AIDS Day 2011: Sharing Our HIV Stories

This morning I was sitting in the restaurant of the Four Points Sheraton in Savannah Georgia. Yesterday I was in transit for almost 20 hours due to delays and missed connections but I made it. As I was eating my plate of hotel scrambled eggs, my neighbor to my right asked the usual, single person in the restaurant question, "Here for work?" I said, "Yes." He let me know he was also here for a job and I asked the obligatory, "What do you do?" He said, "I'm a motivational speaker."

I never would call myself a motivational speaker. I think of myself as a free radical wandering the planet telling stories and giving a different perspective on life or as a performer doing something I call edutainment; but I guess I'm really a motivational speaker, ugh. I told him I did something similar. He said his topic was 'loving your neighbor' and asked me mine. Huge pause. What is my topic? There is no way I am going to say HIV. I never think of AIDS as my topic. On my website www.riverhuston.com, you have to look deeply to even realize I am HIV-positive. It is offered as a subject but rarely does anyone hire me to speak about HIV except on World AIDS Day.

Sometimes I mention living with HIV at the end of my presentations and watch the shock and surprise ripple through the audience. There are several scenes dealing with AIDS in my one woman show, "Sex, Cellulite and Large Farm Equipment: One Girls Guide to Living and Dying" but in general I talk about sex, sexual assault, love, relationships, making better choices, body image, alcohol, addiction, mid life experiences; there are more things but you get the gist.

I don't speak exclusively about living with HIV anymore because even after 22 years, it hurts too much. I don't have enough resilience to constantly been seen as brave and courageous. I have been judged, edited, sanitized and asked to do things that I found repulsive. One such instance was when I was speaking to a group of high school students and the teacher whispered in my ear as I was about to go on, "Scare the shit out of them."

That was in the beginning, when I only spoke about living with HIV. It took me awhile to understand why I would come back to my hotel room and sob after my presentations. I know I helped people but it was at my expense. People would come up after a show and say things like, "I thought my life was bad but then I heard yours." Yay, I am glad I was helpful but now I need to put my hand in a blender to obliterate the pain, shame and sadness I feel from putting my most vulnerable experiences out there in front of thousands of people.

At one point, I realized if I was going to speak for a living I needed to look at the purpose of my presentations. Is it to be a train wreck for people to feel better about themselves because their problems are minuscule compared to mine? Or do I want to make people laugh, get people to think and help them find solutions to the challenges in their life? Number 2 worked out much better for me.

So when this guy asked what I spoke on I finally said, "Just life." He looked a little confused but I smiled. He asked for my card, I told him I left it in the past and he laughed.

I am booked for the week of World AIDS Day. I will share how it feels to have walked through a battlefield where all your friends, lovers and colleagues are dying around you, and you are left standing. I will let them know how it feels to be judged through that simple question that has ever been asked, "How did you get it?"

If they are medical professionals, I let them know how it feels to be a professional patient and what I need from the health care industry. I will balance this with what it is like to be given a second chance and live an amazing life, how to accept the ghosts of the past, and embrace the sadness when it shows up.

I will give them everything I have from the deepest core of my being in hopes that they find empathy, compassion and have a better understanding of what it is like to live with AIDS. I can do this once a year. It is my precious gift to let them inside the depths of my heart, to let them cry and share my sorrow, to let them feel grateful for their lives and lucky they are not me, to let them have pity and a touch of horror for the things I have been through, and to connect with someone else's pain to heal their own.

I share this poem to help those who are newly-diagnosed:

The List of Things I Could Have Used When I found Out I Was HIV-Positive

I'm going to need a storage space,
no, make that a warehouse
somewhere large enough to hold
the shock and later the anger,
wait, make that rage.

I will smile and cope the best
I can as everyone asks,
"Does this test mean you are just HIV-
positive or do you have AIDS?"
I will need a place to put my emotions as I calm you--
you being mother father, daughter, son, friends, lovers.

I will need thick skin as the doctors, each
and everyone, will ask me,
"How did you get it?"
and even thicker skin if I am thinking about
dating or disclosing

I will need an interpreter to help me understand
the language of treatment, activism, disability
HART, NNRT, AZT, CDC, PI, NGO, SSI CD4
then I will need a hefty supply of No
No, I will not be a guinea pig,
No, you cannot talk to me that way,
No, you cannot have one more resident look between my legs,
No, I need to see a doctor not a nurse,
No, I can't volunteer, you have to pay me,
No, I have not found your savior
No, I am not the face of AIDS
No, I am not okay

I could have used people who would
never tell me it is going to be okay
okay was over new game

I needed to know what it is like
to gather all the reserves
each of us is born with
venture, into that place reserved
for all those people
in the moment before
they got hit by the bus

I needed to understand
I was chosen
I can decide
victim/ survivor
I needed lots of water, green grass, love, cookies and milk, naps, small animals, time to myself, sex, friendship, a full life, hope, faith, forgiveness
I needed to know
I get a chance to let go of the mundane
and will be given a glimpse
of life's staggering possibilities
in three little letters: HIV