Tuesday, April 9

H- HIV

Daniel, one of the main characters in my third novel Hanging by the Moment is one of nearly 2 million  Americans, living with HIV. Two million.
 
When I started writing Hanging by the Moment, I didn't set out to write a book about a man living with HIV. I'd touched briefly on the subject of HIV and what it means to the people around you in my second novel, Bound: Forget Me Knot. In Bound, Henry's has a sister and his best friend  are both HIV positive (although the reader only knows about Henry's sister, I never revealed that David was also HIV positive. Yes, authors know quite a bit more about the characters than we sometimes let on  ;-)  It's not really because we don't want to tell you, it's because we try very hard to only put on the page the things that are important to the story. Henry was with David ages ago, so it's not relevant; he lives with Jenn, so it is quite relevant.)
 
That and the general subject matter of Bound made it a pretty intense book to write. So when I started my next project (which would eventually become Hanging by the Moment), I wanted to write a nice, light, fluffly little story: boy meets boy, boy and boy fall in love, overcome a couple of obstacles, and live happily ever after. I'd just taken a job in a restaurant that's well...interesting is one word to describe the place. If you read Hanging by the Moment you'll get the full details--and I only wish I was exaggerating. I created a cast of totally new characters, NONE of the characters in the book are based on real people, per se, just real situations (kids who don't want to follow in their parents' footsteps, a parent with Alzheimer's, and a restaurant that's falling apart at the seams). I already had my setting, so next I came up with a general premise, who are my boys and how do they meet, and started writing. 
 
Possibly only fellow writers will fully understand what happened next. I was lying down, taking half a nap, thinking about Daniel, the super sexy delivery truck driver, and Pasha, the over worked, under appreciated cook/waiter working in his father's struggling restaurant, when Daniel simply leaned over and confessed to Pasha and me both that he had HIV. He didn't tell me how he'd gotten it, he just told me that he had it and that was the story I was going to write.
 
And there ended my nap. I needed to get up and start doing some research--and the more I did, the more I had to do, because I'd only thought I had a handle on what HIV is. I mean, I know the basics, I have as good an idea as the average layperson of where it came from and how it got introduced into human beings. I'm aware, more or less, of how it spread so quickly and why (at least in the United States) it's still incorrectly stigmatized as a "gay problem", when in reality HIV doesn't discriminate. It's happy to occupy any body it finds itself in: male, female, anything on the in between, young, old, gay, bi, straight, black, white, brown, red... as a virus, HIV doesn't have the capacity to know or care what its host looks like or with whom they sleep or share needles.
 
I was born in 1969. I remember, at least in a vague sort of way, when the first cases of AIDS started to make the news media (I managed to miss the era when it was still being called GRID, I was probably just too young to pay that much attention to the news). I've seen An Early Frost. HIV and AIDS scare the snot out of me. Which is why I do NOT understand "bug chasers" (people who intentionally try to get themselves infected with HIV) or anyone who treats it like it's no big deal: all you have to do is take a pill and you'll be fine. (You can follow this link to an awesome documentary on You Tube called "The Gift").
 
No, HIV isn't the death sentence it once was, but those pills are expensive and the side effects are life-altering. Many disrupt sleep patterns, the digestive system (really don't want to gross anybody out, so...well, just think about the last time you had the flu and nothing would stay down). Some cause rash and itchy skin. And yes, it's better than the alternative, but it's no picnic; once a patient starts taking HIV meds, there's no going back. It's a lifelong commitment.
 
HIV also carries a stigma; it's something you do to yourself. It's caused by carelessness. And despite the fact that this is 2013 and we should ALL know better, some people still treat those living with HIV like lepers. (By the way, I don't agree those first few statements; even if someone contracted HIV as the result of a momentary lapse in judgement, I don't for one second think it should be held agains them for the rest of thier lives.) If you don't think the stigma is that bad (I know I didn't at first), read this, or this, or this. Yes, there are some positive responses (thankfully), but it's the tone and ignorance of the negative responses that gutted me: people comparing dating someone with HIV to playing in traffic, or advising the asker to get out of the relationship (with someon who has HIV) as fast as possible because you'll never have kids and probably end up dead yourself. I wrote an blog post on the subject of HIV and dating a while back where I highlighted the worst of the worst. It seems like it's even harder to come out as positive than it is to come out as gay or bi.
 
And yet, without wanting to stigmatize anybody, it disturbs me to the core that there are still people contracting HIV in the United States and other "First World" counteries--places where we have access to education and prevention. Preventing HIV is easy: Use a latex barrier (either a condom--male or female condom--or a dental dam, depending on the activity in question) every single time you have sex. Use it correctly and use it consistantly. It's that simple. (It's just as easy as NOT sharing needles). Yes, condoms break (usually when they're expired or handled improperly) but in the event of an accident, seeking medical attnetion immediately seriously reduces the chance of becoming infected with HIV.
 
But there are over 1000 new cases of HIV amongst young people every month. There's a new case of HIV in the United States every 9.5 minutes. One in five people don't even know they have the HIV.
 
Some of them don't want to know.
 
Why? Because ignorance is bliss, right? Yes. It is. It's also deadly, and not just to the people around you. Having HIV means having a compromised immune system, it means having to take care of yourself better than the average person; it means regular doctor visits and antiretroviral drugs. It means telling everyone you want to become intimate with that you have HIV; it means safer sex, every single time.
 
It means living with not knowing if that awesome person you met at a party last night is going to accept you and take a chance on dating you despite the HIV, or if they're going to run for the hills--or if their friends are going to pressure them to run for the hills. It means living with people making assumptions about how you became infected in the first place.
 
It's a viscious cycle and the ONLY way to break it is through education and awareness.
 

Tomorrow, April 10, is

 
You may not think we need another awareness day for HIV and AIDS, but almost 40% of new HIV cases occur in young men and women between the ages of 13 and 29, and only 23% of sexually active high school aged kids have been tested for HIV. Those are staggering numbers. I don't know if more kids are getting infected because schools aren't teaching safe sex as rigorously as they did when I was in school or if kids have bought into the idea that HIV is no big deal, or if maybe they just think "it can never happen to me". But it can. And it is. And it needs to be stopped.
 
Here are some resources to learn more:
If you're like me, you look at facts and figures like this and wonder "what can I do? it seems so overwhelming!" You can do what I'm doing: write a blog post. Maybe not today, but next month, when the mad A-Z hop is over. You can wear a ribbon. You can talk to your kids and grand kids, not just about safer sex and preventing the spread of HIV, but about accepting those who have it with compassion and understanding and ending the stigma.

You can give somebody a hug.




 
 
 
 
 

4 comments:

Angeline Trevena said...

You're right; it's shocking how many people are still contracting HIV, and still thinking 'it can't happen to me'.

I'm from the UK; the nation famed for being repressive and embarrassed about sex.

Kids are getting much more sex advice from their friends rather than proper sources, and so all the old myths - you can't get pregnant first time, only gay people get AIDS - are being passed from generation to generation.

Education is good, but it needs to be brought out from behind closed doors. We need to shout it, not whisper it behind our hands.
coffintreehill.tumblr.com

H.B. Pattskyn said...

"Education is good, but it needs to be brought out from behind closed doors. We need to shout it, not whisper it behind our hands."

Wonderfully said!

sorgbarn said...

Very interesting post. I'm only a couple of years younger than you and like you I remember the not quite s early days of AIDS and HIV, through media mostly. Of all the news paper headlines I read as a kid it's those about AIDS that made an impression; the death estimations from the 80's have luckily been proven wrong, thanks to modern medicine. Today the subject no longer makes big scary headlines, and even in Sweden, where I'm from, its just one of many STI:s that's mentioned in sex ed, and where the strategy in the 80's (my school years) clearly was to scare young people into using condoms, school and textbooks today seem to treat it more like any other STI, pointing out that it is no longer a death sentence. But like you said, no one tells you just how life altering the medicines are, and no one ever talks about the risk of the virus mutating or strains of the virus becoming resistant to the treatments.

I'd like to add that the latex condoms must be used with water or silicone based lubrication, not oil/fat based, and condoms used with too little lubrication, natural or artificial, puts a higher strain to the material. Every time I read about characters using condoms with lotions and massage oil or something like that I silently cringe. If you read something enough times you may end up believing its true and okay.

Also, I'd love to read about Daniel and Pasha. Where and when will it be available?

H.B. Pattskyn said...

Great point about water based lubricants only and how if readers read something enough times there's the very real chance they'll start to believe it's true/okay. That's one of the major reasons I feel so strongly about characters in romance novels using condoms--or at least discussing the reasons they're not going to, panicking if they screw up, etc. Just like in real life, there should be consequences in fiction.

Okay off my soap box :)

I'm hoping Pasha and Daniel's story will be contracted soon. It's been under consideration *forever* (in real time less than two months, but it feels like forever at this point.)

Please check back; I'll be updating theHanging by the Moment page (tab up top) as I get more information on publication.