Thursday, March 5, 2015

The Irony of Christmas Lights

It is another bad weather day. I’ve gone for a walk to the end of the road and back and will be going out again with Patty the puppy. Josh and Sharron left her with us while they are traveling to a friend's wedding. It is good to get outside despite the work of boots and hats and scarves, despite the weather. As I sit here at my desk I can feel my feet growing colder, losing circulation. I think the snow is stopped and it is a good thing. The woodlands are blasted with it. We’ve had enough. I wrote to Trev yesterday and found myself telling him I am staving off depression. I think this is the truth. It has been a dark winter.

In November and December I look for the details of the changing seasons and appreciate the subtleties, the grays and browns and whites, the delicate nature of trees under a mantle of snow, the pale sky. My wardrobe switches and I don’t mind wearing something different, something I haven’t seen in six months. I build fires in the fireplace and enjoy the crackle and radiant warmth of the flame. I gather the ingredients for soup and casseroles, dust off the slow cooker, and fill the closed-up house with the aroma of savory roasting and baking. I keep a few lap blankets in the living room, ready for use by readers and TV-watchers. We fill the birdfeeders on schedule and watch as the woodpeckers and juncos struggle through the heavy snow, gripping the swaying clothesline as cold wind drives through the backyard.

Now, March, I am weary of it all. The ice drips rhythmically from the roof. There is a thick patch of it on the front step and another at the top of the driveway near the mailbox. The driveway sand is making its way into the mud room and across the kitchen floor. The plowed snow alongside the garage is several feet above my head. The house is enclosed and chill. We program our thermostats for the economic use of heating oil. I am cycling through my wardrobe of fleece and wool, again and again. The kitchen and living room smell of turmeric and the baked beans we made last week. There is a tossed-together pile of drying hats and mittens across from the laundry sink. The floor is a tangle of boots. 

We can’t get onto the back deck any longer. The Christmas tree is still there, encased in a diagonal drift. I left the lights on it. I left them on, a little something to cheer me as I check on the state of the sky each evening. It is the irony of Christmas lights.






Friday, June 6, 2014

Holding On, Letting Go


Holding on.  

Sometime around early January a few inches of malleable snow fell. It was perfect snowman-making snow, or better yet, snowball-making snow. While it was still fresh I brushed off the backyard woodpile and replenished the wood rack inside the garage. In the winter I keep a stock of dry split wood there for stormy days when going outside to fetch fuel for the fireplace is too bitter a task. Before heading into the house, as my dog Charlotte was still sniffing about, I chugged across a pristine swath of snow to make a large heart shape. It wasn't perfect. From my upstairs window it looked balloon-ish, as if squeezed from a bubble pipe.

Snow Heart

A few days later there was another snowfall, a few more inches, and, in another fit of spontaneous artistry, I trudged along the heart-shaped path again. The wind blew and temperatures sank in the coming days, pulling the last of the leaves off of the beech trees in our area. These are always the most tenacious of our local trees, holding onto their coffee-tinted leaves long after all other trees are bare. The wind blew beech leaves into the heart shaped trough and, with a gentle contrast, the heart continued on, visible across the white field during gray days and moonlit nights.

Valentine’s Day arrived and my backyard theme lived on. A few days afterward we were inundated with successive snowfalls. We concentrated on keeping a small path clear between backdoor and driveway. Our lives shrunk as the severity of the season closed in on us, no more whimsical snow designs or snowmen or snowball fights. We spent a few weeks struggling with the basic business of life. The snow heart disappeared under a frozen mantle. Ice encrusted our roof and filled the pathways.


Charlotte

By mid-March the strong sun of spring began working on the layers of snow. A determined crowd of daffodils emerged under my dryer vent, satisfying and hopefully green. Bustling about upstairs one day, gathering up a basket of laundry, I glanced out from behind our insulated curtains. The snow heart returned, leafy outline intact, materializing from the thick cloak of winter.

Holding on. 

March 2014
Charlotte is a very old dog. I adopted her as a puppy. There was a notice in the paper about a young dog thrown from a car at the train station, a beagle.

A new resident in a strange town, a single mom with one child in college and the other starting in a new high school, I thought a dog for my younger son would be just right: a furry friend to ward off the loneliness of being the new kid at school and keep him company while he was home alone during my long commute. We had beagle experience. We knew beagles. We could do this. Only, she wasn't a beagle. When I went to interview and meet her, I knew she was something else. Her perfectly-lined eyes and fine bones spoke Border collie. Only her color patches of black and caramel brown on a white background looked beagle-ish. Her eyes sparkled with curiosity. Her ears were lovely and soft.


I took her home.

That was over fourteen years ago. She saw Trevor through high school and college and grad school. She loves us and we love her. She is a dirt road dog. We thought Charlotte would become Charley, but she is ever the girl; Charlotte she would stay. Nothing makes her happier than a hike in the woods with her people. Throughout the many roads and trails in our town she romped, circling ahead of us, coming back to see if we were okay, stopping to investigate smells and chase chipmunks, but never letting us out of her sight. She sported a merry, prancing walk.




Aside from occasional visits to a canine friend of hers down the road she never roamed, preferring to keep watch on our yard and driveway from a sunny vantage point at a corner of the house. When I remarried she celebrated as my bridesmaid, encircling and herding our small wedding party into the wide hay field we chose for our ceremony.

Bride and Bridesmaid

Now she is old, in her dotage. This winter was hard on her, the slippery paths and bitter wind. She has arthritis and weak back legs. You can feel delicate hipbones through the fur on her rump. Her eyes are fuzzy and she no longer alerts when you call her name. She groans modestly and hauls herself carefully up to standing. She walks stiffly, carefully. We make her poached chicken and broth and cheer her up the one step from our deck into the kitchen. We give her dog treats at the slightest hint she might be interested. We carry her down the stairs and, lately, up them as well. Now she spends her days on the soft bed we’ve placed near the baseboard heater. I worry every day I keep her here selfishly. I don’t want to let her go. I hold on.




Postscript: June 3, 2014

Letting go.

Charlotte fell on the kitchen floor on Memorial Day and couldn’t get herself up. She gave us the look. After months of carrying her up and down stairs, of not being able to sit down or wag her tail, it was her time.

She was the best dog I ever had – sweet, gentle, patient, loving, smart, happy, merry. Her schedule described my life for the last year or so, especially since last August when she became crippled with aging hips and legs. It was a brutal winter for her but she never showed signs of crankiness or resentment. Other dogs would get that low growl. They would look up at you with a warning in their eyes. Not Charlotte. She was, as we whispered to her when she drew her last breath, a very good girl. 

I remind myself of the lessons she taught me: to take every opportunity for a walk or a hike, to always be curious, to be patient, to nap in the sun when you can, to love your people unconditionally, and to live fully in the moment – the moment you are in right now.




Thursday, May 1, 2014

Searching for the Soul of My New Machine

10:27 AM, 1 May 2014

Here we go: A new machine, a new writing device. I hereby christen my new laptop. I bid goodbye to my older, failing computer. For practical, time-saving reasons I moved from pushing pens and pencils to using a keyboard to keep my journal about four months ago.

Still, pens and pencils beckon me. They pull me back to them with their prized portability and lack of malfunction and required learning curve. Rarely are there software updates or 2.1 versions of college-ruled notebooks or medium-point blue-ink pens. They don’t need internet connections and I’m not required to register online and find my way through a fourteen-step installation process to hold a tangible paper representation of my writing in hand. Yes, admittedly there are spelling and editing drawbacks. Do I sound like I’m trying to talk myself into this new-fangled machine-writing habit? I am trying to stick with it. I am trying to find the benefits to it. After all the time I spent meticulously transcribing old journals into a digital format you would think I would never look back.

Nostalgia grabs me. I like my stack of weathered notebooks, worn and crumpled from getting stuffed into backpacks, suitcases, and diaper bags, splashed with green tea and the occasional tear, doodled upon relentlessly and absentmindedly. When I open them there’s an exhale released from long ago. They aren't color-corrected with military margins. Instead, they carry a scent from another era, an older chapter of my life. There are cross-outs and little carets where I inserted afterthoughts and qualifiers. It is easy to surmise what kind of mood I was in and how tired I was by the attitude of my hand printing. I always printed. My script was, and still is, abominable and continues to suffer from dearth of practice. Even my signature is sloppy and unreadable. And then there’s blue ink, my favorite. No matter how crisp and clear and perfectly spaced my Word documents are, they will never provoke the satisfaction and gratification derived from watching fresh blue ink scratchings settle and dry on those faint blue college rules. As a lefthander, I always wrote from above, a necessary, contorted position to avoid dragging the side of my hand through wet ink. Nevertheless, I spent years of my life with a faint blue haze on the hammy side of my left pinky and fist, a handwriting tattoo of sorts.


This new machine is clever. The keyboard is comfortable and yielding. Transcription is a long and arduous process. I still need to cover ten more years of hand-written notebooks, a task I try not to think too deeply about as it will tip me into a bout of bone weariness. How will I get it all done? Is it really worth it? Distractions abound. I search for my focus and gird my determination. I hope - I long, to complete this process soon and get on with the fun of revision, of weaving all this life work together.   

Thursday, April 10, 2014

Quietness of Thought

10:02 AM, 10 April 2014

At last I enjoy a full day to myself. There is a long to-do list. I’m already plugging along, trying to optimize my alone time. I want to go to bed tonight satisfied after a full day. I need to take Charlotte out after I get these words down. It is sunny out and the temperature is predicted to get warm, up to the 60s or thereabout. I consider 60 a toasty temperature now. When I was in the basement earlier I looked at the bin I keep of winter accoutrements: gloves, scarves, mittens, hats. I briefly thought of performing my yearly task of cleaning them, whether in washer or by hand, and hanging all out to dry in the spring sun. I stopped myself. There might be a few additional frigid days in our future. Spring is very slow arriving this year.

Easter, my most dreaded holiday, is next week. I will maintain a solid and humble attitude, appreciating the return of the sun, emerging green, and awakening woods. To me this religious holiday is always written in blood. When I was forced to attend church as a little girl I found it scary and foreboding. I never incorporated or fully understood the whole “rise from the dead” metaphor. I couldn’t get past all the celebrated and glorified cruelty and torture. It frightened me and the indoctrination didn’t hold.

So, in lieu of all the strange, ritualistic ceremonies taking place in the so-called houses of worship, I hope to go out into the woods and hug a maple or oak tree, look for frogs and wild hepatica, and listen to peepers. Our great mother spins on her axis and rockets around a star. She tilts toward the light, warms her backside, and all of us – trees, furry woodland creatures, and even lowly poison ivy, scramble to survive. I will celebrate survival, especially after the cruelest of winters.

Yesterday, after a second pain injection to my cervical vertebrae, I returned home, pulled my go-to ice pack out of the freezer and, as instructed, lay down and iced the area, twenty minutes on, twenty minutes off. The intent was to let the medication pool around the affected area and perform its magic. I am motivated to obtain the greatest benefit from these treatments, and so, despite the to-do list: I behave. Under enforced rest I muddled through the outstanding Words with Friends games on my iPod, read the latest New Yorker, and another 30 or so pages of V.S. Naipaul’s Bend in the River. I looked up at the ceiling, watched the little spider making his meager living around my curtain rods, and gazed up through the skylight, admiring drifting contrails and the spurts of robins and finches flitting about the local treetops. I thought of a dozen things to write about and scribbled a bit in my notebook but felt guilty for raising my head. I came to a rest finally, not sleep but a quietness of thought – contemplative, pleasant, and restorative. I record and describe this now because it is a place I want to return to. I find it sometimes while traveling, gazing out a train or plane window. A reverie of sorts, it uplifts and serves to heal my spirits. 

Monday, March 31, 2014

Out Like a Lamb?

31 March 2014

I woke up early this morning to find snow on the overhead skylight. Depression doesn't even begin to describe the disheartening feeling I’m experiencing on this, the final day of March. I am struggling to keep afloat here and inexorably, guilt is starting to reenter my psyche. I feel guilty because I am not getting enough done towards my writing goals. Since I am not getting enough done there is a cloud of concern about my need to find something better and more productive to do. I need to be bringing in an income to contribute to this household. Bob carries all of the weight paying our recurrent bills. I am the hausfrau, stirring the pot and hanging the laundry on the line, clucking over dirt on the floor, and what I should cook for dinner. These things fritter and waste my precious time. Wasn't it just a week ago I was whining about how pain was standing between me and my life, my dreams?

Right now, as a new coating of white covers the deck and yard, as I don several layers of clothing to escort Charlotte up and down the icy deck stairs, my thoughts are dark. I long fervently for warmth and sun. I feel pent up and clogged with the stuffiness of the household air. I endured a mild headache most of the day yesterday, a headache of mysterious origin since allergies don’t seem to be a cause with this still-frozen weather, I enjoyed at least seven hours of uninterrupted sleep the night before, and not a whit of liquor passed my lips in the previous 48 hours. Bob thought it was the claustrophobic air trapped in the house for these prolonged and oppressive winter months. I agree with him and add a melancholic note: When you feel drab, when the world is drab – grey and damp and enclosed, the world can push in on you and corral your thoughts and feelings and sense of well-being. I am not much better today. The headache is gone, thank goodness. I got up this morning and rustled about, exercising vigorously after completing my now-elaborate pet care routine. Looking out the window and re-experiencing the pall of winter gloom isn't helping.

And so I create a list to propel myself forward. I set goals, small ones and large. I take steps to get out of these doldrums, this malaise. Even if my inclination is to crawl back under the covers and close myself off from the howl of wind around the eaves, if I plod along, ticking off one small task after another there might be progress. There will be progress. Someday spring will arrive and with it a renewed sense of optimism. Isn't this how we usually roll?


I went outside a few days ago and marveled over the patch of daffodils under my dryer vent. Their deep green blades were pushing through the thick crust of ice still covering the small planting bed on the protected side of my house. I grabbed my camera to record this small burst of hope. They aren't flowering yet and endure another layer of frozen snow as I write this. Surely they will win out over this cruel weather, and so must I. 

Monday, February 24, 2014

Pain

9:48 AM, 24 February 2014

It is Monday, not usually my favorite day of the week but always a day for renewed intention, a day to get back to the grind and reset my goals. For now I can simply duplicate my goals from last week. I lost last week. I gave it over to pain.

Now I stand in the center of my kitchen, taking advantage of the just-above-waistline height of the raised counter-top. Sitting at my desk became agony last week. I tried and tried and finally gave in to taking painkillers and doing whatever I could do on my feet or, alternatively, lying on the floor. I cried. I sobbed. I revisited depression. I am 58 years old. Is this it? Is this my decline, my slide into oblivion? I am to live with pain until I am no more? It is so distracting and, when it is acute, so controlling. When I experience stabbing knives down my lower back twanging some tight nauseating cord attached to the back of my leg, I can’t concentrate on pronouns and verbs, I can’t work on awkward sentences or craft my thoughts into paragraphs and essays. I spend my time thinking about and seeking relief, complaining, gasping, and wriggling around trying to find the one position, the perfect posture to release me from torture.


Willow on catnip: me on pain meds

Right now I am considering an ice pack for the back of my neck. They tell me again and again: my arm and shoulder pain derives from the multitude of problems in my neck vertebra. I find it difficult to accept since the pain in my shoulder is very immediate. It doesn't feel like it is “from” anywhere else. It blooms quite intensely and radiates out from behind my shoulder blade to the outside of my shoulder and on down the back of my arm, sometimes tingling as if asleep, and sometimes burning white hot and relentless, stealing my breath. I am not educated in the human nervous system, only in the education my personal nervous system is providing. I've tolerated neck pain for years. It is the lasting legacy of six years at a desk with a phone squeezed between ear and shoulder. The pre-headset days are the gift that keeps on giving. Now they tell me my neck trouble is spreading, traveling about my body so I won’t forget those years spent as an office manager trying to keep my family together, jamming a phone against my ear and affecting my saccharin charm to all those wealthy investors.

I must muscle through this. There is too much I need to achieve before I curl up. I've barely begun. Funny how pain can be a mind game. It is so attention grabbing, so all-consuming. Pain is not reading my to-do list. If it is, it is laughing hysterically and maniacally and rubbing its hands together. The to-do list is hovering about in my dreams of late, following me around like a faithful dog. It isn't leaving me. Deadlines loom before me, some self-imposed, others gently requested by people relying on me.

I embrace drugs. This was an emotional decision that felt like a moral failure last week. I want my brain to be clear and firing on all cylinders. But, the meds take the edge off. They permit movement and a degree of relief. They collect a toll as well. My mind is fuzzy and imprecise. The to-do list feels more suggestion than rule. I don’t care as much. My writing work is hesitant and less directed. After I go to the surgeon tomorrow I will try to cut the amount down and keep to a low-but-steady dose. I understand in theory this will address the undesirable roller-coaster, the peaks and valleys of chronic agony. I am reluctant. I’d rather settle into something endurable, a life where I've got all my faculties working to their fullest, not cushioned under the pillow-y softness of drug-induced narcotic reprieve.


I managed to write this today though, huh? I will draw satisfaction from this, already a victory over the lost time of last week. 

Monday, January 20, 2014

25, 26, and 27 March 1999, Operation Smile, Final Entry

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.”