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:
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.
To which he replied:
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.
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.