Four years ago today I thought my world had ended and I was going to die. Four years ago this hour is when I sat sobbing on my kitchen floor, trying to somehow comprehend the meaning of those three words I had heard earlier that day.

On July 5, 2001 at 10 am I found out I was HIV+. Four years ago today.

And every year that followed that date, for every celebration of Independence Day, I reflected on how that news affected my life, how it had changed the very core of me and how it altered every aspect around me. Four years ago today I was scared, angry, confused and lost.

Today I am empowered, confident, secure and joyful about all that has changed in my life because of those exact same three words. Today I am employed because of those three words. Today I am packing up my life and moving to a new city. Today I celebrate my anniversary as the day that created a whole new dream for me. A dream I actually get to live out and not die for. A lot has changed since that morning of July 5th 2001.

Today I know that no matter where I end up or what happens to me, there is a place I can go to where I know I am loved, wanted and respected. Today I know that if I should ever need to escape the insanity of the world or find an understanding ear, all I have to do is to go home. Home to Tarzana Treatment Centers. A place that taught me not only how to survive these last 4 years, it also taught me how to start living again. The people I have met through TTC are friends that love me for who I am now, faults and all. The love, friendship, support, guidance and encouragement I received each time I walked into the lobby is what, at first, kept me alive and then gave me the courage to grow as a person.

In those first years, whenever I looked at how my life was before this date I would sigh and wishfully dream I had it all back. I wondered what my life would be like now, where I would be now, if I had never heard those three words.

Today, four years later, I look back at that same old life and am thankful that it is no longer my life. I am grateful for all I have learned in these last 4 years. I am grateful and blessed to have made such amazing new friends. I am lucky to be where I am, to have the opportunities I have available to me, today, because of those same three words.

Independence Day is past, so is my old life. Maybe that is why this year; I waited until the day after to write. Because I write for my future, not my past.

My name is Sven.

People who survive a plane crash often suffer from survival guilt asking themselves why they continue to live when others died. Holocaust survivors are another group of people that deal with this kind of guilt, being the only remaining member of their entire family or town to survive the concentration camps.

People who survived a house fire that killed others in their family may suffer as do people involved in a car accident. The list is long, very long. And somewhere close to the bottom of the list, barely even noticeable, is the lost survivor.

Imagine being 30 years old and being told that you have contracted a virus for which there is no known cure. There is barely even a name for it. Most likely you will die before turning 35. Imagine having to tell your parents that in all likelihood they may see your return to heaven as they saw your arrival to earth. Imagine watching your friends, who also were dealt the same virus, die sometimes 5 months after they found out.

Imagine that.

Now fast forward 22 years and you are still alive. Imagine having spent every last dollar you had tucked away, thinking the clock was ticking, only to live long enough to start collecting Social Security. Without any kind of financial resources left, you are left to truly live of Social Security alone.

You have outlived your parents and most, if not all, of your friends. Yet you are still standing. The last time you caught the flu, you were convinced that was it: last call before check out. Imagine recovering from that flu but having it given to your elderly father who was too weak to fight it and died because of the complications YOUR flu caused.

Imagine being a person that does not belong to any kind of statistic because your statistic was never expected to have occurred.

Imagine that.

You have beaten the highest of odds and are still standing. If you would have placed a $5 bet that you would live this long, your pay out would have made you a very rich person. That is how high the odds were that you DIDN’T make it to this point.

A truly amazing accomplishment, congratulations on surviving! In exchange for staying alive this long, you are now allowed to live a phantom existence. A phantom existence in a society that never really counted on you still being here.

There are no long term benefits calculated or allotted for you. There is no support system organized; there are no studies, seminars, groups or any other kind of reference you can turn to. After all: you were supposed to be dead. You don’t know how to deal with old age; you weren’t SUPPOSED to have to deal with old age. Here you are, being forced to deal with issues that you had not accounted or planned for: retirement benefits; health issues due to aging; you are about to enter your “Golden Years.”

So you try to look for something, someone that can validate your existence; someone who was there when you first found out you were going to die. Yet there is no one left, no point of reference to go by.

No validation for your existence, no matter where you look or whom you talk to. They all have that same look in their eyes. That look of surprise and horror: YOU WEREN’T SUPPOSED TO BE HERE! HERE, TODAY.

You are supposed to be dead! Why aren’t you dead??

Imagine all that.

Talk about survivor’s guilt.

Ask the lost survivors: the 20 year survivors of HIV.

My name is Sven

Today was World Aids Day, December 1st.

A day which, unlike Independence Day or Memorial Day, didn’t entail a major sale at Macy’s, Robinson’s May or even Wal-Mart. As a matter of fact, when I read the E-version of the LA Times today, I had to make an effort to find the side article that even made reference to World Aids Day.

I spent most of this afternoon at the Tarzana Treatment Center where there was a local exhibit. There was part of the quilt, artwork, a time line, poetry, stories about testing positive and stories about survivors, there was even a Wheel of HIV game. And there was lots of laughter and smiling faces.

I have been to Shanti support meetings before, where you sit in a room with about 7 other men sharing stories of doom and gloom. I had never been to an event that was summed up by laughter, hope and (for lack of a better expression) positive attitude. And all the laughter and funny quips didn’t diminish the seriousness and intensity of why we were there.

It is estimated that as of today close to 60 million people worldwide are infected with HIV/AIDS. Close to 20 million people have died of AIDS so far. To make these numbers even more staggering then they already are: the population of my home country is 15 million.

Imagine the entire population of your country having died of AIDS. Somebody mentioned that in Los Angeles county alone the number is somewhere around 100,000 people. That is twice the size of my home town.

Close your eyes for just one moment and imagine what that would look like.

All across the world tonight there are candle memorials being held in honor of those who are no longer with us. I have dedicated a candle myself tonight by visiting http://www.candlelightmemorial.org/, I invite you to do the same and while you are there read some of the 1,200 dedications that are left by people from Nigeria, Australia, the US, the UK and even Holland.

When I came home today, I was going over my email and I was reading a note from someone who had seen my ad on a website. In his email he stated that he enjoyed “charging up bottoms,” he enjoyed having unprotected sex and knowingly and willingly exposes his partner to the HIV Virus.

I had to think back to when I had to tell the person who infected me that I had tested positive and was greeted with the response that he had been positive for over 4 years and thought it understood, henceforth he never saw any need to tell me prior. He came across as almost being insulted for bringing it up to him.

I don’t think I will ever grasp that line of thinking, nor do I want to. And for all the things that should have been or would have been understood when I got infected, they should never have taken precedence over the respect for human life. It should be understood that life is precious and as such should always be treated with respect.

HIV is a virus that affects not only those who become infected, but also those directly around the victim. It is a virus that works from both sides of your body. While it slowly and meticulously destroys the body on the inside, it reveals the prejudice, ignorance and hatred of those around you.

And while my body is trying to fight the damage to my cells, it is my soul and mind that have to fight the damage of the ignorance and hatred of the outside world against those of us who are sick. Launching a full fledge attack; HIV wants to kill not only your body but your heart and soul as well.

HIV is a disease, a virus. It is not an easy ticket-to-ride. It is not a “Get out of jail free” card. It is not a weapon of discrimination. It is not an excuse for hatred. It is not a reason for firing. It is not a reason for abandoning. It is not an excuse to forsake respect and decency.

And it is never to be “understood.”

It is a way of life, both mine and yours.

My name is Sven

I had gone in the day before with my friend Lori to get tested. After we left, I told her it would take 5 days before the results would be in, all the while knowing I had asked for the 24 hour test.

Walking in, this eerie sense of calm came over me. I wasn’t nervous, I wasn’t anxious; I also was no longer 100% sure that this time I would get off easy. I walked into this little office, my hopes flaring up high all of a sudden. I sent a quick prayer upstairs. And as I sat down in the chair I noticed his eyes. Looking down onto the paper he just handed me, I heard him say “I’m sorry.”

He is still talking, but all of a sudden I cannot make out one word of what he is saying. I am surrounded by clouds. It feels like I am in a cocoon, numbing my senses, my mind, my heart and my thoughts.

This isn’t real. This can’t be happening to me. I can see the words. They are right there on paper.

But they can’t mean that. How can it say: TEST RESULTS: POSITIVE?

I am negative, NEGATIVE. This can’t say Positive.

Its okay, I can handle this.

My god, I am going to die.

I just need to go home. I’ll be fine.

Shit, how did this happen? What am I going to do? I got to get home.

If I get home, I’ll wake up. This isn’t real.

I can do this, just take deep breaths.

HOW THE FUCK DID THIS HAPPEN?

Stay calm, focus. Where did I park? Why can’t I find my car???

GET A GRIP ON YOURSELF.

Oh my god, this isn’t a dream. Why isn’t this a dream?

I am going to get tested again. And when that one comes back negative, I am going to sue the clinic. Jesus, this isn’t something to make a mistake with! They should know that. I am going to kick somebody’s ass over there. You don’t mess up an HIV test. That’s all there is to it. It is a mistake. It has to be.

How can you be such an idiot! You know better.

It’s your own fault. Idiot. Go home, get high.

I’ll be the first person to beat the virus. Yeah!

Don’t let me die, please.

How am I going to tell my friends? I am so stupid.

I can’t believe I fucked up like this. Now what?

I don’t know what to do!!!! Somebody tell me this is a joke, please?

I can’t be Positive. I wasn’t meant to be Positive. God wanted me to be Negative.

I wonder if I can convert back.

Shit, did you really think you were THAT special Sven? God you’re an idiot. You deserve this just for being so stupid.

I’ll show them how to live proudly with HIV.

I am so scared.

Dad was right, I am a loser. And I just had to prove his point.

I can’t afford to lose any weight!

I couldn’t just get the clap or something…nope. I had to go out and get freaking HIV +.

I should just keep driving, right off the canyon.

I am never going to leave my apartment again.

Dirty, I feel so dirty. All I want to do is take a shower. Wash all of this off.

I can’t breathe.

Scared.

I don’t want to think anymore. Stop thinking. Stop feeling. Get out of my head.

This isn’t happening to me. This isn’t happening. This isn’t happening.

I can’t do this. I just can’t.

What am I going to say? What are they going to think?

Shit, who fucking gave this to me?

Who??

Oh my god.

Who else?

I swear I am going to lose it. I am going to go out of my mind.

What have I done?

God give me strength.

I don’t really remember how I got home after I left the clinic that morning. Somewhere between being told I was HIV + and finding myself sitting on the kitchen floor sobbing, my mind has managed to black out a good 3 hours of my life.

My cocoon is wearing off. The pain is starting to seep in, choking me. My head is pounding with a million thoughts all at once. I throw up in the middle of the kitchen; it is so hard to breathe. The only words coming out of my mouth manage to send shivers down my spine and engulf me in total fear.

I start to cry; “Please, I don’t want to die. Don’t let me die.”

I am a college educated male, I read the paper, watch the news. I am not stupid by any means, yet when it came down to having unprotected sex and drugs, all that went right out the window. Somehow I never really worried about turning HIV+. Partly because I still had that feeling of being invincible (after all, this always happens to “those people” not me,) partly because of the media.

Let me explain that one. I somewhat remember the panic that set in after the world learned about HIV and AIDS. The horror stories, people selling their life insurance and living it up before they would die; Rock Hudson; the “new plaque”. Over the last 10 somewhat years we have made such progress in treating HIV, along with the media’s part in tempering the panic, that we have become a lot more complacent about this. HIV+ is no longer a death sentence; it is now a life long illness. No longer cause for immediate funeral planning, it is now manageable. All it really means is a regimen of pills. Right? Why really be concerned about it? We have done such a great job in down playing the effects of HIV that in the process we have made ourselves more ignorant.

There are “bug chasers”, “gift givers” “conversion parties”. Maybe it is because I am blond, but when is the last time you heard anybody volunteer to get syphilis? Or Hepatitis? I must have missed the invitation to my “Brothers of the Clap” community. Instead of making us more conscious and aware, we have created a group of people who think that HIV is actually kind of “cool.” One night, one guy online actually told me he was looking forward to being bred and take “charged-up” loads. What exactly is a “charged up” load? A load that has had a Red Bull or one that has been in the charger overnight? I really hate to be the one to break it to them, but it’s not like signing up for an AAA membership! It doesn’t come with any frequent flyer miles, nor do you get a free coffee mug and I would gladly cancel my membership at a moments notice. If only I could.

Any of you ever seen “Invasion of the Body Snatchers”? Great movie, isn’t it? I feel like that. The weekend I converted, being sick like I had never been sick before with a fever of 104, that’s when it took over my body and turned it against me. That wasn’t a fever; it was the virus burning down the fortress of my defense, infiltrating my system. And my body only lasted maybe 7 hours before handing over the keys. 7 hours is all it took to erase my hopes, my dreams, my beliefs, and my life. It is a weird feeling knowing exactly when you got sick with this. It isn’t like waking up with a cold one morning, I can actually tell you on what day I converted. That is a very abstract and almost absurd reality. I remember the first time I cut myself after I found out I was HIV+; I just stood there looking at my finger bleeding. And all I could think was that my blood had actually become poison. To this day, I still shower twice a day, hoping that with each shower another layer of shame and guilt will disappear. Maybe by some miracle, it will all just wash away.

Once considered a golden boy, I was perceived as a lucky son-of-a-bitch, tenacious, persistent, an achiever. Now, I can’t hold on to a dream long enough to let it even begin blossoming. I am disoriented inside my own body, still trying to somehow regain control. I am on a mission to recapture that spark. To find that something that made me dream all these years.

Instead, I have spent most of the last two years trying to sabotage all that was good in my life. I, naturally, am in therapy. And while it looks to the world and even to me that I am doing just peachy keen with all of it, I am not.

I went from being the Golden Boy to being unemployed, destitute, unable to make this months rent. I now can count 1 failed suicide attempt to my list of failures. A lot of my friends have parted ways with me, for whatever their reasons may have been. I have become more and more of a recluse inside my own world. There is this overwhelming sense of being too late to catch up.

Somewhere deep inside of me, there is still another battle going on. A battle between my self esteem, social stigma, self projection, self loathing, shame and fear. I am trying to reestablish my identity as an HIV positive male. Not just for society, family and friends, but more for myself. Two years ago, I would wake up in the morning and remember what I dreamed about that night. These days, I rarely dream at all. As a matter of fact, I dread going to sleep all together these days because of the recurring nightmares I keep having. I used to have no time for the past, too busy planning my future but now it seems all I do is putting out fires from yesterday. Trying to cover up my tracks, fighting to stay afloat, it is a struggle to hang on to even just today.

There is a feeling of guilt and shame. Every morning I wake up realizing that I made a decision that completely altered the course of my life. A decision that so far has caused little good. You see, unlike the long term survivors of HIV/Aids, who contracted the disease without knowing anything or very little about it, I was fully aware of the risks I was taking. Unlike a cancer that just shows up in your body, I became HIV+ because of something I did that I knew was wrong. And it is hard to forgive myself for that, very hard.

In all likelihood, until the day comes when I am no longer the one that has to say “I am Positive, is that a problem,” but instead can go “some of my best friends are negative”; I will not be okay with being HIV+.

My name is Sven