The lights have come on, the night is falling, life changes its face.
One way or another I have to keep on living.
My soul burns like a hand, physically.
I’m on the road of all men and they bump against me.
~ Fernando Pessoa
My hotel is as I pictured it, simple with all the comforts: nice bed, private bath (with bidet and tub), phone, desk, and best: terrace and wide-angle view of the red-tiled roofs of the vast city of Lisbon. The light of late afternoon is soft-focus and otherworldly. At night circus/calliope rhythms reach my windows from a courtyard below, where a large group of teenagers practice a line dance: march, grapevine, side-step, swing your partner, singing along in Portuguese.
Leaving in the morning on foot from the inn’s hilltop perch near Miradouro do Monte means following a winding path downhill through Graça and Alfama’s narrow neighborhood streets. Looking into doorways, walking the cobbled alleys, I lose track of how to retrace my steps, and can only go forward, on a self-paced stroll with no destination. Glimpses of Tagus River provide orientation and I head toward the water to gain my bearings. My new beaded sandals work well on the stones: stable ground. Knee-length skirt a comfort, glad to have sweater on turns into sudden gusts. I walk along the wide riverfront boulevard toward Municipal Plaza, and now I appreciate the comfort of being where tourists are expected. The pedestrian shopping street, Rua Agosto, leads to Rossio Plaza and a stop for cafe con natas at a sidewalk cafe for people watching.
I sit among street musicians, beggars, tourists, and artists. Here I am, author of Silvie’s Life, story of the life and death of my baby girl, now a book adopted for courses on end-of-life ethics and the right to die, translated into Portuguese. My publisher has invited me to speak at four venues in Portugal, and agreed to pay my flight and three nights hotel but I have no cheque in hand yet, and so I worry a little about everything.
I observe the Human Statue at work nearby his collection jar, standing on a high box, white garb draped at length so he appears extra tall, in white face, white hands, cloth wrapped like gauze, facial expression of a sad clown. A crowd gathers, awaiting his act. But the act is simply this: to stand perfectly still, be like Pessoa, no one, empty, a blank canvas on whom the observer can toss a personality, empty so perhaps a soul can appear.
At the corner: a mysterious figure seated on a doorstep: Is he wearing a mask? What does it signify? What does he mean for us to make of it, to think?
A closer look reveals that it is the man’s face, his actual face! Visible purple and red tumors, bursting vessels twice as big as his face, grow there, obscuring his humanity. Attempting to understand what I’m seeing, I catch his eye, barely detectible amidst the raw, red clay of his face.
He has eyes! He’s human!
Not soulless like the white-draped statue, but fully present, and stricken by this disease, his fate, which renders him a beggar. Who could love such a being? I do, I love him; the eye connects his humanity to mine. I drop all my coins and bills in his upturned palm then join a stream of others passing by him without stopping.
Later, I describe him to my doctor hosts and learn it’s true, there’s nothing medicine can do for his particular affliction. The society of neonatologists wants to know why this is so: why do some newborns arrive with anomalias – defects, predispositions, imbalances – that will render their lives miserable or short, or both?
Death is everyone’s fate, but the whims and will of expected natural order include this percentage of chaos and extremes at the edges of commonness.
Doctors do not respond with the “why” of philosophy, literature, or religion; they face off anomalies with science, analyze statistics for where and why there arise clusters of experience, use microscopes to examine close-up the details of the misshaped kidney, trace back in sonograms to which prenatal period initiates the “wrong turn,” present findings in PowerPoint in darkened hotel conference rooms (as outside the sun blazes, wind pushes air, waves pound the rocky Viana do Castelo coast). The audience takes notes. Where can the doctor intervene to prevent this, or if not, to treat it, to right the wrong? Research is assessed, conclusions offered: these are the possibilities; this is what we might be able to control. The rest – what is out of control – is not the subject of these meetings.
I’m introduced into the conversation to tell my story. The title of my memoir has been translated as Estar Grávida É Estar de Esperanças: “Being pregnant is called expecting,” the first sentence of Silvie’s Life. I read from a chapter set in the Neonatal Intensive Care Unit (NICU), a place I call “God out of control,” and my book says, “This is not supposed to happen.”
My daughter’s case was extreme. After ten days of tests, trauma, and assessment, her doctors concluded she had suffered severe brain damage and that death was “her best hope.” Our task as parents became how to allow for this within the boundaries of law, morality, our deep love for her, and our pointless wish for her to come to life and thrive.
“We needed an explanation. No one could explain it,” I read.
Does the distinguished lady doctor wearing the cross necklace cringe when I call God out of control? Silvie’s Life wonders what kind of faith can allow for belief in a God who designs anomalias, or, if not designs them, permits them to exist?
Belief that suggests this is part of our lesson here?
Imperfection.
Only God is perfect? – and maybe even God is still learning.
#
The churches of Portugal are fortresses, walls three feet thick, interiors a kind of hubris, prideful reaching toward some perceived, conferred power – priests’ throne-like seats, bishops’ tombs, velvet robes, worship-me rituals. I feel both awe and cynicism inside these monuments to power.
The University of Coimbra’s grand plaza overlooks the city and river, and to step inside the ancient library requires an appointment. My group enters the temperature-controlled, sacred space with its ladders to high shelves, books in cages, grand conformity of spines and colors, grand depository of knowledge on medicine, law, physics, mathematics, the arts. Climbing through the buildings, the steps are unevenly sunken and slippery from thousands of footprints, weight of centuries; I can feel my fleeting presence and my permanent mark as well.
#
At Cafe Brasileira in Lisbon, Portugal’s most famous poet, Fernando Pessoa, is honored in the form of a bronze statue of a man in a hat and suit seated at a bronze outdoor café table, with an empty seat beside him where everyone who passes feels compelled to sit and pose for photos. I regard this parade: the traveler observes, the writer records these observations, the ordinary person wants her picture taken with Pessoa, and I hand my camera to a café neighbor, gesturing the shutter click as we don’t speak the same language.
Then I enter the café and head toward the back to watch all the comings and goings. All is chatter, animated, relaxed, nothing going on that doesn’t happen here on any given afternoon, when I see four men enter through the front doorway; one pushes the other, who returns a punch to the shoulder, which causes the first one to stumble then retaliate. Portuguese is tossed in the air, some insult or threat, then the four go at it, a regular brouhaha, and the patrons shout, stand up from their seats (myself among them), as the tinkle of breaking glass is heard – the mirror at the entrance? glass in the doors? port glasses at tables? A roar goes up, the waiters shout, one hurls a bottle at them, the bartender is on the phone to Policia as is the fat lady on her cell.
Outside, there’s a row of sidewalk cafés full of people who leap up shouting as the men “take it outside,” and proceed with the fight down the block.
Inside, the café settles into an excited bustle – Ah, how the energy of the afternoon can change, the moment of danger reinvigorates the ordinary; emotional tenor shifts.
We’ve just dodged “what could have happened” (one pulls a gun, or the tumble falls in my direction; I am, after all, trapped in the back of the café, the fight at its entrance; we were all forced to witness and wait to see where danger might strike, be prepared to defend our space and lives). Everyone is shaking their heads, reliving excitement, speculating, dismissing the men as ruffians, laughing about it now; fear gone and replaced with some new elation that coffee and wine can’t offer. Only the adrenalin of fear gives this spark.
#
At my hotel I overhear the clerk, Jose Manuel, describing his “problem child.” Later, we talk to each other and I show him my book: “This is why I’m here.” (He speaks some English; I employ my little Portuguese.) Soon, he is pulling pictures from his wallet, one of his son now at age five, and the dreaded NICU shot with the newborn attached to all the tubes and wearing the too-familiar cap and blanket with the same pink and turquoise stripes used in the States.
I gulp. “Yes, my baby looked like this. But listen, her situation was extreme. She didn’t live.”
His baby, his boy, lives, and his challenges will be ongoing (I don’t diagnose but it sounds like autism, or obsessive-compulsive disorder; Jose Manuel says hyperactive). He and his wife disagree about how to respond, and I worry for their marriage; I’ve been through all this, death and divorce, and feel like I’m on the other side. I have Dale, my strapping lad, and many blessings: good work, great health, many communities.
I point to Teresa Botelho’s name in the preface to Estar Grávida É Estar de Esperanças, “Maybe she can help you; she works with these children and families.”
Jose Manuel has no faith in psychologists, he says, he doesn’t read books, but accepts my gift of the book, maybe for his wife.
#
On Monday morning I’m scheduled to tour the public hospital with Teresa Botelho, Maria do Ceu Machado, who wrote the other preface, and Alexandra Dias, my translator. Dr. Machado heads the Department of Pediatrics and Neonatology; Dr. Botelho leads the psychology team; Dr. Dias is a respected pediatrician.
Two young psychologists-in-training accompany us as we visit the children’s library and play room, staff offices, wards, and intensive care. We pass through waiting rooms for day service appointments, noisy with hordes of the needy, all races.
It is a squelching hot day and the hospital is not an air-conditioned place; the air is stifling with the smell of bodies, illness, and fear. On the wards, there is the smell of bleach and disinfectants; in the cafeteria, hospital food. My hosts, used to the smells, the air, the sight of the needy hordes, walk past as if guiding me through a cathedral or museum, casually (kindly, respectfully) pointing out children with pneumonia, those with long-term care needs, one with possible lymphoma or is it edema that will respond to medication given one more day?
All is well, tudo bem, I’m in stride, okay, until I’m invited in, inside, in closer, to see the newborns in their cubicles. Alone in a blanketed cubby, there’s Matilda, teeny, bruised, connected by wires, holding on by a thread, alive. Breathing!
I bend close to peer inside, a spectator, and feel ashamed for looking, for being on tour. Gulps of emotion are swallowed then rise like air as I cross the room to meet the young Portuguese mother hovering lovingly over her perfectly beautiful baby boy. He is so so small, desperately yet calmly attempting to live with his intricate hands and complex brain waves, internal organs striving to do their work of coming into life and sustaining life before he is fully formed and ready. He’s been here three months so far. This mother has been here, too, in this darkened room with the busy nurses, doctors, and monitors, in love with this new being, faithfully conjuring hopeful thoughts.
This is when I start to cry, seeing that young mother. Looking into the more dire condition of the fist-sized African preemie, grasping a hand in camaraderie with the stoic, broad mother, I mumble, “Compreendo, I understand.” I want to offer hopeful prayers, can only extend my empathy.
As we exit, a deep well of old feelings engulfs me as I fall, weeping, down the well.
My guides seem surprised and I am, too.
“It’s been 18 years, I didn’t expect to feel this way, I’m sorry.”
“You haven’t been in a NICU since?”
“No.”
Why would I?
I ran as far from the place as I could get, avoided all thoughts of this becoming my life’s work. Yet I wrote Silvie’s Life, and attention was being paid to her story, again, after all these years, and it is my work here now.
One neonatologist down the hall realizes it’s me, the famous author, here in their midst, and hurries over, drops everything to catch up with me, to tell me, this is an important book – she read it last week on a plane, because she heard I would be here – how meaningful it is for doctors to hear the whole story from the patient’s side of the bed.
Someone has brought me tissues and I stand in the hallway dabbing at eye makeup, as I try to absorb this praise. Aware I could sob all day, bottomless buckets even after all this time, I recuperate enough to move through the cafeteria line with these fine people, swallow a few mouthfuls of bad food, attempt to keep track of conversation about the newest baby in crisis.
#
My other appointment on my last day in Lisbon is at the offices of Gradiva Publishers with the formal Sr. Begonha, who has most efficiently arranged for my cheque. Generous Sr. Begonha inquires how I’ll spend the rest of the day.
“Wander your neighborhood, drink coffee; try to process everything that’s happened.”
Sr. Begonha locates a city map and highlights his recommended path to tranquility, then walks me to the corner and his favorite café, points downhill to Jardin do Estrela (with its beautiful, shaded benches to rest on, gazebo, and wide walking paths), and beyond to his secret garden – Jardin Botanica, an oasis of palm trees, labyrinth hedges, and giant-root, ancient arbols. There, in the silence at the center of Lisbon city, I will find a shaded bench and release all my tears, shed mascara, snot, and façades of composure.
I will cry for many reasons, not least my shock that my deceased baby girl herself has led me here, to this dark green garden. Silvie, her fictional name, connects to the word sylvan, meaning, green dark forest. Aha. Her mother will smile at the image of herself weeping wetly in the garden in the city of Lisbon, so far away from home; she’ll blow her nose, wipe sweat, persist in walking through the heat onward toward the rest of her life.
#
Back at the hotel I pay my bill with the Gradiva cheque, shy around José Manuel. Business settled, he says, “I read your book today.”
“The whole book?”
“Yes. In three sessions. I had to stop when guests arrived, of course, and when I cried.”
His experience was exactly the same in the beginning, he tells me; it brought all the memories back. “But of course my son is alive, and for that I can be grateful.”
Guests come in and need his attention. Jose Manuel nods to me, embraces my hand, and I bow good night. Boa noite.
I ride the elevator to the rooftop bar and buy two bottles of water to drink in my room while I ponder the nighttime view. Outside, the calliope dance loudly proceeds.