Dr. Robert Garofalo
Chappell on Community: Dr. Robert Garofalo
Thu. August 29, 2013 by Terrence Chappell
That puppy saved my life. It's a little facetious. But I had gotten to a point where I didn't know how to have fun anymore. I didn't know how to laugh. I didn't have peace in my life.
robert garofalo with fred
Puppy love: Robert Garofalo on Fred and their efforts to help HIV+ teens
For most of us, a cancer diagnosis, or any other unfortunate health circumstances are more than enough for one lifetime. Within four years a part, Garofalo was diagnosed with kidney renal cell cancer in 2006 and diagnosed HIV+ in 2010. After his diagnosis, the doctor spent a year in silence of his HIV+ status – outside of his ex-partner, not so much as telling a close friend or family member or to seek help. "It was sort of physician heal thyself and I tried that. I can manage this all on my own. I don't need to tell anyone about it," remembers Garofalo. Even beyond his diagnosis and his yearlong struggle to disclose his status, it's Garofalo's unassuming approach to those same struggles. He's never felt sorry for himself nor does he expect a gold star for this "soldier on" attitude because according to him, there are those who have simply had it worst. It wouldn't be until a year later in 2011 that Garofalo would seek help from a little furry friend.
"One day, and it was after midnight, I was sitting at my computer and I thought I should get a dog," recounts Garofalo. And that's just what he did; he traveled to Gurnee, IL, returned home, and found himself taking care of his new Yorkie named Fred. But what Garofalo didn't realize is that Fred would be taking care of him too. Thus, begun his process of healing, being open about his HIV status, and the start of Fred Says, the nonprofit founded by Garofalo, which supports HIV+ teenagers and adolescents. The new Yorkie owner attributes Fred for bringing magic, joy, and peace back into his life and of course the inspiration behind Fred Says.
Currently, Garofalo is the Division Chief of Adolescent Medicine at Ann & Robert H. Lurie Children's Hospital of Chicago and the Director of the hospital's Center for Gender, Sexuality and HIV Prevention. As Fred Says' founder, Garofalo hopes to place a creative spin around the conversation and support of HIV+ teenagers. Garofalo's story is not simply one about an HIV+ diagnosis patient turned activist, but one about a man's honesty and his navigation through such honesty. Garofalo opens up about his coming out story, his struggles to reveal his HIV status, some exciting new developments for Fred Says, and of course his adorable little pup – Fred.
TC:(Terrence Chappell) What brought you to Chicago?
RG: (Robert Garofalo) I'm from a suburb in New York. My partner at the time was living in Chicago and had a tenured faculty appointment at DePaul as an Italian professor. We did the long distance relationship for a while. But we decided that at one point I just had to bit the bullet.
TC: So, you moved for love?
RG: Yes. I actually moved here with no real job in place. I had a Harvard faculty appointment and was living in Boston. I think people thought I was insane to leave that and come to Chicago for a man. I mean who does that? But I felt pretty confident that I could make it work.
TC: Make it work with your career?
RG: I just thought that with my field in medicine and Chicago being such a big city there was a great deal of potential. There weren't a lot of people doing the kind of work I was doing with high risk and HIV+ teens or LGBTQ youth. So, I felt like there were some real opportunities here. Plus, I was in love. I don't regret it one bit.
TC: How did you make it work with your relationship?
RG: We stayed together for a decade. I'm glad to report that it wasn't one of those moves where three months later we broke up. So, it worked out well.
TC: How did you make it work with your career?
RG: Initially, I worked in this partnership between Children's Memorial and Howard Brown Health Centers. They created a position that was tailored around what I wanted to do. So, basically they combined the academic resources that Children's could bring to the table and the community-based approach that Howard Brown brought to the table. We put those two strengths together.
TC: What was the outcome of that partnership?
RG: The Broadway Youth Center is an outgrow of that partnership. I was a part of the founding team, and I'm glad to say that it's still there.
TC: What was the initial vision for The Broadway Youth Center?
RG: Actually David Myers, who now works for the Obama Administration under FEMA, was a key person in getting the center into fruition. We actually used Teen Living's space on Broadway and Belmont. The whole idea of The BYC was essentially ours. There were four initial partners: Children's Memorial, Howard Brown, The Night Ministry, and Teen Living program. Those were the four initial people at the table.
TC: What was it about working with youth that attracted you?
RG: Well by trade I'm a pediatrician and youth has always been a population that I just wanted to give back to. I went through a lot as an adolescent and young adult struggling with my own issues. There's something sacrosanct about a clinical encounter. Some of these kids may come into an exam room with a medical physician and that may be their only safe space in their entire lives.
TC: Sounds like it's more than a job for you.
RG: I've always felt a great sense of privilege to be doing this job, and I've never taken that privilege for granted. Even to this day, it's really remarkable the opportunity that my team and I have every day to make a difference in a kid.
TC: You mentioned you went through a lot as an adolescent and young adult. Could you expand?
RG: I grew up in a supportive family but not too dissimilar from other LGBT young people, the world around me was very heterosexual and slanted. There wasn't a school dance or family function that I attended that didn't implicitly have this heterosexual slant to it. So, growing up knowing that I didn't fit that scene or that model caused me a lot of distress.
TC: What was your safe space as a kid?
RG: My only safe space was probably my dorm room. [Laughs] I had a great roommate in college; his name was Kurt. He didn't even know anything was going on with me but I felt like he was like a brother. But other than him, I didn't really have a whole lot of adults that I felt like I could talk to about stuff. So, in some ways, that really had an impact on what I wanted to do with my career and how I wanted to make things different for people who would follow.
TC: What exactly did you struggle with as a kid?
RG: I struggled. I struggled with how to make friends. I struggled with dating. It wasn't easy for me. And I'm a person of privilege. I went to Duke University. I don't come from a poor background. I had a supportive family. I had lots of things that should have made my life easy but still as a gay man, things were difficult.
TC: When did you come out?
RG: I came out after college. So, I was a second year medical student. My coming out story isn't something I talk about easily. It wasn't great. I think my family was as supportive as they could be. Now, my family is awesome. At the time did I think they were awesome – probably not. But they did the best they could. And sometimes that's all you can expect from people. They didn't know how to handle it. I didn't know how to handle it and we each did the best we could given the circumstances.
TC: And how is your relationship with your parents now?
RG: My mom is fucking awesome! She goes to Boystown with me. She's walked in the Pride Parade. My family is really great and supportive.
TC: You're also very open about your HIV diagnosis and your struggle with that as well.
RG: I was diagnosed HIV+ in 2010. My favorite quote is from the movie Spellbound. It's this little girl from inner city Washington D.C. Everyone is asking her how could she be in this national spelling bee with her father in jail, her uncle in jail, and her mother is a crack addict. She comes from a bad situation. They ask how on Earth could she be doing so well academically under such circumstances. She just looks straight into the camera and with a hair flip goes, 'My life has been about trials and tribulations and me overcoming them.' I think about her and that movie quote. I've been given some challenges to overcome but not more than a lot of the kids I deal with. I've been given some challenges to overcome but no more than a lot of the kids I deal with. A lot of the youth I deal with have to struggle with just as many if not more than the things I've had to overcome.
TC: Could you walk us through those emotions and moments when you were diagnosed HIV+?
RG: It's very different than many other struggles you deal with in life in the sense that everything else that's going on in your life: cancer, a break-up, car accident, whatever it is; it's kind of a given that the people in your life and around you will rally to support you. I just can't think of anything that's similar to being diagnosed as HIV+, by definition, when you become HIV+ and you're just not sure who's going to be there to support you. You just don't know.
TC: How did you feel about your own HIV diagnosis?
RG: You have a lot of guilt and shame about that diagnosis for yourself. Not only are you worried about how you're going to deal with it but also you're worried about how other people are going to respond to you. There's not another disease out there on Earth that adds that kind of dynamic or that kind of pressure. It was unlike anything I've experienced before.
TC: Were you open about your diagnosis?
RG: In retrospect I did a really poor job at managing it. It was sort of physician heal thyself and I tried that. I can manage this all on my own. I don't need to tell anyone about it. The only person I told was my ex-partner, Gary. I thought I could deal with this by myself.
TC: How long did you try dealing with your diagnosis by yourself?
RG: Honestly, I tried it for about a year. And then for a variety of circumstances including a change of jobs related to Howard Brown I was sort of forced to grapple with being honest about what I was really dealing with. I can remember having a conversation with Stan Sloan; head of Chicago House, whose advice to me was you're going to get through this by telling people what you've been through. I thought that was the complete opposite of what I've been trying, but it worked. I started to be a little bit more open about what I was dealing with. It got easier.
TC: How did it feel to finally be open about your status?
RG: I think it was freeing. Even though being open in this case was practically me being forced to be open, and I don't care to get into the details of that because it's not important. But there were certain things in my professional life that forced me to be open. People were very much misinterpreting a certain change that they saw in my demeanor and where came from.
TC: Your HIV+ diagnosis?
RG: The reality was that it was coming from this HIV diagnosis that I just didn't know how to live with. I mean I had trouble sleeping. I couldn't eat. I definitely suffered symptoms related to post-traumatic stress. I really struggled with my HIV diagnosis. It was weird because I already beat cancer but my HIV diagnosis was really a kick in the ass for me.
TC: So, what helped you be open about your HIV diagnosis?
RG: Ironically, the time I decided to be open was the exact same time I decided to get Fred. I don't know about rock bottom because I was not even close to what rock bottom really is, but let's just say I don't ever intend to get closer to rock bottom than I was at that moment. However, I was pretty desperate for something to change in my life. One day, and it was after midnight, I was sitting at my computer and I thought I should get a dog.
TC: And now you have Fred.
RG: I had gone to see my mother, and when she took me to the airport she took me aside and said, "I don't know what's going on with you but I know it's something. I know you don't want to tell me but I know something is wrong." I didn't even tell her then. But I got back to my place that night and was crying and thought that I got to do something. So, I googled puppy Chicago and up popped this picture of what is now my dog Fred, my little puppy. This was in 2011.
TC: Was Fred your first pet?
RG: I never had a pet, ever. I didn't know how to deal with a pet. I never even thought about having a pet but within 12 hours I had driven to Gurnee, IL and had this little puppy. I remember our first night together because I was just like I don't even know what to do with you. But instantaneously, he made everything go away because he needed me. I couldn't be off my game. I had to be a caregiver again. It was something about being a caregiver to that puppy that started the healing process for myself. So, it was some magic in having that puppy.
TC: So, Fred helped with your healing process.
RG: As much as he needed me, I needed him more. So, that's how I got to the whole Fred Says thing. That puppy saved my life. It's a little facetious. But I had gotten to a point where I didn't know how to have fun anymore. I didn't know how to laugh. I didn't have peace in my life. I spent my day just going through the motions. I was still functional at work. I was getting NIH grants and I was still caring for kids but I was doing it in this fugue state. And then I would go home and all this stuff that was going on in my life just overwhelmed me.
TC: How did you go from buying a puppy to founding your own nonprofit, Fred Says, inspired by your puppy Fred?
RG: I don't think that it's too dissimilar to other HIV+ people. You just don't know who to reach out to and talk to. That's one of my goals with Fred Says – is to make the world a better place one little puppy at a time – not that everyone has to have a puppy. Fred had brought some magic into my life and I wanted to take that magic and do something creative, interesting, and special with it. So, that's why we created Fred Says.
TC: What is the idea behind Fred Says?
RG: The idea of Fred Says was to create a new business model for HIV. I got tired of writing grants to the same places and asking the same people for money. With Fred, I thought let me try to create something that people might not even know that they're giving money to an HIV charity; they just are supporting the cuteness of this puppy. I mean think about the revenue generating power of Hello Kitty and if that power was directed towards a charity. So, the idea of Fred Says was to create something fun and creative that extends beyond the traditional populations that we think of supporting HIV, and to have something that is self-sustaining.
TC: Were you open about your status when you started Fred Says?
RG: When I started Fred Says, I was not open about my status. It's so funny because even the initial parts of the nonprofit about me were very vaguely worded. It was like Dr. Garofalo and his personal struggles. Those were always the buzzwords, "personal struggles". But I would never say what they were. I was just so afraid of being so public about my diagnosis.
TC: So, why did you decide to be open about your HIV diagnosis?
RG: A point came where I thought that I'm kind of being disingenuous to the actual mission of the nonprofit. How can I seriously be out there making the world better for young people living with HIV, and I won't even be honest about my own HIV diagnosis.
TC: What was the triggering moment that led you to be open about your status?
RG: I actually remember last year when I rode there was a procession with a riderless bicycle where openly HIV+ people walk out with this riderless bicycle symbolizing people who are living with HIV. I watched that procession in 2012 not being able to step forward as one of those positive riders, and I thought I was a little bit of a fraud. Jesus, why can't I just step out there and be like fuck I just rode 200 miles, I kicked ass on this ride and I'm HIV+, but I couldn't do it. I thought that next year it's going to be different.
TC: And was it different next year?
RG: It wasn't until Christmas of 2012, and you were there, when I made that video on YouTube, which is now the video that is on the homepage of Fred Says where I really let people into the backstory because the backstory is important. That was really hard for me. I can remember showing that video in Scarlet. I was so nervous. One of my friends was gripping my hand because I was so afraid of what people's reactions were going to be.
TC: What was telling your story to others about for you?
RG: Telling that story wasn't about being self-indulgent. It wasn't about me being voyeuristic and me being out there with my HIV. It was about me being honest.
TC: What did you take away personally from sharing your story to others?
RG: If I want to live in a world where HIV+ people don't have a stigma, than I have to live my life as an HIV+ person who isn't affected by stigma. If I'm going to try to have a nonprofit for young people who are HIV+, than I have to be honest about my own issues with HIV, which is still not the easiest for me.
TC: Do you feel that there's a stigma around an HIV+ diagnosis?
RG: When you're HIV+, it's amazing the little things that are on a front of how much stigma still plays a part in your life. For instance, if one more person, on like Grindr or Scruff, and yes I'm a Dr. and I have a Scruff account, asks if I'm clean or rather I was DDF. I didn't even know what that meant. I thought it meant drug and drama free but it means disease free. That use to drive me crazy. My Scruff profile now has a big plus sign on it because if you can't handle the fact that I'm HIV+ then go away. So, I'm learning to be more honest and open about it and finding people that I want to have in my life that can handle that.
TC: Where are you now emotionally?
RG: I'm back to having both joy and peace in my life. Fred brought both of those back into my life. There's an unconditional aspect to the love you have with a pet.
TC: Fred Says also has an incredible Facebook following as well.
RG: I've been really struck by how Fred Says has comforted people. I mean I just didn't realize that it would take off the way it has. Within two years, we have almost 40,00 fans on our Facebook page. Some of them are HIV specific. So, we get comments like I have a brother who struggles with HIV and his dog is so important to him. There are other comments from people who say they don't have HIV and that they have lupus and if it weren't for their dog they wouldn't be able to get up in the morning – totally transferrable.
TC: What are some upcoming developments for Fred Says?
RG: This year we launched a whole new set of products because again the goal is to come up with plans that make Fred Says self-sustaining. So, we have mugs, plush toys, and t-shirts. I think next year we are going to launch a cartoon version of Fred, so not everything has to be his picture. Sort of like Hello Kitty, because you can only pimp that dog out so long until he doesn't want to get his picture taken. [Laughs]
TC: How do you plan to go about making Fred Says more self-sustaining?
RG: This year we are really going to focus on getting traction to this idea of a self-sustaining charity. I just don't know if any other charity has tried this approach, certainly in the HIV field. The idea is figure out where we are going to get tractions and where do we need to go next. So, we are going to announce new beneficiaries this year, one in Boston and one in Los Angeles. We want to take Fred beyond Chicago. We want to focus Chicago really around brand recognition. We've tried to make the events fun. The Men of Fred Calendar was a totally quirky and crazy idea but it was fun. We're also thinking about writing a children's book. So, we're talking to publishers about having Fred in a children's book. We're also going to try to make some new videos around how pets can help alleviate stigma. Fred will also have his official team for the Ride for AIDS Chicago, so we're really excited about that.
TC: How do you think Fred Says has progressed thus far?
RG: I think for a grassroots charity, we're doing really well. I'm having fun with it. I started Fred Says because it was fun. I've always had this creative streak in me and I wanted a creative way of giving back other than my day-to-day job.
TC: How do you streamline your creativity into Fred Says?
RG: We also have an electronic greeting card called a dollar makes a difference. I want to capitalize on that notion of being able to support Fred without having to give us a million or ten thousand dollars. I want to leverage the power of social media. I look at Boo and he has seven million fans on Facebook and calls himself America's Cutest Dog, which I take some issue with. [Laughs] But if he asked all of his Facebook fans to donate a dollar to support a charity, he'd have seven million dollars to support something. I want to build a social media following or build a base and than ask people to give something but not for nothing. For instance, they could send someone a Fred Says e card that says Happy Birthday or I miss you; and if 30,000 people send that one-dollar card, then that could benefit Fred Says.
TC: How do you feel about your life now?
RG: I'm sitting here today in a beautiful office, with a beautiful life, with a beautiful dog and surrounded by beautiful people – friends and family. I'm a lucky man. It didn't always feel that way but I want to focus on that moving forward.
TC: Would you say you're done healing?
RG: I think I've come to realize that I'll probably spend my whole life healing from one thing or another but that's what we call life. I don't think healing has a beginning or end. I think healing has chapters and for me the chapter I'm currently in is a real good one. It took me a while to get there. In some ways I was my own worst enemy. I was so afraid of being honest of what I was dealing with that I didn't allow people in to be helpful.
TC: What advice would you have given yourself two years ago?
RG: I don't know if I would've done anything differently. I did what I thought was right. I guess my only advice to myself would've been to have a little bit more trust in my family and friends to be there for me. But Fred has helped me build back that trust.
TC: What do you want your legacy to be?
RG: It seems so self-important to think of myself as having a legacy, but if I wanted to have a legacy it would be that I tried to make the world a better place for someone or people. When I'm gone, hopefully someone will say he was a pretty cool dude, he tried to make the world a better place for someone. That would be great. [Laughs]
Learn more about Fred Says at www.fredsays.org.
Interviewed by Terrence Chappell