A Requiem for Reggie*

Every struggling adult was once an innocent child. Seeing the fullness of each life helps us become better clinicians and, in turn, provide more meaningful care.

*name changed at the family’s request

 Requiem, noun, an act or token of remembrance.

            I can't remember exactly when I first met Reggie. That memory is either gone or stored too deeply for easy excavation. Fortunately, when we met is not the point. I took care of Reggie for several years, at least six or seven. During that time, Reggie was at various points sober, intoxicated, living in an apartment, living on the street. I never knew, from encounter to encounter, what circumstances I'd hear about whenever Reggie came to clinic. But there was one thing I could count on - one thing that always made me smile whenever I saw Reggie's name on my schedule. I knew that, regardless of what was going on in Reggie's life, as soon as I opened the exam room door, Reggie would burst into a seam-splitting grin, jump up, yell "Dr. Nash" at the top of his lungs and throw his arms around me in a giant and genuine bear hug, as if we hadn't seen each other in years.

            I loved Reggie. I couldn't help it. I saw him as often as monthly for long periods of time, especially when he was unhoused during the winter months or mired in his alcoholism. Reggie would show up in clinic with three to five large bags holding everything he owned. If he was surviving on the streets, he would bring fast food to clinic and unashamedly eat it while we visited. No matter the acuity of his own circumstances, Reggie would end every encounter the same way - another bear hug, and then he'd say, "Dr. Nash, I'm gonna do better." And I, in turn, would tell him that I was proud of him for all he was doing, I was always around to help in any way I could, and that I only wanted him to stay safe and come back to see me again soon.

            Reggie died earlier this year - he had gotten housing again, and was found dead in his apartment, apparently after suffering a heart attack. I was invited to speak at his memorial, but couldn't get away from work to travel to another state. Reggie's mother was, as always, the epitome of grace about this, and she kindly sent me a program from Reggie's service. As I sat and read that, I broke down in tears. All that I thought I knew about Reggie, and I had no idea he loved to sing in his church choir as a child. I never knew he performed in his local Youth Orchestra. I never knew, in short, that Reggie had a childhood just like the rest of us, he had fun as a kid just like the rest of us. Reggie was so much more than I could see.

            There is a gift here, and that's why I'm sharing Reggie's story. For my part, it was only Reggie's death that allowed me to see him in the greater fullness of his humanity. It's an immense challenge to see a person in the fullness of their humanity in a 10x12' room for 15 minutes. Not everyone we see wants to share their pain or their happiness. But everyone is more than we are conditioned to allow ourselves to see in clinic. The monetization of healthcare has robbed us of the opportunity to know our patients as the full people that they are.

            As is true with so many people living with HIV, the disease itself was the least of Reggie's challenges. The fact that he managed to take his daily medications and remain virologically suppressed even while intoxicated and unhoused is a reflection of two things. First, it's a reflection of his deep-seated desire to do the best he could in his circumstances. That deserves to be honored. I sincerely doubt that I could enter into the chaos of homelessness and substance abuse in the winter and maintain the clarity to take daily medication.

            Secondly, the fact that the federal agencies that fund the Ryan White program and the clinics where I practice would consider Reggie to be a success is cruelly short-sighted. For those agencies, a patient is deemed to be a success when they are taking meds and controlling their HIV. Of course, that's absolutely central to optimizing health. It's also not a trivial accomplishment - I get that. However, given that (at least here in the South) so many people struggling with HIV also bear the unnecessary and often unbearable burdens of racism, poverty, homophobia, and denied education, viral suppression seems like a pretty trivial goal.

            Those of us who have invested our professional and sometimes personal lives to eradicating the scourge of HIV have to convince the systems through which we work that eradication of HIV is going to require a serious commitment to changing the environments in which HIV thrives. Creating communities of marginalized, poor, isolated, traumatized and grieving people with undetectable viral loads cannot be considered a "job well done." We will not be done until we are ready to wrestle with the structural sins that oppress our patients and friends. Can we change those oppressive systems? I don't know the answer to that question. I do know that we can identify individuals who need extra help and support and create novel clinically-driven programs to give those people enough self-efficacy to better withstand the headwinds of oppression and ignorance they face every single day.

            I believe in approaches to clinical care that make it easier to see the fullness of our patient's lives. Only when we see our patients as the beautiful, complex beings that they are can we get to the business of caring for them. Reggie's gift to me is the reminder that there is so much more to the hurting, traumatized adults than what I have allowed myself to see in front of me. I'm going to work harder to see the innocent child, the band member, the basketball player, the homecoming queen sitting in front of me. We are so much more than our viral loads could ever capture.

            I'm gonna do better, too, Reggie.