Give to the Living (World AIDS Day)

December 1, 2010 by libbabray

On World AIDS Day, I usually repost this blog I wrote in 2010 about losing both my father and my good friend, Norbert, to AIDS. This year, I’d also suggest that you read David Levithan’s beautiful TWO BOYS KISSING and watch the excellent documentary, HOW TO SURVIVE A PLAGUE. And, as always, I urge you to keep fighting for equal rights for all human beings. 

One of the earliest memories I have of my dad is of him in his sober ministerial robes on Sunday mornings at Woodlawn Presbyterian Church in Corpus Christi, Texas. I wasn’t real keen on attending services as a kid. It seemed like a lot of fuss about some boring abstract idea as well as an interminable amount of time spent sitting on a hard pew while wearing scratchy dresses and pinching Mary Janes. My usually jovial father was so serious up at the pulpit that he seemed like a completely different person. So doubtful was I about this Sunday split personality that I even asked my mother, “Is Daddy always God or just on Sundays?”

As soon as the benediction had been pronounced, I would dash down the aisle and make a beeline for my dad who was positioned at the front door to greet parishioners on their way out. I’d dive under his robes and hide there, refusing to greet people, insisting that I was a ghost and, therefore, could not be seen or spoken to by anyone. (You can feel sympathy for my parents; the task of civilizing me was an enormous one that stretched over many years. There are some who would say this task was never quite accomplished.) I think that I needed to make sure that my father was in there somewhere in the folds of that “preacher costume.” I needed the comfort of him near.

He was a comforting presence. I often said that when he hugged you, you stayed hugged. Quick with a joke or a witty remark, he was outgoing and outspoken while also courtly and very much the southern gentleman. He was a staunch feminist who nevertheless insisted on walking on the outside on the street “to protect the ladies from the horses.” Sometimes he was absent-minded and excruciatingly rambly and vague, and my brother and I would roll our eyes and shout, “A verb, Senator! We need a verb,” because we were horrible children. He loved animals and could not resist the foster care urgings of his friend, Fern, whom he called, “The Puppy Pusher.” He was also a complex, secretive man who lived a double life. There was always the sense that he was holding back something in order to protect the lie he felt forced to maintain. Don’t ask, don’t tell could have been his motto.

It was on a cold morning in January, when I was fourteen, that my father, weary of at least part of the pantomime play, finally told his family the truth: He was a gay man and he and my mother had agreed to divorce. He was out to us, but he had to remain closeted in the outside world due in large part to his position within the church as editor of The Presbyterian newspaper for the Synod of the Southwest. We were entrusted with keeping his secret. From that moment on, I understood what it meant to live a double life. I understood the toll that secrecy, silence, and self-loathing can take. In this way, it’s ironic that my father’s job was in the field of journalism when he constantly buried the lede. I think he unconsciously trained me to be a writer, to feel compelled to dig up those buried truths, to bring them kicking and screaming into the light.

The first time I really remember registering AIDS was when Rock Hudson died. This was huge news then, in 1985. I worried about my dad. “You’re being careful, right?” I didn’t ask it expecting to get a response. That was too scary. It was a declarative—“Be careful”—wrapped in a rhetorical question. My dad was lovely, but he wasn’t great at taking care of himself. He had a self-destructive streak twined, I believe, to his self-loathing about being gay. Today, there are celebrity campaigns for AIDS awareness, merchandise to support the cause, splashy photo spreads. But back then, it was a very different story. It’s hard to explain the level of fear those four letters elicited. The initial federal response to AIDS was lackluster and reflected a bias. Acquired Immunodeficiency Syndrome, as it was being called, was a “gay cancer,” and the societal response seemed to be, “Serves ‘em right.” It was not a pretty moment in America.

For a time in Austin, after college graduation when I hadn’t quite figured out what I was doing with my life, I lived with one of my best friends, Ed, and his partner, Norbert. We did theatre together, forming an arts collective called SOMA, Self-Ordained Ministers of Art. It was the eighties; what can I say? Ed directed all of my plays; Norbert did the graphic design for the posters. On Sunday nights, we ate pot roast and watched “Star Trek: The Next Generation.” They were Lakers fans and indoctrinated me in the ways of NBA playoffs. In the fall, we hosted the Third Annual Hat Party. It was always the “third annual” and you had to wear the most ridiculous hat you could find or make. We had a Barbie Doll shrine to Nancy Sinatra. On Saturday mornings, we put on Diana Ross & the Supremes and cleaned the house according to our assigned tasks. We ate cheap Tex Mex and sat in the backyard under the carport to drink sweet tea and catch a breeze. Whenever the landlord dropped by, we had to pretend that I was Ed’s girlfriend. Yes, that old charade. I remember it, actually, as one of the happiest summers of my life.

The spring before I left for New York City, Norbert came down with what everyone thought was mono. “I don’t feel well,” he said. “Well, you have mono,” I said. “No,” he said a little anxiously. “I don’t feel…right.” Denial is an amazing coping mechanism, because of course the word AIDS crow-barred its way into my subconscious like a burglar intent on robbing my peace of mind. But I bought a new lock and went about my business. Ed and I started work on my new play, an AIDS piece, presciently, called, “Requiem A-Go-Go,” and we waited for Norbert to get better. He did not. By August, when my bags were packed for New York, Ed told me they’d gotten the diagnosis: AIDS.

This was terrifying. In 1990, AIDS was always a death sentence. Ed would send me notes from Austin, terrible notes, about Norbert’s rollercoaster deterioration. The last time I saw him, he was lying on the couch under an afghan, pale and tired and scared. “Pray for me,” he said. I said I would. I flew back to New York. By October 1992, he was gone. That summer, I took the train to Baltimore to see my father and we went to view the NAMES project AIDS quilt. In the shadow of an old church not too dissimilar to the church where I played hide-and-seek in my father’s ministerial robes, we walked around huge swaths of colorful cloth, squares bearing the names and dates of people who had died, some of them unbearably young like Norbert. “So unfair,” my father said. I didn’t realize the full weight of his statement then.

My father often sent me clippings—articles I might find interesting, Shoe cartoons, coupons to ease my way up there in the frozen north of NYC, ribald jokes. Usually, these were accompanied by the briefest of notes. So when I opened that multi-page letter in February 1995, the one that began, “Sweetheart…” I had a sinking feeling in my stomach, some premonition that all was not well. Part of me wanted to seal the letter back up. He admitted that he was HIV positive. That was a lie. He had been HIV positive for six years and kept it secret. Keeping things secret, of course, was one of his talents, a skill foisted upon him by a judging world.

What he had was full-blown AIDS, a fact I would discover in September of that year when I received a call from my brother, Stuart, out in Colorado where my father had gone to spend his retirement so he could be closer to his grandchildren. “Daddy’s in the hospital. They don’t think he’ll make it through the weekend. You need to get on a plane.” Reeling, I made the flight from New York to Denver. On the drive to Ft. Collins, my brother and I talked about music and Cowboys football, how different Colorado was from Texas, my niece and nephew. Denial is a family trait. Finally, he said, “You need to be prepared. He looks bad. Not like you remember him.” That was an understatement. My dad had Cryptosporidium, what was called “the wasting disease.” My formerly robust father had withered down to about ninety-seven pounds. I didn’t recognize him at first, and I had to stifle a gasp. When I hugged him, I could feel the bones of his spine like rosary beads. My father rebounded after his potassium came back up, something we soon discovered was part of the cruel course of the disease, the up-and-down nature of it all. For nearly three months, I stayed in Colorado, taking a leave of absence from my job to be with him.

There were things my brother and I learned: how to put together an IV of Sandostatin. What to do if he couldn’t hold down the Ensure drinks we made for him. What to put in the red plastic biohazard containers that dotted the house like some kind of dystopian home decor. When to call the doctor. We met with his hospice worker, Dorothy (oh, the irony!), who was lovely and informative and a godsend. For a week, we went about our business, and this became the new normal. I began to think we would beat this thing.

One night, we even had hamburgers at my brother’s house. It was good to watch my father, who had been a third-helpings man, eat half a burger. We were encouraged. Hopeful. On the drive back to his apartment, my father began to feel ill. Suddenly, he was vomiting violently as he tried to keep the swerving car on the road. In a panic, I tried to take the wheel. “Don’t!” My father shouted. “Don’t touch it!” And it hit me: The vomit. I had no gloves. He was afraid for me. We were on a dark road facing oncoming traffic, snow lightly falling, turning the pavement slick, and my father was at the wheel and sick. The most natural thing in the world was for me to take over. And I couldn’t. We managed to steer the car onto the shoulder and get him outside. The air was cold. My breath made small bursts of fog as I said, over and over, “It’s okay; it’s okay,” unsure of who, exactly, I was comforting. Later, when I’d helped to clean him up and put him to bed, I pulled on a pair of rubber gloves, grabbed a bucket of bleach water, a rag, paper towels and a trash bag and went out to the parking lot to clean my dad’s Toyota. The early October snow was still falling. It looked pretty in the lights from the apartment complex. I sobbed angrily while I scrubbed the mats and upholstery with bleach and dumped everything into the trash bag. I started to put the bag in the dumpster, then thought better of it. Unsure about what to do with it, I stood in the parking lot, my arms out like some misplaced, directionless scarecrow, then double-bagged it and tossed it in.

After another hospital stay, we had to move my father into the nursing home later that week. It was a cheerless place, and I fought it by decorating his room for each holiday, until finally I brought in a small tree—a real Charlie Brown mess of a thing—and put up a few ornaments and Christmas cards. On December 10th, just as a I was attending a gay men’s chorale concert in honor of him, my father, who had been in and out of consciousness for two days, turned to my brother who had just arrived, gave a small smile, said one last word, “Goodbye,” and died. The next year, they came out with the retrovirals that changed the game.

Before my father died, he stage-directed his memorial service. Really, you had to know how into organizational systems my dad was to appreciate this. This was a man who kept his take-out menus in a folder in his file cabinet under M for menus. The menus were in alphabetical order. When my brother and I had the task of taking his house apart, we found that folder and laughed till we cried. “Don’t mess them up—he’ll come back to haunt us!” Trust me, you need a laugh at such times. The funny thing was, for all his attention to detail, the man was never on time. The only time I ever missed a plane was a time I forgot to lie to my dad about the departure time.

Anyway, Dad was insistent on three things for his service: 1) He picked the music (We are real music dictators in my family) 2) It should be a celebration, not a funeral, and 3) No flowers. “What the hell would I do with a bunch of flowers? I’ll be dead. Give to the living.”

Give to the living. It’s a good mantra. I’m not big on memorializing as a general rule. What I prefer, the way in which I choose to honor both my father and my friend Norbert on World AIDS day and throughout the y ear, is by continuing to speak about and advocate for equal rights for ALL Americans. This has been a tough year to be gay in a lot of ways. The teen bullying crisis has been particularly hard to watch. I know if my dad were alive, he would be writing editorials about it. I know how both he and Norbert had to hide, and that isn’t good for anybody. That doesn’t make society stronger; it only makes it sicker, and I’ve had enough sickness to last me a lifetime, frankly.

I keep thinking back to that line I loved so much in “Milk,” where Harvey Milk says to a gay teen in crisis, “There is nothing wrong with you.” There’s nothing wrong with you. Remember that.

So today, I raise my glass and say, hey Norbert—I’ve got Diana Ross on the iPod. (I’ll explain iPods later, Norb.) Dad, wish you were here; you’d really get a kick out of my kid. And to everyone else out there, especially if you are a gay teen trying to find your way in an often hostile world, you are all right. In fact, you are fucking fabulous. There is nothing wrong with you. Silence = death, as ACT UP used to say. Make some noise. Put on the biggest hat you can find, and don’t let anyone tell you you’re not welcome at the party.

On this day, let’s remember to keep fighting and to honor the dead who can no longer raise their voices by refusing to silence our own.

9 thoughts on “Give to the Living (World AIDS Day)

  1. Thank you for sharing your story, Libba. I recently lost my dad to lung cancer. Although the circumstances were different, the emotions were the same. I’m offering my condolences to you on the loss of your father and your friend because even though so much time has gone by, I know how the pain lingers. I’m also going to share your post with my school’s GSA club. You’ve written beautiful words for an excellent cause!

  2. Pingback: Weekly roundup of YA, children’s lit, and other book-related links | Cite Something!

  3. Pingback: What I’m Reading (weekly) | Wearing 500 Hats

  4. Pingback: On Our Radar: Lois Lowry, Intro to Black Feminism, and More | The Journal

  5. A beautiful and truly awesome story. I’ve read all your books and it is amazing to be able to know the woman behind the books. Your story is amazing and you very strong, going through difficult things in my own life, I feel that I relate to you. Although I will never know what you went through. I have many gay friends including one that struggles with his parents everyday. It breaks my heart when he talks about how he is sent to church camps to be “cured”. Thanks for saying the words that few say. Thank you for your wonderful perspective on life. Thank you for your books and lastly, thank you for this wonderful story.
    Thank you

    Truly Yours,

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )


Connecting to %s