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Hidden Worlds — Social Workers Carry Dismissed, Distorted Voices and Memory Endures
By J. Scott Janssen, MSW, LCSW

When I came upon the abandoned house I couldn't help stopping. What had been the front porch was little more than decaying wood and rusty nails. Someone had ripped the tin off the roof, leaving a sunbaked warble of cheap plywood and splotches of shredded tarpaper. All the windows were smashed. The moldy cement block frame seemed to be the only thing about this place not obliterated by the last 20 years.

I got out of my car and stood by remnants of the old well. Chet had been standing here that hot summer day long ago when I had arrived in a cloud of dust. He was raising a black-and-white POW flag on a bamboo pole in honor of his buddies from the Vietnam War.

"Who the hell are you?" he'd growled.

"Hospice social worker," I'd growled back.

Kicking one of the floorboards of the old porch, I remember sitting on wooden chairs woven with sweat-stained wicker and listening to him talk about how AIDS was trying harder to kill him than the Viet Cong had—and those boys meant business.

"I made it back then," he'd said. "I'll make it back now."

In my mind I can see him spitting streams of chewed tobacco and saliva as he talks: "Three tours of active duty. Tours. Like I was taking a carriage ride through Disneyland or something."

Around back the poles and crossbeams of the old clothesline are still standing, minus the nylon cords where Sheila used to hang the clothes.

"She saved my life," he'd said, "Now I have to show her it was worth saving."

I peer into a bedroom, squinting to adjust my eyes to the darkness. Debris is scattered across the dusty floor. Swaths of wallpaper flake off the walls onto the brown tile like crumpled mats. In my mind's eye it's 1994 and I'm sitting on the floor talking with a 6-year-old boy. Little Chet is pointing at the soldier he'd drawn in green, black and red crayon. He says the soldier is going to die.

"How do you know he's going to die?" I ask.

"He's sick."

"What kind of sickness?"

He looks up, tears in his eyes. "He's got something called AIDS."

We sit silently as he pretends to tie his shoes.

"How do you feel about the soldier dying?" I ask.

"Scared," his voice soft, nearly inaudible. "Sad."

Leaving the window, I walk back into the front yard and sit on an upside-down pickle bucket. Memories flood in—Chet's struggle to survive, fighting to hang on for his family, his fierce belief that "air support" was on the way (in this case it wasn't rockets and napalm; it was the army of researchers he imagined working around-the-clock to find a cure for HIV and AIDS).

Snippets of conversations from long ago come back as though spoken only yesterday.

"Anything you want to say to Sheila, Chet? Anything in your heart you want her to know?" I'd asked.

"I don't know why you stay, baby," tears had rolled down his face, "I never gave you nothing but trouble."

"You gave me what I wanted most," Sheila had responded, reaching out to hold his hand. "You gave me your heart."

"I don't want to leave you and Little Chet."

"You're not choosing to leave, darling. Just like none of your buddies who got killed chose it."

Flies dive bomb me as I wipe sweat from my neck. Memories continue to unspool —Chet's nightmares about God and Satan in a cosmic knife fight over the fate of his soul, paranoia about snipers and booby-traps, his inherent ability to laugh no matter what happened.

In the hours before death, he had come out of a light coma to talk briefly with Sheila in the lonely night. There had been sadness and peace on her face when she told me about how he'd told her it was time for him to go. She'd told him she and Little Chet would be okay. She said a screech owl had cut the silence with a single haunting screech as they held hands one last time before the battle was over.

Back in 2014: I walk over to a cedar fencepost by the driveway. A long file of posts still lines the road but the field wire is gone. This is the post on which Chet swore a crow landed five days before he died.

"He flapped his wings five times," he'd said, "then stared at me a long time through the window, right here in this hospital bed."

"What do you make of it?" I'd asked.

"I'll be dead in five days."

I'd asked if the crow had any role other than messenger.

"He's here to carry my soul away."

I kick an old paint can, half expecting to hear the "caw, caw" of a crow, but all I hear are dogs barking in the distance.

As the images swirl, others that seem to arrive like spirits summoned by this place join them. All have one thing in common: They are faces of people who died around the same time as Chet from the same disease. It was just before that elusive air support actually arrived back in the mid-1990s in the form of a new class of medications, protease inhibitors.

Almost overnight, young people on my caseload with AIDS were being discharged, no longer terminally ill. Though HIV was, and still is, incurable, the need for hospice social workers, thankfully, seemed to have vanished overnight.

These days, few remember what it was like to be a social worker in the late '80s and early '90s working with young people whose lives were being ripped away by AIDS just when they should have been hitting full stride. They were intense years, full of sadness, anger, fear and confusion; full of love, courage, sacrifice and tender moments beyond description.

Back then, there was tremendous ignorance and stigmatization about AIDS. Many struggled in the shadows, preferring secrecy to rejection. Among the social workers at the small hospice where I worked I took most of the patients with AIDS. Over time, I met a small but dynamic community of people in health care, nonprofits, social service, and community groups, as well as people whose churches had opened their doors, all committed to serving those struggling with HIV and AIDS.

It was a world most people had no idea existed and, of course, at its center were those whose lives had been turned upside-down by a relentless disease and the hydra-headed ways in which it could kill you.

This is one of the things about being a social worker that never fails to send a shiver down my back: the way our role allows us to enter hidden worlds. Worlds most people will never see. It may be the hidden world of prisoners or those who are homeless. We may enter the worlds of people with mental illnesses or children who have been traumatized. Maybe we work in a high school and bring our sensitivity to those in the crowd who just don't fit in or with immigrants struggling to find their way far from home.

Often the voices of those who live in these hidden worlds are silenced, vilified, or distorted by societal fears, apathy, or ignorance. This was certainly true for those living with AIDS back in the early '90s. Too often loud, uninformed voices were heard stereotyping and pointing fingers. The stereotypes were usually the same, namely, that AIDS was a disease for gay men and heroin addicts. They were typically laced with moral judgments and implicit messages that those who were suffering had somehow brought it on themselves and were, in sociological terms, "the other."

For me, one of the central gifts of entering these worlds with an eye toward connecting with others and being of service is how quickly stereotypes dissolve and real human beings emerge.

It's true that most of my patients were gay men or had struggled with IV drug use. Though this may be interesting demographically and potentially important if planning public health initiatives, it is meaningless when it comes catching the essence of a single life.

Thinking about those days, it takes my breath away knowing how many faces and names, like those of Chet and Shelia, I carry with me. And it's not just names and faces; it's the minute details of the lives of young men and women who are now gone and who, if they'd lived just another year, would probably still be here. Details like the way that incandescent light reflected off a little boy's crayon drawing of a dying soldier or the way Chet's eyes flamed with life when he told me about the crow.

Entering into these hidden worlds, focusing on the humanity of those who are so often ignored or vilified, puts social workers in a position to become a voice for those whose voices are dismissed or distorted. It also, in a sense, allows us to become vessels in which their memory endures and cannot be erased.

Without memory there is no history. And if history is not informed by concern for lives like Chet's we may not notice how the same issues persist over time and we may not understand the consequences of inaction. Worldwide, for example, AIDS continues to needlessly kill untold numbers. I wonder what Chet would say if he were to somehow learn that the "air support" he prayed for and which had not been available before he died, has now been available for 20 years and yet, for so many, still has not arrived?

Without memory such questions cannot even be asked. Without memory our empathy and concern for those living in these hidden worlds, not just in our backyards but around the globe, may be blunted. Our power as social workers comes not just from serving others as they navigate painful challenges, but in the power of our memory, individually and collectively, as we do so. This power may change us personally, opening our hearts or motivating us to learn, and it can change societies if we insist that real voices (not just those who negatively stereotype or blame) be heard and remembered when debating social policy or constructing larger social narratives.

Having had the privilege of being allowed into the hidden world of those dying of AIDS and their loved ones forever changed who I am. I learned much about courage, dignity, and resilience. Were it not for their memory I would be oblivious to the fact that AIDS is still a daunting problem worldwide and that, closer to home, more than 1 million people still live invisibly in the shadows with HIV (according to the CDC, nearly 16% are unaware they are infected).

Back in those days, I knew many whose names, after they died, had been stitched into quilt panels and added to the AIDS Memorial Quilt. The quilt was, and is, an assertion that these lives were, and would continue to be, important. It was an affirmation of the power of memory to hold safe those minute details of a life and lead us to a better understanding of how these details fit into the larger picture.

As social workers entering worlds away from the limelight, working, as we do, with people struggling with life's visceral challenges, we are collectively positioned to catch these details, remember them, and give them voice.

As I back my car out of the drive the crush of tires on gravel triggers another memory. It was early morning. Chet had just died. The nurse and Sheila were inside cleaning his body. I was outside with Little Chet. We were throwing rocks and talking about his dad. The sound of tires rolling across gravel announced someone coming down the lonely drive. He looked up at me and asked, "Is that the men?"

I looked down the road and saw the funeral home van slowly navigating the ruts that had accumulated where the road curved. "Yeah, it's the men."

He looked down at his shoes. "What happens now?"

— J. Scott Janssen, MSW, LCSW, had been a hospice social worker for 20 years but is currently a private practice social worker in Hillsborough, NC. He authored the book The Dawn Is Never Far Away: Stories of Loss, Resilience, and the Human Journey.