I’m Coming Out – Again

It’s time.

After more than a year of struggling silently with something that happened to me, I’m ready to talk.

 

A year ago I was very near death.

A year ago I came within hours of breathing my last breath.

A year ago I was dying of AIDS.

 

Please understand that this is very difficult for me to talk about. However, as someone who’s never lived a day in a closet in his life, I just can’t do it anymore.

I’m choosing to speak about this mostly because it pains me to think that there are people out there without the same ability as me to optimistically navigate their way through the world of stigma attached to those of us living with HIV.

Because HIV is transmitted either sexually or through drug use, often times those of us living with the disease are cast off as careless sluts or drug addicts, and shamed into the closet by the rest of society.

But so what if you are a drug addict or a “slut?” Why don’t you deserve the same level of compassion as everybody else?

The answer is, you do.

I battled with sexual compulsion and drug abuse for years after being raped and sexually abused from the ages of 4 to 6. Throughout my life, I’ve struggled mightily with demons and, at a certain point, wanted to die in order to erase the pain I was in emotionally. Once you hear my story, I defy you to look me straight in the eye and tell me not only that I deserve to be HIV positive, but that I do not deserve compassion for what I’ve been through.

Now here’s my story.

 

Physically, my journey has been that of a battle for my life. I didn’t know I was HIV positive when I was rushed to the hospital with a bout of pneumonia that had had me bedridden for 6 weeks with both of my lungs 90% saturated with fluid back in March of 2012. I needed to be sedated for 5 days and kept in the ICU for several days after that while my lungs were drained. Upon waking up, I was a skeleton of myself, weighing a mere 124 lbs. (As a 6ft tall somewhat muscular guy, you can imagine what 124 lbs looked like on my frame.)

I’ll never forget the conversation I had with my doctor the day I awoke from my sedation. It went something like this:

DOC (shaking his head and looking confused): Andrew, what took you so long to get to the hospital?

ME: I couldn’t afford it.

DOC: Do you have any idea how sick you are?

ME: I mean, I’m in the ICU..

DOC: But, do you have ANY idea how sick you are?

ME (weak, but still a wiseass): Are you really going to play 20 Questions with me after I just woke up from a 5 day nap?

DOC: When was the last time you were tested?

(I looked down with a wry smile, conceding that I knew what was next)

ME (ready to hear the words): It’s been a while.

DOC: You’re HIV Positive.

ME (half-smiling): Ok.

DOC: Are you ok? It’s rare to see someone so calm after being told news like this.

ME: What choice do I have? It is what it is.

 

Between all of the years of self-loathing reckless sexual behavior, I had been prepared for this day to come for a long time. To be honest, I was a little surprised it’d taken this long.

 

DOC: What do you know about the numbers we measure in HIV patients?

ME: I mean, I’ve heard about T-Cells – that’s about it.

DOC: Well your viral load (which measures the amount of HIV virus in your blood) is 393,000 – which is high, but not nearly as high as I’ve seen it in other patients. Ideally, the goal will be to get to you to undetectable, where there’s no virus in your bloodstream. Your CD4 or T-Cell count, which measures the amount of special disease-fighting white blood cells you have, needs to be above 200 in order for you to be considered healthy enough to fight disease.

ME: Ok, is it above 200?

DOC: Andrew, your T-Cell count is 12.

ME (shocked): 12?

DOC: Yes. 12. You were hours possibly a day away from dying. You are very sick.

I spent the next 14 days in the hospital recovering. As if watching daytime television wasn’t enough torture, I was in immense pain and was still having an incredibly tough time breathing. I couldn’t even get out of bed to take a shower. (I’ve been through some pretty humiliating things in my life; however having nurses giving you sponge baths in a hospital bed ranks pretty near the top of my rock bottom.)

The nurses were amazing. They comforted me and really took care of my every need. The worst part of the entire ordeal, however, came the first time I saw my legs. Since I’d been lying in bed for more than 6 weeks without standing up, the nurses wanted me to sit in a chair near the window in order to keep blood flowing through my legs. Once they pulled the blanket off my legs, I instantly became very emotional. My legs were skeletal, boney and all of the muscle I’d built through years of playing tennis was gone. They looked like twigs; it was devastating.

The first time I stood on my feet, I fell. The nurses had to hold me up to help me to walk. In essence, the disease had eaten away all of my muscles and I had to learn how to walk all over again. But I did it – day by day, step by step for 2 weeks. Every minute of every day was hell, however – plain and simple.

On 16 April, I was finally discharged from the hospital. I needed to be wheeled out and helped into my mother’s car. It made me sad knowing that just 7 years ago, my mother had had to care for her husband while he died of brain cancer. Would she have to care for her oldest son too while he died of AIDS?

Luckily, no; but it sure wasn’t easy.

I spent the next two months going from one doctor’s office to another; having my blood drawn several times per week, having my heart tested, etc. I was still extremely short of breath and had a difficult time getting around on my own. I was prescribed A FUCK TON of medications. At one point, I was taking 28 pills per day – HIV meds, anti-biotics, anti-fungals – honestly I forget what the rest were because there were so many. Going out in public was humiliating because of how sickly I looked. All in all, I lost a whopping 65 lbs going from 189 to 124 in a matter of weeks. I had to buy new pants and shorts to fit into, and I wore long sleeves well into the summer anytime I went out in public, in order to hide my embarrassingly boney arms.

I began a physical therapy program and over the next several weeks began building my strength back up, and I took all of my daily meds religiously. My CD4 count slowly began to rise and my viral load became undetectable in a matter of weeks. I gained weight pretty steadily and now stand at a solid 180lbs. My CD4 count?  Over 300 – and rising!

Needless to say, I’m extremely lucky to be alive right now – a fact I try not to lose, no matter how great I feel every day. While the first few weeks of being on HIV meds were difficult, they saved my life; which brings me to what really drove me to write this piece in the first place.

A couple of months ago, I watched the Oscar Award-winning AIDS documentary How To Survive A Plague and I immediately knew I needed to tell my story.

In How To Survive A Plague, we learn that the medicine HIV patients use today is with us thanks in large part to the people at ACT UP, an AIDS activist group who worked tirelessly throughout the 80s and mid-90s to get the US government to acknowledge AIDS as something other than a “gay disease.” The documentary chronicles the lack of response to the AIDS crisis, particularly during the Reagan and Bush administrations, and the consequences that followed; millions of deaths and the loss of an entire generation of gay men (as well as plenty of people in general – gay and straight).

In a nutshell, I owe my life to the countless number of activists that came before me; all featured in the documentary. Because of them, these days AIDS is no longer a death sentence and it’s more manageable than ever before thanks to medicine. (One of the first HIV positive men I met has been positive for over 30 years and is still going strong today!)

One of the men who led the fight for better medication to treat HIV was a man named Peter Staley. In the documentary, you witness his tireless activism; getting arrested during protests and in many other ways. While I find the word “hero” to be overused, I can’t think of a better way to describe everything that he and his friends at ACT UP did.

After I wiped away the tears shed towards the end of How To Survive A Plague, I wanted to find Peter Staley to personally thank him. Thanks to Facebook, I was able to, and I sent him the following message:

Peter,

I just finished watching How To Survive A Plague. As an HIV+ male who literally came within hours of dying from AIDS just one short year ago, I needed to find a way to thank you. I wouldn’t be alive right now if it wasn’t for you and the countless other activists risking their lives and pressuring the government to come up with the HIV drugs that I take today and will continue to take for the rest of my (hopefully long) life.

One year ago my CD4 count was a mere 12 and my viral load was through the roof. Today, I’m undetectable with a CD4 count of 300 and rising.

I’m generally kind of a sap anyway, but I’m literally in tears as I write this to you. I can’t thank you enough for everything you did and everything you continue to do. You are a large reason that I’m alive today.

Andrew

 

To which he replied:

 

Hey Andrew,

I’m really glad you saw the film, and took the time to write these warm words. Those years portrayed in the film were surreal, and very special. I got to witness our community rising up, discovering its power, and making a difference. I still feel humbled to have been a part of it all.

Sorry to hear about your very close call, but am thrilled you’re doing well now. Life can be pretty great, especially friendships, if you fight for them. Build a good support network, and don’t treat your HIV status like a scarlet letter.

Cheers,

Peter

After reading his response, I began to cry.

I’ve got a very thick skin and I don’t tend to care what people say. While I don’t often speak about how tough my life has been, the reality is that I’ve had a very very very tough time, indeed. I’ve struggled with sexual compulsion, drugs, confidence in both my appearance and in my intelligence. I’ve had demons from my past attempt to kill me time and time again. However, after once being convinced that I would die before the age of 30, I’m somehow here at the age of 35. While my life is still a mess on paper, mentally I feel stronger than ever. For the first time in my life I actually want a future. I’d love to get married one day and who knows? Maybe even have children?

But make no bones about it, every single day is a struggle for me. As a result of becoming so ill, it’s very difficult for me to last through a full day of work. However, if you ever met me, I can pretty much guarantee you that you’d have no idea how much I struggle. While I’m generally a pretty sarcastic guy, I’m also extremely positive (no pun intended) and you’ll never once hear me complain about my illness.

What took me so long to write this? Well, to be honest I’ve been scared of how people would view me. Are they going to find me less attractive? Are they going think I’m dirty? Are they going to run away scared from me?

What finally got me to write this piece lies in the last sentence of Peter Staley’s email to me. I realize now that for the past year I have been treating my status like a scarlet letter. But the only way we’re going to be able to destroy the ignorance and dispel the stereotypes and myths about those of us living with HIV, is to do so openly and without shame. So if you’re living in the HIV closet, come out and let your friends know.

To those of you actively creating an environment where shame exists for those of us living with HIV, please stop. The next time any of you consider making ignorant comments about people living with HIV/AIDS, think of my story and realize that your words of hate are directed towards people like me who already live with a ton of debilitating shame every day. Treat us just like you would any other person. Befriend us, date us, have sex with us (with a condom, of course). Put all of your preconceived notions away; shut the door on your own ignorant thoughts and open that damn closet door. Invite us into your lives and into your hearts. Remember – we’re just like you – we just have to take a few more pills every day.

Anderson Cooper and The Glass Closet

Of the many obnoxious media-fabricated terms (zero tolerance, too black, etc), the one that’s been pissing me off the most of late is “the glass closet.”

What is the glass closet?

Well, the glass closet is a place created by gossip columnists, such as Mike Signorile and Perez Hilton, to put pressure on allegedly closeted gay men and women to come out of the closet. A closet is considered to be made of glass when someone, such as Anderson Cooper, is openly gay in his personal life, but hasn’t yet come out in his professional or public life. And while I understand the activist strategy behind the creation of the glass closet, I do not agree with its existence whatsoever.

Here’s the thing: there are many different types of activists – those of the “we’re here and we’re queer” variety who believe that the louder they are, the more attention their issue will receive in the mainstream media and, thus, trickle down into society; those who believe actions speak louder than words; and those who speak up through their art, journalism, writing etc. ALL are important. Interestingly, none of them can exist without one another – which is why I’m a little frustrated.

Why can’t we all realize that we’re working towards the same goal?

Of the different types of activists I mentioned above, ironically the most closed-minded and conservative of the bunch, are the loudest of all. They have an extremely myopic and absolutist point of view about the world, and have no interest in entertaining other ways of thinking. If the “we’re here and we’re queer” queers bust open the doors, the more tempered activists keep them open. But what I’ve come to find is that often times (but not always) the loudest activists are a little older, and have a tough time relating to younger activists (and vice versa) – leaving so-called ‘communities’ in total disarray; not relating to one another.

While struggles between older people and younger people are certainly nothing new, the gay male community feels like an out of control high school cafeteria as opposed to a united force. Older gay men who lived through everything from the Stonewall riots of 1968 to the AIDS crisis of the 80s have spent a good majority of their lives fighting for the lifestyle and rights that we younger gays now enjoy – AND sometimes take for granted, I might add. But with the recent comings out (coming outs?) of Anderson Cooper, etc, the bickering around the “glass closet” has been louder than ever – and it’s mostly coming from older gay men who believe Anderson should’ve come out sooner.

When Anderson (of the actions speak louder than words/journalist activist variety) came out of the closet a couple of weeks ago, I had the same reaction that many of my 20-30-something friends had: “And?”

You see, in 2012, coming out of the closet is not as big of a deal as it was even 5 years ago; largely due to the efforts of the men and women that loudly came out before us. It’s a good thing, and while I know the pressure needs to be kept up, there are ways to do it and ways not to do it. Creating a glass closet is not the way.

Here in NYC (and in many other circles across the country), Anderson Cooper has been known to be gay for years. Why didn’t he come out publicly and declare his gayness? I have no clue, but it’s none of my business and none of yours either. Yes, he’s a public figure – but does that mean he must adhere to some kind of gay rulebook just because he’s well known? I mean, for what it’s worth (and I think it’s worth a lot), Anderson has devoted countless segments on his show to the bullying crisis in America. One could argue that his entire show portrays Anderson as a quiet activist who reports stories of injustice – no matter the type. He lets his journalism do the talking.

So, what’s wrong with that?

The argument for following the gay rulebook is something that Mike Signorile and Perez Hilton have been preaching for years. They believe that by not coming out of the closet publicly, people like Anderson Cooper send a message of shame to the rest of the community, country, world, universe, solar system, etc – especially to those in the closet.

I disagree.

Is the world a better place for having Anderson out of the closet? Sure. But let him and other public figures do so on their own terms. Shame is something that is created. In the case of the glass closet, the shame behind it has been created by the media – not the person inside it (Anderson). Unless you’re watching Sex & The City, glass closets don’t exist. They’ve been fabricated by the media as a way TO SHAME the people supposedly living inside them.

As someone who’s spent a good portion of his life living in shame created from sexual abuse, I can tell you right now that it’s an awful feeling – one that you would not wish on your worst enemy. <—— See that word? Enemy. In essence, people such as Mike Signorile and Perez Hilton are creating more enemies than friends within their own community. Most people I know have never heard of Mike, but everyone I know despises Perez Hilton – largely because of what he’s done to ‘out’ the personal lives of his fellow gays.

If people such as Mike Signorile and Perez Hilton are not going to evolve with society, then maybe we should help them to realize that it’s not the private lives of public figures, such as Anderson Cooper, that should be held responsible for holding the torch-of-societal integration of gays. Being an activist is a choice, not an obligation. If you want to really help to change the small minds of middle America, people need to be able to come out on their own terms. Instead, why not spend your time helping to educate ignorant parents about how to support their children through their journey?

Who someone has sex with is their business. The kind of sex they like is their business. Who you are in the bedroom and in your personal life is not a juicy piece of gossip. The real shame is in people such as Mike and Perez making people feel a-shamed about their own personal decisions. Shaming someone is an awful way to get your point across. I appreciate the intention to ‘normalize’ and integrate gay people in with the rest of society, but there are better ways to do it than trying to make public figures speak about their personal lives.

Fred Hystere

The Sad Reality Of Madonna In 2012

Madonna still interests me – though more from a business perspective than as an artist. I’ll always buy her records and enjoy them. However, I find myself somewhat disappointed by what she’s become and increasingly more thankful for the emergence of Lady Gaga.

Perhaps it’s representative of where she is in her life right now, but Madonna no longer pushes the envelope musically, politically or really in any other way these days. She’s certainly earned the right to do whatever the fuck she wants. But I guess I’m realizing that once some people get to a certain place of success in their lives, they’d rather sit back and enjoy it – as opposed to continuing to be an outspoken thorn in the establishment’s side (as Madonna once was).

She’s reached living legend status and has single handedly changed the way we live – never mind the face of pop music. Without Madonna using her pop platform as an inclusive force of good by bringing sexuality (both of gays AND women) into the mainstream, we wouldn’t have made the huge strides as a society that we have in the last 30 years. But as it relates to her as a person and public figure, I’ve become increasingly less of a fan.

If there’s one trait in people I can’t stand (and there are more than a few), those who use their ego negatively has got to be at or near the top. Thus, I don’t appreciate the snarky attitude towards Lady Gaga that Madonna has publicly employed of late. I get it – Madonna is ‘The Queen’ and whatnot. But other than to sell a few records, why on earth would she want to throw a wedge in the public development of an artist as important as Lady Gaga? Does it always have to be about business?

Humility is one of the most attractive qualities a person can have and, again, I get that it’s not something Madonna’s trait-cup runneth over with. But I guess it’d be nice to see Madonna pass the torch to Lady Gaga respectively, as opposed to (still) being overly concerned with the need to build her own image at the age of 53.

However, therein lies the sad reality of Madonna in 2012: Nowadays she’s a brand first…and an artist second.

Friendfactor (PLEASE READ & SHARE!!!!)

Hey everyone!

A couple of weeks ago, I had the pleasure of meeting the founder of a really brilliant new website called Friendfactor and I want to share the site with everyone I know!

Friendfactor is a nonprofit website that brings together heterosexual allies for gay rights and makes it easy for them to help support the fight for equality their gay friends and family members strive for every day. In the history of the world, every civil rights movement has needed allies on ‘the other side’ in order to gain steam, and the gay struggle for civil rights will be no different.

It doesn’t take a genius to know that I have the mind of an activist when it comes to many issues including gay rights, women’s rights, etc. In fact one of the reasons I launched Fred Hystere to begin with was to help highlight some of the blatant civil rights violations that continue to plague our country.

Being gay has never defined me and I’ve always had way more straight friends than gay. Like me, many of my friends are activist-minded and want to help, but just don’t know where to begin. Most of my friends are so busy these days that they don’t even have the time to keep up with the news and, consequentially, have no idea that, as a gay man, I have less than 75% of the basic everyday rights that they have simply from being born heterosexual.

I’m lucky enough to have the support and love of many friends and I’m confident that at least 50%-75% of them will join me on Friendfactor and help spread the word. I’m asking you to do the same. Check out the video below and then please please please please please please please go to http://www.friendfactor.org to join celebrities and politicians such as Chelsea Clinton, Sarah Silverman, Kirsten Gillibrand and more who have all become Friend-setters on Friendfactor.

Thanks, as always, for your continued support!

Fred Hystere

http://www.friendfactor.org

http://www.facebook.com/Friendfactor

http://twitter.com/#!/friendfactor

http://www.youtube.com/friendfactorvideo

 

Friend Factor Final 11_8 from Friendfactor.org on Vimeo.

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