May 5, 2006

Chapter 19

Things happen
when a person transcends all the reasons
for not acting on behalf of another --
whether it's fear, anxiety, repulsion, or ignorance.
Something happens in that interchange
that is incredibly creative

See that blonde woman in the middle of the photo? That’s Jeanine Young-Mason. In Iraq. Talking to Iraqi nurses. Teaching at the School for Nurses in Baghdad. In 1987. Think about it.

The wars we have fought and won. Against polio, against smallpox, against infant mortality, against famine. And there are many more such wars we could win. There are brave people who choose their wars carefully and go to the front lines where there are the most casualties; they win wars against the diseases that are enemies of the entire human race.

Their victories endure forever, around the world.

I got up at 4:00 a.m. In early June, that's an hour before sunrise. The hour of the wolf. The hour of the most deaths and the most births. The hour when the enemy attacks. A most excellent time to go walking in the forest.

I took mirapex, selegiline, and levodopa and waited for the impact. At 4:30 a.m. I went outside with a flashlight, but I was walking like one of those new Japanese robots, mobile, but stiffly mechanical. And try as I might, I could not stop dragging my feet--I could not lift my feet—I stared at my feet and cursed them and cajoled them, and tried kicking things, but they just would not listen. My muscles were either unable, or unwilling, to move the way I wanted them to. Dangerous to go walking in the forest where there are so many things to trip over. So I went back to the house, by which time the levodopa was kicking in, making me a highly agitated speedy robot, so I took another hit of selegiline. Sweet Sister Selegiline, put your cool cool hand on my head. And I put another hit of Mirapex in my pocket, just in case. You never know when a hit of Magical Mysterious Mirapex may be just the thing to pull you through.

I walked in the forest for an hour, sometimes in silence, sometimes listening to music on my earphones. Dylan was singing “They don’t like you to be so free.” I checked out trees that I could cut down for firewood. My feet did exactly as they were told. I could have run a race.

I went back to the house around 6 a.m. and turned on the computer. This website was getting a lot of hits. They go in waves, so there is nothing special about that. But it was strange that, whereas most visitors check out one or two chapters that interest them, many of the recent visitors were staying on the site for a very long time, reading every single page. That’s a lot of reading, a lot of time. What for? Who are these people? Errr, whassup, doc?

So I queried Google Analytics. The map over-lay showed that these visitors were in clusters – highly concentrated in a few cities. I dug deeper into Analytics and it showed that the hits were coming from inside major teaching hospitals, and from the neighbourhoods around them. I queried Analytics again, and found out that these visits were coming from a referral in a magazine I had never heard of: Clinical Nurse Specialist.

From there, Google led me to Jeanine Young-Mason, EdD, RN, CS, FAAN, Distinguished Professor Emeriti, School of Nursing, University of Massachusetts.

And her message was:

“It was not surprising to me to learn that there is a movement across United States now to provide music and dance classes for those with Parkinson's disease.”

A movement across United States--that's the kind of talk I like to hear. It is actually happening. To provide music and dance… Holy Cow! Did you read that? People are actually talking about it? That’s great.

There are many millions of people in the world who have Parkinson's Disease. And they have spouses and parents and children and friends and neighbours and loved ones and care-givers and doctors and nurses and scientists and pharmacists... and dancers. Millions of people are involved in this.

A startling thing about having Parkinson’s is the way other people react.

The ones who try to break down your spirit are just doing what they always do. They will make bold moves against you, thinking that you are in a weakened state. In business, there are even a few competitors who have called some of my clients, telling them that they should switch suppliers, instead of taking the risk of relying on someone with Parkinson’s. It’s like being followed by a pack of jackals while crossing the desert, with vultures circling overhead, waiting for the Parkinson’s patient to stumble and fall. The same ones tell you business is like war. It’s not. And if it was, they would throw the first rock and then run and hide. You know the type.

And there seems to be some sort of vested interest in portraying the world as being all violent and wicked and corrupt, and everybody is a victim, and nobody cares. And news is not news if it is not about something grim or gruesome. So you get the impression that the streets are full of murderers, deadly diseases are spreading like wildfire, there is no one you can trust; it’s all begrudgement and survival of the most vicious. Hatred, envy, war, and rumours of war.

Looked through the papers
Makes you want to cry
Nobody cares
If the people live or die

And it is easy to add a bit more to the despair, it is easy to curse the darkness while blowing out every candle that anyone dares to light.

I know you've heard it's over now and war must surely come, the cities they are broke in half and the middle men are gone. But let me ask you one more time, O children of the dusk, All these hunters who are shrieking now, do they speak for us?

Thank you again, Leonard. I don’t know what I would have done without you.

Having Parkinson’s, the most stunning discovery is when the clouds part, rainbows appear, the heavens open and angels dressed in white descend ladders, singing praises to the Majesty of Creation. It is very surprising the first time you see it, but then you start to realize it happens all the time. I’m not saying it becomes routine; I am saying you start to join in the singing.

From this broken hill
All your praises they shall ring

is not for mortals? Well, then, if these be not mortal, then there are a lot of angels and saints. Having Parkinson’s, we have a vantage point to witness the generosity of the human heart, the beauty of the Truth and the truthfulness of Beauty, the good will among people; the surprising dedication of those who consecrate time and soul to doing saintly things and magical things and effective things, working bravely and fiercely and lovingly on the front lines where the casualties are the heaviest. As Toulouse Lautrec said in Moulin Rouge --- it is spectacular, spectacular.

From this broken hill
I will sing to you

Where do all these angels come from? Don’t they read the newspapers? This is supposed to be a cynical society, a “me, me, me” generation. Fear and contempt and greed and war and rumours of war. But let us bring forth witnesses who have glimpsed the moment when people in despair start to weep with joy, when a painter swoons in front of a Vermeer, when a first responder runs into a building that everyone else is fleeing, when a nurse works the night-shift in an understaffed emergency ward, when Parkinson’s Apathy and Parkinson’s Anxiety are switched off in an instant, and people who can hardly walk get up and dance to the Beauty of it all. We are surrounded by a cloud of witnesses There are millions of such witnesses; you can hear the angels sing from above. And you can learn to sing with them. As Jeanine says, compassion is substantially a learned behavior, and hope is contagious.

All of a sudden, that night, she turned to him as he paced the hallways of the nursing home, silent and locked inside himself, alone and wounded, and she said, "Do you want to dance?"

"Oh yes!" Was the reply.

Thereafter when she was on duty and free the two would dance together.

Dance me through the panic
Until I’m gathered safely in

Jeanine Young-Mason is a nurse. And a teacher of nurses. Teaching nurses to combine art and science; compassion and rigorous preparation. She has seen it all. There are hundreds of stories she could tell.

She has been writing in the Clinical Nurse Specialist for 18 years. She has published a prodigious amount of original work; books, articles, interviews.

She says: "compassion is the essential topic in medicine and nursing. A lot of people confuse compassion with empathy, pity, charity, or this warm, fuzzy feeling when gets when one sees someone suffering and wants to be closer. But compassion is tough stuff. Things happen when a person essentially transcends all the reasons for not acting on behalf of another -- -- whether it's fear, anxiety, repulsion, or ignorance. Something happens in that interchange that is incredibly creative, so when people are compassionate on behalf of those who are suffering, they are refreshed. Aspiring nurses and doctors should come to terms with the cost of it, and the rewards, and if they don't feel called to overcome indifference, that it's far better that they pull out. Don't choose a profession which absolutely requires that you be prepared for the task of human relations. Never mind this doctor-patient or nurse-patient relationship -- it's about human relationships and what it costs to be present for other individuals in a vulnerable state." (“The Interview”, John Koch, Boston Globe).

She teaches tough compassionate nursing, and the connection between art and health.

Some of the books she has written: the titles alone say a lot:
The Patient's Voice: Experience of Illness (in English and Japanese)
States of Exile: Correspondence between Art, Literature and Nursing
21 Words For nurses
Clinical Nurse Specialist: Journal for Advanced Nursing Practice
Critical Moments: Doctor and Nurse Narratives and Reflections
And she teaches the expressions of compassion in Kurosawa’s Ikuru, the understanding of suffering and compassion expressed by Sophocles, the body language of Rodin’s sculptures, Tolstoi’s Death of Ivan Ilych; and consoling the inconsolable.
Her website :

In case you weren't listening:
"Compassion Is Tough Stuff"

Jeanine Young-Mason has hundreds of stories to tell; the one I chose to relay to you is about Parkinson’s. One of her young students, wanting to become a nurse, but didn't have enough money to pay room and board and tuition in the school of nursing. So she volunteered to take the Certified Nursing Assistant course in a local nursing home. There, she worked the night shift. A volunteer, in an institution for people expecting to die soon.

Jeanine wrote this:

… “Finding that there were particular stretches into late evening and early morning when most residents were sleeping, she conversed extensively with those who could not sleep. Over time she and those residents together wrote life story sheets she shared with nursing staff.

Late at night and in the early mornings They would write life story sheets together

One gentleman, in particular, had great difficulty sleeping and he would pace the halls continuously with some difficulty. He seemed to her so unhappy. The student would walk alongside him up and down the corridors and encourage him to speak. Finally one night he told her: he'd been a professional dancer and had taught ballroom dancing for decades at an Arthur Murray studio in New York City.

That night, she turned to him and said, "do you want to dance?"

"Oh yes!" Was the reply.

Thereafter when she was on duty and free the two would dance together. He improved considerably, talked to people, quit pacing the hallways all night, and, like a gift from an angel, he was able to sleep.

Summary: just in case you missed the play, there were 6 acts. Pay attention; you will be called upon to play both of the lead roles in the play, first as the patient and then as the care-giver, and we are going to rehearse a lot before opening night. Of course you may improvise at will, but do not neglect to portray the original story. It is a sacred story.

[1] She volunteers to work the night shift in a home for the desperately ill. One man, with Parkinson's, speaks to no one, and paces up and down the hallways all night with considerable difficulty, as he can barely walk. He is closed in on himself and he is wounded and alone. So what does she do? She accepts his silence and goes with him. Walking up and down the hallways in the middle of the night, in silence. Night after night.

(2) Slowly, he begins to answer her gentle soft-spoken questions. She gets him to begin talking about his life. And then one night he tells her he had been a dancer and a dance teacher, in New York City, before he got Parkinson's. The disease had taken away his definition of himself.

(3) And here is the moment it happened. She did not fill out a form or make a report or even wait for further conversations. Following her instincts and training, she asked him if he wanted to dance.

(4) Yes he wanted to dance, and so they danced every time she was on duty.

(5) Many of his Parkinson's symptoms disappeared immediately. The dreadful Parkinson's insomnia, the tortured and anguished nights, lying in sweat and saliva with your face turned to the wall, trembling and pained, unable to sleep, exhausted at sunrise…

Suddenly he could sleep like a baby. A major sympton could be switched off like a light switch.

And the Parkinson's Apathy--not caring about anything or anyone, not caring even about your own life--suddenly the apathy was gone. The Parkinson's depression, the Parkinson's isolation, the refusal to communicate. All of those symptoms stopped, from one day to the next. He still had Parkinson's, he still had balance problems, he still had mobility problems, but his definition of himself came back alive. He packed up his bags and went home.

(6) Dear Budget Deficit Authority in Charge,
Total Cost to the medical healthcare system: $0
Total savings to the medical healthcare system: substantial
You do the math.

Let your mercy spill
On all these burning hearts

Have you been listening to the prophets?

One of the prophets describes a woman who rides the drifts like an escaped ski, her course is the caress of the hill, her track is a drawing on the snow in a moment of its particular arrangement with wind and rock. Something in her so loves the world that she gives herself to the laws of gravity and chance. Far from flying with the angels, she traces with the fidelity of a seismograph needle the state of the solid landscape. She is at home in the world. She can love the shape of human beings, the fine and twisted shapes of the heart. It is good to have among us such balancing monsters of love.

North View
Oil on canvas by Sören Dawson

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