Perspectives: HealthCare
Rest to Refuel

March 17, 2008 Print version       Other articles by this author

Nine years after my AIDS diagnosis, I have grown tired: tired of the meds, tired of disclosing, tired of sex, tired of being tired. Once, so passionately committed to living, I've grown, perhaps for the first time, most committed to the rest needed. A few times this year I even contemplated packing my things and moving home with moms in Arkansas. A full-time artist and part-time employee, it's been a full-time job managing my physical and emotional health; and I'm afraid I'm much better at helping others than taking care of myself: anxiously uninsured, on a forced vacation from medications that have helped me achieve and sustain an undetectable viral load and high T-cells, and unsure of how to refuel after being an ear, shoulder, and rock for men in the weekly support groups I coordinate.

The rest that I desire is selfish to some degree. I desire a vacation from the multi-tasking needed to survive as a soldier. Prayer and meditation do not provide respite enough from the climb. Sometimes those of us on the front lines inadvertently foster a delusion that we're braver than we are. People fail to see that, at the end of many days devoted to helping everyone else, we are often without someone to hold our pain. I simply want a moment of rest to be exposed as not so super-strong, bare and unarmed with the weapons that protect me in this battle to live POZitively. I want to admit that I'm not always so sure I'll be here five years from now-- that there are changes in my body gym workouts cannot mask.

Not long after my diagnosis back in 1999, I was referred to this amazing doctor back in Oakland: a savior and saint for me. At doc visits he'd sometimes ask if I was falling in love and/or getting some. It made me feel human, like living was more important than preparing to die, like I was more normal than I'd been in those lonely years before sero-converting. He made me believe that I was gonna be okay, and (a graduate student) without worry about money for meds or the ability to pay for doctor visits. He was as interested in my health as I was. While in his care, experiencing his deep concern and optimism for his clients became contagious. While there was plenty to worry about in those first years, living was about managing my health, not fighting to survive. Leaving Oakland in 2004 meant strategizing a new modality for living well. My first doctor in DC was a woman at Kaiser who didn't seem to want to touch me and who didn't seem at all concerned about my life beyond disease management.

I found ways to keep myself upbeat and inspired. This most often took shape through the work to inspire others. Truth is, I'm not exactly sure how to take care of myself, but fearful that the "work" is taking a toll on my body, the prospect of rest or a vacation from HIV seems a well-earned gift I give myself. I don't mean ignoring that I have it, just working to ensure that it doesn't overwhelm the work I must do to live. Where do those of us who give so much of ourselves refuel when the work we do is so critical, urgent, and necessary? There are so few ready to be visible and open about living with HIV. Does the activism and advocacy around HIV/AIDS die with those who, after years of burnout, decide that they most need rest (temporary or permanent)? Essex Hemphill once wrote "I want to start an organization to save my life." Yet the work to keep the bodies of those on the front lines, healthy, requires that we as a POZ community develop a different way of relating to one another.

Brave Soul Monte J. Wolfe often asks me about managing with (or on vacation from) HIV meds. I consult him about his decision, after his first years with HIV, med-free, to start them. Taking care of one another, giving each other the fuel we need, is more than offering praise or kudos for a workshop, performance, or essay. Those things are as much a part of our work as the jobs we go to. We can become better caregivers for each other. Sometimes it's simply asking: How are you feeling? Nine years after my AIDS diagnosis, that may very well be the question that helps to sustain me, give me permission to rest, not to give up, but to refuel. The concern for those on front lines of the epidemic offers the support we need, not to die for the cause we have so passionately lived for, but to live better for this cause we should no longer have to die for.