Thursday, December 01, 2011

World AIDS Day, 2011: Year 26 of Infection

I awoke with one eye closed and buried in my pillow, but the other, wide open, stared into the bright sunlight that was streaming in through the closed blinds of my bedroom window. The sunlight shone brightly across the head and between the erect ears of my curled up schnauzer buddy, Goose. He feigned sleep and did not move, but his ears betrayed his attention to detail and his vigil for my awakening. I did not wish to move because it would cause him to stir. There I continued to lie for a few minutes, coming to my senses from the sleep and dreams that had had me clouded up a moment or two before.

“What day is this? Thurs…oh…World AIDS Day.”

I had let myself forget while asleep, but the day’s significance came back to me in a rush.

“Oh dear. Most days of the year, I can handle taking my pills and shooting up my insulin and eating and sleeping and buying groceries and carrying on with my life. When World AIDS Day rolls around, though, it can hit me without warning, like it just did yet again. The thing is, no one wants to hear about it. There is no one with whom I can confide my true feelings of loss and fear and deep, deep, dark forbidden sadness for the friends I have lost to death and for those whom I have lost to life and the sense of that betrayal."

I rolled over in my bed to keep from disturbing Goose and tried to bury my thoughts in sleep again. On my other side, the sunlight wasn’t nearly so bright, but there was Greta, Goose’s “wife” and the mother of his children. She was curled up against me, seeking warmth like some kind of black, heat-seeking schnauzer-missile with bad breath and few remaining teeth. Thoughts continued to run through my head, uncontrolled, like children left to run through a household where the adults, consumed by their grief, are focused on tending to the details of a wake.

“It is no longer so bad to have to swallow 31 pills a day. I no longer worry about trying to hide any of them when eating out. If someone wonders why I am taking a side-dish of capsules and tablets, it is their issue, not mine. I also have learned to test my blood sugar five times a day and inject insulin six times a day to try to get my metabolism back under control from the very pills that have saved my life. I have even learned to sleep when tired, to nurse my pain when it is bad and to get to the doctor when I need to do so. On most days, I can take all of that shit. What I can’t seem to face, though, is these yearly World AIDS Days where everyone seems to look at the disease like a holiday--one where it is time to wear a reminder of the disease and to spend a few minutes thinking about those poor, poor people in Africa who are suffering."

"Don’t they remember what we lived through in the 1980s? Don’t they remember that this disease is real and still here and doing quite well, thank-you-very-much? It is hiding behind the stigma and shame in their own homes, schools, churches and gay bars, here, in America. I am sure they will find my thoughts to be a form of heresy for not being grateful that they have put aside a whole day to think about my dead friends and me. I know that they think themselves noble. They sit on committees and dress up in their silk shirts and tuxedos so that they can have a chance to throw a gala to assuage their guilt for not seeing us the rest of the year. The will say things like ‘You can’t get AIDS from a hug!”, yet when it comes time to share intimacy with someone who is HIV positive, they flee into the anonymity of their rejection and their projected shame and fear. I can't take that. I can't tolerate the artifice of my culture. But the worst, the absolute worst, is the knowledge that but for me and the other few real friends whose lives were truly touched, my departed friends are slowly being forgotten. Hell, I am even having trouble remembering all of their names at any given moment. When I am gone, who will remember that I was even here? Who will remember the impact that Kenny, and Donald and Chuck and Ralph and François and what’s his name had on my fucking life and how important their death was to me.”

“For fuck’s sake, who decided that public health should be a function of greed and profit? We need a cure for this disease and we need that cure to be motivated by ethics and not the stockholder’s meeting. I am the 99%, but I am also in the minority. I am the 34 million worldwide who are infected with HIV. I line the pockets of those whose portfolios contain pharmaceutical stocks. My HIV meds alone cost in excess of $3700 per MONTH and we have people who are dying because they cannot get access to that kind of money or who lack insurance coverage. Life is worth so much less than profit and this is the 21st Century! You wonder why I state with passion that capitalism isn’t working for many of us? World AIDS Day has become the last refuge for my anger and sadness, damn it all!"

I awoke with it, like a fever that had set in overnight. As I lay in my bed, my eyes leaked and my ears filled with salty tears and my sobs became uncontrollable until Greta solemnly arose and gave me one of her patented “sweet Greta hugs”, where she literally wraps her front legs around my neck and drives her head into mine with great passion. Her hugs feel like they are filled with more compassion than the whole of humanity can muster for itself, all wrapped up in one little 25 pound dog.

I soaked up her love, knowing that it is likely the most I can expect from this day when my disease sets me apart more than any other day of the year. It is the one day a year that I allow myself to be really pissed off and to express my sadness. It is when I allow myself to feel the absence…the hole that is left behind…that intangible part of us that others bring to each of us, that which moves us to laughter, to joy, to tears and to grief. It is when I focus on how much of that I am missing from each of my departed friends. This is the day when my sadness maxes out and my anger overflows.

I have awakened far earlier than I had hoped I would today. I had hoped to hide in my dreams for a few hours more before these tears would awaken me and wash the sleep from my eyes. I have alarmed my dogs. I felt that I may as well get up and get going, so I slowly crawled from the covers of my bed and ambled into my bathroom to wash my face. I splashed water into my eyes and tried to clear my nose. When I lifted my head, I saw into the mirror that was before me, my red eyes looking back.

“There is little in the way of self-indulgence quite like crying into a mirror, but I think I will let it be my gift to myself this morning.”

I cried for a full minute, looking at myself in the mirror, before abruptly pulling myself up short.

"This is conduct unbecoming of a soldier in this war. Time to move on for another year at least. Time to bury my dead again. Time to start this new World AIDS Day and face it with a smile so that people aren’t frightened by what could happen to them. Time to dress and put on my red ribbon. Time to wear it with pride. Time to live again."

In memory of:

Ralph, North Carolina
Francois, Paris, France
Daniel, Paris, France
Jorge, Cuba and Washington, DC
Thierry, Paris, France
Chuck, Alberta, Canada
Dip, Washington, DC
Charlie, North Carolina
Thomas, North Carolina
Kenny, North Carolina
Gene, Alberta, Canada
Johnny, Tennessee
Jamie, North Carolina
Hunter, Georgia
Jim, Chicago, IL and NC
Joel, California

In honor of:

All the friends who continue to live with HIV around the world.

Wednesday, December 01, 2010

Nuit Blanche

"Sail ho, heave ho, come on let go, your time on earth is over.
You have done well. Its time to rest. I’m talking to your soul.
Did you ever think it’d be like this?
Do you ever think we’ll meet again?
How will I ever know it’s you?
Maybe will it be the love that I’ll feel…
when I look into a stranger’s eyes?
when I look into a…stranger’s…eyes…
oh….you’re sailing away
I keep my vigil on this chair
Is this my lover here?
Is this my brother here?
Is this my baby?
Is this me lying here?"
from "The Vigil (the sea)" by Jane Siberry

I have been challenged for years to try to express what it has meant to me to have outlived so many wonderful souls close to me who died of AIDS when I, too, am infected with HIV. I have tried to express my feelings in poetry. I have visited classes of young people and explained that if they look to their friends in the chairs that surround them and imagine them gone that they might get a hint of an idea of what it was like. I have attempted to write it out in prose, baring my soul and exposing my vulnerability as a pariah in a blog that few people read. Tonight, I lay in my bed, wakeful, thinking of how it is once again World AIDS Day and how I have neither learned how to convey the significance of these losses nor have I learned to move on from them.

I spent the earlier part of the evening holding onto a beautiful man in post-coital embrace. He and I are relative strangers in reality, but we had quickly developed a connection that is difficult to explain without delving into themes of power, control and release of the weight of the world. As we lay in each others' arms, he said to me that "it is about time that [I] started to live again." I was amazed how quickly he had zeroed in on my core issue. As he left my home for his, and as his scent still wafted through my beard, I went to bed to seek sleep. I knew that I had to get to sleep quickly because I was to join a dear friend in the morning at a World AIDS Day seminar at a local university.

Sleep did not come. I felt compelled to play the disc "When I Was A Boy" by Jane Siberry and as the music played, I wept. At various points in the playing of the disc, I thought of my friends and how they have been reduced to fragments of memories that come back to me like wisps of smoke. Ralph was there to remind me that "love is all there is." Donald pulled me close and wrapped us both in his blanket as we shared his bed in Washington, DC. Serge called me from Brussels to tell me that Daniel had left us and that he would have wanted me to know. François smiled at me in the apartment in the 14th Arrondissement of Paris as I gave him the North Carolina Olympic Festival t-shirt off my back. Thierry told me how he refused to take ddI but that his cat loved to eat the pills from a dish on his coffee table. Dip and Julia and Amy sang so soulfully at Mr. Henry's in Adams Morgan and entertained me in my silent desperation on New Year's Eve as I wondered if it would be my last. Charlie, one of the most beautiful men I have ever seen, hypothetically joked about dropping the soap in a communal shower and hurriedly volunteering to pick it up for the beautiful men under the flow of water. Thomas was the sweetest man I may have ever met and his gentle nature made me long to know his soul. Randy was so quiet that I never did know him well. Chuck just wanted to get on with dying so that he and Gene could be reunited in Heaven. Jim's unkempt beard curled around his oxygen tubes and we once laughed about how you could hear the pumping of his air speed up when he watched porn. Kenny, oh dear friend--he would give you the air from his lungs but grew angry when his death drew near and he pulled away from me into seclusion. Jamie was bitter, bless his heart. Jorge fled Cuba as a Marielito and must have thought this new home offered him a life of promise as his initial happiness turned to dread of being seen in public with Kaposi's Sarcoma lesions on his face. Joel lived next to a loaded lemon tree in a one-bedroom duplex high above the Pacific Ocean in Southern California, where he could sit on his couch and watch the sun dip below the horizon. Johnny was the first person I knew to have a cyber memorial where his online friends logged in and shared stories of his life after he had moved on.

It is painful to reduce these wonderful people to a single thought, but they each crossed my mind as I listened to Jane Siberry's masterful poetry and as I felt the melding of her work with my own emotions. Outside, a powerful storm lashed my home with rain and hail, as if my internal emotional storm had been transformed into an exterior threat à la "Forbidden Planet." Just as the rain ebbed and poured, my weeping waned temporarily only to return in huge sobs with tears that ran laterally down my face into my ears. I waited for the sound of a tornado, fearing that my extreme angst would destroy me and all that I know.

It finally occurred to me that there is no way to convey these losses to anyone. I can try to explain them and have done my best to do so. Some of you will understand portions. Some of you will remember some of these people. None of you will remember them all nor will anyone else remember all of what I remember about them. It reminded me that I could play Jane Siberry's work to a roomful of people and no two of us would get the same emotional tug from the experience that any one of us would. I could just as well ask you to understand the nature of my relationship with the man whose body I held tonight in an effort to forget the transience of our existence in this life. Unless you are one of us, it is unlikely that you will get it and some of you will hold us in judgment for what we took from life just to make it from one day to the next.

Outside the winds continue to whip the trees around and my chimes are like chapel bells, pealing for the rising sun. My nightlong sorrow even amazes me. I hope none of you ever have to feel this kind of pain, but as I have said before, it is in the telling of the story that the healing begins.

"the never idle pressing
silent confessing
the endless versions of the lonely heart
when we love like we love
and we want like we want
and then we cry like a child
never like this
never like this
never like this"
from "Sweet Incarnadine" by Jane Siberry.


Monday, November 29, 2010

World AIDS Day Remembrance, 2010

I am writing a couple of days early this year to remind you of International AIDS Awareness Day, also known as World AIDS Day, on Wednesday, December 1. As many of you know, writing a World AIDS Day note is a tradition that I started back in the 1980s. I have typically written a note on December 1 and mailed it out that day. This year, I want to give you a day or two to make plans for something special on December 1 to commemorate the event. At the very least, please find and wear a red ribbon.

This December 12th will mark the 25th anniversary of my having discovered my own HIV status. For the first few years, I lived with this disease expecting it to take a sudden and fatal turn for the worst. Around 1995, research into the Protease Inhibitor class of drugs resulted in the release of several alternative medications that significantly reduced mortality from AIDS. Although we aren’t dying as rapidly nor in as many numbers as before, we are still succumbing to the severe side effects of our ongoing, long-term daily chemotherapy which is commonly and insultingly called a "cocktail." The longer we survive HIV, the more we see AIDS-related cancers begin to surface. We also are seeing increased incidence of heart disease, diabetes, stroke and other cardiovascular disorders because of the metabolic changes that the drugs cause.

HIV/AIDS is no picnic for those of us who are fortunate enough to have access to medication and the cost is staggering. At this point in my life, I am taking in excess of 30 pills a day, six to treat my HIV and the rest to treat the side-effects of my HIV meds. Still, I am fortunate that I have access to HIV meds and I am even more fortunate that I have insurance that covers the cost of my medication. If I had to pay for my HIV meds alone, I would be paying out over $3K/month just for those 180 pills that keep me alive.

Sadly, millions of us around the globe are infected with HIV and the vast majority of us have no access to medication whatsoever. People in developing countries often face tremendous challenges in finding adequate nutrition, clean water and clinics, so the dream of affordable and easy access to anti-retroviral therapies is a dim hope. In a world where we need clean water more desperately than we need treatment for HIV, where malaria and hunger kill people more frequently than does AIDS, providing anti-retroviral therapy can be very low on the list of priorities for survival. It should be a priority of the human race to find a cheap, effective treatment for all people of the world. Better yet, we must make an effort to find a cure. It is unconscionable that so much money is going to treatment that it countermands any incentive for industry to find a cure. We must find a new paradigm for how our culture values its people.

At the same time that we are seeing improvement in the physical health of many westerners with HIV/AIDS, we are learning of ongoing discrimination and stigma against people living with the disease throughout the world. We must not allow the Earth to spin in reverse. We have to remove the stigma from this infection. AIDS is a disease. It is caused by the HIV virus. We have to confront those who continue to believe that AIDS is a punishment sent from God for some kind of deviant behavior. Many try to shame others into a form of behavior that they think will protect them from HIV. In reality, there is no place for shame in the discussion of HIV/AIDS, especially when it only drives people and their behaviors underground where the risks of infection are only increased.

Please take a moment on December 1 and think about what it would be like if you were to have been infected. What would you expect, want or need from your family, friends, loved-ones, church and government. Do you think you would get it? Can you change anything to see that you would? THINK! PROTEST! SPEAK OUT! VOTE!

One obvious thing for you to do is to make a tax-deductible contribution to any charity that provides AIDS relief. If you choose to make a donation in your community, please also consider the gift of time and action. A compassionate visitor with a home cooked meal is one of the world’s greatest gifts. Often, a hug can do more for the health of an individual than you might imagine. Hugs are free and they are safe.

In closing, let me remember, as always, my friends who were less fortunate than I. Not a day goes by that I do not miss them. If you wish, please feel free to add your own remembrances in the comments of this post.

In memory of:

Ralph, NC, USA
François, Paris, France
Daniel, Paris, France
Jorge, Havana,Cuba and Washington, DC, USA
Thierry, Paris, France
Chuck, Alberta, Canada
Dip, Washington, DC, USA
Charlie, NC, USA
Thomas, NC, USA
Kenny, NC, USA
Gene, Alberta, Canada
Johnny, TN, USA
Jamie, NC, USA
Hunter, Georgia, USA
Jim,IL and NC, USA
Joel, CA, USA
Randy, NC, USA

In honor of:

All who live with HIV/AIDS around the world.


Friday, November 19, 2010

Davidson College's Annual Red and Black Ball

Please click on image to enlarge it

Please join me in supporting Davidson College's Red and Black Ball to benefit the Regional AIDS Interfaith Netword (RAIN) and the Mwandi Christian Mission Hospital. The Ball will be held on Saturday, December 4, 2010, at 8pm in the Lilly Family Gallery at Davidson College, Davidson, North Carolina.

Please email Nitya Rao for more details.

Donations may be mailed to:

Anna Gryska
Box 6141
Davidson, NC 28035


Saturday, October 23, 2010

Fullsteam Brewery Hosts Thomas Kieffer and a Network of Friends

It was with great pleasure that I attended the concert by Thomas Kieffer last night at Fullsteam Brewery on Rigsbee Avenue in Durham. Thomas performed songs from his album "Beautiful Hands." To quote from his publicity flyers, "His latest CD release. "Beautiful Hands" (2009), was recorded by David Husser (who has engineered releases for artists such as Indochine, Rodolphe Burger and Speed Caravan). Here, Kieffer shows the true variety of his artistry and talent as he creates and loops rhythms and riffs using a guitar, harmonica and vocals. His melodies are masterful and captivating. On stage his performance is even more mesmerizing as he passionately delivers a unique rock/folk-electro experience."

Click on any image to enlarge it.

My friend, Brian Svedberg of Seattle, alerted me to Thomas' show since he and Thomas have been corresponding for several years now. Brian and I met through the now-defunct 1 Giant Leap fan board, which at one time fostered a very vibrant and caring community of people with varied backgrounds and interests. It has been my pleasure to meet many of my friends from that site. Brian and I have known each other for over eight years now via 1 Giant Leap. When he came to North Carolina earlier this year as part of the road crew for Joseph Arthur's show, we were able to meet and I got to know Brian and Kathi, his partner. I really enjoyed the Joseph Arthur show and especially was intrigued by the use of looping technology that Arthur uses in his show to create the illusion of a full band when he is the only person performing. It was the use of the looping technology that caused Brian to recommend Kieffer's music to me. He said that if I enjoyed Joseph Arthur's show, that I would likewise enjoy the show by Thomas Kieffer. Brian was right!

Before the concert, I was joined by my friend Betsy and her coworker Haas (I am not sure about the spelling of his name. Please forgive me!). We met for dinner at one of my favorite eateries, Shanghai Chinese Restaurant, where the wonderful hospitality of hostess Lilly and co-host Ray is always a heartwarming experience. As Betsy was the common denominator of this trio of soon-to-be friends, she began to explain to Haas and me how our paths crossed to bring us together last night.

The common element in this story is that each of us, including Thomas Kieffer, has lived in France for some part of their lives. Betsy and I grew up together in Sampson County, NC, and were in high school together in 1976. At that time, the US Bicentennial was a huge event and the French government sent two warships on a tour of the east coast of the US to celebrate our country's birth. When the ships stopped in Wilmington, NC, our high school French class took a field trip to meet them at the port. To make a long story short, Betsy met her future husband, Bernard, that day and I translated for the two of them on their first date. We returned him to his ship that evening and several months later when his tour of duty had ended, Bernard returned to visit Betsy again. At Christmas of that year, Betsy visited Bernard in Paris and came home with a diamond engagement ring. They married a few months later in Harrells, NC, and have been together ever since.

Haas explained that he had moved to France from Iran during the tumultuous years in the 1980s and that he arrived in the country not speaking a word of French. My story was that I first went to France on a week-long tour in 1974. I returned alone in 1976 as a naive seventeen-year old and I stayed for a month with a family in Menton on the Italian border. Later, as a recipient of the James M. Johnston Scholarship at UNC, I learned that I could spend my Junior Year abroad in Montpellier, so I signed up and spent the 1979-80 school year there. In the process, I made many lifelong friends and am so very grateful for those experiences.

So, when I heard that Thomas Kieffer was coming to perform in Durham, I invited all of my friends to join us for the concert. As it turned out, Betsy and Haas were the only two who showed up...initially at least. Sadly, Haas had to leave not long after our arrival, so Betsy and I ordered some of the fantastic beer brewed onsite at the brewery. My favorite was a sweet potato beer and if you make it down to Fullsteam brewery, I recommend you give it a try.

As Betsy and I sat enjoying the music and beer, I noticed that my friend Ed walked into the room. He came over and joined us and we started to talk. Ed grew up in Bahama, NC, but, as the world is often quite small, had found his way to friendship with a Christian rock performer back in the 1970s. They met at Appalachian State University when the band Ivanhoe (named for Ivanhoe, NC, a small town within 10 miles of where Betsy and I grew up) came there to perform and the lead guitarist was nearly electrocuted due to a poorly grounded electric guitar! Betsy and I were both familiar with the band Ivanhoe from our teen years and Betsy knew their family. It was fun watching my friends get to know each other a bit and to be reminded of the complexity of paths and crossings (and sometimes, crossed wires) that lead us to become part of one anothers' lives.

I plan to return for the final show of Kieffer's tour at Jessee's Coffee Bar in Carrboro on Thursday night, October 28 starting at 8 pm. I hope that you will come out to enjoy the music as well. There is no cover charge, so you can't lose. Come out to give Thomas Kieffer a good send off so that he will return to North Carolina to share his talents with us again.


Friday, October 22, 2010

I Voted This Week...You Should Too

Here you can see the Durham County Board of Elections office, one of three sites in Durham County, NC, where early voting is taking place through October 29. For information about early voting in your area, please check the information here.

It is critically important for all of us to get out and vote this election cycle. The Republican Party is enegized and has managed to get its base out to the polls early this year. The Democrats are not nearly as excited and have the most to lose this year. If we want to see two more years of political stalemate, the Democrats can sit home and let the Republicans take over control.

Do we really want to see that happen? The Republicans are promising to repeal the advances made in Health Care Reform that were finally approved by Congress and signed into law by President Obama. I have even heard that in case the Republicans gain control of the House of Representatives again, instead of doing the business of the people, they would pursue impeaching President Obama! What are they thinking? Do we really want to go back to such an extreme approach to our government?

Please go out and vote and vote early. Urge your friends to go vote as well. We need your support now more than ever!


Thursday, October 14, 2010

Democratic Party in NC Needs Volunteers

Early voting begins today in North Carolina. The Democratic Party needs your help to get our voters out to the polls. We need people who can call folks to remind them to go vote. We need people who can drive voters to the polls. We just simply need you.

If you would like to volunteer, please call the Durham County Field Organizer, Adam Limehouse, at 919-636-9307, or the Orange County Field Director, Diane Robertson at 919-607-9604. Even if you are not in Durham or Orange County, you can call these field organizers to find out about volunteer opportunities in other areas of the state.


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