We’re all familiar with “the butterfly effect,” the idea that even an action as small as the flutter of a butterfly’s wings can set off ripples that travel far and wide, altering the course of history.
When Martina Clark spread her wings as an HIV/AIDS activist, she set off ripples that changed the course of HIV/AIDS history. From a shy self-doubting young woman newly diagnosed with HIV, to the strong, confident, assertive advocate who reordered the United Nations’ response to the HIV/AIDS pandemic, Ms. Clark has impacted the lives of millions of people living with HIV worldwide.
A Bay Area native, Ms. Clark earned a BA in International Relations from San Francisco State University in 1989 and an MFA in Creative Writing and Literature from Stony Brook Southampton in 2016. Open about her HIV-positive status when hired by the United Nations, she worked for two decades in UNAIDS, UNICEF, the Department of Peace Operations, and other UN agencies. She lives in Brooklyn, New York, and teaches writing, critical reading, and global politics at LaGuardia Community College/CUNY. She has lived more than half her life with HIV.
And now, Ms. Clark has blessed us with her memoir, My Unexpected Life: An International Memoir of Two Pandemics, HIV and COVID-19 (Northampton House Press), a compelling mixture of personal memoir, travel reporting, humor, activism, and as she put it, “an up-close look at the squishy underbelly of the United Nations.” It traces her extraordinary life from her diagnosis with HIV in 1992 (aged twenty-eight) to starting treatment, surviving an abusive marriage, fostering a teenage daughter, conducting condom demonstrations with a wooden penis and a silicone vagina in more than fifty countries, quitting the UN after two decades, and contracting and surviving COVID-19 in 2020. The memoir is eminently readable, emotionally powerful, and soul-bearing, the remarkable story of a woman living life “with an incurable illness—okay, two incurable illnesses—a well-stamped passport, and a stubborn determination that keeps me alive to bear witness to the human condition.”
A&U corresponded with Ms. Clark on the eve of publication of My Unexpected Life.
Hank Trout: The day you received your HIV diagnosis, you had a flashback to fishing in the South Pacific and catching a worm-infested blue marlin. You write, “The haunting image of that infested fish and those hungry worms flooded my brain. It had been so beautiful yet was being eaten alive from within. That was how I felt.” Can you elaborate a bit on your initial response to the diagnosis?
Martina Clark: I felt numb and couldn’t make sense of things. I remember thinking that my life had been wiped clean. Everything prior to that moment seemed to have been yanked away. I cycled through every imaginable emotion. I was angry that this had happened to me at such a young age. I was ashamed. I’d already felt I was the family fuck-up; this was just further confirmation of my inability to do things the ‘right way.’ I was confused because, as far as I knew, I’d never seen another woman with HIV.
All of this, and more, raced around in my brain trying to make some vague sense out of my new reality. Mostly, though, I felt heartbroken and terribly, terribly sorry for myself. But ever the pragmatist, I couldn’t afford to wallow, so I kept going. I [told] my sister, whom I was living with at the time, and her husband. Then I told some close friends, then some more and, finally, when I’d had a fair amount of practice, I told my parents and other siblings about three months after my diagnosis. It was a relief to get it off my chest because I’m a really shitty liar.
Now, nearly thirty years later, I still find it hard to tell people on my own. I don’t mind that they know, at all, but maybe I’m still reliving that moment of shame. Guilt, stigma, shame, they are evil foes.
Your applications to the Peace Corps and a language school in Prague had been accepted. But HIV immigration restrictions prevented you from taking either position. How did that affect your life’s plans? Did the rejections give you some idea of how being HIV-positive would affect you both personally and professionally?
Every single damn thing shifted. Everything. With those disappointments, I began to understand that the consequences of having HIV were far greater than physical symptoms. At the beginning, I feared I’d never be able to travel internationally again. I let my passport expire which, for me, was paramount to giving up. I felt as if the universe was punishing me for being a fuck-up. My love of travel was, at least in part, rooted in never really feeling like I belonged. When one travels, one is not expected to belong, so it actually felt safer.
Professionally, I was definitely disappointed to lose those opportunities, but I never had a specific career in mind, so I worried less about that. Work really was mostly about earning money. If I enjoyed it, so much the better.
In a section called “Comfortable with Death,” you write, “By the time I was old enough to drink legally, I’d lost at least a dozen friends and family members.” How did that affect your response to the deaths of friends and colleagues from AIDS?
Experiencing those deaths in my early life was like attending boot camp for the AIDS crisis. I compartmentalized so many deaths because loss was a feeling I’d long grown accustomed to. I rarely grieved, as a child and even now. Today, I think it is because I know that if I grieve one death, I risk grieving them all and the pain would swallow me whole. I’d never be able to function again.
You write that, after your diagnosis, “Like—I assume—most patients diagnosed with a life-threatening illness, I kept wondering, Why me?” Instead of wallowing in self-pity, you started learning more about HIV/AIDS. What reserves did you draw upon to escape the self-pity and seize control of your life with HIV?
I am pragmatic. I didn’t have the luxury of checking out or taking “me time” to process my status. So I kept working. I think this actually saved me and allowed me to learn about the virus and what I could do to change the course for women in the future so that at least my own life would not be in vain. In 1992, we didn’t yet have viable treatment, so I felt I had nothing to lose. I was sure I’d be dead within a matter of years, at best, so it made perfect sense to fight as hard as I could.
I found my life more meaningful than ever before. Being diagnosed in the San Francisco Bay Area was a blessing. Having HIV was not an anomaly there. Had I been diagnosed in a rural town in the Midwest, I’m not sure I would have got out of this thing alive. This would be a very boring interview, probably about cows. I’m a person who makes the most of the situation they’re in. I have yet to master manifesting the situation I want to be in. But I’m not giving up.
Can you explain your motivation for becoming active in the HIV community so soon after your diagnosis?
My motivation was two-fold. First, I was initially invited and embraced by two extraordinary women. Penny Chernow, my first social worker immediately after diagnosis, and Rebecca Denison of WORLD [Women Organized to Respond to Life-Threatening Diseases]. Second, I was motivated to find other women and men who could relate to having HIV. I had an amazing support team in my siblings and friends, but none of them really knew what I was dealing with—how could they?—so integrating into the HIV community felt like coming home. Albeit a home I’d never really wanted to live in, but it turned out to be very warm and cozy and built with so much love.
The majority of your memoir details the exhausting, detailed, rewarding and sometimes frustrating time working with various groups within the UN. Just briefly, can you describe how your extensive travel informed your activism? Did traveling and working abroad make you a better activist?
Context. Yes. My extraordinary privilege of traveling for the UN to work with our personnel all around the globe helped me to understand a fuller reality of what it means to live with HIV. In each place I collected a new piece of the puzzle so that I could better represent the needs of more people living with HIV or AIDS. I’ll never understand everyone’s realities, by any means, but now when I advocate for our community, it’s not just about me, I sincerely hope this has made me a better, more inclusive and responsible activist.
You kicked down a lot of doors during your twenty years at the UN! As the first openly HIV-positive person hired to work for UNAIDS, and in subsequent positions, you helped to change many of the UN’s policies around HIV/AIDS. What are some of the barriers you encountered in your UN work? Where do you feel you had the most success?
It was hardest to be heard at UNAIDS. In retrospect, we were all in the process of defining our roles and what UNAIDS even was when it started in 1996. I now think that my messages were heard and internalized. But nobody really knew how to respond.
The other barrier was funding. When I worked at UNICEF, I never had a working budget that was big enough to tackle the job at hand. So I was forever going around with my tin cup begging for donations. At the end of the fiscal year, if other teams had left over money they couldn’t spend, I’d be there at the ready with my list of dream projects depending on the price. UN organizations get their money from governments and, in the case of UNICEF, from private and corporate donations. None of those entities wanted to give us money to take care of our own personnel. The struggle was convincing the senior management that we needed more investment in our own human resources support for staff well-being, including HIV.
The most success I had was in the small workshops and hallway conversations with staff. Talking to parents about how they could educate their own children about HIV, for example, was an immediate win. And then the side conversations when a colleague would ask questions they were embarrassed to raise in a group were moments I felt gratitude that they were able to approach me. I didn’t always like their questions, but I valued the chance to help them think things through.
The other major success was UN Cares, the UN system-wide workplace program on HIV. Through that the UN signed on to a mandatory HIV training—in real time—for all personnel, worldwide. Even today, sessions continue, and virtual learning options are in place. The day it was launched, I felt incredibly proud. From that day forward, internal staff well-being and LGBTQ+ issues inched up a notch on the senior management’s agendas.
There are moments of great humor in your memoir. For instance… can you introduce us to “Woody” and “Sil”?
Ah, Woody and Sil, my faithful traveling companions for so many years. Woody and Sil have now gone into retirement and are living a comfortable life on a shelf in my bedroom closet. I first met Sil in New York. She arrived in a small box at my office at UNICEF in mid-town. Squishy and the color of a cat’s tongue, she was sent to me by a friend and colleague. Sil is short for Silicone. She’s a silicone vagina model. She went on every single work trip I had for the UN. Woody we met later.
Woody was a gift from a UNICEF colleague during a trip to Nairobi, Kenya. Woody is a good looking blond. Blond wood, that is. He’s a wooden penis model. That evening, I wrapped Woody and Sil in a T-shirt and nestled them in my suitcase in the hotel and, well, let’s just say they’ve been a couple ever since, taking the world of condom demonstration—male and female—by storm.
Throughout the memoir, you lace your narrative with pertinent information and your experience with COVID-19—you contracted COVID in 2020 and are now one of the “long-haulers.” Do you remember your reaction when you first heard about COVID? In addition to the physical torment you suffered, how has COVID impacted your day-to-day life and your activism?
Ouf. Like so many of us, when I first heard about COVID-19, I did not grasp what was about to unfold. In January 2020, I began reading articles, then watching a few news clips. I bought a box of surgical masks and tried to get everyone I knew to take a few. Some laughed. Some indulged me. By February, the story was everywhere. My masks were now not so silly. When my world shut down on March 12, 2020, a colleague asked me if I thought this would last very long. I remember shaking my head and saying, yeah. I think we’re going to be at home for the rest of this semester. I so wish I’d been wrong.
As the sounds of sirens and helicopters replaced the sounds of cars and pedestrians and loud-ass New Yorkers, I immediately thought back to the mid-1980s when I lived on Castro Street in San Francisco. I began to remember some of my earliest memories of the AIDS crisis, as if it were happening all over again, but on a much larger scale. When I contracted COVID-19, I convinced myself I had a mild case because I never had to go to the hospital. But a year and change out, I’m still dealing with it. I can’t say COVID is worse than HIV, because that would be a lie. But the lingering pain on my left side and the still-undiagnosed hypersensitivity on my left temple are an actual pain in my side. The U.S. handled COVID so very badly and it is a disgrace.
And I think that’s all I’ll say on that before I fall down an orange-tinged rabbit hole.
Hank Trout is a Senior Editor of A&U. He interviewed writer Brian Malloy for the August issue.