Sometimes life will give you lemons. And sometimes you make lemonade. My lemonade came in the form of a Yorkie puppy. This is our story.
In 2006 I was diagnosed with cancer. From 2007 to 2009, a 10-year relationship with the man I loved and thought I would spend the rest of my life with struggled and ultimately came to an unfortunate end. And in 2010 I was mugged and assaulted while walking down the street. Later that year I was diagnosed with HIV. Lemons!
Being told by my doctor that I was HIV-positive was unlike anything I had ever experienced. With cancer or a breakup, one can rightfully assume that colleagues, friends and family will rally with support, love and care. And in my case, they did, totally. But with HIV, you have no idea what to count on.
Unlike any illness or disease on Earth, HIV is the only one where you cannot implicitly count on the love and support of your friends and the ones you love. Getting diagnosed with HIV, you often battle guilt and shame, but you also fear how others will respond to the news, and to you.
All too often, HIV-positive people feel marginalized and live in secrecy, afraid to tell those around them about their diagnosis for fear that they may be unsupported, judged, alienated or ostracized. Some call this "stigma." At the time, I didn't know what to call it. But I lived it, and I can tell you that it rocked my world. Of course, there was some irony in that.
I spend my career helping hundreds of HIV-positive adolescents manage and navigate HIV-related stigma. How easily the advice always seemed when giving it to others. But when the proverbial shoe was on the other foot, I struggled. I felt alone. I didn't eat. I had trouble sleeping. Honestly, I was a mess, at home, at work, with family, and with friends. I held my life together as best as I could, but make no mistake about it: My HIV diagnosis and the time that followed was the lowest point in my life.
Desperately searching for something to lift my spirits and get my life back on track, one night I did a Web search for "puppy Chicago," and up popped an image that has forever changed my life: a 10-week-old Yorkie puppy whom I named Fred.
Although I had never previously had a pet, the moment I saw him, I just knew I had to have him, and that we were meant to be a family. As a puppy, he needed me. However, he had no idea how much more I needed him. He had goodness to his soul that instantaneously took away my pain. He made me laugh when I had forgotten how to. He made me realize how great the future could be, or would be together. To me he was magic, and I wanted to share that magic with others. So I decided to form a charity that combined overcoming my personal struggles with the love I had for my puppy, my life's work and wanting to help others grappling with HIV, hence Fred Says. I can sum up the reaction of colleagues, friends and family when asked about my decision to start a charity with Fred: "You're kidding, right?"
But with it becoming increasingly challenging to secure public dollars in a strapped economy, the goal was to create an entirely new business model for HIV and HIV prevention. The goal was to bring in revenue from new and innovative sources that were self-sustaining and creative. My inspirations included Hello Kitty, the cartoon kitty who is an international superstar with her own line of merchandise, including lunch boxes and luggage, and Boo, the adorable Pomeranian with 7 million Facebook followers and a robust business model (including children's books) who is an occasional White House visitor.
Just think about the revenue power of Hello Kitty or Boo, except with a nonprofit, charitable mission. And with all due respect (and I realize I am not objective here), Fred is as cute, if not cuter, than both of them. Are you reading this, President Obama? Fred is patiently waiting for his invite.
In September 2011 I started Fred Says, a grassroots charity devoted to improving the lives of teenagers living with and affected by HIV. Fred Says creatively uses social media (e.g., see Fred's 30,000 Facebook fans) and images of Fred to leverage support in what is designed to one day be a self-sustaining charity helping youth impacted by HIV. We started with greeting cards of Fred and a "$1 Makes a Difference" monthly e-card campaign allowing people to make small donations that, when put together, can make a huge difference. In 2013, we've launched a new website and more products, including a leash, a mug, a Fred plush toy, and even an upcoming "Men of Fred" calendar, to be released later this year.
Reflecting upon National HIV Testing Day this past June 27, I thought back to the time of my own diagnosis and my journey as an HIV-positive person, son, friend, colleague, dog owner, and physician. I know that Fred was instrumental in saving my life, and probably in making me a better doctor and person. This bundle of pure goodness filled with nothing but unconditional love brought peace and joy back to my life at time I feared it was gone forever.
And with the light he brought into my life, I rediscovered the passion I have to help those affected by HIV/AIDS and work to fight the stigma that too often accompanies an HIV diagnosis. No one, especially no teenager, should have to deal with HIV alone. Armed with Fred, the world's best wingman, I have the strength to continue the fight to make sure that all HIV-positive teens can find the hope that I did.
Photo credit: Jesse Freiden
To stay up to date on all things Fred, visit the website fredsays.org, and while you're there, make sure to check out the new blog, which launched in spring 2013.