Prologue
My memory, small and landlocked like the South American country where it momentarily rests, flits from image to image, incoherent, like the swarms of dengue-carrying mosquitoes that descended there one sticky summer in the late 1990s. The mosquitoes were a national offense, their absence one of the few proud legacies of thirty-five years of dictatorship. Alfred Stroessner had eliminated malaria-carrying mosquitoes as ruthlessly as he had eliminated political foes. And now they were back carrying another devastating disease, another proof for some people that life had been safer under a strong-armed leader.
The new wave of mosquitoes came as two separate armies, the high-flyers that bit around the face and neck and arms, and the low-flyers favoring legs, ankles, and the bottoms of feet, a frequent target at night for people accustomed to sleeping without screens, windows open to the cooler evening breezes, or on mats stretched out along a balcony. The low-flyers (or was it the high?) brought dengue, “bone-break fever,” sometimes mild, sometimes fatal. The mildest cases showed up as a rash under the skin, some fever, and lassitude. The more severe cases caused loss of appetite and extreme weight loss, fever so high and prolonged that people thought their bones would break, and a deep depression that could persist for months. More lived than died during the outbreak, but the bad news for dengue survivors was that another bite from a dengue-carrying mosquito, even years later, would result in hemorrhagic (bleeding) dengue, almost always fatal.
I must remind my now-grown son about this piece of his medical history, just in case. He and I might still bleed out from random bites in Paraguay. Something else to carry around with the astounding variety of intestinal flora he and his younger brother picked up from many different water supplies, agricultural methods, and sanitation practices. My children are a petri dish culture that would alarm a lab technician unaccustomed to tropical fecal samples. Just as a candid cross-cut of their emotional landscape would alarm a psychologist untutored in the chameleon-like qualities of a mind without a true home.
Asunción, August 1996
White stucco wall inches away, softened with the light of early morning. Where am I?
Stillness touched by birdsong. Muted rustling of the day’s work beginning somewhere below. The clunk of lonely tires bumping over uneven pavement.
What a beautiful birdcall. I wonder what it is.
Something tickles the edge of my awareness. Blinking into wakefulness, I remember Kenny coming into bed with Jim and me in the night, his almost-four-year-old body usurping all the space that had comfortably held my husband and me. I had ceded the territory and headed to Kenny’s bed.
Yes, but where am I?
Another blink and it hits me. I am in Paraguay. The apartment hotel Westfalinhaus.
I am momentarily consumed by contentment thinking about the hotel, so much cozier than the one where we first landed.
I blink again, staring at the wall in front of me. Paraguay is home now. I can’t go back.
My mind judders in distress. Suddenly sorrow, which has been uncoiling silently within me for weeks, strikes harder than the wall in front of me, venomous, unstoppable. Tears stream down onto the clean white sheets, blurring the sunshine. Spare pine bedposts stand silent sentinel.
Sarah. I left her. How could I leave Sarah?
Burke, Virginia, October 1995, ten months before arriving in Paraguay
The original diagnosis from her HMO must have been “single-childless woman in her thirties.”
Why else would the doctors have ignored my sister Sarah’s symptoms for eighteen months, sending her home without ordering tests, without physically probing the increasingly painful area on her right lower back? Over and over again, the same symptoms, just an increasingly unbearable uptick in pain. Only when she could not stand upright to return to work, despite a five-day supply of painkillers, did Sarah receive a physical exam.
The doctor ran disinterested latex-tipped fingers over Sarah’s lower back. Paused. Repeated. Paused again. Lingered.
“Please disrobe, and put this on, open to the front, and lay back on the table. I’ll be right back.”
Sarah put on the flimsy paper gown, and waited in the cold room, listening to the faint buzz of fluorescent light.
The doctor returned. Her fingers ranged slowly over Sarah’s stomach, down to her pelvis, out to the hips, up to the rib cage, around and back down the sides of the spine. Silence lengthened into a void.
“Why did you wait so long to seek treatment?”
…
Unable to work and pay her rent, Sarah moved into our home in the D.C. suburbs, just a few weeks after her diagnosis of renal cell cancer. She cried her second day with us, not in self-pity, but in shame at what she saw as her intrusion into our family life.
Renal cell cancer had a very low survival rate, but Sarah had been accepted into promising clinical trials at the National Institutes of Health (NIH). The first step would be surgery in November to remove the large tumor spreading throughout her abdomen.
Sarah loved Halloween, the zany adult dress-up and go to Georgetown kind of Halloween, but that year she was content to stay home, helping her nephews Kenny and Andrew carve pumpkins, and passing out candy with me while my husband Jim took the boys trick-or-treating. Sarah’s pain level was high, despite the now steady doses of medication.
What a gift she was. The kids loved spending time with her, and she and I finally got to know each other. Sometimes through words, but words could mislead, so mostly by reading all the other cues, as we had learned as children. Other than this common nonverbal language, we might have been raised in different families. By the time Sarah was born, five years after me, the downward spiral was taking on its own velocity. We grew up in a fracturing household with two other siblings, Rebecca, the firstborn, followed by me, then John, and then Sarah. Somehow the camaraderie amongst siblings, common in the dysfunctional families of literature, did not exist for the four of us. It felt to me as if each of us was alone. As I see it, at best, we shared our place in the shadows as witnesses to our parents’ drama; at worst we were enemies in the war for attention, and in the equally intense war to avoid attention in certain circumstances. I wonder if Rebecca, John, and Sarah would have described this the same way.
Sarah’s surgery lasted fourteen hours, the doctors snipping and checking until the tissue samples came back cancer-free. When it was over, Sarah was missing entire organs, and significant parts of others. Doctors were amazed that a cancer left unchecked so long had not yet touched her other kidney, nor had it metastasized to lungs, brain, or bones.
Six weeks after surgery, doctors were further confounded when they learned why Sarah had not responded to messages on our answering machine: she was skiing with us in West Virginia. They thought she would be home still recovering, especially since the latest CT scan showed small cancerous spots on her lungs.
She needed to begin the experimental interleukin treatment, which had a 25 percent success rate, immediately. The therapy would consist of three ten-day courses of intravenous treatment, inpatient at NIH. The most troublesome side effect was psychosis, but that was temporary, and not all patients experienced it.
Asunción, August 1996
I blinked again and my mind returned to the Westfalinhaus, my body still facing the white stucco wall. I shook my head to clear it of thoughts of Sarah.
We had been in Paraguay for six weeks, Jim assigned as Public Affairs Officer to the U.S. Embassy. We spent our first week at the Gran Hotel, a dank and dark place, gelid at the height of Paraguayan winter. When it became clear that our permanent housing was nowhere near ready, we were transferred to the spacious, warm, and welcoming Westfalinhaus.
Now the chill of July had given way to the Santa Ana winds, heralding the arrival of spring. No wonder this weather system was rumored to cause insanity, the winds warm and abrasive, leaving everybody sandpapery with irritation. Thankfully it passed quickly, yielding in turn to the pleasant heat of August.
Life had settled into a temporary routine. Breakfast for all of us at the Westfalinhaus common table, an abundant German-style buffet combined with Paraguay’s lush tropic fruits. Because our car had not yet cleared customs, I paid a retired embassy driver to ferry me around Asunción. The American School of Asunción (ASA) had no bus service, so he drove Andrew to his fourth-grade classes, dropping Kenny afterward at preschool. This morning, he would take me grocery shopping. This was still a major undertaking, as I deciphered Paraguayan brands, learned the names for cuts of meat, and navigated local etiquette for standing in checkout lines. Later in the morning, two potential housekeepers were coming by the Westfalinhaus for interviews. Hopefully I would find someone suitable, and still have time for some weight lifting before picking the boys up from school. That evening, Jim and I were off to ASA for the school board elections. Somehow, I had ended up on the slate of nominees, but I wasn’t worried. Nobody knew me, so the chances of getting elected were nil.
We had arrived in Asunción seven years after the fall of the dictatorship. Stroessner had ruled Paraguay for thirty-five years, enriching himself at the expense of his country. Later in his regime, the strong-arm tactics of the early years were no longer necessary, the threat of them enough to keep any opposition in check. And Stroessner wisely shared the bounty of corruption, so that the wealthy, land-owning class of Paraguay had plenty of reason to keep their mouths shut. A dubious legacy: Paraguay was very good at corruption. And conspiracy theories.
The American School educated Paraguay’s elite, a cross-spectrum from both leading political parties. Many had ties that could be traced to the dictatorship. Everyone had a photo taken with Stroessner.
That evening, the ASA parking lot was jammed with luxury vehicles. In the warm evening air, people milled about under the mango trees in the central courtyard. Most were speaking Spanish; all of them seemed to know each other. Jim and I made our way through the crowd of strangers, and found seats inside the multipurpose room. Large fans and open windows did little to cool the overheated room.
I sat back to take in the scene. I already knew that 95 percent of the school population was from wealthy local families. These students would attend school together from pre-K through high school graduation. They would marry one another, go into politics or business together. Many of them had family ties, through a complicated network of legitimate marriages, and illicit liaisons.
American families did not slip easily into this milieu. Less than 5 percent of the school, they often felt powerless. But for Paraguayans, they were all-powerful. Americans held five out of nine voting positions on the Board, plus the nonvoting U.S. Ambassador’s representative. All school administrators were American, and teachers in the English program needed U.S. certification. And no Paraguayan ever forgot that the U.S. dominated the world, militarily, culturally, and economically. Americans tended to take this as their birthright, and rarely paused to consider its impact on citizens of a small, relatively unknown country.
The meeting started calmly enough, with the usual reports from administrators and Board chairs, but after the Treasurer’s report, all hell broke loose. A board member grabbed the mike and castigated the treasurer, strutting about, pointing at spreadsheets projected on the overhead screen, furiously marking on a flipchart. The treasurer, a tall, dark-haired man, clutched one hand to his head, the other fending off the torrent of abuse with a feeble wave. Sweat soaked the armpits of his shirt, despite its open neck and rolled-up sleeves.
Jim and stared at each other in astonishment. We didn’t know this side of Paraguay. I decided that if I ever got on a dais to speak, which I wouldn’t, I would be ready for these kinds of attacks.
The woman next to us whispered that the treasurer up on stage was the presumptive president of the incoming Board.
Ha! I thought. That made two of us who weren’t getting elected tonight.
As the floor opened for questions, the scene became even more chaotic. The language switched from English to Spanish, with some Guarani. I could follow with difficulty, but several Americans looked as confused as many Paraguayans had ten minutes earlier. The administrator assigned to translate couldn’t get a word in edgewise. Some parents leapt to the treasurer’s defense; others drilled down on his attacker’s opening shots.
I was riveted, the dynamics and crosscurrents in the room a window into a culture that, in my brief experience, had been unfailingly polite and conflict-averse. Board meetings would be challenging. Too bad I wouldn’t get elected.
But I was. Only five Americans had run for the five open positions reserved for us by statute. Among the other eight people elected that night, the Baptist pastor was the only familiar face. Most surprising, to me anyway, was the re-election of the treasurer, soon-to-be Board President.
…
When we finally moved into our permanent quarters in September, Andrew and Kenny had a lively argument about who got which bedroom. This was an argument that Andrew was to win every time we moved. But that week they were in agreement that when Sarah finished her latest treatment, and came to live with us in Paraguay, she should have the middle bedroom overlooking the balcony. She would enjoy sitting out there with her morning coffee, gazing over the tiled roofs at the endless reach of Paraguayan sky.
I smiled and joined in, even as that early morning grief at the Westfalinhaus stayed coiled within me. Planning for Aunt Sarah had become part of our own learning to love Paraguay. How she would enjoy this restaurant for Sunday lunch. How she would have to try dancing with a bottle on her head. How her sun-seeking limbs would soak up the sultry heat. How the strains of the Paraguayan harp late in the relative cool of an evening, shared with a group of friends with nothing better to do than talk, would nestle in her very soul.
Not a single day of my life in Paraguay passed that was not shared with Sarah, impelled by her.
Burke, Virginia, March 1996, four months after Sarah’s surgery
A soft breeze blew through the windows, which were finally open to the first true spring day in northern Virginia. Winter could still be back for one more round.
Nine-year-old Andrew had just raced out the door for soccer practice, with Jim in close pursuit. Kenny puttered happily in front of the dishwasher, meticulously rearranging the flatware basket, an aura of total concentration radiating from his body, which was losing the soft curves and folds of toddler-hood. I stood at the sink beside him, finishing up the hand washing and glorying in the smell and feel of the air.
Sarah waltzed into the kitchen with a beach towel draped over her pale freckled body. She struck a vamp pose, pursing her lips and goggling her eyebrows at me, more Marx Brother than Marilyn Monroe. “This weather’s glorious. I’m going outside to sunbathe. After all, not every woman sports a built-in peace sign.”
She whipped off the towel to expose her bikini-clad torso, bisected and subdivided with a still newly pink scar running from sternum to pelvis, with two side roads from belly button to hip bones. She was indeed a walking peace symbol. Kenny chortled at her delight, and she swooped him up for a sunscreen-greasy hug. Two strawberry blonde heads, the same sharp intelligence and mischievousness radiating from blue eyes. They were a mutual admiration society.
Sarah’s delight infected me as well, and I joined in the laughter, amazed yet again by the joy my baby sister brought into our home. She had suffered terribly from psychosis during the first ten-day round of interleukin treatment, and her sunny disposition had just reemerged. Soon she would willingly undergo that hell once again.
Asunción, September 1996
I loved my first school board meeting. We were a bunch of lab rats, subjected to different stimuli: personality and background and nationality, age and gender and profession. As a newcomer to the country, and the school, and the board, I observed closely that day and asked only one question. But my mind woke up.
Since refusing my commission to the Foreign Service ten years before, I had been out of the workforce. I was a steady volunteer in the appropriate ways, writing the Sao Paulo Consulate newsletter, serving with the Women’s Association at the embassy in Guatemala, helping organize the charity art fair, editing the PTA newsletter at Bailey’s Elementary School, giving logistical support (orange slices and photocopies) to Andrew’s soccer team. These activities provided little grist for my analytical brain, and put me largely in the company of other nonworking people. We shared the common coin of diapers, lost sleep, Jane Brody health food dinners liberally laced with last-minute McDonald’s, and intense competition over whose child got the first tooth. Despite the fact that many of us had more than one advanced college degree.
And we were all women. In suburban Virginia, for weeks at a time, the only men I talked to were Jim and the aged school bus driver. Most of those conversations were about my children.
The ASA Board wrestled with serious policy issues, complicated by a multicultural, multilingual environment. I was the only unemployed person. And one of only three women. For some reason, this did not daunt me at all. Any more than did the extreme wealth of several board members, or their ties to powerful institutions within Paraguay. They were all just people to me. In other words, they were all extremely interesting.
I was sliding into Paraguay like a spoon into soup.
Burke, Virginia, April – June, 1996
After Sarah started treatment, I had become point-person for the multiple phone calls, designated driver to NIH when Sarah could not drive herself, and cleaner of the stents dangling from her body. A rag-tag army of friends, relatives and random acquaintances supplied meals, childcare, financial support for Sarah, and prayer. Kenny often rode with me to NIH, tucked into his car seat, watching the traffic hem us in on the Beltway. While I visited with Sarah in the hospital, Kenny spent the day with my friend and her toddler in Bethesda, or in the daycare center at NIH, where he shared the space with the children undergoing experimental treatments.
More than once, when I got caught in traffic on the trip back home, Andrew had to be rescued from the after-school bus by his godmother Dinah. In those pre-cell phone days, this required exiting the Beltway, frantically searching for quarters, and hoping against hope that my mental file of phone numbers was in good working order. With luck, Dinah would be home.
Jim never questioned the overtaking of our lives by Sarah’s illness. He just pitched in. Our Foreign Service life had programmed us to unite in the face of crisis. In fact, we were past-due for a uniting crisis, since more than three years had passed since the last one, which was an extended humdinger intertwined with our move from Guatemala to Washington, and involved obstetrician-ordered bed rest, childbirth, first-time home ownership, a new workaholic boss for Jim, and clearing out my recently deceased mother’s house. Since our moving crisis, Jim and I had drifted into a routine of cranky coexistence, both of us feeling much put upon by whatever the other was or was not doing, or saying, or feeling. Sarah galvanized us with a common marital cause. Jim and I worked together to maintain a family routine that met Sarah’s needs, as well as Andrew’s and Kenny’s.
During Sarah’s bouts of overnight stays at NIH, she loved to be read aloud to, especially childhood favorites like The Wind in the Willows. Our brother John was particularly good at this. I walked into her hospital room one day while he was reading. Sarah, with tubes snaking out of various parts of her body and bandages covering others, oozed a cat-like contentment as she glanced at me and asked, “Isn’t this the best?”
She had been longing to be read a poem called “Reflections on a Gift of Watermelon Pickle.” The family copy of an anthology with the same title had disappeared, along with a lot of other things, after our mother’s death. I never found the poem in that pre-Google search era, but “watermelon pickle” became a catch-phrase between Sarah and me.
When Sarah wasn’t hospitalized, she volunteered at a Presbyterian church in our neighborhood, painting the pre-school classrooms, doing odd projects, but refusing to attend services there, or at any other church. She trained as a call-in counselor on a crisis hotline, scheduling her hours around the exigencies of cancer treatment. She attended Andrew’s soccer games. She stuck jelly beans up her nose on Easter morning, to the helpless delight of both her nephews. She was a one-woman advertising campaign for Starbucks, extolling its products for efficacy in countering the constipating effects of narcotic pain medication.
But cancer is a solitary journey. On the night at NIH when Sarah simply and without complaint said, “I feel so alone,” I had nothing to offer her. I went home and did the one thing I did not know how to do, and did not believe in. I prayed. How? With what thoughts? What words? I don’t know, and didn’t know at the time. I was only desperate with love for my sister, for her to be free of that loneliness.
Soft, glowing light, warmth and power, engulfing and enfolding. Sarah. Curled up. In a shell? In an ear? In a womb? Yes, yes, and yes. All of those and beyond all those. Embraced. Loved. Cared for. And I? A part of the wholeness, even as I was witness to it. Sarah was not alone. Sarah had been healed.
I felt so light. For the first time in my entire life, I knew that it did not all depend on me. It wasn’t my fault, and it wasn’t my responsibility. Rather than diminishing my care for Sarah, this sense embraced it. And made it weightless. That Light needed me to be doing what I was doing. Loving my sister. Even as she gave me so much more in return.
…
There was never any question that I would leave for Paraguay with Jim and the boys, regardless of Sarah’s health. The tight family unit that Sarah had entered nine months before functioned according to some pretty strict rules. Unspoken was that needs of the Foreign Service came first. For Jim to back out of this assignment would leave a staffing gap in Asunción and jeopardize his own career. Spoken was our self-imposed rule to always arrive at the start of a new assignment and depart at the end as a family, experiencing those frightening, intense, exhilarating, confusing, grief- and anger-filled moments together; cementing Andrew and Kenny’s sense of family as a constant in an ever-changing world.
Asunción, September 1996
The call came to the Marine Guard at the embassy one Saturday, less than three months since our chilly July arrival, and a week after we had moved into our house. Sarah had collapsed walking on the beach in Duck, North Carolina. She was en route by ambulance to NIH, accompanied by our older sister, Rebecca.
We sprang into action. Jim called his embassy HR assistant at home, asking her to book flights for Monday morning for me, Kenny, and Andrew. I called the elementary principal at home, requesting excused absence for Andrew. She explained that she could not bend attendance rules for board members. But, since Jim needed a few days to sort things in his office, she suggested that Andrew travel later with him, using the time to attend school and get advance assignments for his homework. The HR assistant called back to say she could book flights for all of us, but the bereavement allowance only covered me, as a same generation blood relative, and Kenny, who at three years old was dependent on me as his primary caregiver. We would have to pay for Jim’s and Andrew’s tickets. But we were all going, regardless of cost.
A minor snag was a large reception that we were hosting at our home later that week. It was in honor of a visiting delegation from the U.S., so it could not be rescheduled or canceled. I looked around the house. Unopened shipping boxes littered the front hall. The walls were bare of our artwork, the shelves held no books or personal mementos. Furniture that had been shoved aside during extensive maintenance work had not been rearranged. Out on the patio, sturdy air freight boxes had been turned into an elaborate fort/tunnel.
After a flurry of phone calls, the Embassy General Services Officer agreed to send a crew Monday morning to move the boxes upstairs and shove the furniture around. The walls and shelves would remain empty. Jim’s Assistant Public Affairs Officer willingly stepped up to host. This is the only time we have entertained official guests without at least one of us present.
I placed one last call, this one to friends who lived near NIH. They opened their home to us for as long as was needed.
When Kenny and I flew out two days later, several other members of the Baptist congregation came to the airport to bid us farewell. We retraced in reverse our arrival journey of three months ago, Kenny behaving like an angel this time on the multiple flights, sleeping at the right times, staying awake when it mattered, keeping his fidgeting to a minimum. I sat in the surprisingly quiet cabin, hoping we would arrive in time.
…
Sarah was in and out of lucidity, her failing kidney sending toxins to her brain. My visits with her were short. We had said our good-byes three months before. Kenny visited only once, and collapsed in hysterics as soon as he walked into the room. He never looked at Sarah, but stared fixedly at the ceiling beyond her, terrified by whatever he saw.
The day after our arrival at NIH, a young doctor from the interleukin research team caught up with me in the hallway outside Sarah’s room.
“You know, NIH is where Sarah came to fight. The fight’s over now, but it may be hard for her to let go as long as she stays here. I can recommend hospice for you.”
I accepted her offer, and thanked her for all she had done for Sarah.
She looked at me oddly. “In the end, we didn’t do a stinking thing for your sister. It was the surgeons who bought her some time. I’m so sorry. She’s a beautiful person.” Her bitterness stunned me.
Just then we saw the hospital chaplain beelining toward us, and each of us escaped in a different direction. I’m not sure what impelled the doctor, but my fondness for religion was still confined to a small church in Paraguay. And in previous encounters, the chaplain had only confirmed my suspicions of religion in general.
Andrew and Jim went straight to the hospital when they arrived in Washington. Andrew was a child who guarded his emotions closely, and he showed no visible reaction to Sarah’s new remoteness.
The next day Sarah was transferred to hospice. I rode with her in the ambulance, holding her hand. We were mostly silent, although once she asked me to stop staring at her. The hospice was a low-rise building set on a side street in Arlington. Sarah was gently transferred to a large, sunny room overlooking the gardens that surrounded the hospice. The receiving nurse completed the intake form with me, while Sarah floated on a cloud of narcotics and bodily poisons in the bed next to us.
“What is your sister’s age?”
“She turns thirty-seven in one week.”
“Is there a family history of cancer?”
“None that we know of, but we don’t have complete records on our paternal grandmother.”
“Next of kin?”
“Our brother John is her executor.”
Etcetera, etcetera. Until suddenly, in response to the question “What was the date of onset of her cancer?” Sarah shot up in the hospice bed and intoned clearly, “April 14, 1989,” before collapsing again into semi-consciousness.
April 14, 1989. The day our mother died.
Sarah’s cancer was carried on a gene that remains dormant for the lifetime of most people, triggered only by extended exposure to an environmental toxin, or by a major life trauma. Apparently, in Sarah’s mind, Mom’s death was the trigger.
The death that came too soon, so unexpectedly. Before she and Sarah could heal together.
Early that same evening, I kissed Sarah goodnight. She opened her eyes and said, “I love you.”
John stayed by her bed that night. He called at 1:30 a.m.
Sarah had died. Seven and a half years after our mother. To the hour, twenty-one years after our father.
I stood unseeing in our friends’ kitchen for minutes before returning to my bed on the living room sofa. I struggled to recapture the vision that had come to me in prayer all those months ago. Giving up, and feeling completely awake, I fell deeply asleep. In some hour before dawn, something jolted me back into consciousness. I lay blinking, disoriented once again, or still, about where I was in the world. Out of the darkness I heard Sarah’s voice, filled with laughter and lightness.
“Watermelon Pickle! Watermelon Pickle! Watermelon Pickle!”
I checked to see if I had jelly beans up my nose.