November 30, 2017 at 6:27 am PST | by Gary Barton
Losing a lover to AIDS

GARY BARTON was an actor and former senior vice president of production at Walt Disney Co. In 1992, along with his partner Rob Hershman and Congresswoman Maxine Waters, he won the Leadership Award from AIDS ACTION in Washington. (Photo from Barton’s Facebook page)

That last month, I could look only in his eyes, for that is where he was. His face was covered with raw open sores. His gray translucent skin was stretched tautly from bone to bone. He had become a body with which I had no history.

When I got scared, I held him in my arms and stared into his eyes. They were clear and beautiful and familiar. That is where we connected now.

That last month I remember as snapshots of black and gray. Even the blood Rob bled, in my memory, lacks color. Time is distorted and that month seems much longer than a month is. I can still feel myself pushing away certain memories.

It has been years since Rob died and the black flashes stay a little longer now, and very slowly, like a photograph coming up in a darkroom tray, I begin to see the memory develop and fix. When I met Rob, he was beginning to lose weight. I watched him chart his unexplained fevers daily.

A friend commented that he thought I was courageous to get involved with someone who was beginning to get sick. Courage had nothing to do with it. I knew after spending a few weeks with Rob, that this was the man I would allow myself to love and with more difficulty, allow to love me.

I committed to make the journey of my life with him, not knowing where it would lead. It was quite simply, the wisest decision I ever made.

My years with Rob are how I measure time now. Everything else comes either before or after.

The differences between Rob and me were considerable. Rob was very well read and graduated magna cum laude from Harvard. I barely made it through high school. Rob was compulsive about neatness and order. I would leave my clothes in a pile where I removed them. I had been living on my own since I was 17 and had developed street smarts that Rob never did.

In fact, he never stopped being naive. But instead of allowing these differences to become a wedge, we learned from each other because of them.

Three years before he died, Rob told me he needed to pursue a spiritual path to deal with what he knew was in store for him. He decided, having been born a Jew, that he would study the Torah. Up until then, he had no particular religious connection with Judaism, but like many Jews, he had a strong cultural bond.

In typical fashion, he excelled in his studies and for this, in that last month, the rabbis with whom he was studying, honored him in a ceremony naming him a maggid. Maggid in Hebrew means: a teacher or storyteller.

It is an honor that is rarely bestowed to a layperson and Rob was indeed honored. He had won many awards including two Emmys and a Peabody award for journalism but this was the acknowledgement of which he was most proud. At that ceremony, our family and friends listened as Rob spoke of how generations ago a person’s character seemed to be so important, and that today no one talks about character. Rob had character. He was the most decent person I have ever known.

That last month, we had another ceremony at our home. For a long time Rob had wanted some formal acknowledgement of our love. I’d had no interest in emulating a tradition that had never welcomed me. But one night, that last month, I looked at Rob’s body in the bed and decided I wanted to marry him. He was so riddled with pain that there was a moan coming from him that seemed disconnected, as if his body was screaming but not his soul. He once described the pain as a beehive in his brain with thousands of killer bees swarming and stinging him from within.

I wanted to give him this gift. And so, before our closest friends, family, our dogs and our doctors, we stood on our deck and celebrated our love for each other. Not a commitment ceremony really, for the commitment had been made many years before. Rob was frail and had trouble standing that Sunday, and yet his face radiated enormous power and strength. His eyes were present and filled with tears of joy.

He died exactly one month to the day with the gold band on his bony finger that matched the one on mine. He was 41.

That last month seems nonlinear. The events are jumbled up. Extraordinary moments of profound joy mix with unbearably painful ones. I didn’t only lose Rob that last month. I also said goodbye to Paul Monette, my beloved friend and fellow warrior, who died with his icy, yellow hand sandwiched between mine.

For many seasons past, Paul and I talked almost daily, sharing our anger and comparing our t-cells. For 10 years we ran neck and neck, only in this race the winner comes in last. There was no room for anything or anyone that was not directly connected to Rob’s care. Even mourning Paul’s death had to wait.

As our world became narrower, Rob’s world of learning, teaching, and touching people seemed to expand. I often think of him sitting at the dining room table with our Guatemalan housekeeper Dani. Her husband had forbid her to go to school to improve her English. Rob offered to teach her, which he did until a week before he died, his patience vying with his pain.

One of the things I so admired in Rob was his total lack of classism. I came home one day and overheard Rob on the telephone explaining to the person on the other end how in American English it was common for certain words to have an opposite definition such as cool and hot, and yet in certain circumstances, they mean the same thing.

“People could say that something was very cool as in ‘that song is very cool’ or “that song is really hot” and mean the same thing. I assumed that Rob was talking to Dani continuing one of his lessons. When he got off the phone I said, “how is Dani?” He said ,“oh, that was not Dani, it was Prince Charles.” I sadly thought Rob’s previous dementia had returned and as upsetting that was to me, I just let it go.

The next day Rob mentioned how nice it was for Prince Charles to call. With further inquiry I discovered that Rob actually had been talking to the Prince. Rob had done a story about architecture when producing news for CBS. He had interviewed Prince Charles at Highgrove House, his country estate. They had kept up a correspondence and a friendship and when Charles had called Rob at CBS, he was informed of Rob’s condition and called him to wish him well.

I remember Rob used to laugh when he told the story about being left alone in a room at Highgrove, which evidently had hundreds of Faberge eggs just sitting on tables with no security. I thought it was odd that Rob did not pick one up and put it in his pocket but Rob was much too ethical to do that. I viewed it more like taking an ashtray from a hotel. What I thought was cool (and hot) was that Rob did not differentiate how he spoke whether it was to a housekeeper or to British royalty. That was just part of who Rob was. The fact that Rob never made a big deal about his friendship with Prince Charles from before he and I met, was just one more example of his genuine modesty and humbleness.

That last month, Rob was diagnosed with a fungal infection that was literally eating through his sinuses to the bones surrounding his brain. His physical pain was extraordinary and only slightly helped by morphine.

Morphine frightened both of us. It frightened Rob because he so hated the feeling of being disconnected to the very life at which he was clutching and marveling. His inability to study and meditate made the spiritual pain of being on the drug as bad as the physical pain of not. It frightened me because it dulled the bright life force that shone in his eyes.

Rob began losing his vision that last month before he died. He could not see out but I could see in.

That last month I took a photo of Rob in the desert. I look at it often. He is standing next to an also decrepit cactus, both looking up at the sky. Rob is beaming with unlimited joy and the desert bright, washed out light seems to be originating from within him rather than from the sun. Most of the time when I look at the picture, my tears blur my vision, but not my memory of his eyes. Still, that is where he is.

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