Early in the morning, December 25, in Cotonou, Benin, West Africa, none of the cultural cues around me hint that it is Christmas Day. Outside, the fierce tropical sun is relentless. I have not been within a thousand miles of a shopping mall in months. Instead of a "stocking hung by the chimney," I place my sneaker outside my cabin to encourage other crew members to leave their mostly homemade gifts. Aboard the world's largest non-governmental hospital ship, my Christmas celebrations have a refreshingly international flavor, yet I miss the cold, wet air of my native Washington State. I miss colored lights, pine needles and furry, red Santa hats.
Our thirty-bed surgical ward is half-full when I arrive at work that afternoon. We tried to discharge as many patients as possible over the holiday, but many live in the northern regions of Benin-too far from the port city of Cotonou to travel home. Despite the ship's air conditioning, I sense December's humidity hanging heavy outside. In one bed, a thin Fulani woman with intricately braided hair recovers from facial reconstructive surgery. At shift hand-over, a German nurse expresses concern that this woman, Souma, might be depressed.
"I don't think it has anything to do with Christmas," she clarifies. "I don't think she knows what Christmas is. I just think she's lonely."
We pray for our patients by name, as we do at every shift change, and I offer to spend time with Souma during my shift. I call our ward counselors, Danny and Sandy Welch, and ask them to make a special visit this evening. The Canadian couple has spent countless hours with Souma, taking her for walks on promenade deck, playing Chutes and Ladders,(TM) assembling puzzles together and working copious amounts of hand lotion into her dry hands and feet.
Since the majority of our patients speak only tribal languages, non-verbal communication is vital to relationship building. Local translators work round-the-clock to facilitate our communication. Any day of the week, our job descriptions may include the duties of an occupational therapist, linguist, social worker, speech therapist, nutritionist, wound care specialist, counselor, pharmacist, lactation consultant, housing coordinator and taxi driver.
My workplace is the M/V Anastasis, the flagship of the Mercy Ships fleet-floating hospitals whose trademark goal is "bringing hope and healing" to the developing world. Our clients are the poorest of the poor. Often, the per capita income in these nations is less than $200 per year. The Mercy Ships offer free surgeries, medical and dental clinics, and construction and sanitation services in West African nations such as Benin, Togo, Ghana, Guinea, The Gambia and Sierra Leone, as well as Central American nations.
Along with 350 other volunteer crew members, I pay a monthly fee to work on board. We hail from thirty-five nations and speak as many languages. Our ages range from twelve months to seventy years. I have traveled to seventeen nations with the Anastasis, but aside from the travel, I love my job so intensely that sometimes I consider that I might be dreaming my way through life.
Seeing Souma for the first time, I am once again fiercely thankful that my lips and nose and eyes are intact and in their proper location. At surgical screenings in several locations around Benin, our medical team selected hundreds of people like Souma for maxillofacial, plastic, ENT and cataract surgeries based on a short history, physical exam, lab work and a surgeon's evaluation. Souma traveled fifteen hours by bush taxi to Cotonou, where the Anastasis will be berthed for seven months.
Surgeons scheduled a series of reconstructive procedures to repair damage from cancrum oris. This condition, called noma or the melting disease in some parts of the world, is a gangrenous infection that, if untreated, can destroy the soft tissue of the face within days.
The World Health Organization estimates there are 100,000 new cases of cancrum oris annually in sub-Saharan Africa, striking the "weakest and most defenseless members of society-young, undernourished children of destitute families."1 Mortality is high: between 70 and 90 percent of those with cancrum oris die.2 Those who survive spend the rest of their lives with radical facial disfigurements.
Cancrum oris was widespread in Europe until the end of the nineteenth century, when improved nutrition and sanitary conditions virtually eradicated it. Noma was last seen in Western nations in World War II Nazi death camps. Extreme poverty, malnutrition, lack of basic sanitation and preventable diseases (typically, measles) all contribute to cancrum oris.
Penicillin will treat the infection, if affordable, accessible and given early enough. Without antibiotic treatment, some people survive noma. In the aftermath, however, those living with the shame of a grossly damaged face sometimes admit they wish they would have died. In nations where cancrum oris is prevalent, suspicion and mistreatment of the disfigured is common.
In these rural, animistic cultures, the disabled and misshapen are often considered cursed. Shame pervades this belief system: "She must have done something evil to bring this kind of suffering," is a common suggestion. Souma lived, as most West Africans with cancrum oris live-alone within the walls of her mud-and-stick house. No melting disease support groups exist.
Cancrum oris may destroy the lips, gums, cheeks, nose and eyes within days, but the psychological damage occurs over years. The emotional injury can be a festering wound that never heals, repeatedly scratched open and poisoned with each scowl, insult, gasp and hurled stone. The eyes of those affected reveal a rejection and a pain that invades to the core. Children cannot attend school because of the mistreatment. Women rarely find husbands. They are known as the ugly boy, or the witch lady. Toddlers are kept behind closed doors. Families subsist on the edge of villages.
Some patients report that they have lived twenty years or more without one instance of respectful human touch. Repeatedly, a haunted, hopeless, socio-phobic gaze suffuses their eyes. On screening days, we must arm ourselves with experience and a steely determination to reverse this emotional damage. We brace ourselves and smile, trying to counteract their castaway stare by simply making eye contact. We offer handshakes as simple therapy.
Souma's story is not unusual. Many years ago, a small sore developed in her mouth. After several days, the sore grew large and scabbed over. Desperate and overwhelmed, Souma consulted a local healer and spent her few pennies on ineffective cures. She inspected her face daily over the next two weeks. To her horror, within that time, the necrotic ulcer destroyed most of her right cheek and upper lip. Souma's immune system overcame the infection without treatment, but scar tissue formed around the hole in her cheek, drawing her right lower eyelid toward her mouth. Her jaw ankylosed during the infection, and Souma survived by mashing soft food between her exposed teeth. She looked much older than thirty-five.
Mercy Ships surgeons perform artistic feats with skin, muscle and bone, modifying existing maxillofacial and plastic techniques to cover these large defects. Surgeons may combine Estlander flaps, Abbe lip-switches, Temporalis flaps, Scalping flaps, Kara-pandzic flaps, and Visor flaps to reconstruct features. Souma's reconstruction took six months and included a release of TMJ ankylosis, Estlander and Temporalis flaps and a commis-sureplasty. Yet these transformations do not occur overnight.
The process is long, painful and often discouraging. Between surgeries, patients must relearn to use their faces. They practice mouth exercises several times a day, using diagrams on cards to illustrate range of motion. The exercises increase flexibility and control of newly constructed faces. The repeated movement increases blood supply to the tissue, decreases swelling and promotes healing. Excessive drooling diminishes, as mouth control improves.
After releasing a TMJ ankylosis, patients must gradually practice opening their mouths. We tape tongue depressors together in gradually increasing stacks, which are wedged between top and bottom teeth for specified lengths of time.
Later in my shift, I join Souma for her mouth physiotherapy. She indicates that she is ready by sticking her tongue out at me. Her lips are stitched together, with only a small circular opening. Part of her chin is now her cheek, and sutures near her ear glisten with neomycin ointment. I bring the stack of laminated cards to her bed, and we practice blowing raspberries at each other. We roll our tongues from side to side. We puff our cheeks, kiss the air, and make fish faces at each other. To better understand Souma, I sometimes stand in front of my bathroom mirror and squash my lips into similar contortions. Locking this expression, I try to smile and speak. I try to drink water.
After these exercises, Danny and Sandy Welch visit Souma. Through a translator, they explain the Christmas story. Building on the Jesus film and cartoon Bible stories she has watched on countless evenings, Souma hears the gospel for the first time. She considers her friendship with the Welches, the transformation of her damaged face and the unconditional acceptance offered by the first Christians she's ever encountered. Then she nods and repeats a short prayer in Fula. Souma raises her healing face and opens her eyes into her new life.
Our ship's captain brings down gifts for the patients. They are meager gifts: a paper lunch sack decorated with crayon Christmas trees and snowmen. Inside are a few personal grooming items for each recipient: a toothbrush, a bottle of hand soap, a comb and a tube of Chapstick.(TM) As our translators pass out the gifts, I watch each patient handle the items as if they are fragile crystal treasures.
I notice Souma sitting on her bed, exploring her gifts. She holds a red palm-sized mirror in the light. Her head tipped back slightly, Souma carefully paints her lips with the cherry Chap-stick. Every motion is elegant and graceful-poised as if she is primping for an expensive dinner date and a Broadway show. Souma's dinner will be softened macaroni and vegetables squeezed between her sutured lips and water from a plastic cup. Her show will be another viewing of The Prince of Egypt on the ward TV, or perhaps a crew member with a guitar will come down to sing African songs with the patients.
Souma becomes aware I am watching her and drops her eyes with a shy smile. Observing her, I understand that this woman simply wants to be beautiful again. She wants smooth, full, cherry-flavored lips. She wants to eat without food falling out of the hole in her cheek. She wants her nephews to visit her without cowering in fear.
I am momentarily blinded by Souma's shimmering beauty. Suddenly, Santa hats and twinkling lights have no meaning. I can't imagine a better place to spend Christmas than right here, breathing deep in the air of human connection. I am intoxicated by it. Souma lifts her gaze again to match mine, and I smile at her. With this approval, she returns to her Chapstick application. I blow a fish kiss at her, but she doesn't see me. Souma is smiling.