Today is a Very Special Day
December
1st is my birthday. I turned 26 today. Over the years, I have learned that it
is a very common birthday, and I have had the privilege to befriend
several of my birthday buddies, all of whom are wonderful people. But as great
as we are, we are not what make today particularly special.
Today is
important because it is World AIDS Day.
I know,
another calendar day hijacked by a social awareness cause, but this one is
different. It is easy to talk about hand washing- it is simple,
straightforward, and is appropriate to talk about at all dinner tables.
However, HIV is a virus that is most commonly transmitted through contact with
sexual fluids- and that comes with a huge stigma. A stigma that keeps
conversations about it not just away from the dinner table, but out of the
family, school, church, community, and government. It’s literally killing us.
HIV/AIDS
seems like ‘old news’ in the US. We’ve all seen Rent. It’s been a global epidemic for thirty years- that is longer
than I have been alive. I don’t know a world without AIDS. Yes, medical
treatments have improved greatly in my lifetime, and discrimination against
those living with HIV has decreased within the US. But we’re not there yet.
AIDS was
the cause of 10% of all deaths in 2013, the second largest killer in developing
nations, and still in the top 10 of the developed ones. There are still 35
million reported people in the world who live with HIV/AIDS, and of them, 1
million of them are US citizens.
In
Panama, a country of just 3 million people, there are 16,000 reported cases.
That doesn’t seem so bad, right? Read that statistic again. 16,000 reported cases. If you don’t know what
HIV is, you won’t get tested for it. If you don’t get tested, you don’t get
treated, and you transmit then die of AIDS without anyone ever knowing.
My
favorite toddler in Playona is Bello. If I thought I had any sort of resources
to do so, I would have adopted Bello in a heartbeat. He lives with my host
family, because for the first year of my service his mother was very sick, and
then in July 2013, she died. Her cause of death is ‘unknown’ but her symptoms
make AIDS a definite possibility- particularly since just days before she died,
she went to the doctors and they said they could do nothing for her.
“Was it
cancer? This? That?” I ask my host family. No, the doctors said it wasn’t. I
ask if it was HIV. “Our race cannot get HIV. She couldn’t have had that.” I
will never know if Bello’s mother was HIV positive, because even if she had
been tested, her family would never admit to it. Even though Bello, his
brother, and his father are at risk, they will not get tested because they do
not believe they can contract the disease, or they are afraid of the
discrimination would come with it. Only in Panama, right?
Not so much.
In Namibia, the disease spread so rampantly through the country in the 1990’s
because their society believed that having sex with a virgin would cure it.
Yes, you read that correctly. And if it didn’t cure you, then it meant that she
wasn’t a true virgin. I’m not going to get into how many levels of messed up
that is, but it is the perfect illustration of what happens when we let stigma
and discomfort keep us from talking about serious issues. Watch out, I’m going
to talk about sex for a minute.
The Quick and Dirty About HIV/AIDS:
The
disease is spread through contact between bodily fluids- blood, semen &
pre-seminal fluids, vaginal fluids, and breast milk. It is NOT transmitted
through tears, urine, or saliva. One of those first four fluids from the infected
person needs to enter the body of a healthy person (usually via more bodily
fluids) in order for the virus to spread. So all forms of sex- anal, oral, and
vaginal- can transmit the disease. If you choose to have sex, the best method
to prevent sexual transmission of HIV is with proper condom use.
Blood-to-blood
transmission of HIV in the States is not common, unless you are a drug user or
sketchy tattoo artist, but if you were to have an HIV-positive family member or
roommate, it is important not to share items that could come in contact with
blood- razors, toothbrushes, manicure equipment.
Getting
tested is incredibly simple and easy. Yes, getting poked with a needle once a
year sucks, but dying because your immune system staged a mutiny is worse. Always
get yourself and your partner tested before becoming sexually active. HIV can
lie dormant in your body for years before you show symptoms.
HIV/AIDS
victims are still people. With access to the right medication, many of them can
live symptom-free lives for quite a long time. They can give birth to healthy
HIV-free babies, and live long enough to raise them. The technology exists to
help them, but right now many are too afraid of prejudice to seek it out. They
deserve and need our respect, support, friendship, and love. We need to talk
about this disease more, if not for us, then for them.
I talk
about HIV/AIDS with kids, teens, and adults on an almost monthly basis. I can
teach you the finer skills to putting a condom on a phallic-shaped jungle fruit.
I play a great game with handshakes and socks, using glitter to simulate HIV
transmission and we make jokes about people who end up with AIDS on their face.
But this isn’t a laughing matter.
On
September 15, 2014, my friend Patrick died of AIDS. He had been a fellow
student with me in the theatre department (theatre family) at UNL and we did
several productions together. Sometimes we bumped elbows as artist and
technician because his artistic priorities and my technical priorities were not
always the same, but we deeply respected each other for our passion to the art.
He was a tremendously positive cheerleader for many of us within the theatre
department and his sudden death was shocking and tragic. We had no idea.
On June
30th, 2014, Patrick didn’t know he was HIV positive. He would find
out a few days later, but he would tell no one of his condition. It wasn’t
until a few days before his passing, when he was hospitalized for the last time
and no longer able to make decisions for himself that his family chose to share
with everyone the news.
It is sad
to hear about the death of a friend, but what is particularly heart wrenching
about this situation is that for the last 2 months of Patrick’s life, in his
most difficult moments, most of his friends, colleagues, and advisors were
clueless to his suffering.
I never
had a chance to talk to Patrick, I am sure that he had many reasons for
choosing not to share his medical condition with others and I respect a desire
for privacy. However, if any part of him chose to remain silent because he
feared the stigma, the shame, the discrimination that still comes along with
this disease, then I’m angry. No disease- not Leprosy, not Ebola, not mental
illness and definitely not HIV can make a person into anything less than a
dignified human being worthy of respect and love.
Since
Patrick’s death, teaching kids about HIV/AIDS has become an entirely different
experience. It’s not about handshakes, glitter, and this mysterious invisible
disease. It’s about teaching kids, teens, moms, and adults to love themselves
by using protection, love their families by getting tested, and to love
HIV-positive individuals when they need it the most.
Today in West Africa it is estimated that 4 people will die of Ebola. And 685 will die of AIDS. It will be the same tomorrow, and the next day, and the next.
My
challenge for you is this: Every time you hear the word ‘Ebola’ this week, reply with a
comment about HIV. Let’s get this out of the dark, both here and abroad. The
developing world may seem galaxies away from your life, but American pop
culture, media, and politics have global impacts. Let’s make my birthday a
positive one.
Is that a Top of the World hat he is wearing? I work for Top of the World and we love to donate hats! He is adorable. I don't know if you remember me Amber but I came to Nebraska for your GA as a Rainbow girl. Glad to see you doing work you feel passionate about!
ReplyDeleteHey! Isn't he the cutest? He's wearing my Nebraska Cornhusker hat. :) Yes, I remember that, I hope that things have been going well for you since then!
ReplyDelete