‘Being born with HIV meant expecting the worst—I choose to live instead’
Most little girls spend their years planning what their wedding would look like. The dress, the colors, the food, the music that will be playing—all of the bells and whistles. I was the opposite. I was planning my perfect funeral. There was a time when I had planned out what my funeral would look like because I knew I didn't want to be a burden in the afterlife. I knew how I wanted my hair, nails, outfit, coffin and what funeral home I wanted it to be at. I knew who was to speak—and definitely who was not—because my family and friends would go off on the microphone for 20 minutes singing off-key. I knew how I wanted my service and how I wanted the repast. I planned my funeral better than my own wedding that I never did get. I think about that a lot. I planned so hard for that time in my life that I let time around me pass without a life plan. How can you plan a life when you’re so scared that death is just around the corner?
Loss was all around me, from being a child attending funerals for my grandmother’s friends to then attending my parents’, my friends’ and my grandmother’s funeral and then preparing for my own. I never thought that I would have the life that I have now, A wife, mother or even a college graduate. Being born with HIV at the beginning of the AIDS epidemic made life feel so bleak.
Not knowing what was going to happen to the people around you or even to yourself is one of the most unsettling feelings to have. I got to witness how everyone looked like themselves one day and literally a month later seeing the joy and their entire life force stripped from them to the point where they couldn’t recognize themselves or who they had been. By the age of 25, I had been to over 25 funerals of friends who had lived with HIV; by the time I reached 27 I just stopped counting and stopped going to them as well. The pain from losing everyone, coupled with survivors’ guilt and questioning my existence, was too heavy to bear.
I feel like this is the part of the movie where everything fades to black and a mellow yet uplifting instrumental starts to play with the words 10 years later... slowly appears on the screen. As it fades out you see me married, with my son happy and filled with joy, holding hands somewhere in the park. I really wish that was the case, but I’m still struggling every single day to live for myself and to plan for the future.
There was a time when I had planned out what my funeral would look like because I knew I didn't want to be a burden in the afterlife.
Day by day, one step at a time, I have to remember that I’m here for a reason. I’m in a constant fight with myself to not just be alive but to actually live! For me, living is going to my son’s football games and loudly cheering him on because I know that growing up, I never thought it was possible for me to have a child who wasn’t born with HIV. Living, for me, looks like learning how to drive at the age of 35 so I can drive myself to the supermarket and hide in the parking lot and eat the food that I don’t want to share with my family. Living, for me, looks like me finally applying to grad school and not being scared that I will die before I finish. Living, for me, is actually planning out that wedding and walking down the aisle because 14 years of marriage deserves to be celebrated. Last but not least, living for me is not dreading my birthday.
Every year I get so mad and so heartbroken that I’m not living up to the pact my friends and I created about celebrating our milestones. So, I’m going to make that plan and celebrate. Grieving is the easy part. Living your life is the hard part, and that’s what I’m choosing to do instead of waiting for that perfect funeral day to happen.