May 2021. I’ve just emerged from a miserable month of headaches, body pains, doctor’s appointments and a mind hijacked by a carping self-sabotaging voice that told me my life was meaningless, useless and irrelevant. The fact that I turned 68 in the middle of the month may have had something to do with this existential crisis. I don’t understand how I came to be this age.
It’s not that I hate obvious signs of ageing, such as my arthritic knee or my white hair, but I was shocked when my daughter showed me a close-up photo she took earlier this week that featured extensive wrinkled skin around my neck. ‘It’s just because you have your vest zipped up like that,’ she kindly said when I involuntarily exclaimed ‘I look so old!’ I guess I am not as immune to the western cultural obsession with youth as I’d thought I was.
I feel overwhelmed with the continual adjustments I seem to be making. Like not being able to commit to the day’s plans until after I wake and find out how my head and body feel today. Like having to leave the aqua class early because a headache is looming. Like not walking in the nearby forest because my knee becomes too painful. Like trying to remain functional when gripping pain clamps my head and plunges me into despair.
Enveloped in my personal survival misery world, I am always surprised to hear that others have similar or probably worse pain and disability. I see women a few years older than me, gingerly lowering themselves into the aqua pool and moving slowly. Sometimes I think ‘That’s my future’. I don’t want it to be my future. Do I have a choice?
I marvel at the persistence of one woman who despite years and years of pain in her feet and back still comes into the water, her hair in a smart bob and her spirit spunky and resilient when we chat over coffee later. I am inspired by another 60+-year-old slim, tanned woman who tells me what an amazing difference strength training has made to her body and well-being. She’s recovered from serious injury and is powering on through life. I don’t seem to have their resilience. I don’t seem to have their wisdom.
I stumble across YouTube clips of Dr Gabor Mate´, a Hungarian-Canadian physician with a special interest in the way childhood trauma can influence physical and mental health, including addictions, autoimmune disease, cancer, attention deficit hyperactivity disorder (ADHD) and many other conditions that show up in childhood and later life. Maybe it’s his matter-of-fact humility; maybe it’s his deep conviction of the importance of the mind-body connection; maybe it is his lament that trauma is rarely included in the training of medical practitioners. Something in his message penetrates my sad heart.
He uses an approach he calls Compassionate Inquiry based on compassion for self (and the client, if one is a health or therapist professional). Instead of having one’s nervous system (that has been primed by childhood experiences) make reactive assumptions about problematic situations or relationships, compassionate curiosity is used to investigate the feelings behind the reaction and to find ways to heal the hurts that lie behind those feelings.
It’s not rocket science. It’s not new. It sounds like mindfulness. I’m familiar with that. I used it when I was counselling adolescents. What does jolt me is the realisation that it’s about compassion, especially self-compassion. I can’t believe how many times I have to learn this lesson. Obviously, I have never learned it well enough for it to become ingrained in my repertoire of responses to life challenges, because here it is again and I know in my bones it is truth for me.
Perhaps Google or Facebook was listening, because, the next thing in my Facebook feed was a video from poet David Whyte inviting people to join his Three Sundays in May series. The topic: The Poetry of Self Compassion. I can’t wait to hear his melodious Irish-American lilt and revisit this essential aspect of self-care.
How often does travel connect us authentically to the places we visit?Mostly, we sight see, we eat out, we visit museums and parks, we take tours along with every other tourist, rarely absorbing more than a superficial understanding of the place and its people. This is the story of a very different travel experience that led to a deep connection with an ancestral Italian village and its place in history.
My story begins in 1927 when Amelia Gandini, a tall, striking, young woman left her home in Faedis, Friuli, in north-eastern Italy and boarded a ship in Genoa bound for Australia. A few months later, she married by grandfather in Mackay, North Queensland (probably an arranged union – two of Amelia’s brothers were already in Queensland.) Twenty-six years later, I was born, her first grandchild, the daughter of her first-born child, Giuseppi Corrado.
I remember Nonna’s ready smile; her smooth white hair pinned in a loose bun framing the bluest of blue eyes; her never-idle hands, serving us soft drink and biscuits or fingers flicking coloured threads into lacy crochet doilies and table runners. We didn’t know any Italian and Nonna and Grandpop spoke only a smattering of English, so in many ways they were like a foreign country to us kids. They smiled and nodded kindly. They were welcoming and gentle, so quaintly different from our Anglo-Saxon maternal grandparents. Yet love found a way to cross foreign borders and rest in my heart.
I have dim memories of bath-time in Nonna’s huge cast iron bathtub that stood on a rough concrete floor; of butterfly shaped macaroni falling from a hand-wound pasta machine and strings of spaghetti drying on the wires underneath her highset house. When Nonna died, I was in my late 20’s. I grieved her death deeply. I felt cheated of the opportunity to know her in my adult body.
Decades later, I longed to visit Nonna’s birthplace, Faedis. (She never returned). My younger sister made a stopover on a cross-Europe trip in 2017. Her photos of the streets and buildings moved me deeply. I felt so drawn to the place. Of all the amazing, beautiful experiences I knew I could have in Italy, there was only one significant destination for me when a travel opportunity arose in November 2019. I journalled about travelling there. I thought about walking the streets. I imagined Nonna’s spirit smiling on me, welcoming me. I literally wrote myself into a story that proved to be rich and meaningful beyond my wildest dreams.
I tell myself that most of the buildings and places that Nonna knew would have been erased by history. Now only 12 kilometres on a mountain track from Slovenia, Faedis was close to the Eastern Front in both world wars. A devastating earthquake struck in 1976. Secretly I hope that I will find some trace of the village where she grew to adulthood. A swelling sense of excitement keeps me smiling as James and I take the train to Udine and then a taxi to Faedis. (We had been warned about the irregular bus services.)
In my mind, I have a handful of Nonna’s stories as recalled by my father and his sister, my aunt. In the cloud, we have some digitised photographs of Nonna and her brothers. I know a few Italian words (not enough for conversation) and I can read a little. I have no other tangible links to this place, only a deep desire to learn, to connect, to re-imagine Nonna’s life here.
Enter Andrea Tofolletti, a passionate local historian and our host in the beautifully restored Roman and mediaeval Affiticamere Valnascosta where we are staying. I tell him that I have seen photographs of Faedis bombed in WWII.
‘No,’ he corrects me. ‘Faedis was never bombed. It was burnt.’
Andrea speaks good English. We follow the story he tells of the partigiani, the WWII resistance fighters who kept Friuli clear of Germans and operating pretty much as normal for much of the war. Eventually though, the Germans were irritated beyond restraint by the partigiani’s continued raids and incursions.
‘They threw fire into every house and building in Faedis. The commune (local council building) was burnt. All the commune records (births, deaths, marriages) were lost. But the priest had been warned. He hid the church records in a box in the bell tower and they survived.’
Andrea tells us that he saw the church records when researching the history of the Valnascosta buildings.
‘Some of them are written on sheepskin vellum,’ he said.
Silently, I thank that priest. It’s probably due to his actions, I have a precious copy of Nonna’s birth certificate and consequently, I and my daughters now hold Italian citizenship.
Stone walls survive fire. Just one year after the war ended, Faedis celebrated their annual Strawberry and Wine Festival. Photographs show roofs re-built and life continuing in an amazing show of resilience, during those very difficult days.
What fire couldn’t destroy, the Terremoto del Fruili, (Fruilian Earthquake) almost did on May 6, 1976. The first shaking began around 9 pm and lasted 30 seconds at 4.5 magnitude. After a short pause, the main quake hit with much longer shaking at 6.4 magnitude. Many buildings with thick stone walls held together with weak mortar collapsed. The village cemetery was destroyed. Hundreds were left homeless. Despite timely and immediate response from the Italian Army then stationed at nearby Cividale, sustained recovery of the area took much longer and was shattered by an aftershock of 6.1 on 15 September, that resulted in more damage.
‘The weather was becoming cooler. People had begun moving back into their partially destroyed homes. Many of these buildings totally collapsed in the second quake,’ Andrea said.
Many dispirited residents left Fruili after the second quake. Those that remained eventually saw significant money flow from the Italian Government for village reconstruction with a mixture of contemporary new houses and restoration of historic buildings. Faedis actually experienced unprecedented economic development and was later awarded a Gold Medal for Civil Merit (an award given to people or organisations that show an exceptional level of self-denial in alleviating suffering and helping those in need.)
I am fascinated by the history. Yet it further convinces me that I am unlikely to find where Nonna lived or much physical evidence connected to her past. Her parents’ graves were probably destroyed by the earthquake. The old cemetery is now a bare gravel carpark. Families that could afford it moved their ancestors’ graves to the new cemetery out of town. I can find no trace of my great-grandparents in the beautiful new cemetery. I suspect their remains are under the carpark, next to the ancient Slavic church that was once the centre of the village.
But then….we show Andrea the photo/postcard sent more than 100 years ago in 1923 to the young Amelia Gandini from her older brother Antonio in France. It is simply addressed:
Via Udine, Italia.
Amelia took the postcard with her to Australia and her daughter (my aunt) still has the original. When Andrea saw the address, he was very excited.
‘I think I might know where is that address,’ he said. ‘Come outside, I will show you.’
On the stone shed wall that bordered the car park outside Valnascosta, he pointed to a pressed metal house number plate N85. ‘This used to be the address for this place,’ he said.
‘They have changed the numbering systems so many times in Faedis. First, they had the Napoleon system (the French arrived in 1797). Many years ago, they had this metal plate house numbering system. Now they use something different again.
‘I have found another number like this in the field near Canal del Ferro. I think your N293 is also in Canal del Ferro. I have a friend who lives there. Let me check. I think that is where the number will be. Those old buildings up there. They don’t change. They’ve been there for hundreds of years.’
Turns out, it takes more than two world wars and an earthquake to destroy my history. Turns out too, that Nonna did not actually live in Faedis proper. Canal del Ferro, is a collection of medieval two-story stone buildings a few hundred metres up the road towards the foothills of the pre-Julian Alps.
A sense of the antiquity of this area seeps into my consciousness from the reading I’ve been doing. Before the French ruled, the Venetian Republic conquered the area in 1420. Before them the Cucagna family and their noble descendants ruled and built the castles on the hills on the other side of Canal di Grive. Roman coins turn in up vineyards. Excavations during renovations of the main church in the village piazza, revealed evidence of a small Roman temple. In fact, humans are likely lived in the area since around 2000 BC, according to archaeological digs in the nearby Cjondar des Paganis Cave located between Faedis and the neighbouring commune of Attimis.
I stand in Borgo Canal del Ferro on a clear, chilly November morning touching the rough stone walls of N295 (the house of Andrea’s friend) and those of the buildings next door. N300 was nearby. One of these buildings has to be N293!
The old numbering plates were mostly discarded, especially following the earthquake restorations, and location records were probably destroyed when the commune records were burnt.
Andrea said later N293 could have actually been part of N295. Sometimes different families shared the same building.
N295 is a gracious, beautiful building with vines growing up the walls and traditional external wooden staircases giving access to different floor levels.
This borgo has to be where Nonna lived, played, laughed and worked as she grew up.
This was where in 1917, her mother Erzegovina Gandini (nee Puppini), loaded all her children and their supplies including the pig and their chickens on to a cart, hitched the cow and attempted to lead them to safety at a friend’s house in then Austria when occupation by enemy soldiers seemed likely.
This was where Erzegovina returned a week later to find her home occupied by German soldiers. This was where she and the children then slept upstairs while the soldiers lived downstairs.
This was where the soldiers ate all the family’s food stores, including their pig and chickens; broke up their furniture for firewood. (I read similar local family stories recorded in Faedis history collections). Nonna said the soldiers did not physically hurt them. Victors and vanquished, all were trying to survive a harsh wartime winter.
This was where the family would have starved that winter, except for the ingenuity of Amelia’s brothers who stole chickens and other food wherever possible.
This was where Amelia heard the bells from the Santa Maria Assunta church in Piazza 1 Maggio down in Faedis calling her, her mother and her siblings to mass; calling too many times during the Spanish Flu after World War 1, yet never once for their family.
Tears flowed as I stood in the borgo and felt the depth of my connection with this beautiful place. Green and gold autumn trees on the foothills behind me wrapped around the vineyards surrounding the borgo. Across the gurgling Canal di Grivo a few hundred metres away and up on the hills opposite, the two mediaeval castles, sharply white against the clear blue sky, watched over the valley as they had done for centuries.
Exploring Canal di Grivo confirmed we were in the right place. From the bridge I watched the clear mountain stream rush down towards Faedis. Nonna often described her mother, my great-grandmother Erzegovina, washing clothes for rich people in icy river water. In this way, she earned a few lire to supplement the income that her husband drank on his return from seasonal work in Germany.
A few days earlier, I stood on another bridge in the main village of Faedis and watched the Torrent Grive, literally a raging torrent, especially after rain. I tried to imagine accessing the tumbling fury from the steep banks to wash clothes. It didn’t seem possible.
But here at Canal di Grivo, the river was much gentler – hurrying, clear water, broken on the edge with worn slabs of rock. I could easily imagine women together there, talking, maybe laughing, washing clothes.
As we drove out of Canal del Ferro, we passed a drinking fountain: worn mediaeval stones and running water, cracked by the earthquake and wrapped around with an iron strap; so beautiful in its simple form and function. It called to my heart.
Like her mother, Amelia would have drunk from this fountain and collected water here. And almost 100 years after she left her birthplace, I her oldest grandchild, paid homage to her at the fountain. I honoured her courage and resilience in seeking a better life in a strange new country. I honoured the grief, the cracks in human experience she knew. I honoured the stories she told. I honoured the power of her love that flowed through all the decades of my life and led me to this moment.
ME/CFS Awareness week recognizes the millions of people around the world, their families, carers and allies who deal every day with ME/CFS. Emerge Australia, Australia’s lead advocacy group describes Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) as ‘a complex and disabling disease that affects many parts of the body, including the brain and muscles, as well as the digestive, immune and cardiac systems, among others. Of the 250,000 Australians living with ME/CFS, some 25% are so severely impacted they are housebound or bed bound.’
For a long time, my 20-something daughter was in that 25%. It was one of the most challenging periods of my life. I want to honour the many parents, grandparents and carers of adult children with ME/CFS. Ours is a demanding and arduous road. I reflect on my journey here:
When my daughter first became seriously ill, I was deeply afraid. I sensed that this was no ordinary illness. Her inability to get out or bed or to stomach most foods or to think rationally – this was something desperate and dire. This was no ordinary ‘flu or a simple case of exhaustion. This was a body in extreme distress, operating systems corrupted, teetering on the edge of a deathly shutdown.
In my fear, I posted on Facebook asking for healing thoughts – prayers if anyone believed in them. I wasn’t sure I believed in prayers, but we needed help. Conventional medicine offered no explanation or solutions. Alternative medicine and nutrition offered only slight relief at exorbitant prices. I wonder if friends realized how disturbed I felt or how ill my daughter was, because not many responded to my message. They probably thought ‘Oh, she’s just having another drama with her daughter.’
And they would have been correct. It was another drama and there had been plenty of dramas. All through her teenage years and early 20’s, friendships went awry; she experienced self-loathing and depression, anxiety, parties where too much alcohol and god knows what else was consumed. And me, her mother, in a constant state of hyper arousal, poised for the next phone call, the next rescue, the next catastrophe. Perhaps, I thought, my friends are tired of hearing all this.
Lately though, she’d been more settled. She’d lived in Italy for a year, working and travelling, returning home only when her visa expired. She determined to save up quickly so that she could return to the country where she felt completely at home and where she could remain indefinitely on an EU passport recently acquired through Italy’s jus sanguinis, the Right of Blood. This legal principal of Italian nationality law allowed her to claim Italian citizenship through me. I in turn claimed it from my father who was born in Australia at a time when both his parents were still citizens of Italy.
I felt alone, physically and emotionally when at 24, her body systems flicked into the peculiar, elusive illness that most people call Chronic Fatigue, medically termed ME/CFS. It happened suddenly, but in retrospect, of course there were warnings. I look back and see the flashing red lights.
Her gut was insistently intolerant of gluten, despite a later colonoscopy revealing she did not meet medical criteria for coeliac diagnosis. The cruel requirement to eat gluten in the lead up to the test made her so ill and weak (with either constipation or diarrhoea) that she could barely walk into the hospital. She persisted in the vain hope some new information might be revealed.
Since childhood. consuming dairy products linked with eczema which now broke out again frequently. But the most dramatic warning was the difficulty regulating sugar levels. Medical and DNA testing finally revealed that she was a true hypoglycemic – someone whose insulin production does not do the timely switch off after eating sugars. In this state, she resembled the spent spring of a music box ballerina doll. Her speech and movements faltered like the tinkling music as the doll twirled ever more slowly. Her thoughts were scrambled and her body was faint, dizzy, cold and clammy. She could not function. She could not drive herself home from work where she managed a fashion retail store. The doctors said ‘take glucose’ (first we had to find a gluten free version) ‘or a juice’. She quickly learned this sent her into a spiralling cycle of energy followed by slump; energy followed by slump. She called it a ‘sugar crash’.
These were the stop signs, cleverly disguised as errant, malfunctioning, temporary ailments, belying the extreme distress that now enveloped her. In those first miserable months, she barely left her bed, except for many stressful medical appointments and tests as we searched for answers. She went days without showering because the physical exertion utterly exhausted her. Sometimes she needed to be helped to and from the shower. She was so dizzy, she could barely stand. I became her physical carer in all but official status. I did her washing. I drove her to appointments. I helped her shower. I made her meals.
Most foods sent her gut into painful spasms. I tried smoothies filled with supposed super-foods. I researched non-irritant foods and learned to cook without onion, garlic, tomatoes, capsicum, cheese or any other dairy product, sugar and gluten. I crushed almonds and made our own almond milk. I tried to make kefir probiotic and yogurt from the almond milk. I bought organic food.
I continually trolled the internet looking for research and answers. I printed off reams of confusing, conflicting information. Eventually I found the ME/CFS Australia Facebook group where authentic user information was honestly shared, including recommendations for sympathetic doctors and other professionals. Many doctors still don’t recognize ME/CFS as a serious medical condition. The resulting gaslighting and disrespect that my daughter experienced exacerbated her emotional and physical distress.
All this happened while we lived in our beautiful octagonal home, in a beautiful bushland setting on the outskirts of Brisbane. I was usually alone with an adult daughter barely able to shower herself and spiralling deeper and deeper into a self-destructive depression as more of her life disappeared every day: the job, the friends, independence, and her sense of self. My older daughter was working and travelling overseas. My husband was interstate managing a massive project that consumed his attention. He came home some weekends but did not seem to understand the depth of my fear and despair. I struggled to explain that the darkness in our daughter’s room was seeping out and threatening to engulf me. My life was on hold and my future, now bound to my daughter’s was very unclear.
People told me later they admired my resilience, my care and patience, my dogged attachment to hope. Mostly, what I was feeling was terror at the responsibility of ensuring, as much as was in my power, the mental and physical well-being of an adult child who was incapable of rational decisions or physical activity. On the worst days, I made brief forays to the gym or the supermarket and returned home in fear, approaching her silent, dark room, dreading what I might find.
Almost eight years have passed since my daughter lost the life she thought would have. She turns 32 this week. We’ve all been in COVID-19 lockdown for the past 60 days – a situation that has introduced millions of people to the lifestyle that people with ME/CFS live interminably (albeit with less reliable energy). Ironically, the enforced insolation has removed pressures of physically attending doctor’s and therapists’ appointments, her main excursions, and her health has improved slightly.
Six months ago, she was just well enough to successfully apply for a scholarship and then to enrol in an online life coaching course. This has literally been a life-line, connecting her to inspiring women, some of whom have created viable careers despite chronic illness. She is currently developing her own online coaching business. Mentoring other womxn (sic) to change mindsets, set boundaries and increase confidence and self-worth will allow her to share the wisdom of her hard-won life experience as well as potentially creating a independent lifestyle.
She still needs to pace her activities and their emotional demands very carefully. She still needs to rest. She rarely sees friends face-to-face. Every outing requires the energy payback period, requiring extra rest, and sometimes including headaches and exhaustion. She’s made close friends online. She is building a new life day by day. She still plans to return to Italy.
Perhaps my friends’ thoughts and prayers did work. My daughter is still here. That in itself is a miracle. Amazingly, she is stepping into a new version of herself, living with ME/CFS. If I believed in prayer, I would say something like these words I wrote in 2015 when my daughter was entering the third year of severe illness. I offer them now in gratitude and deepest hope that all sufferers of ME/CFS may find the life beyond.
Beyond the four walls, the white ceiling and the cluttered floor
beyond the nausea and death-like weakness
beyond the brain fog that renders decisions almost impossible
beyond the persistent need for excessive rest
beyond the merciless chip, chip, chip of malicious despair
beyond the job no longer worked
beyond our fractured family
beyond those doctors who will never understand
and who have no magic cure
beyond the well-meaning friends who suggest getting a grip
beyond the fear that this will go on and on until the end of days….
Beyond lies hope, frail and shimmering
an indistinct shape of a life that is joyous
fulfilling, purposeful, committed
beyond lies whispered confidences with a lover
beyond lies an adored puppy
beyond lies travel and return to your beloved Italy
Was it prescience? I made a vision board in January and devoted a chunk of it to intentions to focus on spiritual growth, intuition and meditation. I highlighted the words: wisdom, resilience and growth.
I chose these words because I wanted to add that focus to my life. But as the ancient adage from Aesop’s Fables (circa 260 BC) says: ‘be careful what you ask for.’ Who knew that just two months after gluing those words to the poster, a pandemic would find me digging deep for my own wisdom and resilience? Whether I want to or not, I am going to grow.
I am heartbroken at what is happening in Italy. My father is the son of Italian immigrants who came to Australia in the 1920’s after WW1.
In the last few decades, I have been increasingly drawn to my Italian roots. I connected with a distant relative while my daughter was spending year working and travelling in Italy in 2011. Last year I stayed in Faedis, the small village in Fruili-Venezia-Giulia, where my grandmother was born and lived until she came to Australia in 1927. Now I feel as if half my heart lives in Italy.
To see the heroic efforts of the Italian medical staff; to know the devastating Utilitarian choices they are making to save younger over older lives (and this in a strongly family-orientated culture); to hear the indomitable spirit of people singing from their balconies; all this moves me to tears. A queer sense of pride rises in my blue-sky, brown-land Australian heart for these people, this culture and this country that I claim as part of my heritage.
In the time of coronavirus, I draw strength and resilience from my Italian ancestors. I and my daughters are here partly because of their incredible resilience. My grandmother (Amelia Gandini) was fifteen when the last pandemic l’influenza Spagnola (Spanish Flu)came to Faedis in 1918 just over 100 years ago. She said every family in the village lost at least one person. A vigil would be held in the home with candles. Then when the bells rang in the piazza, she and her brothers and their mother would run up to the church to say Mass.
No-one died in Amelia’s family but her mother (my great-grandmother) became very ill with a high fever for many days and all her hair fell out. This is the same woman who washed clothes for rich people in icy running water for a few lire to feed her family. I’ve seen that icy running water. It’s a beautiful river if you don’t have to wash clothes in it.
This is the same woman who tried to take her children to safety when the area came under enemy occupation. She loaded all her children and her chickens on a cart and with her cow, she led them to a friend’s house and supposed safety. I don’t know why this did not work out but a week later she returned to find her home occupied by enemy soldiers. For the remainder of the occupation she lived upstairs with her children and the soldiers were downstairs.
This is the woman who somehow found the means that winter (with the help of Amelia’s brothers who stole and scrounged food wherever they could) to keep her family alive (1917-1918). Amelia said that the soldiers were hungry and cold. They ate all the chickens and the pig and the family’s winter stores. They burnt all the wood stored for winter, then the family’s furniture. These were desperate times. The hardy and resilient – my ancestors – survived.
We all have ancestors who lived through difficult times – wars, pioneering days, economic depression, undiagnosed and untreated mental health issues, chronic ill health, family tragedies, natural disasters, discrimination, racism, injustice, etc. Their blood runs through our veins. Their collective resilience and strength are in us still; their capacity to dig deep, their wisdom and way of being runs in our DNA.Let’s call on these qualities, the gifts of our ancestors to help us through these strange days.
Then we will be able to say, like our young friend in Brescia, in one of the worst affected areas of Italy:
‘We in Italy are all fighting and we won’t give up, never at all. The only thing we can do in this moment is staying at our home. This moment is a kind of opportunity to have time to stay with our families. It is a kind of moment of reconciliation.’
Which of you ancestors inspire you with their resilience and strength? Comment below.