Safe behind a smartphone

Clowns Without Borders, Ebola

CNET (cnet.com) posted this piece I wrote about the changing landscape of clown shows by CWB and how smartphones, with clowns, are bringing us all together. Take a read! 

https://www.cnet.com/news/clowns-without-borders-sierra-leone-ebola/

 

Advertisements

From rubber gloves to rubber chickens

Clowns Without Borders, Ebola, Uncategorized

When I got in the Uber four days ago, my brand new red Converse were still untied. I was rushing as I often do. In the car, the radio played Toto’s “Africa.” You know, that  catchy tune from 1982 about a continent confused by many to be a country? (There are 54 countries in Africa). While Toto was busy blessing the rains down in Africa, my head was down as I tied my shoes and bit my tongue. Though that song sold millions of copies and its chorus gets stuck in your head for hours, its message is disturbing. It paints a general picture of suffering that highlights a common narrative about an immensely diverse continent. We are told that “Africans are poor, they are sick and they need to be saved.” When epidemics strike, like the recent Ebola epidemic that occurred from December 2013-March 2016 in West Africa (primarily Sierra Leone, Guinea and Liberia), the media condemns the whole continent. Headlines like “Ebola in Africa,” Famine in Africa,” “Malaria in Africa” are not untrue, but they are misleading, generalizing and most unfortunately, they are othering.

(Is that song still stuck in your head?)

“Othering” causes distancing; it allows us to unrelate from people, communities and those with differing points of view.  By separating ourselves from the “others”we become much less tuned into the world around us. “Othering” is easy though, it feels safe, it is a very human reaction. It is also dangerous.

Taking my mind off of Toto’s tune, I perserverated on what I had packed, afraid that I had forgotten something important. I thought about my clown gear, the people that had given me elements of it and those who had inspired me to take this trip. I had juggling clubs that Sam Lee gave me, rubber chickens from Sarah Foster, squeaker toys from B.B. Widdop, Jamie Lachman’s antique horn, George Lennox’s 1970’s ruffled tuxedo shirt, David Lichtenstein’s nose and a head full of clown routines I had learned from friends and mentors–Rudi, Moshe, Esther, Hilary, Pops and Peppe, to name a few. My clown character had become a compilation of gifts from extraordinary people. They all flashed through my head as that godforsaken song stopped. I was on my way to the airport, to fly to Sierra Leone, meet up with Eva and Malin, create a show and perform for street children and families affected by the Ebola epidemic.

This is my second time in Sierra Leone, the first was during that epidemic that took more than 11,000 lives and once again stigmatized a continent. Then, I was a nurse treating children with Ebola. Now I am a clown, treating no one, just playing. Then, the rule of law was ABC: Avoid Body Contact. Now, once again clinics, mosques, churches and markets are open, you are allowed to hold hands, hug, congregate and interact normally, like humans. Now the sounds of car horns overpower the then eerie drone of ambulances 24 hours a day. Now we can safely share a plate of “chop,” communal meals of fish, groundnut sauce and rice. Music, once again, is everywhere.

Eva, a musician and Malin, a clown and old friend of mine, both from Sweden, were invited with me to come and be ‘based’ at the Lotte Elf School in Portee. There we built our show and have been teaching music and clown workshops. It is from there that we travel to put on shows. Cars cannot drive to where we work without getting stuck or destroying their undercarriage because of the rocks, mud and holes. Our team carries our entire show with us in suitcases and backpacks. Usually we share the load, except for when we are in character and Malin’s clown, “Apple,” is tasked with schlepping all the gear while Eva and I warm up the audience with a song. Eva plays the quattro and I, my banjolele while Malin’s clown struggles with chaotic finesse to set up our stage.

For our first show, the stage was in a ruddy intersection, its backdrop, an electric blue passenger van with dilapidated windows and a yellow racing stripe. More than 100 people waited for us in the Sunday morning sun. As the show ensued the crowd doubled in size. Children in bright colored formal clothes and men in white tunics cheered us on while we introduced each character with eccentric dance moves in our oversized outfits. An elderly woman in a maroon and purple dress, a complex lappa design resembling lightening bolts and cracked ice with a pristine matching hat, stood in the front of the crowd singing with us as if she knew the words to all of our songs. A man in nothing but shorts came out of his home–perhaps he had just woken from a long Saturday night–he scrutinized our magic tricks and tried to explain them to other audience members. The crowd clapped and cheered, mesmerized by the duet played by Eva and I on the flute and musical saw and always ready to cheer on Malin as her clown, the “number three” character (think Groucho Marx), stole the show.

Early on in the show we play a routine in which we fight over who gets to read a newspaper. The fight builds in ridiculousness, tempo and intensity to the point at which the newspaper rips and we turn the now halved paper into a pair of binoculars. We look into the audience, like children having completely forgotten about our argument and we are immediately distracted by who we see in the crowd. We see a child and we go to shake his hand. Each clown wants to give the best handshake and so the three of us end up running circles in front of the child taking our turn to give the funniest, most formal or most ridiculous shake. We invite him on our stage then and do a routine in which, while holding his hands, we try to figure out how we can all bow together.

The child we picked in our first show was thrilled to be the center of attention. He grasped our hands laughing while Malin and I tried to figure out to make us all three face forward.  I’ve done this routine hundreds of times in at least 10 different countries; it gets similar laughs for its simple absurdity. But this time on this day it was particularly powerful. I realized that there in my red nose and black tuxedo that I could hold a hand with no fear of contagion. There was no risk that this child or anyone that I shook hands with would infect me with anything more than a sense of friendship. I still carry the trauma of holding the hands of the dead and dying in this country not long ago. Covered in latex gloves and Tyvek suits, we sat with countless people, each sick, each with a unique story and name, cut short. But then, with that child, I realized all of that was over. With a tear in my eye, I wondered what it was like when the ABC rule was lifted in Sierra Leone and the fear of contact dissipated.

DSC01320

Clowns learning how to bow

The show was a hit and much of the crowd followed us back to the school from where we started it all. At the entrance of the school three of us sweaty, dirty and happily exhausted said, “goodbye.” We rested for about two hours and then climbed to the roof of the building to host a music and clown workshop for about 50 children.

Eva took the lead on the workshop after I opened with a short warm-up call and response song called “Flea.” She taught a group of 55 fourth graders a song that she had written in Krio. It is a sweet tune that requires each child in the group to say their name. One at a time, a child speaks and then the whole group sings the chorus featuring that child’s name. We stood in a circle and each child’s name resonated through the group, survivors of Ebola, survivors of living in the streets, and survivors of the world’s indifference, these children, each child, had a unique chance to shine.

IMG_2360

The classroom where we ran our workshop at the top of the school

Our contribution is small, we would say “small small” in Krio. But what we can do and what we strive to do with Clowns Without Borders is to elevate the child, the individual child, to learn a part of her story and share it. As individuals we all desire, in one way or another, for our name to be sung in a song’s chorus. And too, that we are all a compilation of individual gifts and inspirations, that when our name is celebrated, we are actually celebrating a much larger whole.

DSC01493

A child turns me into an air pump to blow up a balloon

Our show ended as so many of our shows have, in which we invite a child to come on stage and dance with us. A young boy joined us and mimicked the pose of a circus side-show “strong man.” He flexed his muscles over and over again.  He then climbed to my shoulders and stood there, flexed one more time and cheered. He was the tallest and strongest person in town.

To learn more about this project and the work of Clowns Without Borders, look here and here.

Honoring Alice

Ebola

Remember the time when someone you love died and when you felt so lost you had no grounding upon which to stand?  Remember when someone, a stranger or friend, held you and in that moment you felt stable?  Remember when you, yourself, lay sick in a hospital bed and the nurse touched your arm to say, simply, “I’m here with you.”  Remember when, alone, feeling judged, even hated, for something you had done, a time when you were not welcome, when you were not accepted for what had gone in the past, for the color of your skin, for the religion to which you held dear, for being in the wrong place at the wrong time– and remember when someone advocated for you, when they said to the crowd, this person is fine, just as they are?

Now, let me tell you about Alice.

We met in the back of a crowded van in the Port Loko District of Sierra Leone.  She, a nurse, specializing in psychological care, the only psych nurse in the Port Loko District and one of a small handful of nurses with that focus in the whole country. She sat bitch.  I, too, as we were crammed in the back of the van, four people on a bench made for three.  We were sardines in a van of case workers, an imam, a preacher and a couple of other nurses en route to meet a rural community which had lost too many people to Ebola.  We were scheduled to support a discussion—Ebola sex ed.Alice’s cheeks glowed as she taught me what I could and could not say.  She was the only woman in the van and she was soon to take on all the females in the community while the men would meet with men to talk about the importance of condoms, how Ebola was spread and the limited thinking that we knew about the disease’s remnants in survivors.  At the time we were hearing rumors of women who were infected by a man who had been negative for Ebola for six weeks or more.  We thought that the disease still lived in the sperm even after the body was no longer—for a long time—symptomatic. In the back of the van she taught me about taboos.

“We don’t talk about sex. We’re not even supposed to have it,” Her laughter was a harmonic resonation of the pocked roads over which we tumbled. “We all know it happens–we’re all human.”

She had a daughter and a family who lived hours away from where she worked.  Alice was stationed by the regional government to care for Ebola patients at a distant treatment center.  Her roles were as dynamic as her wisdom.  In the mornings she visited patients, mostly children, who watched their parents or friends die the night before.  She was one of the care takers who did not inflict pain on the patients.  Though we all wore the same white or yellow coverall outfits and only our eyes were visible behind the layers of plastic, inhumane, anti-contagion gear, patients would see her from a distance and, if they could, run to her.  As nurse in the treatment center I would come in armed with needles, bags of fluids, syringes full of caustic antibiotics that we injected into any limited muscular space we could find on our patients.  But Alice was different.  She entered the treatment center armed with oranges and mangoes; soda and sweets.

Alice held the patients.  She distracted them while they received painful procedures. She asked them about their religious beliefs, what they thought about death and what they needed to do to try to survive.  She spoke Krio, Temne and Mende.

When I met Alice, she was wearing her other hat, that of teacher.  She taught me in the van how appropriately talk about sex.  She laughed with the other case workers about patients we had treated.  She joked about how we did not give enough condoms out to Ebola survivors when we sent them home.

“They just survived Ebola…come on…they will be very very busy when they get home!”

We also gave survivors cash money, food stores and a sim card.  She commented on patients who received all of these gifts and then asked for more.  “What were we?  A resort?”

She balanced gallows humor with joy and with education.  She balanced family with work, though at the end of that day she told me how dearly she missed seeing her daughter.  But she had a duty to her patients and to her country.

We met imams when we crawled, sea-legged from the van.  They had been waiting at a central home with a long front porch.  At the entrance of the home was a drum, worn with age and covered by a perfectly stretched skin the circumference of a small table.  An imam nodded towards it and a middle aged man struck it like the toll of a church bell.  Soon thirty people were standing around us on the porch; we were introduced to the crowd and Alice moved quietly behind the men.  With the support of the community following our endorsement by the imams we shifted the conversation to reproductive health.  Before it moved too far, Alice spoke up, “Now we must separate the group.”

Women sighed with relief, some giggled.  Old men bowed their heads.

All the men walked to one side of the house, women to the the other, and each group stood in a circle to talk.  From the men’s group I could not see the women’s group, but when our group finished its session early because of the lack of questions and silence from the men, I walked around the house and saw that Alice’s group had doubled in size.  The women spoke for a while longer while we kept our distance.  Alice’s group hugged her when she finished talking.

Caregiver, teacher and peacemaker.

After the sessions Alice and the group walked through the community to visit quarantined families.  She helped ensure that the families were receiving the food and attention they needed while spending 21 days or more roped inside of their homes, praying that they would not develop a fever.  Most families at that time were not receiving ample supplements, the broken supply chain did not do rural well.

Alice had been informed that I had developed a close connection with a young child, a nine-year old boy, who survived Ebola.  For the sake of privacy, I will call him, Issa.  We visited a couple of houses, all inhabitants happy to see Alice, all inhabitants asking us for food and supplies.  Alice and her colleague Musa, a nurse originally from Freetown, but who, prior to the outbreak had been raising his family near Philadelphia, pointed out a house to me down the road.  It, like many homes, had the red and white striped tape wrapped around it.  Behind the tape, far from the road, stood Issa.

Although he had survived, he had family members who had been exposed to Ebola and had not yet cleared the 21-day quarantine mark, so his home was still anathema to the community.  Because he had survived, he was theoretically immune to Ebola.  Therefore, he was able to return to his mother and aunts.  Issa saw Musa and I.  He began to cry.  For as many times I tried to give Issa food while he was sick, I also injected him with drugs and held him down while we placed IV’s.  I sat with Issa while his sister died next to him.  I was a harbinger of suffering.

Alice chuckled as she intervened compassionately.

“Issa! Come here.  You have nothing to be afraid of.  They are not here to bring you back to the treatment center.”

She found it amusing that he was so afraid of us.

“Come here.  They will not hurt you; they want to greet you.”

Issa walked over towards us.  We asked how he was and he said he was happy to be home.  We apologized for scaring him and he quickly brushed it off.  He then put his hand out and asked us for an egg. Many children suffered from hypoproteinemia and because we did not have IV albumin (intravenous protein supplementation) we had only hard boiled eggs to provide.  Alice included in her arsenal of treatment center goodies, eggs.  And Issa devoured them, it seemed at times like the egg interventions were the only things we could give him in the treatment center that would elicit a smile.

Alice provided a psychological bedrock at our treatment center.  When she witnessed a patient who was not receiving what she needed, Alice would doff her protective gear and come to the treatment teams telling us how we could improve our care.  Patients confided in her; they told her routes of transmission, how they thought they became infected.  She communicated that with the teams and we were able to reach out to communities where there were heightened concerns for an increased incidence of the disease.  Patients trusted her. Her Alice-ness was ease.

The treatment center was de-commissioned in mid-2015 and soon thereafter Alice was able to return to her daughter and husband.  She continued her work providing psychological and compassionate care to people in Sierra Leone.  The emotional scars of this disease will endure for years, long after the detection of the last case.

Alice became pregnant with her second child and in May of 2016 she underwent a C-section delivery.  The surgery did not go as planned and though Alice’s child, who is perfectly healthy, survived, Alice succumbed to the surgical complications.  She escorted her youngest into this world as she departed.

In 2015, the world lost an estimated 830 women every day because of birth-related complications.  Of those only 5 came from “developed” countries; 550 deaths—per day—were estimated to have taken place in sub-Saharan Africa[1].

What do we have in the resource wealthy world that causes us to account for only 0.6% of daily maternal mortality and what do we have to share?  The answer is complex.  The solutions are obsolete, yet attainable.  They have to be.  It is not right that women, like Alice, who have brought life into the world, saved lives and livelihoods, who have brought council and peace to inordinate numbers of people and families, should die during childbirth

Resources exist in the both the resource wealthy and resource poor worlds, just as knowledge and experience permeates all cultures in all countries.  We have an increasing capacity to share what we have learned in the sciences and we have ever increasing mobility to share our words, knowledge, resources and ultimately compassion with technology.  The heartbreak that I feel when I consider the the loss of Alice’s life is another reminder of the urgency to acknowledge the abyss dividing the resource rich and the resource poor, to talk about it, to use what skills we have to invigorate new thought and new action.  No mother should die from a routine cesarean section in 2016 anywhere on this planet.

*          *          *

If you are so inclined, my colleague Edward Vandi has created a GoFundMe page for Alice’s surviving children and family.  If you care to donate, you may do so here

 

[1] World Health Organization (2015).  Global Health Observatory Data. Retrieved on 21 August, 2016 from:  http://www.who.int/gho/maternal_health/mortality/maternal_mortality_text/en/

A Case for Clowns: Ebola

Clowns Without Borders, Ebola, Uncategorized

Why Clowns Without Borders Works

Tortell pirouettes quickly and the microphone swings around behind him; it has a life of its own.  The centrifugal force of the windscreen pulls the instrument around his arms and legs, making his clown blazer flop poetic in the wind.  The crowd’s eyes are wide with surprise when he catches the mic just before it hits him in the face—Tortell’s eyes matching the eyes of the 100 children and families in the audience.  His relief, their laughter.

He has just spent the first 10 minutes of the show warming up the audience, a master street artist who draws the crowd in as he sets the stage.  It is more than 100 degrees Fahrenheit, pushing 105 even.  The audience and clowns from Spain stand in the shadow of a two-story colonial building with stone archways and wooden doors. Its tile portico is cool to the bare feet of some of the audience, the West African designs deflect the heat of the pounding sun.  It is about three in the afternoon, Tortell and his clowns have already performed two shows in Freetown and now they are presenting their final show of the day before heading further east.

This is the first day of Clowns Without Borders shows in Sierra Leone since the Ebola epidemic began in late 2013.  It is now early 2015, February.  This is also the first Clowns Without Borders show that I have ever seen as an audience member. This is the first time I’ve seen healthy children and families play, dance and be together since I had arrived in Sierra Leone eight weeks prior.

Once Tortell regained control of his rogue microphone he announced the opening of the show—acrobats and movement artists entreated the audience to a spectacle that consisted of partner juggling while standing on the ground and on shoulders.  The performers danced with fantastic and impossible objects—a giant fabric butterfly and streamers. All the while Tortell interjected the finessed scenes with mischievous intrigue, he tried (and always failed) to recreate what the movement artists had just performed, he filled the space with magic tricks winning over the audience with his glorious, comedic bungles.

I stuck out as an audience member, the only white person in the crowd. And though I tried to stand back from the front row, away from children and among the adults, parents turned to me and asked me when I would go and join the clowns.

“I’m not in the show.”

“Yes, but you must be.” An audience member grabbed my arm and pulled me toward the stage.

I froze, not playfully, but with a sense of deep, reactionary discomfort.

“No no, I am not in the show.  They are my friends there, I know them, but I am not in the show.”

I had not been touched for almost nine weeks, by a stranger, that is.  We were not supposed to.

The government of Sierra Leone had set a national edict—ABC: Avoid Body Contact.  When the woman from the audience touched my arm and I felt a surge of adrenaline, then fear.  It was fight or flight.  I was breaking the rules; they had been broken on me.  I felt like, for a fleeting moment, a victim.  Had I been contaminated?

The woman then laughed out loud, seeing my awkward reaction to her touch “OK, but I think you are a clown too! Look at them, they are so amazing!”

Another man near us noticed our commotion and he then held my hand as he explained to me why Tortell’s magic plastic bag bit was so funny.  He described in detail how he thought the magic trick was happening, and having done the gag before myself, I can say that he was mostly correct.

“But look at the children!  Look at them! They love this so much!” Another man chimed in.

Around us, scrambling to the top of adults’ shoulders were kids who clambered to get closer to the clowns.  Their laughter was silenced to a vibrant, low chatter only when the clowns presented movement pieces of silks flying through the air and then then thunder released again when Tortell entered and tripped over a brick on the rough strewn road.  Like waves of the ocean, their laughter came and went.  Laughter like this, according to the host who welcomed the clowns from a small German NGO, had not been heard for some time.

I came to Sierra Leone, like hundreds of others, to work as a nurse. From 2013-2016 the Ebola epidemic, first in Guinea, then Liberia and Sierra Leone took the lives of more than 11,000 people.  Children (under the age of five) who were infected had a 20% chance of survival when the disease prevalence was near its peak.  As a pediatric nurse, I still find it hard to describe the heartbreak of losing eight out of every ten pediatric patients we treated with Ebola.  The rate of survival for older children increased with their age, as did fear; as did depression; and as did withdrawal from play and community.

The unfathomable psychological destruction of the Ebola crisis reared its ugly head every day to those of us who worked in the “hot zone,” constantly desperate for supplies, more human power and for a cure. Children who survived the disease appeared frightened to leave our treatment units and return home—we learned very quickly that community members were often not welcomed home after surviving Ebola because of stigma born of fear and misunderstanding the nature of the contagion.  People separated themselves from others, people were afraid to interact like before, people were judged and communities fractured.  Children no longer played.

Towards the end of the clown show, one of the acrobats found a red, triangular flag and showed it to the audience, which had doubled in size and by now had formed a complete circle around the artists.  The clown waved the flag proudly in the air.  Tortell snatched it, then invited an audience member to come to the stage.  A grown man stepped forward much to the pleasure of the audience.  The clowns made the red flag disappear, then appear again from places like the man’s ear or from inside of his shirt.  Then a clown made the cloth disappear and reached into Tortell’s waistband to retrieve it.  Instead of the cloth coming forth, a long strip of plastic, red and white caution tape, like that used at the site of a crime scene appeared as the clown ran from Tortell revealing its full length.  The tape had red and white vertical stripes—the same tape used throughout Sierra Leone to quarantine homes with people suspected of having Ebola.  The clowns ran around the audience member with the tape and they all became entangled in a picturesque finale for that bit.  The audience, especially the man they volunteered were beside themselves with laughter.  A man near me, who still did not believe that I was not in the show held my arm and leaned against me for a better view.  For a moment, we were all limitless in our laughter.

I looked through the audience and for the first time since I had arrived in Sierra Leone, there was not a face that showed fear.  People were not stymied to stand with each other and accompany each other in playfulness.  Everyone was together.  Everyone looked normal.

War, poverty and disease trigger the worst of humanity.  They create a “new normal” of suffering, stigma and division.  What the clowns did on this excruciatingly hot day was provide a platform whereby normalcy reigned again.  The laughter broke the hold of stigma—even if it was just for a moment—and through the ridiculousness of the clowns, people saw each other not through the lens of disease but through that of a common humanity.

Read more about this amazing organization, Clowns Without Borders. If you like what you read and want to Support Us, feel free!

 

 

 

 

 

 

Declaration: What I learned from a millionaire mother, a NICU baby and a 3-year-old with Ebola

Ebola, Narrative Medicine

The corner of the washcloth still had its factory edge, bound and machine stitched.  It was one of a kind in a place where we made one-time-use “washcloths” by ripping squares of discarded fabric.  One use and often one wipe.  Based on how thread-worn and soiled the fabric was, we determined if we could risk a second wipe before throwing it onto the piles of vomit, blood and stool on the floor.

This washcloth was unique, however. It must have come from some box of donations from another place, a church group or wealthy family wanting to support the response.

The salmon pink corner matched the Salimatu’s* lateral commissure, her lips far more pale than the bleached rag.  Both used to be pink.  I had soaked it in water, not purified water, but water that ran inconsistently from the tap out front.  I wrung it dry a few times to make sure there was no bleach left.  I could not discern by smell alone whether any of the toxic liquid bonded with the cloths warps and wefts.  Everything smelled like bleach until all scent merged into nothing but hot air from the breath behind our N-95 masks.  Our olfactory nerves saturated within minutes of entering the Ebola Treatment Unit (ETU); after our sense of smell was gone, the only reminder that bleach pervaded the air was the collective chronic cough that most healthcare providers in the ETU developed.  Then only our hands and eyes could smell the death, the suffering and the pervasive, disturbing hopelessness.

Salimatu, for all intents and purposes, was dead.  She had died, or should have died two days prior.  She should have died from Ebola, but somehow this three-year-old, whose chances of survival were two out of ten, cleared detectable virus from her bloodstream. Sadly, the day after her seronegative blood was drawn, she suffered status epilepticus—intractable seizures.  For hours she convulsed intermittently and though we administered dose after dose of diazepam, it seemed that we could not quell the neurological storm.  Eventually she stopped seizing and ironically it was not death that quelled her neurological storm. She breathed and had a heartbeat, but she did not move.

She laid there for 24 hours on a plastic wrapped mattress upon a cracked concrete floor.  Her lungs were haunted with the sound of a rattle, an ominous sound, as if the ghost of a child who died in infancy was tantalizing now insomniac parents trying to sleep in the room next to a prematurely empty nursery.  She had inhaled vomit while seizing, aspiration pneumonia was taking its course.  That too should have killed her.

At the end of the morning shift, 90 minutes in the ETU, and two days after her seizures commenced, my facemask was fogged and muscles twitched from hypoglycemia.  There were no more IVs to start or medications to give on the pediatric team and so, in my last few minutes before doffing my protective gear, I kneeled next to Salimatu to clean her.  Her pale skin had a pristine glow.  The compassion this girl’s body received when we all expected her to die, the way staff members, all staff members—nurses, physicians, nutritionists, sprayers, cleaners and even members of the corpse team—cared for her by anointing her in Vaseline, rolling her body to prevent bed sores from forming, preparing her for when she stopped breathing, was some of the highest level of care I’ve ever witnessed. Her eyes remained closed without the hint of stress, her respirations, though with a cantankerous rattle, were consistent and slow.

I cleaned her hands with the water sopped cloth. Right hand, left hand, legs and feet.  I checked her diaper, which was dry and clean and I thought of the children that had gone on before Salimatu, who stopped urinating because of dehydration days before they died.  There was no tone in her muscles. She looked like a child’s toy wearing hand-me-down clothing.  I washed her face last.  Forehead, then ears, eyes, nose, inanimate in perfection.  Then her dry lips.  The corner of the washcloth draped the edge of her mouth.

Her lip twinged.

As if it were a hand, the corner of her mouth reached out to the transient angle of the washcloth sweeping gracefully across her face.  I thought I was hallucinating, so I wiped her face again to confirm.  Again, the vermillion border of her bottom lip contracted when the cool cloth touched down, this time with vigor.  This time she caught it.

Salimatu began to suck on the washcloth, declaring that she was not yet ready to die.  I soaked it with water time and time again.

Across the Atlantic Ocean in some Neonatal Intensive Care Unit (NICU) a new father washed his hands twice, a long meditation on soap and water.  He then, under the direction of his nurse, slid his naked fingers through a plastic portal to touch his child for the first time.   His daughter was born when she was 23 weeks and six days old according to a recent episode on the show, Radiolab.    His wife went into labor at 20 weeks and after nearly hemorrhaging to death, with the help of world class medical care she was able to keep the baby in her fragile womb for almost four more weeks.  When she was born, the child had a heart and lungs that pulsated rhythmically, appropriate and fast.

The child hardly moved there in the plastic box from the time of her birth.   Tubes supporting her breath, nutrition and hydration collectively carried more mass than this living creature.  A symphony of alarms, undulating respirators and monk-like parents leaning uncomfortably over individual isolation units filled his exhausted mind. I imagine him visualizing himself in The Matrix, when Keanu Reeves “wakes up” to rows upon rows of incubated humans being kept alive and afloat in pods of translucent fluid.

The nurse instructed the man how he could touch his child.

You cannot rub the child or her skin will come off. 

His heart raced, afraid of the new life before him and afraid of the new life in front of him, his wife and two grown sons. The pulse in his finger must have felt like it marched at the rate of his daughter’s heart, which in reality, would have been incompatible with life for him, necessary for her.

According to the podcast, she wrapped her fingers around the tip of his when he first touched her–the palmar surface of her premature extremity concave around the ridges of his fingerprint. His genes and hers—fear dissipated.  This soon-to-be million-dollar child declared that she was not going to die.

The Moro reflex, or infant grasp, is thought to originate somewhere between the lower pons and medulla.  Essential members of the brainstem, the pons Varolii and medulla oblongata relay messages of tactile stimulation to higher level processing centers of the brain, they maintain balance, breathing and swallowing.  An infants grasp is as autonomic as is the smile that arises when a baby farts—and yet, we, as humans find meaning in gestures that science has defined to be simply mammalian.  Grasping and sucking show us, in the newborn or neurologically devastated that there is some primal function of a developing or damaged brain.  This is the brain’s declaration of viability.

I work in a hospital in a wealthy neighborhood of one of the world’s wealthiest cities.  Every day at work, I encounter people who are afraid, angry, bitter and suffering.  When I met Salimatu while working with Ebola patients in West Africa, I also encountered people who were afraid, angry, bitter and suffering.  Though I have never met the NICU baby, Juniper, from Radiolab, I can say when I spent time in a NICU as a nursing student, we frequently met parents who were suffering.  In some intangible ways, this suffering is all the same.

My current employer offers extraordinary VIP services.  Celebrities, billionaires, donors, family of donors, friends of donors, friends of friends of donors come to us and somehow, after a chain of phone calls, rooms that were not available in an overcrowded emergency department or on a floor where other patients have been waiting hours for a bed, open.  The hospital I work for is a public hospital, thus it receives funding from the government to support the training of medical residents and to treat all patients that enter our facilities.  It does this and ever so disproportionately.  The rich receive consistent and world-class care.  The connected know a 5-Star reality that few others experience.  The community around the hospital knows this and has grown to accept this glaring incongruity.

As an emergency nurse, we greet all of our patients at the door and rapidly assess them determining: sick or not sick.  A woman came to us one day with a child who had had a fever the day before, had normal vital signs, was eating food and playing—not sick.  The family had always received “boutique-grade” medical care because of who they were, who they knew and the family into which they had been born. So she expected nonetheless.  Our department was not yet full, as it was early in the day and though the child did not need it (per isolation standards), we were able to give them a room in which to wait and be assessed by a physician.  I told the mother, however, that if we had a sick child arrive that needed a monitor, I might be forced to move them out of the room into a hallway space.  She ignored the comment as if I had not spoken or was not even in the room.

I need to see a doctor.

I reassured her that she would.

The day progressed and our department faced its routine inundation of more patients than bed space, a child arrived with a known neurological disorder, a shunt placed in his brain to drain fluids and the rapid onset of symptoms suggesting the possibility of a shunt malfunction.  This history and presentation of symptoms is alarming, marks the child as sick and usually is a one-way ticket to the pediatric intensive care unit.  A PICU patient medically and ethically, by all standards, merits a room with a monitor.  The only room with a monitor that was available in that moment was the room the non-sick child occupied.

For legal reasons and the sake of personal dignity, I could not explain details to the mother of the non-sick child why we would need to remove them from the room.  I did say something like:  We have a child in triage who will need a monitor for his care and because we are limited by space and your child does not need to be actively monitored, we ask that you move to this clean bed in the hallway.

And she retorted; she transformed into a lioness.  Her pale face reddened and sweat rapidly beaded at the dark roots of her blonde hair.  She stood within an inch of me the same way that bullies would get up in my face when I was a middle school student.  She did not shove me or punch me like they did, but she shook the same way and both hands clenched.

You… will… NOT…. move us. We are here to be seen by a doctor and we will not move.  YOU will make my child sick by putting him in the hall and he… will… not … get …. sick… because of your neglect.

We spoke more, she did not budge.  I calmly informed her that we did not purposefully put any patients at risk and that her child would be safe in the hallway.

At some point in all of our lives, we made a declaration to continue.  Unknowingly sometimes or reflexively even, we made a gesture that said, I am here in this moment and I am here to stay.  Our declarations of life, of love, of commitment to something unknown and greater than ourselves makes no logical sense.  Sucking a washcloth or squeezing a finger are extremely simple declarations that tell scientists, nurses and physicians that a child will survive despite all statistical odds, despite the science upon which we, as professionals rely.  This declaration invites hope along with suffering and pain.  It welcomes expense of money and energy, yet we have all made it and some of us have witnessed it declared by others. It is a violent declaration at times too but it comes from the same humanity.

The mother, like Salimatu, like Juniper made a declaration. One that sprung from a deeply rooted, evolutionary and cultural place.  Perceived survival first—reflexive and uncompromising.

And though I struggle with the abyss between the rich and poor in this country, the injustice that weakens the poor and caters to those made fragile by wealth and financial power, there is an innate beauty when we simply think we are trying to survive.  It is that beauty, based out of the core of our brains that makes our skin crawl and brows sweat, that makes the child dying of Ebola beg for formula to drink, that makes the neonate continue to breathe against all odds that makes us wholly, and collectively human.  As we all declare our place in this world, we too, all suffer.  And this mother who nearly throttled me, who I would like to thank some day for her ferocity if ever I meet her again, will never understand Salimatu’s struggle.  Salimatu, likewise, will never know hers.

Salimatu survived Ebola against the backdrop of seizures, pneumonia, malnutrition, profound poverty and social stigma.   Juniper spent more than six months in a NICU and lives, healthfully, today.  The mother who belittled me and my profession was able to stay in the room with her child; they were discharged to home after our physician deemed her son healthy.  We did give him some liquid ibuprofen to drink, half of which he regurgitated on himself and the floor.

From a neatly folded stack of hand-towels I found a cloth him with a cloth and wiped his face clean.  One wipe and then I dropped it into a blue plastic bag upon a pile of other soiled, bleached white towels.

 

*Salimatu is a pseudonym for 3-year-old patient who survived Ebola in respect her and her family’s privacy.

 

The Academy Awards and Trauma Porn

Ebola

She died facing eastward. A bleach stained traditional cloth called a lappa wrapped around her waist.  She was topless in the one-hundred-degree heat and her body temperature, before it began to cool, was 104. Algor mortis would not have changed her temperature much.  When we touched her she was still hot.  She had been septic, encephalopathic, disoriented and, based on the hand-off of care report we got from the two physicians who had seen her twenty minutes ago, was unable to walk.

She bowed prostrate.  Her arms and torso symmetrical in child’s pose.  She died praying.  The cool concrete floor and her faith were her two interregna from Ebola.

Susie and I found her. We entered the red zone with our normal supplies plus two doses of diazepam. 10mg per syringe, both dedicated to the woman I will call Isatu.   We had planned to administer the medications to ease her anxiety, respiratory effort and, we hoped, ultimately, her suffering.  Our pharmacy of only nine medications to treat every medical condition we saw, including Ebola, bound our interventions to a select few.

Stillness radiated from Isatu’s body. She was a narrative of contemplation, humility, gentle and ephemeral pride.  Across the ward from her another patient lay dying. The calm of the room  cooled the jagged respirations of the woman who lay on a cholera bed living out what were to be her last 12 hours. The descending afternoon light pushed through the cracks between wooden window frames and the concrete blocks that precariously held these false barriers.  There was no Harmattan wind that day and the sliver of sky that we could see was clear.

There was no tell-tale puddle of stool or vomitus, no sign of struggle.  Isatu’s hands were not reaching upwards, contracted as if grasping for a last vision.  Her mouth was not open, nor were her eyes wide like so many of her community members who had proceeded her in death.  She was so perfectly holy in that moment; Susie and I paused and watched her.  Was she breathing?

*   *   *

On February 28th millions will watch the film industry’s pinnacle event.  New celebrity will be established, old celebrity reinforced, a lifetime of achievement will be honored as will shallow debate of what was worn and what words were blundered. We will argue, more importantly, about racism in the industry.  And I am hopeful (albeit skeptical) that there will be additional discussion that challenges the role of the resource-wealthy world in our documentation of the poor and suffering.

Body Team 12 is a horrific, short-documentary.

I want no one to watch it; I think that everyone needs to see it.

Last year I sat in the Innovation Hanger at the San Francisco Palace of Fine Arts surrounded by many influential and contemporary minds of global health, medicine, the military and humanitarian response agencies.  We were invited by Paul G. Allen Family Foundation to talk about innovation and Ebola.  Allen, the film’s executive producer featured Body Team 12 as a part of the opening remarks.

For industry standards, the film is well done.  For conference standards, the meeting was enlightening and likely profitable for a few.

While everyone had some loose connection to the crisis, some of us at the meeting actually worked in the Ebola response too.  There were many people, with many ideas –voices shouting to be heard” to borrow a phrase from William Alexander Percy that were powerful and yet completely disconnected from the realities of Ebola.

All voices, however, were silenced for a few minutes by the shrill howl of loss, the primal cry of mothers wailing for their dead children, harmonizing with the muted rumble of fathers overcome by sorrow—the opening sounds in Body Team 12.  I turned away from the screen that repeated images of black and white body bags stacked in the back of trucks.

I scanned the rest of the room.  The audience was transfixed, enraptured in the violence before them.  Mostly white faces reflecting the rapid fire flash of dolor.  I scanned the biographies of speakers—there were hardly any representatives from West Africa in the audience. Here, in this room, sitting shoulder to shoulder with leaders in the tech world, with masterminds of the humanitarian response machine, we were spectators absorbing the distant suffering. And even though we had access to the yet-to-be-Oscar-nominated film, the crisis remained thousands of miles away, it remained a crisis of the “others” we watched die in the media.

Juxtaposed with the eloquent and impassioned words of the short documentary’s heroine, nurse Garmai Sumo, are callous images of Liberians in agony’s throws.  They wail watching loved one’s bodies get wrapped in thick plastic bags.   Close ups of women and children convulsing in tears, shocked faces and men fighting on the streets bookend a parade of healthcare workers, in coverall suits, rubber gloves and goggles who bring out the dead to be burned or buried.  The film is grotesque.  The film inspires horror.  The film is important.

I wonder if the mother saturated by tears gave the filmmakers permission to show her, up close, in what could have been her weakest moment?  I wonder if the young boys in the crowd witnessing yet another dead body collected by these plastic ghosts, their faces catatonic would be proud to be seen by the rich world in this way.

What if that woman was my mother and the child my son? What is it to be immortalized in a short film that may bring its producers, director and crew the highest American film honor?

I would be a hypocrite to omit the fact that I too have benefitted in some ways from the Ebola crisis.  Those of us who work in humanitarian aid, emergency response, development have jobs and opportunities because suffering exists.  But to what extent do we reap the benefits?  If this documentary wins an academy award, if its filmmakers have an opportunity to give the acceptance speech, who will receive the credit?  What is more, what benefits will nurse Garmai Sumo inherit?  How about the families of the dead or the communities where the film crew collected the footage?

*   *   *

Susie and I kept our distance from Isatu.

Once we yelled, “Corpse Team” a group of young men and women would don their protective gear and enter Isatu’s room with a white body bag and gallons of bleach.  They would saturate her body, repeatedly, with the toxic chemical so much that her lappa would look like a second layer of skin.  They would roll her corpse, then zip her in in a body bag before carrying her to a make-shift morgue.  That room was made of two-by-fours walled with white plastic sheeting.  It was a translucent place when the sun was at its fullest.  The white body bags would glow in the light until the pick-up truck, just like the one in Body Team 12, would arrive to escort Isatu to the community graveyard, laid upon a pile of “others.”

*   *   *

All of us who witnessed the massacre of Ebola in the nations of West Africa have memories in extremis; many of us want to share those stories.  Body Team 12 tells a jarring story, a real story with, of course shrewd editing to manipulate the eye and entrance the viewer. What is our role as artists, activists, writers and storytellers working in a post-colonial world where a few have access to the suffering of many?  How can and should we tell those stories that we may cause no harm and that our profits, first and foremost, provide benefit to those who lost everything?

As a nurse I profited from knowledge gained having witnessed first hand the failures of the Ebola response and I also profited from witnessing resilience, compassion and unconditional love. Students and scholars profited by applying new technological ideas to this crisis, though many innovations did not reach the people for whom they were intended.  Countless NGOs profited from grants and media air-time.  New careers were established; new channels of funding were born.  And now perhaps an Academy Award will be added to the list.

Whose voices are the loudest among all of those “shouting to be heard?”  I fear that the those most desperate to be compassionately and honestly heard are lost among the yowls of the privileged.

The international Committee of the Red Cross and Red Crescent created a 10-point Code of Conduct  establishing ideal standards of behavior for humanitarian work.  Point number 10 states: “In our information, publicity and advertising activities, we shall recognize disaster victims as dignified humans, not hopeless objects.”

*    *    *

Isatu died a horrific death and yet she faced it with dignity and immeasurable strength.  She was not longer supposed to be able to walk, she was thought to be obtunded and she should have been based on the pathophysiological progression of the virus. She, we thought, had no more cognitive reality.  But Isatu, alone, pulled herself out of bed and faced east.  One last prayer to close a shortened, but immaculately profound life.

 

The Last Day: Facing Death with Dignity

Ebola

The gravel absorbed most of the fluids except for when we had a rainstorm or when they re-plumbed the water pipes and converted them to run bleach.  The fog in our masks allowed us to discriminate between wet and dry, we could see matter, chunks, knowing the liquid was most likely vomit.  The diarrhea was usually watery, rarely just a loose stool, so most “dark water” was presumed blood or feces.  To track patients, you could follow wet footprints, imprints on the cool cement.

She looked up at us like a tourist sitting on a bench in a park yearning for the glance of a stranger she could entice to come over and ask for directions.  There was a smile on her face that, from a distance, looked as if she was enjoying her time sitting on the stoop by the unit in the sun.  It was warm, one-hundred degrees outside, most likely one-twenty in our full-body protective gear.  She looked towards us, then at the sun again.  Her squints at the sun betrayed winces of pain, her smile was a reaction to the cramps in her abdomen.

It was not until she reached both of her emaciated arms up to us, fingers carelessly curled as if too weak to reach full extension, that we saw she was sitting in a pool of her excrement.  Her legs were soaked, her lappa cooled with urine and stool.

She stood with our assistance, Kim under one arm and me the other.  Susie guided her hips up.  Kim asked her if she wanted to go inside and she affirmed with a wary nod.  Her eyes were nearly closed when she turned her face away from the sun and towards the ground to watch each step she was about to make.

Elderly at 32 years old.  Breasts flat against her ribs, skin that was plump days earlier hung at her waist.  There was no more muscle in her arms and her legs supported her weight, the only support she had left.  Her eyes focused beyond each step, focused on another goal, but she took each one intentionally and fully, beyond a goal of not falling, she moved to move along with us.

Despite her frailty, she gripped our hands with grace and balance–more grace than balance.  Perhaps we were dancing as we supported her body weight in the twenty paces it took to bring her back to her mat on the floor. The dance was clumsy with death as our lead.  We moved together and no one fell.  She, then death, then us.

And at the moment when I thought we had put death in third place, she froze, a rigor mortis set into her living legs and she gasped what air was before her.  Her breath was light and high-pitched, a whimper, nearly sexual but far from pleasurable.  And her knees unlocked; she quaked in our arms.  Her head dropped and she looked to the concrete below.  Her bare feet wide on the floor, and then the splatter of water, stool, clear feces and mucus fell.

She did not move her feet, or any part of her body for that matter as a liter of fluid soaked the porous stone below.  We saw the strength that relied on her toes, supporting her 80 pounds of weight.  And the roots by which she held strong calmed the rest of her shaking body.   Like leaves in the wind, her fingers wound themselves around our hands as she looked to us on each flank.  The spiraling fingers stopped firmly like her feet, and she was ready to move again.

Five more steps.  Every muscle in her lower body pulled her forward; she owned each step, each one was precious. Again she paused.  The filth that her body was letting fall, her sloughing digestive track, pouring from her was to be left on the floor, none for her bed.

I removed her lappa.  Her bare body, now shook from a new fever, or hypovolemic shock. Her body was a straight line that drooped in all aspects but her eyes.  Her shoulders too maintained a heroic tension that pushed against my triple layered surgical gloves.  Kim and Susie found rags and cleaned her again.  I stood behind her and held her under her shoulders.  She looked over her left shoulder and I retreated more from her sightlines.  To be eye to eye with her while she stood there naked, this young mother whose job it was to clean dirty children, sustain her family, provide all for her community, did not feel right.  I hid behind her.

She looked the other way, swatting her right arm as if to shake me off or gesture me closer.  I hid again, as if I could not be seen, a child playing peek-a-boo. And then the fresh lappa came into my foggy field of vision.

I could see only what was directly in front of me.  Peripheral vision would have been a luxury at that point.  Sounds amplify when vision fades, the moans of patients behind us and laughter of a child outside.  Our protective suits, in a constant state of rustle, produced a hollow, cavernous sound with every movement.  At this point in the Ebola treatment unit (ETU), after more than an hour, one could cool himself by shifting his arm or leg in a manner that allowed a new piece of personal protective equipment (PPE) to touch the skin.  Sweat from other parts of the body, that had attached to the interior of the suit and slid downwards, outwards towards the extremities, would briefly touch a piece of skin and bestow coolness.   I leaned my head forward, slowly like an inebriated chicken plucking for a foggy vision of a seed.  My hope was to feel fresh sweat that had migrated from my head kiss the back of my neck.

“Tim.  Tim, take it.”

Susie snapped me out of my trance.  She shook a fresh lappa in front of me.  I imaged the cool air that shaking a lappa would produce if we were not enveloped in this gear, how soothing it would feel to us, how soothing it should feel to our patient, standing naked before us, now clean, and with a fever of 41 degrees Centigrade.  105.8 degrees Fahrenheit on her forehead, 100 degrees outside, 120 degrees in our suits.

“Here, take it.”

Her muffled voice from behind the n-95 mask, just louder than the moving suits, sounded angry, exhausted.

I wrapped the lappa around this woman’s waist.  While tying it about here, I leaned my shoulder into backlight enough to let her know she could lean into me but not so firm that she toppled over.

Kim was now at her shoulders and Susie prepared her bed.  Kim shifted towards her right shoulder and I tied a knot in the lappa at her left hip. A bony ledge met my knuckles and though she had nothing left, she stood proudly looking down at me covering her waist.  Once she was tied I stood in front of her, Kim and Susie, no longer in physical contact, looked at her bed now dressed with one lappa and a folded sheet, a makeshift pillow.

While we cleaned and dressed her, her eyes maintained a royal gaze.  We preened her, maidservants attending to her every whim, which now, we think was simply to die easily.  The paradox of grace, rooted acceptance, boldly facing the fear of an untimely and painful death poured from her heart.  And above all else, dignity prevailed.  This regal woman had howled days prior, a witness to the deaths of eight year olds who began to seize in the middle of the night alone, the caretaker for infants whose mothers died after their breasts became flat and dry of nutrition, the bearer of bad news, who would meet the teams as they entered the ETU daily alerting us to who had died the night before.  And now she stood here peaceful and valiant.

Violently impermanent, this moment shifted and fear returned.  Her eyes grew as if her soul was pushing forward to exit, finally, from her eye sockets.  Wide-eyed she gasped and fell forward.

I stood, just below her, rising from securing her lappa.  Her eyes glowed beyond me but then met my gaze as I helped catch her fall. As she looked though my translucent face shield, her arms, full of force, extended and found themselves behind me. Susie and Kim found purchase in her shoulders and I leaned forward hands open, and palms upwards landing on her scapulae.  There was no more falling and we once again supported her weight. She looked over my right shoulder now; Kim and Susie relaxed.  We were ready to lay her down.

Someone said, “OK,” no one remembers whom.  But we all moved in unison towards the bed; the patient did not follow.  She leaned against me, into me.  She counterbalanced my gesture and when I moved back to try again, she pulled me into her body as if falling, but completely in control.  After I caught her again, I realized she did not want to be caught.  The gesture she proposed had been foreign to me since our arrival in Sierra Leone six weeks prior.  She hugged me.

Our “no touch” policies and chants from children in the neighborhood “ABC—avoid body contact” were taken seriously by our staff.  No handshakes, no hugs.

She hugged me, she grasped me, she completely controlled my movements.  There was a strength present that did not make sense.  She was out of her mind, we thought.  We were wrong.  She pulled me to against her body, her palms opened across my middle back.

She was beautiful.

Her head rested on my right shoulder and into the cavern of my neck.  With arms gripping me like twin snapping turtles, soft hands caressing my back and her head gently resting on me, she sighed.

The oil and water of intimacy and fear in this moment could not have been more chaotic.  I felt a warmth within my body that I had not felt for some time. This heat crossed all boundaries of compassion a caregiver should share with patient.  This feeling felt pure, it stirred vulnerability and removed defenses.  Sensuality passed through me, I would say us, but I fear speaking for the dead.

And the feeling passed and left my body in return for defecated fear; an unreasonable fear justified only by witnessing death daily from this unforgiving disease.  And I was afraid to be this close to her despite the coverage I had from my suit.

Susie knew this fear, “Tim, are you OK?”

No response.  I could only think about moving this woman away from my body.  A bipolar moment thrashing my humanity.  I moved her away and she held on.  My strength overtook her and when she released I followed with the empty words: “You OK, You OK, You OK.”

The three of us retook her weight the moment she gave up.  Her knees were not hard to bend, she allowed me to lower her backwards to the mat as my hands slid from underneath her shoulders down her upper arms, to elbows, wrists and hands.  This time I held her.

Gloved hands squeezed her bony fingers.  And I held on.

Susie and Kim, one or the other said, “You good Tim?” I lied, “Yeah, see you at doffing,” and they made their way to our colleague who would soon spray our white suits in bleach so we could safely remove them to exit the red zone.

And I held on.

And she looked at me, her eyes reaching out for another embrace.  So instead I said something useless to her then laid her hands upon her chest.

 

 

 

 

A walk into an Ebola Treatment Unit. Published in Intima: A journal of narrative medicine.

Ebola

This is part of a larger series of narratives that look at resilience in the face of extreme suffering here is a child, plastic chairs and a glance into the ETU.

http://www.theintima.org/the-sunshine-chairs

Survivor Tree