I have seen many sicknesses and deaths as a 75-year-old gay male and ordained interfaith minister and caregiver. For years, individuals, families, and communities have called on me before an impending death and on their darkest days to help with the grieving process and for lost loved ones’ memorial services. From firsthand experience, however, I can say there was no preparing America for the massive loss of life and widespread grief caused by the COVID-19 pandemic.
Yet, as COVID-19 quickly spread throughout the country, leaving record-high deaths and destruction in its wake, I noticed familiar dark shadows and similar bright patterns emerge from another pandemic that reached our shores more than four decades ago: acquired immunodeficiency syndrome (AIDS).
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AIDS is a chronic, potentially life-threatening condition caused by the human immunodeficiency virus (HIV). The AIDS virus ravished the United States in the 1980s, primarily infecting gay men in urban areas. From what we know now, pandemics do not discriminate, nor does the following grief.
Currently, COVID is leaving its mark on all of us. Many of us have either been infected by this virus, know someone who died from it, or are caring for someone still battling its long-term effects. For the LGBTQ community, the AIDS pandemic of the 80s had the same fallout, coupled with painful memories of being targeted and “othered.”
The AIDS crisis was also when I witnessed a wave of unsung caregivers step up to help the sick and heartbroken. Forty years later, I see caregivers again stand up to care for and comfort our most vulnerable during COVID.
Similarly, the origins of the two pandemics are shrouded in mystery; AIDS reportedly came from Africa and COVID from China. A festering xenophobic reaction among Americans also followed both viruses: fear and panic, prejudice, then the all too common “us versus them” mentality.
When AIDS and COVID-19 first hit the U.S., prevailing biases, stigmas, and a lack of concern stymied any significant concerted effort to help remedy or slow the spread. Partisanship also entered and stalled our public health discourse and response in both situations.
Nevertheless, as the nation waited for answers and instructions from our leaders, the healthcare community—including caregivers—rose to the occasion during both pandemics. And it was not until the healthcare community switched the narratives from “I to us” and applied sweeping public health measures and scientific advances that we as a nation began transforming AIDS and COVID-19 into more manageable, less-lethal infections.
At the height of the COVID-19 pandemic, the “Family of Choice” caregivers (a phrase prominent during the AIDS pandemic) also reemerged. This time though, we had to readjust our care delivery models in many unique and innovative ways—be it in person if we could, over the computer, on social media, by phone, at doorsteps, through windows, or spiritually through prayer and meditation.
Just as many caregivers have had to adapt to the new circumstances brought on by COVID, I found new ways to expand services to the community. Beyond home and hospital visits, I added online one-on-one counseling sessions and virtual memorial services to my care. These efforts allow me to best meet caregivers and patients where they are. I pray that the variety of giving and receiving care will be a legacy of this most recent pandemic.
Throughout our history of health care crises, caregivers, or as I call them, “silent patients,” have charged to the frontlines to help and care for the afflicted. But who cares for the caregivers?
For the last 22 years, as Chief Advisor for Family Caregiving at EmblemHealth, one of the nation’s largest nonprofit health insurers with an over 80-year legacy of serving New Yorkers, my mission has been to give voice and support to caregivers. EmblemHealth has been a pioneer and thought leader in the family and community caregiving space for decades. Through EmblemHealth’s Neighborhood Care support hubs, LGBTQ Employee Resource Groups, caregiving and peer-to-peer support and training programs, and one-on-one counseling services, we are helping these silent patients receive the support and care they need to navigate this challenging lifestyle.
Recently, I was given the honor of blessing two panels on the venerable AIDS Memorial Quilt hanging at the Marble Collegiate Church in New York City. As I stood to speak, I recognized the patchwork as my dear friend Rev. Chris Glazer had before. I saw it as a living tapestry brought on by pain but curated in celebration. Its varied colors, sexualities, genders, races, ages, faiths, no faith, abilities, disabilities, and health statuses are all woven together, wrapping and warming the world with humankind’s multicolored, multitextured experiences.
The quilt is a perfect example of our shared human story of pain and loss, the strength and courage of caregivers, how far our communities have come, and the triumphant breakthroughs that arise during our most difficult times. It is a lasting reminder for now, then, and forever of how we are all in this together.
Rev. Gregory L. Johnson, an ordained interfaith minister, member of the LGBTQ+ community, and the Chief Advisor for Family Caregiving at EmblemHealth.
Being a caregiver is not easy. Support services for caregivers and the LGBTQ+ community continue during Pride Month and beyond. If you or a loved one needs help and support, click here to access on-demand resources and learn more about EmblemHealth’s Care for the Family Caregiver initiative.