Monday, February 7, 2011
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
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Monday, January 31, 2011
This next book in our series of children's books that deal with grief has a famous author, which will often add to the appeal in buying a book. Perhaps from the media's input, I had also already heard of this book before actually getting it from the library.
The author, Maria Shriver, points out on the back that this book came from actual discussions with her 6 year old, at the time of the daughter's great-grandmother's death. I think knowing that perspective helps in the review as well, since the previous books Tear Soup and When Someone Dies was written by a hospice worker and grief counselor, respectively.
What's Heaven? is written by Maria Shriver and illustrated by Sandra Speidel. Published by Golden Books in 1999, the age listed for reading 4-8.
Although the title would imply a book all about Heaven there are definitely other topics covered. The plot line follows Kate who comes home to find her mother sad and news that her great-grandmother has "died and gone to Heaven". This prompts not questions about death or what "died" means but questions about what Heaven is. The concepts specifically in question are: Where Heaven is?, Are animals there? and How do you get there? I think these are questions I myself would like to know!
There is also discussion about what a funeral is and thanks to cousin Bobby, questions about the actual casket. Here's an example of a conversation Kate has with her mom: "Bobby told me we are going to a funeral where we are going to bury Great-grandma in a box. Why are we going to do that? Will it hurt Great-grandma? How will she breathe in the box? What if she wants to get out?"
As is typical of little ones, there are many more questions than answers in the book. As parents have learned, it's more about the concept we are sharing than the specifics of each question. This book is similar, the general message is one of hope; that after death there is a distant, safe place where all the best parts of someone goes... that it's okay to be sad and it won't last forever and that by remembering our loved ones they remain alive in us.
The illustrations are done in pastels, with a more vibrant feel than some of the grief books I've seen. The pastel's also allow for a dream like or memory like quality, as sharp details are left out. There are a lot of words on each page, and no paragraphs, perhaps emulating the way children can move from one topic to another in stream-less fashion. Each page does have one phrase that is doubled in font size, I suppose then if just browsing the book you could pick up on the highlights.
If you have a child with some of these specific questions, it would be a great book! What's challenging in these types of personal stories, is that your family may not agree with all of the concepts presented. For instance if you don't want to teach your child, "when your life is finished here on earth, God sends angels down to take you up to Heaven to be with him" Then you'd have to either skip the page or do some other teaching on what your family concept is.
In comparison with the other books reviewed thus far, this book is by far the most specific in terms of one family's beliefs and/or opinions. And rightly so, as the author makes no presumption of being an expert, but simply using her own experience to share with others...
Stay tuned, we have a few more to review!
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Monday, January 17, 2011
As mentioned in the first in this series on children's literature dealing with grief, there is an abundance of material out there to recommend to families with children dealing with grief. In fact, it's often overwhelming with so many choices. Hopefully this random sample from my local library will, if nothing else, illustrate the wide variety of books out there.
Often until you actually see inside the book yourself, it's hard to know which book is the right one. In fact, if you went on just book lists, the book I'm reviewing today is by far on more lists than any other books I'm reviewing, making me assume it is very popular. Yet without reading it, as you may see, I wouldn't have discovered it's unique style, different than Tear Soup, or even The Goodbye Boat reviewed in an earlier post.
When Someone Dies is written by Sharon Greenlee and illustrated by Bill Drath. Published in 1992 by Peachtree publishers it is written for a reader aged 8-12.
The book is considered plot-less, with each page making more of a conversational statement in second person. This approach seems to lend itself to a normalizing of the emotions and issues surrounding grief. The statements center around feeling sad and mad, but also about concepts of dreaming of your loved one, and worrying if other people around you will die too. For example, here are some of the statements:
"If the person who died was very important to you, you get to worrying that all the other important people might leave too. I've never heard of it happening that way, but it's hard not to think about it"
"When people die, they can't come to your house anymore. You wonder what they'd look like now, and you do all you can to make a picture of them in your mind."
Towards the second half the author begins to task the reader to actually do some things such as finding someone to cry with and writing a letter to the person who died.
Besides normalizing grief with the second person speech, I noticed that the word "dies" is used 10 times out of a total of 15 pages of statements. I can't help but think even using the word is a way to normalize the experience. No metaphors in this book, death is definitely the main character.
The illustrations use a washed out almost dull tone, adding to the mellow nature of the book. One thing I found interesting is that all of the scenes are out doors in nature and the people all Caucasian, which doesn't do much to normalize to a wide audience.
I think for certain children, this type of writing style is what is needed. Due to this books popularity on many of the lists out there, it's definitely good to be familiar with it!
Stay tuned again for more books coming up...
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Sunday, January 9, 2011
An Indie store near you
Sunday, January 9, 2011 2
This morning, as on many Sunday mornings, I listened to Krista Tippett's "Being" - today's show, "Words that Shimmer" which featured a discussion with Elizabeth Alexander on "what poetry works in us and in our children and why it may become more relavent in hard and complicated times." I could not wait to sit down, think about what I had heard, and share it with you. The entire show is worth listening to, but I'd like to hightlight the moments or words that caused the heart of this palliative care clinician to whorl and dance. "I came to learn what is means as a poet to be the person who can sit with those profound, profound, essential human experiences, and to let them happen, and to not fight them, and learn from them.
I never would have thought before that it was a privilege for someone to let you be intimate with them as they move towards dying.
But it was. And I think I understood that because I was having and raising these little babies."
Neonatology
"[...] birth is like jazz,
from silence and blood, silencethen everything,jazz."
and then Autumn Passage.
"On suffering, which is real.
On the mouth that never closes,the air that dries the mouth.On the miraculous dying body,its greens and purples. [...]"
 | Crave Radiance: New and Selected Poems 1990-2010 Publisher: Graywolf Press Date: 2010 Language: English Available at: amazon.com graywolfpress.org |
Monday, January 3, 2011
If you look at any bibliography of childhood grief books, it is likely to be quiet extensive! Take for instance the bibliography on the Child Grief Education Association website, here. The good news is that there is no shortage of literature available.
My question is, though, with so many choices- which ones are the best? This answer probably has much to do with the child's age, the questions they are asking and simply the child's personal preferences in books. A simple title of a book won't give any insight into the intricacies of the book, thus we must rely on word of mouth or websites such as BarrHarris.org, Childlife.org or the many other hundreds of grief websites that give a synopsis of the books. But even this doesn't give a clear understanding of what the book is like.
The best option, would be to read them all ourselves. While a lofty goal that I have not yet achieved, this week I did the best I could; I went to my local library in rural America and checked out all the books I could find on childhood grief. Hopefully the reviews of these books, with illustrations and story plot will give you a more thorough idea of some of the children's books out there.
For this first post I have chosen a book that has great appeal for adults as well as children. I would consider it a "cross-over" book, and may in fact be more of an adult book disguised as a children's book.
Tear Soup is written by Pat Schwiebert and Chuck Deklyen, Illustrated by Taylor Bills. Published as a 3rd Rev. edition by Grief Watch in 2005, the age level listed for reading is age 4-8.
The main character is Grandy, who has suffered a 'great loss'. She spends the pages working on her tear soup, which serves as a marvelous symbol of grief. The universal statements packed into the book are so subtle, sometimes it takes a moment to recognize them. For example, "It seems that grief is never clean... To make matters worse, grief always takes longer to cook than anyone wants it to"
She deals with adding memories to the pot and even the profound concept of the time that memories seem to run out, and the emptiness felt then. There are interactions with neighbors and friends, as Grandy says, "They filled the air with words, but none of their words took the smell of tear soup away." Or when she comments that, "most people can tolerate only a cup of someone else's tear soup."
The book also approaches faith issues, as Grandy "demanded to know where God was when she was feeling so all alone."
As one might guess, Grandy works through her grief until she realizes it's time to eat something else instead of only tear soup. The book ends with a nice summary of Grandy's journey, "I've learned that grief, like a pot of soup, changes the longer it simmers and the more things you put into it. I've learned that sometimes people say unkind things, but they really don't mean to hurt you...and most importantly, I've learned that there is something down deep within all of us ready to help us survive the things we think we can't survive."
This book has wonderful illustrations and while I am not sure a pre-school child would understand the significance of all the metaphors, it would certainly provide a starting point for topic discussions. It may also serve as a great recommendation for a family with an adult who has been resistant to dealing with their own grief... by innocently entering into the realm of a kid's book, they may be surprised to have issues raised within themselves.
Stay tuned over the next weeks for more reviews of children's literature and feel free to leave your own favorite children's books about grief in the comment section below.
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Monday, December 27, 2010
All art work is copyrighted to the artist (often only a screen name is known), and listed in sequential order at the end. For further Gallery posts, links are provided for convenience at the bottom.
Today's Gallery theme is "Quality of Life", so picked secondary to this phrase's essential part in the definition of palliative care.
The definition of QOL from thefreedictionary.com:
Quality of life (n): Your personal satisfaction (or dissatisfaction) with the cultural or intellectual conditions under which you live (as distinct from material comfort).
"Quality of Life" copyright Harley.Pain roils within me, without
Despair assails me, and doubt
What is the use of all this striving for survival?
What is the quality of this persistent life?
A Fleshy form twisted into tangled knots
And mind cramped with bitter regret
The sun shines, but darkness covers me with futility
Soul stripped to the bone
Thousand-yard stare fixed on far horizon
Sane men call me mad
"Quality Of Life - Poem" (Aug. 2000) by A.K. WhiteheadI have lived a life-- or two,
depending where the line is drawn.
What has been accomplished
is, as if it were, undone,
and what remains undone
is the heel that kicks the spur.
Life, time, accomplishment
define each other...
and their exclusions
rising like pale mountain ranges
whose heights perceptibly increase
with their proximity
Finally a poem read by the author herself. This is "Quality of Life" by poet Harryette Mullen. It is a part of her 5th collection, the book entitled Sleeping with the Dictionary (2002)
Art work displayed:
"Quality of Life" (2010) Sandy Brooke
"Quality of Life" (2007) spotandbones
"Quality of Life Painting" (2007) Patrick Sheridan
Past gallery posts: "Itch", "Dysphoria","Last Breath", "Pain", "Afterlife", "Restless","Stillness" and "Grief"
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Monday, December 20, 2010
I seem to find palliative care topics everywhere. Most recently it was while watching basketball. Well, while my husband was watching basketball. The tournament he was watching on December 7th was the Jimmy V Basketball Classic. During the game they advertised Jimmy V Week. So it got me wondering, who was Jimmy V?
Jimmy V (or Jimmy Valvano) was a famous college basketball coach and sports broadcaster, known for being the head coach at North Carolina State University when they one the 1983 NCAA Basketball Tournament. (He is especially known for running around after that game, looking for someone to hug.) In 1992, he was diagnosed with bone cancer.
After his diagnosis he co-founded the V Foundation for Cancer Research with ESPN. Since it was founded in 1993, the V Foundation has raised more than $100 million for their cause.
Below is a famous ESPY Awards speech given by Valvano in 1993 (the very first ESPY awards) while receiving the Arthur Ashe Courage and Humanitarian Award. This speech was given just 8 weeks before he died. It was during this speech that Valvano announced the formation of the V Foundation. He ends this speech with, "Cancer can take away all of my physical abilities. It cannot touch my mind, it cannot touch my heart, and it cannot touch my soul. And those three things are going to carry on forever. I thank you and God bless you all."
Sports stories are not my usual topic but when I saw the speech he gave, I knew it was a Pallimed Arts story. You could tell when he walked up onto the stage that he was not really doing well. But when he spoke, he had so much energy and humor that I found myself forgetting about the cancer.
Monday, December 20, 2010 0
Monday, December 13, 2010
Jack Radcliffe is a photographer based in Baltimore, Maryland. Known for his documentary style, black and white photographs, he has excelled at photo series of family members and friends over a span of time. His images display intimacy allowing the viewer an empathetic connection at once.
Jack acknowledges his fear when first asked to be a part of the project saying, "When I began I wasn't really sure what hospice was. I only knew that it had to do with death." He got in contact with a hospice in York, PA called York House AIDS Hospice and the director Joy Efema granted him permission to come photograph. The York House was a three bed inpatient facility that no longer exists. Primarily taking care of AIDS patients, Jack writes how fortuitous it was to start this project after the death of his own mother, "My mother had just died, and my father was dying. I wasn't dealing at all with my loss. Being with Joy and the nurses at York House - seeing their devotion to patients, both physically and spiritually- helped me to view death as a part of life. It was a cathartic transformation for me, and eventually I was able to grieve for my parents as well as the patients I came to know."
When you look through the photographs on Jack's website, you'll find a narrative below the pictures from Barbara Ellen Wood, who was assigned as an intern to keep a journal during the project. I found the little vignettes and descriptions added to the visual story presented.
While his images, which were taken over a decade ago, should be overly familiar to us in palliative care, I found myself touched and moved more than expected. Perhaps these photo's actually allow me to step back and feel the emotion captured more than my typical myopic view in the midst of daily work.Monday, December 13, 2010 0
Monday, December 6, 2010
I found this story in a recent CNN article. Five year old Aidan Reed was diagnosed with leukemia in September of this year. Aidan immediately began treatment. With a new baby at home (born 12 days after Aidan's diagnosis), his father had to take leave from work to help out. Financially, things quickly got bad for Aidan's family and they even discussed having to sell there house.
Aidan loves to draw and he loves to draw monsters. (To the right is Gillman, one of Aidan's favorite monsters to draw.) After his aunt received some of his drawings, she had an idea of how to financially assist Aidan's family. She set up an Etsy account called Aidan's Monsters and began 
selling Aidan's art. For those of you not familiar, Etsy (one of my favorite websites) is an online forum for people to sell there homemade art, clothes, jewelry etc. Aidan's monsters were so popular that the family made $83,000 in just a few weeks. You can see more of Aidan's art on his blog.
A few things I found interesting about this story. First is the very clever use of Etsy for fundraising (again, one of my favorite websites). Aidan's aunt is only selling the pictures (prints) for $12 each and managed to sell around 7000.
Another thing was the obvious parallels people were making with Aidan drawing monsters while fighting a "monster" himself. I even read somewhere that the monsters were some kind of subconscious manifestation of his fight. Really? Can't he just be a five year old boy who really likes to draw monsters. Wouldn't that be a much more likely explanation.
Reading this story also introduced me to a series I hadn't read on CNN.com, entitled Empowered Patient. It was started by Elizabeth Cohen after her newborn daughter accidentally got an unnecessary spinal tap. She writes on different topics like how to get the most out of your doctors visit and how to talk to children about illness.
Monday, December 6, 2010 0
