World AIDS Day 2023

Dec 1st, 2023

Image copyright: Daria Nepriakhina

This is a paper I wrote back in graduate school. I think it’s title “Nothing is Broken” is fitting as I make sense of surviving a pandemic.

How do you talk about surviving a Holocaust?  How do you talk about it when there isn’t anyone to blame or point to for the “cause” of your suffering.  How do you talk about it in a way that recognizes that you just happen to be lucky?  There is no reason you survived while so many of your friends, lovers, family, protectors, mentors and trail-blazers didn’t. Yet, we talk about it.  We have to.  That’s our job as survivors.  It is one of the responsibilities I feel to the more than 1,000 friends I personally have lost since 1981 and the millions of others who maybe aren’t so personal.   Victor Frankl in his book “Man’s Search for Meaning” talks about the guilt and the responsibility felt by him and other survivors of the Jewish Holocaust.   Reading this book was the first and only time I felt like there was something written that came close to my experience. 

The next question then is, where to start?  Do I start with the first one?  Antonio.  I don’t know Antonio’s last name.  In those days we didn’t really share more than we had to, and last names was more than we needed to share.  He drove a big yellow Caddy everyday to the park where I first found the “gay community” in my rural 12-year-old world.  Antonio was like the flamboyant protective mama who knew everyone, was suspicious of someone who wasn’t known, and taught me how to “watch yourself” as he liked to repeat over and over and over again, often to my teenage rolling eyes.  When your gay in a conservative world, you want to hide, you create a secret life and world, and you try to protect it.  I went to the park to express something that I couldn’t talk about, and learned how to live with the secrets from the men who I found there.  See there were folks who DID know what I was missing, what I didn’t understand, and Antonio was one of them.  For more than two years my world and life seemed to “work” in some strange way.  There was my real life at the park with my friends and lovers, the men who taught me how to operate in a hostile world, the men who understood me without explanation.  There was also the other world of my family, church, school, “friends” who had no idea about the drug use, the drinking, the sex, or the secrets I had no other way to express.  Antonio became my biggest guide, protector, and friend.  I later learned this was a role he fulfilled with several others as well.  He was my gay big brother who helped me navigate and pick up the lessons that were so necessary to survive as a gay man in the late 70’s.  Antonio in so many ways represented my salvation, the spot of sanity in what felt like an insane world.

So when Antonio showed up one day about 80 pounds lighter, with brownish/purple spots on his arms and face, we all knew he had “it”.  “It” didn’t have a name yet.  We only knew that “it” was killing gay men, and that no one cared, and no one talked about it (including us), and everyone wanted to tell us it was our fault just because of who we were.  “It” had gotten Antonio.  He died a day later.  The last time I saw him, we didn’t talk about “it”, we didn’t talk about politics, we didn’t talk about men, or even about the weather.  We just sat there on the picnic bench feeling the warmth on our faces, and drinking beer.  I left with a hug, and a kiss on the cheek and Antonio holding my face in his hands, looking into my eyes and telling me to “watch yourself.”  This time I didn’t roll my eyes.  It meant more than it ever had before.   It was like some “Movie of the Week” and he was trying to drive home the moral of the story.  No one ever talked about Antonio after that.  This is actually the first time I have talked about Antonio.  There was no funeral, no memorial, no touching remembrances.  Antonio was my protector and friend.  I loved him for being the big brother I always wish I had.   Antonio was also one of the few men in my life at that time that never tried to seduce me.  When I asked him about this, he replied in that oh so flamboyant way, “Honey, I think you need me to be your friend more than you need to be in my bed.” It was 1981 now.  I was a 14-year-old kid who had just lost his best friend and there was no one to tell that to, no one who could tell me how to deal with this.  I did what I was taught by my worlds to do.  I shoved the emotions and grief down, hid them away, and pretended that the sudden burst of tears or anger were merely some response to something someone did or said.  The drinking and drug use increasing wasn’t really “that bad”.  At least I could still convince myself of that.

By the time I found out I had “it” in 1990, we had learned what “it” was.  But it was still not okay. There were no treatments for AIDS yet.  They could respond to some of the opportunistic infections, but it was still a death sentence.  The only real question was “how long”.  Back then, the gay community ostracized you because they were afraid of one more death to deal with. They didn’t want you to give it to them, and we didn’t want to be reminded of our grief.  The losses and devastation were just too much to handle for some of us.  Outside the community it was even worse.  Mainstream society judged us, labeled us and tried to pretend we weren’t really human beings who were dying.  Friends had lost their homes, families, jobs as they lie on their deathbeds   All because a virus had infected their body and that scared too many people.  Then there was the fear you felt as someone infected, you were a threat, and so often were abandoned to deal with it in whatever ways you could.   I admit there were a lot of us running from hospital to homes to medical appointments in order to care for and help our lives.  We jumped in and did what we could, but I don’t think any of us think it was enough. 

  I remember sitting in a little room inside the “testing facility” attached to the Los Angeles Gay and Lesbian Center.  There were two doors.  One was the one that was attached to the waiting room that you went into.  The other was where the staff came through.  It was well known that if you were being told you were positive, two people came through that door, if you were negative, one.   I think those people needed the support to tell someone they were lucky that now “it” won’t kill you for a year or so.  I knew my results before the two men walked in the room.  I had been an activist, and caretaker, and voracious reader of any and all news and studies from as far back as they were available.  I knew what the signs and symptoms were, and by now, all signs pointed to death.  I had been through this before.  I had sat in this exact chair supporting friends as their own pairs of men walked through the door.  Many of them were dead by this point, all of them are dead now. I still had to hear them say it.  I needed to put it into the air.  I still had to sit there, glued to this spot as my mind panicked, and my heart simultaneously wanted to stop beating and couldn’t stop racing.  I don’t remember all that they said; I only remember the absolute collapse of any sense of safety or security I had cobbled together in my 24 years of life.   I kept wondering why they were still talking when I couldn’t understand what they were saying.  Why wouldn’t they speak English?  Oh maybe they were, I just couldn’t recall how to hear in English.  About a year before my diagnosis I had stopped counting the dead at 650 men.  I didn’t want to count anymore.  The number was no longer soothing in the ways it had been.  Now I was going to be one of the numbers for someone else.  Was anyone counting for me?  I think I was hoping that by not counting it wouldn’t go higher.  It did.  And now, I was on that same journey as those men.  No longer a caretaking observer to the suffering, I was one of “them”.  I thought I knew what it would be like, after all I had been a witness so many times before.  But there is something totally different when it’s you in that chair.  When your blood betrays you, and you hear them tell you to “wrap up what you can, you don’t know what you can do when or how long until  things get worse.”  Things only got worse.  Everyone knew there was no better from here.  When was it gonna be? What would get me?  Would it be painful?  The questions that are only allowed to creep in late at night when your defenses are low began to be my problem, and not just something I heard about.  Each time I was helping another friend care for himself or his lover or his other friend; each time I saw that ragged face on the street and saw how my face was becoming that face; each time I woke up in a cold sweat; I knew the only choice was to wait.

I did therapy, I did grief groups, support groups, healing groups, and group hugs.  All of the things that we are “suppose” to do to help us “get over” our grief.  The problem was that my friends were still dying. I was still dying.   We still had to Act-up.  We still had to get someone to pay attention to these disposable gay men.  We needed treatments, and research and money.  There were sick friends to tend to and then bury.   I still spent more time in funerals, memorials and celebrations of life than anywhere else.  The grief and loss and fear became a rock tied around my neck that I dragged everywhere.  It all happened so fast there wasn’t really time to deal with the rock or try to find a way to make it easier to carry. 

Then, in 1994, the love of my life, the man I loved more than breath, died in my arms.  We had agreed that I would wait for the count of 20 before I would go get anyone.  I sat in bed silently crying, wanting to run screaming from that hospital room for anyone to help me.  But I lay there, counting. I lay there thinking of how this isn’t how it was supposed to happen.  I counted to 20 and then I walked out the door. In the hallway I collapsed, two nurses came, one to tend to Rudi and one to tend to me.  I have glimpses of the next few weeks, but no real memories.  It’s like a dream but underwater.  Lying on the floor of my living room, wrapped in a blanket that still smelled like him.  Friends came and cooked, and threw away the untouched meals.  They would sit in the chair and on the couch and talk amongst themselves, or try to talk to me.  I couldn’t form a thought.  After a week or two, only one friend was still coming.  Everyone had to move on, or take care of someone else. My friend would come every evening, bring food, and lay on the floor with me.  Not saying anything, just holding me tightly as I cried or screamed or rocked.  This man didn’t offer me comfort or try to fix anything; he was just a simple presence.  He wasn’t afraid of the depth of my grief, and he joined me there.  This allowed me to fully express and experience what still feels like the surgical removal of a part of me that happened without anesthesia.  There is still a piece missing.  I can’t point to which one, but it’s gone, and I have stopped wondering if it will grow back. 

At some point I realized that Rudi was the end of my second set of first circle friends.  Two weeks before, my best friend Jim died on the same day my husband told me he couldn’t fight anymore and that it was time to stop “fighting”.  As I sat in bed with this man who I had spent so long building a life with, and hearing him say, he couldn’t fight anymore all I could think was how much I couldn’t fight anymore.   In my mind flashed the images of all those men I had cried for and with; all the men I had watched take their last breath.  I couldn’t remember how to breathe myself anymore.  Luckily the body knows how to breathe.  It’s why we use breath in meditation; it doesn’t require our consent.  The body breathes of its own accord.   Even when we think we don’t want it to, or that we can’t.

A few months after Rudi and Jim died,  I did the only thing I could do.  I ran away to San Francisco.  I had to get away from the ghosts, and the car that drove to the hospital each night after work, instead of directly home.  I came to San Francisco to hide out, to heal to find someway to get over this mountain of grief and loss. I had to figure out how to live again.  By this point we had the miraculous cocktail.  AIDS had finally become manageable, and it only cost me everything to get there.  About six months into my being here, a friend and I were talking over coffee and somehow came to the idea that the answer to both of our current states of mind was spiritual, not mental, and not physical.  I had been involved in 12-step programs for about 8 years at this point, and had heard this over and over again, but for some reason this felt like a new revelation to me.  We decided that this was San Francisco after all.  There is a church, ashram, meditation group, society of spiritual this or that and/or temple on every corner.  We would just go to all of them until we found one that had our solution.  We called it the Mall of Religion Tour, and were pretty serious about it despite our irreverent humor.  One of the places we went was a Buddhist Sitting Group that met on Tuesday nights on Dolores and 19th.  A basement that wasn’t actually tall enough for people, functioned as a meditation room and this guy would give talks after 20 minutes of silent sitting.  I don’t recall anything else he actually said, but I do know he stated pretty matter-of-factly “Nothing was broken”.  The cussing and anger that welled up in me at that statement was surprising even to me.  I decided I needed to come back till I understood this guys argument and then I could really tell him off. 

About 6 months later, my friend George took me to San Francisco Zen Center to introduce me to Zen.  I enjoyed Vipassana, as it felt safe, and in the version presented to me was stripped of a lot of the “baggage” I had left over from the religious training of my youth.  There weren’t a lot of bells and whistles in the Buddhism I was introduced to and had begun to practice on Dolores Street.  There was no bowing, no incense and nothing that pushed that childhood religious training button.  So when I got to Zen Center, and an older man in funny robes came in after we meditated to offer incense, I was a bit taken aback.   After meditation, there was a chanting, bowing and bell ringing service that pushed me over the edge.  George and I had planned to have dinner at Zen Center when we were done, but I told him I couldn’t do it, and that I wouldn’t ever be coming back to Zen Center.  “I don’t want any of this extra crap with my dharma.”   Fast Forward to 6 years later, when I am ordained as a Zen Priest, and I remember my now dead friend George and can only imagine the giggle he is having wherever he is about this.

I think I do understand what that original dharma teacher was saying about nothing being broken; but not in a logical, deconstruct his argument kind of way.  It is more understanding beyond knowing, a visceral, ease in my heart way of looking at things.  There actually is nothing broken here.  My reactions and life are completely normal responses to the causes and conditions that have come before.  Grief comes from loss, and extreme grief comes from extreme loss.  The feelings that I felt, and the pain and suffering are a part of this life I have.  It may not be the life I wanted, or thought I would have, but it is what it is.  Suzuki Roshi, the founder of San Francisco Zen Center said, “Our practice is to accept things as it is, and help it to be its best.”  So I accept that this life is a transformative life.  Instead of trying to fix this or get over that, I simply needed to stop and turn around and meet them.  There is an old Buddhist story about a monk who goes up to a cave to meditate.  As soon as he sits down, demons begin to attack him from all sides.  He does everything he can to dispel and eliminate the demons.  After two or three days of struggle he goes down the mountain to his teacher and tells the teacher about it.  The teacher instructs the monk to go back to the cave, and when the demons come to feed them cake.  The monk despite certainty that his teacher is crazy goes to the cave and does as he is instructed.  The demons sit down to the cake, and vanish.   This is how it is with strong emotions.  The more I struggled to subdue them, the more they would overpower me.  As I began to find out through practice, turning towards them, and allowing them full attention, they would stay right sized, I would stay right sized, and they would pass away into some other experience.  This is the Buddha way.  The great Zen master Joshu said, “This very mind is Buddha”.  Finding a way to let the grieving mind, the sad mind, the despondent mind, the lonely mind to be Buddha has been and continues to be my practice; to not wait to find some settled or peaceful mind and then seeing Buddha there.  Instead, amidst the demons and devils, amidst the trauma and upheaval, there in the middle of the holocaust and grief to see that nothing is broken, and that this is Buddha.


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