June 2007 Archives

First of all, I’m overwhelmed by the positive feedback, e-mails and cards I’ve gotten from my audience (both live and on the internet) for my the Pride 2007 speech that I gave this last weekend. If you’ve come looking to read that speech, you can either scroll down to the next blog entry or follow this URL.

Today I give myself Pegasys shot number 25, so I’ve just past the half-way point in my 48-week Pegasys/Ribavirin treatment. Both my 12-week and 24-week hepatitis C viral load was has been undetectable, which means that the treatment is an unqualified, total success. That’s a wonderful but rare outcome for folks like me with hepatitis C genotype 1a/1b.

Successfully battling the hepatitis C has come at a pretty high cost, though. My t-cells have plummeting to 151 (my all-time low, where they seem to be staying) but at least my HIV viral load remains undetectable too. I'm also now on Bactrim to ward off Pneumocyctis Pneumonia (PCP).

Each weekly shot incapacitates me for a good four-plus days at a time, so I only have two really human days each week.

In June, my muscle aches, pains and spasms have gotten a lot worse. These are the direct effect of the anti-virus fighting of the regime. Think of how your body aches when you have the flu. The muscles (and skin) are the immune system’s battleground against viruses.

I’ve always had really muscular calves and thighs. Great as a gay man in New York City. Not so good recently -- the bigger the muscle, the more it can hurt. On those bad nights each week, I’d use an electric massager on my leg muscles, take a few Flexeril (a muscle relaxants) and then soak in one or two hot baths during the night. I’ve switched to Skelaxin, which is a new and really expensive drug (both to my insurance company and to me with the $50 co-pay), but it’s working for now, which makes all the difference.

Two weeks ago my doctor sent me for urgent tests in the hospital to figure out why my right leg developed a vascular bump the size of cherry tomato which hadn’t been there two weeks before. It’s not a blood clot, so we’ll worry about fixing it after the Pegasys 48-weeks are over.

This week, I went in for a tongue biopsy (and culture) to figure out why some of my taste buds are the size of small capers or large grains of rice. No word yet. It may well be the same direct effect of Pegasys, just like the skin rash/hives I used to get an now treat with lots of antihistamine before and after each shot.

I always give myself my Pegasys injection on Tuesday at bedtime, but due to some uncharacteristically poor planning on my part, coupled with 90+ degree weather in New York City (32 degrees Celsius), which slows the shipping and delivery of this multi-thousand dollar refrigerated package of four syringes, I had to wait until tonight, Wednesday night.

Medically, being a day late with the injection once every few months isn’t ideal, but certainly isn’t a crisis either.

From my point of view, getting a whole extra good day is major.

I need to schedule my whole life in my Mondays and Tuesdays. Dinner with friends, long chats on the phone, doctors appointments, working out at the gym, grocery shopping and household chores, filling out the endless medical paperwork, paying bills, and e-mailing friends, posting to this blog. It all has to happen in those two days. The other five days, I often don’t answer the phone, check my e-mail or do much of anything. My week's worth of life compressed into two days each week.

Today was like found money. An unplanned, EXTRA Good Day. Vinny happened to be away for a couple of days visiting his sister in Connecticut, I could do ANYTHING. Well, with decidedly limited physical stamina, even more limited finances, a knee-brace (to stop the vascular bump from getting worse), and 90 degrees Fahrenheit (32 degrees Celsius) with 75% humidity, perhaps I could do SOMETHING special.

As you may have guessed from the large image to the right, aside from being able to write this blog entry, I went to an afternoon showing of Michael Moore’s new film Sicko, which opens everywhere else on June 29, but opened a week early in New York.

As a lefty-liberal, I like Michael Moore’s previous work (Fahrenheit 9/11, Bowling for Columbine and the TV series The Awful Truth). More importantly, I think regardless of if you love him or hate him, Michael Moore’s work promotes a controversy that makes people think and talk and not just blindly support their side. Sicko isn’t partisan and even historical Moore-bashers like FOX News have praised this film.

I found Sicko an incredibly moving film. I urge everyone to see it!

The audience I saw it with (an afternoon show near Lincoln Center) audibly laughed, cheered, gasped, wept (you could really hear the sobs) and we all gave a resounding applause at the end, the way you would for a live show. They even waited silently until the very end of the credits. Partially because they wanted to read about what we just saw. And partially because we all needed a few minutes to recover before returning to the world outside the movie.

After I left the theater, I needed to go for a long walk in Central Park, down Writer’s Walk to the Great Mall to Belvedere Fountain. It one of Vinny and my favorite walks. These days it always reminds me of Angels in America, both the play and HBO movie.

How did this great country, the richest and most powerful nation the earth has ever known, end up with such a broken health care system? So far from Universal Health Care, that is considered to be a basic human right in all the rest of the developed world. Of course, I don’t really mean “how did it happen?” but rather “how can we fix this?”

As catastrophically broken as the system is, would it even be possible to federalize all the hospitals, doctors and rest of the health care system? What happens to the Big Pharmaceutical companies? Big Insurance companies? Can we close them ALL overnight like we closed the bars, breweries and distilleries during the prohibition of alcoholic beverages in the US from 1920 to 1933?

I WOULD like to think we can change things before it’s too late – I am gay and positive, after all

The more burned out side of me wonders if that Vacation to London that Vinny keeps promising me at the end of this whole treatment year shouldn’t become our Emigration to England instead.

How much of our daily battles would just go away living under socialized medicine, not to mention legal recognition of being a same-sex couple.

In my case, it might even be considered to be repatriation rather than emigration. Both parents and both siblings were British subjects when I was born in New Haven, Connecticut. I have both a British and an American birth certificate. As a child, I had to travel on a British passport, as being an American was too dangerous in many parts of the world – just like it is today.

I’m probably too much a life-long New Yorker to ever leave. Besides, our apartment is rent stabled in a national landmark neighborhood.

I guess I’ll just have to stay content as an expatriate having scones at Tea and Sympathy and ordering my British TV shows on DVD from Amazon.co.uk that only play on a special UK-only DVD unit.

It’s worth it, though. The best show on TV isn’t available here in the US. It’s the BBC dark and sexy adult science fiction Torchwood (a spin-off from the new Doctor Who) stars the out gay hunk and Broadway singer John Barrowman as Captain Jack Harkness – he’s the world’s only main-stream polysexual superhero (see right).

After I posted this blog entry, I got an e-mail that Torchwood is coming to the US on BBC America this September. It gives me hope for the USA in twenty-first century!

[Here is the text of Mark’s remarks for Pride 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 if I’m 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.

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!

This past weekend marked the fourteenth anniversary of the day in 1993 when Vinny and I met and were randomly assigned to work together at a Marianne Williamson HIV support group in New York City.

And those 14 years together were lived with AIDS, so there should be a multiplier, like there is for dog years. Although we've both had to face so many life-and-death obstacles which at the time really sucked, being told that we really don't have too much more time alive together has made us seize the day and take that extra effort to makes those moments special. And all those quality moments add up to lots of happy years of lives well lived.

Hell, Vinny lived for four years with home hospice care and "only weeks to live" and still isn't dead yet either. Taking turns at being caregiver helps, but of course there are those times when we both need to be taken care of, and Troika does the best she can (being a dog and all).

Actually, when one of us is sick, Troika really does act like a mother caring for a sick puppy with licks on what hurts and snuggling up or standing guard nearby in her Sphinx-like guard posture. Unfortunately, being on Pegasys/Ribavirin means that Troika spends altogether too many days staying close by me.

In 1995, we had a big wedding with 125 guests in the garden of my brother's Wilton, CT home and were married by my brother's Rabbi, Chuck Lippman, who insisted that he wouldn't do a "civil union" ceremony, only a wedding. Pretty revolutionary for those days.

Vinny and I wrote our vows together in Strawburry Fields in Central Park and had them made into a wedding Ketubah or contract that all our family, friends and other wedding guests signed. In the Quaker tradition that a couple isn't married under the authority of a church or state, but under the care and stewardship of those attending. This seemed particularly appropriate for a gay wedding in 1995.

We even got a congratulatory note from note from President & Mrs. Clinton

In 2000 I had made the required small donation to the Vatican to purchase a blessing. I expected to be turned down, so I could protest. Instead we got a hand-calligraphied blessing on our fifth anniversary from Pope John Paul II.

You can see photos of all this stuff at markandvinny.com/Wedding

In 2003, after two years of hospice care for Vinny, we renewed our vows with the hospice champlin, who happend to be a Catholic Priest, Father Cesar Espinoda.

Finally, in 2005, we got married legally in Provienceton, MA at the Universalist Meeting House by Rev. Alison Hyder.

With all those multi-cultural marriages and aniversaries, you can see why we choose to celebrate the day we met. Vinny's said that he won't marry me again until we can do it in a way that's Federally legal

The photo above is Mark (left), Troika (middle) and Vinny (right) with 15 Calla Lilies (my favorite flower, 14 + 1 to grown on). The painting behind us is my Great-Great-Grandfather, Benjamin de Solla (1816 - 1894) who was a Professor of Music at the Guild Hall in London.