The Crash 

I was standing in my office alone, amid a pile of boxes, as we were preparing to move our department from one office space to another.  I was not expecting her call.  I was, instead, intent on completing my packing and on coming in the following day to my new private office across the street in the building my company had just acquired for expansion.  It was Thursday,  the 12^th day of December, 1985, at about 3:40.  The cloudy skies outside cast a cold shadowy darkness into the skylights and windows of the office I had shared with my friend Bernie. The phone rang and I picked up the receiver. I heard her voice and my heart lurched.

I said "Hi...How are you today Dr. S?" 

She said "I am well, thank you.  Listen, I have some news I have to share with you.  As you know, we have been testing your blood sample since August 25^th for everything under the sun and until today, all the tests had come back negative for whatever we were seeking.  However, today, we found out that you are positive for the antibodies that cause AIDS.  Your blood sample was deemed positive by the ELISA test and we ran a more definitive Western Blot test on your sample.  It confirms that you have been exposed to AIDS.  I am so sorry.  We didn't actually expect the results until tomorrow, but when it came back positive, I thought I should go ahead and call you today."

"I see," I said to her.  "Thank you for calling and letting me know."  I replaced the phone in its cradle and stood there, my gaze fixed on a spot far, far away.  I was numb.  I know I must have been thinking something like "What the hell am I to do now?", but I don't remember anything that went through my head.  I was numb, and dumbstruck.  Exposure to AIDS was a death sentence.    I wanted to panic, but I was at work and could not show my reaction. I was going to die.  How could this have happened to me?  The news was devastating.

I was brought back to the present when Bernie walked in, took a look at me and said, "What's wrong??!!  You look like you've seen a ghost!"

I shook it off and replied, "OH!...Nothing." and continued to pack my belongings for the move.

What timing!  It was just two weeks before Christmas. My test results had been due in on Friday the 13^th.  Instead, I actually got the bad news on Thursday the 12^th.  Suddenly, I hated Thursday the 12^th more than I could even imagine disliking Friday  the 13^th.  I would have to face my family very soon for the holidays and I had no idea how I was going to handle this.  If my doctor had called to tell me I had terminal cancer that would have been so much simpler.  I would have just gone home for Christmas and been honest. 

I could not do that with AIDS.  This was, after all, the old joke: "Mom, I have AIDS!"  "Oh, I didn't know you were Haitian!"   Telling someone you had AIDS was enough to send them running in fear, but coming out to them too meant that they ran away in fear and disgust.  I had not approached the topic of my sexuality with my family yet.  

Should I tell them or hide my reality?  What a stupid question!   Of course, I was going to hide it. By making that decision,  I didn't know that I had  basically chosen the path of sacrificing my family interactions to fear rather than to secure the potential for love.  I was destined from then forward to lose a very valuable nine years of my family life through abbreviated visits home and guarded interactions with my family members. They, on the other hand, were able to continue living in bliss without any knowledge of the events in my life.  I was healthy enough in appearance that nothing was obvious and I was careful to protect them from my virus.  If I came home less frequently, it was simply that my work required me to be present on weekends or holidays and they bought my excuses.

But I am getting ahead of myself.  I had just learned of my own mortality and I had not had 10 minutes to digest the information before I was planning how to hide the fact I was dying.  What if my insurance were taken away?  Wow, would I ever be screwed then!  What if someone found out and ratted me out to the boss and had me fired?  To be sick is one thing, but to be sick and without work or medical insurance is another mess entirely.  What a time to live in the US where there is no universal health care and where un-well workers can just fall through the cracks.

I knew that I had to talk to someone.  My partner was away for the evening to celebrate his mother's birthday and wouldn't be home until just before midnight.  I needed help more immediately.  I thought of my best friend at work, Shelly, and asked her if she would agree to go for a drink with me after work and not to mention it to anyone.  She agreed.  When we met, I told her my new truth and watched her eyes widen.  She said to me,"Don't freak out.  It doesn't mean you are dead yet.  You never know how long you might live and we might find a cure soon."  She then offered me vitamins!  I took them, thinking how useless they must be against the AIDS virus, but that they surely couldn't hurt either.  She then added the infamous line "You know, any of us could get hit by a big red bus tomorrow!"  Well, now there is some real comfort for a dying man.

My HIV+ friends and I used to get so infuriated by this hypothetical red bus that never came.  We joked about how at least our death in a pedestrian accident would be an honorable death and how our parents could sob and feel gratified to tell their friends what wonderful lives we had lived.  If we just wasted away with AIDS, we would die a pitiful, painful, slow, agonizing and embarrassing death that would ruin our family names and condemn us to hell, not to mention drive away all of our extended family and friends.

As Shelley talked about us all being killed by the big red bus, she patronizingly patted me on the shoulder and told me to buck up.  It was then that I realized the extent to which two people could observe the same event and come away with two completely different experiences because of the circumstances of their lives.  I began to have a soupcon that no matter how much I tried to explain, no one was going to understand the significance of this infection unless they, too, were infected, and even then, their infection would be very different from my own.  We are all very truly and starkly  alone on this earth, no matter how much we wish to believe otherwise

Realizing that the support I was getting was not what I needed, I took my leave and drove home to my cold, dark and empty house.  It was the perfect metaphor for my soul at that moment.  I knew that I had to reach out to my trustworthy friends or I would end up dead from stress or suicide.  I thought frantically of whom to call.  I tried my friend Bonnie in DC, but she was out.  I then remembered a male nurse whom I barely knew who worked in HIV clinics and who had a great reputation.  I rang him up.  When I told him that I had just found out that I was HIV+, he tried to diffuse my desperation with humor. He asked me "What'd you do, play with too many cocks?  Swallowed a little too much cum, did you?"  I was shocked by the questions, but it took my focus off the desperation for a few minutes.  It did not, however, give me what I needed, so I wound up that conversation and thought about a list of people I could and could not call with this news.

More than anything, I wanted to revert back to my childhood, to sit on my mother's lap and to let her make it all seem OK.  I knew that if I told my mother, far from OK, everything would be out of control.  Finally, I thought of my friend Florence in Caracas and called her up.  She answered and I started to cry and to tell her what was happening in my life.  I was the first person she had known with HIV and she was the first person I had told who cried with me, laughed with me and helped me through those terrible first moments when I was left to myself and my own terrible truth.  She quite frankly saved my life through human kindness and compassion.

Eventually, my partner returned home and I told him what I had learned that day.  He was equally devastated, but in a way far different from my own.  I can not begin to imagine what his threats were, beyond health issues, but he was worried as much about himself as he was about me.  We cried together and then planned for bed so that we could go to work the following morning and pretend that all in the  world was good.

The next morning, I walked into my new office with its single desk, the door that I could actually close and its bleak florescent lighting.  I shut the door.  I had never felt so completely alone in my entire life.  I started to cry and then realized that no one else at work could be allowed to know this truth.  I would have to explain my teary eyes if I continued crying, so I stifled my emotions and began to unpack my things.   When I was able, I opened my door and faced the staff that worked with me and pretended as if business were going on as usual.

People often react to the way I had of dealing with these events by saying "Oh, how brave you must have been!" The way I see it now, bravery has much less to do with one's struggle to survive than the fact that you just have to pick up your life and go forward or die.  There is really no other choice.

People constantly want to know who infected me and how I felt about him.  The truth is that I was infected at a time when no one knew clearly what caused AIDS.  We only knew that it affected Haitians, hemophiliacs, IV drug users, homosexuals and the sexual partners of any of these people or their as yet unborn children.  My partner tested negative, so it was most likely that I was infected before we met.  In fact, I had no idea who had infected me, but had I known, I would have likely watched him die and I would have found great empathy for him and great fear for myself.

As time went by, I learned that the governments of Europe were being much more proactive within their communities to spread the word that the use of a condom could save your life.  In the US, President Reagan did not even mention the word AIDS in public until well into his second term, some six to eight years into the crisis.  The gay community, not to be victimized, organized ACT UP and other direct action groups to hold our government accountable.  They were able to bring a focus on AIDS that helped spread the message that condoms might prevent transmission.  Ultimately, we started taking our own destiny in our hands and started saving our own community with no help from the Republican Right Wing.   In fact, my own Senator, Jesse Helms of North Carolina, did just about everything he could to stall research funds for AIDS, or, for that matter, anything associated with AIDS, because, in his view, we were sexual deviants who deserved our nasty little deaths.  Here, I found a focus for my anger and I wrote letters admonishing the old man for his inhumane and non-Christian acts toward our nation's gay children.

The Burn

I had just been promoted to lead up the programming section for data entry programming in one of the foremost anti-viral pharmaceutical companies in the world.  I threw myself into my work, identifying more and more with the young, successful, ambitious man that I wanted to be and less and less with the person with HIV/AIDS whom I knew really inhabited my body.  My denial was easy enough to fake at that time.  I wasn't taking any medications and my health was relatively good.

Doubt did creep in.   If I caught a cold, I wondered if it would turn into the dreaded pneumocystic pneumonia (PCP) that killed over sixty per cent of AIDS patients.  I feared the air in the woods for the fungi that I could inhale and the migration of fungus to my brain.  I had to wash and peel all my raw fruits and vegetables before I could eat them and I wouldn't eat anything raw:  no runny eggs, no rare meats, no sushi.  I had a water filtration system installed at my home to make sure my well water was safe to drink.

I watched as my friends began to fall ill, one by one.  First, there were rumors about people in the community that I didn't know personally, but people I knew by sight.  Then I would see them, their bodies gaunt, with purple Kaposi's Sarcoma (KS) lesions on the little bit of exposed skin that they would allow to be seen in public.  Then the news would come around that they were dead, just like that.  Sometimes, the transition to death was brief and shocking.  At other times, the poor soul lingered and it was reasonable to pray for relief of suffering as quickly as possible.

Soon, good friends started to become distant.  They sounded strangely funny on the phone, their voices harsh and hoarse.  When, weeks later, we would finally see each other, it was obvious that something was wrong and my friends began to have unusual health issues.  They were going blind from cytomegalovirus (CMV) or developing any number of strange illnesses from shingles to meningitis.  Otherwise, there were simply the tell-tale signs of weight loss, fat redistribution (yes,  I lost my ass to AZT!), and gaunt faces. 

It was soon obvious that this disease was much more widespread than any of us had ever expected. Among the tribe of guys whom I knew well, there were about a dozen or more who were infected at about the same time.  Some of us  lost touch with one another over time, only to learn that this one or that one had moved back home to live with his family and that he had died unexpectedly.  We all knew what that meant, but we let the lie be perpetuated.  It soon became frightening to invite friends over to the house for dinner.  God forbid you slice your finger open while cooking dinner and have to explain why you all had to go out to eat instead.  For those of us who were single and positive, life was even more difficult. They couldn't just meet someone new and let their relationship proceed as normal once they knew their status.  Instead, they had to have the talk..the one that kills a relationship before it is even conceived.   More and more, we grew to feel ourselves as a band of brothers who understood life as we faced it, but a band of brothers who were isolated from the larger community around of us.  Our lesbian sisters, however, were heros.  They stepped in and took over, helping nurse those of us who were rejected by our families and fearlessly treating us with our funky weird illnesses that struck fear in everyone else.   The gay male community owes a huge debt of gratitude to our lesbian sisters for standing by our sides and holding our hands as we died in droves during the 1980s and early 1990s.    We never truly reciprocated in their fights against breast and uterine cancer.

Eventually, I consulted my doctor about my own mortality and was told to get my affairs in order.  I asked how long I was likely to live and was told that it didn't matter, that I should make sure that my affairs were in order because there was no cure for this disease.  I pressed the issue of how long I could expect.  I was told that I probably had no more than a couple of years to live.

I consulted a lawyer to obtain a living will, a healthcare power of attorney and to bequeath my belongings to those who mattered to me.  Three months later, I learned that my lawyer had died of AIDS.

° ° °

I walked into the dental school at a local university hospital.  I was here because my partner was a close friend of our former dentist. I had been forced to stage a disagreement over my care and to take my dental issues to the University.  I could not possibly tell my partner's friend - and risk the news getting out to others - that I had HIV, but I couldn't expose them to my blood either.  I had no choice.  Besides that, one of my best friends worked as a dental technician for the dentist.  The risk of revelation of my secret was just too high.

I took my place in the dental chair.  After a few minutes, a person walked into the room.  I could not discern the sex of the person because of all the accoutrements: mask, gown, goggles, hair-net, gloves, and even shoe-coverings.  All of the equipment in the office was covered in aluminium foil and plastic wrap.  I felt so totally belittled that I could hardly breathe.  It was obvious from all this precaution that I was extremely contagious with a particularly virulent strain of virus, or these people would not have been so utterly protected.  A more senior dental student came in to do the initial exam.  He wrapped my tongue in gauze and pulled it out to inspect it.  "Hairy Leukoplakia on the right lateral tongue," he casually called out to the assistant across the room.

I knew the term from my work in clinical data management. "What did you say?" I asked the dental student.  He said "You have Hairy Leukoplakia on your tongue.  It is a form of cancer.  Do you want to see it?  Yours isn't so bad.  Some people get it so badly that their whole mouth and throat are covered in a white fuzzy covering.  I mean, it can get really bad!!" The tone of his voice was one of excitement and thrill as if he were watching the Discovery Channel and had just found a rare animal living in my mouth!

"NO, I don't want to see it."

I left the office in full panic.  I went straight from that chair to burst into the HIV clinic where I found my friend and nurse Suzie.  She took a look at me and said "Honey, what's wrong?" 

I said, "I just had a dental appointment at the dental school.  They told me I have Hairy Leukoplakia!"  With the words falling from my tongue, the tears began to fall from my eyes.  Death was no longer some distant event that I could ignore.  It was coming and soon.

Suzie took me aside and looked at my tongue.  She said, "I don't see anything, honestly.  Listen, here is what you do. Go to the pharmacy on your way home and get a bottle of mouthwash and rinse with it twice daily for a week.  In the meantime, make an appointment with your regular doctor and have it checked out.  Don't "neurose" over it, darling.  You will be OK."

I gargled in the parking lot of the local pharmacy and spit the mouthwash out on the pavement.  The next day, I was in my doctor's office at 8 AM.  She took a pap smear of the area on my tongue to see if it was cancerous, and found that there was nothing there.  The fright had been for naught, but the damage was done.  That chink in my armor was exposed and I now knew the face of death personally.  I also knew that I didn't care for the casual nature with which some health care providers treat the mortality of their patients.  Yeah, you have cancer, wanna see it?

° ° °

My first best friend, Ralph,  died in 1987.  Out of fear, my partner had insisted we stop inviting Ralph to our home.  He worried that Ralph would have a seizure while visiting us and that the local volunteer emergency teams would talk about it and, soon enough, we would be suspected of having HIV as well, which in fact, I did have.  People were being burned out of their homes in Florida and Ryan White had been forced to change schools in Indiana.  Here we were, a gay couple, living in rural North Carolina, where the political climate was very conservative and non-accommodating to gay people in the best of circumstances.  We retreated into a cocoon of our own making.

The week before Ralph died, he called us to his mother's home in the western part of the state where he had gone to die.  We had not seen him in over three weeks, and I was leaving for London for two weeks on business two days later.  The four hour drive after work gave us all of half an hour to visit with Ralph before we had to return home.  In that half an hour, he lectured us about having abandoned him.  He told us that love was the answer and that we had failed the test, in effect.

I looked at  Ralph.  In the three weeks that had passed since I had seen him, he had lost 30 pounds of his body weight.  The skin around his face and eyes was stretched over his cheek bones as if he were a survivor of a concentration camp.  His eyes were sunken into his head.  His hair had fallen out.  In this image, I saw my future and it scared the hell out of me.  On the other hand, I didn't want to show him how frightened I was.  My partner spoke up defensively to interrupt Ralph as he talked of what we had done wrong by him, and I found myself telling my partner to let Ralph talk.  Talk he did.  The most excruciating part was seeing my future in his eyes and knowing that he had felt so isolated in his last weeks.

I was in London when Ralph died.  His funeral was held before I could return home and his parents had his obituary written to ask for donations to the American Cancer Society as a means of deflecting rumors that Ralph had AIDS.  Even in his death, they could not accept his reality and honor his truth.   I never had any closure on his death.

° ° °

Jorge was a Cubano from Havana who had come to the US in the Marielito boat-lifts of the Carter Administration.  He lived as a gay man in Miami, New York and Washington, DC, in the late 1970s and early 1980s before he met and partnered with my good friend Donald.  In 1988, during the spring, I was mowing the grass at my home when the phone rang.  My partner called me to the phone. It was Donald calling to talk to me.  He knew that I was HIV positive, and I was the only person he knew who had been open with the rest of our friends about my status.  He called to tell me that Jorge was sick.   He had been admitted to the hospital with PCP.  I went back outside to finish the lawn but I soon broke down and crumpled onto the ground to cry.

Jorge was sick for over a year before he died.   By the end, he had KS lesions that had eaten through the skin of his arms, legs and face.  He had gangrene on his arms and legs and the doctors sent him home to die without any hope of recovery, very little in the way of pain management, and no hope to end his life early.  He was told to wait to die and suffer through it the best he could.  My hero, Jorge decided to end his life on his own terms.   He claimed to have spilled his morphine down the sink, and had the doctor refill his prescription.   He then took all of the pills at once.  Three days later, he died, claiming his body and his life for himself.

After he was cremated, Donald brought his ashes down to Durham for a memorial service where we all gathered at my friend Ken's home.  At the specified time, we walked down to the edge of a pond and Donald said a few words about Jorge.  When he was done, he opened the bag of ashes and reached his hands into it as if it were a sack of flour and started maniacally sobbing and tossing the bone fragments and ash into the pond.  I remember watching my friend sob and cry out "Goodbye baby.  Goodbye my love," as he tossed his partner's bodily remains to the wind.  I remember all of our friends standing around sobbing.  I remember thinking it won't be long now.

° ° °

My partner and I began to grow distant from one another.  He would tell me later that he was trying to protect me, but I understood who was being protected and who was being hurt.  He became extremely controlling of me, and very demanding that things be done in specific ways.  For example, if I offered to fill his glass with soda, he would insist that I fill the glass with ice cubes, then rinse them with water and strain the water off before pouring the soft drink into the glass.  Every request came with a set of standard operating procedures that made my life miserable.   If I chose to garden for the day, he would sit inside the house and then complain about the work I had done that day only after it was completed and couldn't be changed.  In his controlling manner, he found solace, but he made my life feel more out of control than ever.  I grew to dislike him and his rules.  I especially disliked that he relied on me more and more to support him financially.  He bought a sports car and obsessed over its perfection.  If there were no problems with the car, he would search until he found an imperfection and then would take the car into the shop for repairs.  How many months did he miss contributing to our mortgage or utility payments because his "penis car" wasn't perfect and needed work?  It wasn't simply that the money was missing and I had to replace it, it was also that he relied on me to cart him around when his car was in the shop.  I could tell that his obsession was a matter of denial and that he just couldn't face up to the reality that he was living with AIDS in his life. 

By controlling both our lives, he felt he was in control of life itself, but it doesn't work that way.  He was driving me away with each day that his behavior worsened.  By this point, I had begun group therapy to deal with my HIV status.  It turned out that my main focus was relationship therapy, not HIV/AIDS issues.  Not only was I dying, but I was miserably co-existing with a controlling partner.  I worked through the issues with my group until I eventually found the courage to see that I could take my life back once again.  It would not be easy, but I resolved to ask my partner to leave, so that I could die happily and in peace.  I just had to bide my time until the moment was appropriate to make the change.

° ° °

A few years passed and more friends and acquaintances died.  In 1994, I left for London for a three week business trip.  While I was being driven to the airport, my friend Ken was being taken to the emergency room where he died just a few minutes later.  I boarded my flight without knowing that he was dead and continued on my journey.  My friends had decided that it was better not to tell me because I had just learned two weeks earlier that my dad was diagnosed with stage III-B lung cancer.

While in London, I was busy trying to get an idea of how severe my Dad's cancer was and what options he had.  I learned that there are only four stages of that kind of cancer and that his was quite advanced.  When I asked my colleagues in cancer research, they gave vague answers that spoke of some hope.  I was able to figure out slowly that my dad wasn't going to be around for much longer.  It was sounding like a matter of months and I was three and a half thousand miles away.

On returning to North Carolina, I walked into the house and was greeted by my dogs and my partner.  We talked of small things before, about half an hour in, I asked, "Have you heard from Ken?"  I knew by the silence, by the shadows of my partner on the kitchen wall as he reached for the towel to dry his hands. He had no need to tell me.  I started to cry.  I learned of Ken's death and that I had missed his funeral.  Our friends had decided to keep me in the dark during my trip, but planned our own memorial for Ken a month later when all of us could be there.  It was small consolation.

Meanwhile, my dad grew sicker.  He pulled me aside one day when I was visiting him and told me that he didn't understand my homosexuality, but that he accepted me for the person that I was.  It was the most freeing thing that anyone has ever told me, but it also crushed an aspect of my personality.  I was no longer in need of the mask that hid who I was from the world and that sought conditional acceptance based upon societal norms of success.  In July, I was standing at the foot of my Dad's bed when his blood pressure dropped and his heartbeat straight-lined on the EKG monitor above his head.  My mother hysterically called his name over and over and over until we were finally escorted out of the room where he had died by the tearful nurses.

It occurred to me later that I had partnered with a man who was the epitome of my dad when I was a kid.  The manner of our relationships revolved around the same dynamics of seeking approval and when my dad told me he accepted me for who I was, I no longer needed his approval for anything.  It also became apparent that this emancipation also freed me of the need to please my partner.  A few months later, I asked him to leave.

° ° °

I began turning down travel at work because of chronic sinusitis and ended up reassigned to a writing group, consisting of myself, alone.  In my office, I was able to isolate myself from most of the aspects of my job that had been my defining character.  I had seen myself  as a young, visionary, systems design person.  I had imagined championing a successful redesign of our business that would get our drugs to market sooner and thus save the lives of my friends.   Unfortunately, the only friend I had left from the early years who was HIV+ was Donald, but I was working for us both and the countless others in the world who suffered from HIV. The sense of importance that I gained from that dream helped me cope with my illness.   I had actually seen myself aiding other people living with AIDS.  Instead, I soon found myself compiling a rather important, but far less glamorous document and the sense of self-worth that I had maintained waned.

I went back in the Infectious Disease clinic and I discovered that my count of immune cells was dropping, as was my weight.  I had chronic sinusitis and I was increasingly depressed.  Work had become drudgery for me and my partner and I were heading toward ending our relationship.  I sat down one night and realized that I was dying and the sooner the better as far as I was concerned.   I thought about suicide yet again.  I no longer had an identity.  My male friends were mostly dead and I was not at all opposed to joining them.

I soon found my job too much to take.  I talked with my therapist about leaving work on disability.  I inquired about the process and soon found that I was qualified.  When the letter arrived from the US Government, I learned that I had been placed in the  "terminal" category of disabled people.  That made it official:  I was leaving work to die.

° ° °

Lazarus

My transition from work to my personal vigil and the slow waiting for death was abrupt.

I left work one afternoon and never returned.  I went from structured life to a life that was not structured at all.  I watched my health continue to wane, and sat at home trying to think of my identity—who am I?—now that all of the masks I had worn in my life had been taken away.  I had come out to everyone I knew who mattered in my life.  I had left my job.  I had asked my partner to leave.  I had steeled myself for the transition from life to death and was simply waiting for it to come to pass.  It didn't.

I began to live my life on a day-to-day basis.  If I was lucky enough to find companionship and temporarily to find love, I went with it.  I continued to garden and to do my household chores and began to identify with being disabled and dying.  I put little energy into anything and expected little from life.

When I would go out to meet people, inevitably, the first question was "What is your name?"  The second was "What do you do?"  I had particular problems with the latter question.  If I answered with what I used to do, by saying that "I used to work in the pharmaceutical industry," then I dreaded the idea that they might ask, "And what do you do now?"   If I chose to be deceptive yet honest, I would answer "Not much of anything, really," without revealing more than I had to.  This always seemed to leave people thinking that I was a shifty character.  Finally, if I came to them honestly, genuinely and openly and stated "I am on disability, waiting to die from AIDS," I would get a look of surprise and shock.  Fairly quickly, my potential date would  move on to the next person at the table.

I found the development of new friendships difficult and with the loss of so many friends, my support group had been decimated.  My life was in limbo.  It was particularly difficult when I would say hello to a younger gay man, who would tell me, upon learning of my HIV status, that I should have worn a condom!  Imagine that...a rebuke from a young man who didn't even know that when I was infected, we didn't know what caused HIV and could not have known how to protect ourselves.  How infuriating that one would be so cavalier about this admonishment, as if dying were not enough!  The lesbian singer Ferron sings about youth: "Youth is rude and walks right pastÉbut soon will have the chance to feel as I do."

° ° °

In 1995, I was offered a new drug to help me fight my HIV.  It was called Crixivan.  The pills were huge, like something you would try to feed a horse.  I can't even remember now, but I think I had to take six of them every 8 hours without fail and they required drinking large amounts of water to prevent kidney stones.  The schedule of the drugs meant that my life was built more and more around being awake every eight  hours and I was not able to do that without intense fatigue.   The large quantity of pills and water meant that I felt bloated most of the time or that I was up and down all night for trips to the bathroom.  I soon found myself sleeping a lot more, in multiple shifts,  but my health improved.  I stayed on Crixivan for about five years.  My viral load was kept at an undetectable level and the number of my immune cells improved.  Eventually, I had to switch from Crixivan because of drug failure and side effects.  Luckily, there were other drugs in the same class , known as Protease Inhibitors.  My next drug was Kaletra.  Soon, I began to experience elevated levels of triglycerides and cholesterol and I had to switch again.

By now, I was learning that switching medications was a life changing experience.  Every drug had its own set of side effects and the effects on the body were often significant enough to change overall behavior.  The number of medications that I had to add to my regimen increased with each drug that I took.  Some of my medications brought out my latent diabetes, some aggravated my arthritis, etc., and the number of prescriptions I was taking daily went to over 20.  When I had to sleep every few hours, I didn't wander far from my bed.  When I had diarrhea 3 to 5 times a day, I didn't stray far from a bathroom.  My most frightening experience was when I was given a drug that came with a warning that a certain percentage of people who took the drug died a sudden death from anaphylactic shock and that no one could  predict if I would be in the affected group.  Swallowing that first dose took a good deal of chutzpah, but I did it like a trooper.  Eventually, even that drug failed me.

All the while, as I moved from one drug to another, the statistics that told my doctors and me how well I was doing were going up and down.  I could not decide whether I should plan for a future or for a funeral.  I developed an approach to life of living without a goalÉnot having any plans more than to be at home for Christmas if I were still alive.  I was still in limbo. I didn't have a self-identity and I didn't know if I were living or dying.   I assumed the latter, as everyone I knew died sooner or later.

Eventually, I learned that this particular situation has a name:  Lazarus Syndrome.  This condition is a form of post-traumatic stress syndrome that affects people living with HIV/AIDS, and specifically, those who were diagnosed in the 1980s and who have continued to survive their disease.  The gist of the matter is this:  You were supposed to die and you didn't, so what are you going to do about it now? The main criteria for this syndrome seems to be long-term survival, loss of identity, loss of jobs, the effect of watching one's friends die and the building of an expectation that one would soon share their fate.

The fact that we were diagnosed in the 1980s highlights this last point and defines us from those who have been diagnosed since the advent of the newer drugs.  These newer patients have not seen the severe side-effects, nor the deaths of their friends from AIDS.  Instead, many of them report that their lives are relatively unaffected by the dosing regimens of their medications and they go on with life.  One of the few things that we do continue to share is the stigma of having HIV/AIDS as seen by the non-infected members of our culture.

So, when you don't know if you are living or dying and you have a terminal illness and no identity, what can you do?  How do you shake that ?  How do you find your way back to yourself, the true you?

I heard a rumor that the Biblical story of Jesus and Lazarus left out some important details.  I have not been able to confirm this story with any theologians, but it makes for a good story.  According to this rumor, Jesus came into Lazarus' village and he was approached by the friends of Lazarus who were weeping.  When Jesus asked why they wept, they explained that Lazarus had just died.  Jesus went to Lazarus and resurrected him and after a while, left town and left Lazarus behind.  In this version of the story, the villagers who had seen Lazarus as a dead man could not quite cope with his having returned from the dead.  As a result, when Jesus left town, they put Lazarus to death by stoning.

° ° °

Rebirth

Perhaps it started out with boredom.  Perhaps it was my need to connect with a world larger than that contained within my house.  Perhaps it was to counter the idea that I was going to die and leave no legacy of import if my life continued on its path.  Either way, I began to use the Internet to interact with and meet people.  In the telling of my story, I found that there was a lot of interest in what I had to say and apparently, in how I managed to say it.  I personally can not see myself as any kind of particular hero, but I heard from people that they found my story phenomenal.  I think I also found that many people in this world are living behind a mask and wish to live genuinely.  When they find someone who is honest about himself or herself, warts and all, it seems to resonate with whom they would like to be.  I am not sure I believe that is a driving force in our society, but it might explain some of the interest in my work.

At any rate,  I began to participate in a number of HIV support groups and I soon found that many of the people that I met there shared aspects of my life.  Frequently, though, they were filled with self-doubt and expectation of death.  Being with them was quite a downer.  As a result, I began to seek out other groups that were more positively focused on life and living.  Anger breeds anger, hatred breeds hatred and negativity breeds negativity.  The good news is that affirmation breeds affirmation.

Still, reality is also reality.  In January of 2004, my last HIV+ tribemate, Donald, moved back to North Carolina to die.  He had been living with HIV for as long as I had been.  He was part of my support group.  When either of us received bad news from our doctor, we would call the other one with the fear of death and end up laughing until we cried tears of joy.  It turned out that Donald had been hiding some serious health issues from me and he was no longer taking his medications.  He had given up the fight, but had not told anyone.  From January until about May, our small remaining circle of friends would individually deal with him and wonder if something wasn't "off" but not having been around him that much, we didn't see the full picture.  Finally, around May, we all talked and put our notes together.  We realized that Donald was dying and needed palliative care.  The only doctor who would take a terminally ill "new" patient was my own, so we signed him up and took him in to find out that he might live until Christmas if all went well.  Instead, he died just before September 1.

For a while, I wandered around with the knowledge that I had outlived all of my tribemates who had been diagnosed at the same time as me.  It was a terribly lonely feeling and a very frightening experience to know that the next person who will die will be yourself.  I questioned what happens in tribes of indigenous people when they go extinctÉwhat happens to that last survivor?  Is he left to fend for himself until he dies?  Is she murdered by other tribes so that the tribal wealth can be taken, or does she find a new tribe and have herself adopted into their society?  I didn't know what I should do, but I did know I wasn't ready to die and I didn't want to live without good friends.

A couple of years ago, I found a group of people online who welcomed me to their forum and offered me unconditional love.  On World AIDS Day, about two years ago, I wrote a personal newsletter to remember my lost friends and the need for more action surrounding the World's AIDS pandemic.  The leader of that group, who also happened to be a filmmaker, wrote me and had me post my letter on his group's website.  Not long after that, I was invited to participate in an interview for their next documentary.  When I spent a week with the crew of that film in January of 2005, I found a tremendously positive environment, a loving, caring and inclusive world that jarred me loose from my inertia.  I now count them among my friends.

had also  posted a note about having Lazarus syndrome on the same website.  A few months earlier, Roger Humes had posted a copy of a short-story on that topic that he had written and had dedicated to my experience.  He turned out to be a poet, and in the process of thanking him and getting to know his work, I submitted a few of the poems I had written over the years about my experiences as a gay man living with HIV/AIDS.  He published my work on his website.  Later, I began to work with Spanish language poets to translate their works for publication on the site that he manages.    In the process, I met several very good poets and learned a lot about human nature, about the Spanish language and about poetry.  Again, I made more friends from Chile to Mexico.

What I didn't realize at the time was that I was again finding my writer's voice.  By working with the writing of others, I began to unblock my own writing skills.   One day, I awoke to the reality that I have now defined who I am again.  I am a loving, caring human being who is living with HIV/AIDS.  I am a friend.  I am a poet and a writer of short stories.  I am a translator of Spanish language poetry, but most importantly for me, I am genuinely who I am to the best of my ability.

° ° °

There is plenty of work available for people to combat the ongoing and worsening AIDS pandemic.  Most of the medications that extended my life are too expensive for the massive numbers of people in the Developing World who need access to them.  There are more than 40 million people living with HIV around the world right now.  They need to be educated fully about transmission mechanisms of the virus and how the use of condoms can stop the spread of AIDS.

A few months ago, I was jarred to read in a mainstream gay magazine that a gay man and his editors had written a story about the first AIDS drug "ACT".  It had come to the point that people in my own community were so ignorant about the epidemic that they didn't know the name of the first drug to fight AIDS was "AZT",  I was so thoroughly appalled that I wrote an immediate letter of protest to the magazine.  If we don't care enough about our past to know our own history, we will be doomed to see HIV on the increase again in the gay communities of the West.  In fact, this is happening.    Additionally, the practice of unsafe sex among HIV+ gay men is causing the development of resistant viral strains that get passed along with existing wild virus.

These new issues of ignorance have driven me to continue living and to continue writing as often as I can about my experiences.  I am now a Human Rights Activist and an HIV/AIDS activist and I am hoping to change the world for those less fortunate than myself.  If we all decide that we can help others, even when we are not the most fortunate people ourselves, then the world can be a better place, if only in our own hearts.  And that is a good place to start!