PORTLAND – Thirty years ago, I was just a teenager anxiously waiting to graduate from high school. AIDS was a mysterious disease that no one knew anything about.

But by the time I was out of college, the epidemic was in full swing. From experts to laypeople, the medical community was mystified and fear was rampant and insidious.

At the time, one of my colleagues and closest friends came down with the flu. His diagnosis was a classic case of the way most HIV cases played out back then.

With model good looks and a promising career, he called in sick to work one day. Nonchalantly, he brushed it off as a common cold — as if a sneeze didn’t send waves of terror down his spine like the way it did down the spines of all of us who feared death and disease in a way none of us would have ever anticipated.

His flu-like symptoms soon developed into pneumonia and a litany of medical crises followed: pneumocystis, cytomegalovirus, Kaposi’s sarcoma. They were all words one had never expected to learn, much less use on regular basis.

Yet, in time, they became commonplace. And his story played out like so many others did back then: the obligatory coming out to family, only to then reveal the more devastating diagnosis that led him to do so in the first place.

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Like anyone with a terminal illness, he had his good days and he had his bad days. His health would suddenly improve and just as quickly degenerate. There was no predicting how things would play out, with one notable exception.

Like so many others, the diagnosis was the same: He was going to die. It was just a matter of time, an oft-repeated phrase of doctors still grappling with the mysterious illness back then.

His nurses, though trying their best to make him as comfortable as possible, still trembled with fear through their hazmat gear whenever a needle had to be used.

I can’t recall how many months this odyssey stretched on for, but by the time he died, it was 1990 and I had moved to New York. In New York, the energy of the city met the fear and anger of the dying and the terrified and gave meaning to a larger movement, a movement the world had never seen.

Not just in New York but around the country, volunteers had banded together to create hotlines, hospices, and organizations in the face of doctors who didn’t care, nurses who wouldn’t touch or families who had rejected their own for fear of who they were.

If I wax nostalgic here, please forgive me, as it was a time when a sea change was in the air. Open and frank discussions about HIV and AIDS had begun and people no longer assumed you had HIV or AIDS simply by association. Panic and fear took a back seat to action and collaboration. Although none of us could raise the dead, our efforts were finally making a difference.

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Flash forward to life lived now in Maine. In slightly over a year, nearly 100 clients have been added to Frannie Peabody Center’s roster.

Many are men and women forced to live in the margins because their society or culture still stigmatizes them or views them as outcasts.

Although it may no longer be a death sentence, an HIV diagnosis is now more likely accompanied by a host of other issues ranging from substance abuse or clinical depression to homelessness or incarceration.

And while it’s a proven fact that stable housing can help people living with AIDS live healthier lives, the wait for housing assistance for a person living with AIDS in Maine now exceeds two years.

It’s true that people living with HIV do indeed lead full lives these days and that promising medical advances offer even more hope on the horizon. But the issues facing people living with HIV or AIDS are as serious as they were 30 years ago.

I recently spoke with a former coworker with whom I worked all those years ago when our friend and colleague was grappling with his AIDS diagnosis.

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“I still think of him all the time,” she told me, “and wonder what it would be like if he were around today.”

Then she paused for a moment and said, “Those sure as hell were some unfair years, weren’t they?”

Thirty years may have seen a lot of progress, but I couldn’t have said it better myself.

 


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