MarkdeSollaPrice.org

I would like to welcome all of you to the Buddhist Explorers Group. I really appreciate each of you braving the blizzard of 2009 and finding your way here to our new venue at The Lesbian, Gay, Bisexual and Transgender Community Center. Our Buddhist Explorers Group has been meeting for about fifteen years across town. For those who might not know the Center, our new home has been such vital part of the community for twenty-six years this month. I’m really excited about our future here and I personally am very grateful that Orie Urami, could make room for our program with less than a week’s notice.

We will begin promptly at one o’clock and end promptly at two. We will start with an introduction and explanation, then the meditation for about 10 minutes followed by a “Dharma talk” or teaching. Most months these talks are by invited guest teachers – today, you’ve got me. We’ll wrap up with some time where you can share your questions and comments.

My name is Mark de Solla Price and I’m one of the lay leaders of our Buddhist Explorers Group. I am also a beginning student of Soto Zen Buddhism. In addition to being a Buddhist, I also consider myself to be both an atheist and a Unitarian Universalist. I’ll talk a little more about theology and ethical philosophy a little later after the meditation.

 Mark and Vinny Holiday Letter 2009

This year’s holiday letter is also on-line at MarkandVinny.com/Holiday2009 where it is probably more fun to read electronically with links and photos, our various writings, videos and more. Although we’ve published newsletters and blogs since 1995 when Mark wrote his book “Living Positively in a World with HIV/AIDS”, this year we’ve reconnected with friends and relatives with social networking and community building tools like Facebook and Geni (genealogy). We are also moving all our website content over from old, manual systems to a really cool (and disabilities friendly) website built with Joomla, Gallery and iPhone.
 
Thanksgiving is the third anniversary of Mark having to go out on disability. Last year we wrote “in December 2007, Mark completed a very difficult yearlong successful treatment for hepatitis C. Thankfully, he became one of the lucky few to be effectively cured. Unfortunately, in the process it put a lot of stress on his various underlying medical conditions caused by living with (and treating) HIV for 25 years.” This is all still true, but it is now 26+ years of wear and tear with HIV. Although last year’s problems mostly got patched up, in addition to chronic fatigue, this year Mark has been dealing with type II diabetes, lower back degeneration (requiring lumbar epidural steroid injections, ablation surgeries, physical therapy with ongoing oxycodone pain management) and more vascular and leg problems with even more physical therapy.
 
By the end of 2009, in this year alone, Mark and Vinny will have together taken 21,168 pills, 1,460 injections or transdermals, and swallowed 2,190 oral solutions (with a pharmacy retail cost of $108,000) and we have gone to 119 doctor or therapist appointments in ‘09. Luckily, it’s mostly covered by our private insurance that costs $28,383.96 per year (up until now paid by NY State, but the new budget is unclear).
 
Unfortunately, this sort of early aging and multiple systems failures are quite common in folks who have lived with HIV/AIDS for decades. Every year with HIV can be like two or three years without. Mark will turn 50 in May 2010 (hopefully), but some of his body parts act like they are already 80. David France wrote a great feature story in New York Magazine 11/1/2009 about just this sort of thing “Another Kind of AIDS Crisis: A striking number of HIV patients are living longer but getting older faster-showing early signs of dementia and bone weakness usually seen in the elderly.” This is important to read, and it’s on-line.
 
Vinny has been increasingly perky and narcoleptic. The narcolepsy means time getting stuck like the tin man in Wizard of Oz or unexpectedly facedown into his soup. The extra perky time has allowed Vinny to take weekend trips with family and friends and enjoy cooking more at home. He has joined the SAGE Choir (mostly gay seniors) and has volunteered with the successful campaign to reelect NYC Mayor Michael Bloomberg. The later being a divisive issue with many of our liberal, democrat friends who see Mayor Mike just as a Republican Billionaire. Read Mark’s Testimony at Public Hearing on NYC Term Limits Legislation.
 
Both Vinny and Mark have found increasing comfort and fulfillment in both Unitarian Universalist activism and compassion in conjunction with Buddhist practice and teaching. We’re spending a lot less time at Community Church of NY UU, and have become ethical and spiritual community bumblebees journeying between Village Zeno (Soto Zen Buddhist), All Souls NY UU, First Brooklyn UU, QueerDharma, Dharma Punx, Manhattan Won Buddhists, and even Judson Memorial Church and Middle Collegiate Church (they are liberal Christian and we aren’t Christians). We’re also spending more time involved with programs at The Lesbian, Gay, Bisexual & Transgender Community Center and Gay Men's Health Crisis (GMHC), And yes, Mark still considers himself to be an Atheist although he’s also a card-carrying ordained interfaith minister (for officiating at weddings and funerals); Vinny believes in a God, but just isn’t a Christian anymore.
 
Mark’s passion for writing has returned, although pain management and chronic extreme fatigue keep getting in the way of getting much done on the new book he started last year. He has been able to update the website and do two magazine pieces this year: one for POZ Magazine on the successful management of his diabetes by injecting Gila Monster Spit (Byetta™) twice daily and one for Village Zendo Journal that’s about personal narrative and compassion entitled “Avalokitesvara's Missing Arm”. Mark will also be giving a public dharma talk (sermon) on “An Introduction to Buddhist Practice for Unitarian Universalists” on December 20, 2009 from 1-2 PM for the Buddhist Explorers Group (New York City) in the Chapel of Peace at Community Church of New York Unitarian Universalist. Everyone is welcome (see the website for details). The text and audio will be available afterward on our website.
 
Back in the early 1980s, when Mark worked for Studio 54 and the Palladium and also produced musical theater, he was one of a few thousand members of “The Saint” an over-the-top private gay dance nightclub. It was a sort of country club for urban gay men in the Disco era. It cost an unheard of $4.5 million and I doubt that its architectural and technologically brilliant design will ever be equaled. It provided a camera-free and safe place for gay men to party and play in a world where it could be career ending to be seen doing so. It filled a unique space in time, opening a decade after gay nightclubs first became legal in NY, but when such privacy was still necessary. When it closed in 1988, the gay community (and especially The Saint membership) had been decimated by AIDS and stigma. There was no party left. This year, there were two “alumni dance reunions.” It was magic to spend time under a disco ball with a few old friends who remembered me when I was young and HIV-free. Some looked like now-grey-haired Calvin Klein underwear gods; others like retirement home residents; some sober; some clearly a mess. And many like me, fellow injured veterans of the AIDS war, remembering the magical times and all too many ghosts.
 
This autumn, our family faced some life challenges: Vinny’s Aunt Eleanor Mill (1927 - 2008), the widely syndicated liberal newspaper op-ed cartoonist, died. Mark’s sister Linda’s daughter, Beckie, became a single mother with her daughter Adriana; and Vinny sister Maria’s daughter, Melanie, had a second child that was stillborn. Her first son Gabriel just turned three and is a joy. Her husband Steven is about to be deployed to Afghanistan with the CT Army National Guard 102nd Infantry; his first deployment was to Iraq.
 
Unlike many of our friends, fellow UUs and fellow Buddhists, we’re not pacifists. This is also why we’ve been so especially active this year in supporting a campaign for a US Department of Peace and the newly unveiled (11/12/09) Charter for Compassion (please go to the website add your name in support), as well as our continuing efforts with the Earth Charter, ACLU and the Natural Resources Defense Council. Mark’s mother Ellen grew up as a resistance fighter in Nazi-occupied Denmark. As children we learned that sometimes there are great evils in the world where, as a last resort, violent opposition, even lethal force, can be required. But also growing up in the UN community (Mark’s father was with UNESCO in addition to being a Yale professor), we learned that violence should only be a very last resort, and that non-violent conflict resolution, such as diplomacy and mediation (Mark is a court-trained mediator) need to be primary.
 
Like so many others, this has been an especially difficult year for us financially. For us, it’s been probably the most challenging since Vinny went into home hospice care in 2001. We want to thank you all for the incredible support we’ve received from our family and friends. We continue to welcome your donations of money and time. You can donate electronically at MarkandVinny.com/donate. Donations will show as being to "Mark and Vinny Foundation" but sorry, they it is NOT tax deductable.

You can also mail a check to our address:

Mark de Solla Price and/or Vinny Allegrini
Mark and Vinny Foundation
235 West 4th Street # 2 R
New York, NY 10014-2658

With our physical challenges, we have all sorts of household chores that could really benefit from the help of an able-bodied person for a few hours. We’d love to socialize while we put you to work ;-)

 
Please visit our website www.MarkandVinny.com and/or Facebook for updates, photos and more…
 
 • • •
 
The Charter for Compassion

The principle of compassion lies at the heart of all religious, ethical and spiritual traditions, calling us always to treat all others as we wish to be treated ourselves. Compassion impels us to work tirelessly to alleviate the suffering of our fellow creatures, to dethrone ourselves from the centre of our world and put another there, and to honour the inviolable sanctity of every single human being, treating everybody, without exception, with absolute justice, equity and respect.

It is also necessary in both public and private life to refrain consistently and empathically from inflicting pain. To act
or speak violently out of spite, chauvinism, or self-interest, to impoverish, exploit or deny basic rights to anybody, and to incite hatred by denigrating others—even our enemies—is a denial of our common humanity. We acknowledge that we have failed to live compassionately and that some have even increased the sum of human misery in the name of religion.

We therefore call upon all men and women ~ to restore compassion to the centre of morality and religion ~ to return to the ancient principle that any interpretation of scripture that breeds violence, hatred or disdain is illegitimate ~ to ensure that youth are given accurate and respectful information about other traditions, religions and cultures ~ to encourage a positive appreciation of cultural and religious diversity ~ to cultivate an informed empathy with the suffering of all human beings—even those regarded as enemies.

We urgently need to make compassion a clear, luminous and dynamic force in our polarized world. Rooted in a principled determination to transcend selfishness, compassion can break down political, dogmatic, ideological and religious boundaries. Born of our deep interdependence, compassion is essential to human relationships and to a fulfilled humanity. It is the path to enlightenment, and indispensible to the creation of a just economy and a peaceful global community.

CharterForCompassion.org
 

For me, who we are as human beings are defined by the stories we choose in our lives. These narratives weave the fabric of our existence. They define who we are; they shape how we are growing; they are how we will be remembered. They illustrate our values and priorities. They give us perspective and meaning and define our purpose and place in the universe. They can make us laugh and they create the bonds with our fellow travelers on this life journey.

Our narratives include our own autobiography, our memoir, and our family legends. They are more than a true record of history, because sometimes objective details can get in the way of painting the larger picture that reveals the important truths. But the majority of our narrative are stories, myths, allegories, parables, morality tales that are important to us, and how we choose to tell these stories.

I have my own lifetime adventures and family legends, but I also tell the tales of civil rights battles, scientific and artistic achievements and philosophical journeys. As a writer, I am an avid reader and love story-telling in all media. Some important spiritual narratives in my life come from stories like The Wizard of Oz, Winnie the Pooh, Star Wars and Harry Potter.

Taoist stories have long been an important part of my narrative toolbox, and now as a very new student of Zen Buddhism with Roshi Enkyo O'Hara at Village Zendo, I’m learning a whole new perspective and dimension. I think of enlightenment as a direction, not a destination. For me, it’s like health or happiness. One doesn’t really ever become “completely healthy” but through practice, one can become healthier, or happier, or more enlightened.

Mark and Vinny's Three Marriages (to each other)

We met on June 16, 1993, which is the anniversary date we celebrate (so it is 16+ years and counting), but there are also three more marriages...

(top to bottom right) Our First Wedding Invitation (9/3/1993) with a nice congratulatory note from President Bill and Hillary Clinton; Certificate of Marriage (making it fully legal; our third wedding at Unitarian Universalist Meeting House of Provincetown, MA 9/16/2005); Renewal of Vows (we count this as our "Second Wedding") was officiated by a Catholic priest, Father Cesar Espinoda on 11/13/2003.

(top to bottom left) Mark and Vinny as a wedding cake decoration (made by Mark's sister, Linda Demichele for our first wedding); Wedding "Ketubah" (a Jewish tradition) with our vows, officiated by Rabbi Charles Lippman and signed under the stewardship by all 125 wedding guests (a Quaker idea); the official blessing of Pope John Paul II on our fifth wedding anniversary.

(top center) The tenth aniversary cover of POZ Magazine (May 2004), by Spencer Tunick, which we're both part of, and which is the subject of the HBO documentary "Positively Naked", where we are also prominently featured.

All the frames are made by Mark's brother, Jeff Price from The Artists' Market in Norwalk, CT.

Kombucha Tea to...Gila Monster Spit?

by Mark de Solla Price

POZ Magazine July / August 2009

In the early days of AIDS, my friends and I searched desperately for treatments. We tried some pretty weird stuff, like Japanese kombucha mushroom tea. Then HIV meds appeared (and worked), and I grew accustomed to taking more traditional treatments in pills and shots.

But now, 26 years into life with HIV/AIDS, I have a slew of other conditions—including, most recently, diabetes. My damaged liver rules out various oral diabetes meds, so I inject a new drug, Byetta (exenatide). Doing background reading, I was transported back to those early days of HIV treatments with odd names and origins: Byetta is a synthetic form of the saliva of the venomous Gila monster—a protein in the lizard’s spit helps control blood sugar. Though recent FDA reports alarmingly link Byetta to cases of pancreatitis, it seems to work for me. Gotta love that lizard.

If you notice this website looking odd, it's because I'm moving the content over from an old, manual system to a really cool "Joomla/CiviCRM" based website. This also means that there are two separate photo galleries [the old one here, and the new one here], for the time being.

If you'd like to go back to the old site follow the link to http://markandvinny.com/original.html

Vinny and I have personally become inspired by the Bumblebee symbol on many levels. Perhaps you have noticed that we have taken to wearing a small 1½" golden Bumblebee pin, shown to the right.

The most visible part of most of every person's identities are who we are as individuals and then secondarily, who we are as members of our family, our circle of friends, our congregations and our larger community.

Of course our individual identity is a vitally important role, but there is another equally vital role: the role of the Bumblebee or Faithful Community Traveler.

The Bumblebee travels between various groups and communities and provides the cross-pollination. The interconnected tissue of life-force that actually creates the interdependent web of all existence, of which we are a part.

In the faith communities and the social justice communities, the “bumblebees” are those among us who travel between the campaigns, groups and congregations -- those of faith and those of no faith -- sharing ideas and passion. We pollinate with love and that is what makes our global metaphorical garden thrive. For Napoleon, the bee was a symbol of industry and hard work needed to build a great nation. Today, that symbol is even more urgently needed to heal and rebuild the planet.

Our twenty first century cultural view of humans in the Western World focuses on the value of the individual and of personal freedom. The Bumblebee’s world is one of community and collaboration. It’s no coincidence that there is a catastrophic decline in the world bee population -- today there are something like one-third the number of bees that there were a only a decade ago.

We all need to support our bees of all sorts – faithful bumblebees included!

You can purchase your own Bumblebee Pin through Amazon.com by clicking here and we'll even get a few pennies on the transaction.

On Christmas Eve my doctor called me with my latest diagnosis: I now also have Type 2 Diabetes. Going from an active life and 3-days-a-week at the gym to spending two years home-bound probably helped speed this genetic pre-disposition along.

Unfortunately, all of the usual oral diabetes medications are metabolized in the liver. Although I remain Hepatitis C undetectable viral load 64-weeks after treatment (yea!) my liver functions are still "wacky" from many factors including non-alcoholic fatty liver disease (NAFLD).

Luckily, there is a relatively new injectable diabetes medication drug exenatide (marketed as Byetta by Amylin Pharmaceuticals/Eli Lilly and Company) and for me it has been a wonder drug. After 90-days, my diabetes is well maintained and I've lost 15-pounds (of the 40-pounds I gained since starting Pegasys).

In my appointment with Marilyn Tucker-Viselli, my Dietician/Nutritionist, I proudly showed off the progress I've made on the graph of my glucose levels — using my LifeScan OneTouch Ultra2 Blood Glucose Meter (Johnson & Johnson) connected by USB cable to my Apple MacBook and then to the HealthEngage website.

Marilyn told me that Byetta is made from synthetic Gila Monster's saliva. Yup, I shoot-up twice each day with Gila Monster Spit, and I couldn't be happier to benefit from my new cold-blooded friend, pictured to the right.

On a spiritual level, it makes me realize just how interdependent I am with the web of all existence of which we are a part. How many other vital drugs are waiting in similarly unlikely species that we might loose forever as we endanger our planet.

It's not just that we might need what these creatures have to offer, they are part of who were are as living beings. I read recently that "Scientists estimate that 90 percent of the cells contained in the human body belong to nonhuman organisms - mostly bacteria, but also a smattering of fungi and other eensy entities. Some 100 trillion microbes nestle in niches from our teeth to our toes." (Colin Nickerson/The Boston Globe, February 25, 2008)

January 31, 2009 (An open letter)

Dear Community Church of New York Unitarian Universalist,

I believe that it is essential to have an empowered, effective and engaged Board of Trustees representing the congregation. The actions leading up to and at the Congregational Annual Meeting on January 25, have, I believe, undermined this and have made it clear to me that it will be impossible for me to fulfill my legal and fiduciary responsibilities as I see them (please see more detail below).

Therefore, at the Special Board Meeting immediately after the Annual Meeting, I declined reelection as Board Chair and resigned from my various volunteer leadership positions serving on the Board of Trustees, the Strategic Planning and Congregational Self-Assessment Team, and from the Communications Committee (which I also chaired).

For now, I will retain my congregational membership and continue to serve on the Ethelwyn Doolittle Justice and Outreach Fund Committee and as a member of the Anti-Racism Committee. I continue to support the Unitarian Universalist denomination and will continue my justice making activism as well has pursuing my spiritual path as a [Zen Buddhist,] Humanist, Pantheist, and Atheist both at Community Church and at other venues, including the other New York City Unitarian Universalist congregations.

Some have suggested that after this very difficult and divisive period, we need to move on, support our minister, and begin healing. I think that this would be skipping a vital step and would be unproductive. Just as one must properly clean out a wound before bandaging it up to prevent that wound from becoming infected and festering over time, I would suggest that it is important to look at the underlying causes of this conflict. We skipped that step five years ago, and suffered the consequences.

Although some of the conflict was caused by poor process and falling short of our covenant to always “treat each other with kindness and respect” – a failing on all sides – I think a larger component were differing expectations on how we agree to work together and how we “do church.”

Just over a year ago (January 6, 2008) UUA President Rev. William Sinkford said to me “There are no solo acts in our faith work, everything we do features an amazing ensemble team cast.” That's simply not true at Community Church.

Rev. Bruce Southworth is a solo act. He's like Barbra Streisand, Jay Leno, and Michael Phelps. Community Church has a history of solo acts with John Haynes Holmes and Donald Harrington – perhaps it’s in the DNA of what it means to be Community Church of New York UU.

Ensemble Ministry (I don't use the term “shared ministry” because that means such different things to different people) can be compared to a Jazz ensemble, a Broadway Musical such as "A Chorus Line", a symphony orchestra, or say "Saturday Night Live" or "The New York Yankees" in good years. No one leader, just a team effort.

Vinny and I quite literally won the lottery this week and we got tickets from Time Warner Cable to watch the Presidential Inauguration of Barack Obama telecast at the legendary Apollo Theater in Harlem. Since we weren't physically up for going to Washington, DC (not that we were invited), this is ideal venue that meets our physical limitations and our spiritual effervesce. For this exciting, historic event and we can't think of a better community to celebrate not just the arrival of Barack Obama in the White House but also for the beginning of a new era of civic engagement!