Living With HIV, Surviving the Boston Marathon Attack and Running the NYC Marathon

From Tragedy to Triumph, Again and Again

Stephen with his Achilles International marathon running guides, Yael (left) and Leigh.
Stephen with his Achilles International marathon running guides, Yael (left) and Leigh.

Nov. 3, 2013: It was dark when I left for the buses and when morning broke to an overcast sky, the wind gusts from the north made it bitterly cold. So what was I doing standing here trying to stay warm at the foot of the Verrazano Narrows Bridge on Staten Island in the first wave of the last corral of the 2013 New York City Marathon? Four months earlier it was doubtful I would be here; I had torn the plantar fascia tendon in my left foot. One doctor and many friends counseled me not run the marathon and after my tendon healed I had little time to train. Was I making the best decision? There was no way to know if I could do it and not reinjure my foot.

As I stood amongst my fellow athletes from Achilles International -- a New York City-based organization of athletes with all disabilities -- and our running guides, I had to go ahead. The last time I had been advised by a doctor not to attempt running a marathon was over a decade ago. I had been recovering from near death and my immune system had been severely weakened. Then there was no medical knowledge done on what effect participating in an extreme endurance sport such as a marathon would have on a person with AIDS. My doctors believed that it would be too much stress for my immune system. I was thankful for their concern; but as a marathon runner before I acquired HIV, I trusted my instincts to attempt that momentous 1997 Boston Marathon. I knew it was important for my mental well-being.

In the '80s I had read studies on the mind/body connection by the neuroscientist Candace Pert, a proponent of holistic healing. Little did I know that I would become my own experiment, and through my own experience shed light on the importance of exercise, especially aerobic, stimulating endorphins. Exercise would also help me avoid the many unknown toxic side effects of the new AIDS medications. Now here I was again challenging life over a decade later as an AIDS survivor with a foot injury at the starting line of the 2013 New York City Marathon.

But what motivated me to decide to challenge myself to run this marathon? The destruction from "Superstorm Sandy" that devastated many people's lives had cancelled last year's New York City Marathon in which I and my caring guides, Leigh Waxman and Yael Mandel, were supposed to run. Leigh and Yael live on Long Island where the storm had damaged their neighborhood, leaving their homes without power for over a week. Just six months ago I was a half-mile before the finish line of last April's Boston Marathon after the bombs went off. I could not avoid being affected, my endorphins could not flow with happiness, and I got physically sick. After these overwhelming experiences I had a responsibility to my team guides and myself to again transcend limitations and be a part of the 2013 New York City Marathon.

The day before, at the Marathon Expo at the Jacob Javits Convention Center in Manhattan, I went to pick up my racing bib number with my partner, Rick. Added security was present, backpacks were checked and proof of identification was necessary to get in. My emotions began to stir inside me when I saw all the blue ribbons people were wearing in support of Boston. Giving me my bib, the volunteer also handed me a blue ribbon. Over three decades ago the AIDS red ribbon was the first ribbon that people wore in solidarity with a crisis.

As I thanked the volunteer for the blue ribbon, I uncontrollably burst into tears as I blurted out that I had been in the Boston Marathon last April. My partner, Rick, looked at me and said, "Stephen, be strong." As I continued to say to the volunteer, "But the Boston Red Sox just did the impossible. They went from the worst team in baseball last year to three days ago winning the World Series Championship. Their triumph unbelievably uplifted the whole city." My tears were now of joy.

The blasting sound at the start of the Marathon pierced the crisp air. The City's signature song, Frank Sinatra's, New York, New York, loudly began blaring out. Leigh, Yael, myself, and others around us started singing along, "...I want to be a part of it New York, New York ..." And then we were off. The first hurdle, the long slow climb up over the Verrazano Narrows Bridge began.

From start to finish, this marathon had many memorable moments that got me through. Because of my foot injury, I planned on running slow the first half of the race and see if I could run faster for the second half. The man whose shirt said "I turn 81 in two weeks" inspired me. It was uplifting to see the incredible diversity as we ran through the neighborhoods of Brooklyn. The Hasidic men and Muslim women in their respective religious garb, the Italians, the Latinos, and so many other ethnic peoples that make up New York City -- a reflection of our multicultural nation. My foot was bothering me but I did not say anything to my guides. Surprisingly, by the halfway point it felt fine. I had already consumed a bunch of energy supplements and now because of how my foot felt, I felt secure enough to consume more. The Queensboro Bridge (also known as the 59th Street Bridge) was just ahead.

There were many live bands playing music at different points throughout the course. Just before we went over the Queensboro Bridge another uplifting moment happened, a D.J. was spinning Neil Diamond's Sweet Caroline. Seeing the stream of runners around me preparing to loop around and begin the ascent onto the bridge pumping their fists in the air shouting after the Sweet Caroline stanza: "boom, boom, boom." And after "Good times never seemed so good," all the runners sang out: "so good, so good, so good." I had rarely felt so motivated and so energized. But the 16th mile I was struggling and knew I could not run faster and yet, almost like an omen, the sun began to shine through.

Past the 20th mile Leigh shared with me her protein bar and energy Jelly Bellies, giving me a blast of energy as we strode the last five miles to the finish line in Central Park where Leigh and Yael's families waited for them and Rick for me.

We can wear all the ribbons we want but as a society we can do a lot to alleviate suffering from natural disasters and stop creating human disasters. I know during the Reagan administration the government did not respond to the AIDS crisis because it was politically beneficial to pander to the religious right. As a human species it is reprehensible not to respond to human suffering. We are the creators of most of the human tragedies that are created: ignorance, famine, poverty, war, racism, greed, environmental degradation of the planet, and other manmade disasters. Until we learn to care for one another and share our love we will be stuck in this repetitive "time loop."

Until we learn our lessons, I will wear my ribbons and keep running until it is my turn to join my ancestors.

From Stephen Kovacev: "My lover, Kevin McLean, passed away on World AIDS Day in 1990, and I was diagnosed with AIDS in 1992. I was on my deathbed in 1995. I eventually recovered not only because of the new medications but through my use of nutraceuticals and spirituality. My buddies at the cutting-edge buyers' club Direct Access Alternative Information Resources (DAAIR) helped save a lot of us.

In 1997 I became the first person living with AIDS to finish a Boston Marathon; and despite more near-death experiences, I have run many more marathons. I am currently writing a book entitled Soul of the Phoenix, which I expect to be published in 2014."