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HIV and Memories of the Epidemic: The Way We Were

| 4 Comments

The other day, I had a rush of memories remembering how HIV and AIDS affected us in the beginning of the epidemic.  I grew sad thinking about all those we lost.  My peers and I were all at the beginning of our adult lives, and quickly had to reconcile the fact that many of our lives could be cut short. That customary feeling of youthful invulnerability did not apply to us. We were acutely aware of how vulnerable we were..       

It was strange to suddenly realize how I had pushed my feelings down as a way to deal with the overwhelming, almost daily grief we endured in the early days.  One would think twenty-five and thirty year-old memories would be the faded, misty-water-color variety.  Instead, my memories are vivid, surprising accessible, and always overwhelming.  Those I knew who first succumbed to AIDS were acquaintances or friends of friends.  But soon, the the phantom virus was moving closer to me: ex-boyfriends, roommates, and closer friends.    

I had an unbearable memory of my best friend Tom lying helplessly on his couch, having difficulty breathing on a hot and humid summer day in Boston in the early 1990s.  His partner Philip had called and suggested I come by as soon as possible to say goodbye. I was shocked, as I had seen Tom a few weeks prior and he seemed to be rebounding.  I walked into their living room and saw my best friend losing his fight with AIDS. 

Once a strapping young man and work out buddy, he had lost so much weight.  Tom kept insisting that it was cold... so cold.  The memories are cinematic -- it's like I am watching a movie - every excruciating detail captured in close ups.  I didn't know what to say or do, but I had decided I would not let him see me cry.  I avoided looking directly at the catheter in his chest, or IV pole, or the oxygen tubes and tank.  His mother lingered in the kitchen for a bit with Philip, giving me some time to talk with Tom.  We discussed the weather, theater, music, and who was dating who.  This was our normal, routine; catching-up-with-each-other kind of conversation, and I struggled to keep it normal.  But it was far from normal.  After an hour or so, he grew weary, and his voice got softer.  He was talking with his eyes closed, and his breathing remained labored. I was on the floor in front to the couch where he was laying.  I could see he was spent, and I was still unsure of what to say or do...so I awkwardly leaned over the tubes and equipment to kiss him on the forehead. "I'll see you soon, Tom, I love you."  

He shifted uncomfortably, and replied with his eyes shut, "I love you too, Charlie, thanks for stopping by."  Philip saw me to the door with a blank and helpless expression in his eyes.It was happening.  Tom was slipping away.  Not a damn thing we could do about it.  

As I left their apartment, I immediately crumbled.  My knees went weak.  My eyes welled up with tears, and a primal groan rose from the depths of my gut, building until it shook my spirit.  It was a perfect vocal articulation of indescribable and agonizing grief -- and a sound that had never escaped my throat before.  

Oh God, we didn't know how to say goodbye to our friends!   We were in our twenties and early thirties - how could we know what to say?  I should have told him how angry I was because of all of the crap he had to deal with.  I should have asked what I could do for him, if anything.  But I just didn't know how to navigate this.  I should have done something --I should have said something. I was ill-equipped to deal with this. 

Tom died hours later.  The phantom virus had crept closer. I felt helpless, and the silent suffering of unspeakable loss.  The world I grew up in had changed forever.  When would the dying end? 

Within months, new and more effective treatments were introduced: protease inhibitors.  I didn't know how they worked, but they worked!  And soon, those with HIV who were on this treatment started living longer, healthier lives. We didn't see the ravages of opportunistic infections.  It was an amazing development.  Of course the drugs had their own side effects and toxicities, but it seemed we had begun to stem the tide of AIDS deaths.  The phantom was being undone by a new pharmacological super hero.  I was ecstatic, but how I wish Tom had hung on just six more months.  I miss my smart, funny, sweet friend.

Flash forward to the present:   I am acutely aware of how fortunate I am to have been diagnosed with HIV in 2012 and not 1992.  My one-pill-a-day regimen has decreased my viral load to undetectable.  There is no reason to believe my life will be considerably shortened as a result of HIV infection.  My partner and I are both doing extremely well tolerating our medications.

This new class of miracle drugs is extremely effective in fighting HIV, but regrettably has also changed the perception of the disease.  Because people no longer see evidence of the illness as they had with HIV opportunistic infections, many believe now that AIDS is over.  Or that it is comparable to diabetes or any other chronic condition controlled by drugs.

I assure you AIDS is not over.  I am a 50 year old man who just tested positive.  A virus is only concerned with replication.  It doesn't care who you are, who you sleep with.  It exists only to makes copies of itself.  We haven't been able to find a way to eradicate it.  Efforts at creating a vaccine have been disappointing, but there are new promising avenues of research emerging.  News of "functional cures" provided hope, but many believe the news could be misleading. 

We must continue to persevere, and to take care of ourselves.  We need to keep the faith that we can beat this thing.  It is my hope that if we all raise our collective will, voices and resources, we can end this in our lifetime. It is achievable if we work together. 

Don't give up the fight -- keep the faith.   

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Comments on Charlie Finlay's blog entry "HIV and Memories of the Epidemic: The Way We Were"

Thanks Charlie for sharing your story and Tom's story. Both are amazing journeys and both are equally important. I am glad you are doing well and pray for continued health for you and your partner. I have been around the epidemic for 25 years and have had many moments like the one you shared about Tom. I know the helpless anger of only if my friends could have held on a few more months just maybe they would still be here to share a laugh or hug with me. Keep sharing and telling your story and the story of friends. We can't afford to forget our history as it is the foundation of our survival

Thanks, Butch (great name, by the way...). I appreciate your comment and i am grateful that there are fellow travelers who know the trauma we endured, and that still effects us. And I am so happy to hear that you continue to thrive while continuing to share our important history with others. Best of luck to you, my friend.

Charlie, your essay struck home with me. I too, witnessed friends living and dying in the 80s and 90s. Too many. Tears shed, so much opportunity lost. I too, at age 56 was diagnosed HIV positive in 2012, and thanks to the one pill regimen I am able to afford only through my insurance, I am undetectable and healthy. I miss my friends and so wish they could have held on just a little longer. Sometimes I feel guilty knowing that they had not done anything that I have not done, yet they were gone and here I am. This virus will be defeated. I have faith.

Thanks, Ron. I like to think we are here for a reason -- perhaps just to share our stories, perhaps to remember those we lost and honor their memory by continuing the fight. We will end this. Keep the faith!

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This page contains a single entry by Charlie Finlay published on July 21, 2013 6:19 PM.

HIV Disclosure: Finding Pride was the previous entry in this blog.

HIV First Year: In Sickness & In Health is the next entry in this blog.

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