When The World Changes [Update 2020]

Anyone asked to describe my family when I was growing up would have quickly observed: “normal, average.”  And by average, I mean boring.  Two parents, three kids, two cars, dog and cat, dinner at the table and Church most Sundays.  To search for any reason that we were not “average” was a ticket to a quick nap.

But in the summer of 1983, we became anything but average.  We were sucked into a national tragedy, and experienced firsthand what everyone else watched play out on the nightly news.

You see, in 1983 our Uncle Don died from AIDS.  He was one of the first, and his experience, our experience, would forever change our family, and ultimately all of us.

Uncle Don, Dad’s brother, was always the life of the party.  A born salesman.  As a teenager, growing up poor in a small Virginia town, he convinced my Grandfather to buy a brand new ’56 Chevy.  Fully loaded, it even had power windows.  For a brief period, Uncle Don and Dad were on top of the world, and wore that car out, until it dawned on my Grandfather that it was impossible for him to make the payments.  The boys were relegated to the family pick-up, but not after a great time, made possible by Don’s charm and salesmanship.

Don’s charisma wasn’t lost on his nieces and nephews.  Visits to our home in Arkansas were anticipated with great excitement.  He entertained us with stories of his travels and the people he met.  As the series “Roots” raised everyone’s interest in genealogy, Don spent months tracing our family as far as he could (and confirmed, to our great disappointment, that we were not related to anyone famous or wealthy).

In 1982, Don asked us to come back to Virginia during our summer break.  Over the phone, he explained to my parents that he had been diagnosed with cancer, and his prognosis was unclear.

The person that greeted us was not the Uncle Don we knew, but was thin, gaunt and visibly shaken.  He explained to our Dad that his cancer was in fact AIDS.  Uncle Don further explained that he had led a secret life since college.

We didn’t know much about AIDS in the summer of 1982.  In fact, the disease didn’t yet have a name, as “AIDS” wasn’t settled on until later that September.  Our knowledge seemed limited to what we didn’t know: we didn’t know what caused it; didn’t know how it spread, and didn’t know how to treat it, let alone cure it.  All we really knew at that time was that it struck quickly, was spreading at an alarming pace – primarily among homosexual men – and was always fatal.

At the time of Don’s revelation, my understanding of homosexuality, for that matter, sexuality in general, was very limited.  Ironically, the first time I was confronted with the concept was at Church.  In 1977, the Churches in our town participated in a nationwide campaign to boycott the ABC’s series “Soap,” because Billy Crystal’s character was openly homosexual.  Being Methodist, and therefore adverse to any controversy, our minister chose not to preach about the subject.  Instead, flyers promoting the boycott were available.  After reading one, I had to ask my Mom what homosexuality was because, at 11, I wasn’t familiar with the concept.  And until Don’s revelation, I hadn’t thought much more about it, other than the insults “fag,” “queer,” and “homo,” that adolescent guys constantly threw at each other.

Don’s news was devastating to our family.  We were hit a viscous one-two punch; knowing that a member of the family not only had an incurable disease, but had also lived a secret life.

He was a gay man.  We had a gay man in our family.

It was more than any of us could absorb.  Most devastated was our Grandfather.  He never said much, always expressing his thoughts with his ever present smile – but his smile was gone now.  The only thing he knew about homosexuality was that it was sin.  Most difficult for him was the question that he could not resolve – how did this happen?  Or, more to the point “did I cause this?”  He began asking, repeatedly, what he did wrong.  No one could give him a satisfactory answer.

Despite our shock and sadness, there were issues that needed to be addressed quickly.  Since no one knew how the disease was transmitted, we weren’t completely sure about our own safety.  There was real concern whether the nieces and nephews should even be with Don in our Grandparents’ house.  These fears were overcome, but they never went away.

Also looming was what to tell our friends back home.  This was the early 80s, and society hadn’t yet embraced accepting people’s differences.  To the contrary, at the time, being “outed” as homosexual was used as a threat; ironically, not only by those looking to condemn the lifestyle but also by vocal advocates such as “Act Up,” who were aggressively pursuing mainstream recognition and acceptance.

We had told friends that Don had cancer.  What now?  For the average American family, this was scandal, and that was not in our vocabulary.  If anyone knew the full story, surely it would lead to gossip and questions.  Even if we weren’t openly confronted, discussion and questions couldn’t be far from the surface.  You didn’t have to look hard to see what was happening to other AIDS victims and imagine what was in store.

“How did their Uncle get AIDS?”

“Serves him right.”

“Who else in the family is like that?”

“What if someone else in the family has it now?”

“I hear you can get it if they sneeze.”

“Is it safe for our kids to go to their house?”

For a long time, little was said outside the family.  In hindsight, our friends, many of them, comforted and supported us despite our insularity.  We were embarrassed, we were scared, and frankly we were afraid of what other people thought.

Looking back, it’s difficult to acknowledge that we gave a minute’s notice to our issues, given the issues Don was facing.

The biggest issue confronting Don was basic medical care.  In the early 80s, it was not unusual for the medical community to turn its back on AIDS patients.  More than one hospital denied Don admission, even when he exhibited serious symptoms.

After several months, Don was accepted into a study at the National Institute of Health (“NIH”) in Maryland not far from his home, experimenting with Interferon as a possible treatment for AIDS.  By participating in the study, the NIH agreed to treat the disease to its conclusion.  This was an extremely lucky break, and mood in the family lifted with the fact that Don would get top of the line care, and the hope that maybe this new treatment would be a cure.

Throughout the next few months, Don traveled to NIH for periodic treatments.  On at least two occasions, we visited him, and met his friends and neighbors.

These visits had a profound impact.  Don was allowing us into his secret life, part of his community in Northern Virginia.  As a 17 year old boy from small town Arkansas, I was sure we were about to witness a freak show.  Going into our first visit, I braced for the worst, and was ready to punch the first person that got out of line.

To my great relief, embarrassment, and undeserved enlightenment, nothing could have been farther from the truth.  It was readily apparent why Don was close to the people we met.  To a person, Don’s friends were much like him; that is – they were outgoing, intelligent and caring.  Many were highly educated and successful.

Simply put, their sexuality didn’t define them.

For us, Don’s friends were an immediate and much needed support group.  They helped us understand what we were facing, and what was to come.  Most of all, they were there for Don and provided him unconditional support.  In several regards, the members of Don’s “secret life” were the truest and most sincere people we encountered during this time.

What struck me most about Don’s friends was their willingness to help us, despite their situation.  Many already had lost friends and some had even lost partners to this disease.  They were dealing with their own anxiety and grief.  They understood too well that their grief highlighted the very real possibility that they could be another victim of the disease.  Despite their acceptance of us, at some level, they carried their grief and fear alone.  Like Don, some of his friends also maintained a secret from their family and work.

[2020 Update] It was also during this time that we met Dr. Anthony Fauci.  This didn’t really register until seeing him on TV during the COVID outbreak.  Mom and I recall that we likely met him in Don’s hospital room during a summer visit.  I was struck by his accent, we were about the same height, and I thought his glasses were cool (for the ’80s).  He was the first true New Yorker I’d met.  Don introduced us and he smiled and said “why don’t you go do something so Don and I can talk?”  I was startled by how polite and abrupt he was at the same time.   I also remember when we got back to Don’s room Dr. Fauci was gone and Don was very upset.  Like us, Don’s visit was Dr. Fauci didn’t sugarcoat the reality of things! 

The care and support we received from this group was in stark contrast to what we encountered in other places.  Across the headlines and TV the message was clear – this disease was to be feared, and fear was reaching a fevered pitch.  There were those around us that were sure this disease was divinely ordained.  Jerry Falwell himself, the leader of the Moral Majority (and ironically from Lynchburg, Virginia, the same town where Don, my father and I were born) proclaimed AIDS was the “gay plague,” brought by God to check society’s unbridled immorality.

There you had it – the “majority” was scared, and drew from their fear the need to find blame.  And they were adamant that one of ours was part of the problem, and by extension, we were, too.

This message didn’t just come to the house through our TV or newspapers, it visited in person as well.  One day while we were visiting, my Grandmother’s minister stopped by her house.  Ruby was deeply religious and an active member in her church.  At one point during the visit, Ruby grabbed the minister’s arm, plainly in need of reassurance.  She asked what he could tell her about her son.  I sat beside her as he politely, but firmly, explained that she should prepare herself because heaven didn’t accept people like Don, despite her faith and prayers.  I could not understand how anyone, especially a minister, could be so cruel to such a wonderful soul that was obviously desperate for help.

During the spring and summer of 1983, Don’s health deteriorated rapidly.  And just when we thought we were at our limit, our Grandfather was diagnosed with lung cancer, and died suddenly.  There was no doubt for any of us that Don’s illness was a contributing factor.

After my Grandfather’s funeral, we made the trip to NIH to visit Don.  Since our last visit, the number of AIDS patients being treated there had exploded and the atmosphere had changed.  The study regarding Interferon had failed and had been discontinued – replaced with crisis management.

For the critically ill, which now included Don, the bright and hopeful environment was gone, replaced with a hastily constructed ward of temporary patient rooms separated by plastic sheets.

Everyone wore biological suits – masks, gloves and boots.  Only one visitor was allowed in a room at a time.  Each “room” had an ante room to suit up for a visit, and to return before exiting, sealing all gear into a bio-hazard waste bag for incineration.

Dad suited up and explained to Don that their father had died.  At this point, Don was in a coma, and his only response was elevated vital signs, which the nurse took as a sign he recognized Dad’s presence and perhaps understood what he was saying.

The plan was for adults to suit up, one by one, and talk to Don.  I was told I could visit with him if I wanted.

There was no way I was going to do this.  I was furious, and scared.  This man took a favorite Uncle away, probably killed my Grandfather, devastated my Grandmother, and caused untold grief and embarrassment on our family.  I didn’t have anything to say to him, and I was sure that it was dangerous to get close to him.

Fuming with anger and fear, I noticed my twelve year old sister; who, without fanfare or help, was suiting up to visit Don.  She walked to Don’s bed, alone, held his hand and told him how much she loved him and cared for him.

In that moment, my little sister helped me to finally make sense of this nightmare, and in the process taught me one of life’s biggest lessons.  Grace is a journey, not a destination, and the path requires us to selflessly work to understand those around us and provide our support and care.

Don died shortly after that visit.  He was one of the first 2,000 of now 675,000 victims of AIDS in the United States.

After a year of turmoil, in less than two weeks we lost two people we loved very much, and it was devastating.  We wanted to return to normal, to be average, but that wasn’t coming back, at least not like it had been.

Instead, we had to prepare for the new normal, and take stock in what we had learned.  And despite all the unanswered questions we had learned quite a lot.  We learned that tragedy can visit anyone, no matter their circumstances and without any reason.  We learned that there is good and bad in all walks of life, at all levels, and that a person’s character has no relation to their status or acceptance in society.  Instead, a person’s character is revealed by their actions, their struggle not just to cope with life and make sense of it, but to help those around them do the same.  And we learned that truth can be a bitter pill to swallow, and maybe even unpopular, but it is the only cure for ignorance, which creates fear and hate, which are both toxic.

Most of all, we learned that even an “average” family is dysfunctional, and sometimes can take you to very scary places.  Despite that, or perhaps because of that, if we are open to the possibility, those scary places can also be where we learn and truly understand unconditional love and grace.