November 21, 2010
For our World AIDS Day 2010 section, we wanted to capture the diversity of the AIDS community. So, we reached out to people across the world -- mostly those who have never written for us before -- and asked them to guest blog. These columns are written by people who are living with HIV, have been affected by HIV, or work in the field.
It is 6 a.m. and I am sitting on my porch drinking my first cup of coffee of the day. This is absolutely the best part of my day. I empty my mind and listen to the birds with my little poodle mix (which you could call a porkie or a perrier -- they used to be mutts; now they're labradoodles and shitles). I feel his warm little body settled in next to my hip and all is well with the world. No e-mail, texts, phone calls. I don't think about schedules, contracts or packing for the next trip, what I will wear today, and the long list of to-do's sitting in my office. This is the time of day when unsolicited thoughts settle into my consciousness like a fresh blanket of snow. Maybe it's a new way of looking at a painting, the right turn of a phrase for a poem or an idea for a book, blog or column.
This morning as I watched the trees barren of leaves sway in the brisk air, I realize no matter the time and the energy I have spent deconstructing the walls of my life, HIV still defines me, at least on a cellular level. Is it the eight pills I have to take every day no matter what? The safe sex I continue to have with my husband of 10 years? The silence of a morning absent of children?
Ohh. That all sounds so sad. But it isn't. Instead I find it curious -- something to reflect on, or just interesting. I have that luxury because I have access to treatment. I have been positive more than 25 years and I am detached from this life -- a practice I acquired living with two terminal illnesses over the past few decades. (I guess not so terminal! But that's another story).
So with the rambling preamble, this is what I got: Deep inside there is a sadness that the boundaries of my life have been marked out by HIV. There is no walking away from it. Since HIV has the possibility of being manageable, many of my comrades have decided to take different paths -- and along with the U.S.A. as a whole, put HIV on the back burner.
When I recently released a DVD based on a book I wrote on women and HIV, A Positive Life: Portraits of Women Living with HIV, many of the women from the book asked how public of a release it would it be. No worries there -- it was just me and Final Cut Pro. But many said they didn't want any part of it.
I don't think it's shame that prevents them from participating or wanting it to be kept low key. I just think that living with HIV can be such a burden that weighs you down emotionally; and if you are a survivor of many years, you need to put it in the back of closet for a while, or simply break up.
I did that a little bit by reinventing my presentations with non-HIV-related names and content -- such as SEXED, Surviving the Weekend and Sex, Cellulite and Large Farm Equipment. These titles did not even convey a hint that I'm HIV positive. I still talk about my journey with HIV, but now it usually takes up only 10 minutes of my presentation instead of the whole hour.
Paradoxically the bulk of the questions are about HIV; and ironically they are the same questions I was asked 20 years ago:
"Do you have HIV or AIDS?" Technically AIDS, now HIV positive; I don't know, I call it all HIV infection.
"How long do you have to live? Don't know, God's will.
"How come you look so good?" Lots of bed rest. Two terminal illnesses gives you the opportunity for that kind of activity, as well as never having the desire to sunbathe.
"Do you have sex with your husband?" Yes, safe sex has become a habit over the years. It has little to do with barrier sex because I don't think that is much fun, but more to do with intimacy, love and creativity.
One of the oldies but goodies: "How did you get it?" It was a mosquito, really big; or maybe my mother was an IV-drug-using prostitute who used to bite me every time I breast-fed. You have to have a special sense of humor to laugh at my jokes. What I end up telling them is, it was either semen or blood that entered my system through some form of sex.
"Can you get it from kissing someone?" Yes, I still get that question, and I tell them it takes about two buckets of saliva to infect someone and if you are drinking two buckets of spit you have more things to worry about than HIV. I also explain never to kiss someone who is bleeding from the mouth, no matter how hot they are.
So people are interested. Recently Mondo on Project Runway revealed his positive status to the judges. A ploy for immunity from elimination? Nahhh -- his outfit definitely was rocking, or as they say, epic. He heard the usual round of things you hear whenever you disclose, "You are amazing," "I am so honored that you shared that with us," "You are so brave" -- it goes on. He had the usual reaction from holding onto something for so long: relief and tears. Regardless of the fact that there is treatment, it is no less traumatic to disclose.
It is the trauma, drama and burden of living with HIV, not the actual virus and eventual disease, that plague me. This morning as the sun comes up I think about another approaching World AIDS Day. It is a marker for me. It has evolved over the years. In the beginning it was about crisis and desperately trying to get people's attention so they'd take action. Today we are still trying to get people's attention but it often feels less urgent.
For me it means I survived another year, and it is a new year with the curiosity of what will it bring. I will probably speak at a number of events; it is a day people all vie to book me. I will charge larger sums of money. (My rationalization is it will pay for my medication and health insurance at least for a few months) It is the one day of the year my performances and presentations are unabashedly about living with HIV.
I work closely with the people hiring me to help them get an audience. If not, it usually turns out to be a handful of souls who are infected, directly affected through friends or family members and/or a few very focused activists. To get widespread participation takes dedicated marketing, a promise of a good time or at least something meaningful for people to take time out of their day and come out to hear about a topic they feel they have already heard enough of.
It makes me sigh with this thought of what I need to do to make people care, as well as break the preconceived notions of what they think they know. Why do I still try? I don't celebrate anything else in my life -- holidays, birthdays, anniversaries. (Odd, I know, but I didn't grow up celebrating them and they come so fast I have never gotten a grip on them) But World AIDS Day always gets my attention, though "celebrate" is not the word I use. It is closer to "recognize" -- sort of like Yom Kippur but for my disease.
I give my diagnosis credit for pushing me to the edge and reshaping my view on fear. "Just do it, you are going to die anyway." That thought propelled me to write books, get on stages and do art exhibits -- as well as marry a 24-year-old, max out credit cards and get a subzero mortgage. Some things good, some not so much.
I have tried to use my HIV diagnosis in the most positive way possible and never as an excuse for not doing something. I am blessed, as I mentioned before, to have access to treatment; and appalled that right now people are dying for the lack of that handful of pills I take every night. Since I was never a big joiner-grassroots, NGO type gal (I am more of a free radical), I participate in the only way I know how, which usually entails making a spectacle of myself; being available for people to ask questions and in doing so, hopefully shift their behavior to lower their risk of becoming infected; and inspiring people to have a little less judgment of those who carry the weight that comes with living with a still unacceptable, not at all hot, sexy or fashionable illness.
No matter how much I wanted to be seen as a writer, performer, educator, artist, etc., my life has and always will be informed by HIV. It is not a banner I wave, just a reality I accept. As time goes by I have more peace with my diagnosis -- almost a weird affection, for the virus that truly changed my life.
River Huston is an award-winning poet, journalist, performer and activist living in Pennsylvania.
Read more of A River Runs Through It, River's blog, on TheBody.com.