The call came from Sicily. My sister Lucia’s husband, Pietro, was likely dying of emphysema. He had traveled to his home village, Alcamo, months before because his brother was terminally ill with leukemia. And then Pietro ended up at death’s door himself.
My sister Janice and I flew over to help Lucia and Pietro for three weeks in February. Pietro rallied, though he remains seriously ill in the apartment he owns in Alcamo, a village of about 45,000 people an hour’s drive from Palermo.
If Pietro were back in the United States, he’d be in a “casa di riposo” – as nursing homes and rehabilitation centers are called in Italy. But nursing homes are not yet widespread in Sicily, because families are expected to do most of the care for their sick relatives.
For much of our three-week visit, Pietro remained in Ospedale Cervello, the major hospital in Palermo. Family members are required to stay overnight with their ill loved ones.
My 12-hour graveyard shift in a room with seven Sicilian men – four patients and their male family caregivers – provided me insight into socialized medicine, the stretching of personal boundaries and death and dying, Sicilian style.
8 p.m.: The other family members bid their good-byes. Official visiting hours are over. Four patients, and four caregivers, remain. I am the only woman. We settle into our lawn chairs for the long night.
Lucia had bravely done overnight duty five times in a row before her grown children arrived in Sicily.
My 41-year-old niece Francesca volunteered for the first overnight. She said, “I labored for 14 hours, without any drugs, to deliver a baby sunny side up, so I can do this.” She did. And then we all signed up.
The rooms are freezing at night. Sicily is experiencing its coldest winter in 25 years. Snow fell in Alcamo the day before, and delighted village children fashioned their first snowballs.
The heat is lowered at night, because – as one nurse explained – “we save our energy, unlike in the United States, where you waste it.”
I wear tights, three pairs of socks, lights sweats, pajama bottoms over the light sweats, heavy sweats on top of those, boots, a T-shirt, a sweatshirt, a knit vest and stocking cap. I cover myself with a down coat and two blankets.
No privacy curtains exist to separate the beds. The men all have catheters, but I pray no one needs a bedpan in the middle of the night.
10 p.m.: The overhead light is still on. No one sleeps. I knit. My cell phone vibrates. I free myself of blankets and walk into the hall.
My husband is calling from the United States. It is 1 p.m. in Spokane and Tony tells me his plans for the day: coffee with Chris and Mike, a workout on the treadmill, a meal he’s cooking for his children and our grandson. The plans sound like missives from a utopian reality. I believe I will never make it back to that reality.
I describe the halls of the hospital to Tony. The walls and floors are marble. They are spotless. Framed conference posters feature the doctors who work in this teaching hospital. They are world-renowned for their lung-disease research. It’s as if we’ve landed at the University of Washington Medical Center without knowing it.
I tell Tony that I am standing next to a 2-foot statue of the Blessed Virgin Mary, shielded behind glass. She has silver medallions around her neck embossed with tiny lungs. Rosaries are draped over her arms.
Families buy the medallions and the rosaries when a family member recovers. Tony nicknames her “Our Lady of the Lungs.”
Midnight: The patients sleep, though the family caregivers remain awake. Like Pietro, the patients all look to be in their late 70s. They have likely all smoked since childhood.
Pietro took up the habit at 10, buying one cigarette at a time from the corner Tabacchi. American soldiers who later helped liberate Sicilian villages gave the young teen boys cigarettes and chocolate.
Pietro has suffered with emphysema for a more than a decade. He quit smoking several years ago but resumed the habit while watching his brother die a horrible death from cancer.
Palliative care for terminally ill patients is not yet big in Sicily. Expensive treatments and medical tests for the ill and dying are free, however, because Sicily has socialized medicine.
Two of the patients wear elaborate breathing devices that make whoopee-cushion sounds. One patient snores loudly. Other body noises fill the room, too.
I feel as if I’m in a surreal adaptation of “Snow White and the Seven Dwarfs,” spending the night with Whoopee, Wheezy, Coughy and Gassy.
2 a.m.: Still not a wink of sleep, though the nurses have finally turned off the overhead lights. To drown out Wheezy and company, I listen to the “The Marriage of Figaro” on Francesca’s iPod. She is studying Italian opera and says the only way to really convey the Sicilian hospital experience is to write an opera about it.
One of the caregivers is a young man from Lampedusa, an island below Sicily. His grandfather, the patient, has 21 grandchildren; two have traveled with him for the hospital stay, because they are unemployed.
The caregivers smoke throughout the long night, on the balcony outside the room and across the hall in the men’s bathroom. The next day, Pietro tells me he misses smoking every waking moment.
3 a.m.: Still no sleep. No nurses, either. Night nurse Alfredo Guerriero (who is now helping out with Pietro’s care at home) explains later that there are only two nurses for 22 patients and just one nurse’s aide. So families must stay overnight to prevent patients from panicking in the existential, dark hours and ringing the bell too often.
I walk down the hall to the women’s bathroom, carrying my own toilet paper, soap and towel, because these are not provided for the family caregivers. The cell phone of the Lampedusa caregiver rings with a disco tune. Friends out for a night on the town, looking for him.
5 a.m.: Still no sleep for me, but all the men around me snooze. I walk into the hall past a room that says “Mini-Hospice.” I had been hopeful that the room meant Sicily has a Hospice program, but I later learn it’s for people receiving cancer treatments.
I look out the window. A pack of wild dogs guards the parking lot, along with a developmentally delayed man who collects small tips for this guard duty. I list all the things to appreciate when I return home: central heating, hospital nurses who respond to bells during the night shift, Hospice programs, leash laws.
8 a.m.: I have slept about two hours, Figaro singing in my head. The Italian I spoke 32 years ago during my Gonzaga-in-Florence experience has returned, but I cannot remember the Italian word for survive, so I make one up: Surviviamo. We survived.
I exchange glances of camaraderie with the male caregivers, my fellow survivors. We hurriedly fold up our lawn chairs and place them on the balcony. The doctors will make rounds within the hour. They do not want to see the caregivers or their lawn chairs.
Doctors in the United States might secretly wish they still carried the clout of Sicilian doctors, especially these lung specialists who are treated like deities. They give family members about one minute of information each morning and then walk away. They answered most of Lucia’s questions with “Soltanto Dio sa.” Only God knows.
Patients don’t sue doctors in this socialized medicine reality, so the doctors do not practice defensive medicine. They have put Pietro on strong antibiotics, a prednisone drip and on oxygen, and they have practiced patience. The bronchitis and pneumonia that complicated his emphysema are clearing up, though his legs and lungs are so weak, he cannot stand at all.
I have been to Sicily four times now and the experience always challenges my illusion of control over life’s random happenings. My overnight with seven Sicilian men makes me appreciate that the barriers that separate us – man from woman, American from Sicilian, the sick from the well – are mostly illusions, too.
What remains for me this morning is a feeling of gratitude for staying present to suffering people. That said, I can’t wait to flee the room.
Before I leave, Pietro asks: “Do you think I can walk around soon?” I say: “Soltanto Dio sa.”
And then I walk out of the room, into the new Sicilian day, bowing my head to the doctors who pass me in the hallway.