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Paul Hill is regarded as one of the most influential photographers of Great Britain and is best known for his work "White Peak, Dark Peak". (1990 Cornerhouse)  He has spent his life photographing and teaching photography near his home is in Derbyshire, Northern England.  One of the unique things he and his wife, Angela, did was in1976 to establish "The Photographer's Place", a location for photographers to gather for study, retreat, and a workshop environment.


After 40 years of marriage, Angela was diagnosed with cancer, and in 2006, 2 years after her diagnosis, died from the disease. Her husband then began his journey into an uncertain world without her.  His photographs became his response to the grief he was experiencing. His work was published in November and is entitled "Corridor of Uncertainty" (2010 Dewi Lewis Publishing)

The title itself is steeped in metaphor.  Although those of us in the states may be unfamiliar with the phrase, it actually comes from the sport of cricket, and refers to a place that a batsman struggles most to determine whether to play the ball or leave.  Apropos for someone mourning...  Paul Hill writes, "Bereavement, for me, is being between two states: what has been and what may take place in the future. The work that I have made mirrors this interstice"

We have seen other artists document death, but I found it interesting that he writes about his images, "Of course they are informed by the harrowing experience of my wife's fatal illness, but I did not - could not- document her decline directly."

When I glance through the images I am struck by the emotional nature of the pictures. Even had you not known his wife had died, looking through the images as a collection, you'd surely have felt that something tragic had occurred. The images are quite raw and intimate and I'm grateful that Paul Hill decided to share his process with us.

His book is not the end of the matter either, in fact, it seems to be just the beginning. Currently Paul Hill is involved in a research project looking at photography, bereavement and grief. A website at De Montfort University explains the hopes for the project.

I encourage you to take a minute to glance through some of the images from his book, follow this link to do so.

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Watching the evening news a while back I enjoyed the interview of music legend Paul Simon with Brian Williams on NBC.  My ears pricked up when I heard the following part of the interview:

PS: "I'm not crazy about dying"
BW: "I don't know a big fan...."
PS: "No, not too many.  I'm trying to come...  I'm trying to not be pissed off about that"  and a little later...
PS:  "We were always told that your capacity for thinking sort of diminishes as you get older...but now I'm 69 years old and  I think the opposite, I think that it's better. So I look forward to seeing what more time will reveal."

Immediately I wondered about Simon's contemplation on aging and death. I went to work looking at his repetoir of songs to find out what he's been saying in his lyrics about death over the last 4 decades.

The first I found was released in 1972 entitled "Mother and Child Reunion".  From an interview with Rolling Stone that same year Simon explained the inspiration; "Last summer we had a dog that was run over and killed....It was the first death I had ever experienced personally....I felt this loss - one minute there, next minute gone, and then my first thought was, "Oh, man, what if that was [my wife] Peggy? What if somebody like that died? Death, what is it, I can't get it"

Knowing the inspiration then, the lyrics to the song fit, "I can't for the life of me/ Remember a sadder day/ I know they say let it be/ But it just don't work out that way/ And the course of a lifetime runs/ Over and over again."  However, just listening to the melody and upbeat tempo, you'd be hard pressed to hear this and think it was a mournful song.


In 1977 Simon released "Slip Slidin' Away".  There is not a lot of background known as to the inspiration for this piece, but clearly, there are palliative care themes in this.  Many think the "destination" described in the chorus represents death, others may quip that it is a metaphor for any goal or hope for one's life. Regardless the 4th stanza that says "God only knows/ God makes his plan/ The information's unavailable/ To the mortal man/ We work our jobs/ Collect our pay/ Believe we're gliding down the highway/ When in fact we're slip slidin' away"  sounds a lot like someone who is aware of their own mortality.


"The Late Great Johnny Ace" was released in 1983 and is very autobiographical.  Simon was 42 when this was released, and you can sense his maturity in the song.  We are taken on a journey revolving around death and life.  The song opens with Simon as a 12 year old hearing about Johnny Ace's death. Too young to really comprehend this reality, yet somber still the same, the song then shifts dramatically in tempo and melody to a more joyous time of the 60's. The listener has the sense that Simon feels young and immortal. The final third part changes back to the opening melody as Simon hears of John Lennon's death. He connects the news back to the late Johnny Ace's death, except now the sentiment is more personal. I find it haunting that the song concludes with a Phillip Glass instrumental piece, bringing an emotional climax to mortality, as one can imagine in the pulsating melody a clock ticking one's life away.


Finally we turn to Simon's recent album So Beautiful, or So What released this April. Just as the opening interview with Brian Williams suggested, Simon, now 69 years old, is even more aware of issues regarding aging and death. There are a couple of songs on this album that deal with death and mortality.  In "The Afterlife" he pokes fun at death with the opening words, "After I died, and the makeup had dried, I went back to my place" and near the end "After you climb, up the ladder of time, the Lord God is near. Face to face, in the vastness of space, your words disappear."

The more serious is "Love and Hard Times", which though not directly discussing death, is certainly a life reflection. The beginning sets up the human condition with a narrative about God coming and then deciding to disappear, "anyway, these people are slobs here".  The song then moves into a love ballad, and three stanzas cover their first meeting, hard times when love was gone and finally a present moment of gratitude.  The last verse could easily be someone on their death bed, in a still room, "The bedroom breaths in clicks and clacks/ Uneasy heartbeat, can't relax/ But then your hand takes mine/ Thank God, I found you in time"


All in all when I reflect over these works that cover 40 years I get the sense that Paul Simon has often been reminded that life is short. I get the feeling that this awareness allows him to focus on the important things. His statement then "I'm not too crazy about dying" may be less a fear or denial of death, than a realization that he has much more life to live, because life is good these days.

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Breaking Bad is an AMC television show that I recently discovered. It is starting it's fourth season this summer, so it's not a new series. But after I watched most of the first season, I knew it had to be a post.

Walter White is an over qualified chemistry teacher with a 15 year old son with cerebral palsy and a wife who is 7 months pregnant. He discovers that he has terminal lung cancer. Knowing his time is likely short (I think 18 months is what was mentioned in the show). He sets out to make money to pay for expensive treatments to support his family after his death. He does this by joining with a former student, putting his chemistry knowledge to use, to make meth.

Overall the show is a drama with a lot of drug dealing and violence. Walter turns out not to be the mild mannered chemistry teacher type. But I found the cancer angle to be very interesting. There are some very interesting palliative care type scenes. Early on in the show (Season 1) Walter was refusing to talk about treatment. His family had an intervention to discuss his choices with him.

I wasn't able to find the exact clip of his intervention but below is a "Minisode" (essentially the highlights of season 1 episode 5). The scene starts at 3:18. It isn't the complete scene but hits most of the key points. Marie is Walter's sister-in-law (who is actually a doctor) and Hank is her husband (who is a DEA agent, the plot thickens). Please forgive the brief advertisement.



Here is a clip of series creator Vince Gilligan talking about how emotional this particular scene was to make.




I love the talking pillow. Hmm, may use that in a family meeting. I really like the speech Walter gives at the end. Choosing to do nothing is itself a choice and was actually a much more thought out one than his family anticipated. While I wouldn't really call this series completely palliative care, it is an excellent drama with excellent acting.

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This post topic came to me thanks to my Google alerts (a way you can get email updates on your choice of topic). It's a great way to get updates on topics you are interested in without having to periodically Google them.

Fereydoun Ave, a modern Iranian artist recently displayed his newest works, entitled "Recent Works" at the Khak Gallery in Tehran. Ave's work before this had included collages that merge the figures of Iranian wrestlers with ancient reliefs of Persian kings and warriors. He had focused a lot on ancient masculine figures. So what does this have to do with palliative care, you may ask?

This show marks a departure from Ave's earlier work. This show illustrates his own personal history after surviving a long illness. I couldn't find exactly what his long illness was (the doctor in me sooo wanted to know). I only found that this work is meant to tell that story.

Ave's latest show includes 11 mixed media pieces and 7 sculptures. "Each of the mixed-media works begins with haphazard schemas and splashes of watercolor. The artist then prints familiar snapshots of daily life. Finally he over-paints them with new watercolor splashes." His sculptures have an archaeological feel to them.

I leave the interpretation of modern art up to the reader. Ave doesn't provide any explanation for each piece. His different pieces show flowers, a world map with superimposed flowers, a photo of a chair by a window with blinds, a chalice, and a family portrait. I would be interested to know what you think.

More of Ave's work can be seen here at the Khak Gallery website.

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I finally got around to seeing Rabbit Hole, which just came out on DVD in April.  It stars Nicole Kidman and Aaron Eckhart, who portray a couple that has lost their young son to a tragic accident.    The teaser from Rotten Tomatoes says it "is a vivid, hopeful, honest and unexpectedly witty portrait of a family searching for what remains possible in the most impossible of all situations"  Simple translation: This is a movie about grieving.

The couple deals with their grief in two totally different ways. Becca (Kidman) seems to want to erase everything that reminds her of her son and rarely shows emotion. In one scene her husband Howie (Eckhart) confronts her about this, "You're trying to get rid of him.......You have to stop erasing him. You have to stop it!"  To which she answers "Do you really think that I don't see him every second of every day?.........It feels like maybe I don't feel badly enough for you. Maybe I'm not feeling enough. What do you want from me?"

Howie has several angry outbursts in the movie, which seem to be part of his grieving process. He also strikes up a friendship with a woman from his grief group, played by Sandra Oh.

The grief group has some stereotypic characters, including another couple who has spiritualized the loss of their own child. Becca's confrontation of this made me smile.  The couple shares that the reason their daughter died was because God "needed another Angel"  to which Becca pipes up, "Why didn't He just make one?... I mean He's God after all?!?  Why didn't He just make another Angel?"

Interestingly we learn that Becca's brother died years prior, so Becca's mother Nat(Dianne Wiest) has great potential to be of comfort, if Becca would allow her to be. Finally towards the end, Becca connects with her mom and their exchange is one of my favorite moments of the movie. I love how Nat describes grief.

Becca: Does it ever go away?

Nat: No, I don't think it does. Not for me, it hasn't, and that's goin' on eleven years. It changes, though.

Becca: How?

Nat: I don't know....the weight of it, I guess. At some point, it becomes bearable.It turns into something that you can crawl out from under and...carry around like a brick in your pocket. And you... you even forget it, for a while. But then you reach in for whatever reason and - there it is. Oh right, that. Which could be awful- But not all the time. It's kinda...not that you like it exactly, but its' what you have instead of your son, so you don't wanna let go of it either. So you carry it around. And it doesn't go away, which is...."

Becca: What?

Nat: Fine...actually.

Overall, I thought this was a good movie about grief. The characters do heal during the movie, which is always nice to find your characters growing. I also enjoyed the sub context looking at the question of where one finds comfort in grief. This was mentioned and explored outwardly in many ways, from looking to religion, to other relationships, and even to parallel universes.

If you haven't seen it, check it out and do let us know what you think.

Also, here's the trailer if you want to get a feel for the movie visually.

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On May 4th 2011, Derek Miller, writer/editor/blogger, posted his last post on his blog. Miller had been blogging since 2000 on the website penmachine.com. In 2007, he was diagnosed with stage 4 colorectal cancer and he often blogged about his cancer and treatment.

In a post entitled "The endgame", in November 2010, Miller writes about the discussing his prognosis with his physician:

It's good that Thursday, November 25, wasn't Thanksgiving Day in Canada (it was in the U.S.), because that's when I found out. Doctors are notoriously reluctant to predict life expectancy, and for good reason—they're often wrong. But, with my wife Air in the exam room at the B.C. Cancer Agency with me, I drew it out of my oncologist, Dr. Kennecke.

"Do you expect I'll still be alive to visit you here in two years?" I asked, straight up.

"Honestly, no," he said.

There was more to it, of course, but that was the moment. It was no surprise.

He ends the post "I'm not ready to die just yet, but I'm ready to prepare for it. Off we go."

Miller died on May 3rd, 2011. He wrote his last post before he died and had friends post "The last post" on May 4th. It begins "Here it is. I'm dead, and this is my last post to my blog."

It's a sweet but sad read. Miller talks about his wife and two daughters, his experience dying, his views on the afterlife. Miller is a very talented writer and I'm sure this last post will be cherished by his family. What is sad is that the comments on the post really focused on Miller's views of the afterlife (he doesn't believe in one) rather than his beautiful last message to the one's he loved.

The world, indeed the whole universe, is a beautiful, astonishing, wondrous place. There is always more to find out. I don't look back and regret anything, and I hope my family can find a way to do the same.

What is true is that I loved them. Lauren and Marina, as you mature and become yourselves over the years, know that I loved you and did my best to be a good father.

Airdrie, you were my best friend and my closest connection. I don't know what we'd have been like without each other, but I think the world would be a poorer place. I loved you deeply, I loved you, I loved you, I loved you.

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We've discussed some of the more unique ways people are being buried these days, like custom coffins or eco-friendly burials.  I am waiting for the recumbent effigy to regain popularity as well.

An effigy is traditionally known as a representation of a person, and as a form of funerary art, first began appearing in the 7th century BC. It was the Etruscan Civilization of northern Italy that really excelled in portraying humans and this art evolved from just a representation of a human head, to entire figures placed on the lid of the sarcophagus.  This picture on the right is taken from the Louvre. It is entitled "Sarcophagus of the Spouses" from 520-510 BC. The detail of clothing and jewelry from a time thousands of years ago is astounding, but so too is the contemporary way this person was honored in death.

This art form re-emerged in the 12th century, and by the 14th century the effigies began to include hands clasped together in prayer. I find this fact interesting, considering that it was in 1415 that the Ars Moriendi text appeared as a directive from the church on how to die well, focusing on prayer for traits of faith, hope, patience, humility and generosity.

A slight variation on the recumbent effigy was seen in the later Middle Ages, depicting the effigy in the form of a decomposing corpse.  Often called "transi" or "corpse tombs", the purpose was to remind the living that the "good" life was indeed temporary.  These funerary monuments often were in double-decker style, with the proper effigy on top, in robes and crowns, and the rotting corpse statue below.  This picture from Fyfield in Berkshire is from Sir John Golafre who died in 1442.

As the centuries progressed more effigies were done in life like poses, often the deceased depicted reading a book, at a banquet and often depicted in younger days.  This example on the right,contained in Paris at the Louvre, is a classic example of this, as the woman appears quite comfortable reading her book with her dog near by.  Notice though, the "Transi" here, with the naked decaying relief showing an older woman below the effigy.

The most recent recumbent effigies I found were of Herbert Kitchner (1850-1916), pictured to the left, which is housed at St. Paul's Cathedral in London and that of Sun Yat-sen (1866-1925) in Nanjing, China.

So, has this funerary art form that has existed for thousands of years finally died off?  Or should we consider the embalming and preservation of such icons as Mao Tse Tung and Vladimir Lenin as modern day variations?  Perhaps even postmortem photography could be considered a branch? Or what of the technique of  plastination... there are plenty of rumors swirling about Zsa Zsa Gabor and Michael Jackson's bodies being plastinated.  If so, this permanent effigy just may be the 21st century's answer to recumbent effigies.

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I've been looking for a good blues song to post. I found it in an unusual place. The White Stripes (a rock group) do a cover of the song "Death Letter" (also called "Death Letter Blues". This song was originally performed by American blues singer Eddie James "Son" House. (Apparently House greatly influenced their music and they dedicated their first album to him.)

"Death Letter" is a song about a man who receives a letter that his love has died. He doesn't realize how much he loves her until he sees her being . He goes home grief stricken and missing his love. He then decides he needs to change his way of living so he "don't have to cry no more." I think the death, grief and regret aspects do well sung to the blues.

Interestingly, I found several different lyrics for this song. The ones below don't completely match the song performed below. Apparently House would often change the tempo and lyrics of his songs and would even perform the same song more than once in the same concert. The lyrics are apparently a long version of the song. If you are interested in hearing The White Stripes version, there is a video here which is quite good depending on what you like.





I got a letter this mornin how do you reckon it read?
It said Hurry, hurry, yeah, your love is dead
I got a letter this mornin I say how do you reckon it read?
You know it said Hurry, hurry, how come the gal you love is dead?
So I grabbed up my suitcase and took off down the road
When I got there she was layin on a coolin' board
I grabbed up my suitcase and I said and I took off down the road
I said but when I got there she was already layin on a coolin' board
Well I walked up right close looked down in her face
Said the good ol' gal got to lay here 'til the Judgment Day
I walked up right close and I said I looked down in her face
I said the good ol' gal she got to lay here 'til the Judgment Day
Looked like there was 10 000 people standin' round the buryin' ground
I didn't know I loved her 'til they laid her down
Looked like 10 000 were standin' round the buryin' ground
You know I didn't know I loved her 'til they damn laid her down
Lord have mercy on my wicked soul
I wouldn't mistreat you baby for my weight in gold
I said Lord have mercy on my wicked soul
You know I wouldn't mistreat nobody baby not for my weight in gold
Well I folded up my arms and I slowly walked away
I said Farewell honey, I'll see you on Judgment Day
Ah yeah oh yes I slowly walked away
I said Farewell, farewell, I'll see you on the Judgment Day
You know I went in my room I bowed down to pray
The blues came along and drove my spirit away
I went in my room I said I bowed down to pray
I said the blues came along and drove my spirit away
You know I didn't feel so bad 'til the good ol' sun went down
I didn't have a soul to throw my arms around
I didn't feel so bad 'til the good ol' sun went down
You know I didn't have nobody to throw my arms around
I loved you baby like I love myself
You don't have me you won't have nobody else
I loved you baby better than I did myself
I said now if you don't have me I didn't want you to have nobody else
You know it's hard to love someone that don't love you
Ain't no satisfaction don't care what in the world you do
Yeah it's hard to love someone that don't love you
You know it don't look like satisfaction don't care what in the world you do
Got up this mornin' just about the break of day
A-huggin' the pillow where she used to lay
Got up this mornin' just about the break of day
A-huggin' the pillow where my good gal used to lay
Got up this mornin' feelin' round for my shoes
You know I must-a had them old walkin' blues
Got up this mornin' feelin' round for my shoes
Yeah you know bout that I must-a had them old walkin' blues
You know I cried last night and all the night before
Gotta change my way a livin' so I don't have to cry no more
You know I cried last night and all the night before
Gotta change my way a livin' you see so I don't have to cry no more
Ah hush thought I heard her call my name
If it wasn't so loud and so nice and plain
Ah yeah
Mmmmmm
Well listen whatever you do
This is one thing honey I tried to get along with you
Yes no tellin' what you do
I done everything I could just to try and get along with you
Well the minutes seemed like hours hours they seemed like days
It seemed like my good old gal outta done stopped her low-down ways
Minutes seemed like hours hours they seemed like days
Seems like my good old gal outta done stopped her low-down ways
You know love's a hard ol' fall make you do things you don't wanna do
Love sometimes leaves you feeling sad and blue
You know love's a hard ol' fall make you do things you don't wanna do
Love sometimes make you feel sad and blue

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Trouble on the Mountainside (from nanofiction - Andrew Looney) "Death!" Chris cried triumphantly. Flashlight beams danced together on the plastic floor as rain pattered lightly on the canvas above. "Death by Chocolate means I win!" Suddenly there were noises outside. Everyone froze. A face peers in through the flap. "Lights out was an hour ago," said the scoutmaster, "and... hey, Fluxx! Can I play?"

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I'm doubtful there is anyone reading this who actually owns this CD.  I came across it doing some internet browsing.  The CD is "Dead and Gone # 2: Totenlieder - Songs of Death"  (1997).  Although released in Germany, the majority of songs are actually in English.

It's very eclectic, and reminds me of someone making a CD for a friend, just sticking a lot of random songs about death onto a disc.  I went on a little journey though, attempting to find some examples of some of the songs and was definitely introduced to some new music.  However, I still can't decide if this was a serious attempt at a compilation or a joke.

When I say eclectic, I am not exaggerating.  For instance the opening track comes from an alternative rock group from Australia named The Beasts of Bourbon.  You can listen to "Rest in Peace" on Youtube.  This is followed by a dark piece by the prolific poet, actress, singer/songwriter Lydia Lunch called "Gloomy Sunday"  The song, mostly spoken, seems to discuss suicide as the lyrics say "Soon there'll be candles and prayers that are said I know, but let them not weep, let them know that I'm glad to go"

Listening to some of the very old traditional songs like "Whisper Softly, Mother's Dying" (1928) I was struck with the potential history preserved on this album. You'll hear what I mean if you follow the link above to a short 30sec. clip of the song.

One of the most frightening songs of the album is a piece by avant-garde opera and jazz musician Diamanda Galas entitled "Cris D'Aveugle" (Blind Man's Cry) taken from a text written in 1873.  The song is full of whispers and screaming. Overall, the song seems more suited to a haunted house exhibit.

Probably the most musically pleasing song to me was the 4th track from the group Miranda Sex Garden.  The group is a female trio who generally sings a Capella madrigal music.  Their song "Gush Forth My Tears" has been remixed many times. The harmonies are beautiful and the lyrics quite simple; "Gush forth my tears/
and stay the burning/of my poor heart/or her eyes/choose you whether/o' peevish fond desire/alas my sighs
sighs out/still blow the fire"



Finally I must mention the closing song by Gary Floyd "From the Darkness to the Light" (1999).  Although meant to be uplifting, in the traditional up beat blue grass tempo, the song's meaning is much more macabre. The lyrics "We are moving from the darkness to the light. Rest has come, our battles done, we've won the fight" are discussing someones actual dying process. What I find a bit eerie is the way musically voices are added to the chorus, as if more and more people are dying.  The end, is even more haunting with 2 child voices finishing up this energetic melody, as if they too are happy to be dying.



In sum, a unique compilation of mostly unknown music.  If I think of each piece as 'art' rather than radio music material, I can enjoy it a bit more.

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61 year old jewelry maker Susan Braig was diagnosed with breast cancer in 2004. Braig had private insurance but was under-insured and left many thousands of dollars in debt. She found a unique way to combine her illness and her art to help pay off her medical bills.

In 2007, Braig went to a medical themed art exhibit and got the idea to use her own leftover pills in her jewelry. "I bought my first round of medicine and it cost $500 out of my own pocket," she said. "I looked at the drugstore receipt and then at the little pills and wondered if they were precious gems." One of her first pieces was a princes tiara made from her cancer medications. Now Braig gets old medications donated to her by friends to transform into her jewelry art. She launched a line of jewelry called Designer Drug Jewelry.

My first thought, is this even legal? Apparently, she seals the pills so that they are unusable. (I wonder if she has rules about what pills she uses, like no Schedule IIs.) As she uses pills and gel caps, some of the jewelry is very fragile and heat intolerant. She uses old medication bottles and with cotton balls to package her jewelry.

I was intrigued by the story because I liked the symbolism. She has turned her old medications into "precious gems". Turning somethings that are likely symbols of her illness into something very unique and beautiful. I never saw pills, with all their different colors and shapes, as beautiful before. (I guess that's why she's the artist.) Also it just amuses me to see a necklace with "Zofran" written on it. Apparently her Viagra necklaces are quite popular.

Braig's story was recently featured in the LA Times which is where I found it. She has also been on NPR in the past, talking about her cancer debt and being under-insured.

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When you look up "Country Music" you'll mainly find definitions about origin.  One unwritten stereotype, however, is the emotional narrative of the genre, that can at times feel as if the listener is being manipulated to tears.

There surely is a cathartic aspect to listening to songs that make you cry, as evidenced on a recent home visit of mine.  I was seeing a young cancer patient, and the TV was set on CMT, with country videos playing in the background.  What shocked me was that the patient's young wife and friends had me pause to watch part of a video in which the theme of the song was about death.  The wife commented, "We just love these songs, and sit here and cry with them all day" (As if there wasn't reason enough).

Well, there are plenty of country songs to cry about. In fact, there may be enough songs to actually form an unofficial sub-genre called 'Cancer Country' as mentioned by Ron Rosenbaum in a 2007 article published on Slate.com.

So, if you are a country music fan or have friends or patients who are, add these next songs to your repertoire of emotional songs about people with cancer.  The warning label on these should read "may induce tears"

The oldest on my list is Tim Mcgraw's "Live Like You Were Dying" written by Tim Nichols and Craig Wiseman in 2004.  The song is associated with Tim Mcgraw's father who was diagnosed with a brain tumor in 2003, living 9 months after diagnosis.  These lyrics set up the song, "I spent most of the next days, looking at the x-rays, Talking bout' the options and talking bout' sweet times. I asked him when it sank in, that this might really be the real end. How's it hit 'cha when you get that kind of news?"


In 2005 Rascal Flats released the single "Skin" written by Joe Henry and Doug Johnson. Known by fans as "Sara Beth" the song is about a girl with Leukemia going to her prom.  An example of the lyrics, "Sara Beth is scared to death, as she sits holding her mom, 'cause it would be a mistake for someone to take a girl with no hair to the prom"


Craig Morgan released his single "Tough" in 2007. This song is about a breast cancer surviver who teaches her husband a lesson about being 'tough'.  The lyrics say it all, "She wore that wig to church, pink ribbon pinned there on her shirt, no room for fear, full of faith, hands held high singing Amazing Grace. Never once complained, refusing to give up, and I thought I was tough"


Finally, Randy Owen, former vocalist in the band Alabama, released his first solo single in 2008 entitled "Braid My Hair" written by Chris Gray and Brent Wilson. The song is about a bald headed girl going through chemotherapy and dreaming about what she will do once she's well, as the lyrics state, "I'm gonna ride my bike, I'm gonna climb a tree. Gonna fly a kite, score running little league. I'm gonna go to school, make a friend, be able to run again. Take off my mask and just breath in the air. But most of all I'm gonna braid my hair."


Besides being about cancer, each of these songs has another central theme- one we in Palliative Medicine talk about a lot - the theme of 'quality of life' living.  Each central person is dreaming about and attempting to live a full life in the midst of disease.

Anyone know of any other "cancer country" songs that should be included?

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Some time back I blogged on Memorial Quilts (specifically the AIDS Memorial Quilt). I recently discovered another quilting project meant to bring awareness to Alzheimer's disease. The Alzheimer's Quilt Initiative was started in 2006 to not only raise awareness but to help fund research.

This month, the Initiative is kicking off it's 5 year traveling quilt exhibit, "Alzheimer's Illustrated: From Heartbreak to Hope". The show is made of of 182 "Name Quilts" (a section is pictured to the right) that are 6 inches long and 7 feet tall. Each is made up of 55 patches sewn with the wrong side of the fabric to the outside, each with a name of someone who had or has Alzheimer's disease or dementia. (The fabric is on the wrong side to give it a more worn look.) There are over 10,000 names to represent many many more who have the disease.

Along with the Name Quilts, there are 55 smaller art quilts that represent some aspect of Alzheimer's. Unfortunately, the names and artists of these quilts were not on the website. The images are spectacular. The quilt at the top left shows a pair of footprints walking off into a forest. The image under it is a representation of the brain of the Alzheimer's patient and to the right represents the degeneration of neurons.

One of my favorite quilts (to the right) shows a gentleman in a purple top hat and bow tie locked away. It demonstrates a very interesting personality, held captive.

The Senior Prom quilt shows an elderly couple dancing. The quilt on the bottom right shows a couple walking down an empty hallway toward an Exit sign. The bottom left is a colorful image of a butterfly taking off.

Being from a family of quilters, I'm always amazed at the amount of work and time that goes into every quilt, but these are truly works of art. They take the folk art type media of fabric and quilting and make fine art. The artists can paint such beautiful works with fabric. And each work seems to be significant to the life and experiences of the artist.

The Art Quilt Initiative's has another project, Priority: Alzheimer's Quilts. They collect small 9" X 12" quilts donated to them and sell or auction the quilts off to support Alzheimer's research. Some of the quilts are Alzheimer's themed but most are not.

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I was sitting at a stop light recently, nonchalantly glancing to my right when I noticed a sign for a cemetery reading "Resurrection Cemetery".   This struck me as odd. Do only people who believe they will be resurrected get buried here? Do people ever get offended by the name? This led to all sorts of questions about the names allotted to cemeteries.

First, it greatly depends on who owns the cemetery.  Cemeteries can be owned by cities/ townships, churches, or private owners such as a funeral home.  As you may guess, if a cemetery is associated with a church, it most likely will have the name of the church in it.

There is a web site I found that has culled through names and has them listed as most common to least common. For instance, according to The Political Graveyard, the most common name of a cemetery is actually Presbyterian with 175 located mostly east of the Mississippi River.  The second most common is Episcopal (140) and third is Evergreen (111).

It appears that the two main categories of names are either of religious origin; denomination, saint, or biblical theme such as hope, grace, etc. or landscape origin such as Woodlawn, Oakwood, etc.  There are certainly also many cemeteries named for people or towns, such as Washington and Lincoln.

Then there are the names that make us chuckle, like Prospect Hill, which leads one to ask, prospect of what? Or Hollywood Forever Cemetery, which still has some plots for those of us who want to rest with some of the who's who of Hollywood's yesteryear.


If the cemetery name is unique enough, it could even become a national attraction, like the Merry Cemetery in  Sapanta, Romania. As its name implies the tombstones are colorful and whimsical, with poems used as epitaphs.


Although not so much unusual by name, the location of this cemetery is what caught my eye.  The Neptune Memorial Reef located off the coast of Key Biscayne in Miami, Florida is what the name implies, a cemetery under the water.  Loved ones' cremated remains are mixed with cement and attached to the man-made reef with a name plate for future divers to visit.

With the 115,000 cemeteries that exist in the United States, I am sure there are other obscure and unusually named cemeteries.  However, the name is likely not to be under consideration when buying a plot. According to an AARP survey 53% of purchasers picked a cemetery based on family reasons, history or heritage and another 24% chose based on location. It seems the name, be that Assumption, or Mound or Odd Fellow didn't play a part.

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Pallimed Arts and Humanities is undergoing a redesign similar to Pallimed: Case Conferences.  There are still some bugs being worked out, and some new features being added including refined navigation.  Hopefully this cleaner look will increase the ease of use of the site, and encourage exploration of some of the wonderful posts from the archives.  These same changes will be coming to the main Pallimed blog in the next week or so.

We will roll out new features on all three blogs over the next few weeks, including a chance for you to write for any of the Pallimed blogs.  One of the more important changes is with the commenting system.  I was never a fan of the user interface under the basic Blogger template, but there was little room for customization.  I had been researching add-on commenting systems for a while and finally decided on Disqus (pronounced "discuss", get it?).  This platform has been implemented on several popular blogs and has been shown to have increasing stability, so we have finally made the switch.

So what does this new commenting system mean for you?

Pros

• No more word 'captchas' (the squiggly words)
• When you sign up for to follow the conversation with email, you get a really cool feature to reply straight from your inbox.  Just hit reply and your comment goes straight back to the blog.  Try it out!  It is pretty easy and  keeps the conversation going.
• Disqus allows us to build our community of commenters.  When you login (instead of just commenting as a guest) a user profile is started that tracks your comments and 'likes' from other people.  Our hope is as this system grows we can find a way to reward the commenters who contribute the most.  You do not need to sign up for a Disqus account, but it does allow for more functionality across multiple blogs if you comment a lot.
• You can attach links without knowing any html code and they will be clickable.  You can also embed videos and images easily.  
• You can log in with multiple other accounts securely.  Facebook, Twitter, Yahoo, and OpenID are all available.  Pallimed collects no information, such as user names or passwords from this type of login. 
• When you sign in with Facebook or Twitter, you have the option of sharing your comment with other people in your network. You have a chance to 'opt out' of sharing before posting, just look for the little square icon in the lower left area below the comment box.  We obviously would love for you to share your comment with your network and spread the word about Pallimed.  Since we have no advertising budget (or regular budget to speak of) anything helps to widen the discussion about palliative care intersecting with Arts and Humanities.
• You can still leave anonymous comments, although you will have to enter an email address to comment.  Obviously you could leave a fake one, but you would miss out on the great replies to your comment.

Cons

• It is a new system to learn, but it is pretty intuitive.
• If you are concerned about someone seeing everything you ever commented on, then you may not want to use this, but at the same time, it will help you to make sure that your comments are clear, straightforward and helpful even if critical. 

Please send any feedback to christian@pallimed.org

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Summer is late, my heart.
Words plucked out of the air
some forty years ago
when I was wild with love
and torn almost in two
scatter like leaves this night
of whistling wind and rain.
It is my heart that's late,
it is my song that's flown.
Outdoors all afternoon
under a gunmetal sky
staking my garden down,
I kneeled to the crickets trilling
underfoot as if about
to burst from their crusty shells;
and like a child again
marveled to hear so clear
and brave a music pour
from such a small machine.
What makes the engine go?
Desire, desire, desire.
The longing for the dance
stirs in the buried life.
One season only,
and it's done.
So let the battered old willow
thrash against the windowpanes
and the house timbers creak.
Darling, do you remember
the man you married? Touch me,
remind me who I am.

Thanks to Catherine Ellsworth for sending me a link to this poet

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This is the final selection on this mini series on children's books that deal with grief.  I'm sure we'll review more books in the future, however these were the 5 books my local rural library had on hand.  It ended up being a nice eclectic mix and hopefully illustrates the variety out there.

Grandma I'll Miss You is written by Kathyrn Slattery and illustrated by Renee Graef.  The book was published by Chariot Books in 1993 and is listed for ages 4-8.

The main character in this book is Katy, who is dealing with some very mixed emotions. She is aware her grandmother is dying and she is also anticipating the birth of a new sibling.  This book uniquely brings in the idea of birth being similar death.


The beginning of the book is very story like, spending most time on Grandma's life. I suppose you could say this is the life review portion, as Grandma shares memories from her life.  As in the last two books reviewed, one of the big questions Katy has is "What will happen to Grandma when she dies? and Is there really such a place as heaven?" Unlike the other books these are just thoughts Katy has and aren't directly addressed.

What is refreshing is that Katy actually asks her grandma, "are you afraid about dying?" This leads to a creative illustration linking death and birth together. The grandma admits her slight fear, but then tries to put herself into the unborn babies shoes, as the baby too has no concept of what it will soon experience.

The next pages are very Christian based in concepts about heaven, and about getting a new body there. Katy and her Grandma wrap up the conversation and then the very next morning the Grandma dies. I did appreciate the statement on the book's last page, "Death, in its way, was as natural a part of life as birth", something we in palliative care definitely understand.

The illustrations in this book are simple and realistic. There isn't any thing that stands out in color scheme or medium used.

In terms of recommendation, this book probably has the most narrow audience of the one's we've reviewed. If it is line with a family's personal beliefs, then it would be a good conversation book, though it seems geared to older than the quoted 4-8 yr. old.  I did enjoy the normalization of death as similar to birth, and think there could be some other concepts related to that link to help grieving kids.

To sum up these last 5 book reviews, it seems that a common theme for children's books are the "What happens after?" questions.  3 books had different answers, and if that is the question your child is asking, it would be important to find a book with the answer you want to share!  The other type of book seems to be about grief itself - normalizing feelings and emotions one goes through in the process.

I hope to keep reading and familiarizing myself with what's out there so that when families ask me what to do, I'll be able to delve into the issue of concern, and make some more informed recommendations!

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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.

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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.

veholmstrom@verizon.net (Eric Holmstrom, D.Min. BCC)