Friday, November 22, 2013

16 and 17 March, 1999, Cavite, The Philippines

9:55 PM, 16 March 99, Kalapayan Estate

Exhaustion. Up this morning at 5:30 AM, cold shower, bus to hospital at 6 AM, breakfast, some announcements, a short effort to arrange some chairs in an airless room, then: families, patients, families, patients, one after another, after another, after another.

We passed them on the bus ride to the hospital this morning. They were camped out under the few trees in the courtyard of the hospital, holding rags to their faces against the dust. One after another, after another. Large families clutching a tiny infant or dark-eyed toddler, a preschooler in her ironed Sunday dress, school-uniformed elementary school students – elbows linked with older and younger siblings. The teenagers swaggered in, often alone, with baseball caps just so, a practiced attitude in their walks, a quick hand lifted to their mouth to hide an unrepaired cleft of the lip. If their palate is affected they are reluctant to speak and difficult to understand.

I use translators for the first time. I am assigned a group of first year medical students from the local university. They switch effortlessly from English to Tagalog and back. I remember from training to keep my eyes on the person I’m talking to. Tagalog is at once guttural and musical. There is a rhythm to it but I’m lost without any of the familiar cues of French or Spanish. I remember hello. I remember thank you. I don’t give out much good news. Every possible patient is funneled to me at the end of the screening process, after being poked and prodded and weighed and discussed. I review their files and make sure all the paperwork is there. Then I make sure they understand. In many cases the answer is no, clearly no: we can’t help you. Your case is too difficult, too complicated, your child is too sick, your baby has a fever, doesn’t weigh enough, is too young for the risk of surgery.

Operation Smile uses established parameters. For our safety and the safety of our patients, no child is offered surgery under a certain age or outside a prescribed state of health. We are a surgical mission with a beginning and an end. The odds of a safe, quick recovery must be in our favor. We must avoid complications. Despite the flow of humanity here, the pleading, the 12-hour bus rides with screaming infants, despite the evident, palpable desperation for a normal life, we say no.

Many show up with disorders we cannot treat. I meet a little boy, Miguel, with Apert’s Syndrome, a rare syndrome closely related to my son Trevor’s diagnosis, Crouzon’s Syndrome. Like Trevor, Miguel needs massive staged surgeries only available in Los Angeles, New York, Paris, and possibly Sydney. Suddenly I became an advocate, pulling Miguel’s file for an Australian surgeon who is briefly visiting our team to review possible teaching cases for the hospital he is affiliated with. “Rare” is interesting. Rare is a teaching opportunity. Rare might get little Miguel some help.

A local advertising poster created for our mission mistakenly included a photograph of a child with a large encephalocele. These are defects involving the protrusion of the brain through the skull (a crude layman’s description). They are different and dangerous to remove in the best of circumstances. Because of the poster, many children and adults with encephaloceles show up and, in each case, it is up to me to explain “no” to them. No, it is too dangerous. No, we can’t offer you help.

A father enters my room, his wife, cringing, a few steps behind him. This is his last stop in a long day of waiting through each rung of the screening process. They traveled four hours in the back of a jeepney, the local open-backed panel-truck-like public transportation. He holds his tiny daughter in the crook of his elbow. Her huge head, elongated by a cruel encephalocele, is cradled in a pillow. The growth is so enormous she can’t turn her head from side to side.

The screening doctors gave him the reality. I am thankful for this. I am hot and tired and my legs are sticking to the plastic chair and I don’t want to tell anyone else there is nothing we can do. The little girl is tiny and quiet. She doesn’t cry. She barely moves. Her father holds her carefully, tenderly. There is a shocked look in her round dark eyes. The hair on the side of her over-large head is lovingly brushed back. On her neck there is a tiny gold cross with a dark pearl at the center. I ask him the usual questions, the ones I repeat all day, the ones my savvy translators memorize and, I suspect, improve upon now that they understand why I am here. “What did the doctors tell you? Please repeat it to me. Do you understand? Do you have any other questions? Have you eaten? Do you have a place to stay, a way to get home? I’m so sorry we can’t help.”

I touch this father – put my hand on his shoulder, squeeze his arm. I touch his daughter; trace my finger through her silken hair, brush it up past her perfect ear. I show him a photo of my son. I look him in the eyes and ask the translator to tell him I think I know how much he loves his daughter.

17 March 1999, late

You keep on working. You do the job you remember how to do. The people astound you, alive in this heat like a wall up around your ears.

I make sure and look into everyone’s eyes. I know the words coming out of my mouth only make sense after they are processed through my translator so I try to connect with a direct gaze. If I can communicate concern, care, some form of understanding that I know it is scary, that we are here doing the best we can – is that success? Is it enough?

They file past. In my ordinary life I never encountered adults with unrepaired clefts. It just wouldn’t happen. It wouldn’t be found in the United States. The “cleft cases” I met there all were post-surgical, at least for the outwardly visible part, the lip, by the age of one or two months. Palate surgery, knitting together the roof of a mouth cleaved open to the sinuses above it, takes place before one year of age to avoid any roadblocks to language acquisition and speech development. Afterward there is the possibility of surgical fine-tuning and further consultations with speech pathologists and orthodontists. Cavite offers a parade of teenagers and young adults with hair carefully draped over a gaping mouth, hands practiced in the art of hiding themselves from view.

I sit with a chatty mother and her engaging toddler, Pilar. Her smooth dark hair is clipped back by yellow and blue butterfly clips matching her smocked dress. When Pilar gets fussy her mom plucks a bottle of milk from her bag, tilts her child’s head back and drips a steady stream of milk into the cleft just off the center of her face.

I meet people kept in the house, the closet; kids tied in the backyard, hidden for the length of their lives, children from the streets with thick lines of dirt on their necks and no school learning, no language, no voice because of their broken lips, the broken roofs of their mouths.

My throat hurts from talking. I hear myself repeat the same questions, say the same things. I hand out crumpled translations I brought with me from the US: help for school, for speech, help for nutrition, and help for what now feels like trite American self-importance: self-esteem. Sweat pours down my back and sticks my legs to my cotton skirt. My head feels starchy. Someone from the team walks in and shoves a water bottle onto my lap, “Drink! Are you drinking? You need more water.”

I take a drink and clear a little and nod and look into beautiful dark eyes, touch an arm, smile, squeeze a shoulder, chuck a small chin. I ask again and again, “Do you understand? Do you understand?”

Tuesday, November 19, 2013

14 March 1999, Operation Smile, The Philippines

I’m on my way. Blessed and cosseted and fussed over by family and friends, fretted over by Trev, and worried myself by the plague of health difficulties dogging me for the past few weeks. I am off. Somewhere over Canada, within 1000 miles of the Pole or so our pilot claims, I’m flying nonstop to Tokyo then on to Manila. Tomorrow night I meet the various players in the Operation Smile mission I will participate in. It is difficult to sit here, still, after all the preparation. I know I’ve not done enough. Imagining conditions and dynamics halfway around the world is just that: imagination.

As a last minute stand-in, I scrambled to get ready, to gird my loins as my friend Bonnie would term it. The hurry and the planning of the past few weeks make me, not complacent in attitude, but anxious to fly – to experience the experience. I know part of the get-ready work is to be open to it, to expect the surprise, and welcome it. I feel it now with attendant butterflies. All of the tired clich├ęs apply: roll with the punches, make lemonade when life serves up lemons, etc. This is the element of my mission I am ready for even if I can’t remember all the medical jargon and the few phrases of Tagalog I’ve drilled into my thick skull. I know how to take the unknown part, the shock-part not in the itinerary or listed in the mission plan. I know what it is like when chance throws a big punch, a baby you don’t recognize. I carry this with me and hope to gently testify. I intend to work hard. I expect to learn. Terri, the speech pathologist who served on last year’s mission to Cavite, the location where I will be working, told me she wanted to give but came away with much more. And so: I travel to the Philippines with a somewhat selfish design and, I hope, not too many illusions.

On this note I christen this particular travel journal of mine: a record of learning and reflection for the next few weeks. I anticipate the visitation of memories, a testing of whatever mettle exists within me. I wish to spin my cognitive wheels a few times and churn out observations as best I can for further examination.

(Later) 14 March 1999 Over the Pacific

My life carried me here, a fourteen-hour flight from New York to Tokyo, in a circuitous fashion. I serve as the representative mother on my mission team, because I am the mother of a special child. I am here because I am divorced. That bitter parting spurs me to grow, push my limits, and force myself outside the safety net. I’m here for the curiosity, adventure, and the goody-two-shoes factor. My pain can be put to use: to help soften someone else’s. What a waste if it were just that, left as pain: lonely nights in fluorescent-lit children’s hospital wards, anxious hours and days spent picking through medical texts, talking to other families, quizzing doctors and surgeons. I am an expert, an expert on Trevor only, but still an expert. During my accumulation of knowledge I didn’t dream it could be extrapolated into something worth offering to others. In many ways it confounds me now. It’s difficult to see the road here through the pain and the blame, self-doubt, horror, and sometimes terror.

I must do this. It would be wrong for me not to. I recognize the element of selfishness. I make this journey for myself. To face it again. To face it down. 

9:42 AM, 15 March 1999, Manila, Philippines

I checked into the hotel last night after a crowded flight from Tokyo, so crowded it seemed people were sitting on each other’s laps. I was lucky to sit next to John, my team leader for the Cavite mission. We were both tired and there was a high noise level but I did get to pick his brains a bit and try to clarify for him my anticipated role in the surgical mission. I liked him, a laidback Midwesterner, calm and intelligent but approachable in a way many surgeons in my experience are not. He seems glad for every support he can get and agrees there is a need for patient and family education, the role I hope to fill on this trip. I drew a bit of confidence from his endorsement. This is his fifth mission to the Philippines, second as a team leader, and first mission to this site, Cavite. He said our mission will be the second of the usual series of five Op Smile makes to a particular hospital/location. They try to address the initial crush of unrepaired cleft lips and palates in a given district and, at the same time, educate and train the local surgeons. After five yearly visits the goal is to leave a mission site self-sufficient enough to care for arising cleft cases and the referral of more difficult diagnoses. The Cavite team is one of five traveling to different parts of the Philippines at the same time. Our team will be closest to Manila, an urban site on the same island, Luzon.

Last night - really early this morning, I think it was around 2 AM local time, all of the teams convened in the banquet hall of our hotel. We picked up our IDs, itineraries, and other paperwork, listened to an abbreviated speech from the exhausted Op Smile Philippines coordinator, drank orange juice, and ate pieces of what tasted like angel food cupcakes and, after chatting it up with old friends and new acquaintances, dispersed to our room assignments. I managed to meet briefly with the only other Family/Patient Educator, Joe from Chicago. He is enthusiastic and full of concrete plans for each stage of his assigned mission. Unlike me, he’s had months to prepare and plan what he will do. Since I was asked to attend less than a month ago, filling in for someone with a family emergency, I am feeling rather unprepared next to his list of intended activities and suitcase full of supplies. My guess is I bolstered his confidence a bit.

I would call Joe a young adult. He was a participant in my Colorado training, though I didn’t get to know him well at the time. Joe has a cleft lip and possibly a cleft palate, although it is hard to tell. His speech is flawless and the surgical repair on his lip, to my experienced parent’s eye, is excellent. He is a handsome young man who I can’t help but admire: strong drive and a clear intent to spread and share the strength he’s gained from personal experience. I wish him well.

Joe made me wonder if I match his enthusiasm. It was clear to me during our training in Colorado the two groups selected to serve as trained Family/Patient Educators, affected adults (most in their mid to late twenties) and parents of affected children, held different perspectives on “appearance differences.” Clearly, the people bothered most by the grueling, in-your-face, reality-time training were the parents. Affected adults seemed to recognize the anticipated grizzly aspects of the experience and take it in thoughtful stride. I wonder, I know, this will affect our respective approaches and attitudes on these missions. Joe may, or may not, experience difficulty relating to the parents here. On the other hand, he’ll know exactly where the patients are coming from. I am only a parent who experiences “looking different” vicariously through my child. I am lucky to have a socially acceptable visage, to pass for “normal” at all times. Will it work against me in this setting? I will soon find out.

Time is topsy-turvy. Last night, after exchanging several sentences with my roommate Karlene, who is also on the Cavite team, I slept the sleep of the dead. Waking up was like starting to breathe again, abrupt gulping, gasping, and sputtering. I am dutifully watching my water intake, only bottled – even for brushing my teeth. I lost my camera. I think I parted with it when I went to the lobby early this morning to see Joe off on his flight to the southern city of Davao. Did I leave it in my chair when they called his bus? Oh well, my visuals must come from writing. So far dawn brilliantly lights a waking Manila, a lush, tropical, and very metropolitan place. The smell here is of hot tarmac and coconuts, and the clinging tobacco smoke of old hotel drapes. I haven’t met any natives that have trouble understanding me. We are warned to stay near the hotel in case of schedule changes. Flying in last night we crossed miles and miles of lighted civilization. Beyond this eighth floor window there is sprawling urban development. However remote I am from Connecticut and the tri-state center of the universe, there is an abundance of life here: heated, tropical, crowded, and dissonant.     

I must bring my bags downstairs. The bus leaves for Cavite in 20 minutes. We settle in to our living quarters tonight. Tomorrow we start a week of screening patients for surgery next week. Work begins.

Tuesday, November 12, 2013

The Uses of Pretend, Circa 1987

“Mom! Josh won’t leave me alone!”

“Josh, leave your brother alone.”

“Mom! Josh called me barf breath!”

“Josh, don’t call your brother barf breath.”

“Mom! Josh poked me!”

“Josh! Get away from your brother now . . .”

The boys were cranked up from cake and ice cream and too many toys. I was exhausted from cake, ice cream, party managing, and too many toys. It was the perfect time for sibling rivalry to rear its ugly head.

The deck was littered with squashed boxes and ripped paper. Tables and chairs were strewn with sticky paper plates and napkins. Only the yard remained birthday party-ready. I rented a large helium tank, far larger than I expected, and so, generously tied bunches of balloons to every shrub and branch I could reach. They floated above the green early-summer grass like monstrous bouquets.

Josh put his younger brother in a head lock. He was intent on strangling the recipient of all the attention.

“Josh, go and gather all the balloons from the yard. If you can get them all tied together you can keep them. Trev, go inside and wash your face. You are helping me clean up this mess.”

That was the day Josh invented sky fishing. He grabbed his fishing pole to use some of the test line for tying the balloons together. The rest, as they say, is history.

I looked out in the yard after Trev and I finished stuffing the garbage bags. Josh was flat on his back in the center of the yard. He was holding the fishing pole and feeding out line into the sky. I craned my neck out and leaned over the railing, not clear about what the line was attached to. On the sidewalk in the front of the house I saw our elderly neighbor George walking his dog and tilting his head back. He was shading his eyes in order to get a better look at something in the sky. I walked down the steps and looked up. A large bunch of balloons was sailing eastward above the tree tops.

I ran into the house and grabbed an old picnic blanket. When we joined Josh on the grass, the balloons were suspended above the house next door and heading for the park. The current in the higher elevations became turbulent. Josh struggled a bit to handle his “catch.” By now the balloons were colorful spinning dots in the distance.  We talked of clouds and migrating birds and prevailing winds.

The remainder of the afternoon was spent in various balloon experiments. Josh and his Dad figured out how to lift small water balloons and release them to bomb our side yard and garden. Then his GI Joe paratrooper action figure came out. It was fun to see him gliding confidently down with parachute billowing brightly behind him. After I got Trev off to bed that evening, we went back outside again, added a few Mylar balloons to the bunch, affixed a small pen-light and, giggling in our collusion, perpetrated our own UFO hoax on the neighborhood.

Later in the summer, we put together a party for Josh’s birthday. The guests arrived combed and cleaned and ready for musical chairs and pin-the-tail-on-the-donkey. Instead they went sky-fishing. When their parents returned, they found their children resting on scattered blankets and angling big bunches of balloons in the airspace above our house.

When Trev was four years old he wanted to be He-man, Master of the Universe, for Halloween. It was six weeks after a surgery that left his jaws wired shut. Despite my most creative efforts pulverizing cheeseburgers and spaghetti with my blender, he was emaciated from the required liquid diet. His sunken eyes and bony knees gave me little to work with in the creation of a beefy blonde warrior.

I made a yellow yarn wig, no problem. I picked my way through the rest. I decided to put together a new body for him. I took a set of white sweats and dyed them to a pale flesh tone, then lined them in the appropriate places with cotton batting, making beefy arm and leg muscles. Using my rudimentary sewing skills I managed to quilt He-man’s signature washboard chest.

Trev couldn’t wait to try on the muscle suit. We added a skimpy pair of red shorts and makeshift studded armbands and he became He-man: the Super Hero who spent his spare time catching meteors and plugging erupting volcanoes. My sister contributed a blue satin cape and He-man learned to fly. He practiced every afternoon from the third step.

Long after Halloween passed, after Trev’s jaws were unwired and he ate through his Halloween cache of Milky Ways and Reese’s Peanut Butter Cups, He-man would make sudden appearances at our dinner table. I found him vainly flexing his muscles in front of my bedroom mirror. I looked out the kitchen window and saw him playing with the kids next door. Often, I tucked him snugly into the bunk bed above Josh.

Most of the time now Harry just sits on Trevor’s bed. Like Josh’s over-sized Garfield doll and worn stuffed bunny, he guards my children’s dreams. Harry is big, about the size of a three-year-old. There are corduroy horns on his head, plastic bug-eyes, and a bulbous, warted green nose. His body is covered with shaggy blue fur. His mouth is set in a permanent leer. Run your fingers through his fur and you’ll find it punctured from numerous IVs, blood tests, and catheterizations. He’s withstood more rectal temperature takings than anyone I know.

Harry is Trevor’s personal monster. When Harry first appeared in our home, under the Christmas tree with a large bow attached, Trev was a little afraid of him. He soon discovered Harry was afraid of the dark, the dog, and even the cellar stairs. Trev helped him. After all, a monster can’t live his life in fear.

“Don’t worry,” Trev told him, “I’ll show you how not to be ‘fraid.”

And he did. Trev would get a shot, turn to Harry and say, “Now hold still. This will only hurt for a second.” Harry cried and fussed but he never got away.

“You have to have it Harry, if you want to get better.” Trev was patient but unrelenting. Blood pressure cuffs, stethoscopes, and urinal bottles were explained again and again to the forgetful Harry. He’s been taped and bandaged and oxygen-masked. Trev generously shared his IV pole with him on many occasions.

Over the years many doctors examined Harry, listened to his heart and peered into his blue-haired ears, and pronounced him a difficult case. Harry is a lucky monster. With Trev’s help, he has survived.

Trev was strapped into a bed in the Pediatric Intensive Care Unit. Between the IV lines and drainage tubes, I held his hand. I sat in a metal fold-up chair pushed close to the bedside and rested my chin on the chrome railing. The whoosh and suck of the ventilators beat slowly in the background. I whispered stories to him.

They were outlandish tales. Tales I loved, starring Trev and, his brother Josh, with their pretend names of Hong Kong Heart-out and Ryu. They were bold knights searching in dim caves for a key to an invisible castle, or space adventurers planet-hopping to battle menacing aliens. Ryu chased dreams and demons across wide blue skies. Hong Kong Heart-out flexed his biceps and befriended tormented ogres and threatening trolls. They rescued worlds, saved us all from destruction, and then came home to finish their homework and eat macaroni and cheese for dinner. 

Thursday, November 7, 2013

7 March 2013, Introduction to The Uses of Pretend

7 March 2013

I am rewriting a series of vignettes about Trevor and Josh. These slices of my life are from an earlier time. They were gathering dust in a blue three-ring binder at the bottom of a box of old papers. I came close to recycling the whole shebang without examining the contents. These short histories emerged from my past and into the light like a time capsule, something I wrote long ago in a mindset I am now wholly unfamiliar with. Was it me?

The voice I used to tell the tales is oddly squeaky, oddly Pollyanna-ish. I think the original intent for the snapshot writing was as a contribution to a support newsletter for parents like me, parents of children born with a craniofacial disorder. I wrote them during a midstream period of parenting when Cub Scouts and spelling tests demanded my attention along with weekly visits to the doctor and developing a network of people I could call when I suddenly needed to stay overnight at the hospital. Life with a child impacted by complex medical needs included a surgical team, hospital stays, and many other health-related necessities. The stories are entitled, “The Uses of Pretend.”

I am struggling to tighten them up. I feel like shaking the writer of these tales, grabbing her by the shoulders and slapping her. Was I so upbeat? Was I that person? Me? Or was it artifice? “Oh fa-la, my kid is in the hospital again, not to worry: I am super mom.” Here’s the deal: I wasn’t. Maybe I fancied myself as super mom in a Walter-Mitty-alter-ego way but when my kids were making their way through elementary school, my present-day memory tells me I was a rumpled wallflower. Yes, I was deeply involved in my children’s education but I was far removed from the belle of the PTA mommy ball. I was the tired bifocal-wearing, scruffy-jeaned, and un-styled-hair-type mom driving the old Volvo station wagon with a barking beagle in the back. My writing dreams were only that then: dreams. I kept my journals hidden and secret and filled them with grousing and longing and, yes, my own brand of pretend.

My tone in the newly discovered pieces – written to share - is, by and large, upbeat, reassuring, and steadfast. At least this is what it sounds like to me today. When I first came across them I thought I’d somehow find a place for them in my current major project – wait, spell it like it is, all caps: MAJOR PROJECT. This project, currently absorbing the majority of my writing time, purports to chronicle my life, my growing years – a memoir drawn from my journals. I sit down to transcribe the new stories and find myself not recognizing myself. Was I that person? Gooey? Sappy? It was a long time ago. My writing chops were undeveloped. This is certain. I wasn't crafting and playing with words, fashioning them to my own ends.

It is the nature of this early writing I find a little frightening. Part of it is not acknowledging, during the darkest hours, that I was caught in a dark vortex: scary parenthood coupled with marriage to the wrong person. That should be in all caps, too. I wouldn't and didn't share the struggle with any of the other players in my life then, the teachers, doctors, and other mothers populating my life. Did they know? No matter: I pretended. I was pretending. The title “The Uses of Pretend” colludes with that notion. I keep on looking behind these little stories – these brief snippets from the whirl of my life back then, thinking about the shadows, the unstated, and the barely mentioned.

Was I writing myself out of my life? Was I creating something to hide under? My first reaction to these simple, declarative narratives is: this isn't me at all. Where am I in this picture?

I look through the lens of intervening years, knowing the tough times ahead for the optimistic mom, den mother, cupcake chef, and vacuum-er of Legos. My old journals are so constantly a part of my life these days. I work daily to transcribe the labored writings of a person worried about the future and worn from the constant duties of parenthood, the duplicities of a fractured marriage. Perhaps my diaries, the ones forming the arch of my story project, don’t tell me everything.

Truth be told: I never nurtured a dream of motherhood. I never featured myself in a fuzzy golden light swaddling a fussy baby, coaxing mushy carrots into a toddler, or quizzing a third grader on all the state capitols. My youthful aspirations focused on traveling the world, exploring cultures, art, language, theater, music – and writing. Getting pregnant changed everything, although, when it came along, I embraced motherhood. I was surprised by my babies and intrigued. I fell in love with them. Helping children to grow, guiding them, was a big adventure, far more than anticipated in some ways.

Still, I scratched away at my journals, late at night or early in the morning before the alarm sent me to the kitchen to pack lunch boxes. The upbeat mother who wrote glowingly of pretending to fish in the sky and making up stories with my children as the conquering heroes wrote also of longing, fear, and unhappiness. She never let anyone read the dark stories.

All the writing, all the college-ruled notebooks I filled over the years, comes together now.  I unearth each sentence and, like an archaeologist dust off the person buried there. Considering it again after a period of brooding, I am glad I was hopeful and engaged. I put on my happy face. I am glad I was writing articles to be read by others and writing in privacy to console myself. It made all the difference. The time capsule holds surprises: a repressed version of me, someone I hardly recognize, perpetrating a cheerful ruse on those around her. From a long-ago scary place I wrote my way forward, through the difficult years and into the present as a more confident, clear-eyed writer.  Gradually, imperceptibly, my two writing personas merged. Now I emerge, as ever gathering my courage as I strike out, word by word, sentence by sentence. Writing to save myself, writing to make sense of my world, writing to live my dream.