Monster in the sack – Illustration of HIV AIDS
Our family’s journey with HIV/AIDS began far too early and far too close to home. In the early 1990s, our own Aunt Dinah became one of the first in our family to fall to the virus. We witnessed firsthand how terrible it was: she lived isolated in the bathtub for months, alone in agony, her body oozing sores left and right while relentless diarrhea drained what little strength remained. That heartbreaking scene is seared fresh in our minds even today. Then came our own childhood friends, one by one, taken by the same merciless scourge. We are lucky, profoundly lucky to still be alive. More family members followed: mother figures and others who succumbed to the disease. These losses shattered us, but they also ignited a determination to fight back, especially in places like Uganda’s Kalangala Island District, where the epidemic struck fisherfolk communities with devastating force. On December 1, 2010 World AIDS Day, we organized a heartfelt celebration on those very islands, a cluster of 84 scattered across Lake Victoria, ravaged by high-risk behaviors, limited healthcare access, and the transient fishing life that amplified the virus’s spread.
L – R: Birungi Margaret, Sarah Kisakye, Bob Mulira; Phot by Philip Kakungulu. On Boat ride from Bukakata landing site to Kalangala Islands
Reaching Kalangala itself was no small feat. The journey required boarding a boat from mainland port of Bukakata and using one of the old ferries that plied the Bukakata-Luku route to Bugala Island, the largest and most accessible of the Ssese Islands. These crossings were often unreliable—ferries ran limited schedules, sometimes not at all at night, and were prone to delays from weather, mechanical issues, or overcrowding. The risks were real: rough waters on Lake Victoria, occasional accidents, and the ever-present danger of being stranded or facing emergencies far from help. For many islanders, these water barriers meant isolation from mainland services, including urgent medical care. What should have been routine trips for treatment or supplies could take hours or days, if possible at all, turning minor issues into life-threatening ones.
The Children Infected & Orphaned by HIV AIDS
This geographic divide severely hampered HIV/AIDS prevention and treatment efforts. Essential outreach; HIV testing, counseling, condom distribution, antiretroviral refills, and education, rarely reached the more remote islands. Health centers were concentrated on just a few larger ones, leaving residents of the scattered smaller islands cut off. Many delayed or skipped seeking care due to the time, cost, and uncertainty of boat travel, allowing stigma, myths, and the virus to persist unchecked. In such isolated settings, prevalence soared often estimated far above the national average—among fisherfolk whose mobility and livelihoods kept them on the water’s edge, away from consistent support.
Dramatic enactment of children fighting against HIV AIDS
What made our event special was its grassroots essence: it was entirely a family effort, funded and executed without a dime of foreign aid. We gathered locals for education, remembrance, and hope, emphasizing the “ABCs” of HIV prevention, a strategy that had become a cornerstone in Uganda’s national response. “A” for Abstinence, encouraging delay in sexual debut; “B” for Being faithful, promoting monogamous relationships; and “C” for Condom use, stressing consistent protection. These simple yet powerful principles, popularized in the early 2000s, helped curb infection rates dramatically in Uganda. Our sessions weren’t lectures; they were interactive discussions, tailored to the realities of island life, where myths and stigma often overshadowed facts, and where the water itself acted as a formidable barrier to change.
Resilience against HIV AIDS
One vivid memory from that day was our creative enactment of HIV/AIDS as a “monster.” We used a sack and mask to personify the virus, not as an abstract threat, but as a lurking beast that had scarred nearly every family in Uganda. Juvenile participants donned the costume, dramatizing how the “monster” infiltrated homes, communities, and futures. It was a powerful metaphor, drawing from local storytelling traditions to make the invisible enemy tangible. Laughter mixed with tears as people shared stories, breaking the silence that fueled the epidemic. In photos from the event (which I’d love to share in an inset here if possible), you can see the raw emotion: children wide-eyed, elders nodding in recognition, all united against this shared foe.
This initiative was part of Kovaca; Kalangala Orphans and Vulnerable Children and Caretakers Association, a project we launched to support those left behind by the disease. Kovaca provided counseling, education, and basic aid to orphans and vulnerable kids, filling gaps in a system overwhelmed by loss. Sadly, Kovaca no longer exists. After our initial push, no one stepped up to sustain funding or leadership, a common fate for community-driven efforts in resource strapped areas. It faded away, but its impact lingers in the lives it touched.
December 1st 2010
My family has always been at the forefront of building better communities, from health advocacy to holistic education in areas of peace building, trauma awareness and ministry leadership. I was profoundly blessed when I learned about the early HIV/AIDS work of the late Sarah Hammond. As a young advocate, she stormed the front lines, raising awareness and fighting stigma during the virus’s most brutal years, those early years when the world underscored the urgency. Her passion inspired countless others, and today, the learning hub established in her memory stands as a beacon. It’s a space for education and dialogue, honoring her vision by equipping new generations with knowledge to prevent history’s repetition beyond health cruelties.
Yet, as we navigate the aftermath of COVID-19, these stories resurface with fresh urgency. The pandemic has triggered deep-seated traumas from the HIV/AIDS era, when the disease was unrelentingly lethal, with no effective treatments in sight. In the 1980s and ’90s, HIV/AIDS evoked terror: unexplained deaths, social ostracism, and a sense of inevitable doom. Families whispered about “slim disease,” as it was called in Uganda, watching loved ones waste away amid rampant misinformation.
COVID-19 echoed this nightmare. The early days of 2020 brought isolation, fear of the unknown, and stigma; people shunned for coughing, communities divided by blame. For survivors of the HIV/AIDS crisis, lockdowns and ventilator shortages reopened wounds: the helplessness of watching hospitals overflow, the grief of mass burials, the economic fallout hitting the vulnerable hardest. In places like Kalangala, where HIV/AIDS decimated fishing economies, COVID-19’s disruptions closed markets, restricted movement, mirrored the isolation that once amplified HIV spread. Mental health experts note a surge in PTSD like symptoms among HIV/AIDS veterans, triggered by parallels in public health messaging, vaccine hesitancy rooted in past medical mistrust, and the sheer lethality before interventions scaled up.
I am a victim of COVID-19🦠😷 myself. I almost lost my life, “in the grave I planted a banana tree.” It was a near brush with death, and to this day I suffer from long COVID. Similarly, millions of children in Africa are enduring a peculiar form of pneumonia that has not been seen before since COVID-19 emerged in 2019. The full impact of COVID-19 is yet to be fully realized.
The numerous high-quality masks I received from time to time from Dan Buttry in the USA have been a lifeline gift. As a global peace consultant and advocate with American Baptist Churches’ International Ministries (now retired), Dan’s generosity extended far beyond borders, providing essential protection during the height of the pandemic when such resources were scarce and desperately needed, especially in our vulnerable communities.
These masks, sent with care and solidarity, literally helped save lives until today in 2025, including mine as I battled severe COVID-19. They stand as a powerful reminder of how individual acts of kindness and international connections can bridge gaps in access to protection, much like the community driven responses we’ve seen in turning tides against health crises.
But there’s hope in these echoes. Just as Uganda’s ABC strategy and community mobilization turned the tide against HIV/AIDS reducing prevalence from over 18% in the early ’90s to around 6% today, COVID-19 vaccines and global solidarity offer paths forward. My family’s story reminds us that change starts locally, with families and communities leading, even without external support. As we honor legacies like Sarah Hammond’s, let’s commit to healing these traumas: through open conversations, accessible mental health resources, sustained advocacy, and improved access across water barriers.
In a world still healing, remember: monsters, whether viral or metaphorical, lose power when we face them together. What’s your family’s story of resilience? Share in the comments, let’s keep the dialogue alive.
Read more about the author here: Philip Kakungulu
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