Dr. Robert Garofalo had dedicated his career to helping people with HIV. But when he was diagnosed with the virus about a decade ago, he was devastated.
Despite years of telling his patients that they’d be OK after their diagnosis, it was an entirely other beast for the adolescent HIV specialist to grapple with his own diagnosis. Garofalo said he went through the darkest period in his life. He now credits his decision to get a dog, Fred, with saving his life.
“That little sassy, at the time, pound of goodness just resurrected peace and joy in my life,” Garofalo, the division chief of adolescent medicine at Lurie Children’s Hospital in Chicago, told NBC News. “And made me want to give back to the community I care a lot about.”
Fred Says was born out of that desire. It’s a nonprofit created in 2013 with the help of award-winning journalist Zach Stafford to help young people with HIV access health care. The two also became intrigued in finding the best way to tell the stories of others who had struggled with their HIV diagnosis but found hope through the unconditional love from their four-legged canine.
With the help of dog photographer Jesse Freidin and Garofalo’s niece, Christina Garofalo, that interest led to a book. “When Dogs Heal” became a personal project that took years to make and tells these intimate yet complex stories of people across the country.
What the four found throughout the process was that an HIV diagnosis wasn’t a death sentence, that there was a potential to move on beyond the stigma often surrounding the virus, and that loving someone — even a dog — can be radical, Stafford said.
“Even moments like that she was there for”
Growing up in San Francisco, Adam Chang, 35, who uses they/them pronouns, participated in queer youth programs so they knew to get routinely tested and how to have “the talk” with their partners. But when a partner did not disclose that he had HIV, Chang, then 22, was left holding a nurse’s hand, crying in disbelief, as she told Chang that their HIV test came back positive.
After sharing the news with their parents, Chang was ostracized and uninvited to family gatherings — but they weren’t shocked by the reaction. Chang is aware there’s a cultural disconnect since their parents are immigrants — their mother is from Burma and their father is from China.
“They grew up with cultural ideas from Asia with 1970s sex-ed in America,” Chang told NBC News. “For nonnative language speakers, did any of that even get absorbed?”
Though their relationship would eventually mend, Chang found comfort in Laila — a rescue pit bull mix who enjoyed nuzzling her head in their pillow. The routine of taking Laila out on walks and caring for her each day, paired with Laila’s unconditional love, helped them with their mental health.
As Chang struggled with their HIV medication, they felt comforted by Laila’s presence. Chang recalls one night during their first week of using the medication but experiencing such dizziness as a side effect that they had to crawl to the bathroom. Chang noticed their dog following close by.
“Laila was literally there walking next to me down the hallway,” they said.
“I have to get better”
Amador Zepeda, 33, met his four-legged friend while cleaning the Illinois home of one of his friend’s clients. Bella was a Pomeranian who never wanted to leave Zepeda’s side that day and the owner noticed. When the owner had to move to a nursing home, she wanted Zepeda to have Bella.
But one evening while at work in 2016, Zepada’s body ached and he had a high fever so he decided to go home. Looking back, he said he thinks he was seroconverting, which is the transition from HIV infection to the virus’ detectable presence in the blood. Upon entering his home, he was shocked to find his partner being intimate with other people.
Though they broke up, they stayed in the apartment for a couple of weeks. Yet, when arguments ensued, Zepeda said his partner would become violent. Neighbors complained and they were soon evicted, leaving him and Bella homeless and living in a car for six months. Still feeling unwell, he went to a clinic where he found out about his diagnosis. Sitting in a parking lot, Zepada said he contemplated suicide.
“I felt really alone, but Bella just put her paw on top of my hand to comfort me — she knew something was wrong,” he told NBC News. “It hit me. ‘Man, what’s going to happen to Bella?’ And that’s when I started thinking I couldn’t do that. I have to get better.”
A Chicago organization helped the two find a home and creating a routine with Bella helped him time when to take his medication. Zepeda also felt empowered after creating a series of Facebook videos to educate his Latino family and friends about HIV.
“I felt sad about how there wasn’t really anything out there for the gay community, especially for the Latino community,” he said about living in the Chicago suburbs. “For me, the way I was able to give back was through my videos and sharing what I knew.”
And for Saanti M., who spoke on the condition that her last name not be used out of privacy concerns due to the sensitivity of the issue, loving a dynamic, 7-pound Shitzu taught her the importance of self-love. Having been through 21 foster homes before the age of 15, she says in the book that she often looked for stability in other people.
But after having to live with one of her foster moms after her diagnosis — who was uneducated about HIV and would label specific furniture she could only use — Saanti decided she didn’t want her status to hinder her. She got back on her feet and bought Adutchess who loves her unconditionally. Not only has having her allowed for stability and routine, Saanti says her dog has made her feel more secure.
A national crisis
The courage in these stories shows the adversity that comes with an HIV-positive diagnosis. But these accounts of people learning how to overcome HIV is, unfortunately, not new.
Around 1.2 million people in the country are living with HIV, while Black and Latino communities are disproportionately affected compared to other racial groups, according to HIV.gov.
Stafford — who has lost people close in his life from the virus — said the book for him is about the power of love, and loving a dog is a pure form of that for owners. He said he hopes the project shows how HIV isn’t a “death sentence” as long as people have the right support.
He admits he wonders if the people he’s lost would still be around if they had dogs or the right kind of help. Stafford wants people to read the book to see that “if you let HIV-positive people be loved and supported, they can have incredibly, beautiful lives.”
“When Dogs Heal: Powerful Stories of People Living with HIV and the Dogs That Saved Them” is available on Collected Works Bookstore and Amazon. A portion of the proceeds will go to Fred Says to support HIV-positive youth.