Red Lake Nation News - Babaamaajimowinan (Telling of news in different places)

35th Anniversary of HIV Discovery on April 23

40 million globally live with HIV; 1 million per year die of AIDS

 

April 18, 2019



It has been 35 years since the historic discovery of HIV, the retrovirus believed to cause AIDS.

Following three long and scary 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.

Fast-forward three decades later, in 2017 there were about 40 million people globally living with HIV, and one million people dying of AIDS-related illnesses.

“I either die …or I die.”

Those matter of fact words that were spoken to me still echoes decades later. A close friend faced an uncertain future as a hemophiliac in the mid-1980’s. When asked about his concern over the blood transfusions he regularly needed, his answer came with a sense of acceptance—but not one of defeat.

Sadly, within just a few years, he received blood tainted with HIV. Most everyone living with hemophilia at that time in my home state of South Carolina contracted the virus from that infected supply.

He was the second in our rural area to succumb to AIDS. 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. She eventually lost the other one in 1995. Both amputations, and her now 80 surgeries resulted from a car accident in 1983. To date, she’s received 48 blood transfusions. Virtually every surgery was met with great concern not only to her but many of the nurses treating her when any of her blood touched them. Despite the odds, she has avoided any HIV contaminated blood. Through it all, our journey of shared suffering knitted us to this man’s family.

Decades later, I still learn of the cruel treatment by neighbors, friends, and even 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 for vast numbers. As my own caregiving journey extends now beyond three decades, I can’t imagine doing so with the harsh exclusion this family faced.

Although reports are slowly surfacing about a possible cure for a disease which dominated headlines for years, many now are unfamiliar with the terror of AIDS. A new generation remains all but unaware of the nightmare, sorrow, shame, and the heartbreak endured by so many.

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. Is their pain eased by such a lofty goal from the President? 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 also 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.

Embracing those who suffer is problematic when demanding to first know the cause. I learned that principle when grasping the hand of a patient in a prosthetic limb clinic we partner within 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.

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.

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.

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.

Peter Rosenberger (@hope4caregiver) hosts the national radio program Hope for the Caregiver heard on 185 stations. 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

 

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