Communing with Zorba

Angela visited me in Bloomington in the summer of 1994. One night we rented two quintessential Greek movies: The Last Temptation of Christ, and Zorba the Greek. Both were originally books by Nikos Kazantzakis, the definitive modern Greek author. We wanted to...well, you know...get in touch with our Greekness. Or something like that.

In one scene, on her deathbed is the rich old lady of the poverty-stricken island that the earthy Zorba calls home. Zorba, and the Englishman he is guiding on the latter's visit to Greece, are standing around the lady's room, helpless to do anything. The entire island is surrounding the house outside, waiting for news. Finally the old lady breathes her last. Word
goes out to the crowd. The next thing you hear is a high-pitched keening sound, like the Furies are about to attack. Instead, in pour dozens of <>, little old ladies in headscarves, probably widows. They are screaming at the top of their lungs. Desperately poor, they seize everything that isn't bolted down, until the place is picked clean. It is hard to tell whether you are supposed to be sympathetic to the old ladies or appalled by them.

Angela and I looked at each other, as helplessly as Anthony Quinn looked at Alan Bates. Holy cow, I said. Kazantzakis doesn't forgive *anybody.* We're all guilty, at least in his world. Wow. We were really impressed with the power of his narrative style, and we could see from both movies why Kazantzakis was so renowned.

I don't know whether that made us any more Greek, though. I think I'm going to go rent it again.


Remembering Julie Kurnitz

Julie Kurnitz was someone Angela and I met at Marfan conferences. She was warm, gregarious and funny, someone who in the parlance of another era might be called "a real classy lady." She did an entire one-woman musical cabaret show about living with Marfan, and was always campaigning for you to be optimistic, to keep your chin up, to laugh about things. Since she was a comedienne who always wanted to knock 'em dead, she would often chair workshops at the conferences on using humor. I've been meaning to snag a copy of "Radio Days," the Woody Allen film in which she makes an appearance.

When Julie died in 2004, Angela and I were greatly saddened. Now I think about Julie and smile. Here's one reason why, a taken from a tribute page to her (whose link is below):

In a letter sent to a friend long ago, Julie wrote, "...and I hope the thought of me will (eventually) make you smile more often than not. Or even laugh. After all, that's what I always wanted - to make people laugh - no bad thing." And in her list of Humor and Creativity Quotes, she writes: "Life does not cease to be serious when people laugh any more than it ceases to be funny when people die." - George Bernard Shaw




What happened to her? (A few questions answered by Stephen)

Angela died on June 25, 2006 from complications due to Marfan syndrome. There was some confusion about why she apparently went so suddenly. It's helping to write about her, so I thought I'd tackle this thorny subject in case people were afraid to ask.

1. What is Marfan syndrome...is it catching?

No; it's not a disease that you get. Your'e born with it; it's a genetic disorder of the connective tissue. There's quite a bit to read at www.marfan.org under the link "About Marfan Syndrome," but the short of it is: people with it tend to have very slender, often quite tall builds. They also have a tendency to have inflexible aortas which are prone to dissecting or developing aneurysms, events which can be fatal.

2. Does it affect anyone else in Angela's family?

Yes. It affects me, Stephen. Angela and I were the first ever in our family line to be born with Marfan. Our brothers John and Gregory do not have it, nor do our parents or any other members of our extended family.

3. If there's no family history, how did you get it, then?

Marfan can develop spontaneously. Because we were first-generation Marfan siblings, the researchers at Johns Hopkins attempting to isolate the gene became interested in our case in 1982, when we were first diagnosed. Our family's genetic history contributed to the discovery of the gene where the mutation resulting in Marfan occurs.

It turns out that our father developed the mutation which was passed on to us. He does not have Marfan, nor does he express any symptoms; he simply was the carrier. The odds of the mutation occurring are approximately 1 in 10,000. Marfan is "autosomal dominant," meaning once the mutation occurs, there's a 50/50 chance that any child of a Marfan parent will develop Marfan. That's exactly what happened in our family: two of four kids developed Marfan.

4. Did Angela have a dissection of the aorta?

She did back in 1995; without her shrewd preparedness, we might have lost her 11 years earlier than we did. Because at the time she was living in a city (New York) with excellent medical facilities, and had lined up specialists in Marfan, when she felt a tearing in her chest, she went in to be checked. It was a Sunday morning at around 10:30; by 4:30 pm they were wheeling her into emergency surgery. She showed that the archetypal Marfan event was survivable, even overcomeable.

5. But was dissection the cause of death?

No. Angela's passing was not caused directly by aortic dissection; if anything, her aorta was successfully replaced with plastic grafts, in three surgeries over 11 years.

Some time during or after the second surgery (in April 2004), she contracted a fungal infection inside the second graft where it met the remainder of her native aorta. The fungal infection went undetected until the third surgery (in May 2006). It accelerated the dissection of various arteries, causing three or four other surgical procedures in 2006. The infection was likely the prime cause of death; by the time the problem was discovered, it was very likely too late to fight off the infection. Because Angela had apparently recovered very successfully from prior surgeries, most people, including me, simply expected her to recover from this round as well, which was why her passing was such a shock.

There's more detail on that subject, which might get covered in a later topic. (Should more detail be of interest to you sooner rather than later, please drop me a line and I'll explain as best I can.)

6. Should we be worried about you, Stephen?

I am certainly feeling a bit more fragile these days. But all the echocardiograms I have had show that my aorta has not dilated beyond the normal range. At my age, I am not expected to need open-heart surgery. (That will not stop me from getting regular echocardiograms, especially now.)

7. Why are you saying so much personal detail, Stephen? Aren't you concerned about privacy?

It is more important to me that other people know and learn from the experience of my sister and I. If her life is to mean anything, it should now certainly stand among other things for Marfan awareness. Angela left money in her unofficial will to the National Marfan Foundation.

So I can no longer stay reticent on the subject; with the passing of my sister due to Marfan, it's in my interest for as many people to know about Marfan as possible.

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Angela's Christmas gift to Isaac

For Christmas 2005, Angela's gift to her nephew Isaac was a small photo album with the capability to record a voice message on each page. Since Angela's untimely death, this album has become a special treasure in the Volan household.

The Christmas 2005 album

What went up first

It was hectic the first few days after we got the news. We didn't know what we're doing; we still don't. We're just trying to stay sane, and remember our sister in a way that's healthy. We decided some kind of tribute website was in order. Here you are.

John and I started the site by putting up a couple of pictures of Angela, followed by the obituary we wrote for the local newspapers, and the obituary written by Nell Andrew for the Art Department mailing list at the University of Chicago.

We also began with the eulogies given at the wake by myself and by John.

In the past couple of days we have added a letter of condolence from Angela's thesis advisor and mentor at the University of Chicago, Dr. Rob Nelson, and the first eulogy at the wake, given by her best friend Debbie Brzoska.


About this blog and her site

Angela Volan was many things to many people: beloved relative, brilliant colleague, great friend. Her sudden passing at the age of 35 has left us all bereft.

The site at volan.org is meant to celebrate her too-short life, to unite the many people she brought together, and most importantly, to share the many stories she sparked. This blog is meant to both update friends and family on new developments at the site, as well as a place for them to share their memories and insights. We strongly encourage you to leave comments here about any blog post, or about the volan.org website.

We have set up an email address for correspondence with our family: aboutangelavolan AT gmail DOT com. Please feel free to write us with your memories of Angela, or with any other questions or concerns you may have.

Our family wishes to thank everyone who has been so kind to us in our moment of grief.

The Volans
George & Helen
John, Carolyn & Isaac


Angela Maria Volan, 1970-2006

Angela Maria Volan, Ph.D., of Chicago, passed away in her sleep from complications due to Marfan syndrome, at her parents' home in Schererville, Indiana on Sunday, June 25, 2006, at the age of 35.

Angela was to begin her teaching career in the fall as a professor of Art History at the University of South Florida in Tampa, Florida. A Fulbright Scholar and an Onassis Scholar, she was completing a post-doctoral fellowship at Princeton University. She received her Ph.D. in 2005 from the University of Chicago, as well as her master's degree there in 1997. She earned her bachelor's degree at the University of Michigan in 1993. She was a 1988 graduate of Andrean High School in Merrillville, Indiana. She was born in Gary, Indiana in 1970.

Angela is survived by her parents, Dr. George and Helen Volan of Schererville; three brothers, John (Carolyn) Volan of Durham, New Hampshire, Stephen Volan of Bloomington, Indiana, and Gregory Volan of Chicago; one nephew, Isaac Volan of Durham, New Hampshire; and numerous loving aunts, uncles and cousins.

Funeral services will be held Thursday, June 29, 2006 at 11:00 a.m. directly at SS. Constantine & Helen Greek Orthodox Cathedral, 8000 Madison, Merrillville, Indiana, the Reverend Fathers Theodore Poteres and Evagoras Constantinides officiating. Burial to follow at Calumet Park Cemetery, Merrillville. A Trisagion prayer service will be held Wednesday evening at 7:00 p.m.

Friends may call at the Geisen Funeral Home, 7905 Broadway, Merrillville, on Wednesday, June 28 from 4 to 8 p.m.

Memorial donations may be made in memory of Angela M. Volan to: the St. Luke Orthodox Mission, 9825 Indianapolis Blvd., Highland, Indiana, 46322-2622; or to the National Marfan Foundation, 22 Manhasset Ave., Port Washington, New York, 14650.

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National Marfan Foundation