A terminal disease cultural archive

This is a forum to share gifts from family, friends, and readers in the form of citations to creative works focused on illness, mortality, and life. Books, movies, songs, poems, essays, paintings, websites, and other windows on eternity are all welcome, along with comments.

A terminal disease cultural archive
Michael Gollin
First published September 2013

Books:

Tuesdays with Morrie: An Old Man, a Young Man, and Life’s Greatest Lesson (1997), by Mitch Albom
http://www.randomhouse.com/features/morrie/
– Thanks Julia! This is the gold standard for teaching how confronting death helps us live beautiful and rich lives.

Morrie: In His Own Words: Life Wisdom From a Remarkable Man (2008) http://www.amazon.com/Morrie-Words-Life-Wisdom-Remarkable/dp/0802717179

Until I Say Good-Bye: My Year of Living With Joy, Susan Spencer-Wendel with Bret Witter (2013)
http://susanspencerwendel.com/
-A touching story by a plucky journalist about her journey of personal discovery with family and friends upon diagnosis with ALS
-NPR interview http://www.npr.org/2013/03/09/173525564/d

The Death of Ivan Ilyich (1886, Tolstoy)
Tony Judt, The Memory Chalet – http://www.amazon.com/Memory-Chalet-Tony-Judt/dp/0143119974
-Thanks Rachel Weiner!
-My Aunt Gill knew him professionally and visited with him while he had ALS. When she went blind a few years ago, she recalled his adaptation to his constraints – I think he used an adaptive device for communicating with his eyes
-the essays are crisply written and well-told, an intellectual’s rise in postwar England and life odern New York.

Learning to Fall, Philip Simmons – http://www.amazon.com/Learning-Fall-Blessings-Imperfect-Life/dp/055338158X
-Thanks Rachel Weiner!

Murder in the Cathedral, T.S. Eliot – http://www.amazon.com/Murder-Cathedral-T-S-Eliot/dp/0156632772
-Thanks Rachel Weiner!

The Woman at the Washington Zoo, Marjorie Williams (seems like something you would already own, but if not) http://www.amazon.com/The-Woman-Washington-Zoo-Writings/dp/1586484575
-Thanks Rachel Weiner!

The Journal of a Disappointed Man – http://www.gutenberg.org/ebooks/39585
-Thanks Rachel Weiner!

The Last Lecture, 2008, Randy Pausch, http://www.thelastlecture.com/ http://en.wikipedia.org/wiki/The_Last_Lecture

Feature Films
:
The Pride of the Yankees: The Life of Lou Gehrig (1942) http://en.wikipedia.org/wiki/The_Pride_of_the_Yankees

Tuesdays With Morrie movie (1999, Jack Lemmon, Hank Azaria) http://www.amazon.com/Tuesdays-Morrie-Jack-Lemmon/dp/B00008L3SE/ref=sr_1_1?s=movies-tv&ie=UTF8&qid=1379276205&sr=1-1&keywords=tuesdays+with+morrie

Ikiru (To Live) (1952, Kurosawa)

The Bucket List (2007, Jack Nicholson, Morgan Freeman, dir. Rob Reiner)

A Love Affair: The Eleanor and Lou Gehrig Story (1978, Blythe Danner)

50/50 (2011, Seth Rogen) –A young cancer patient confronts his mortality

Regarding Henry (1991, Harrison Ford, Annette Benning, dir. Mike Nichols)
-Thanks Mike Lyon!


Television Series
:

Boku no Ita Jikan (The Hours of My Life, lit. “The Time I Was Here”)
First Episode (and others): http://www.gooddrama.net/japanese-drama/boku-no-ita-jikan-episode-1

(Entry by Natasha Gollin. Thanks, sweety!)
Boku no Ita Jikan is an 11-episode Japanese drama that started airing in January 2014. It stars Haruma Miura as Takuto, a man in his early twenties who discovers he has ALS not long after graduating from college and finding a job. At first he thinks it doesn’t matter because his shallow life had no real aim or purpose until then, but as the show goes on, he discovers more little goals and reasons to fight for his life, even as his physical abilities are stripped from him one by one. There is some added family drama as Takuto’s insensitive, introverted younger brother Rikuto can’t see what’s happening to him, and their parents have devoted most of their attention to Rikuto, who is studying to be a doctor so he can satisfy his parents and take over the hospital. Takuto also begins falling in love with a sweet and selfless former classmate, but he starts pulling away from her because he fears becoming a burden on her. Coincidentally—or perhaps not—she begins studying nursing around the same time…

While at times a bit melodramatic, especially with the background music, this is a very raw and human drama filled with deep emotions and complex questions (e.g., is it worth holding on to life for your loved ones’ sake when it would be easier to just let go?) that will leave a long-lasting impression. Miura’s role is especially difficult, but despite being healthy and able-bodied, he portrays the fear, frustration, and anguish that accompany ALS surprisingly well. There is also some cute comic relief, but it’s the serious moments that really shine.

Documentaries:

http://www.fastcocreate.com/1679433/getting-up-how-a-locked-in-graffiti-artist-inspired-the-impossible

Nick Read’s documentary Warren Zevon: Keep Me In Your Heart

The 1st of three Ted Koppel interviews with Morrie Schwarz aired March 17, 1995 http://abcnews.go.com/Nightline/video/interview-tuesdays-morrie-part-9084429

Morrie Schwarz: Lessons on Living – `Ted Koppel’s 1995 interviews, compiled and released 2005 on the 10th anniversary of Morrie’s death http://www.youtube.com/watch?v=dcnL2o385Gw&list=PL47AF4D5336C4B491

Soul of Healing: Body, Mind and Soul, Deepak Chopra (DVD vols 1 (2004) and 2 (2007)
-Thanks Mike Lyon!

Jon Imber’s Left Hand (Richard Kane 2014). http://www.youtube.com/watch?v=Yacpqzgv8Wc
-Thanks CCALS for reporting on Jon Imber. http://www.ccals.org/PDFs/newsletters/Newsletter-2014spring.pdf
-This is an amazing preview of a documentary about renowned painter Jon Imber, who kept painting right through the end of his struggle with ALS, switching to his left hand, and then to a brush fastened to his head. His last painting was the week he died in April 2014. http://www.bostonglobe.com/metro/2014/04/24/jon-imber-artist-kept-painting-with-exuberance-face-als/bQen0EjAUKD2veEeXwPvpL/story.html
He had an unquenchable zeal for life and beauty, and was part of a loving family and circle of friends that supported him, literally, in his work, holding him up while he painted.
See http://www.jonimber.com for examples of his exuberant, colorful work.

Songs and Albums:

Hallelujah, Leonard Cohen
-also performed by KD Laing (Thanks, Kathy)

The Wind (2003) Warren Zevon.
-Zevon’s final album, recorded while dying of lung cancer, with his classic sardonic wit; Knocking on Heaven’s Door is heartbreaking

Dance In The Graveyards, by Delta Rae, on Carry the Fire

I’m Gonna Live Until I Die, Sixto Rodriguez, originally Frank Sinatra

Black Peter, by the Grateful Dead; also Ripple (Thanks, Jack)

 

Matt Hires, A -> B. This song popped up on Pandora today (9/1/2014). It echoes beautifully what I was trying to say in my poem Hyphen, down to the typographical reference for a title.

Essays:

Dudley Clendinen essay http://www.nytimes.com/2011/07/10/opinion/sunday/10als.html?pagewanted=all&_r=0 (with link to radio interviews)

A.S. Trillin, “Of Dragons and Garden Peas: A Cancer Patient Talks to
Doctors”, New England Journal of Medicine, 304 (12), pp. 699–701,
March 19, 1981.

Healing the healer: poetry in palliative care, Coulehan J, Clary P. J Palliat Med. 2005 Apr;8(2):382-9.
-Tthree aspects of healing are fostered by poetry: the power of the word to heal (and also harm); the skill of “negative capability” that enhances physician effectiveness; and empathic connection, or compassionate presence, a relationship that heals without words.

Tom Brazaitis of the Plain Dealer examples:
http://blog.cleveland.com/pdextra/2011/08/cancer_patients_are_willing_to.html
http://blog.cleveland.com/pdextra/2011/08/cancer_fight_new_fronts_new_we.html
http://blog.cleveland.com/pdextra/2011/08/when_coping_means_walling_off.html
Other approaches by writers/reporters: http://blogs.wsj.com/speakeasy/2012/05/30/beyond-the-bucket-list/
-Thanks Keith Epstein!

Podcasts/Audio Books:

Fresh Air 10/8/12 Tig Notaro, comedian, shares cancer diagnosis live on stage.
Fresh Air 8/10/12 (inverse!) David Rakoff, writer and comedian, also on This American Life incl. 8/16/12 in memoriam.

The Last Lecture, 2008, Randy Pausch, http://www.thelastlecture.com/ http://en.wikipedia.org/wiki/The_Last_Lecture

Richard Perl
Graceful Passages, Book, Audio book and music CD
http://www.amazon.com/gp/product/B004UICIQ2/ref=oh_details_o01_s00_i00?ie=UTF8&psc=1

Living with ALS: Joe — ALS Ontario http://www.youtube.com/watch?v=bP0DeisVHWM
Short clip about coping with the diagnosis and living – getting it done
Dr. Oz: End of life decisions http://www.doctoroz.com/videos/end-life-decisions-and-preparation

You’re not you, Michelle Wildgen – caretaker for woman with ALS.
http://www.amazon.com/Youre-Not-You-Michelle-Wildgen/dp/0312369522%3FSubscriptionId%3D0G81C5DAZ03ZR9WH9X82%26tag%3Dzemanta-20%26linkCode%3Dxm2%26camp%3D2025%26creative%3D165953%26creativeASIN%3D0312369522

Poetry
:
Endpoint and Other Poems, John Updike (2009)
-poems about the novelist’s struggle with mortality over several years, published posthumously as his last book http://www.nytimes.com/2009/05/03/books/review/James-t.html?_r=0
-from Richard and Rita Gollin: Here are the two most famous carpe diem poems in the English language, both written in the early-mid 17th century, the first by a clergyman, the second by a politician (and friend and aide of John Milton of “Paradise Lost” fame). Moderate Puritans both of them, though you wouldn’t necessarily know it from these:

Robert Herrick. 1591–1674

248. To the Virgins, to make much of Time

GATHER ye rosebuds while ye may,
Old Time is still a-flying:
And this same flower that smiles to-day
To-morrow will be dying.

The glorious lamp of heaven, the sun, 5
The higher he ‘s a-getting,
The sooner will his race be run,
And nearer he ‘s to setting.

That age is best which is the first,
When youth and blood are warmer; 10
But being spent, the worse, and worst
Times still succeed the former.

Then be not coy, but use your time,
And while ye may, go marry:
For having lost but once your prime, 15
You may for ever tarry

And then this one, in form a seduction poem,

To his Coy Mistress
by Andrew Marvell

Had we but world enough, and time,
This coyness, lady, were no crime.
We would sit down and think which way
To walk, and pass our long love’s day;
Thou by the Indian Ganges’ side
Shouldst rubies find; I by the tide
Of Humber would complain. I would
Love you ten years before the Flood;
And you should, if you please, refuse
Till the conversion of the Jews.
My vegetable love should grow
Vaster than empires, and more slow.
An hundred years should go to praise
Thine eyes, and on thy forehead gaze;
Two hundred to adore each breast,
But thirty thousand to the rest;
An age at least to every part,
And the last age should show your heart.
For, lady, you deserve this state,
Nor would I love at lower rate.

But at my back I always hear
Time’s winged chariot hurrying near;
And yonder all before us lie
Deserts of vast eternity.
Thy beauty shall no more be found,
Nor, in thy marble vault, shall sound
My echoing song; then worms shall try
That long preserv’d virginity,
And your quaint honour turn to dust,
And into ashes all my lust.
The grave’s a fine and private place,
But none I think do there embrace.

Now therefore, while the youthful hue
Sits on thy skin like morning dew,
And while thy willing soul transpires
At every pore with instant fires,
Now let us sport us while we may;
And now, like am’rous birds of prey,
Rather at once our time devour,
Than languish in his slow-chapp’d power.
Let us roll all our strength, and all
Our sweetness, up into one ball;
And tear our pleasures with rough strife
Thorough the iron gates of life.
Thus, though we cannot make our sun
Stand still, yet we will make him run.

Sadness
by Michael Blumenthal
Sooner or later it comes to everyone:
the beautiful prom queen who has lost a breast,
the Don Juan of the tenth grade who has
turned up impotent, the fleet chiropodist
who has developed a limp. Sooner or later it comes,
and you are never prepared for it quite yet,
you who had hoped to be spared through another epoch
of your rightful happiness, you who had always
given to charity. Like a gargantuan tackle
lumbering toward you, it comes and comes,
and—though you may double lateral all you wish,
though you may throw a perfect spiral
up the middle to some ecstatic receiver
and be blessed blue-green some night
by the ministrations of strangers—it will not
spare you. It comes and comes, inevitable
as sunrise, palpable as longing,
and we must go on
laughing it right in the face
until it learns to sing again.
“Sadness” by Michael Blumenthal, from No Hurry: Poems 2000-2012. Etruscan Press

***

To His Coy Mistress
-Andrew Marvell

Had we but world enough, and time,
This coyness, Lady, were no crime
We would sit down and think which way
To walk and pass our long love’s day.
Thou by the Indian Ganges’ side
Shouldst rubies find: I by the tide
Of Humber would complain. I would
Love you ten years before the Flood,
And you should, if you please, refuse
Till the conversion of the Jews.

My vegetable love should grow
Vaster than empires, and more slow;
An hundred years should go to praise
Thine eyes and on thy forehead gaze;
Two hundred to adore each breast,
But thirty thousand to the rest;
An age at least to every part,
And the last age should show your heart.
For, Lady, you deserve this state,
Nor would I love at lower rate.

But at my back I always hear
Time’s wingèd chariot hurrying near;
And yonder all before us lie
Deserts of vast eternity.
Thy beauty shall no more be found,
Nor, in thy marble vault, shall sound
My echoing song: then worms shall try
That long preserved virginity,
And your quaint honour turn to dust,
And into ashes all my lust:
The grave’s a fine and private place,
But none, I think, do there embrace.
Now therefore, while the youthful hue
Sits on thy skin like morning dew,
And while thy willing soul transpires

At every pore with instant fires,
Now let us sport us while we may,
And now, like amorous birds of prey,
Rather at once our time devour
Than languish in his slow-chapt power.

Let us roll all our strength and all
Our sweetness up into one ball,
And tear our pleasures with rough strife
Through the iron gates of life:
Thus, though we cannot make our sun
Stand still, yet we will make him run.

357. To His Coy Mistress. Andrew Marvell. The Oxford Book of English Verse

2 thoughts on “A terminal disease cultural archive

  1. Pingback: Jon Imber | innovationlifelove

  2. Listening to “Black Peter” and watching the sunset from my bedroom window was so beautiful but made me very sad.

    “Black Peter”
    Words by Robert Hunter; music by Jerry Garcia

    All of my friends come to see me last night
    I was laying in my bed and dying
    Annie Beauneu from Saint Angel
    say “the weather down here so fine”

    Just then the wind
 came squalling through the door
    
but who can
the weather command?

    Just want to have
a little peace to die
    and a friend or two 
I love at hand

    Fever roll up to a hundred and five
    
Roll on up
    
gonna roll back down

    One more day
I find myself alive
    
tomorrow 
maybe go

    beneath the ground

    See here how everything

    lead up to this day
    
and it’s just like
any other day

    that’s ever been
Sun goin up
    
and then the 
sun it goin down

    Shine through my window and
    
my friends they come around

    come around

    come around

    People may know but
    the people don’t care
    
that a man could be
    
as poor as me…
”Take a look at poor Peter

    he’s lyin in pain
    
now let’s go run

    and see”

    Run and see
    
hey, hey,

    run and see

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    Listening to “Ripple” has always given me a feeling of cosmic continuity.

    “Ripple”
    Words by Robert Hunter; music by Jerry Garcia.
(“Ripple” composed and written by Jerry Garcia and Robert Hunter.

    If my words did glow with the gold of sunshine
    And my tunes were played on the harp unstrung
    Would you hear my voice come through the music?
    Would you hold it near as it were your own?

    It’s a hand-me-down, the thoughts are broken,
    
Perhaps they’re better left unsung

    I don’t know, don’t really care
    
Let there be songs to fill the air.

    (Chorus)

    Ripple in still water

    When there is no pebble tossed
    
Nor wind to blow

    Reach out your hand if your cup be empty
,
    If your cup is full may it be again,
    
Let it be known there is a fountain

    That was not made by the hands of men

    There is a road, no simple highway

    Between the dawn and the dark of night

    And if you go no one may follow,
    
That path is for your steps alone

    (Chorus)

    You who choose to lead must follow
    
But if you fall you fall alone

    If you should stand then who’s to guide you?

    If I knew the way I would take you home

    La dee da da da,
    La da da da da,
    Da da da, da da, da da da da da
    La da da da,
    La da da, da da,
    La da da da,
    La da, da da.

    Reply

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