Articles, Blog

Voices of the Epidemic

December 16, 2019

The first time I read about AIDS
was during the summer of 1982. I was a student. I was sitting in
my dorm room reading the paper. There was a story
by Jan van Wieringen.
I was a student. I was sitting in
my dorm room reading the paper. There was a story
by Jan van Wieringen. He was the paper’s
America correspondent. He wrote about a new disease
that had appeared in America. And there was an offhand reference
that people with haemophilia… were at risk for contracting
this unknown disease. That was in July of ’82. I remember that
there was something on the news. I was just visiting my parents. My mother asked: You are careful,
aren’t you? You’re being safe? And I said: Sure, mum.
That’s in the US. Don’t worry about it. And then, I remember…
I’m not sure when. We were at a bar
by the Amstel river. We always went on Saturday or Sunday. We were on the terrace outside
in the summer, drinking beer. Two friends of mine
had a newspaper article… about this American gay disease. And we laughed it off.
What nonsense. But the two guys who showed us
the article both died of AIDS. But all of us thought
it was no big deal. Twenty–six years ago, I
contracted HIV from my husband. He has since
passed away from AIDS. It was six months
after my daughter’s birth. Before, I knew only about HIV and AIDS
from the papers and television. Freddie Mercury had just passed away. I heard there were people with AIDS
at the Academic Medical Centre. And I went
to take them some carnations. What I didn’t know was that
on Ascension Day 1992… I was infected with HIV. I learned I had HIV in 2000. My partner,
the father of my oldest daughter… had to be admitted to hospital. They told us he was
seropositive for HIV. I thought: woah, seropositive? I thought only gay guys got that.
I didn’t know anything about it. Then they mentioned AIDS. Then I thought: AIDS,
I do know about that. It’s deadly. I immediately asked:
what about me? She said: You can get tested.
Some people don’t want to get tested. I said: I want to do it immediately. A week later I got the results back,
and they were also positive. In the beginning, you thought:
Oh, it’ll be fine. Only a small percentage of
infected people will get sick. A small percentage of those will die.
That was what we thought back then. Until it was turned around. They said: Everyone is going to get
sick and everyone will die. I can remember well
that this friend… he had a very “proper” lifestyle. Not a partying lifestyle at all. And I remember him telling me… he had a German boyfriend. A few weeks later,
he started complaining of… I don’t remember what, but symptoms
that were immediately suspicious. So he went to the doctor. He got the test results. I was at work
and he called me in tears. He was found positive. I think I immediately went home,
well, to his house… to support him. It was essentially a death sentence.
For him, too. There was immense panic. Not just because
you knew the end was nigh… but also because nobody knew
what was going to happen. On the other hand,
it was a group of people… who lived on the edges of society. You wouldn’t run into them normally.
They were a special group of patients. It also had something to do with sex. It was transferable, so if you weren’t
careful, you could catch it, too. Or some other disease. It was… you know,
it was seen as strange. It was different. Everyone knew it, but
at the same time, it was also denied. Especially the outside world
looked at it oddly. We had a lot of
HIV positive women at the shelter… and we didn’t know
they had HIV. Rumours started spreading. Babies were
born. We also had pregnant women. They were born at the AMC, the only
hospital that would help with that. We didn’t know they were HIV positive,
we heard it after. It’s not an answer to your
question, but we panicked… because the babies
were also HIV positive. We’d been working with them
for months. It’s a lot of work. We helped guide the parents.
You’re constantly touching the kids. I lived in Almere.
I drove a motorcycle. I drove home at breakneck speeds.
I spent hours in the shower. Which was ridiculous, I had worked
with those kids for six months. I had two kids at home.
I was scared witless. Very bad. Eventually we got
some information, like I said. That set us at ease a little. It was only then that
we started taking precautions. We had to take them.
We didn’t before. Gloves and an apron.
That’s what we received. It was a frightening time
for everyone. There was a possible danger, but you
didn’t know how severe it was. As a patient, but also as a parent of
young children with haemophilia. The doctors, the parents,
and patients themselves… all injected the medication
two to three times a week. One of the first things we considered
was not taking the medication. It’s a decision some people made
and some people did not do. They figured not taking the medication
was more dangerous… than the possibility of contracting
the virus. You needed to choose. All in all, we spent
a total of three years… taking medication that
possibly contained that virus. Very slowly, you start to realise
what’s actually going on. You have no idea
how it will progress. Sometimes you’ll think: It’ll be fine. Other times you’ll imagine yourself
in a coffin in six months. Until it came even closer. My own boyfriend got sick in 1989. Then it gets very… It was very up–close and personal. And then I really thought…
He passed away in 1991. And I thought:
I’ll be the next person they bury. Back then,
when you were diagnosed… you were sent away like: that’s it. You could either become
very depressed and give up… or you could
throw yourself into activism. I was the latter. I had
lots of friends in New York… who were like: we have to change
the world, this is ridiculous. I was a part of ACT UP in New York,
an organisation… where we did crazy things.
We shut down the city. Throwing ashes over the gates
at the White House. Hauling people
in open coffins through the street. We blocked churches. We really
tried to shut down New York. We demanded action
because we weren’t heard. We were painted as this group of
scary, contagious people. You were criminalised. They basically
stopped seeing you as human. It was quite a shock. But it did make me kind of famous. On the street people would point at me
like: she’s the girl who has it. Why are they pointing at me? Why can’t
they just ask what happened? And eventually I learned
that it was this big taboo… in the Surinamese community. I have been severely beaten up before
because someone… happened to find
my pills in the kitchen. They were people
who were so afraid of HIV… and who had no clue
what the medication does. And what it is. I got off easy because I was only… sent to the ER with a broken arm. But you can be beaten to death.
That does happen. Yes, I had a lot of comments
and criticism thrown my way. Comments like: you’re fat. How can it be that you have
HIV or AIDS? That was in 1993. Aren’t they all skinny? And you
don’t do drugs, so what’s the deal? Are you a whore? I said: No, I’m a married woman
with a nice husband. I had a baby. And this is what happened.
My husband cheated on me. How my kids responded?
My daughter was four. I only told her when she was eight. A book came out:
‘Brenda has a dragon in her blood.’ I read it to her every day. And then I was Brenda, in this case. And the dragon
in my blood was HIV. That’s how I explained it. I took my daughter to my physician. Jan van Ede, a very good doctor.
Yes, a great doctor. And he told my daughter:
Your mum isn’t going to die. But during the time when
her father passed away… there was a soap opera with a
character, Anita, who had AIDS. When her father was very sick,
he had to go to hospital for care. We went to see him a lot.
Eventually he died of cancer… because of AIDS. I got a call that my daughter’s father
had passed away. And then I had to tell my daughter. And she said the most beautiful thing
I have ever heard. She was ten. I told her,
“Daddy’s passed away.” “Of what?”
Of AIDS, I said. “Just like Anita, in the show.”
I said: Yes. “And you, mum?”
I thought: Oh dear. Yes, mum also has it. And she said, “But you’re a
superwoman!” Yes, I am. And I’m going to make sure
I live for a very long time. Until you’re eighteen!
And I managed to do so. They asked me to train
the first buddy group… with my colleague Herman Kaal. We created a protocol about
what such training should consist of. What was the best way to
help guide the buddies. Through supervision and intervision. We immediately created
a lot of ways to support buddies. Leo lived another
three quarters of a year… after he was told he was infected. I remember that he received
permission from the doctor… to join us when we went
on holiday in the south of France. He was able to have
one last holiday trip with us. But it was very dramatic.
He was already very sick. We had to constantly keep an eye on
him and take care of him. I remember our car journey back
from France to the Netherlands. He couldn’t
keep anything in anymore. So we covered
the back seat in plastic for him… so he wouldn’t worry about
making a mess of things. We got home. Almost immediately he
was back in the hospital a few days. And then he was near his end.
He had a few more months… and then he passed. I have nice memories, though it ended
badly. There was a mother with AIDS. She had a son. He spent six weeks
in the hospital in the AMC. Then he came to us.
The mother lived independently. And she came every day, from morning
until closing, to sit with her child. She knew she didn’t have long. The father of the child came as well. The two of them, extremely addicted,
engaging in sex work… they’d both come to visit that child. They were so incredibly sweet. Eventually both parents passed away. It’s a good story. Of course it’s not good
that the parents died of AIDS. But they were so involved. They were so vulnerable,
but they’d do anything for that child. It is noticeable. They lived for
another year and a half. And they were constantly with him. That child received
a lot of love and attention. Everything he needed to grow.
They really were able to do that. It was beautiful, a lovely story,
even in their vulnerable state. At seven in the morning, my alarm
would go off. First, take the pills. An hour later, the next pills.
All on an empty stomach. Then, eight hours later…
Wait, is that right? Eight hours later,
the next set of pills. And then three hours later
the pills I had to take twice a day. And at eleven in the evening… more pills,
again on an empty stomach. It was a very strict schedule,
taking your medication. An important job of a nurse
is protecting the quality of life. Not just with HIV.
You see it will all kinds of diseases. I sometimes think:
how long will you keep going? And how far will you go to give people hope. People have to decide for themselves. Sometimes I think that hope is given too soon. And a too optimistic description of a treatment. As a nurse, I think you must choose the side of the patient and make sure that the patient can make that choice. And that can conflict with what a doctor thinks. When people ask me:
what did you do? I’ll tell them about the basics. And the answer is always:
“That must have been really rough.” Of course it was hard sometimes,
but it could also be lovely. Because of the support,
and working together to try things… the special people
who worked with us. I could find buddies for people,
but they were the ones doing it. I didn’t… I didn’t
take people to the hospitals. There were very special people
who helped shape that. The work has changed. I can pretty much
summarise it in one sentence. But that isn’t very nuanced. But in the past, it was terminal care. You helped guide people
to the moment of their death. And now it’s life care. Now, you’re helping guide people… so they have a good life
and grow old with this disease. Hemophelia was diagnosed
quite quickly after I was born. The paediatricians told my parents,
“he probably won’t live to be very old.” Twenty, maybe thirty. When I was 16, they found a treatment
for haemophilia. It changed my life. When it turned out that the treatment
carried a risk of HIV… it was once again like
my whole world had changed. Only now my lifespan was short. With the HIV medication I thought:
my life expectancy changed again. By then I was in my thirties, forties. And I thought:
I need to think about my pension. Before then, that wasn’t an issue. People are very blasé about it now.
Like, “oh, but you’re still alive.” “So there’s nothing to worry about.” People try to push it away
and hide it, like, “oh, you’re fine.” That’s something I noticed.
A good friend of mine… passed away from cancer.
The medication can give you cancer. It’s one of the side effects. But they don’t say that out loud.
Nobody tells you that. But there are four people that
I know personally who had HIV… who died of cancer,
partly due to the medication. That’s really concerning. I’d go to talk to my physician
and say… all these people I know
died of cancer. I’ve looked up the medication and
side effects and what can happen. And there’s a clear link to cancer. I asked: What do I do, doctor?
I’m so scared. He said, “I can’t test if you have
cancer every month.” “If you get cancer, you get cancer.
Learn to accept that.” You can’t do anything about it. Most people don’t know that
if you have HIV, the medication… can give you
these kinds of scary things. I try to celebrate every day. When I have a really bad day,
I try to think… that I just need some time to
curl up under a blanket. And when I’m done playing hermit,
I’ll have the energy… to think: it was bad,
but it wasn’t that bad. Because tomorrow I can
do it all again. I can do something with my life,
with other people. That’s where
I developed that strength. But because they
developed medication for it… I can live my life in
a completely different manner. I see the change in
the people around me too. I think it’s very important
for schools… to make sure that young people
get information about sex. Teach them that of course
sex is great and fun. But for god’s sake,
be safe about it. Just like how sexual education… tells young people to be careful
so they don’t get pregnant. They should also be aware
about preventing HIV. And that even the very first time you
have sex, you can contract HIV. You can get pregnant
from your first time. I have the feeling that
a lot of young people… don’t quite understand that. Especially
the schools in Amsterdam… where they talked about my daughter. I asked: please, can I go there? The school where
my daughter was bullied. I would like
to talk to these young people. I got permission. I was able to do
Dance4Life in Amsterdam. So I told my story. My partner was terminally ill
in the hospital and died. Before he died,
I was told that I had HIV. My daughter was tested.
She doesn’t have it. But now I have a daughter
who lost her father. The entire room went silent. They called up my daughter saying
“your mum is so tough.” “Everyone has respect for her.” I actively try to enjoy
everything I see, feel, and taste. I make a conscious effort. If you have a positive mind set,
you live longer, I think.

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