Me and HIV, The Road to Today
I am so grateful and thankful for being able to have a voice about HIV and AIDS in 2013. Some people have heard or read about my story and my journey of living with both. But I wanted to reshare it.
I originally wrote this on August 8, 2011, but updated it and edited it on December 5, 2013.
In the almost 28 months after I first posted this, I never once reread what I wrote. I lived my story. I didn’t see a reason to read about it. But I am so glad I did. I’ve come a long way since I first tested positive in 2001. To look at my journey from two years ago, when I publicly came out on here to all my friends, former school mates and family — not to mention thousands of strangers — as being a person living with HIV, and see where it’s taken me iskind of amazing and liberating.
I wrote my story from my heart. I simply wrote what I was feeling and how I got from 2001 to 2011, and never looked back. So, it was kind surreal because I felt like I was hearing it for the first time.
This has been an incredibly liberating experience. And, hopefully, one that has helped to educate and inspire others, while breaking stigmas and proving that being positive is more than just a status.
The more we come together as a community of people who are positive,negative, friends, family and allies, the more we prove that a person’s HIV status does not define them. It definitely does not define me.
So, as begin to close out 2013 and look forward to 2014, here is the newly edited story of my journey as a person living with HIV and AIDS. It’s a little long, or so my boyfriend keeps telling me. But it’s not boring. ANd well, the journey of the last 12 and 1/2 years has taught me much about life, myself and how not to be defined by HIV.
My Journey With HIV — And How I Became Positively Jeffrey
On Valentine’s Day 2001, I rushed my then best friend and boyfriend to the ER. He had come down with what we thought was a bad flu. HIV was not the radar as we literally had gotten back our test results that day stating we were both negative. A few days after he was released from the hospital, our doctor called to say I needed to bring Stephen in. I explained how sick he was and asked if it was really necessary. She said it was. And in the flash of that moment, I knew what was coming. Unfortunately, Stephen didn’t. But I thought, our trusted, compassionate doctor who’s been treating us for a few years will be gentle and comforting and sensitive. So, you can imagine Stephen’s utter shock when the nurse, not the doctor, walked in and blurted out, “well, your results are back and your 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, no TV or music, convinced rapture was upon us. The only signs of life in the small corner of his living room, where I sat with a small desk lamp on, sitting at his computer for 96 hours, searching the Web for answers.
Despite spending my entire adult life as a champion of AIDS causes (I lost my first friend to AIDS when I was 20), wearing red ribbon pins, using red ribbon designed checks and chairing the AIDS Walk in Miami in 1995 — even though I was HIV negative — I realized I didn’t know nearly as much as I thought I did. Actually, I didn’t know anything really. The only thing I knew was that my boyfriend was freaking out and there wasn’t time to get bogged down in the emotional aspect of it. 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 to learn as much as possible about HIV and what it all meant. What I learned was so much more than I expected. I discovered there were a lot more people out there living very happy, successful and healthy lives who were HIV positive then I realized. Turns out some of them were friends of mine, and I had no idea. So much for all those theories that you can tell a person has it just by looking at them.
Here are two things that people might not know about me and my diagnosis,three months later: One, I never had an OMG. When my boyfriend found out he was positive, it nearly destroyed him. He thought it was a death sentence. And he was coming apart at the seams, spiraling down into the abyss.
I wasn’t powerless. I had knowledge, and that was power. I knew it wasn’t1987 anymore. In was 2001. And I knew that the landscape had changed; so did 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: I had science and facts on my side here, not some MGM musical song and dance distraction.
I also knew that just because he (or soon, as I will explain below, we) were HIV positive, it did not mean we had AIDS or that we were going to die.
Two: Unlike my boyfriend, I didn’t have a doctor come into the room and give me my news.
I found out from a doctor on my cell phone call while I was at the grocery store. I literally was paying the cashier when the phone rang. There was no one around me. There was no one to tell me it was going to be okay. And more importantly, there wasn’t any time to have dark and gloomy thoughts. First, I had perishables. So, 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.
I walked the block and a half home,sat on my front stoop for about 20 minutes. And then I thought, I could either crumble and let the negativity take over, or I could embrace it and “say okay,this is now my life. So let’s figure out how to live with it and how to goon.” I chose the latter. I called up my boyfriend, then my brother and then my best friend.
And from that moment one, I never stopped long enough to let myself get caught up in some pity party or playing the victim role. I knew I could either let it own me or I could own it. I chose to own it. That strength and attitude made it a lot easier for those around me to be supportive and understanding. I had an amazing support system, and a doctor who specialized in HIV. I pretty much started meds right out the gate.
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 a matter of minutes. It really put things into perspective for me. If Stephen and I could survive a terrorist attack (his office was a few blocks from the World Trade Center and I had a job interview scheduled at the WTC later that morning), we could certainly beat HIV.
Now, here I am, 12 and a half years later, breaking stigmas, curbing the ignorance, getting the facts out there and proving that it does get better. HIV does not define me. Nor will I allow it to stigmatize me or knock me down. Ilife my life positively, literally and figuratively.
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 be tore-exam my perfect, no complicated 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 is better. It continues to get better. Hope is always around, despite all the woes and worries of the world.
Medicine and science has made incredible strides in the last 12 years. Heck,in the last five years. Meds are better and effective. They work. They are saving lives. People are aging and growing old with HIV. And there are new advancements on the horizon, like PrEP and PEP, which are ways that people who are negative can be proactive in today’s ever changing world.
In October, 2004, my t-cells had dropped below 50 and my viral load was over the one million mark. I was admitted to the ER at 6 p.m. with AIDS-related pneumonia. The doctors called my parents and told them to fly in to New York because my chances of making it were slim to none. But anyone who knows me knows I like a challenge, and I don’t like to lose.
Today, my t-cells are over 700 and my viral load remains undetectable. Sure,I have to adhere to my drug regimen. But it takes more time, and often more energy, to shave or brush my teeth. It’s a 30 second moment in my day that,now, is just part of my routine. And yes, I have to watch my diet and my cholesterol. But that’s not because of HIV, it’s because I’m getting older.
Life is full of twists and turns. Whether it’s HIV, a tragic loss of life, a down-turning economy or some other life event, whatever is going on in your life has likely happened to lots of other people. You might feel isolated and alone, but you don’t have to be and you’re not. There are people out here – out there — who understand what you are going through and are willing to help you through it, because it does get better. It gets so, so, so much better.
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.
The world is bright if you look at it the right way.
Those of us living with HIV need to lead by example. Stand up. Put a face toit, and help take the stigma off of it. Be heard. 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.
That’s one of the reasons I created a Facebook group in 2011, called, HIV and AIDS, Getting The Facts, Curbing The Ignorance, Proving It Gets Better. And it motivated me to create a new blog called PositivelyJeffrey in November 2013.
Twelve years ago, people weren’t talking as openly as they are now about the importance of meds and adhering to them. There wasn’t social media or the kind of anti-stigma campaigns or people talking so openly about living with HIV. I did gamble a bit in the first few years and wrongly thought, “I feel healthy and I’m in the best physical shape I’ve ever been, so I’ll take them when I feel like it. Well, that one of the stupidest thing I could have done. I ended up in the hospital in 2004 with AIDS-related pneumonia, an extremely compromised immune system and less than 50 t-cells and a viral load that was around one million. They told my family I probably wouldn’t make it through the night. But I’m a fighter. And I don’t like to lose. So, I fought hard.
And once I got out, I realized I was given a second chance. I immediately committed to going on a three drug cocktail.I had no complications. No side effects. Today, my t-cells are in the 700range. My viral load is undetectable and I never miss a day taking my meds. The bottom line is that meds work. They save lives. They are not the enemy.
A lot of people have asked me how it happened, or do I know the who, what, when and where. In fact I had someone very close to me tell me that they needed to know how it happened in order to deal with it. And all I thought when they said that was no, you don’t need to know. This isn’t happening to you. It’s happening to me. What you need to know is that I’m positive and I need your unconditional love and support.
I find it frustrating that people spend so much time on trying to assign blame or look to put this on someone else. Who gave it to them? Who can I hold accountable? To me, that’s really a waste of time. At the end of the day, we are each responsible for our own actions and choices. Just because someone tells you that they are negative doesn’t mean they are. If you’re going to take the risk, you have to accept that there might be a consequence.
What people need to do is get educated. There’s still way too much ignorance and misinformation out there.The notion that only the passive partner is at risk is a myth and an incredibly wrong.
The bottom line is that you can’t change yesterday. So, walking around focusing on who is at fault is exhausting and irrelevant to the bigger picture, which is that there are proactive things you can and should do. You need to take care of yourself, talk to your doctor, discuss options such as whether to start meds or not and make informed decisions. Also it’s important to surround yourself with people who will be supportive and accepting. I always try to putout there is that you’re not alone and it does get better. There’s no shame being HIV positive.
Plus, the reality is that science and treatments have made enormous progress. It is getting better. We can’t pretend like they haven’t. What’s available now, wasn’t available a decade ago.Now there is PrEP and PEP, which everyone should know about and take advantage of if they can. It’s not our place, nor does help get the message out there, to play the morality police and try to tell two consenting adults what they should or should not do in the privacy of their bedroom. But I do believe it is part of our responsibility to make sure everyone knows not just the reality of HIV,but also what’s available to them, should they be exposed, or what they can do and should to do prevent exposure. They should also know that there are preventive medications out there that can safeguard them from possible exposure or infection, and that there are medications available to them should they be exposed. That doesn’t mean we are telling them it’s okay to go out and get HIV because it’s now manageable or saying HIV is not a big deal. It is a big deal.But it’s a bigger deal if we don’t educate them and give them all the information.
Did I think it could happen to me?Probably not. But it can happen to anyone, at any age. HIV does not discriminate based on orientation, race, sexual preferences, age or any of that.
HIV is part of my story, but it’s not my only story, and it’s certainly not the way my story is going to end. You have to choose life. The only limitations are the ones you put on yourself.