On becoming an HIV/AIDS survivor
by Brandon Braud
My status has always been a head-scratcher for my doctors. After being diagnosed six years ago with HIV, my body has not been following the program. My blood work was always good and my viral load always undetectable. What makes this all the more interesting is that I'm not on any type of medication.
Having a life-threatening illness brings your life into a sharper focus. At least it did for me. Every three months I would wait with dread for a week while they processed my blood work. Would it come back bad? Would this be the time that I would have to go on meds? And then I would hear the news that I was doing well. At that point, I would be relieved, but I would also start the three-month cycle between tests all over again, worrying that things like a cough or feeling tired meant more than they actually did.
The results for my last round of lab work came back the second week of June. My doctor told me I was a 'long-term non-progressor,' or a .05 percenter. In laymen's terms, this means that my body is able to keep the virus in check on its own. My doctors also told me that I would not die of anything related to HIV. Upon hearing all this, I became very confused. I felt like I had entered a permanent eye of the storm. Here I stood, my left foot in one camp, my right in another. My first real awareness was that my life was yet again forever changed. Now I was an oddity and not just a statistic. How would I play this new hand?
I was numbed by the news. Talk about a paradigm shift! I had set myself up to believe that I was either positive or negative. Yet the news came that I was a bit of both. Even today, three months later, I'm still grappling with it. It places me in a very unique position as an HIV-positive person. I am left of nowhere. I say left, because I feel left alone. I say nowhere because no one really understand where I am, they just know where I'm not.
When I was first diagnosed with HIV, I saw all of my long-term plans slowly disappear. My goals shifted from retirement investments to funding medication. Instead of planning my next vacation, I would wonder at which point it would be impossible for me to travel. Thoughts of raising a family left me. Life as I saw it was greatly diminished. There would be no "golden years." The only dream I hung onto was buying a house. Owning a home, I could create all the dreams I would not be able to accomplish. It would be a house full of joy and laughter. A place no one would want to leave. It would be the center of my world, a legacy of memories to leave behind and where I would cross over from this world.
After this last diagnosis, the luxury to think about long-term plans has returned. I need to map out a different strategy for my life now. I need to figure out a retirement plan. In the future, I will move into a bigger house to allow for a family and go to Paris, Amsterdam and Italy. Now all that I see ahead is an uninterrupted view of endless possibilities. While I may be one of the lucky few, I am still a member of "the club." I sit in the eye of the storm, the quiet still place surrounded by the raging winds of this epidemic.
I have shared this news with many of my positive friends. All of them have told me this is great news. The first time I heard this I was angry. If it was good news, then it seemed like I was somehow better than they were. For the last six years, I have viewed my status as HIV positive as part of the whole of who I am. I could not accept being treated as a less than that whole. I would not accept from my positive friends that I was better than they are now. One of the few to enjoy such an existence, I'm still trying to accept that.
I think of my brothers and sisters who battle daily with the disease, fighting off nausea and fatigue from meds, wondering when things will take a turn for the worse and when drug failure will hit and leave them with no other options. I think about them wondering if there will be family and friends at their side when they become ill. I feel guilty thinking of finally owning that beach house, traveling to Europe and seeing Paris in the spring. I feel guilty thinking of maybe one day chasing that little head of curly locks around the yard with laughter trailing behind him.
I feel guilty not having to wonder when my HIV status will interrupt my life. It's called survivor's guilt, I know. Ever since hearing the news, I have been asking myself, "Why me? Why was I given my life back?" I just lost my partner to this disease. Through all the heartache, stress and grief, I can't begin to imagine how I would have dealt with this news during that time. Yet I feel he is smiling down on me knowing that I have a mission to accomplish. He will always be a part of the story unfolding.
During the coming days and months, I will be figuring out my next steps. I see a retreat on the horizon, a timeout to asses this new major change in my life and draw up a plan of what to do with this life I've been given back. It seems that there is a reason my life is unfolding as it is. I still cling to the one gift given to me after my original diagnosis six years ago: live for today. But today, I also start getting used to having many more tomorrows.
Braud is the front office administrator at the Human Rights Campaign.
August 26, 2002