Gay Pride 2007 at Community Church of NY UU

Mark de Solla Price at Community Church of New York Unitarian Universalist for Gay Pride 2007 (delivered on Sunday, June 25, 2007)

About once a year as I’m hurrying along on the sidewalk in mid-town Manhattan, someone comes up to me on the street and asks “are you Jewish?”

Well, my father was a British Atheist and in the 1930s a Communist from a rather well known Sephardic Jewish family – that’s the “de Solla Price” part of my family name. My mother was a Danish Atheist and Communist from the same era who was Christened in the Lutheran Church, but had almost no other church attendance since.

For my parents religion, like nationalism, was something that separated people into groups of “us” and “them” and caused hostility and intolerance. They insisted that is wasn’t a “mixed marriage” as both of them were Atheist.

As a child, I was a devote Atheist, being quite vocal in my silence during anything god-related in public school or boy scouts. As a very little child, I would sit defiantly as my classmates stood and recited the Pledge of Allegiance. My mom found it chillingly close to the forced Nazi pageantry of her school years in occupied Copenhagen during the war.

My parents would read to me fairytales by Hans Christian Andersen, stories from One Thousand and One Arabian Nights, Classic Myths from the Greeks, Romans, and Vikings. All sorts of folklore and legends, from all over the world. There were tales of King Arthur and King Solomon and Martin Luther King, Jr. with illustrated histories and biographies.

As a family, we celebrated Halloween, Thanksgiving, Christmas, Passover and July 4th with equal secular enthusiasm with feigned an ignorance that others might attribute some religious meaning to any of these.

As a teenager at The Choate School, where I lived during my high school years, I learned that I was considered to be Jewish regardless of my views on religion. And the rebel in me was quite proud of that badge of honor. In my junior year, it even had the fringe benefit of my being invited to dinner with Golda Meir at the Waldorf-Astoria Hotel.

As an adult I found my own spirituality as a mix of Quaker, Taoist, Native American, Jewish, Universalist and Humanist. Today, I think of myself as a humanist Unitarian Universalist and pretty non-thetics. I’ve been a member of Community Church of New York Unitarian Universalist since 2003.

Although the Unitarian Universalist movement branched off from liberal Christianity, a recent study found that today most members identify themselves as Humanist (54%), followed by Agnostic (33%), Earth-centered (31%), Atheist (18%), Buddhist (16.5%), with Christian (13.1%) and Pagan (13.1%) being tied for smallest segment.

Naturally, all that’s too much to say when asked on the street corner, so at first I said “why yes, I am Jewish”

And that lead to my being hustled off the street corner into a nearby waiting van. No, this wasn’t some anti-Semitic hate crime. The “Mitzvah Van” (the Hebrew word for “Good Deed”) was there so I could be “helped” by an ultra-Orthodox Lubavitch Hasidic Jew to and have “the word of the lord” – as in Tefillin or little leather boxes with excerpts from Deuteronomy – tied onto my hand, and head and being coached to repeat a phonetic Hebrew so I could perform my morning prayers. Not my idea of them doing me a good deed.

After that experience, I now answer “No, I’m not a religious Jew.” But of course, my Jewish family heritage is very important to me, and I treasure a whole host of traditions, stories and heirlooms.

Today, being “Pride Sunday” got me asking, like the quintessential Broadway musical A Chorus Line, “Who am I anyway?” What am I proud of?

Well, that’s not easy to answer. Politics is something that defines me and I’m proud of.

Senator Barack Obama wrote in his 2006 book, “The Audacity of Hope”:

“I am a Democrat, after all; my views on most topics correspond more closely to the editorial pages of the New York Times than those of the Wall Street Journal. I am angry about policies that consistently favor the wealthy and powerful over average Americans, and insist that government has an important role in opening up opportunity to all. I believe in evolution, scientific inquiry, and global warming; I believe in free speech, whether politically correct or politically incorrect, and I am suspicious of using government to impose anybody’s religious beliefs – including my own – on nonbelievers. Furthermore, I am a prisoner of my own biography: I can’t help but view the American experience through the lens of a black man of mixed heritage, forever mindful of how generations of people who looked like me were subjugated and stigmatized, and the subtle and not so subtle ways that race and class continue to shape our lives.”

Okay, from that I think I’m clearly a Democrat too, although I have crossed party lines for particular candidates and issues in the past, but luckily my mother never found out.

From my work with HIV/AIDS, I know that there are lots of MEN who like to have sex with other men, but consider themselves heterosexuals, not even bi-sexual. We know that Abraham Lincoln (1809 –1865), Eleanor Roosevelt (1884 –1962) and George Washington Carver (1864 -1943) all had multi-year, live-in same sex lovers, but none of them would consider themselves to be gay.

It’s kind of like “being a vegetarian” which to some folks means only eating plant-based foods, to others it includes fish and eggs, and other it’s that they don’t eat red meat except when they do.

That duality must add lots of stress to live. Vinny, you don’t have to worry; this has never been a borderline issue for me. Clearly, I’m 100% gay male.

What else defines who I am as a person?

I’m also the author of a book, a magazine and blog writer, subject of various newspaper, magazine, TV stories and even an HBO documentary. I’m political and civil rights activist, never missed voting, even in the local elections and a second-generation life-long ACLU member. I’m married to a same-sex husband, I’m a person who lived with HIV since 1983 now living with AIDS, I’m the long-time caregiver of a chronically ill spouse; we live with Troika, a Doberman-mix dog rescued from hurricane Rita and from Texas. (making our adopting her a double Mitzvah)

For thirty years, I was a technology consultant, but for the last six months, I’ve been out on disability while I my body and mind undergoes some pretty brutal weekly anti-hepatitis C treatments, so I can’t really claim any business card title right now, which feels odd. Although I still am an avid reader and a Macintosh and TiVo user.

Ethnically and culturally, I’m Danish, English, and Jewish; Vinny’s culturally Italian and toughly recovered from being raised Catholic.

Well that was a pretty long list of important parts of who I am. But today is the Gay Pride parade, so let me talk about that part for a bit, and then get back to those other things.

Thirty-eight years ago, on June 27, 1969 a bunch of local fags, dykes and drag queens hanging out at Stonewall Inn, the local gay bar on Christopher Street at Seven Avenue, got feed up of being shaken down by the routine corrupt cops. The ensuing riot lasted for days. In hindsight, it is often used to mark the start of the modern Gay, Lesbian, Bi- and Transgender Civil Rights movement here in America.

My friend Dennis Daniel from POZ Magazine, did a little research on the original news coverage of those riots:

The New York Post ran the simple headline “Village Raid Stirs Melee”

The New York Times, told a more in-depth version: “Four Policeman Hurt in ‘Village’ Raid / Melee Near Sheridan Square Follows Action at Bar”

New York Daily News had, how shall I say, it’s own point of view with the headline “Homo Nest Raided / Queen Bees are Stinging Mad”

To mark the year anniversary of the riots, on last Sunday in June 1970 there was an angry politically rally that demanded “gay liberation” and “gay power” It was a protest and defiantly NOT a parade anymore than the 1965 march out of Selma, Alabama was a parade.

But over the years a funny and wonderful thing happened:

Mae West is quoted as saying “For a long time I was ashamed of the way I lived.” To which a reported asked “Did you reform?” and Mae quipped back “NO! I’m, just not ashamed anymore.”

We learned, from the Black Power movement that “Black is Beautiful” and that taught us that “We’re Here, We’re Queer, and We’re Fabulous” – we learned to be proud of being gay.

By the time as a teenager in the late ‘70s, when I first marched in New York City’s Gay Pride Parade, it was a rite of passage for me. I’m an adult. I’m sexual! The gay disco party parade was in high gear, pun intended.

The early 1980s were a GREAT PARTY and there are lots of amazing stories to tell from that era. Unfortunately the details are a little fuzzy in my mind. Luckily, since I worked at Studio 54 and some of the other legendary discos of the age, I was able to be on camera and identified in print, so I have an archive of photos, clippings and memorabilia that reminds me of the events, even when the brain cells are missing. Yup, that’s me in the photo.

Even more Unfortunately, this was also the ground zero for HIV infection in America. By the end of the 1980s, 150 of my friends and colleagues and dance buddies would be scratched out of my address book by the virus.

For many of us, it’s stopped being a parade and returned to a defiant protest. I was part of the Healing Circle, dressed all in white with custom T-shirts for the day announcing that “Love Heals”. Every few blocks, we’d form a circle, bang on chimes and chant in a new age way.

A drag queen came up to our group and said “I love heels too – just can’t walk in flats” and I realized that it was both a march and a parade. That was the same year a I famous disco star looking cadaverous was pushed in a wheelchair down Fifth Avenue waiving. I vowed I would never miss marching in the Gay Pride Parade.

Then another 100 of my friends died, and it was harder to protest and harder to party. I retreated to the Connecticut shores for a few years to lick my wounds, heal my soul.

Well, I’ve been back in New York for well over a decade now, but haven’t returned to either marching or parading, not because I’m not proud of being gay, nor that I’m not mad as hell and not going to take it anymore, but there are lots of facets to who I am, and lots of things worthy of celebration.

When I asked Vinny, what made him proud of his Italian heritage, he was quick to answer: Art, architecture, design, fashion, Opera, passion, Leonardo da Vinci (1452 – 1519), Michelangelo (1475 – 1564), and Gianni Versace (1946 – 1997). Great food and the best red wine – especially those from the Allegrini Family Vineyards, just north of Verona in northeastern Italy.

When contemplated my Danish heritage, I thought of the sensible Socialist Order of things, of the architecture and modern design and Tivoli Gardens (my favorite place in the world) and a few dozen cakes, pasties, and candies that I know fondly by Danish name. Then I thought of a story my mother told of the Danish king of her dark childhood days:

During the Nazi occupation of Denmark, King Christian X (1870 –1947), would ride on horseback through Copenhagen each day as a defiant symbol of Danish sovereignty. The king even refused to have of the Nazi flag over Christiansborg Palace. During the Nazi occupation, a senior general raised the Swastika anyway. The king instructed him to remove it. When the general refused to do so, the king declared, “Then a Danish soldier will remove it.” The German officer said that such a soldier would be shot. The king’s reply was “I think not. For I shall be that soldier.” The general immediately ordered the removal of the flag

Remembering that story help me understand that figuring out who I was as a person and what my heritage was. It does not require some personality quiz like eHarmony- with a laundry list of check boxes. It’s about learning and retelling the our cultural myths and legends.

I needed to return to those fairytales and folklore I learned a child. These are not just fiction. They are our profound truth. They are who we are as people.

Our heritage does not require that you carry some particular inherited DNA. We are all children of the earth and all worlds’ epic stories and myths are our legacy. We just have to figure out which ones resonate with each of us.

At our annual Passover Seder as we celebrate it here at Community Church, we are told to each new generation, that we are all Jews freed from Slavery.

In this same way, we are all proud drag queens and queers at the Stonewall Inn on of June 28, 1969 who said, “never again to being shaken down by the corrupt cops and beaten up by intolerant thugs.

We are all Danish subjects living under all powerful and seemly invincible Nazi regime, but watch our noble king defiant riding free, showing us that – just by the power of right – we all will eventually triumph and be free ourselves.

We are all segregated but proud black men and women who shared a dream on August 28, 1963 on the steps of the Lincoln Memorial with Dr. Martin Luther King, Jr.

We are all the impassioned protester standing proudly alone against the unstoppable force of a whole column of tanks in Tiananmen Square on June 5, 1989.

For years and years, my late mother did a weekly radio op-ed piece similar to Andy Rooney where she’d comment on the state of the world. These 90-second nuggets would be broadcast throughout the week. Each segment always ended “and I’m Ellen de Solla Price, and that’s my point of view” Everywhere she’d go, bank tellers, shop clerks, business executives would recognize her name and love her or hate her.

Mostly she talked about political issues and social injustice in a way that got folks to notice. Some time between Thanksgiving and Christmas, however, she’d kept returning each year to her reminder that although Men are far more visible in the world of politics and business, it is the Women – our wives, our mothers and our grandmothers – who were the keepers of our cultural identity, our ethnic heritage and our family traditions. These women taught us how birthdays were supposed to be celebrated, how Christmas was supposed to look and feel, and holiday dinners were supposed to taste.

In honor of today’s Pride Parade, I’d like to ask you to think what stories made you proud of who you are? Re-read these stories. Re-rent those videos. Tell the stories to your children, your friends at parties, or to a web-cam for YouTube. Write them down, type them up, or post them on-line. Who you are, who you will be, and who you will be remembered as, are all determined by the stories you choose in your life. I know many of you here today. You’re not a shy bunch, nor have you lived dull boring lives. Go tell some impassioned stories!

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Vinny’s Requim in Artwork by Barton Lidice Bene

Two Trips Out of the Apartment for Vinny

Monday, January 27, 2003

Two Trips Out of the Apartment for Vinny: He’s Filmed, Immortalized and Museumed
Vinny was filmed today by a TV crew at Howard Grossman’s office for a bit about medical marijuana for MPP.org and maybe a PBS thing too. Vinny’s amazing. He can reach down and summoning the will power to pull it together and he looked and sounded great. And it got out of the house with help from me and Nicole, his wonderful 8-hours-per-day home health care aide (I don’t know how either of us would get along without her). Now he’s fast asleep on oxygen and out of it for the day (or two). But he looked like a movie star when the camera was on — it really is amazing that he can still do that. They will let me know about air dates, etc.

When we were at Howard’s office (Vinny doesn’t have doctor’s appointments anymore — one nice plus with hospice care) we saw in the office a new work by Barton Benes — a large reliquary with two notable (to use) compartments. One with a rubber band used on one of Vinny’s twelve endoscopic banding procedures and retrieved when it passed (we were worried at the time that it wasn’t normal to find blue rubber things in one stool), the other with dose of Serostim, which I estimated at costing $96,000 per year. A third section had Kevin O’Leary’s band aide from his first (negative) HIV test. Lots of other familiar names in the other boxes too.

This was the first time that Vinny made it into Barton’s immortality — it felt kind of strange, given all of what’s going on. Howard asked if Vinny would rather it wasn’t in the medical office, with his name and all. Vinny replied that he was proud to be there. And so was I. We also got a very nice check from Howard for the “taking care of Vinny fund” and that really helps at a expensive time and Howard give Vinny a copy of “NYC Pet Project” a coffee table book which had a picture of the whole doctor’s office staff with Nikko, Howard’s bullmastiff / lap dog.

The dog book kind of made me sad, as Vinny spent the summer and fall saying he had to get well enough to get a puppy for Christmas, and instead on his few good days he goes for a walk with his hospice nurse to the corner pet store to look at the puppies in the window, but a dog is just out of the question for now.

At the end of last week, Vinny was so stir crazy with being shut-in and it being so cold outside. Vinny was feeling pretty good and he hasn’t been out of the house any further than to Manatus (the gourmet dinner on the corner) since my brother’s wedding on 12/29/03. On top of all that, I worked a quite bit the last few days and I think Vinny was feeling stranded, unable to do even the usual homebound stuff like watching TV or reading.

I decided that we needed some nice weather NOW, so I took Vinny and the Wonderful Nicole by Taxi to the [http://www.metmuseum.org/ Metropolitan Museum] to have a nice long walk in the various sunny, warm, wind-free courtyards. Nothing to do with looking at art, just enjoying the indoor weather and serenity. We got a cab right off, but just the trip in the taxi was too much — but he so wanted to be going out, so we went anyway. From taxi to wheelchair, and wheeled though the Temple of Dendur [http://www.metmuseum.org/Collections/search-the-collections/100004628], through the American Wing, stopping off at another men’s room, into the cafe for half a sandwich, rolling on thought the Islamic wing, detouring via the Chinese Astor Court, and after one more stop at the men’s room, Vinny couldn’t stay awake for too much of it and was even too tired to really appreciate being out of the house. After two hours and $100 later, we got from taxi to wheelchair back to taxi and got him manhandled back into being on oxygen. And it took a couple of days to recover from having such a wild time.

The nurse left at the end of the day, and was a long night here. I first stopped off to the video store to have something fun to watch while I’m on-duty. Gregory will keep an eye on Vinny while I’m out and maybe I’ll have a bubble bath before he’s leaves for a bit. But I’m pretty tired myself, so there’s not to much in store for my night. Vinny was insistent that he wanted peas and carrots with his oatmeal for dinner, but hopefully he’ll forget about that and I can sneak him either apple-cinnamon-raisin oatmeal (my home-cooked specialty) or pureed vegetable soup with peas and carrots…

REMEMBER to visit Vinny’s website http://www.metamorphics.com/vinny/ [http://www.MarkdeSollaPrice.com/vinny/] for the latest news, pictures, and goings on.
Sorry to say that we *STILL* have haven’t had any time to sit down and thank so many of you personally (as I want to do really soon and plan to on Tuesday) for generously clicking through to Vinny’s website http://www.metamorphics.com/vinny/ [http://www.MarkdeSollaPrice.com/vinny/] or send an old-fashioned check to us to help out with all the expenses. It’s made Vinny and I feel very loved by our community, not to mention able to keep the phone and lights on, pay the new calendar year deductibles, and keep us all fed.

We’d like to thank, in addition to our terrific biological families, Nicole (our 8-hours-per-day home health aide) and Gregory Dean who’s been invaluable:
Since last e-mail, in chronological order we’d like to thank: Susan Hays, Don & Ondree Israel / Benefit Concepts Systems, Andrew Kirtzman (again!), Rod Renfrew, Krista Gromalski, Matthew Levine, William Epperson, Ava Lev, Josephine Johnson, Judy Lobis, Alec Bentley, Andrea Levy, Howard Grossman / Polari Medical Group.
And of course the folks we thanked last time who helped get us this far: Andrew Kirtzman, Sean Strub, Larry Kramer, David Barton, Henry Scott, Andrew Tobias, Dick Scanlan, Trey Speegle, Corey Zucker, Suzanne Golden, Don Israel, Jeff Hoover, POZ Magazine/ Smart + Strong, Susan Hays, Cathy Parsons, Laura Hannon, Michael Workstel, John Catlett, Joan Turner, Martha Bellieveau, Mary Curtin, Cathy Parsons, and our Aunt Joan & Uncle Norman Cravitz from England who just celebrated their golden wedding together!
What a great bunch of folks we know — and some we don’t know too well, but who are friends of Sean’s (again, thanks Sean!). I don’t know what we would have done without all this help. It’s been such a long battle, and emergency last-ditch reserves (both financially and emotionally) have been used up long ago.

I feel a little greedy asking, but I don’t know how we’d make it through all this without your calls, notes, cards, e-mails, hugs, flowers, prayers, helping with errands and of course, those financial PayPal donations (click here ) and old-fashioned checks payable to “Metamorphics Corporation” It’s made a LOT of difference to not just getting by, but the level of comfort that we could give Vinny.

Since Vinny rarely gets out, YOUR HOUSE VISITS ARE WONDERFUL — those of you who have coming over for a few hours to the house with all sorts of creative gifts to cheer Vinny along — you have really given something very special to both Vinny and I, and I would strongly encourage visiting us here, if it’s something you’d like to do. Thank you!

Love, Mark and Vinny

A large reliquary by Barton Lidice Bene

Picture 1 of 3

A large reliquary by Barton Lidice Bene in Dr. Howard Grossman's office -- with two notable (to use) compartments (see details)

“Liver Lovers” by Mark de Solla Price in POZ Magazine, February 2001

“Liver Lovers” by Mark de Solla Price in POZ Magazine, February 2001

Posted Thu, 2001-02-01 13:00 by Mark de Solla Price

Thursday, February 01, 2001

“Liver Lovers”
POZ Magazine, February 2001
by Mark de Solla Price

When your liver goes South, an organ transplant may be your final destination. Mark de Solla Price takes us along on his partner Vinny’s journey to get one.

November 13, 2000
Today my husband, Vinny Allegrini, and I are in a strange no-man’s land, camped on the 14th floor of a bland office building on Mount Sinai Hospital’s sprawling 10-block campus between Harlem and the monied enclave of New York City’s Upper East Side. We’re here for the second of three full days at Mount Sinai’s Recanati/Miller Transplantation Institute.

This is the nation’s third-largest liver transplant center, where more than 175 transplants have been performed in the past year. More important for us, it is one of the few hospitals in the world that will consider someone who is HIV positive as an organ transplant candidate. Of 120 transplant centers in the U.S., only the University of California at San Francisco, the University of Pittsburgh Medical Center and Mount Sinai have ever done organ transplants for HIVers, although hopefully a dozen other centers may perform them soon.

Vinny and I landed here because after more than a decade of chronic hepatitis B coupled with the toxic effects of HIV drugs, Vinny’s liver is failing. We don’t know how much longer he has with all the stopgap measures we’ve been taking, but we do know that the only treatment option for end-stage liver disease is a transplant. Once we accepted that last summer — which wasn’t easy — we began to do whatever it takes to make one possible.

I’ve had HIV for 20 years, and Vinny has been living with both HIV and hep B for 12. In the eight years we’ve been together, we’ve become quite a health-care duo, each the other’s caregiver. Our doctors joke that we double-team them: Regardless of who has the appointment, we both show up. When our insurance company, Physicians Health Services (PHS), stopped covering office visits for our testosterone injections, Vinny and I learned how to give each other the intramuscular shot with those intimidating two-inch needles. We’ve figured out together how to do research and work the benefits system. But even with all these skills, the journey toward a transplant is sure to be long and difficult, with no certain success.

Transplants are insanely expensive, even compared with the enormous expense of HIV care: Kidney transplants can cost up to $250,000; liver transplants, up to $1 million. Post-transplant meds can cost $20,000 a year for life.

Beyond the dollars involved, donated organs are incredibly scarce and the waiting list grows steadily. In 1999, 4,698 liver and 12,483 kidney transplants were performed, while more than 4,500 people died waiting for an organ to become available.

Because of the huge expense and the scarcity of organs, the evaluation process is extremely complicated. The goals are to prioritize those most in need and to reject those unlikely to recover from surgery. In the past few days at Mount Sinai, we’ve undergone a mind-numbing array of tests, interviews and exams. By the end of the process, Vinny will have completed a medical assessment by the liver transplant team (four doctors and 13 vials of blood!), two cardiology tests, a chest X-ray, TB screening, abdominal CT scan and ultrasound, evaluation of his HIV and hep B infections, a dental exam and sessions with a psychiatrist and a social worker.

A few years ago, simply having HIV was enough to knock you off the list. Perhaps biased by AIDS ignorance, experts feared both that the strong meds used to prevent organ rejection would destroy PWAs’ already-suppressed immune systems and that HIVers wouldn’t live the five-plus years postsurgery to justify the use of donated organs. But due to the advent of HAART, along with activist pressure from Jeff Getty of Survive AIDS (formerly ACT UP/Golden Gate) and others, liver and kidney transplants have become available to a very few HIVers over the past two years.

“Historically, HIV precluded any possibility of liver transplants,” says Sam Sigal, MD, the attending transplant hepatologist at Mount Sinai. “The combination of HIV and immune suppression would have been devastating. However, with new, effective HIV treatments, the issue has been reconsidered. Now transplants are being performed in selective cases.” So far, just 13 HIVers have received a liver, and five a kidney. All but two are still living. And it looks like serious infections in positive transplant recipients are no more frequent than in others. In December 1998, Alan Hext, of Palm Springs, became the first HIVer to receive a liver transplant; though he was hospitalized once for an oral infection (probably related to the immune-suppressive antirejection drugs), overall, he’s quite healthy, with high CD4s, an undetectable viral load, a thriving liver — and a new baby son.

This anecdotal data is encouraging, but Vinny and I know we’re in fairly uncharted territory. The other day, Vinny told me, “It’s scary to hear that only one operation like mine has ever been performed at Mount Sinai, and that our insurer has never approved coverage for an organ transplant for someone with HIV. But being told that your liver is beginning to fail puts a lot of things in perspective.” We just keep crossing one bridge at a time.

June 16, 1999
Today is the anniversary of the day Vinny and I first met as “prayer partners” at an HIV workshop led by spiritual guru Marianne Williamson. Though we both believed then that we were beyond romance, a life-challenging condition can make events progress at warp-speed. I was living in New York City working on a book, and Vinny was cutting hair in West Hartford, Connecticut, but that summer we began to live together. We’d alternate between staying with Vinny’s ex-lover, Gregory Dean, in West Hartford, and my ex in New York City. Our exes form a kind of family for us; Gregory, in particular, would soon become essential to Vinny’s future.

In recent weeks, Vinny has developed anemia and a mysterious, intense pain in his GI tract. So instead of celebrating our six years together, we headed off to our GI and liver specialist, George Haroutiounian, MD. There, Vinny had to undergo an endoscopy, in which they shove an 18-inch robot arm down your throat, while I got to watch live on a video monitor. I knew Vinny’s throat was supposed to look pink and smooth, but instead I saw swollen, lumpy veins. Vinny had internal bleeding from leaking varicose veins in his esophagus.

It turns out that Vinny’s chronic hepatitis B, along with the antiretrovirals he’s been on since 1995, has caused cirrhosis of the liver. Because the liver filters impurities from the blood, when scar tissue (cirrhosis) clogs the liver, pressure can build up in the plumbing between the heart and liver, causing the veins to balloon and leak. Difficult to diagnose and treat in time, this internal bleeding is often fatal, so it’s critical to watch for. It’s also pretty common: Many HIVers are coinfected with hepatitis, and each year about 10 percent of people with hep B and 85 percent of those with hep C end up with chronic hepatitis — the leading reason for liver failure in the U.S.

For the next year, Vinny will follow a very aggressive treatment, entering the hospital on a monthly basis for endoscopic surgeries to “band,” or cauterize, the leaks. These procedures are extremely painful because when you have liver damage, only tiny amounts of anesthesia can be used. Luckily, our surgeon, Leslie Seecoomar, MD, is, in Vinny’s words, “truly gorgeous — though hetero — a Ken doll with blue-black hair.” This helps Vinny distract himself during the surgery. One doc told us that Vinny holds the Roosevelt-St. Luke’s Hospital record for the most successful endoscopic surgeries.

January 12, 2000
Vinny had just left on Amtrak to visit his family in Hartford and I was about to head out the door to the gym when I got a call from our regular HIV doc, Howard Grossman, MD, with the results of Vinny’s latest blood tests. His hematocrit (the percentage of blood made up of actual blood cells) was dangerously low. A normal reading is 40 to 50 percent; Vinny’s was under 20. Apparently he’d had another serious bout of internal bleeding.

It seemed to take forever for Vinny to arrive in Hartford and call in. I told him to get on the next train back. While I was waiting at the station, Haroutiounian’s office paged me: “Don’t come to the office. Go straight to the emergency ward for a transfusion.”

Vinny tends to have a great attitude, and I’m the sort who stays calm in an emergency, but the next 24 hours were tough for both of us. This was the height of the flu season, and the hospital was packed, complete with TV crews covering the pandemonium. Luckily the transfusion stabilized Vinny, who was once again endoscopically patched up. By the time we got home, we’d both been up for 48 hours. We collapsed on the bed and didn’t leave the house for two days.

May 31, 2000
Life barely seems to get back to normal anymore. While we were in Copenhagen to celebrate my 40th birthday, Vinny had yet another bout of internal bleeding. We rushed back to New York to find that his condition had so deteriorated — Seecoomar said his throat looked as if no repairs had been done at all! — that drastic action was required. Vinny got a TIPS (transjugular intrahepatic portosystemic shunt) installed in a three-hour, high-tech procedure — a catheter was inserted through his neck and the shunt implanted by remote control. The shunt will serve as a partial liver bypass to relieve the pressure. Vinny’s internal pressure number went from 15 (dangerously high) to 6 (the low end of normal) after the surgery, which greatly reduces the likelihood of more internal bleeding, at least for now.

As with most HIV remedies, the downside soon emerged: With all that blood bypassing liver filtration, so many toxins built up that Vinny developed “portal-systemic encephalopathy,” a condition that causes extreme fatigue, mental confusion and motor skill problems. The classic test is to ask the patient to put his or her arms out, palms forward, like a traffic cop signaling to stop. People with encephalopathy will involuntarily flap their hands, which, scarily, is exactly what Vinny did. It was as if he had instant Alzheimer’s. Although serious, the condition is generally reversible with drugs. In Vinny’s case, we used lactulose (Kristalose) and neomycin, and once again he rebounded.

August 21, 2000
Today, as we headed for our monthly checkup with Grossman, we were feeling pretty happy about Vinny’s condition. He’s had to rest a lot, because the liver damage taxes his system, but on good days he works to build his stamina with moderate exercise. We had the sense that his health could remain stable for quite some time. Unfortunately, Grossman didn’t share this view. Although Vinny could be stable for a few years, Grossman said, his condition also might destabilize quickly to the point where his only option would be a transplant. Grossman strongly suggested that we waste no time beginning that lengthy process. If we waited until Vinny was desperate for a transplant, it might be too late to get one.

Both Vinny and I left feeling shaken up. But within days, we set up our first meeting with Sigal, the transplant expert at Mount Sinai. The current guidelines, he told us, limit access to those who have never had an opportunistic infection or a CD4 count below 200, have zero viral load for both HIV and hepatitis, and are otherwise healthy. Technically, Vinny doesn’t qualify, but his PCP and low CD4s happened years ago, prior to his taking HAART, so we’re hopeful that he’s close enough for the folks at Mount Sinai. Once Vinny’s intensive evaluation is complete, the Recipient Review Committee will make a final decision.

August 24, 2000
This process has been Kafkaesque. Before you even start the headache of an evaluation, you must be preapproved by your insurer. Our HMO-style PHS naturally wanted this costly process taken care of “in the network” of contracted facilities. However, none of the three hospitals that do transplants for HIVers are in the PHS network. So Mount Sinai refused Vinny’s insurance and referred him to New York University Hospital; NYU, which doesn’t do transplants on HIVers, sent us back to Mount Sinai, which sent us back to NYU. This Catch-22 would have been funny if Vinny’s life weren’t hanging in the balance, but we were freaked.

Finally, today, a PHS supervisor was able to break this infinite loop and authorize us “out of network,” at least for the evaluation. In fact, PHS is now covering the evaluation stage for several HIVers, but since no one has yet progressed to surgery, the jury is still out on whether PHS will cover the transplant itself. And our epic insurance battle is hardly unusual for people with HIV who need a transplant.

The next obstacle was a legal one: Vinny’s HIV meds cause extreme nausea and vomiting. But because all of the approved antinausea meds are metabolized in the liver, if Vinny were to take them, he’d end up in the hospital with encephalopathy again. One of Vinny’s regular doctors suggested that he try medical marijuana, which Vinny used with great success. However, Mount Sinai classifies use of medical marijuana as “illegal drug use” — if Vinny continued to use it, he’d be rejected as an “active drug addict.” So a few months ago Vinny stopped using marijuana and signed a contract allowing random drug testing.

Now he has to get used to constant nausea and throwing up onto the curb as we walk along the street. This isn’t exactly fun, but we had no choice. This isn’t a rule we’ve been able to bend — yet.

September 1, 2000
If Vinny is accepted into the transplant program, he’ll be added to the UNOS (United Network for Organ Sharing) list — a centralized database to match up the scarce organs with those in need. Matches are based on medical urgency, time spent on the list, compatibility of donor organ (for livers, it’s blood type and size; for kidneys, tissue type matters, too), and location. Potential recipients move up the list over time and as their condition worsens. That’s when the final Catch-22 kicks in: It’s common for people to wait years before they make it to the top of the list — so by the time they get to undergo this major operation they’re usually critically ill. Not ideal.

Here’s the silver lining: We recently found out that once Vinny is accepted into the program, he may have a better option: a “living donor” transplant. In this procedure, first performed in 1989, a healthy person donates about 60 percent of his or her liver, which, unbelievably, fully regenerates in both the donor and recipient in six to eight weeks. (A kidney donor gives up one kidney, and survives fine with the other.) The quality of an organ from a living person is generally better than one from a cadaver: It can be carefully prescreened and then transplanted quickly, rather than spending a day or two on ice in transit. But this procedure is technically far more difficult than transplanting a whole liver because the blood vessels and bile ducts have to be carefully divided between the donor and the recipient.

Nearly a third of all kidneys transplanted come from living donors, but fewer than 1 percent of livers do. The first such operation in New York state was performed only two years ago. The procedure’s been done just once at Mount Sinai on an HIVer (according to the senior clinical coordinator there, that person is still doing well after a year). The biggest advantage of a living donor is that we won’t have to wait for the transplant until Vinny gets critically ill. Of course, we need to find a donor with the same blood type as Vinny, the same physical size, in great health and — this rules me out — HIV and hepatitis negative. So far no living donor at Mount Sinai has had a serious complication, but as with any major surgery, there is some risk.

Something incredible happened this evening when Vinny was driving to a restaurant with Gregory, his ex. Suddenly, Gregory, who has the same blood type as Vinny, turned to him and asked if he might be able to donate part of his liver. Vinny says that he was completely speechless for a long moment, and then they both broke down crying, hugging and crying. When Vinny called me with the news just now, I started crying, too. “Vinny’s been my best friend for more than 17 years, even though we went our separate ways romantically,” Gregory would later tell me. “He’s pretty remarkable, and it’s been rough to see all that he’s had to go through medically. He’s my true family — when I heard that I might be able to qualify as a donor I just knew I wanted to do it.” Vinny and I are blown away by Gregory’s act of love — and extremely grateful.

Once Vinny is approved as a transplant recipient (think positive!), Gregory will face his own array of testing to determine whether he’s in fact a suitable donor — a process that may take several months. “If everything works out,” Gregory will point out, “we’ll all be living together for a while as Vinny and I recuperate from successful surgery.” It’ll be just like the old days, when we all shared Gregory’s apartment in Connecticut.

October 3, 2000
For now, we’re focused on getting Vinny “on the list.” Our attitude is to make a liver transplant viable but put off needing one for as long as possible, with steps like his shunt, the endoscopic surgeries and therapies for liver disease symptoms — the topic of today’s visit with Haroutiounian.

While many people in the early stages of hepatitis find that treatments with interferon fend off liver damage, Haroutiounian said that Vinny’s cirrhosis had progressed too far for the drug to be of use. Instead he put Vinny on the hep B drug Epivir HBV, a.k.a. 3TC — the same drug used to fight HIV but in a much lower, 100 milligram per day dose. (Note: HIVers who have never taken 3TC may want to take a pass, because the low dose may promote drug resistance.) On this med, Vinny has consistently tested negative for HBV DNA — a viral load measure for hepatitis.

We’ve also been swamped with helpful suggestions for liver-supportive foods and herbs; several experts recommended nutrients that raise liver levels of glutathione (N-acetyl cystine, vitamins C and E, alpha-lipoic acid and glutamine) as well as the antioxidants silymarin (milk thistle extract) and coenzyme Q-10. Some liver experts recommend avoiding animal protein (with its high ammonia content) to reduce encephalopathy, but with Vinny’s wasting and nausea, he wasn’t able to tolerate this diet. So far the only thing that’s clearly helped Vinny’s liver labs is the milk thistle, at 400 mg per day. When he takes it, his liver scores improve; when he stops, they get worse. Hardly a clinical study, but good enough for us.

Just like living with HIV, liver disease is a game of playing for time. “We’ll just play the cards as they are dealt and keep moving forward,” Vinny says. “There is a remarkable amount of power in just doing it and letting the details take care of themselves.”

December 1, 2000
Vinny and I spent the evening at an AIDS benefit at Carnegie Hall, and tonight we’re full of hope. This is the strange, wonderful future we’re visualizing for Vinny: six to eight hours of transplant surgery, followed by two to three weeks in the hospital and a footlong scar above his belly-button; and then a barrage of drugs to prevent infection and organ rejection. After recovery, doctors say Vinny’s low stamina should abate; three to twelve months after surgery, he should be able to work again and lead an active life.

In the earliest days of organ transplants, rejection was sometimes fatal, but with improved antirejection drugs — cyclosporine (Neoral), tacrolimus (Prograf), prednisone and azathioprine (Imuran) — this has become extremely rare. Today the big dangers are hepatitis recurrence and complications brought on by the immune-suppressive antirejection meds themselves, especially bone and cardiovascular disease and opportunistic infections — a special concern for HIVers. Common infection-fighters include Bactrim to prevent PCP, acyclovir to prevent viral infections, clotrimazole (Mycelex) to prevent oral thrush, and nystatin, an antifungal, to prevent vaginal infection. Doctors also recommend aspirin to decrease blood clots in the new arteries and veins. (A warning: Laurie Carlson, UCSF’s transplant study coordinator, informed me that many transplant meds interact with HIV meds and affect absorption of both classes of drugs, so dosing must be regulated very carefully. In fact, Dr. John Fung, Chief of Transplant Surgery at the University of Pittsburgh, attributes one of their two HIV positive liver transplantee deaths to the lack of knowledge about the interactions between these drugs by the patient’s own non-transplant doctors.)

We might expect Vinny to have at least one episode of organ rejection in the first three months; this requires hospitalization but is usually treatable. Since Vinny has hep B, he’ll also have to get lifelong monthly infusions of hep B immune globulin (HBIg) to reduce the likelihood of hepatitis recurrence.

Kidney and liver transplants are enormously expensive and complex procedures. But they have a good track record (they’ve been performed since 1954 and 1967, respectively) and survival rates are high: about 80 percent for liver recipients and 95 percent for kidney recipients. Some live up to 30 years after surgery. While it’s too early to predict long-term success rates for people with HIV, our message to those with serious liver or kidney disease is: It is possible. As for us, we hope to lead a long and happy post-transplant life together.

December 8, 2000
Just as this article is going to press, we get a call from Sigal at Mount Sinai with some disturbing news: Vinny’s latest liver CT scan shows two small tumors. Given that Vinny has cirrhosis and hep B, there’s no question that these are liver cancer. Such small tumors are common in people with extensive liver damage, and tend to be well behaved, but Vinny will have to repeat the CT scan every two months to monitor the situation. If the tumors start to grow, he may have to begin anticancer treatment on top of everything else; more than ever, a transplant is our only hope. Optimists as always, Vinny and I are focusing on the positive: These tumors are a UNOS “listing criteria,” so they may greatly expedite Vinny’s acceptance into the transplant program.

A Liver Runs Through It

Gregory Dean on three-way love, gay friendships and the gift of life.

I’m orIginally from South Carolina, and ever since I came North, Vinny’s been the mainstay in my life. We met back in July 1983, and were partners for six years; by now he’s seen me through four relationships. Vinny always makes sure I have a place to go for the holidays. He looks out for me. Whenever I have problems, and no one else in the world to talk to, he’s there. Once, when I was on the verge of a breakup, my partner punched me in the face. The first thing I did was call Vinny, crying hysterically. And he knew what to do; he even called the cops and made them come to the house.

When I heard that a living liver donor was a possibility, I immediately thought, “I can’t imagine this world without Vinny.” I didn’t talk to anyone else, because they’d all say, “No, don’t do that.” Making the offer just felt natural.

I’m not afraid of what’s ahead. I’ve always been fairly healthy, and from what I’ve read, your liver regenerates itself. A couple of friends think my decision is absolutely wonderful, but one thinks I’m crazy, that it’s too risky. Am I going to tell my family? No. They have a tendency to freak out.

I believe that we’re all part of a universal community. You know that thing about karma, how what goes around comes around? You help someone today, someone else may help you tomorrow. I’ve seen too many people go in ugly ways — including a boyfriend who died of AIDS in 1994, who went down very, very quickly — and it just isn’t fair. It could be any of us. I hope, after all the tests, it works out for me to do this. Because Vinny is an amazing person.

Resources

To Give
If more people signed up to be organ donors, livers and kidneys wouldn’t be so scarce. For HIV and hepatitis neggies, here’s how to do the right thing:

Call the Coalition on Donation/Share Your Life Campaign
at 800.355.SHARE to get info and your donor card, or check out www.shareyourlife.org.

To Receive
If you or someone you love is coping with organ damage and may need a transplant in the future, start planning now:

United Network for Organ Sharing
the definitive resource on transplants, at www.unos.org or 888.TXINFO1

American Liver Foundation
for info on liver disease, at www.liverfoundation.org or 800.GOLIVER

National Kidney Foundation
for info on kidney disease, at www.kidney.org or 800.622. 9010

HIVandHepatitis.com
an info-packed site all about HIV and hepatitis co-infection, at www.hivandhepatitis.com

Survive AIDS
a San Francisco-based activist group that has taken the lead on advocating for transplants for HIVers, at 415.252.9200 or www.surviveaids.org

Centers that perform HIVer organ transplants:
University of California at San Francisco (UCSF) at 415.502. 8322 or www.ucsf.edu; University of Pittsburgh at 412. 648.3200 or www.sti.upmc.edu; Mount Sinai Medical Center at 212.241.8035 or www.mountsinai.org

To share
For personal updates from me and Vinny Allegrini on our saga, send an e-mail to: vinny-subscribe@igc.topica.com. [please now visit the Subscribe tab on this website]

— Mark de Solla Price

Updated Updated 03/24/2003, but please check the sources links:

http://www.markandvinny.com/vinny/POZ.htm

 

 

 

http://www.metamorphics.com/vinny/POZ.htm

http://www.poz.com/archive/febmar2001/inside/liverlovers.html

Night On The Town Can Be Arranged

This is a local mirror of:

http://www.nytimes.com/1985/02/03/nyregion/night-on-the-town-can-be-arranged.html
by Alvin Klein “NIGHT ON THE TOWN CAN BE ARRANGED”
From The New York Times Published: February 3, 1985; retrieved: May 26, 2014

If possible, please reference the original URL above; for print download in PDF format


NYTimes_logo152x23

Published: February 3, 1985

NIGHT ON THE TOWN CAN BE ARRANGED

By Alvin Klein

FOR all the cultural and gastronomical treats served in the state, sometimes Connecticut residents want a night or a weekend ”on the town,” and that town is Manhattan.

And people who can afford it often want to be pampered – with choice theater tickets, restaurant reservations and a limousine in waiting.

With that in mind, Mark de Solla Price of New Haven formed Preview Guild, an entertainment consulting organization to perform such services for individuals or corporations.

Members of Preview Guild pay a $55 annual fee that entitles them to call the guild anytime with questions about shows or restaurants. They are charged $100 an hour for the time Mr. Price and his five-member staff spend arranging a night out for them, not including the price of events and meals. Nonmembers pay $150 an hour, in addition to the cost of the items, such as tickets and restaurant tabs.

Whatever the occasion, Mr. Price said he is prepared to coordinate it.

“We haven’t come up empty- handed yet,” he said.

Among the events Preview Guild has coordinated was a weekend for six members of a prosperous Texas family who were visiting New York and wanted to see the Thanksgiving Day Parade in style.

Mr. Price booked a private breakfast at a restaurant with a view of the festivities, complete with video monitors. Later in the day, a dinner of the traditional turkey and trimmings was delivered to the hotel where the family was staying. The entire weekend, which included tickets for a Broadway play, cost $10,000 – including the cost of hotel rooms and entertainment.

Mr. Price’s organization also receives a 10 percent commission from all arranged attractions, such as restaurants and booking agencies. or suppliers. such as florists.

Usually, an evening will consist of a client and his entourage dining out, attending a show, ballet or musical performance and then club-hopping.

Thus, Mr. Price is constantly in touch with Manhattan’s trendy restaurants and discotheques, as well as the more established ones. Such connections are necessary so that Preview Guild’s patrons can “get through the huge throngs, especially if they are not used to the New York hustle and bustle,” he said.

Mr. Price’s customers are “mostly corporations and the multi-millionaire crowd,” he said.

Coming up are a luncheon for group of investment bankers and a dinner party that will involve the presentation of a gold-plated elasticized stocking to the new president of an orthopedic-hosiery company.

“That won’t happen until March, and between now and then, I’ll be an expert on how to have a stocking gold- plated and mounted,” Mr. Price said.

Explaining the genesis of the Guild, he said, “In Connecticut, people were calling me up, asking for ideas and information about where to go and what to do. They needed a service.”

Consequently, Preview Guild, which started out as a service for Connecticut residents, has evolved into a more expansive information resource.

“Our customers want a concierge – and we’ll do it all smoothly: the tickets, the cars, the flowers,” he said.

At age 24, Mr. Price, who studied to be a chef, was an aspiring actor, worked at a computer concern in Stamford and co-produced the musical “Tallulah,” calls himself a “generalist,” a “host,” a hired “friend, yenta, Dutch uncle, adviser,” and a “matchmaker.”

“We match people up with what’s best for them,” he said.

Preview, the bimonthly newsletter published by Preview Guild, contains arts news and play and restaurant reviews.

In his lineage, Mr. Price numbers “a great-great-grandfather who built the St. James Theater in London and a great-great-uncle who was the composer of the Harrigan and Hart shows. He was Ned Harrigan’s father-in-law.” “Harrigan ‘n Hart,” a musical about the famous vaudeville team which originated at the Norma Terris Theater in Chester, opened on Broadway this month.

In the Manhattan loft from which Preview Guild emanates, Mr. Price holds Monday evening get-togethers for clients and members – a salon of sorts. “People tease me and say I aspire to be Gertrude Stein,” he said.