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…
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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.