Monday, February 28, 2011

The Julie Project

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.

Monday, February 28, 2011 by Amber Wollesen, MD · 4

Monday, February 21, 2011

Okemah by The Iguanas

This is a guest post from Eric Holmstrom. (I wasn't able to find a full version of the song to post but you can listen to a sample here.) I had never heard this song before Eric emailed me. It now has an honored position on my playlist. Thanks Eric! And thanks to everyone who sends us great posting ideas.

Rock/Swamp Rock/Americana/Chicano --- that's how ReverbNation categorizes the music of the Iguanas. They possess what is described as a "broad palette of styles ranging from crunchy, edgy rockers; funky soul strutters and succulent West Coast R & B to trad conjunto; dreamy cruisers and hard-boppin', conga-powered jazz supported by a myriad of Latin beats." All of this and more is on their last CD - If You Should Ever Fall On Hard Times.
In the midst of its mélange of word and sounds the impressionistic Okemah stood out, catching the ear and interest of this history major and palliative care chaplain with images and impressions that led to a second listen and then, a third.
Okemah? Choctaw overalls, sunset sounds? Cottonwoods, cotton mouth? Frozen hills of Chosin? That old robed Filipino? Smelling the old muddy creek, seven days a week. "Please release me, now, baby let me go." The medicine is kicking in, and I'm dreaming of chemo once again.
Rod Hodges, the Iguana's songwriter, guitarist/accordionist wrote the words to Okemah at a point where his father's death and the drowning of New Orleans were going on simultaneously. "When Katrina hit, my father was dying of cancer, right at the same time," he says, "So it was a really rough time for me. That's pretty much a description of my experience in the hospital with him, I was describing feelings and in some instances, literal things I heard or saw during that time." (
Evocative and haunting, Hodge's words conjured up his father's time of dying. You hear his father's march on bloody frostbitten feet in the hills above the Chosin reservoir, living to live and then die another day. You see the Filipino, a veteran floor mate in that washed out faded robe on the VA oncology floor. You wonder where you do go when the meds kick in and chemo dreams take you down again?
Where do you go when your father and your city is dying? Where do you go when all you can do is go with him? Okemah's haunting music and its lyrics are Rod Hughes' answer.

Black bottle thumping across my back,
dragging a twelve foot cotton sack.
Old Filipino in a hospital robe, singing please release me, baby let me go,
singing please release me, baby let me go.
And the medicine is kicking in,
and I'm dreaming of old chemo once again.
And the medicine is kicking in,
dreaming of, old chemo once again.
I can still smell that muddy creek,
Oklahoma sun, seven days a week.
Cottonwoods and cotton mouth,
Choctaw overalls and sunset sounds.
Frozen hills of Chosin, deep in my soul,
Okemah to Korea, they call it age of rock and roll.
And the medicine is kicking in........ (Eric Holmstrom, D.Min. BCC)

Monday, February 21, 2011 by Amber Wollesen, MD · 1

Monday, February 14, 2011

Children's Books on Grief: Where is Grandpa?

This next book in our series may be chosen by some simply for the beautiful illustrations.  This is one reason I wanted to spend time reviewing some books on childhood grief.  Although great lists exist out there, we don't often get to see inside the book itself.  Having a toddler myself, I am aware that it is often the illustrations that spark her interest in reading.

Somewhat like our last review on Maria Shriver's book What's Heaven?, author T.A. Barron describes this book as autobiographical. The personal nature of the story definitely adds to the sincerity of the story.

Where is Grandpa? is written by T.A. Barron and illustrated by Christ K. Soentpiet. The book was published by Philomel Books in 2001 and has the age group listed as 4-8.

The voice is first person, and the plot follows a young boy on the day of his Grandpa's death. Much of the story is told in memories, as each family member shares about a  favorite time with Grandpa.  However, when it is the boy's turn he is speechless. After being prompted by his mother about a story he thinks, "Even if I did, I didn't feel like telling it."

Although the family tries to think of suggestions, I appreciate that the boy is allowed to remain silent. The boy then works up the courage for the big question, "Where is grandpa now?"

The final pages attempt to answer this question.  Although the word heaven is used, the father quickly adds, "heaven means different things to different people. And it's hard to explain."  Ultimately it is described as "any place where people who love each other have shared some time together."  This allows the boy to get out of his sad funk and begin to think of the places he shared a memory with his grandpa. In fact the last illustration of the book shows the boy actually smiling.

As mentioned, the illustrations are exquisite. Done with a very realistic feel, there are a lot of nature scenes with special attention on the lighting. Most of the story takes place at dusk, and the illustrator actually moves us subtly  through a sunset to darkness during the book.

This is another book I would recommend. It is lighter than some of the other books reviewed, not tackling as many concepts or questions.  However, I appreciate the simplicity and hope offered in the story.  Like the Shriver book, because this is based on a personal story, we encounter this family's personal beliefs/opinions and one should be comfortable in the concepts presented.

One more to book to go... stay tuned.

Monday, February 14, 2011 by Amy Clarkson · 0

Monday, February 7, 2011

Why We Write

Recently I read an essay in the Canadian Medical Association Journal that focused on an interesting topic arts topic. The article entitle "Why we write (and how we can do it better)" discusses why clinicians decide to write and publish their experiences, focusing around five common errors that the author, Allen Peterkin, MD (founding editor of Ars Medica) sees as he reviews submissions.

"I've been forced to reflect on why doctors write, how and when we do it and whether there are mistakes we make as we go along. It occurs to me that this new wave of composition is not always honest, helpful or even benign. As educators, policy-makers and clinicians, we should reflect on what writing and sharing stories means to us, how we approach the task and then contemplate what the risks are to our integrity as physicians"

He starts off with some more basic writing-for-publication type issues. One mistake he sees is too much cutting to the chase, writing more of a case report than a story. He find that doctors "favour tidy endings, epiphanies and accounts of patients who exhibit courage and triumph over adversity." He feels stories about our failures are much more honest and interesting. He also sees that often doctors forget who they are writing for. The story may be more for the author and not for the reader.

As an example of the fourth error, he gives a story told by novelist Margaret Laurence. While at a dinner party, a neurosurgeon told her that he planned to write novels after he quit surgery. She replied "What a coincidence- when I stop writing, I plan to take up brain surgery." He finds that the clinician (specifically physician) writer often lacks humility and patience for the writing process.

The most serious error that he sees is that the clinician feels that the stories heard and experienced in the clinical setting belong to him/her. This error is the ethical and professional issues surrounding publishing a patient's story without permission.

This article really focuses on the patient centered narrative writing we do to be published. I think there is a lot of writing that we do just for ourselves. I don't keep a journal but every once in awhile I do sit down and write out a story. It's always for myself, most often trying to get out some emotion that I didn't feel I could have expressed at the time. It's no great work of literature and often gets erased a few days later. But I think that was Peterkin's point. Not to discourage writing but to point out that there should be a difference in the kind of writing we do in patient charts, for case studies, for ourselves and that which we do and submit for public consumption. For anyone interested in this type of writing, it definitely gives you something to think about.

Thanks to Thomas Quinn who sent me this article.

Works Cited: Why we write (and how we can do it better) Peterkin CMAJ.2010; 182: 1650-1652

Monday, February 7, 2011 by Amber Wollesen, MD · 4