The Ride for AIDS Chicago addresses stigma while helping HIV-positive youth
Positively Aware Rob Garofalo, MD
By Rob Garofalo, MD @DrRobGarofalo PHOTOGRAPHS BY CHRIS BAUER

My name is Robert Garofalo, captain of Team Fred for the 2015 Ride for AIDS Chicago. I am a pediatrician and Division Head of Adolescent Medicine at Ann & Robert H. Lurie Children’s Hospital of Chicago. At Lurie Children’s I am also the Director of the Adolescent HIV Program.

In addition to my work at Lurie Children’s Hospital I am also the founder of a grassroots charity established in 2012 called Fred Says (fredsays.org). Fred Says supports organizations that serve and support HIV-positive youth nationwide. Who is Fred? you may ask. Fred is an adorable Yorkie puppy that saved my life when I adopted him following my own HIV-positive diagnosis. For 2014 and 2015, Team Fred has been a community partner in the Ride for AIDS Chicago—meaning that the proceeds our team raises are shared equally to support the missions of both Fred Says and Test Positive Aware Network (TPAN), the publisher of POSITIVELY AWARE. It is an honor and privilege to be a community partner of the Ride. It is also a tremendous opportunity for our new non-profit, and I will forever be grateful to TPAN for continuing to work with us.

My commitment to the Ride predates my work with Fred Says. On those cold early Saturday mornings in early April, lying in a warm bed cozy with my dog Fred snuggled up beside me, I do often seriously wonder, “Why do I ride?” I mean, a two-day, 200-mile bike ride in the heat (or rain or wind) of the Chicago summer seems less appealing when brunch, a BBQ, or a casual walk by the lakefront represent far less strenuous options.

However, once I drag myself out of bed, deftly avoid Fred’s stink eye and obvious displeasure at my early arousal, and power through a shower while getting ready for an outdoor training ride, it all comes back to me.

Now in my fourth year, I do the Ride for AIDS Chicago for many reasons, but there are three that I think are the most important. First I ride because the Ride will forever be an integral part of the healing related to stigma that followed my own HIV diagnosis. Healing that, in part because of the Ride, has now turned into thriving.

Second, I ride because the people associated with the Ride have become my family and friends. They have shown me and others like me unwavering support, and demonstrate through action what it means to change the world.

And third, I ride because whether it means supporting the work TPAN does for our community or supporting the charitable work that Fred Says does for organizations serving HIV-positive youth, I am unwaveringly committed to making the world a better place for those affected by HIV/AIDS.

My own journey with the Ride began in 2012 (coincidentally the same year Fred Says became an official non-profit organization). I had had my share of challenges in the years leading up to my first Ride. I dealt with a cancer diagnosis in 2007; I spent the majority of 2008 and 2009 dealing with the loss of a man I loved deeply and the end of our 10-year relationship, one that I cherish to this day. And in 2010 I was utterly devastated by my own HIV diagnosis. I felt damaged, ashamed, and alone. Although I had always been in my mind a silly and fun-loving guy, each day was now a struggle. Self-pity had become my reality, and it was not pretty. I knew I needed to take back control of my life, I just didn’t know how.

As a pediatrician at Lurie Children’s Hospital I had devoted my career to helping adolescents and young people cope with and manage HIV. There was irony in the fact that I was unable to afford myself the same compassion I had spent my career giving to others. But in 2011, I took my first healing step. I drove to Gurnee, Illinois on a frigid winter day and adopted a 10-week old Yorkie puppy I aptly named Fred.

It was an impulsive decision, and one that was not entirely rational. I had never had nor cared for a pet and at the time struggled to make sound decisions caring for myself. What made me think a dog would be the answer?

But Fred brought me back to life. With boundless positive energy and unconditional love, he was the antidote to my self-imposed isolation and he had no time or patience for my self-pity. In short order he taught me how to smile and laugh when I thought neither might be possible ever again. However, my healing was incomplete. Although Fred was without question my guardian angel, my life very quickly became about my dog. It was Fred and I (and me and Fred). I still struggled in efforts to make new friends and reconnect to the community around me.

So, one early afternoon in January 2012, sitting in my parked car on the side of the road with tears in my eyes following yet another intense session with my therapist, I got a Facebook notification on my cell phone, “Keith Stryker is at the Ride for AIDS Chicago Kick-Off Party.” Keith was someone I had met briefly a few weeks earlier. He is one of those people who draws attention because he just exudes positive energy—you can feel kindness and warmth when around him. I had made a mental note to myself the day we met that this was someone I wanted in my life.

Without giving it much thought—like thinking that I did not even own a bike—I drove over and signed up for my first AIDS Ride. Keith was the captain of my team, Team CÜR. My first Ride was all about Team CÜR, and while it is not the kind of thing you say at the time, I’m not sure the group of guys that were Team CÜR ever quite knew how important they were (and are) to me.

That first year was also about meeting people from diverse segments of our community; people too many to name, who were it not for the Ride I would have never had the pleasure of getting to know. Working together with a singular fundraising focus, Team CÜR and the other teams and individuals that formed the Ride became a family of sorts, and I was honored to be part of it.

However, there was a defining moment in the Ride that first year during the closing ceremonies, when a group of HIV-positive riders called the Poz Pedalers walked out with a riderless bicycle symbolizing all those who have lost their lives to HIV/AIDS. In that moment I felt like a fraud, unable or unwilling to step forward and be open and honest about my own status. I stood paralyzed with fear, afraid of being visible, especially as a physician, not wanting others to know about my struggles or about my HIV. I had talked freely and candidly over the years about overcoming cancer, but when it came to discussing my HIV, stigma ruled. I was always cleverly vague and used language such as “personal struggles” but could never utter the words “I am HIV-positive” in public. And in that moment during the closing ceremonies I stood silent, unable to just come out and say, “Hey! I am HIV positive, and I just killed it and rode 200 miles on my bike!” I was so disappointed in myself for giving HIV and stigma that much power and control. I vowed that the next year would be different, and it was.

I now participate in the Ride each year as an openly HIV-positive man. I take my place alongside other Poz Pedalers next to that riderless bike, unapologetic about my past, proud of who I am, and feeling (pardon the pun) positive about my future. My secret weapon against the stigma that used to paralyze me remains the unconditional love I receive from my dog Fred, who walks by my side at the closing ceremonies, unaware of the power of his being. Honesty about my HIV has also allowed me to be open to receiving love and support from my family and friends, many of whom are fellow riders. Too many HIV-positive people still live as I once did, in the shadows, afraid to ask for help or afraid of being open with family or friends for fear that they may be judged or alienated. For me the Ride remains part of my own healing, and I hope that being more open about my diagnosis may in some small way help others to find the courage to do so as well.

In 2014, my third year doing the Ride, I became a team captain and formed Team Fred. As a community partner, it was an amazing opportunity to help establish the giving of our grassroots charity Fred Says while simultaneously supporting the work of TPAN. It was an opportunity we did not take lightly. In our first year Team Fred—almost 40 members strong—raised just under $80,000, and had lots of fun doing it.

So, we are back for 2015! Each member of Team Fred may ride for different reasons, but we are committed to the Ride and to each other. For some, such as myself, the Ride may be part of their healing process. For some, the Ride may be about the camaraderie of teammates, friends, and family. But without question the one unifying reason for us all, is that the Ride is our way of helping those in our community affected by HIV/AIDS.

The 2015 Ride for AIDS Chicago takes place July 11–12; to register or for details go to rideforaids.org. For more information about TPAN or Fred Says go to tpan.com and fredsays.org.

DR. ROBERT GAROFALO, MD, MPH, is a Professor of Pediatrics and Preventative Medicine at Northwestern University’s Feinberg School of Medicine. He is a national authority on LGBT health issues, adolescent sexuality, and HIV clinical care and prevention, and has served as principal investigator on several HIV prevention grants through the National institutes of Health, targeting young men who have sex with men and transgender women. Dr. Garofalo is a former past-President of the Gay and Lesbian Medical Association. He received his MD from NYU School of Medicine and MPH from the Harvard School of Public Health.