I am often drawn to artists who have experienced death and then use their work to process the loss.  Julie Williams is just such a person.  She is an Australian photo-artist, who in 2004 lost her partner.  In an effort to work through her grief, Williams began to visit familiar places in nature.  One spot she kept returning to, was a waterhole in the Hartley Valley.  It seemed that as a drought back in 2004 the valley ended, and the River Lett began to flow again, her grief also moved with it.  She picked up her camera and began to photograph the water, the light, and the movement.

In 1993, photographer Darcy Padilla met 19 year old Julie. At the time, Julie was living with her boyfriend Jack in a hotel with their 8 day old daughter. Both Julie and Jack were HIV positive. Through the next 18 years, Padilla photographed the life of Julie. The Julie Project is a collection of these photographs with some documents taken from Julie's life. Padilla intermittently narrates the photos with her experiences and conversations with Julie.

After leaving the abusive relationship she had with Jack, Julie wandered from hotel to hotel with her daughter Rachel. She had another child Tommy and lived in a shelter for some time. She eventually lost custody of both of her children when her live in boyfriend abused them. She had two more children who were taken away due to her testing positive for opiates.

In 2005 Julie was contacted by family who had been looking for her for years and she moved to Alaska. Her illness continued to progress and she had to be hospitalized.

In 2008, Julie gave birth to a fifth child, Elyssa, who she was allowed to keep custody of. She and her boyfriend Jason lived in a house with no running water or electricity.

Over the next two years, Julie's health worsened. She enrolled in hospice on Sept 7 and died Sept 27, 2010.

Through her 18 year photo documentary, Padilla wasn't just a casual observer to Julie's life. She became a close friend and spent a lot of time with her at the end of her life. Her photos are dramatic and at times gruesome and depressing. But they are a very real look at living in poverty with a life limiting illness. Below is a statement by Padilla about what motivated the Julie Project:

My initial motivation for Julie’s story was to document one woman’s struggle, to live with poverty and AIDS.

After losing custody of Rachael, Tommy, Jordan, Ryan and Jason Jr., it made me think about them. I wondered if Julie’s children would understand the depths of her poverty, the decision of their mother to give them up for adoption.

Julie’s children are going to be adults someday. Who are they going to ask about what happened? I want to be able to tell them her story in case Julie is not alive.

I do not think Julie has much time left.

The purpose of the project is to take the disparate arguments about welfare, poverty, family rights, AIDS, drug and sexual abuse by looking at one person’s life, Julie.

My hopes for the project is not to just tell her story for us to understand but for Rachael, Tommy, Jordan, Ryan, Zach, and Elyssa to hear, someday.

Julie’s story matters and should make a difference to us the viewer in our understanding of the fractured world that many poor people struggle to exist in.

As a friend said, "I realize this type of story plays out constantly in the world for many, many families. The pieces slip away or no one cares to remember the details. We see the summation of cause and effect in a homeless face on the street every day. It can be too complicated, uncomfortable and painful to ask why."

I hope you can’t stop thinking about Julie’s story, I hope it makes you feel. I hope it makes you look at the world differently.

Thanks to Lyle for sending me this link.

Ten years ago, Mark Hogancamp was attacked outside of a bar by 5 men. He was badly beaten and nearly died. It took 9 days for him to wake up after the attack and as a result Mark lost most of his memories and had severely impaired motor function. For his own therapy, physical as well as emotional, Mark created his own world which he calls Marwencol.

Marwencol is a fictional 1/6 scale WWII era Belgium town. The town's inhabitants are all dolls. Mark has created a doll for himself (named Hogie) and many of his family and friends are also represented. Mark poses the dolls in various scenes and then takes photos to tell the story. His storyline: Nazis, romance, torture, a time traveling witch (?).

His dolls and props are made to be very realistic. To enhance this effect, Mark actually places his characters in his model jeep and pulls it along side him when he takes a walk, giving them authentic wear and tear.

A local photographer saw Mark walking with his jeep and asked Mark what he was doing. Mark then shared his photographs. This discovery has led to a lot of publicity for Marwencol, including an art show in New York and now a documentary. Unfortunately the documentary is only playing in a select few cities nation wide and Kansas City is not one of them. But the trailer gives you a good feel (below).



So my question, after looking through some of the Marwencol photos is, when does this therapy cross the line and become pathological? The photos are wonderful. The scenes Mark puts together are amazingly life-like. But many of the scenes are about murder and torture. Hogie's wedding scene had dead Nazis hung up in the back ground. I just couldn't help but think that the Nazis are perhaps the 5 men who took his life away. Is he really just reliving his trauma over and over rather than adjusting his life to move past it? Making his make believe world exactly what he wants his real world to be?

On the other hand, maybe this is giving him the only life that he would be able to have. Maybe without it he wouldn't have a reason to go on after the terrible trauma he went through. If living in his own world is the only thing that is keeping him going, who am I to say that it's bad?

The Marwencol website gallery posts some of Mark's photos along with his captions to tell the stories. In the last postings, Hogie and his wife Anna (apparently in the image of his ex-wife) have been assassinated. The following is the collected captions of this most recent installment. I leave you with this because I think it says a lot.

"Meanwhile the SS are downstairs having drinks. They're celebrating that the King and Queen of Marwencol are dead. Now it's easy to take over the townspeople-they don't have leaders or anything. Then Anna and I stick our heads over the railing of the balcony. We look down at the Nazis down there. And they look up and they're floored. And Anna and I hug. And the Nazis realize that they can't kill me. They can't kill Anna or I because we're going to live forever. We're immortal. I won."

Photographer Henrik Malmstrom's sister, Maija, was diagnosed with ovarian cancer at the age of 20 in 1999. In 2007, when she was re-hospitalised, Malmstrom began the photographic documentation of the last months of her life. In March of 2010, (two years after Maija's death) he published his photographs in a book entitled On Borrowed Time.

The title of the book is from a quote from Maija from 2003. “…We live on borrowed time. We borrow some time here on earth, we borrow some consciousness…”

In his photos, Malmstrom tries to capture the emotions of what is going on around him. They are all black and white. Many of the photos are slightly out of focus. There are photos of his sister and other family members but also photos from around the hospital. There are some nature photos but they all have a sad, bleak quality to them. The photo above is one of my favorites. The blurry IV pole and checked tile floor could come out of any hospital. The too skinny legs to guide the pole around add a human touch to these symbols of the sterile hospital.

Taking these photos was a way for Malmstrom to stay close to his sister while she was sick. The time he spent putting the book together was a way of working through his grief after her death. "The two years I worked on it after my sister's death have come to define all of my future work. This was my sorrow work, and I am now free to move on."



More photos can be seen in this article and on Henrik Malmstrom's website. Thanks to Paul for tipping me off about these great photos.

Judith Fox is a writer and photographer based in Southern California. Eleven years ago, having just been married to Dr. Edmund Ackell 3 short years, Judith's multi-talented husband was diagnosed with Alzheimer's disease. This strong, intelligent man, who has been a surgeon, pilot, artist, athlete and president of Virginia Commonwealth University is now the subject of Judith Fox's book "I Still Do: Loving and Living with Alzheimer's Dementia" published by powerHouse Books in Oct. 2009.

She says in an interview posted on the powerhouse website, that as a photographer, taking pictures of him was another way of loving him. In fact, it allowed her to see him more clearly.

I am always on the hunt for photographic memoirs centered around end of life issues, and this book certainly captures end of life themes. The book is 128 pages, with intimate photographs of her husband and thoughtful insights by the author to accompany the images.

Judith writes, "Alzheimer's doesn't announce itself with an ache, a pain, a limp. It rolls in like a fog. It dissipates. It leaves space for denial."

How often I hear this when speaking with families whose loved ones are in the end stages of dementia. "When did the symptoms start?" I'll ask, and always there is a hesitation. It is a fog, so gradual and faint at first, most don't even notice it's presence.

I find this photograph from the book extremely poignant when coupled with Judith's words. The illusion is as if the rest of the "real" Ed has vanished, with only a hand remaining. Next to the photo she writes that dementia, "Unveils the person we married and then replaces him with someone who doesn't know our name".

There are tender moments captured, where Ed sleeps with their cat, or rests in a chair. But there are also photo's that you see in his eyes a question. As though he is not quite sure what's occurring, or even who the photographer is.

She is very honest in her accounts as caregiver. I particularly resonated with her thoughts on delirium. She writes, "Who thought up the innocent-sounding euphemism 'sun-downing' to describe the anxious and erratic early-evening behavior? Let's be honest, here. How about 'howling at the moon'? How about 'clawing at the walls'? How about the 'twilight zone'? 'Sun-downing'? PLEASE. "

Overall the book places a soft focus on a devastating disease. Although honest in her account, one walks away with the feeling of her love and commitment to this man, instead of feeling doomed and exhausted from the disease. I suppose that's why the title is "I Still Do".

To see more photos, you can check out a series of 13 of the photographs located at Judith Fox's photography site here. To hear the author speak and read a few passages go to the powerHouse website here.

Married couple Ed Kashi, a photojournalist, and Juli Winokur, a filmmaker/writer, spent years working on their book "Aging in America: The Years Ahead". The book and photos, worthy of viewing, deal with the challenges facing the population over 65, but is also about America's collective denial of aging. Both agree that it was their experience with the project that helped them cope when they found themselves personally affected by the reality of aging in their own family.

Julie's father, diagnosed with end stage dementia, got to a point he couldn't live alone. The couple, with their 2 kids in tow, opted to move from California to New Jersey, so they could become his full time caregivers. They became one of the estimated 15 million known as the sandwich generation, taking care of both their own parents and children at the same.

They spent the 18 months he was in the home documenting the experience in film and photos. They offer a 2 part short documentary entitled "The Sandwich Generation" that can be viewed freely online. Part I is 11 mins and takes place in the first months of his arrival. Part II is 16 mins and summarizes much of Part I, but then goes on to show a wiser, more tired family.

This is one of Ed Kashi's photos from the movie of Herbie Winokur, who died Jan. 5, 2008 in the family's home.

I was struck by three things in this wonderful documentary. In Part I, Herbie is taken to the hospital after a fall at home and seems to have a prolonged stay, meanwhile deteriorating. The family becomes restless with the hospital and at one point Ed Kahsi says "Get him home, make sure he eats and is stimulated, who cares what the diagnosis is". I thought how true this sentiment can be with the people we work with. There comes a tipping point at times when it's more important to be home than to have all the why's answered.

There is also a lovely contrast seen between part I and II with the granddaughter. She speaks in part I about how good it is that "poppy" is living with them. But in part II says to her mother "Should I be honest? Because I wasn't in the first part." Her mother then draws out some resentment and awareness of "how much things changed" in the household when Herbie came to live.

Finally, an emotion caretakers often have, frustration and anger comes out with Ed on a day that Herbie gets confused while out on a walk and doesn't want to go home. Ed gets in his face, frustrated that he doesn't remember the hired caregiver who's worked with him for 2 years. It's a very honest moment, and a good reminder on how tough care giving can be.

If you have the time, check out the links for the movies. I think it's a realistic look into care giving and causes me to be more aware of the stresses the families that I see everyday are going through.

References: The non profit group that houses much of Ed Kashi and Julie Winokur's work "Talking Eyes Media" at http://www.talkingeyesmedia.com/
Part I can be seen at http://www.mediastorm.org/0009.htm
Part II can be seen at http://assets.aarp.org/external_sites/caregiving/multimedia/LifeWithHerbie.html

Or - Old Montreal and Art-as-therapy.

I was in Montreal recently for the 17th International Congress on Palliative Care. For those of you who have never been, the conference takes place 'downtown' in the area known as the Quartier International (lots of banker-types in suits, cell phones attached to ears as they walk down the sidewalks). The QI is right next to Vieux Montreal ("Old Montreal"), an area on the St. Lawrence which looks and feels like a medieval center of a European city. It's a main tourist area, with lots of streets-made-for-strolling, and where I think most of the conferences goers ate dinner. It's a beautiful place, slightly decayed, and has incongruous vistas (at least to this Midwesterner) which combine Old World cobblestone charm and decaying 20th century grain tower hulks - a site familiar to me from the upper Midwest. For an American however the feel is very Old World, and on the last night I was there my dinner mates and I wandered over to the St. Lawrence to watch a chorus sing/chant an eerie aria (like something from Rosemary's Baby), while sitting on concrete pylons in the water, in the dark, with flames burning in the background and on the water. I'm not sure how they got the flames on the water. It was fantastically weird and creepy and the spell wasn't broken even when a mini-armada of paddleboats came out to retrieve the singers from the pylons when it was over.

It's in this context that I stumbled across Cancer Connections/Cancer: vu et vecu at the Place des Arts, not too far from Vieux Montreal. It's a traveling exhibit of photos submitted by Canadians by/about/of people who have/have survived/have died from cancer (you can see all the photos at the website). There were several hundred photos on display, outdoors at the Place des Arts, and I was there around lunch time, completely by accident, surrounded by about 100 pre-teen school children on some sort of riotous field trip (whose major theme seemed to be 'run around like squealing like mad'), looking at the photos, balling my eyes out.

The photos on this post are from the exhibit, and if you look through the website and have ever taken care of patients with cancer (or have/have had loved ones with cancer) many of the images will be very familiar to you - scarred bodies, cachexia, alopecia, families sharing moments of affection and solidarity and grief, parents holding pale, Cushingoid toddlers. I found myself looking at my patients - at something very familiar to me - but also at myself. 'Myself' in the sense of my own grief and loss for my patients, but also my own fear that this will happen to me and the losses captured on film will be losses my children will experience if I die too young or I will experience if one of my children becomes ill.

There is inevitably a lot of grief in medicine, and certainly in palliative care. In order to function on a day to day basis I have to actively 'manage' my grief for the losses of patients I care about, and from the burden of witnessing others' grief and loss. Part of this is, at least at the bedside, being aware if a patient/family is challenging my boundaries due to the sheer magnitude of grief/emotion or because some aspect of the situation speaks to my own vulnerabilities (particularly as a father) - i.e. the situation runs the risk of becoming 'about me' and not the patient/family.

I don't mean to suggest that this is some sort of major struggle and that I'm on the verge of freaking out about my boys all the time. Nothing like that. It's more of a steady, low grade presence in my working life, something I keep a check on, and often diffuse with my interdisciplinary team. If you ever sit around with your team members, shaking your heads, saying This is a tough one - that's what I mean by diffusing it. But there's always some grief with me, and for professional sanity and to provide the best care for my patients I keep it to myself: at the bedside, it has to be about the patient/family. If not, and if it becomes unchecked you run the risk of fizzling out, avoiding rooms because they're 'too hard,' not sticking around to answer the tougher questions.

However, in front of these photographs, it was safe for it to be all about me - my losses, my affection for my patients, and my love and fears for my family, particularly my boys. There was only a hundred Quebecois schoolkids to witness; pretty safe relatively speaking, particularly as they were engaged in their noon-time riot. I began to cry, looking at the girl with her Granddad and the G-tube, and I realized boundaries I have in place to prevent me from overflowing with emotion at the bedside weren't needed in front of the photos - I had no therapeutic alliance to maintain or composed posture to defend. It was a wonderful hour of tears and catharsis, in a way I'd never experienced before. I've never understood catharsis, or people approaching art with the hope to see their experience reflected back to them in a way which allows for emotional release or whathaveyou. This may be because I'm jaded and cynical (and read a lot of art theory when I was younger and had 'ideas' about what art was supposed to be about and it's not a doctor blubbering about his existential dread while traveling for a conference); but it also may be because I've never had much in me that needed catharsis - I've lived a relatively blessed life (and still, to be sure, am living one) and it may only be the last few years - getting older, kids, hundreds of patients dying a year - that I had something that needed catharsis, particularly as the stimulus to much of my grief is one that I have to repress/manage as it unfolds.

So this was a first for me, at least that I am aware of, and the release and opportunity to it allowed me couldn't have happened without the images. Most of them are simple snapshots of familiar scenes - and scenes familiar to me from that place in me that knows how vulnerable my little life is. I am curious if others, as they've entered this work, or accumulated personal losses in their life, found that their relationship to the arts changed because of it, and found that they appreciated opportunities to cry for themselves about their patients and the way patients make them feel but in a 'safe' way; away from the bedside....?

Afterwards I headed back to the QI, and ran into a friend and told her about the exhibit. She thought it sounded a bit too heavy, so instead we went to see a showing of Randy Pausch's Last Lecture. God I love palliative care folks sometimes....

Amy's earlier post on postmortem photography reminded me of an article I had read sometime ago about a photo exhibit entitled "Life Before Death". This exhibit contains 24 pairs of black-and-white photos, one before and one after death. They were on display earlier this year as part of the Wellcome Collection, an art collection in London that focuses on the development of medicine.

Journalist Beate Lakotta and photographer Walter Schels spent a year following hospice patients in Germany. The people they photographed ranged from 17 months to 83 years old. They also conducted interviews of those they photographed.

The photos above are of 67 yo Edelgard Clavey. “I want so very much to die. I want to become part of that vast extraordinary light. But dying is hard work.”

The photos below are of 52 year old Heiner Schmitz. “Don’t they get it? I’m going to die! That’s all I think about, every second when I’m on my own."

Per an article on the exhibit, the goal of the artists was to break through the taboo of talking about death. "The dying want to talk about what it feels like to die, and the living ought to listen, for death can strike at any time."

When comparing the photos, I could see the normal signs of death, eyes sunken in, a loss of fullness in the face. But something interesting I noticed in all the photos was a shadow cast across the faces of the person after they died. It's as if a light has gone out.


I must admit when I first saw these photos, I found them a bit disturbing. When I really looked at them and started reading about the exhibit, I changed my view. During an interview about the exhibit Schels said, "People are almost always pretending something, but these people had lost that need. I felt it enabled me as a photographer to get as close as it's possible to get to the core of a person; when you're facing the end, everything that's not real is stripped away. You're the most real you'll ever be, more real than you've ever been before".

I enjoy taking pictures. Some might say too many pictures since I often have my small digital camera with me everywhere I go. But I was amazed to hear the story of Jamie Livingston who took 6697 Polaroid photos, one a day, from March 1979 to October 1997. Chris Higgins, a writer for the mental_floss blog discovered a website with all of these photos and started looking into the back story of Jamie. He had already deduced from the photos that he was a film maker, Mets fan and obviously an artist who made a photographic diary of his life.

When I look through these pictures and see a life laid out in singe frames through a Polaroid lens, I as myself lots of questions.

Why is it so important to the photographer to document all of this?What does this say about our daily lives? And what is truly important?

This picture of Jamie and his girlfriend was taken in late April 1997. A few days later one picture tells a much different story...radiation tattoos. A few months later he ended up in the hospital. But was able to get out of the hospital and get married.

The photos go on until the last day of Jamie's life. You should visit Jamie's pictures and see what a wonderful story they tell. One man's dedication to taking one photo a day to show 18 years of his life even when things were not pretty or happy. Taking photos of the everyday and the mundane and sad things we experience is the polar opposite of how our society thinks about photography. If you took out all your photographs right now what would it say about your life? Is it all weddings, birthdays, parties, and vacations?