Angels In America (1993), written by American playwright Tony Kushner, garnished a plethora of awards including a Pulitzer Prize. With a multi-faceted impact on my life, including the fact I was raised Mormon, I eagerly adopted Prior Walter’s “favorite place in New York City” as Bethesda Fountain in Central Park.
Manhattan was my first gay playground outside of Utah and Brigham Young University. Several of my college friends moved there and I traveled often during my first decade after coming out. Within months, I came face-to-face with my biggest fear, perceived enemy, and undetectable teacher—the human immunodeficiency virus (HIV).
Every time I’m in Manhattan I visit Bethesda fountain. The trek into the park has become a labyrinth-like journey into my center. A pilgrimage to pause in gratitude for a grace that has touched my life. And renew my dedication to teach and inspire “more life” in the minds and hearts of others.
It’s taken years to arrive at a point where I finally feel like I am thriving. Spreading my truth via an online platform that utilizes my best talent. Practicing and posing in an attitude of warrior-like-training that supports a life I have designed. And making space for new relationships, ideas, work ventures, and a reunion with one of the great loves of my life—classical piano.
In wisdom and a mindfulness perspective, I have made room within myself for the orphan-like emotion called shame. Nurturing and tucking-in its presence as part of the orchestration in the opening of my heart. I spent far too many years in my Mormon closet praying like Joe, from Angels In America, for “God to crush me and break me up into little pieces and start all over again.” It certainly didn’t help when I contracted HIV or developed AIDS several years later.
I didn’t know then, that it wasn’t me that needed to be crushed and broken into little pieces. I was perfect, as a gay man, and perfectly unlucky in some ways for finding HIV. Cancer and Aortic Aneurysms are pretty unlucky too.
In 2014 gay marriage is legal in more places than ever before. One man alone, Timothy Ray Brown, cured from HIV stands as a muse to inspire science and faith. Research supports that HIV-positive individuals on anti-retroviral treatment with undetectable levels of HIV in their bloodstream do not pass HIV to their partners.
And all the while, significant research rolls in last week from the CDC stating that 70 percent of the United State’s population of HIV-positive people are not staying on treatment and are not maintaining undetectable viral loads. With our privilege in the U.S. imagine what those numbers look like on a global level?
Why is this happening?
A question that needs to be replaced with an immediate and whole hearted answer.
How we can we create a more compassionate culture for those with HIV and offer life saving medicine that keeps their body from developing AIDS, and inspire more deliberate living on an emotional and spiritual level?
This year my ex-boyfriend of five years, my first true love and Romeo, died alone in his apartment. Due to a combination of drugs and medications for HIV, Hepatitis C, and Bipolar disorder. Several other close friends lost people to AIDS. A couple weeks ago Brad Crelia, HIV-positive journalist and activist died from porphyria. This is a disorder connected to the production of porphyrins and heme which results in neurological problems or skin problems. I don’t know if Brad’s porphyria was inherited or acquired, since certain HIV medications can trigger acute porphyria by interacting with enzymes in the liver which are made with heme.
What I do know is that I am on one of the medications that can trigger porphyria. And I easily internalize this information during a week when I cannot get a refill on my HIV meds because my new insurance under CalOptima is only approving one of my four medications. And mind you, the one they are approving is the one medication that can trigger porphyria.
Please don’t tell me to not worry. Challenge me to practice yoga, write more music, put myself out there on a dating website, meditate, or write a piece for Viral Mindfulness. Invite me to sit with my fear and marinate with the words of Pema Chödrön: "Fear is a natural reaction of moving closer to the truth.” To be fearless we have to become friends with fear.
The whole experience of living on meds with HIV is primed with worry and fear. Last time I checked, most sexually active HIV-negative adults were swimming in fear from "catching HIV." The entire medical model supports a reality that eventually my smart-little-virus will mutate and become resistant to the current cocktail I am dependent on. And then I will move to my next options, which eventually leads me to fewer choices for medicine, with more adverse side effects. When the meds no longer work I develop AIDS and approach my inevitable death (and yes, I could be hit by a bus, and it’s probable I won’t die from AIDS). However, HIV/AIDS was the number six leading cause of death in the world in 2013.
Why is it that one of my clients, a woman married to her wife, a prominent activist in the LGBT community has never shared her HIV status with her family? She fears that if her children know, with inherited stigma and fear, they will prohibit access and intimate time and sleepovers with the grandchildren. I tend to agree with her.
And everyone seems to agree that stigma is the biggest problem we face.
Today marks my twelfth World AIDS Day in this capacity. It's the one-day-of-the-year I feel less alone and undetectable. And I am asking you to crush your heart open into little pieces of compassion for HIV/AIDS.
It’s time we stop defining the barriers and start providing action steps to enhance more life and treatment for those living with the virus. For those of you who are “negative” this is your invitation to become an ally for us. And for all of us, the medicine we're all in need of is more compassion.
Consider a-half-a-dozen things I didn’t know HIV/AIDS could teach me.
1. Your one heart was intended to break open (to more life) and not close.
It was my heart, not me, that was supposed to “break up into little pieces and start over again.” Every day like the rising sun. After each heart break, relapse, mishap, crisis, struggle, diagnosis, death, and goodbye. It’s one of the ironies in life. We only experience deeper love and connection as we continually ride the wave of letting go, and then find courage to let more in on the next round.
2. Internalized stigma is an important place to focus your attention.
Internalized stigma of HIV/AIDS is like internalized homophobia. It refers to your internalization of society’s attitudes about HIV/AIDS. And it correlates with psychological and medical outcomes, including depression, anxiety, shame, substance abuse, and dangerous sexual behaviors.
"Just keep coming home to yourself. You are the one you have been waiting for (Byron Kate).” The propensity is strong to need others to stop stigmatizing you. At the end of the day, just like every other issue, the most difficult awareness and work is within. To uncover and reduce undetectable pieces within you that stigmatize and judge your self. This is a courageous path to embark on and one that you have complete control over. When you make space to meet yourself with compassion it matters less what others think.
3. Meditation, mindfulness, and yoga is a practice to consider adopting.
It’s official, and science, as well as the successful report the benefits. We all know it helps and terrifies us in the same breath. These practices are the ones that encourage stillness, silence, being present with whatever arises, and meeting the moment and your thoughts without attachment or judgement.
Learn more about mindfulness and meditation by subscribing to Viral Mindfulness Mondays, and learn how yoga helped me choose life with HIV instead of death by AIDS.
4. Find the one song and message you long to share with the world.
No more life in limbo. It’s time to be deliberate and find the courage to share your unique song with your tribe, family, and community. And most important, with yourself. Returning to my music and classical piano has filled many empty parts of my life.
5. Become friends with the emotions easy to avoid: discomfort, pain, insecurity, sadness, fear, worry, anger, shame, rage, i.e.
We all have pain—fear, worry, heartache, financial distress or disease. And we have the same opportunity to make a choice to practice and pose living, while working with the pain and discomfort. A strong determination to do this does not come once. It is flexed daily and regularly when we choose to see ourselves as spiritual beings, warriors, and heroes participating in this human experience. Strong determination does not imply perfection or even knowing how. It is a life force, energy and breath. A joyful, relaxed and trusting attitude to rise each morning knowing you really have no idea what might happen. In fact, it could be the day you die.
6. What is your one reason and your big “why” that gets you out of bed each day to slay dragons?
“Don’t ask yourself what the world needs; ask yourself what makes you come alive. And go do that. Because what the world needs is more people who have come alive (Howard Thurman).”
I chorus the final words of Angels In America:
"You are fabulous creatures.
And I bless you: More Life.
The Great Work Begins."
I invite you to open your heart, take a deep breath, and allow a piece of your compassion and hope to travel outward, towards the millions of people who are directly dealing with HIV/AIDS today. And for the next 364 days until World AIDS Day next year. Namaste.
*Alexander Smith is a Mindfulness Coach, Storyteller and Licensed Clinical Social Worker. He was diagnosed with HIV on March 17, 2003 and technically developed AIDS in December 2008. This year his viral load is undetectable and his immune system is stronger than ever, 827 shiny happy T-cells. Learn more about his work at www.viralmindfulness.com and www.blessyourvirus.com. In January 2015 he will launch a new website that aims to teach the millions of people living on this planet with HIV/AIDS how to cultivate "more life."