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The C Word (Cure)

The C Word (Cure)

“I have endeavoured in this Ghostly little book, to raise the Ghost of an Idea . . . May it haunt their houses pleasantly, and no one wish to lay it.”

Charles Dickens, December 1843

Winter, 2009. Tucked in a basement corner office, void of windows, at least six-feet-under, lit with an eery iridescent glow, I stop dead in my cyber tracks like a door-nail, and stare, stone cold at the computer screen.

Eyes riveted on one word as my mind wrestles with its intimations.

I frantically follow a cyber trail and learn of a man called the Berlin Patient.

My response is similar to sensations I experience only in Bikram yoga. Bending backwards into the unknown, through camel pose in 105 degrees, chest and heart wide open, a tingling and numbing sensation in arms and fingers, tears and sweat cascading from eyes and pores, and a monkey mind screaming: "Turn off the damn heat!” In such masochistic chaos, once or twice, I have found a moment of nirvana and on this day, it arrives when I reverently lean back in my office chair and with steady breath inhale the word.

“Cured? One Berlin Patient no longer has HIV?”

I have fantasized of a cure daily since my diagnosis. An idea not very important to many since antiretrovirals (ARV’s) changed the face of HIV/AIDS in the mid nineties, and the simple fact our world runs rampant with terrifying diseases in need of a cure. We thought we had found one, instead it was the beginning of a status known as “living with HIV”. A status reserved for Americans, the privileged, and educated. Those with power, health care, or money, and initially, a majority belonging to the male gender. A quiet invisible status that grows roots in fertile soil of shame, stigma, and secrets.

Preparing for the obligatory visit to my HIV specialist I find myself angry. “Why has she not mentioned this?” We had an agreement. She would manage a thick fog of chemistry, biology, medicine, and numbers. And I would wade through raw microscopic weight of mortality with my virus. After thousands of ghostly stories of T cells, viral loads, and side effects, the cure haunts me with hope. A rare medicine I have been searching for.

Thirty million people have died from AIDS related death since the beginning of the epidemic. Millions more of their family and friends carry tales of a past I do not comprehend. Thirty four million people world wide currently have HIV/AIDS and roughly twenty percent of those are on a life saving cocktail. The unmedicated millions seem to sit in the spirt and pandemic proportions of the past. They will die from AIDS unless they are offered hope.

Meanwhile my cocktail and I are bitching bah humbug to my doctor. Her response is intellectual and cold. It cuts to the marrow of my bone. Something about the cost of a transplant, a high death rate, feasibility of replication, and her own lack of interest. "HIV is a retrovirus and they often assist in the collective strength and expansion of our species." She must have noticed the horror on my face as she squashed one of the happiest thoughts of my HIV life. “Please don’t take offense,” she exhales, “I admit I am not the one with the virus and taking daily medications.” I left her office feeling “solitary like an oyster” (Dickens).

I understand logistics, challenges, cost, and the current policies and practices. I realize the cure might not be available for years, if ever. I just don't understand why talking about the cure feels like I am using a four letter word. The impossible is now a possibility and I want to shout this information from the rooftops!

In the Spring of 2011 I frolic for answers at the foot of the eiffel tower with gay friends. It is a lovely Sunday afternoon rich in all things Parisian. We relish in full picnic mode and powerful conversation. As we share our stories the four of us connect at a level of love and humanity where no status separates us. It was one of the great moments of my life. One of these friends is a producer for CNN. My little baby, Bless Your Virus, was conceived that day in Paris. Simultaneously, now on home soil, the Berlin Patient is living in San Francisco. And he too is giving birth to a new idea. Coming out from behind a wall of anonymity to reveal his identity and story as an offering of hope to others. Timothy Brown leaves a loneliness to stand alone as the one cured from HIV. 

While prepping for my national coming out in full frontal as a positive man via CNN, I curiously find my center during an early morning walk when I stumble upon a small community garden. I observe the plants and marvel at their connection to the soil and sun. I imagine the water that nourishes them as it pours from the hands of a community of gardeners. Tiny buds and flowers are willing to be visible and work through their vulnerability towards fruit. I had deliberately decided to hold on to the idea of a cure. Did I contribute to a collective consciousness that supported the Berlin Patient?

Gero Hütter, his doctor, had an idea before the proposed bone marrow transplant to treat his leukemia. "Let's think outside the box," he said. Which led to find a bone marrow donor that was CCR5-negative and his lab even paid the cost. People with a certain genetic mutation, called CCR5-delta-32, are essentially immune to HIV because their cells lack an entry point for the virus. After testing 232 donors worldwide, donor 61 was a match. Would these stem cells essentially grow the Berlin Patient a new immune system, uninfected with HIV? Naysayers were skeptic. Even criticizing Dr. Hütter’s youth and status as a normal physician without a leading position. What a brilliant and revolutionary idea and man. And fuck, he was right! A colossal wall of impossibility was demolished with our protagonist cured. 

Why does it look like a ghost of an idea to cure HIV/AIDS? A powerful truth in Buddhism challenges us to sit with our discomfort and pain. A certain phrase, feeding the ghosts, invites us to relate by creating a relationship with the discomfort and pain. A cure forces us to relate to the past and courageously sit with the death, loss, injustice, and horror of the first 15 years. The cure asks us to see beyond a present mirage into an invisible epidemic. Today a majority are dying without access to life saving medicine. Those living with the virus carry high viral loads of shame, stigma, and side effects. Women, children, people of color, and the poor are once again a prime target. Greed and money might keep the big business of AIDS and life long treatment in power; even prohibit support and funding to further research the cure.

The spirit of the future requires we love bigger and different now. We must remove the condoms we wear on our hearts and spread compassion, kindness, and equality. We are living in the new economy of ideas and connection. It would be wise to see our interconnectedness and move beyond borders of race, gender, sexuality, religion, class, education, and disease.

Perhaps we can learn from a reformed Scrooge, “I will live in the Past, the Present, and the Future.” The cure has arrived, are you ready to receive it? 

May the spirit of the Berlin Patient haunt your hearts, hopes, and conversations pleasantly!