25 March 1999
Last full day of surgery – could it be so? This week, the serious work we set out to do, is almost over. Tomorrow is a half-day of surgery, an afternoon of packing, and a farewell party with the hospital staff. So much took place here so quickly. It is odd and almost unsettling. I must now prepare to leave.
Today was an improvement on yesterday. Karlene was back, but not 100%. I assisted her in the playroom but got more time with the parents. I needed it. I found, probably too late in the game, the early morning visit to the ward helps to screen for panicking parents. I made contacts with the night and floor nurses. They are only too happy to let me know about families in need of some extra attention or guidance. I sit with them and talk for a bit and tell them to look for me when they are called to go downstairs. When they arrive in the playroom there will be a familiar face.
I love to wander through and see the changed faces. There are some profound differences. There are no serious complications, a credit to the team and John’s daily cautions toward safety. Every family is struck with wonder at the change in their child. We were warned in training not to call these transformations miraculous or perfect. It is hard to gauge people’s expectations. There will always be scars. There will always be some imperfection. The families I meet here are humble and grateful. Their resilience and fortitude continues to awe me. It’s nice to be on the front line here, the one who receives the verbal benefit of this collective work. I try to convey the gratitude I hear to the people working in surgery and recovery. I need to do it more.
This afternoon, after the crush of early patients, there was a lull in the schedule. The clinical coordinator, Raphael, and the student nurses wanted me to go look at surgery. The head nurse went into the storeroom and found the longest set of scrubs she could find. I’m at least six inches taller that the tallest of the Filipino nurses. They covered my head and found me a mask and told me to keep my hands up where they could see them and to let them know if I started to feel funny.
Me, Sheila, and Karlene
I entered. Owen, one of the Filipino surgeons, was about to repair a lip on Agatha, a fourteen-year-old girl I talked to in the playroom while she was waiting for a table to open up. I knew her mother, shy and a little confused by the language differences, was sitting with the other parents out in the hallway. She desperately wanted this surgery for her daughter but was frightened to be alone so far from her home. Agatha was polite and reserved, with long shiny black hair and downcast eyes. When she responded to my questions her voice rose just above a whisper and her hand shot up instinctively to hide the defect of her mouth. Even though she was smart and made good grades, she hated school and did not want to go because she was teased all the time. Her only friends were her cousins. No one else wanted to be seen with her. Now, here she was, prone and peaceful on a narrow raised bed, chin jutting boldly into the air, arms and legs loosely crossed.
Michael, the dentist, examined her mouth and quickly pulled out four badly decayed teeth. He told me our mission might hold a record for tooth extractions. He plunked Agatha’s teeth into a tall glass jar and moved on to the other surgery to inspect more mouths.
Veronica explained the anesthesiologist’s equipment and quietly went about her work. This was a different world. No repetitious translations, no anxiety or pre-surgical jitters, no tears or runny noses or thumbs being sucked. Here was a focused and hushed industriousness accentuated by bright overhead lights starkly illuminating the young girl’s flawed face.
There was a chill in the room, an actual air conditioner in one of the windows. One of the nurses pulled a light blanket over Agatha. They taped her eyelids closed and draped her face with deep blue cloths. They were covering all but the specific surgical field. All our attention was directed towards Agatha’s mouth, her precious bane. Veronica and an assistant went to work inserting an IV, administering more medication, and placing a tube down her throat.
I hesitated to watch. I wasn't sure if I would react emotionally or suddenly get lightheaded. Strange since I like to think of myself as controlled. I carried Trevor into many of his surgeries, summoning this purposeful calmness, knowing the steadiness of my grasp, the timbre of my voice, communicated peace or panic. In this setting I was the observer. I wanted to witness the crucible of this process, the turning point. I wavered, questioning my detachment.
At Veronica’s urging I peeked over Owen’s left shoulder, resolving to keep steady and not embarrass myself, ready to step back out of the way if I felt shaky. His fingers were working rapidly, delicately slicing the skin around the inside of her cleft, matching the parted sides then carefully, quickly, stitching from the inside outward. The surgical nurse anticipated every move, suctioning and offering instruments and, at the same time, staying clear of the field, letting Agatha’s new lip emerge. I held my breath.
I stood for twenty minutes mesmerized by the process of taking apart and putting together. It was at once bloody and violent, exacting and elegant. Agatha was born with a cleft that effectively flattened the left side of her nose. After preparing the gap of the cleft for closure, Owen went inside of her nostril and, using tiny deft stitches, he puckered – almost quilted – a rounded bulb, closely matching the right side of Agatha’s nose.
Three surgeries, one room.
I left Agatha and looked through the other operating room. Three tables working, three pools of light – all cleft cases, kids I worked with in the playroom an hour earlier. One of the anesthesiologists propped a He-man action figure doll on the knee of a little boy. Christian wouldn't let go of it when he was called into surgery and we let him keep it. Muscles bursting, sword raised, He-man kept vigil over the quiet precise workings of the operating field.
26 March 1999
I should be packing. It is late. I am tired. I write.
The hospital staff hosted a party for us this evening, a band and food in an open pavilion out in the fields of a local mango plantation. We arrived too late to see what was around us but a sweet aroma hung in the air. All of the medical students and nursing students attended. The food was pork and vegetables and rice, again. I've learned the cheaper rice contains a greater percentage of pebbles. Nothing makes hunger go away faster than having your molar descend on something small and unbearably hard. I've lost weight.
The party was fun. Even the sisters got out and boogied on the dance floor. John and the other doctors let loose and were pulling everyone into the mix. I swear I’m going to take dance lessons. This happens to me every time I go to a wedding. My two left feet need training.
Sheila and Jennielyn and Romille, my translators and ambassadors, were there. Jennielyn went up to the microphone and blew the crowd away with her strong, clear voice. She sang some current pop tune all seemed to recognize but me. Everyone clapped and sang along. What a surprise she is.
Karlene, Me, Isabel, and some of the many nursing student volunteers.
There was a light surgical schedule this morning then we packed up or donated our remaining supplies and equipment. Karlene and I assembled a toy bag for Jessica, the little girl with Down’s syndrome, and her mom, Lady. They returned home this morning. I hope to send her some information and contacts if I can find any when I get back to the states.
I brought the rest of the toys over to Darcy in Physical Rehabilitation. Her department is the only one in the hospital with a contained playroom. She gave me a tour and introduction to everyone there. She was such a great help to me.
I handed out the rest of my goodies. I will return home with a half-empty suitcase unless I manage to do some souvenir shopping. Tomorrow we travel to Manila. All the OpSmile teams from throughout the islands will converge for an evening celebration. Sunday, we disperse.
My last night in Cavite. I am used to the truck noises from the highway. The air is still tonight, no breeze to move the light curtains across the open doorway on the balcony. I can smell the garden. I am lonely for Josh and Trevor. After I get my bags in order, maybe I’ll take one last swim in the dark.
28 March 1999, Osaka to Detroit
I’m going home, six hours into a thirteen hour flight. My legs are asleep and I may never get them back. I stick them out into the aisle when the traffic dies down but there is no relief. I am driving the young couple next to me crazy with my restless fidgeting.
Robin Williams is on the movie screen doing some silent fantasy/tragedy thing, “What Dreams May Come,” I think it is called. I wonder if there should be a question mark after the name, as in being afraid to go to sleep. I am not afraid. Sleep is very welcome here. I wonder what dreams will come to me, with all my fresh adventures.
My new experience for today? Sushi. They served it for dinner with chopsticks and I went for it, rice and all. I liked it too, though I think I provided some entertainment for the Japanese people surrounding me on this flight.
Ahhh, back to confused hours, confused days. I do hope I get to sleep before I go back to work. Back to answering the phone, watching the market, the big black filing cabinets, the Hirschfield prints, and my day long view of the water cooler. Back to my kids. I love them more. Back to the dirty melting snow and roads with street signs and stoplights and aloof, angry SUV drivers. Back to permission slips and smoked turkey school lunches and orthodontist appointments.
I keep thinking about a portion of my training for this mission. We were all exhausted and wrung out from the constant activity and in-your-face intensity of preparing for an Op Smile surgical mission. Many of us were upset, raw from the touchy-feely probing of attitudes and histories with facial deformity. There were myriad stories of devastation, anguish at the way outsiders can be callous and unthinkingly cruel to people who look different. There were stories of lasting physical pain from continued surgeries, social isolation, and emotional desolation from living distinctly outside the mainstream ideal of physical perfection.
Will, our guru, the person who assembled our group, conceived, developed, and ran the training program, was giving us all a chance to decompress before we concluded our weekend together. We sat in a circle. He asked us all to respond in turn to this question: Given your experience with facial difference and its effect on your life, if you could live your life again would you deliberately choose to remove the experience of facial difference from your life?
This was a brutal question for me. I sat there, mind churning, thinking of all the growing forced upon me after the surprise arrival of a son, a child welcome but wholly different from my sheltered, comfortable experience.
The answers progressed toward me, parents recognizing the added challenges, affected adults finding value in their suffering. The turn came to Matt, a young adult severely affected with a deep, open cleft of the face. I worked with him several times over our three days. He reminded me very much of Trev, awkward and shy but eager to do the right thing. His defect made him difficult to understand and would serve to clearly place him outside any accepted norm. Yet he was earnest and affable and a sweetheart. Anyone would understand his hatred of circumstance and a fervent wish to be whole.
He took a while to start talking. His voice was soft and its effect was to make each one of us lean forward at attention. He chose to keep his facial difference. It was him. To take away his experience would take away too much of what he was. His life was difficult. He paused. People he met found it hard to look past his facial difference and see the person, the human being, behind it. Sometimes he wished it would go away so he wouldn't need to deal with it every time he went to the bank or the video store. But his defect enabled him to see others in a different, maybe deeper, way. This was the thing he didn't want to lose.
The bottom dropped out for me. I was humbled, made much smaller by this brave young man. My gut told me to offer an arm, a leg, my sight for my child’s safety, his comfort, his health. What gift could there be in his suffering? I support a quiet burden of guilt for the pain I witnessed Trevor endure. Yes, it is part of him, it made him and can’t be extricated from the whole.
How often I wished it away, wished it was some other parent. In the beginning there was a sense of unreality to it. I was going to wake up from a bad dream. It was too much, too tortuous a life for an infant. With disorders of appearance you miss the part when it is not only sad but innocent, childlike, and therefore attractive, “A sick kid! How horrible! Especially since they are so endearing, those poor babies. . .” No cute here. Your face, your "interface," your window/door to the world. It is not a heart condition or some other lurking insidious clean calamity, it is there for everyone to see but no one wants to look. You become inured to the world looking away, averting their eyes. A facial difference is like a social disease. There is no poster child. There is no cute, no endearing.
That very same weekend I looked at a large poster of a mother in Thailand, clutching her affected child in tender obvious love. I told my group, “I've been there. I know how she feels. She doesn't see a cleft or any deformity. She can’t see it anymore, only when someone else looks at him, only when a stranger’s eyes stop on the surface of him. He is the child she loves and she wants everyone to see how lovable he is.”
When Trev was very small this happened to me. I couldn't see he was different. His features were beloved to me. It is a perspective made up of part love, part wishful thinking, and part self-protection. The determination behind it, the knowledge, brings me here today, flying home from the hardest work I’ve ever done.
I met Rodeth’s mother at the airport as I was departing from Manila. I didn't recognize her at first, she was wearing a plain blue baggage handler uniform. Rodeth was in the first wave of surgical patients. Her mom was very much like all of the other mothers I met. She was scared. She loved her child. She was desperate to get any kind of help. “Ma’am Trudy,” she said, “Thank you, thank you for everything. Rodeth is beautiful.” She came out from behind the counter to embrace me.
“I know,” I said, “I know.”