This corner is for quilt panels that have not yet been combined with others to make the enormous quilt squares (composed of eight panels, each of which is 3 feet by 6 feet). The squares are about as tall, when complete, as the height of two tall adults. They also have posters, photographs, exhibition panels, and other wonderful memorabilia of the Quilt’s many displays and journeys over the years, since 1987.

The collection of fire-proof filing cabinets forms the archives of the NAMES Project, as these contain the paperwork, letters, and any other items that family members, friends, and lovers have sent in along with their quilt panels over the years. I would love to work on the collection. Love.

You can also see the collection of vintage sewing machines that have been given to the woman who designs, compiles, and sews all of the panels into larger squares (I can’t remember her name at the moment). She has been with the Quilt since its inception–25 years now. Those tables are the exact size of the panel measurements, for ease in combining and working on them.

This one is blurry, unfortunately, but there is the main hall back into the shelves where the Quilt is stored. Squares are stacked and folded (by the way, not the best preservation technique) so that all 50,000+ can fit in this fairly limited warehouse space. A log is kept indicating when a square has been “checked out” of its place on the shelves, or when it is sent off as part of a display or exhibition. I can’t believe that what stretches for acres and acres when it is unfurled is all being stored down these modest aisles.

That’s us. I am also regularly floored when I think my image and our family’s words to Craig and his mom and sister have been in this collection for more than a decade already.  Our small, meaningful contribution to this important memorial is stored and shared along with the countless–millions–of other stories, memories, prayers, and words shared over the years.

The statement below our pictures reads:

Thank you Craig, Sharon, and Kim for your real-life lessons in courage, strength and family love. Our kids witnessed understanding and deep compassion through our friendship – a valuable lesson for life, for all.

]]> http://betheink.com/2012/01/where-the-quilt-is-kept/feed/ 0 http://betheink.com/2012/01/my-pop-art-series/ http://betheink.com/2012/01/my-pop-art-series/#comments Mon, 30 Jan 2012 19:03:42 +0000 Jcedens http://betheink.com/?p=1782 This is part of the Living Atlanta street art series that was done by local artists in 2011, but I have only recently discovered this piece, very close to my office at 34 Peachtree Street. I absolutely love it. So I played with it in Lightroom to my heart’s content, and this is the result. I can’t have enough versions of this picture, it seems.

What a powerful source of memory, of honoring those who we have lost to AIDS.

As I have written about a few times already , I have been exploring the many squares on the AIDS Memorial Quilt, and have been remembering especially two men who were important to my Mom, to our community, and to my perception and experience with the death tolls from AIDS. Almost as soon as I learned, via their website, that the Quilt is stored and the foundation headquartered here in Atlanta, I called, left a message, and asked to visit–especially to see the two squares I had been pouring over, Craig’s and Parnell’s.

Photos on Craig's quilt square, of Parnell Peterson (left) and Craig Koller, from Parnell's family

Richie, a veteran of the NAMES Project Foundation, called me back after the MLK holiday weekend, and I planned a visit for today. This morning I spent some time crying, touching the quilt, reading the many lovely words, poems, thoughts contributed to each of their squares, and learned more about these two men via the wonderful memorial that this Quilt provides. It provides a way to remember, in a very communal and large-scale way, yet allowing for quite private and personal time with those who are being remembered. Richie pulled up the information on these two squares, 2744 (Parnell’s) and 5508 (Craig’s), so I could see where they had traveled, where they had been requested, and where and when they were each on display.

I learned that the demographic who has been contributing the most new squares–they receive on average about 400 new squares each year–are nieces. Girls my age, who have memories, however clear or unclear, of their uncles who died while we were young, and who have now reached the age in which remembering them properly has been an important part of grieving, or becoming an adult, of understanding how this illness has devastated families. I am exactly that generation, that demographic, though I have to consider myself an honorary niece only.

I made a donation in honor of my parents, who have been caring, compassionate examples for my brothers and me, and in honor of Craig and Parnell, obviously, and for each of their families. The wonderful (small) staff gave me a book of some quilt squares, and a calendar I have already poured over several times. I felt so welcomed, and depending on how much longer I am in Atlanta, I want to help quilt squares together as they need me. Seeing a modest and hard-working organization and staff like that also reminds me that I am in the right field; non-profits, working to educate and engage the public, and ensuring that life has been well-spent by taking care of the issues that matter most.

Take a moment to drink in how enormous each panel of this quilt is. Each square is intentionally 3 feet by 6 feet, about the size of a human grave. I was not prepared for the commanding presence, and for how much more meaningful seeing each component up-close truly is.

That's me next to Craig's square

The portion my family contributed to Craig's square, which is on the bottom, in the very middle

Parnell McKenna Peterson's square (double-sized, like Craig's). The entire bottom is littered with lovely messages to him.

I especially enjoyed seeing all of the contributions made by people who loved each of them. Their lives and memories matter to many.

My mom, Craig, and some other of their high school friends here, also part of Craig's square. Craig is on the bottom left.

Parnell

Craig

Craig, in the center of his beautiful square. (Hazard of storing thousands of quilt squares, creases.)

The modest headquarters of the largest piece of community folk art in the world. The Quilt weighs 54 tons. They're all stored here.

Take-home goodies: book, calendar. There are very generous, wonderful people taking care of this quilt.

My family's little square on Craig's quilt square

I bring these up now because I have been thinking so much about the illness, the virus, the stigma, the massive too-little-too-late effort to stem its spread, and the continued work by scientists, doctors, activists, and others to find long-term resolution (if not a cure). I bring up these memories because it is curious to me why I should remember them both so clearly, I can picture the rooms, and where I was sitting. I don’t have similar memories learning about cancer (several types having affected my grandparents), or my mother’s heart rhythm disturbance, both of which affected my own life in much more direct ways.

There is just something that hurts so deeply when I think about it. Yet it is a feeling I have embraced, it is important to feel deeply on this earth, in this life, especially when I have my health and so many do not.

Two of my Mom’s high school friends, Craig Koller and Parnell Peterson, died of AIDS. Parnell, who I do not remember, died in 1991, at age 33. Craig died in 1997, at age 40. I remember visiting Craig and his mother and sister’s family in Murfreesboro, Tennessee in spring of 1997, and I knew at that point that he was sick (though I’m unsure if I knew what was making him sick).

It’s strange what I’ve been feeling recently, since finding the images of each Parnell and Craig’s quilt squares on the NAMES Project Foundation AIDS Memorial Quilt. I am going to see the quilt next week, and they have pulled these two squares for me to see. My family, my Mom, Dad and siblings, contributed a tiny portion to Craig’s square, at the request of his mother, and so we are part of a collage of love surrounding Craig’s image on his doubly-large square. I did not know this until very recently, as that is one part in my saga that I do not recall.

Square 05508, Craig Koller's portion is the bottom, middle. My family's photo-transfer contribution is third down on the right side panel along his square.

But since seeing these fuzzy images online, and trying desperately and ineffectively to zoom in enough to see both of their faces clearly, I have been experiencing what I can only say is deep grief– to the extent that I can understand it, which I know I cannot fully. I have not lost a parent, or a sibling, or a spouse or lover or very close friend to this illness– or even to any illness. I have not had, as a deep-feeling adult, any such loss from any tragedy or illness. And yet, I think of lives gone too early, of what Parnell might have liked to do in his life, and I sob. I cry, I get angry, I am sad. It’s usually in the car rides home, during my commutes. Certain songs, or lyrics, and thoughts, and prayers, and images either on the road or in my brain, and I am heaving again. I do not remember crying so deeply about something so big, over which I have no control, except when I read The Kite Runner, and spent a few nights in my room, on my bed, reading and sobbing for Afghanistan. (The whole thing, the whole place, every person in that country, which has seen so much. If you’ve read it, you understand the injustice and the pain and the violence that cannot be escaped, and the hatred that runs deep along ethnic lines.) Other than that, I have not cried so much over people I remember so little about, or in fact, if we look at the larger loss, of millions of lives taken by HIV/AIDS, of people whose stories I don’t know.

I find myself wishing deeply, searching in futility, to learn more about their lives–Parnell and Craig. I search for anything I can find on the internet, time and again, on Parnell. On Craig. I’ve looked at the cold, simple statement of their deaths on Ancestry.com’s death index about a hundred times. I long to know what Craig did for a living, what he liked to eat and watch, things beyond his illness and pain. I wonder what Parnell was doing in the 1980s, as a twenty-something as I am now, so sure that he has his whole life before him, as I feel now. Thirty-three is not so far away. Did he know anything about the disease, as it was spreading? The things I’ve been reading about, the “gay cancer” and the doctor’s fears, and the devastation it would bring to the huge steps the gay community had made in those years before, what did he think of it? Who were his friends, how did he share his diagnosis with them, with his family? I do know that his mother, Mary Peterson, seemed like an amazing, talented woman. My Mom vouched that it was so. I wish I could talk to her now.

How long did Craig live with HIV before it became AIDS? Where was he in the 1980s? I know he and Parnell both lived near San Francisco; were they the kind of high school friends who made sure to keep in touch? Who did he lose to this epidemic before he succumbed to it? One of the most heart-wrenching parts of the story of AIDS is the proximity, the high number of friends some people lost in those first decades, to the disease, as the latency period was so long and the specific communities affected were so defined. It breaks my heart, truly, to imagine the young men who died alone, and who were not given memorial services by their families because of a denial or unacceptable of their son’s sexuality. Doctors and nurses tell of miserable, terribly painful deaths some endured alone. No one to comfort them.

That is what makes me so happy about the AIDS memorial quilt. I pour into it so many hopes, that unknown names, that the memories of countless people who are remembered no where else have been stitched lovingly into these 91,000+ squares. The squares are all shaped to resemble coffins, which is a stark and essential reminder that these are lives, lost. People loved them, people rejected or hated some of them, but they all had lives, beliefs, love, careers and causes, before HIV/AIDS. Randy Shilts, in his book And the Band Played On, talks about how there was a very clear line, for every gay man, in their lives and experiences: there was life Before HIV/AIDS, and there was After. I was born into the world of After, the world as we know it from now on With AIDS. And as Stevie Nicks so eloquently says in “Landslide”–a song it is impossible to not cry to–time makes you older, children get older, I’m getting older too. Time makes us older, literally, but also, it makes us older with the heavy things it lays on our hearts. As an adult, I am brave and I accept uncertainty, but man, does the world scare me, overwhelm me.

I cannot on my own find a cure for HIV and AIDS. I am sad every day that I do not know more about the lives of the two men who were loving, caring friends of my Mom’s, whose generation (all three of them were born in 1957) was most directly hit with this unimaginably unforgivable and deadly disease. But I can love others, love those around me who might be different, but who are people all the same, like me, trying to survive in this big world, that has so much hate. I can also keep Craig and Parnell in my heart, grieve the loss of their lives, and keep their memory alive. I wish I could tell them I love them; I hope they know somehow that I do. 

And here I shall stop; I am sobbing again.

Its way of lessening the distance between artists, authors, and other people we admire is my absolute favorite reason for the micro-blogging social network. (A close second place is how it has changed the way I think in my own head. In pithy little statements on life and what’s occurring in mine.)

I have squealed in delight when a respected writer or journalist responds to me on Twitter. It’s like little brushes with fame, or relative fame, and with people whose work you greatly admire but that you would almost never meet in your entire life. Yet here, on Twitter, it’s like they are those living, breathing people, who pass their thoughts along into the Twitter-sphere like the rest of us.

The relationship between authors/writers and social networking is also changing our perception and idea of what exactly makes the writer/artist. And as the title of this post suggests (and the NYT article from which it came), the digital age is transforming the way we understand authorship. I, after all, am also a digital author, this website as my outlet for things that would only otherwise exist in my head or among my friends and family (who can only hear me ramble about some things so many times before tiring, understandably). This blog has changed the way I communicate with everyone around me, and so has Twitter. So it makes sense that it is doing the same thing to professional writers, authors, journalists, artists everywhere, best-sellers or no. Some authors become humorists on Twitter, as it becomes an outlet for personas they didn’t have an outlet for elsewhere. The internet is well-known to affect people’s actual or perceived personas. The fascinating New York Times article on authors tweeting is well worth your time:

At their best, social media democratize literature and demystify the writing process. As Suzanne Fischer tweets of following her favorite author, “It’s fascinating to learn what an unsettling & emotional process it is for her to write characters into the world.” When that mythic author comes down for a chat, she gets followers.

Some of my favorite people to follow on Twitter:

@patricox / Patrick Cox, reporter for PRI’s The World, and creator/host of The World in Words podcast on all things language.

@elizabethlittle / Author Elizabeth Little. She has the best sense of humor. I think we would be excellent real-life friends.

@jenny8lee / Jennifer 8. Lee: Journalist, freelancer, author, Chinese-American. Her real middle name is 8.

Photos by Yeondo Jung, in Seoul, South Korea

 Last weekend I watched Contagion, a recent Hollywood rendition of what would happen to the planet and its people if there was a massive, contagious disease that wreaked devastation and death, spreading so quickly and aggressively that its MO was “figuring us out faster than we can figure it out.” Characters race against time in the film, doctors at the CDC (including Kate Winslet and Marion Cotillard), and other health institutes around the world, traveling and researching to find out what caused this outbreak and how to solve it, immunize against it.

And what do we learn about humanity? We are not nearly as orderly and respective to each other during crisis as the model Japanese refugees were during last year’s triple-crisis earthquake, tsunami, and nuclear disaster. In fact, we panic, we flee, we become violent and kill each other to find food, to secure our own families. The scenes that play out as the epidemic spreads (and as fear spreads even more quickly) are terrifying and thought-provoking. What if this actually happened? Would many of us fall not by the hand of the disease that threatens, but by the hands of our own neighbors, in the spirit of the outrageous moment in which we find ourselves?

It’s not Oscar-worthy, per se, but I found the theoretical situation enthralling–precisely because it was also horrifying. I would not want to live through this kind of awful moment for humanity. Us at our very worst.

It also made me think about the structure of our world, and a recent article in National Geographic about the future of our planet, and how cities can save us. I agree wholeheartedly, that, rather than the festering dirty urban spaces they have often been perceived as (and actualized as) in history, cities offer us a sustainable option for the survival of seven billion people (and an estimated nine billion by 2050), as people living in cities tread lightly on the earth: “Their roads, sewers, and power lines are shorter. Their apartments take less energy to heat and cool. Most important: they drive less.” Denser populations in cities have the added effect of lessening our use of remaining green space, forests, and natural areas and reservations. Humans and the earth alike need these green spaces an essential survival components–for our human psyche, and for the earth, literal survival.

As cities become more and more the agent of our sustainable survival, they should not all expand as Atlanta did. Sprawl and the massive expansion of suburbs have not helped or lowered our dependency on large amounts of energy. James Howard Kunstler, a critic of suburbia, called Atlanta “a pulsating slime mold,” a quotation that did manage to be included in the Nat Geo article, luckily for us Atlantans. But Atlanta is a perfect example of terrible teamwork among metropolitan counties, who could not agree on a transit system that stretched throughout the area, and so we are heavily, begrudgingly, seemingly irreversibly dependent on our clogged highways.

Theorists have had ideas and arguments for and against how we should design our cities for hundreds of years. Greenbelts surrounding cities were one proposed plan for stopping city growth, when it was perceived that urban centers that were too big would eat up all remaining space outside their centers. But as this set definitive borders to what would be considered the city, “greenbelts had the effect of pushing people farther out, sometimes absurdly far,” says Peter Hall in the article, a planner and historian at University College London.

Brisilia, the planned capital of Brazil, was designed for 500,000 people; two million more now live beyond the lake and park that were supposed to block the city’s expansion. When you  try to stop urban growth, it seems, you just amplify sprawl.

…Other government policies, such as subsidies for highways and home ownership, have [also] coaxed the suburbs outward.

The argument then, and the solution as well, is that you don’t try to stop city growth. You try to stop the suburban sprawl, and have your citizens living closer to where they work and play. What has been happening with more and more use and dependency on oil to fuel our cars and big, suburban houses in the United States is happening on an ever-greater level as China and India develop, and their citizens want the same ideas of the affluent, consumer life. As this trend quickens its pace, a solution becomes more important than ever. History has not always favored the teeming urban center. It has been seen as corrupting of the mind, dirty, disease-ridden, and a slew of other things. Which are valid claims, especially, rightfully, in the eighteenth and nineteenth centuries. But there’s a valid twenty-first century reevaluation and outlook:

Developing cities will inevitably expand, says [Shlomo Angel, an urban planning professor at New York University and Princeton]. Somewhere between the anarchy that prevails in many today and the utopianism that has often characterized urban planning lies a modest kind of planning that could make a big difference. It requires looking ahead decades, Angel says, and reserving land, before the city grows over it, for parks and a dense grid of public transit corridors. It starts with looking at growing cities in a positive way–not as diseases, but as concentrations of human energy to be organized and tapped. 

So we need to begin thinking about our cities as our saviors, and thinking about it seriously, even if, as I began this cheery post, we also risk the same things that have always been risky about cities: we’re all really close together, sharing buses, subways, hallways, all manner of public spaces. An event like the one in Contagion isn’t impossible, and cities are not the best places to stay if that did occur, as I was brutally reminded during the film. But Hollywood has not convinced me that the argument for cities isn’t worth our investment of time, thought, money, and lifestyle.

Henrietta Lacks. Her cells were massively important in the development of twentieth century medicine. You should read Skloot's book about her.

Almost without conscious thought, I have read three books in the last six months on medical history, all three enthralling, and with stunning casts of characters–doctors, researchers, patients, government and elected officials, journalists, insurance companies. We sit on the other end of the story, knowing what “happens” at the end of the sagas and what has evolved in the field of medicine and disease control, and this gives us an advantage on the people whose lives, discoveries, and decisions play out for us on the pages of history. We know which procedures will end badly, or which will prove miraculous cures, or which doctors and politicians will later be discredited or heralded as heroes.

It is almost the same way we look at medical practices now, imagining ourselves on the very cusp, the cutting edge of innovation, or medical breakthroughs, of cures and solutions without error. But we are humans, created procedures on solid research data, but apt to err all the same.  Shannon Brownlee, author of Overtreated: Why Too Much Medicine Is Making Us Sicker and Poorer, gets to just that point in how we view the medical field, some impenetrable, foolproof tower, and tribute to human medical achievement:

… We live in the age of science, after all. We think the difference between experimental and standard care is well-defined; that doctors adopt new medical advances on the basis of valid evidence; that new treatments represent improvement over the old. We look back at the history of medicine and its litter of discarded treatments with a sense of superiority, smug in our belief that superstition and ignorance have been banished from medicine. Until only a few generations ago, disease was thought to arise out of either an imbalance among the four humors or a contagion in the blood. Treatments were based on this faulty paradigm, and thus it seemed to follow, for example, that cutting a vein and letting the blood run out would rid the body of what ailed it and restore balance. Patients often did feel better after a bloodletting, or at least different, while the doctor could feel the satisfaction of having done what was right according to the prevailing conceptions of disease. We now know that bloodletting at best did nothing and at worst hastened death.

It is important, essential, to remember that we also lie within the timeline of medical history, as it unfolds and we learn more about disease, viruses, and the human body, and seek new methods of treating all three. The stories behind how we’ve gotten where we are now humble me, remind me of our fragility, our hubris, our good intentions–and not in an all-bad or all-good way. Modern medicine has improved our lives, given us the tools we need to protect ourselves from the things we can, saved the life of at least one person you know, and probably more than one.

Alleged "Patient Zero" Canada Air flight attendant Gaëtan Dugas, who is a complex and defiant character in Shilts's book.

Our medical past certainly belies the mistakes and hardships that can occur no matter how “developed” and wealthy a society may be. And it is good to be aware of our humanity, and our mistakes, so that we don’t go thinking too much of ourselves. We’re far from the end of the tale of human medical science and discovery.

Reading list:

Rebecca Skloot, The Immortal Life of Henrietta Lacks

Randy Shilts, And The Band Played On: Politics, People, and the AIDS Epidemic

Shannon Brownlee, Overtreated: Why Too Much Medicine Is Making Us Sicker and Poorer

Also, read a blog post about so-called “Patient Zero” of AIDS, Gaetan Dugas: “We all know the plague is coming”

It was my first time out of the country (besides an hour in Canada), and I was beyond excited. I had gotten my passport for this trip, and paid half of the $800 cost (split with my parents) with babysitting money. What I didn’t spend much money on was my digital camera, which would later be rejected by the student newspaper I worked for in college as being far too low of quality (at a whopping 3 mega pixels) to grace the pages of student-produced media. I bought the camera for the trip actually, and proceeded to play with the features, like sepia tone, which overran my France photo collection. Ben points out to me frequently (I know, Ben, I get it) that this is a dumb move, because you can always edit your photos to any kind of old sepia tone later, where as you cannot change it back to color after the fact. So, years later, many of these pictures exist, even in my memory, in their singular, sepia form.

But recently I went back and adjusted the white balance on many of them, which transformed them, becoming images of my journey that took on entirely new life, more than I had thought would be salvageable from these usually murky, low-resolution shots. I secretly love them all the more for being so low-tech. It’s like I was trying to edit them into vintage, when in fact, they already look that way.

These are some of my favorites from Paris. Gerardmer and Colmar posts to follow.

This is the abandoned carnival bit set up right across from the Eiffel Tower viewing point. It felt old.

I stayed on the bus to see the Tower, so my camera’s reflection in the window remains forevermore.

People-watching outside the Louvre, including the miles of park between it and the Champs-Élysées. Ladies, babies, boats, boys, and a wedding.

Paris from almost-the-top of the Eiffel Tower, and the graffiti-ed “Beware Pickpockets” sign in the elevator.

This was me, in Paris, only a few weeks after my 18th birthday

Chic lady and a Vogue Homme in Charles de Gaule Airport. I feel no one else likes this photo, but I do.