The Anthropology of Affliction

 I have had to grapple with the image of such a magnificent human being, most of my medical life.  I couldn’t be what he was.   He was stellar in every way.  He could function on almost no sleep, and had the vise-like grip of a photographic memory and the ability to brilliantly work out both diagnosis and treatment plan while holding the patient’s hand and asking them what they ate for breakfast, and who took care of them and brought them to the clinic.  And also figuring out how to get the medicine he intended to prescribe delivered to the patient.   He understood poverty and illness, he understood that the sick are poor, and the poor are sick. The book Mountains Beyond Mountains, about Paul’s life, came out in 2003. I was in the Peace Corps in South America from 1972-74. I started practicing OB-Gyn in 1990. I did not have his personal charismatic model or his ability to use the language of liberation theology in the early years. But once I knew about him, I knew he existed, and that his way was TRUE. It was ballast against all that is wrong in medicine, and all the barriers society sets up. I truly hope, as did his college roommate John Dear, that he is canonized, and also named a Doctor of the Church. Because he changed the world! And he did it like St. Francis did– with love and joy, not out of a sense of duty. I loved that he said he could sleep when he got to Cuba, because everyone there had a doctor. Having a doctor you could call on was the gist of what he wanted to make possible. And a good doctor, who wanted to save your life, with dedication and compassion.
He grew up in poverty, living on a bus his dad drove around,  for a lot of his childhood.  That he made it to Duke and then Harvard was a miracle.  He didn’t get to go to Vienna.  He didn’t study music or go to the opera.  His friends were the best in each field, and the most creative minds in our time, full of passionate energy.    
But we are not called to be who he was, we are just called to be inspired by him; to allow what he showed us about how we could be more fully human, more engaged and compassionate.  One of the most poignant chapters in Mountains beyond Mountains is when he marries Didi, and they have a child, and he says to himself that he must not love his own child more than all the children he has cared for.  He grapples with the limits of how much we can love, and whether we can morally love our own families more. And I learned from that question that we all have to love whom we love, the best we can.  Simply trying to do the best we can, without judging ourselves, without torturing ourselves with questions about quantity and quality.  I think his faith was what gave him the ground for those decisions, to just do the best we can.  Putting the outcome in God’s hands, but doing the best we can.  He didn’t waste time with second-guessing and self-doubt.  He understood very truly the limits we all have to function within.  He had enormous energy, and some people don’t have even a quarter of what he had.  But they are just called to be who THEY are, not to be something different.  That was part of his brilliance.  Jim Kim was a strategic systems thinker, and he could see the way through, to get the medications made in a less-expensive way.  He wasn’t focused on the individual patient the way Paul was, and it was brilliant that he did what HE could do to help.  It changed the world!  

Paul inspired each person to give what they could give.  It was like loaves and fishes, in so many ways.  Here is the poem I wrote about the work Jim Kim MD did in the Siberian prison camps, where both TB and AIDS were rampant, and the Soviets didn’t want to have to spend money to treat prisoners. A travel fluke made him have to deal with the Russian generals, instead of Paul. He had a karaoke machine, and he sang to them!

THE SNGING GULAGMEISTERS

(For Jim Kim, MD)

They were swilling vodka

And cared nothing for the Siberian prisoners.

It was winter

Like Varykino in Doctor Zhivago

Snow-lace and bear rugs

Wolves howling in the foothills.

He brought out the karaoke machine, 

And hoped for the best;

Flushed with vodka, 

Singing “My Way” with the Sinatra swing.

While spreadin’ the news,

Death and dyin’;

Grim not glamorous;

Siberian prisons

Full of T.B.

He wanted to treat the prisoners

On behalf of mankind, 

He sang to the generals.

Men in olive drab,

With chests full of medals

And flushed cheeks

Began to join the minister,

Whose clear baritone

Led them in a Russian ballad, 

Answering song for song;

And a miracle happened.

They said yes, 

To this most improbable idea;

Treating the prisoners with T.B.

In the gulags, 

Something good for this Earth.

Published in 2007, in Walking on Stars and Water, by Martina NIcholson MD

(available on Kindle, or contact me for a book)

THE DEATH OF THE MANGO LADY

(FOR PAUL FARMER, MD)

The ladies in the little overturned truck

Spilled like mangos onto the road.

The mangos, in rainbow sherbet colors,

Like sunrise and sunset in Haiti,

Spilled out all over the road,

Spilled and splattered open,

Their soft apricot and coral juicy flesh

Sweetening the dust,

A whole months’ wages lost.

Grangou, grangou:  hungry children

Scrambled to retrieve the unbroken ones;

And the mango ladies

Holding their moaning mouths

Watched

The driver lay a piece of cardboard

Over the body of their friend,

Her legs and feet still uncovered.

Surrounded by mangos,

An altar offering– 

Fruit of the world, 

Suffering of the world,

Women on their way to market
Waylaid by death.  

Squatting by the roadside,

Watched by the hungry children,

Moaning;

Stopping the rhythm of daily life

Trying  to get enough

Food for the children;

Stopping to grieve,

Broken open 

Like sunrise and sunset

All over the dusty road.

Published in Walking on Stars and Water, 2007, by Martina Nicholson MD

DONKEY AMBULANCE

(FOR PAUL FARMER, MD)

Whimpering whispering,
”I am sick, I am hungry”

 Rises like steam from 

The not fast ambulance, as it  

Comes toward us with the child-woman 

Groaning and vomiting,

Feverish and swollen- bellied,

Father and brother and spouse 

Walking alongside the narrow pallet. 

No one is sure whether she can be saved,

No one is at all sure

Whether there was sorcery

Or bad luck,

Or what is happening to her.

The donkeys plod along

Pacing themselves on the road.   

I think it is appendicitis,

I think she needs surgery,

I think and say, “bring the lamps”

Get her onto the table,

Call the operating team.

She is moaning,

Her lips are trembling and blue,
I am still listening

With total concentration

To her belly; as I bend over with

My forehead pressed to the fetoscope, 

Listening for the tiny thump-thump

Quick- paced rhythm of a fetal heartbeat.  

The donkeys stand.

They stand with their heads lowered,

Patiently,

Waiting for someone to feed them.  

Published in Walking on Stars and Water, 2007, by Martina Nicholson MD

THE ANTHROPOLOGY OF AFFLICTION

(FOR PAUL FARMER, MD)

Poverty and AIDS;
While standing at the blackboard,
What I was going to say before I heard
That hacking Tubercular cough from 
That hungry skinny patient,
Leaning down, squatting against
The filthy wall in this clinic
With Mother Hubbard’s cupboards.

People in the first world keep talking about choices.
These people have no choices;
Ignorance and hunger and sickness
Are their daily fare.
Grangou, grangou.
Hungry, hungry.

Here there is no way to hide
With existentialist bullshit
The truth about the hunger.

AIDS is the lurking shadow
If you sell for a pittance
The access to the vagina
Just to be able to feed the hunger.

My mind goes around the mouth
Around the vagina
Around the swollen belly
of the kid in the middle of the room.

What I was going to say
Before:
About affliction
About choice, 
Getting swallowed up in the hunger. 

Published in Walking on Stars and Water, 2007, by Martina Nicholson MD

A reflection on Pregnancy Losses

One of the puzzles in life is why people have been so reticent to talk about miscarriages.  They occur in 20% of pregnancies, usually before the 10th week.  Most of the times, now that genetic studies can be performed on the fetal tissue, it is due to a congenital problem which stops the growth, makes it impossible to go on.  Like a house which is being built, where the plans are missing several pages, the process has to stop. Sometimes it is about the heart or the kidneys or the lungs. Some miscarriages occur much later, with those organ-system “birth defects”.  And some babies do make it, which sometimes leaves them with a crippling problem, but alive.  Did you see the movie “Crips”?  It is great.

The general reticence to talk about miscarriages also applies to a lot of medical complications, and even cancer and other life-threatening illnesses.  Secrecy is just one of the ways people try to limit having to talk about the pain they are feeling.  The vulnerability can be excruciating. And some families feel that sharing vulnerability is a cardinal wrong–they think of other people as “outsiders”—  and say “it is none of their business”.  They do not expect others to be a source of loving support and compassion.

My husband was in severe pain about our miscarriages, but had no language to be able to talk about his pain.  And he believed in secrecy. It was excruciating.  

Until we had ultrasounds and genetic testing, most people’s questions about WHY were unanswerable.  Sometimes it is about the way the uterus is formed, but often it is about going into premature labor. Sometimes, in the early 20th century, uterine suspension was prescribed, which is using stitches to hold the uterus up, like a half-inflated balloon, instead of letting it fall over on itself, bent, which might put early pressure on the cervix to make it open too soon.  

In my case, I was 37 when I got married, and I had the first miscarriage at almost 39, and then Andy was born when I was 39.  Then I had 4 more early miscarriages, before the 10th week.  In each case, they had looked good on the first ultrasounds.  Doctors think there is more likelihood of miscarriages with advancing age in the mother, (due to older eggs) so that was what we thought mine were due to.  It is hard to have the courage to try again, but we so deeply wanted children, we had to try.  Sebastian was born when I was 41and a half.  I never was able to conceive again.

I was grateful for a program of healing at my church, which did a guided imagery and blessing.  The guided imagery was to go see these babies who had gone to heaven.  We can not tell before at least 12 weeks whether it is a boy or girl, because on ultrasound the genitalia are ambiguous until then.   So I don’t know about the genders of my lost babies, but I gave names to them all, and one is buried in the back yard at the grandparent’s house, because I was allowed to take “her” home.  I had this lovely time, with all of them having a picnic with me,  healthy, apple-cheeked, busy children, playing under a big oak tree, on a sunny day.  And then the priest asked us to give them back to God, in heaven, and let them know we will see them again there.  This was a very healing thing for me.  It is very hard to lose a wanted child, even this early in pregnancy.    

I felt that I was given this lesson 5 times  in order to really have compassion and understanding for the pain of my patients;  not just say “oh, its a miscarriage”.  There are women who are so traumatized they won’t try again, and some won’t ever even have sex again.  Some men also, back away from the kind of suffering it causes; the risk of those months that parents hung an ornament in the shape of a stork on the Christmas tree, symbolizing their hope.  Learning to talk about it really matters, and we can now help a lot more, give answers and sometimes real reassurance.  It is also important to let people know when we are in early pregnancy, because there is a risk the pregnancy is NOT in the uterus, but in one of the tubes, which is called an ectopic pregnancy, and it can kill a woman, because all the bleeding is hidden inside the belly, when it ruptures.  It is a surgical emergency.  

One of the miscarriages I had occurred when I was 3 hours away, visiting my sister.  I started hemorrhaging.  I packed myself into the car with a lot of towels between my legs and under me, and drove straight back to my own hospital, and got into the ER, spilling clots and spatters of my blood all over the place,  and begged/demanded for them to get the resident on call to do a curettage (cleaning out the uterus) because I was bleeding so much I knew I would need a transfusion if they didn’t hurry.  

The uterus cannot clamp down and stop bleeding until the embryo or fetus and the placenta are out.  Sometimes the placenta doesn’t separate cleanly from the wall, and the walls just keep bleeding profusely, until the uterus is empty and can close down.  Sometimes the muscle is too inflamed or infected to close down effectively and we need a lot of medicines to  help strengthen it, to stop the bleeding.  This is one of the reasons I have fought my whole life to get universal healthcare.  Women need to be able to get into the ER and have care for a miscarriage like this.  

This is the main job I did for a long time— to try to stop the uterus from bleeding, after a baby was born, or after a miscarriage.  In third-world countries this is the common highest risk reason for mothers to die.  

I have a deep attachment to the cup at Communion, that it is the blood of Christ.  There are times when all I could think about was blood.  It is good to connect to the life-saving potential of blood, and the soul-saving potential of Christ’s blood.  It is wonderful that the actual symbol is wine.  Wine which is love and blood.  Perhaps this image has helped me, to hold on to the faith that there is spiritual growth possible, even in these painful losses. There is nothing so wonderful as a baby, for bringing us hope for the future, and bringing the love both from us and to us, in a family. And it was my privilege to help many moms and dads make it safely through that process, to arrive at the joy of having a newborn baby in their arms!

We learned in college, especially with the theistic existentialists like Teilhard de Chardin SJ,  that the Creator/Creation works through DNA and evolution.  So everything is ALWAYS in process, never static, always becoming. The human being is never complete, and always we are growing on a continuum from before time to the “fullness” of time, with increasing complexity and consciousness as we go.   Time and space are tools that the Divine Mystery uses for the unfolding of creation.  We are unique but we are also connected, and the universe has patterns we can understand.  We are dependent, and independent and interdependent as human beings.  We can understand some things better because of cycles, seasons, rhythms which repeat over time.  
In the way a human embryo grows into a baby, ontogeny recapitulates phylogeny, which means that the developmental /ontological material of the DNA which is going to become a person, goes through the morphing of the “tree of life”, from a one-celled organism to the very complex organism of a full human person. This is what pregnancy IS. The embryo at one point has gills, and then they disappear, (they are called branchial tubes, and are gone by about the 3rd month). The embryo has a tail, and it disappears similarly.  All the physical attributes and organ systems that evolved through many phyla also evolve through human embryology.  We have hearts, lungs, livers and kidneys which are very similar to other organisms’ as life proliferated on our planet.  Things arise, cohere, coalesce in to the complex organs which are designated in the architectural plans of our DNA.   Our brains also mimic and then go beyond previous designs of brains in other mammals.  
One thing Teilhard said which I find very compelling is that we have to explain why things have gotten more complex and more conscious, when the laws of physics lead us to believe in a tendency toward entropy, that is LESS energy.  Why is the universe expanding, not slowing down but actually speeding up at the far reaches of the cosmos? Teilhard said it is because the energy of creation is LOVE.  Love is what makes that dynamic growth and surging forward progress possible.  Love underlies both differentiation and union, coming together in more complex ways.  There is something in us that longs for that fullness, that union which transcends self.  
So our lives are in constant progress, and there are many complex parts;  and yet we are each unique, and have a personal story, even as we are just one thread in the big tapestry.  And we can take a photograph or a series of photographs, which captures a moment or moments on that ribbon!