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Haus LebensWert is a philanthropically developed and supported facility in Cologne, Germany where patients may receive oncology services free of charge.  An integral part of Haus LebensWert’s vision and mission is to vigorously help cancer patients cope with life both during treatment and afterwards.  Another key component is the use of alternative and complimentary therapies.  These therapies are made available to patients in addition to traditional measures as part of a seamless whole.   Examples include psycho-oncology, art & music therapy, gymnastics and other exercise, voice instruction, Feldenkrais training, Nordic walking, dance therapy, massage and aroma massage, Tai-Qi, Qi-gong and acupuncture.   The Haus LebensWert, which complements a more traditional hospice, has been well received by both patients and practitioners, including those who refer their patients from outside (Hematology Am Soc Hematol Educ Program. 2009:320-5).

Critics of “complimentary and alternative medicine” (CAM) frequently complain of a double standard, and a lack of rigor in its evaluation.  Some feel this looseness encourages bloat and charlatanism, and risks distracting patients and practitioners from the path to “good outcome.”

“Academic medicine integrates three of the most honorable human activities: treating the ill, teaching, and research. The quality that all three share is persistent quest for truth. However, there is reluctance of academic medicine today to openly defend scientific truth by challenging the arguments and the very existence of “complementary and alternative medicine” (CAM). There is no sound proof of CAM effectiveness, no hypotheses on the mechanisms of their action, nor scientific reports testing them. The fact that patients are charged for these “healing” activities makes CAM a plain fraud. With these facts in mind, the name “complementary and alternative medicine” is undeserved and misleading. CAM advocates maintain that CAM should be recognized precisely because it is widely practiced and very promising, that it has a special holistic/human approach, and works at least as a placebo in situations where medicine can do nothing more. As it seems that the public interest in paramedicine will only grow stronger before it grows weaker, scientists must raise their voice and question the truthfulness of CAM more openly.”
Croat Med J. 2004 Dec;45(6):684-8.

While a truth-centered paradigm is difficult to dispute, there is more than scientific truth at stake in the quest for human understanding.  There is also existential truth.  While physician-scientists optimize therapeutic regimens by evaluating their effects on controlled trial populations, each individual patient attempts to grapple with his or her radically changed reality both in terms of life, and death.  Quantity—be it months of survival, tumor size, or fraction cured—can be measured with increasing accuracy and predictive value.  Quality can’t be so easily parameterized.  Moreover, even attempts made to evaluate “quality of life” tend to fall short because experience transcends subjective criteria when they are too rigidly circumscribed.  Patients exist within the larger communities of other patients, clinicians, family, and the omnibus of culture.  If society views the sick as mechanisms in need of repair, and devalues anything regarded as “touchy feely,” then those in charge will cut the funds that allow physicians to spend time talking with patients or considering the larger life outside the body, while adding to the already glutted ranks of surgi-centers and MRI scanners.  Certainly the possible advantages of reinvigorating the art of medicine, or even expanding it to include real art, such as expressive writing, or speaking, as therapy,will be viewed as unworthy of “serious” exploration.  This is what has happened so far.  The impersonal and alienating experience of illness is nearly a truism, at least in the U.S.

Hospitals, especially large referral centers, can be daunting and soulless places.  As we move necessarily towards more “cost-effective” healthcare it will be important not to lose sight of the fact that quality and quantity exist to a large degree as orthogonal axes.  Designing healthcare to have a more empirical and inclusive approach to alternative healing strategies assures a better chance at quality of life, and should be encouraged as long as these don’t induce patients to forego proven treatment.   A life of fear and despair may be nearly as much a lost life as for the patient who dies of his or her disease.

Haus LebensWert, by the way, means House for a Life Worth Living.

Understanding how a patient makes sense of chronic or disabling illness can be critical to the effective treatment of that illness.  Repairing the body doesn’t necessarily repair the life. Patients must confront changes to their bodies and in how they live their lives, psychological dimensions of disease physicians and allied practitioners have appropriately tried to address more vigorously.  But human beings, perhaps uniquely, not only live in the here and now but also in a larger narrative of their existence that includes their past and also projects a future.  Our identity and self-esteem are not only tied up in what we see in the mirror, but in what others see, and in who we see ourselves becoming: our plans and expectations for ourselves in the context of a long and healthy life.  All of this helps us tell the story of who we are. The term “biographical disruption” has been applied to the pernicious ability of disease to damage this narrative.   To fully treat disease one must also treat the damaged story.  There is evidence that poetry can be part of such treatment, allowing patients to creatively frame and perhaps modify their story through dialogue with themselves and with others.

Below is a poem written by a young woman afflicted with severe arthritis, reprinted from Cases Journal (Cases J. 2008; 1: 153).

Where have I gone?

Where’s the woman who weighed less than 9 stone?

Who wore a dress size 12 and didn’t need to wear shapeless clothes or jogging suits?

Who had shaped and tidy eyebrows that would complement her latest hair colour and style?

Whose painted nails, with manicured hands and feet, were perfect for holidays in the sun?

Where’s the woman who had a vocation not just a job, but who exists on benefits, a step away from poverty?

Where’s the woman who owned her own home that gave her safety and privacy, it was her pride and joy?”

Where’s the woman whose hobbies include travel, gardening, decorating, furniture restoring, sewing, reading and studying at home?

Here I am and life before my impairment has gone, the only thing I can do is hold a pen with a special grip and writing is agony.

Where has she gone?

Where has she gone?

WHERE HAVE I GONE?

Do you see me?

How can you ever know me, when all you see is my chair?

My limitations are all you see and you say they complicate your life.

Will you ever see the deep pools of love in my eyes for you?

When you half close yours with pity and turn away from me.

The beating of my heart in expectation of your closeness isquickly cooled by your fleeting hug or, worse, patting my shoulder.

I wait in anticipation remembering the taste and softness of
your kiss, you offer me a warm ‘peck’ on the cheek.

I smell your aftershave … you say I smell clean!

I remember running my fingers through your hair,

Ripping buttons off your shirt but that’s difficult when you
stand behind me pushing my chair, we can’t even hold hands anymore.

The power of my emotions makes me feel strong,

Then I catch that pitying look in your eye,

They die in my heart.

I do not speak, my smile fills my face but you will never know …

You’ll never see the real woman who is me

Who sits and is seen by the world framed by a wheelchair

Cut off emotionally just because I cannot stand or walk.

Thank you

Thank you to those who take the time to listen to difficult and unclear speech, for you help us to know that if we persevere we can be understood

Thank you to those who walk with us in public places, ignoring stares and whispers from strangers, for in your friendship we find enjoyment, laughter and happiness

Thank you for never asking us to ‘hurry up’, but even more special is you don’t snatch our tasks from us or offer ‘Care’ in such a way as to make us feel that we are still children, with no control and respect

Thank you for standing beside us when we enter new experiences and try new adventures
Though our success may be outweighed by our failure, the experience will stay with us forever and there will be many occasions when we surprise ourselves and maybe even you!

Thank you for asking for our help and expertise,
As self-confidence and awareness come from being needed by you and others

Thank you for giving us respect

You acknowledge our value as experts in our fields and that we require to live with equality in society

We shouldn’t have to ask or have laws to enforce it or remind you

Thank you for assuring us that the things that make us individuals are not our medical impairments, as everyone has those and they don’t define ONE’S SELF, it’s people’s attitudes that create barriers that exclude us from you.

Treat us as we treat you.

It is now a common practice for first year medical students to take part in a ceremony honoring the donors of cadavers used in dissection for the teaching of anatomy. The manner of the students’ participation is up to them; the reading of poetry, including original poems is not uncommon.

Here is such a poem by Fiona Horgan, reprinted from Yale Journal of Biology and Medicine.

                                                                 

Lab 16

Today’s session begins just as those gone by.
As my labmates begin to unfurl the gauze and commence our exploring,
instinctively, but unbeknownst to the others,
I am quick to assume my self-appointed duty of rewrapping,
carefully ensuring that her hands are not exposed.
Is this naïve, knowing that today would come
and I would have to spend my entire afternoon focused on them?
And why, after so many hours with her,
so many delicate procedures,
does looking at her hands still stir unparalleled emotion in me?
“Trace the radial artery . . .”
I only see hands that still possess the pallor of life,
nails bearing the remnants of rose-colored polish.
Did a loved one tenderly paint them?
And did they hold her hands as she faded from this life?
I search for her pulse.
“Divide the transverse carpal ligament . . .”
Isee my grandmother’s hands.
Hands that expertly smoothed wrinkled sheets.
Hands that pressed coins to buy sweets into her grandchildren’s eager palms.
Hands that wore a symbol of my grandparents’ love for 56 years.
I trace the fine lines on her palms.
“Examine the thenar muscles . . .”
I see my mother’s hands.
Hands that nurture children when they are sick.
Hands that dance along piano keys.
Hands that feed and clothe the homeless.
I smooth her wrinkled skin.
“Identify the tendons of the superficial and deep digital flexors . . .”
I look at my hands alongside hers.
They are the tool with which I will first touch my future patients.
Each time I lay my hands on those I hope to heal,
I will remember hers.
I reach out and fully grasp her hands.

                                                                  –Fiona Horgan

(From: The 2008 Anatomy Ceremony: Voices, Letter, Poems
Yale J Biol Med. 2009 March; 82(1): 41–46)

I think part of the problem with modern “criticism” is that much of it isn’t really criticism, not in the traditional sense. There are few critics today like T.S. Eliot (not going back too far), who wrote about poetry from the standpoint of a core philosophy he had engineered. I don’t particularly care for Eliot or his unpleasantly biased point of view. But he did have intellectual rigor when it came to criticism. We do have a few individuals, all parochial in the end of course, like Eliot, and academic, like Eliot–these are the drawbacks of such criticism. Helen Vendler comes to mind for one.

Unfortunately, even here one finds a kind of “kingmaker” apparatus, where the critic anoints those poets deemed worthy of “serious” consideration in our time. Less attention is paid to poetry in general, and the qualities that make it poetry, or (less often) great poetry.

Most of what passes for critique,however, is the “book report” capsule review one finds in literary journals and newspapers. Here, I fear, it is difficult to disentangle true criticism from the commercial process. Newspapers and magazines as published instruments have a natural incentive to favor books they can praise since these are books people might buy. Poetry is desperately undervalued in our culture and it’s the poets who are desperate. Desperate to be heard and desperate to be read. The poetry world is very small, insular and incestuous. Most of those who read verse also write it. Is it a great surprise that few are willing to be fully candid in their reviews? It’s far more expedient to be circumspect and political. It’s also easier, since the evaluative criteria are of course subjective, and few critics write from a core philosophy they can articulate, never mind defend. Knowing who your friends are becomes the one constant. Worse, those who resist this tendency often write with such scathing arrogance that their example hardly begs others to write negative reviews and join them on the “dark side.”

Clearly there is bad poetry being written. Every book contains some, or nearly every book. Some books, even by good poets, are nearly all bad. We all know about the complacency that afflicts the “major” poet in mid to late career, and the Emperor’s New Clothes effect, with regard to his/her work. The same applies to the latest fad offering from the latest “iconoclastic” hotshot. Unfortunately we have become so accustomed to our little world of vanity and desperation that we can’t tolerate the truth, only occasional ad hominem rants. Here’s to more integrity, intelligence, and rigor in criticism, but I’m not holding my breath.

(In response to Travis Nichols, The Poetry Foundation, Should Poetry Critics Go Negative?)

This will play right into Obama’s hands. Humanitarian, compassionate. They’ll use this
to, to burnish their, shall we say, credibility with the black community, the both
light-skinned and dark-skinned black community in, in this country. It’s made-to-order
for him. That’s why he couldn’t wait to get out there, could not wait to get out there.

                                                                                     –Rush Limbaugh

A man carries on in the ruins, carries an old woman
Clear of the broken stone, everything broken,
The world indescribable simply because it’s smashed
Beyond recognition. We talk
Of magnitude–well, on the scale of misery this weighs
More than everyone’s imagination. The world comes
Down to this, comes down like building blocks,
The camera closing in
Until you only see his face.

We keep expecting that other aftershock
We hope will cause the right stone to break
And with a softer resonance as from a body
Trembling joyfully, all by itself,
Because a black president
Is more an event than a man, belongs
To the simple facts we gather together
And call a world.
                                        We stand poised, greased and waiting
To leap headfirst into the waters
Of change, which are warm like the Caribbean
Though we know the help will be tepid,
Less than close to enough because of pictures
Like this, the people in them who didn’t choose to be,
Who lack the luxury to decide whether they care
For the color scheme.
                                                 But still they visit
The television that is our president,
Always alone or in groups still small enough
To distinguish those in them
Which is how survival happens, even triumph.

So he appears wretched and still humbly, oddly proud
Carrying his wounded neighbor
Like something essential, bond receipts, a television,
A pail of food, or water
As in that painting by Lois Mailou Jones
She called The Water Carriers,
Too few pipes after all, too little cultivation
On the little voodoo island
That bears the brunt of our curses
Because it freed itself. Jones carried herself
Like water, entered contests anonymous
As water so they wouldn’t know
She was black.
                                   Her painting doesn’t show you
The river, not even the little bit by her side,
Just a bright hat and a face that resembles hers
And ours. Some day there will be people like that
On Haiti, people whose misfortune will move
All of us like the earth. Everyone will act
Indifferent as a river, which can’t tell its own
Smooth stones from a hand or a mouth.

                                                          —David Moolten

Kid’s bangs blending with tall grass, we watched
Them cross the lot, some stumbling already, brush
Aside the door, entering a place that wanted
No part of us. What went on in there?
We wondered and wished we could know and better
Than know. The red slab swung wide then slammed,
And like the little match girl’s lit up reverie
We glimpsed them, wide backs inert as stone, each bent
Like Rodin’s Thinker, mesmerized by a glass.
We giggled like girls with our Vienna voices,
Like bells at an even greater distance
And Sibby shifted on his groaning high chair
And shouted wide mouthed and generous as a man
Could afford to be with adversaries that small.
What went on in there? The fact was we had
The facts, and they made no sense like the sounds
From a piano when you bang on it
Because you’ve heard the music pour and hate
That you can’t make it. Once in the lull before
The factories emptied he played baseball cards
By our rules, matching color or team,
Winner take all, Sibby like a human
Cerberus, one thick-necked dog face enough.
The only time he let us in the place
Hadn’t opened, a barren marvel, the mopped
Still spotted floor light flung itself across,
The damp bar filling the room like that table
In the butcher shop where they divvied up
What we would never have recognized
In the soft white paper our mothers brought home.
That was the summer he flew to Saigon,
The summer at a clam bake in Maine
I sipped my father’s beer, because he let me
And because I wanted to more than anything,
Took the bitter plunge, just so I could say I did.

                                                          —David Moolten

When I get off the phone with my wife I think
Of DNA, the great lengths that don’t matter,
That even its magniloquent scholars call “junk,”
So much that if you listened to the language
Of life you’d hear the ums between words, confabulation,
What we say when we’ve nothing to say,
As when she calls at lunch and asks How are things?
And I claim, Fine, as I would with the building
In flames. We ping pong pleasantries for five minutes
Then I return to putting out the day’s fires
Only now pondering lives we spend mostly
Apart just to make enough to have a life,
Something like divorce with marriage spliced in
Mornings and nights. I.e. she’s a stranger
And how do I know she’s not disbursing government
Secrets in coded want ads, begging exegesis
From her cult’s high priest, or running a house
Of ill repute by the shipyard? Mingling
Our loose strands, we become a stranger strangeness
Though scientists have begun to guess
At the hidden purpose in those stretches
Of fallow chromosome they also call introns,
A refreshingly arcane and important name
I attach to this break I take from a day
That started as the pieces we call hours
And put together by staying whole. The part
Where the phone rings isn’t the story’s moral,
Just abiding distraction, as if Sisyphus let go
Of the stone whose rolling went unnoticed
As he flipped open his cell and told his wife
What would bore anyone else, scientists
For instance studying mating rituals in fruit flies,
Or G-men eavesdropping through a wall.
But such twaddle sufficiently scrutinized turns out
To be a cipher for life, itself the redundant
Though universal meaning, as if at the most
Intimate level, nothing is everything.

                                                          —David Moolten

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