because of this AIDS thing."
If she puts on nice clothes to go out, Bruce would call her a whore.
He was critical of any plan she made, fearing that she might confide
their secret to someone outside the home. "Even church—I
stopped going to church." Instead, she sat at home and wondered
what she could possibly have done to bring AIDS upon her family.
They all remained alive
through the next four years, although Agnes was always frail and
fighting one ailment or another. Prisca did not take Bianca or Richard
to be tested. "I was confident the other children were healthy—but
really, I didn't want to know. To think of looking after another
child who had AIDS, that was too much."
From the outside, they
looked like a normal family. They had relatives nearby, Bruce's
colleagues from the military and friends from the Anglican Church.
But her secret made Prisca feel horribly isolated. "I was
with my problems alone."
And then one day in 1992
she heard on the radio about a support group for women with AIDS.
She wrote down the address and set off right away, without telling
Bruce where she was going. With Agnes in her arms, she walked into
a room where a dozen women were gathered, and felt instant, immediate
relief at the site of these others—some black, some white—all
of them also infected with HIV. They told Prisca about Lynde Francis,
a tough white Zimbabwean woman who ran a building company and who
had been living openly with HIV for an almost unheard-of eight years.
That afternoon, Prisca carried Agnes to Lynde's graceful old
house and told her the child had the disease. Lynde took Agnes and
put her in the bathtub (Agnes had constant diarrhea) and then gently
explained to Prisca about HIV—the virus she had—and
AIDS, the disease to which Agnes had clearly progressed.
Prisca joined the group
of women who met regularly at Lynde's house. They called themselves
Tariro, or "hope" in the Shona language. "Everyone
who was there had hope: we will live with the virus." Yet
hope notwithstanding, they lost members regularly. "Death
was surrounding us. At every meeting you would hear, 'So-and-so
who was here last week is no more, is dead, and So-and-so is very
ill."
And by 1995, it was Agnes:
she was skeletally thin. Prisca was awed that her child had lived
even that long. "She was strong. And got all the love, from
me—and from Bruce. Each time Bruce went out to Tanzania or
Mozambique he would bring something for Agnes, a new dress, a pair
of shoes or a toy. He loved that child—maybe because he knew
he was the one who had caused all the problems."
Prisca took her daughter
to stay in a palliative care hospice full of AIDS patients. Eight-year-old
Agnes had a lesion on the side of her face that would not heal,
and at the hospice, they diagnosed the skin cancer Kaposi's
sarcoma. It was easier to care for her there, I started crying.
I saw a lot of people who were sick. I never thought that in this
world I would see people who were sick like that." And Prisca
was afraid—that people would know, because Agnes was in the
hospice, that she had AIDS. "I was afraid of Bruce and his
threat, that's one thing. But also for myself: if people know
about me and my AIDS status they won't want anything to do
with me." By then nearly 20% of Zimbabwean adults were living
with HIV, yet as Prisca remembers it, the fear and stigma remained
almost totally unchanged from the day of her diagnosis.
She knew that Agnes,
lying in bed, could overhear voices from the corridors, heard when
people died in the rooms on either side, or when everyone gathered
to pray for a person in the last moments of life. "It's
harder than your own diagnosis, looking after a dying child with
AIDS," Prisca said. "The pain was there written all
over her face. She would cry and say, 'I think I'm also
going to die, because the pain is too much. My whole body is painful.'"
Finally, sensing Agnes had only a few days left, Prisca took her
home again.
On November 20, 1995,
Bruce had a day off and decided to go into Harare. Agnes first pleaded
with her father not to go, saying he might find her dead when he
returned. Then she asked him to bring her favourite treat, chicken
and chips from the city. But soon after he left, she asked for the
pastor, saying she wanted to be prayed for. As the pastor finished
his prayers, she died. Bruce can home several hours later to a house
and yard overflowing with people. Toting the chicken in a paper
sack, he rushed to the bedroom and found the neighbours washing
his daughter's wasted body.
At her funeral a few
days later, he became completely hysterical. "Some people
thought he was drunk," Prisca said. "He even wanted
to throw himself in the grave." The drama was just starting.
While still at the cemetery, Bruce developed diarrhea. "He
was pouring profusely. He didn't even see the end of funeral,
he had to be ferried back to the house. And that was the beginning
of a new era."
Her husband, the strapping
soldier, never walked again. "He was so depressed. He started
talking in tongues. He had dementia." At times he would weep
and apologize to Prisca for having killed their daughter. Another
time he confessed to infidelities while posted in Mozambique. "Because
of Agnes's death it came into his mind that this is real and
he is going to die."
Prisca believes the shock
and stress caused him to progress rapidly to full-blown AIDS. But
still, from his bed, he tugged at her skirt, and pleaded with her
not to tell. "I kept the promise." No one had suspected
AIDS when the child was ill, because her parents were still so healthy.
And now, although Bruce was clearly desperately ill, Prisca looked
fine. "I was surprised they never thought of AIDS, but I was
happy for that. I was safe."
Except that, instead
of AIDS, Bruce's family began to suspect his wife of having
cursed him. "One day his parents brought a traditional healer
who waved a wand and pointed at me, saying, 'This is a witch.
If you leave your son here, he is going to die. You must take him
away.'" Many people in Zimbabwe and elsewhere in Africa
invest great faith in traditional healers, who heal the sick with
natural medicine and use visions and divination, like healers in
aboriginal cultures around the world, to try to explain events,
good and bad, that befall their followers. But along with legitimate
healers, there are charlatans who invoke the spirit world to justify
actions like those of Bruce's parents, who now accused Prisca
of having first killed Agnes and now attempting to kill Bruce, in
order to get his money. They picked her husband up by his shoulders
and legs and carted him out to the car. Even as he was carried out
of the house, he pleaded with her not to tell the truth about his
illness.
Prisca was still standing
in the doorway, stunned, when a truck pulled up a few minutes later.
Supervised by a few of Bruce's relatives, workers packed up
the family belongings. "They took everything, even the utensils,
even my clothes, even the children's clothes." The neighbours
looked on in astonishment. That night she and the children slept
on the floor of their empty house, on a thin blanket loaned by friends.
A few days later, she
traveled the 200 kilometres out to Kwekwe, where Bruce's family
had taken him. But at the door of the house, she was turned away.
Perhaps, she said, her in-laws really believed it was witchcraft.
Or maybe they had an inkling of what might be wrong, but the idea
that Bruce had this mysterious disease that struck down healthy
young people when they behaved immorally was too awful, too shameful,
to contemplate. If the workings of sorcery were hard to understand,
AIDS was worse. Everybody knows about greedy wives who cursed their
husbands; few understood viruses. Prisca turned away and made the
long journey back to Harare without catching sight of her husband.
She feared his family might unwittingly contract HIV as they nursed
him—at her support group she had learned of the risk of infection
in blood or diarrhea—but she could think of no way to warn
them without giving away his secret.
Bruce died a few weeks
later, but the family did not notify Prisca. She learned the news
only two weeks after his death when a good Samaritan travelling
from Kwekwe slipped an unsigned note under her door. "I remember
screaming. I screamed so that all neighbours came." She went
back to Kwekwe, and the family begrudgingly let her visit the grave,
but she could not stay long enough to perform any of the rituals
that a Zimbabwean wife is supposed to offer at her husband's
grave.
And then it was Prisca's
turn: the shock of her husband's death and her sudden impoverishment
caused her own health to collapse. "I wanted to tell my mother
but I didn't know how to start. I was so sick. I got a terrible
headache, I got a terrible rash. My hair fell out, there was nothing
left. My lips became red with sores everywhere. I couldn't
stand on my own, I couldn't sit, I couldn't even feed
myself. But because my family members didn't know what was
happening, they took care of me at that time. I was dying. I was
on my way to heaven."
In the meantime, she
had a very earthly problem. Until he was hopelessly ill in the last
weeks of his life, Bruce had insisted they have sex—"naked
sex," as they call it in Harare, sex without condom. "He
would say, 'Prisca, I married you, not a condom, and we are
not going to use one." Their house was sandwiched between
the neighbours, with just screens on the windows, and she couldn't
bear for the neighbourhood to hear their arguments. "That
would make me a no-good woman, because if you are married in our
culture, you have to abide by your husband's rules."
So she acquiesced.
A few weeks before Bruce
died, Prisca had gone to the hospital to try to enroll in a drug
trial she had heard about at the support group. The trials, run
by big North American and European pharmaceutical companies, were
then the only way of getting access to AIDS medication in Zimbabwe.
A physical exam, including a pregnancy test, was part of their trial
screening—and now the doctors told her she was six months
pregnant. She was stunned. In the drama of Bruce's death,
it had never occurred to her that she might be pregnant again. "It
wasn't good news. I started thinking of Agnes . . . "
She could not bear the thought of nursing another dying child. But
the doctors told her she was too far into the pregnancy to end it.
She was hysterical. "I told the doctor, 'If you don't
abort me, I will kill myself at your home.'" Her threats
persuaded them, and although she was not well, her health stabilized.
Now, however, she was
penniless, with two children to raise and no idea how to make money.
Prisca talks about many of the most difficult episodes in her life
with poise and calm, but when she told me this part of the story
she broke off and wept. A friend told her she could make money by
having sex with men from the pub. She could think of no other way.
She refused to go and work in the bars, but the friend brought men
to her house late at night. She felt filthy, she said, full of guilt
and shame and nearly crushed with the weight of her secret, with
the knowledge she might be passing HIV to these men. But she saw
no other way to take care of her children. "There was no food
and I wanted to pay for school so much."
And then, when
she felt trapped and panicky and nearly mad, came rescue. Her support
group received donor funding to send two members on a year-long
college course to train as HIV counselors. Prisca was chosen, and
immediately excelled. "It was like I was born into it. I was
doing the course with nurses and doctors and here I was, a nobody
just with my O-levels, but I did well." She earned, in fact,
a 95% in her first semester. Lynde Francis had in the meantime turned
her support group into an organization called The
Centre. It provided testing, counseling and HIV education built
on a philosophy of "positive living" - Lynde told
people that with good nutrition and a good attitude, they could
live healthily with the virus for years, as she had. Lynde offered
Prisca a job as a counselor. "It answered all the prayers
that I was praying all the time. I stopped the dirty work and started
a new life."
But before she had even
finished the counselling course, Prisca received more dreadful news.
Richard, her second child, who was in high school in Mutare, had
taken his own life by drinking pesticide. As he explained in the
letter he left for her, written on notebook paper in his messy schoolboy's
hand, he had been sexually abused by a teacher and he was certain
that he had been infected with AIDS. "He knew his sister and
his father died of AIDS, although he didn't know about me.
He wrote me, 'I don't want to die like Daddy and my
sister, that's why I am killing myself. I don't want
to die of AIDS, that's why I'm taking my own life."
At the funeral in Mutare,
Prisca made a decision. "Something in me just said, 'Enough
is enough. It is high time.'" First she read Richard's
letter out to the family, revealing that Bruce and Agnes had had
AIDS. Bruce's father had snuck away from his own to attend
his grandson's funeral, and Prisca felt relief that now he
would know the truth, and could tell the others what had really
killed her husband. Then she told them she was also infected. After
a moment of stunned silence, her siblings launched themselves at
her with the bottles and the bench. "I was beaten like a thief."
Prisca got away from
them and ran out of the house, and a friend took her to a clinic.
She needed dozens of stitches. Her spectacles were smashed, her
clothes so drenched in blood they could not be salvaged. Friends
urged her to return to Harare immediately, but Prisca felt she could
not leave without visiting her son's grave the next day. She
slept that night in a hotel, her wounds throbbing.
The next day, when she
arrived at the cemetery, her family was already there, and there
was another scene. "Prisca, do you see your mother here?"
her older sister Mercy asked nastily. Their mother was not there:
Prisca's siblings told her she was in the hospital with perilously
high blood pressure, "because of your AIDS." Prisca
performed the rituals at the grave and left quickly, heading for
the hospital. But when she approached her mother's bed, her
mother thrust her arms out. "She said, 'Prisca, don't
come near me, you and your AIDS. Don't ever, ever come. I
don't want to see you." Prisca dropped the fruit basket
she was carrying, sending oranges and bananas scattering across
the floor; she moaned and sank to her knees, and nurses came running.
Her mother insisted she get out. Prisca collected Bianca and headed
back to Harare.
"AIDS, it brings
a lot of problems and hatred," she said to me, still wistful.
But she had crossed a
line and she was not going back, regardless of how her family behaved.
Days after Richard's funeral, she was asked to do a national
television interview on HIV testing and counseling. "The presenter
asked how I felt dealing with people with AIDS. I said, 'It's
okay with me, because I am also HIV positive. I have the virus."
Her colleagues were shocked
at her bold disclosure, but congratulated her on her courage. Prisca's
siblings, however, were also watching. "That night my sister
Mercy came. She gave me good, good, good, good claps" -
blows to the head. "I didn't fight back because I respected
her—she's older. She said, 'You have shamed the
whole clan,' that our family was now dirty because of me."
(That, as Prisca would soon learn, was a most ironic statement.)
She quickly discovered
that others beyond her family were not impressed with her public
stance either. "Things had been going better for me. I was
gaining weight, I was okay, I was respected in the community, I
was a professional, working, earning good money. But coming out
on television was a big blunder. It didn't go well with my
neighbours. If I was seen talking to a male neighbor they would
say, 'Ah, our man, he will get AIDS from this AIDS victim.'"
Yet while she was publicly
shunned, there were many evenings when she would hear a soft tap
on the window frame after dark—people too embarrassed to come
to her house in daylight came at night to seek advice. "They
would say, 'I have developed this rash, does it mean I have
AIDS?' or 'My husband is ill, can you come?'"
By this time a quarter of Zimbabwean adults were living with HIV,
and scarcely a single family was untouched, but still only a handful
of people had the courage to go public. It made Prisca a magnet
for those seeking help.
The next few years went
well, except for the pain of the estrangement from her family. "But
I was okay with that. I was surrounded by people who were like family."
Then, early in 2004, her brother Lovemore died - of AIDS.
Months later, her sister Mercy died of AIDS, and two days later,
her young brother died of meningitis, a common HIV related infection.
Finally her last surviving sister Violet, fell ill.
Now Prisca found herself
back in favour with her mother, who came asking for money for seed
and fertilizer to put in the next year's crop. She couldn't
resist asking her mother if she was sure she wanted to accept cash
from a person with AIDS, but she gave her the money. "Even
though these are the ones who made me to suffer and no one ever
asked for forgiveness or said they were sorry for what they did."
Family is family.
Through more than twenty
years of living with HIV, Prisca has had a lot of time to think
about the fear and disgrace that dog this disease even though so
many people have it themselves, or have partners and children and
sisters and cousins who are infected. "In the early days,
when it first came, it was a disease for prostitutes. There were
posters with a guy and a bottle of beer and a lady in a miniskirt.
Those were the ones who were supposed to get HIV—not married
people," she said. "Now people know better." Yet
the stigma remains, as does the belief that bad things don't
just happen but rather are earned, or engineered through witchcraft.
The policy of confidential
HIV testing, imported from the West where AIDS began as a gay disease,
hasn't helped either, she said. "This confidentiality
is killing a lot of people. Let's look at the woman's
side: the husband goes and he is tested, but he doesn't come
home and disclose his status. What does that mean? The wife is going
to be infected. Because he doesn't have guts, she is going
to die." Or women are tested, in prenatal visits, but won't
tell their husbands if they are positive for fear of being accused
"as the one who brought it."
Coming to the
end of her story, she sighed and slumped back on the couch. "In
our culture, you don't tell. We don't talk, and that
is killing the nation."
*Stephanie
Nolen is a journalist with the Globe & Mail.
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