There is Zee
Strong, speaking out on social media as a straight man living with HIV, manic
from sleep deprivation after weeks working on his Digital Living Quilt project.
There is Thomas Davis before he found a paid position at the Black AIDS
Institute, who did it all for free, who valued his volunteer projects more than
rent, who once spoke at the National HIV Prevention Conference without
mentioning he was sleeping in his car.
And now that
satisfying disco tune has begun spinning again, and I understand its meaning.
Our instinct to work without guardrails is part of our history, baked into our
DNA as activists from the earliest years of the AIDS crisis.
Self-care was
a luxury in the 1980s. It often felt like we were all going to die, so we made
a karmic deal to fight until that time came. What’s the point of pacing
yourself in a world that is ending?
We attended
protests in wheelchairs, like Olga. We were taken away by ambulance, like Wanda
and Larry. Our very sickness—the body wasting and lesions, the suffering and
the mourning—was used as a tool for our activism. We fought until we died and
then even beyond, our ashes thrown onto the White House lawn in a final gesture
of spite and fury.
We were taught
that our survival was linked to our willingness to get empowered and get busy.
Many long-term survivors are a testament to that. But the equation isn’t
absolute. AIDS has stolen the lives of people who were the very personification
of empowerment. The epidemic can be random in its brutality, and that only adds
to the guilt of surviving at all.
You can’t help
but wonder what is driving our frenzied lives of activism today. Are we doing
this work for our own survival? For a piece of glory? Are we seeking
forgiveness?
“I feel like,
as a newer advocate, I haven’t suffered enough,” Julio Fonseca admits, even
though he was diagnosed with AIDS 10 years ago. “I don’t bear the physical
battle scars of the early years.” Julio mentors newly diagnosed people at
Whitman-Walker Health in Washington, DC, and is a program manager at AIDS
United, but it has taken him years to recognize his contributions as worthy.
“In the past,”
he says, as his voice lowers, “I sometimes thought if I pushed myself to the
point of illness, it legitimized my contribution somehow.”
It is a
troubling admission, but I don’t have to break that news to Julio. He knows. “I
had late-stage symptoms when I was diagnosed,” he explains. His initial
hospitalization was harrowing. “I don’t think I ever processed it emotionally.
I jumped into all kinds of volunteer work without having dealt with the pain of
my diagnosis.”
Julio believes
that HIV advocacy can become escapist behavior, obscuring unresolved distress.
“I think anyone who has tested positive and wants to get into this movement
should explore trauma-informed therapy first,” he says. “If you haven’t dealt
with your stuff, there’s almost no opportunity for self-care.”
It might also
explain why some newly diagnosed people immerse themselves in the HIV arena to
an unhealthy degree, racking up multiple obligations and unrealistic
expectations. It’s as if their original trauma keeps trying to express itself
by returning to the scene of the crime.
“Overcommitting
can be a natural reaction to complex trauma,” Katharine Campbell, PhD, LCSW,
tells me. Psychological trauma care is her specialty. “But our reaction to
trauma is only negative if it is dysfunctional to us. It could be healthy too.
This is not one size fits all. If I am not taking my medications or getting
enough sleep, then clearly that is not healthy anymore.”
Working within
a movement that lacks strong societal support is also a factor, Campbell
believes. “Microaggressions about HIV, those constant demeaning statements and
experiences, impact your brain. There’s no way we are not impacted, even if we
don’t believe them. You have to figure out how to respond to those messages.
For some people, the response is to be hypersensitive and use advocacy to
channel their feelings.”
This
environment can have an effect on our HIV-negative allies as well, a condition
known as vicarious trauma. “You cannot witness a story and not be affected by
it,” Campbell cautions. “For instance, before I worked with domestic violence
survivors, I never thought twice about people walking too closely behind me. So
if I am working as an advocate for long-term survivors and hear those stories
or I deliver test results in an HIV clinic, it impacts how I think and react to
the world.”
Campbell urges
advocates to do the one thing we usually do terribly: take care of ourselves.
“As a clinician, I include self-care as part of my ethical mandate,” she says.
“Am I taking care of me? Am I modeling what I expect others to do? You might be
able to do this on your own, or you might need outside guidance. Self-care
doesn’t have to mean going on a vacation. It is different for everyone.
Self-care is as complex as human nature.”
The HIV/AIDS
epidemic isn’t so unique in this regard, despite our tribulations as a
community facing a devastating new illness. It’s possible to look toward more
mature social and racial justice movements to find wisdom about how to cope
with fighting for change in a largely inhospitable atmosphere.
For Larry, who
has stepped away from several of his volunteer commitments since his
hospitalization, self-care has meant listening to his body. “I’m more relaxed
now,” he says, although he can’t resist taking a victory lap for the very thing
that physically clobbered him. “But that needle exchange legislation we were
working on in Tennessee?” he mentions proudly. “We got it passed!” There is
constant tension in our work between our triumphs and the price we pay for
them.
Olga has
become more discerning about which events she attends. “There’s a workshop
coming up about domestic violence and HIV,” she tells me, the excitement
swelling in her voice. “I’ll get to be a presenter for the first time.” There’s
another conference only weeks later, but Olga won’t be there. “Before my
stroke, I wouldn’t have given it a second thought. I would have done both.
“I wish I had
listened more closely to the people around me,” Olga admits, thinking about the
ordeal that nearly killed her. “They tried to warn me I was running myself
down.”
Olga has not,
however, ruled out marching back to Washington, DC, for another round of
protests. “If something really scares me,” she says, providing an admittedly
low threshold given our current landscape, “then I will go back. Definitely.”
“Is it worth
my T cells?” Julio asks. It has become his self-care mantra, demonstrating how
far he has come in valuing himself. “I don’t have time for interpersonal
bullshit. If you hear somebody say something ignorant about HIV at Starbucks,”
he advises, “it’s OK to walk away. You don’t have to provide a full educational
moment. It might not be what you need right now.”
Julio is still
learning to heed his own advice. “I feel guilty when I say I can’t do something
or when I see a phone number calling and don’t answer because I’m at dinner.
I’m still trying. It’s hard.”
Wanda will be
65 years old this year, and the milestone has her thinking about some changes.
“I am pacing myself,” she claims. “Sometimes, less is more.” She doesn’t intend
to leave another conference in a vehicle with a blaring siren.
Wanda’s son
wants her to move in with his family. He admires her advocacy but wants to keep
a closer eye on his mom. Wanda is willing to consider it—but not just yet. She
has another timetable in mind.
“After 2020,
maybe,” Wanda says. Just the mention of the year makes me shudder with
exhaustion. Looming ahead of us are months of grueling politics and intensive
organizing and voter drives and protests and town halls, all of it requiring an
army of committed volunteers.
It is an
irresistible and dangerous brew for any HIV advocate who can’t say no.
Mark S. King is a writer and
long-term HIV survivor. His blog, My Fabulous Disease, has been nominated for a
2019 GLAAD Media Award. In April, he checked himself out of the
hospital—against doctor’s orders—and flew to Minneapolis for an HIV-related
speaking engagement and workshop.
SOURCE: POZ DOT COM
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