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This is another installment to our Gallery Series. As a reminder, I generally pick something related to palliative medicine and then begin an online hunt to find art work and poetry with this word or phrase in the title.  Hopefully this becomes a stepping point for further thought and exploration.

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. Whitehead


I 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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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.

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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.

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Humans have been placing their deceased loved ones in coffins for centuries.  The word "coffin" is ultimately derived from the Greek word ko-pi-na ,(basket) which as a word appeared in manuscripts as far back as 1300 B.C.!

In the US, the design has stayed relatively the same over the years, except for that brief time in the 1800's that people were afraid of being buried alive and a crop of "safety coffins" popped up.

The same is not true in Ghana, Africa, where for the last 60 years the Ga tribe in the coastal region of Ghana have celebrated an individual's life by designing custom coffins.

When I say custom coffin I do not mean painting a traditional coffin in personalized colors or designs as the company Colorful Coffins in the UK, or Happy Coffins in Singapore does.  Although these coffins are beautiful and individualized, they still hold to the traditional Coffin form.

In Ghana, however, "custom" implies bold and different, as a handful of wood workers have created a unique craft, actually molding the wood into individual objects that represent the deceased's life.  This can range from a soda bottle, seashell, fish, or shoe to represent an item the person sold for a living. Or the coffin may be a symbol of something loved, like a cigarette, Mercedes, airplane or ice cream bar.

The colorful coffins take weeks to months to prepare and can cost a year's salary for a Ghana resident. If the deceased hadn't planned ahead enough for the coffin to be ready- the body sometimes must be refrigerated the length of time it takes to finish.  Other delays can come with family disputes on what item should actually represent the deceased.

They say that more and more foreigners are purchasing these type of coffins, thought whether the purchase is purely for art or if this trend is beginning to catch on for actual burial practices is unknown. In case you are interested eShopAfrica actually offers the Ga coffins for purchase on-line and shipped to your door. (You may also enjoy seeing other ideas)

So, what do you think?  Does the idea of personalizing your coffin as the other two companies listed above do, appeal to you?  Do you think the idea of a over-sized wooden object as a coffin will catch on in the US?

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For three years running now, many of us bloggers have participated in what we’ve called a “blog rally” to promote Engage With Grace – a movement aimed at making sure all of us understand, communicate, and have honored our end-of-life wishes.

The rally is timed to coincide with a weekend when most of us are with the very people with whom we should be having these unbelievably important conversations – our closest friends and family.

At the heart of Engage With Grace are five questions designed to get the conversation about end-of-life started. We’ve included them at the end of this post. They’re not easy questions, but they are important -- and believe it or not, most people find they actually enjoy discussing their answers with loved ones. The key is having the conversation before it’s too late.

This past year has done so much to support our mission to get more and more people talking about their end-of-life wishes. We’ve heard stories with happy endings … and stories with endings that could’ve (and should’ve) been better. We’ve stared down political opposition. We’ve supported each other’s efforts. And we’ve helped make this a topic of national importance.


So in the spirit of the upcoming Thanksgiving weekend, we’d like to highlight some things for which we’re grateful.

Thank you to Atul Gawande for writing such a fiercely intelligent and compelling piece on “letting go”– it is a work of art, and a must read.

Thank you to whomever perpetuated the myth of “death panels” for putting a fine point on all the things we don’t stand for, and in the process, shining a light on the right we all have to live our lives with intent – right through to the end.

Thank you to TEDMED for letting us share our story and our vision.

And of course, thank you to everyone who has taken this topic so seriously, and to all who have done so much to spread the word, including sharing The One Slide.




We share our thanks with you, and we ask that you share this slide with your family, friends, and followers. Know the answers for yourself, know the answers for your loved ones, and appoint an advocate who can make sure those wishes get honored – it’s something we think you’ll be thankful for when it matters most.


Here’s to a holiday filled with joy – and as we engage in conversation with the ones we love, we engage with grace.

To learn more please go to www.engagewithgrace.org. This post was written by Alexandra Drane and the Engage With Grace team.

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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."

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One of the things I enjoy about "the arts" is the ability to continually stimulate more art. Art imitates life, life imitates art, and art even imitates art.

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My Life Without Me has been on my To See movie list for a long time. This weekend I finally had the opportunity.

Ann is 23 years old. She lives in a trailer in her mother's back yard with her husband and two young girls. She works nights cleaning the university. After having a fainting spell at home, she discovers that she has ovarian tumors that have spread to her stomach and liver. She is given about 2-3 months to live. One of the first things she does is sit and make a list of all the things she wants to do before she dies.

1. Tell my daughters I love them several times.
2. Find Don a new wife who the girls like.
3. Record birthday messages for the girls for every year until they're 18.
4. Go to Whalebay Beach together and have a big picnic.
5. Smoke and drink as much as I want.
6. Say what I'm thinking.
7. Make love with other men to see what it's like.
8. Make someone fall in love with me.
9. Go and see Dad in Jail.
10. Get false nails. And do something with my hair.

She never tells anyone about her diagnosis. She says she does this as a gift for her husband and children as she doesn't want their last memories of her to be doctor appointments and hospitals. For the same reason she refuses any treatments or further tests. She works to complete her list, while making tapes for all of her loved ones to explain her choices and offer some final words.

She has a unique relationship with her doctor, Dr. Thompson. When he is telling her the bad news about her cancer, he sits beside her in a waiting room chair. He admits to her that he has to sit beside her because he can never look someone in the eye when he tells them they are going to die. In the end, Ann entrusts him with all of the tapes she made for her daughters as she knows he will remember to send them. He agrees to do this as long as Ann will continue to come and see him weekly, saying "Dying is not as easy as it looks, you know, but there's no need for you to have to feel terrible all the time."

The story is often run through Ann's inner monologues, what she is thinking about life and death as she does the grocery shopping, or walks down a busy street. Below is from the beginning of the movie as she is standing out in the rain.

"This is you. Eyes closed, out in the rain. You never thought you'd be doing something like this, you never saw yourself as, I don't know how you'd describe it... As like one of those people who like looking up at the moon, who spend hours gazing at the waves or the sunset or... I guess you know the kind of people I'm talking about. Maybe you don't. Anyway, you kind of like being like this, fighting the cold, feeling the water seep through your shirt and getting through your skin. And the feel of the ground growing soft beneath your feet. And the smell. And the sound of the rain hitting the leaves. All the things they talked about in the books you haven't read. This is you, who would have guessed it? You."

At then end the film, Ann lies in bed watching her neighbor (also named Ann) joyfully interact with her husband and children as the neighbor helps them make dinner. She tells them she is bed suffering from a bad case of anemia.

"You pray that this will be your life without you. You pray that the girls will love this woman who has the same name as you and that your husband will end up loving her too. And that they can live in the house next door and the girls can play dollhouses in the trailer and barely remember their mother who used to sleep during the day and take them on raft rides in bed. You pray that they will have moments of happiness so intense that all their problems will seem insignificant in comparison. You don't know who or what you're praying to but you pray. You don't even regret the life you're not going to have because by then you'll be dead and the dead don't feel anything. Not even regret."

This is a very sad but beautiful movie. (I will admit that I may have shed a couple tears at the end.) As Ann moves through her last days, you really get to feel you know her. It's an interesting perspective on dying young and poor. For what little she has, Ann accomplishes a lot in her last few days and weeks.

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Okay, I am probably late on this one since the book was published initially in 2007, but I have finally had a chance to read Pauline Chen's "Final Exam: A Surgeon's Reflections on Mortality" (Knopf, 2007; Vintage, 2008).


Dr.Chen is a surgeon who does both liver transplants and liver cancer surgery.  Most recently on faculty of UCLA department of surgery, she speaks nationally and writes a column for The New York Times.  


Her book, as the title implies is a autobiographical reflection of her experiences regarding death; beginning in medical school and moving through various training periods. We in palliative care, of course, deal with death frequently, thus reading this book you will surely find things that resonate with you as well as things that frustrate you. 

Her writing style is very engaging in its authenticity and narrative form. I read about patients that could easily have been people I have taken care of in my own training. The honest insight into her thoughts is refreshing. I enjoyed watching the transformation of her own avoidance of death, to a timid acceptance of death.

There are fundamental ideologies that she depicts that are very entrenched in our medical system as the following quotes illustrate:

"Along the way, then, we learn not only to avoid but also to define death as the result of errors, imperfect technique, and poor judgment. Death is no longer a natural event but a ritual gone awry.....By evading death, we miss one of the best opportunities for us to learn how "to doctor" because dealing with the dying allows us to nurture our best humanistic tendencies" (p95)

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The rock band Red Hot Chili Peppers was initially formed in 1983 with four members, Anthony Kiedis (vocals), Michael Balzary (aka Flea, bass), Jack Irons (drums), and Hillel Slovak (guitar). In 1988, Hillel Slovak died of a heroine overdose at the age of 26. (Picture to the left is Slovak.)

In the bands recent biography, An Oralivisual History by the Red Hot Chili Peppers, Kiedis (who was also addicted to heroine) talks about the loss. "I denied it and didn't allow myself to feel the true nature of grief and loss until I go out of rehab. I went to visit his grave site, and started speaking to his ghost, and then I realized, 'Oh shit, my partner is gone.'" The loss led Kiedis into rehab. Irons couldn't take staying in the group after his friend died and eventually left.

Slovak was replaced by guitarist John Frusciante and the group has gone on to great success in his absence. In 1991, the group released the album Blood, Sugar, Sex, Magik (which is really their breakout album). One of the songs on this album, "My Lovely Man" was written as a tribute to Slovak.


Even if the Red Hot Chili Peppers aren't your musical style, the lyrics to this song are a very sweet, emotional tribute to a lost friend. The lyrics are fairly self explanatory and are at the end of the post. (FYI, Slim was a nickname for Slovak.)

On a previous album, Mother's Milk, the band released another song "Knock Me Down". Which is was also a tribute to Slovak. One of the lines of the song, "I'm part of you, you're part of me. Why did you go away?"

I used to shout
Across the room to you
And you'd come dancin'
Like a fool
shuffle step
You funky mother
Come to me
All warm as covers

Rest with me
My lovely brother
For you see
There is no other
Memory so sad and sweet
I'll see you soon
Save me a seat

Well I'm cryin'
Now my lovely man
Yes I'm cryin'
Now and no one can
we never fill the
The hole you left my man
I'll see you later
My lovely man if I can

In my room
I'm all alone
Waiting for you
To get home
Listen to Roberta Flack
But I know you won't come back

Well I'm cryin'
Now my lovely man
I'll see you later
My lovely man if I can

Just in case
You never knew
I miss you slim
I love you too
See my heart
It's black and blue
When I die
I will find you

Well I'm cryin'
Now my lovely man
Yes I'm cryin'
Now and no one can
we never fill the
The hole you left my man
I'll see you later
My lovely man if I can

Well I'm cryin'
My lovely man
Well I'm cryin'
My lovely man
I'll see you later
My lovely man
We have some good time
My lovely man

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I recently saw the pilot for a new Showtime series, The Big C, which premiered in August. Cathy Jamison is a middle aged school teacher with a new diagnosis of advanced melanoma. She could do chemo but she feels it would only be buying her little time and everyone would be taking care of her. She sets out to make the most of her last year, in her own way.

She kicks out her imature husband and sets out to be the more spontaneous, liberated one herself. She essentially begins to build herself her a to do list in this first episode. She begins to have a pool installed so she can swim with her son as she did when she was young and she begins to reign in her unruly teenage son. She starts to help an overweight teenager quit smoking and lose weight. She pours wine on her couch, something she sees as a symbol of how uptight she was in the past, and plans to burn it in the yard.

Several times during the pilot she tries to tell her family about her diagnosis. Each time she changes her mind at the last minute. At the very end of the episode she tells her neighbor's dog.

One of my favorite scenes in the show is when Cathy goes out to eat lunch with her young doctor. She wants to know how it feels for him to deliver bad news and he divulges that she is the first person he has ever had to tell such news. He nervously asks how he did.

"Very professional and matter of fact but detailed. You dumbed it down enough to be clear but not insulting. And underneath it all you seemed sad and I appreciated that. But after you left the room I heard you joking with the nurse about putting the doughnuts too close to the urine samples and is that what your supposed to wash it down with... it made me doubt your sincerity."

End of life issues aside, I found the pilot to be entertaining. I have always liked Laura Linney (who plays Cathy) and I think she does an excellent job of balancing funny and serious, more on the funny side. I'm looking forward to watching more of this series.

There is an excellent article on the series in Obit Magazine written from the point of view of someone who has been diagnosed with cancer. Trailer below.

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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.

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I must admit that Bedrich Smetana (1824-1884) is not one of those composers I go around mentioning or hear brought up in conversation much. In fact, the name didn't even sound familiar when I first started researching this piece. However, his 'Piano Trio in G minor" is familiar, and the story of it's inception is worthy of a post for this blog.

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I found this song when I was doing research on strange songs people wanted to have at their funerals. I don't know if it's funeral worthy but it is an interesting song. Dead by They Might Be Giants came out on their album Flood in 1990. Dead, like many of their songs is... quirky. (The song is below and you can see the lyrics at the end of the post.)



My initial thought was that it is sung from the point of view of a person who died young or wasn't ready to die-"Accidently taken off the shelf before the date stamped on myself". (Reincarnated as a bag of groceries?) He expresses a lot of regrets about the things he won't ever get to do and wonders how the event (his death) was taken.

After listening to the song a couple times, I changed my view. Maybe it's not someone physically dead but someone who just feels that way. Or maybe he is dead and just lived a life very similar to being dead. "Now it's over I'm dead and I haven't done anything that I want or, I'm still alive and there's nothing I want to do"


They Might Be Giants don't really give a lot of clues as to what they were thinking with their songs. They have on occasion said that some of their songs really don't have a deeper meaning (or even a meaning) to the lyrics but this song seems like it does. Whether they speak of a physical death or more of a spiritual one is open to interpretation.

Dead

I returned a bag of groceries
Accidently taken off the shelf
Before the expiration date
I came back as a bag of groceries
Accidently taken off the shelf
Before the date stamped on myself

Did a large procession wave their (Did a)
Torches as my head fell in the basket, (large pro-)
And was everybody dancing on the casket? (cession dance?)

Now it's over I'm dead and I haven't done anything that I want (now it's over)
Or, I'm still alive and there's nothing I want to do

I will never say the word
"Procrastinate" again; I'll never
See myself in the mirror with my eyes closed
I didn't apologize for
When I was eight and I made my younger brother
Have to be my personal slave

Did a large procession wave their (Did a)
Torches as my head fell in the basket, (large pro-)
And was everybody dancing on the casket? (cession dance?)

Now it's over I'm dead and I haven't done anything that I want (now it's over)
Or, I'm still alive and there's nothing I want to do

(So) So I won't
(Sit) sit at home
(And) anymore
(And) and you won't
(And) see my head in
(And) the window
(And) and I won't
(And) be around
(And) ever anymore
(And) and I'll be up there on the wall at the store

I returned a bag of groceries
Accidently taken off the shelf
Before the expiration date
I came back as a bag of groceries
Accidently taken off the shelf
Before the date stamped on myself

Did a large procession wave their (Did a)
Torches as my head fell in the basket, (large pro-)
And was everybody dancing on the casket? (cession dance?)

Now it's over I'm dead and I haven't done anything that I want (now it's over)
Or, I'm still alive and there's nothing I want to do

Now it's over I'm dead and I haven't done anything that I want (now it's over)
Or, I'm still alive and there's nothing I want to do

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I know Christian has mentioned before having ah-ha moments when listening to songs and finally really "hearing" the lyrics. This happened to me this week as I had the children's music writer/singer Justin Roberts on. On one of the slower songs on his album "Meltdown" (2006) I suddenly heard words that I realized were talking about dying.

Justin Roberts -web- -Facebook- -Twitter @MusicianJustin- -YouTube-