The Fullest I Can Manage

I was barely twenty-two years old when I tested HIV positive.  That was twenty-four years ago.  A few years back it occurred to me that I had been living with HIV for more than half my life.  This was never supposed to be.  I was never supposed to live this long.  In fact, several years ago, after the first time I’d been sick, I got better and fell into such a depression I wasn’t certain I’d ever dig myself out.  I had something called CMV or Cytomegalovirus.  Because at the time, my immune system was nonexistent and because I had at least one AIDS related infection, I was considered to have full blown AIDS.  It was 1994 and I was living in Seattle.  I was twenty-six years old and going blind.  Each day was like looking through a little bit smaller toilet paper tube.  Prior to that, I had not taken any of the HIV/AIDS related drugs I had seen completely obliterate the quality of life of so many friends.  I refused.  You may call it valiant, but really it was just cowardice.  I didn’t want to get that sick.  This new development, however, frightened me enough that I was against a wall and no longer had a choice.  There was an experimental treatment that’s first dose was to be administered intravenously, so off I went to the hospital, just a few weeks before Christmas, 1994.  After that, I had agreed to go on a regimen of medications.  I had been, at that time, HIV positive for almost six years.  I really believe that my gutless refusal to take any treatment prior to that is one of the reasons I’m alive today. 

                                                                                                                         

If you’ve recently seen the brilliant HBO movie the Normal Heart or maybe you were around then, you know that the first cases of a rare cancer in gay men were reported by the New York Times in the summer of 1981.  There weren’t terms like HIV or AIDS that early.  No one knew what the hell was happening, not even doctors.  For the next 10 – 15 years, testing positive for HIV was thought to be a death sentence.  That’s what I meant earlier when I said I was never supposed to live that long.  When I got better, in 1995, after starting treatment, I grew more and more depressed.  Now what?  I had spent the last half-decade preparing to die.  I certainly hadn’t done anything about living, no savings, no education, and no career.  I’d burnt bridges definitely.  What was the point of living any differently?  Well, I decided, I’d just go on another five years and surely die then. 

It wasn’t as cool to be gay in the 1980s and 1990s as it is now.  You never heard girls or women wish they had a gay best friend.  As far as I can remember, there were only two gay characters on TV at the time, Soap and Dynasty.  No one famous was out of the closet.  Even gay bars and clubs were in basements back then, or their windows were blackened out or boarded up.  No one wanted to accidentally happen by a club, look in the window, and see two men kissing.  Even in a large city, you’d never see two women or especially two men holding hands on the street.  Many gay people were terrified of the idea of coming out to their families.  The fear of being abandoned by the people you count on most was, let’s just say, different than it is now.  PLEASE don’t think that I am, by any means, diminishing the fears of young gay men and women today.  The decision to come out is just as harrowing and so many are still disowned by those they love the most.  It’s horrible to think that the people closest to us can abandon us, either emotionally or financially, for finally accepting something about ourselves we have absolutely no control over.  I am just trying to demonstrate that it was a different time;

the climate was far less friendly.  Some came out with not one person on their side.  Being HIV positive or having AIDS only added to the struggle, doubling the hysteria. 

It was March 8^, 1990, when I tested positive.  I’d already known at the time that I’d been exposed.  When the doctor told me, I felt more than a modicum of relief.    I have to say, it wasn’t as much having suspected it was coming, as much as it was relief in knowing it was the ultimate punishment.  What more could they do to me for being gay, what other penance could I be asked to pay?  I could finally stop running from the shame.    

I’ve told the story already that I was friends, at the time, with several other young gay men all of them within a year or two of my age.  Within two years, eight of us had tested HIV positive.  Less than ten years later, I was living back home in Minnesota when I got the news that the second to the last of the eight had died, leaving me the only one left alive.  Nearly unable to breathe under the weight of that news, I sat on the floor of my apartment in Minneapolis, chairs being too far from the ground.  Naturally I got drunk.  It was nine o’clock in the morning when I cracked my first beer determined to pour over photo albums and reminisce.  As the morning drew on, I began to rip pictures out of the albums, suffocated by the faces of so many dead people staring back at me.  It wasn’t only the seven people I alluded to who had died It was the 1990s and I was gay, having just lived in Southern California, then San Francisco and finally Seattle.  In the preceding decade I had known 73 people who had died of AIDS.  73! 

The guilt that you feel having survived takes on a life of its own, so many people far more talented, far more beautiful with far more to offer than I did, all gone.  How could I not feel guilty?  I suppose there are still moments of guilt, more than another decade later, mostly when I’m shirking my potential and just getting by.  I owe those amazing people much more than that.  I suppose a piece of it is the telling of, not just mine, by OUR story.  I lived through an amazing time in our history, sad certainly; sometimes so much so that you felt you might literally drown in it, but also incomprehensibly life affirming.  You can’t really imagine what it’s like to face your mortality in such a way and at such an age and then come out the other side.  At some point, it became clear that I had very little say in my own destiny or whatever you want to call it.  I had done nearly everything I could to die and, yet, I was still here.  There was drug addiction, two suicide attempts, and such an abhorrent level of self destruction, I’m embarrassed to admit, I woke up one day and realized I had wasted nearly my entire adult life, determined to die.  It was then that I decided, and it was a very definite decision, like flipping a switch, to try and figure out how to live.  It was as simple as that.

I have taken HIV meds, now, for almost twenty years, the side effects ranging from fatigue, depression, painful neuropathy in my feet and legs, weight gain, weight loss, skin irritation, nausea and vomiting.  In the beginning, some of those were constant, but with the advent of newer, better regimens, the side effects seem only to persist in the beginning.  Sometimes you are on the same regimen for so long that the virus develops an immunity and the drugs lose their efficacy.  Then it’s time to start new drugs and with those, a whole new set of side effects as your body struggles to get used to the new poisons you’re willingly taking in on a daily basis.  And then there are drugs you take to alleviate the side effects of drugs you take to alleviate the side effects of the HIV meds.  And so and so on.    

In 2002, I had lost my medical assistance, tied up in red tape over a job that offered health insurance, leaving me ineligible for assistance, yet disqualifying any preexisting conditions, and I went off HIV meds for the first time since 1994.  I was off meds for six months and, by October of 2002, I had pneumonia in both lungs, I had lost forty pounds, weighing around 110 pounds, and I had no immune system.  Once again, I was facing full blown AIDS.  I spent ten days in the hospital, the neuropathy in my legs aggravated by the harrowing weight loss; I was on morphine for pain.  Visitors had to wear masks and hospital gowns and slippers, not for their protection, but for mine.  Anything they might be carrying could be the final nail in my coffin.  Once again, though, from somewhere, I rallied.  Back on meds, surrounded by loved ones, I began to gain weight and get better.  By New Year’s 2003, it was barely evident I’d even been sick, let alone having, again, almost died. 

I went on a new kind of regimen then, something called a protease inhibitor, in conjunction with other anti retrovirals.  A protease inhibitor was a new class of drug in the early 2000s that prevented viral replication.  For nine years, I did great, the virus essentially held at bay by one drug cocktail, but then, about two and a half years ago, that cocktail stopped working.  For the last two years, I underwent five med changes, some complete, others just tweaking one or two meds, or playing with dosages to diminish or eliminate side effects all together.  In some cases, the regimen never started to work.  In others, it worked, but not for long.  Each time a med change was ordered, there were side effects, mostly vomiting, so much so for nearly an entire year, that I damaged my esophagus.  I took steroids to repair some of the damage, but there will likely be some permanent damage, as well.  For the record, I seem to be back on a regimen that is working.  Surprisingly, we’ve decided to restart the original drug cocktail I began in 2002.  The hope was that, the virus had spent so much time in the previous two years fighting off new drugs that it’s immunity to the old, more effective ones had been forgotten.  So far, so good.  I’m doing better than expected and my test results have been amazing.

Many people have questions, I know.  Most people have no idea you can have full blown AIDS and then go back to being just HIV positive.  I should say now that I am not a doctor, nor am I medical professional of any kind, so I can not speak on any of this, except as someone who has lived with it for nearly a  quarter of a century.  I wanted to put it all in writing because so many people now are living this life I am, miraculously, brilliantly alive years, decades past what they expected.  It’s a challenge certainly.  You don’t wish to walk into a gay bar with a sign around your neck proclaiming your status.  I believe most people are less afraid of being exposed to the virus than they are of actually becoming involved with someone who will die.  Obviously that is changing, but not as fast as you might think.  I made a decision, several years ago, not to tell a potential boyfriend until it was clear we were going to have sex.  I guess the theory was that he’d be so taken with me by then; it wouldn’t be so easy to walk away.  We had gone out for a little less than a month and the expectation was that we would spend the night together after dinner and a few drinks with friends.  During dinner, I told him.  His reaction was

amazing.  He took my hands across the table and assured me nothing had changed.  After dinner, as I had said, we were meeting friends for drinks.  It had started to pour by the time we reached the bar, so this kind man dropped me at the door and went to find a parking spot.  I went in to meet our friends feeling on cloud nine.  The guy never came back that night.  I saw him once after and he acted like he owed me money he couldn’t pay back.  There have been other instances sure.  For a long time, I just stopped dating. 

At times, you have this feeling that no one can ever really understand.  Literally, all of the people in my life that could have, have died.  I suppose had this fact become unbearable, I could have found a support group.  In 2003, though, in a dark movie theater, next to my best friend Melissa, I sat dumbfounded as a movie presented the most brilliant metaphor, to me, for living with HIV,  in the most unexpected place, Lord of the Rings: Return of the King.  “Come, Mr. Frodo!' Sam cried. 'I can't carry it [the ring] for you, but I can carry you.”   All at once, the tears came.  It was an emotional moment anyway, but I didn’t cry for Sam or Frodo or anyone in Middle Earth.  I cried because I had ever held anyone at arm’s length because they couldn’t actually understand everything I had been through or was going through then.  For most of my life, I have been surrounded by wonderful, flawed, yet amazing people.  I have rarely lacked support and for that I am so grateful.  So many people, unable to carry the disease, have carried me instead.  Over and over again, I have feared I would be left alone, only to have someone pop up when and where you least expect them to. 

Many people find my attitude about all of this commendable.  I believe the sentiment most often bandied about is what a positive attitude I have after all I’ve been through.  Of course I don’t walk through life whining about my lot in it.  I’ve never understood the point in that, though sure, so many people do approach their life as if it’s a chore they can’t wait to complete and cross of their to do list.  I have been given a gift, really we all have.  Anyone who thinks I have a positive attitude, though, should be beside me on the morning’s when I grumble out of bed, almost disgusted at the prospect of another day, or when I swallow another handful of pills I know will make me sick, without an ounce of gratitude, or a single thought of any one of those 73 people I knew who had died.  I am often grateful there isn’t a loud speaker attached to my brain broadcasting my thoughts.  I’m grateful, too, that I manage, most days, to find some joy in the mundane, that I choose to surround myself with people who also choose to laugh at life’s endless barrage of inside jokes.  Getting up every day and putting one foot in front of the other, attempting to better yourself and trying to be kind to other people no matter what, isn’t, in my opinion, about having a positive attitude.  It’s about making a decision to live.  It is so much easier to be happy in life than to be miserable.  Look around.  I can almost guarantee you that you’ve crossed paths, recently, with someone who chose the other option.  I am never as good as I hope to be.  Being truly good, I think, is a thing rarer and rarer, but I hope that I have touched as many as have touched me.  If that is the case than I’m glad I’m still here.  I hope to honor those who have died of this, with which I live.  I hope, too, that I’ve shed just a little bit of light on what it is like to live with HIV, so much having been said about what it is like to die of AIDS.