Reflecting on the 35th Anniversary of Identifying HIV
Following three terrifying years since first learning about a then-nameless but virtually always fatal illness, the world held its collective breath as HHS Secretary Margaret Heckler stood at the podium for a press conference on April 23, 1984. Secretary Heckler announced that Dr. Robert Gallo and his colleagues at the National Cancer Institute had discovered the cause of AIDS, a retrovirus labeled HTLV-III/LAV (human T-cell lymphotropic virus-type III/lymphadenopathy-associated virus), later named HIV. Secretary Heckler went on to express her hope of a cure within two years.
In 2017, reports show 40 million people globally live with HIV, and one million people died of AIDS-related illnesses.
“I either die …or I die.”
Those matter of fact words spoken to me still echo decades later. A close friend faced an uncertain future as a hemophiliac in the early 1980’s. Inquiring about his concern over regularly required blood transfusions, his answer reflected a sense of acceptance—but not one of defeat.
Sadly, he did receive blood tainted with HIV. Most everyone living with hemophilia in my home state of South Carolina during the mid-1980’s contracted the virus from that infected supply.
Performing at his funeral, my wife and I chose a song he often sang during his difficult years. As she sang, she stood somewhat awkwardly on her new prosthetic leg. To date, she’s received 48 blood transfusions from a 1983 car accident that eventually led to 80 operations and the amputation of both legs. Virtually each transfusion caused great concern to not only her, but family, friends, and many medical personnel who treated her. Defying odds, she avoided HIV contaminated blood.
Decades later, I still learn of the cruel treatment by neighbors, friends, and even their family members, as my friend’s parents cared for their son with AIDS—condemned by many to bear their sorrow in isolation. While most disabilities and diseases isolate on some level, ostracizing tragically accompanied AIDS. Reflecting on my own lengthy caregiving journey, I can’t imagine doing so with the harsh exclusion this family faced.
Reports now slowly surface about a possible cure for this once headline dominating disease, yet a new generation remains all but unaware of the nightmare, shame, and heartbreak endured by so many.
An Ambitious Goal
In his 2019 state of the union address, President Trump proclaimed an ambitious and important goal of ending this disease within ten years. One can’t help but wonder how that affects so many family members who quietly visit a grave, memorial site, or the quilt. The loss and isolation felt by so many must still fill their eyes with hot tears.
A caregiver orbits someone living with a chronic impairment or disease. Sometimes, the presumed caregiver (spouse, partner, or family member) walks away. Such was the case for many traveling the dark path of AIDS. In their moment of greatest need, the disease not only took lives, but the stigma often severed the bonds of companionship. Many served as a caregiver for a friend with AIDS abandoned by family—although they themselves carried the disease. They soldiered on, even while watching their impending fate tragically displayed in the life of a dying friend. Others grieved alone when families circled their loved one while excluding a partner.
Touching the Suffering
Embracing those who suffer is problematic when demanding to first know the cause. I learned that principle from a patient in a prosthetic limb clinic we partner with in Ghana. Her outstretched maimed hand bore the scars of leprosy. Admittingly doing so while gulping, I took that hand—while noticing scars running up her arm and her missing leg. Hugging her, I welcomed her into the clinic as she welcomed me into a new way of embracing the suffering.
To our collective shame, too many turned their backs on the sick and dying. While treatment has improved and AIDS doesn’t garner the headlines it once did, the residual scars of abandonment remain.
A Higher Aspiration
Caring for the suffering, regardless of the cause, remains one of our higher aspirations. Maybe the highest. Yet, only doing so to those with lifestyles sympathetic to one’s beliefs inhibits our own hearts to expand. Through many dark roads, I’ve seen the hands of those reaching to assist me in my heartache and loss. Although often serving as a poor steward of the grace shown to me, I’ve discovered the care one receives is best honored when extended to others.
With great zeal, let us eradicate AIDS in ten years or less. Yet, with that same zeal, let us collectively embrace the suffering, and those caring for them, regardless of the cause. Afterall, our paths are linked. Loving another human being means we will most likely one day be a caregiver. Living long enough ensures we will need one.
AIDS is not cured. Maybe the President is correct, and we can eliminate this disease in ten years. But we don’t have to wait ten years to embrace those—and their caregivers—who live with HIV and AIDS. May our passion to care equal our pursuit of a cure.
And as you wish that others would do to you, do so to them. “If you love those who love you, what benefit is that to you? For even sinners love those who love them. And if you do good to those who do good to you, what benefit is that to you? For even sinners do the same. And if you lend to those from whom you expect to receive, what credit is that to you? Even sinners lend to sinners, to get back the same amount. But love your enemies, and do good, and lend, expecting nothing in return, and your reward will be great, and you will be sons of the Most High, for he is kind to the ungrateful and the evil.Luke 6:31-38
Peter Rosenberger hosts a nationally syndicated radio program for family caregivers. For more than thirty years, he’s cared for his wife who lives with severe disabilities. He is the author of 7 Caregiver Landmines and How You Can Avoid Them @hope4caregiver