Me and HIV
A Participant in A Day With HIV in America Writes to Prove That It Does Get Better
When I created a group on Facebook called "HIV and AIDS -- Get the Facts, Curb the Ignorance, Proving It Gets Better," the last thing I expected to do was talk about my experience as someone with HIV. But, people need to know that there's hope and life outside of HIV. I'm proof that, as Dan Savage would say, "it gets better."
In February, 2001, my best friend and then boyfriend got really sick. He already had a compromised immune system, so it didn't sound off any huge alarms. On Valentine's Day eve, I ended up rushing him to the ER, and he was hospitalized for a week. The doctors initially ruled out HIV, so it wasn't on our radar at all.
A few days after he was released from the hospital, the nurse practitioner at our doctor's office called to say I needed to bring Stephen in. And in the flash of that moment, I had a suspicion about what was coming. Unfortunately, Stephen didn't and the cab ride to the doctor's office didn't seem the right place to raise the possibility. Plus, I figured, this is our trusted, compassionate doctor who's been treating us for years; he will be gentle and comforting. So, you can imagine Stephen's utter shock when the nurse practitioner walked in and blurted out, "Well, your results are back and you're HIV-positive." Talk about ripping the Band-Aid off.
Stephen literally collapsed on the floor. We had to carry him out to a cab. Then he lay in a self-induced comatose state for four days in his apartment, with the lights turned off convinced rapture was upon us. I sat in the corner of his living room, in a frenzy at his computer for 96 hours, searching the Web for answers.
Despite spending my entire HIV-negative adult life as a champion of AIDS causes, wearing red ribbon pins, and chairing the AIDS Walk in Miami in 1995, I realized I didn't know nearly as much as I thought I did. Actually, the only thing I knew was that my boyfriend was freaking out and I had to be the strong, supportive, loving, and optimistic, glass-is-half-full boyfriend.
There was no Facebook or social networking sites. The Internet was still in its infancy. AOL was where the action was; so I logged into every chat room that I could find to learn as much as possible about HIV. What I learned was that there were a lot more people out there living very happy, successful, and healthy lives who were HIV-positive than I realized. Turns out some of them were friends of mine. So much for the theory that you can tell a person has it just by looking at them.
When I found out I was HIV-positive, I never had that OMG moment that most people do. When my boyfriend found out, it nearly destroyed him. He thought it was a death sentence.
But I had knowledge, and that was power. I knew that the landscape had changed and so had the outlook for people who tested positive for HIV. Everything I read, every person I spoke to, and every doctor I consulted, all said the same: People were no longer dying from HIV or AIDS. It was not a death sentence. I also knew that just because we were HIV-positive, it did not mean we had AIDS or that we were going to die.
Unlike my boyfriend, I didn't have a nurse come into the room and give me my news. I found out from a doctor on my cell phone while I was at the grocery store. There was no one around to tell me it was going to be okay. And more importantly, there was no time for dark and gloomy thoughts. First, I had perishables -- I had to get my groceries home. And second, I already knew it was manageable and I knew that for my boyfriend and for my family, I had to be the voice of reason, hope and optimism.
A couple of months later, 9/11 happened. Stephen and I stood and watched as buildings came crumbling down and more than 3,000 lives were taken in minutes. It really put things into perspective for me. If Stephen and I could survive a terrorist attack (his office was near the World Trade Center and I was to have a job interview there later that morning), we could certainly beat HIV.
I should also add in that my parents treated news about my HIV like they did with learning I was gay. My dad got up, put his arms around me and told me they loved me no matter what. And if either one of them ever felt anything negative about either situation, they've never told me. They've only offered me unconditional love and support.
I have never once thought of myself as living with a terminal illness. I don't believe it will be what kills me. It's been just over 10 years since I was diagnosed, and I'm healthier than I've ever been. Being HIV-positive does not define who I am. It doesn't define my relationships with friends, family, or my partner. And it certainly doesn't cloud my view of the world as being the glass half full.
In many ways, my life today is 100 times better since being diagnosed. It was freeing and liberating. It got me out of my comfort zone and allowed me to re-examine my perfect, no-complications perception of how my life is supposed to be. It allowed me to experience life in ways I may not have otherwise been courageous enough to do. Life has gotten better. It continues to get better. The world is bright if you look at it the right way.
Life is full of twists and turns. You might feel isolated and alone, but you're not. There are people out here who understand what you're going through and are willing to help you through it.
It's okay to be scared. It's okay to be human. And most importantly, it's okay not to be okay. That's part of the process with anything in life.
Those of us living with HIV need to lead by example. Stand up. Put a face to it, and help take the stigma off of it. Put your hand out to help those struggling. And for those who are HIV-negative, you need to live life with an open, unconditional, accepting heart.
Together, we have an enormous power to "be the change we want to see in the world." We have the ability to inspire and get the message out there for people to get the facts, ignore the myths, and prove that life gets better.
Jefferey Newman is a journalist of 20 years, having written for most of the major gay media, including The Advocate, POZ_, and the_ Windy City Times_. You can find his Facebook group here and visit his website, jeffreynewman.com._