My wedding headdress was a simple arrangement of wire covered with white organza and topped with a small floral strip of white carnations; pearl beads scattered over. Three strands of piping, dotted with pearl flowers hung from the back. It was held in place with two small hair combs. I still have it. Should I keep it?
On my wedding day, it held my thick wavy hair in place. I wore my hair loose, not in the traditional bun worn by women in the Friends, the sect into which I had been born. Apparently, some liberties were allowed for weddings. The headdress, and the short lengths of trailing piping at the back were my nod to a wedding veil, definitely NOT worn by any girls at weddings in the Friends that I knew of at the time.
It was a happy day.
After all the organisation of choosing and printing wedding invitations, mailing them out at the required time (I think it was six weeks’ notice, as recommended by wedding etiquette magazines); after completing the typing of James’ electrical engineering thesis; after getting the place cards printed; after writing out the vows; after all the anxiety and the uncertainty about whether guests would actually physically be able to attend, due to huge deluges of rain and flooding; after seriously thinking the whole thing ought to be cancelled because of the weather; after all this, it was a happy day.
I didn’t think too much beyond the day. I knew that having sex that night for the first time might be a thing, (sex before marriage was definitely NOT an option in the Friends), but I wasn’t too worried. James looks so sweet and soft and handsome in his pale blue wedding suit, with wide navy satin lapels. He had chosen me. I believed in our love and thought it would conquer everything. We were different. Our love was different. We would be happy forever and ever.
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.
I chose this pieces as a keepsake, a memory of Nonna, my Italian grandmother, after her death in 1981. I was shocked when she died. I felt robbed, then and ever since, of the opportunity to really know her and connect with her, after I had grown to adulthood. She was 77. I was 28.
These items and some other brightly coloured finer crochets were amongst pieces left for us grandchildren by Nonna’s only daughter, my aunt Josephine. When I hold them in my hands, I sense Nonna’s intention, resilience, effort and skill.
‘She did miles of crochet and knitting,’ Josephine tells me. “It kept the mind sane and she was always excited to find a new pattern. She believed in busy hands.’
The pretty blonde doll wears a knitted hood tied under her chin and the vertically ruffled skirt flows from a short-knitted bodice giving an effect like Red Riding Hood’s cloak, except this skirt is in sky blue with contrasting pink, lemon, orange and brown stripes. She’s like an old-fashioned Barbie Doll, blonde hair tied in two young-girl pigtails with pink bows, yet I can feel pert breasts through the knitted bodice. I lift the skirt to discover it is lined with another knitted piece and the doll’s torso has been cut, just below her belly button. She has no legs. Who cut them off?
For the longest time, I thought this doll was meant to be placed over a toilet roll. You know the kind that used to sit on the floor of the toilet in your grandmother’s house in the 1960’s. Sometimes the doll held a little message that read:
‘If you run out, please don’t shout. Just lift me up, I’ll help you out’.
But today as I am writing this and examining the doll carefully, I see there are two concealed slits on either side of the skirt for a teapot handle and spout. You could grasp the cosy by its bodice to put it on the teapot and pull it off. As a teapot cosy, it suddenly has more value. I have to keep it.
Nonna and Grandpop often sat on the front porch of their tiny retirement house that was located on the main road south of Mackay. To the north, the road led to what we called the City Gates. Maybe there were gates there in the old days. Now it just marks a confluence of roads and a railway crossing. As they watched the passing traffic, I wonder if Nonna ever thought about her youngest son, killed off his bicycle, when he was clipped by a truck, the driver not seeing the lone night rider on a bicycle without lights? Did she think about her other children? Did she dwell on the decades of her marriage to my often taciturn and patriarchal grandfather?
I’ll never know. But I do have this evidence of some of the time she sat there, fingers wrapped around coloured thread, a ball of wool in her lap, knitting needles clicking and flicking as the doll’s bodice and cloak emerged like woven magic. Nona’s hands were never idle. She told Mum that in Faedis, the village where she grew up in NE Italy in the early part of the 20th century, new wool was precious. As their children grew, the women unravelled the pullovers and jackets knitted in previous years and knitted the garments again, adding in more wool to enlarge them for growing bodies. Knitting was a necessary survival skill.
In this photo of the Carniche Portatrici, the women and girls who carried ammunition and food to the Italian soldiers fighting trench warfare in the rocky, heights of the Italian Carnic Alps from 1915 to 1917, you can see the heavy gerle (baskets) still on their backs. The women appear to have stopped for a moment on their way to replenish the soldiers’ stocks of food and ammunition. Each woman is holding handwork with knitting needles and thread visible for some of them, probably stored in her apron pocket ready to retrieve at a moment’s notice. The needles, the wool and her intentions to make a warm winter garment go everywhere with her, even on that arduous, steep and difficult trek up the mountain. Several accounts remark on the women knitting and sewing on the route, and when they took a break. When they were not walking their hands were busy. I think Nona was like that. When she was not cooking, making the bed, or sweeping out their simple house, she knitted, she crocheted, she sewed.
There is also this crocheted round cushion cover. Beautifully even stitches in scalloped edge circles radiating out from a central motif. There’s satin cloth loosely attached to the back, as if that was meant to hold the crochet work in place. Potentially a cushion cover. Never completed. But so colourful and neatly done. I can’t part with this either.
I want Nona’s life to have meaning. She came out to Australia, no doubt full of courage; sheer grit and endurance required for the six awful weeks of seasickness on the passenger boat. She married the man her brother brought her here to work for; birthed him two sons, then after a break another son and a daughter.
For us grandkids, it was all strange. Grandpop’s and Nona’s accents were strange. Conversation was difficult. Dad did not teach us any Italian. Was she sad about that? She talked in Italian to her daughter and shared all she knew about sewing, knitting, crochet, and homemaking with her. Did she yearn to see the hills around Faedis again? Did she remember the soft mists rising in the hills above the vineyards after rain.
If she thought such things, she did not show them. She always smiled, her bright blue eyes and smooth face framed by straight white hair swept back in a bun. She was always happy to see us. She’d shuffle inside to the simple kitchen, pour lemonade or cherry cheer into small glasses with coloured patterns printed on the outside. She’d put out a plate of Arnotts Cream biscuits – Iced Vo Vo, Orange Slice and Monte Carlo.
‘Eat. Eat,’ she would say, pushing the plate towards us.
How often does travel lead to an authentic connection with 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, Corrado.
Amelia Gandini on her wedding day to Giovanni Stroppiana, Mackay, Qld, Dec, 1927.
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 drying on racks and strings of pasta falling from a hand wound machine. 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 long 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 move me deeply. I am so drawn to the place. Of all the amazing experiences I know I could have in Italy, there is only one place I want to go when a travel opportunity arises in November 2019. I journal about travelling there. I think about walking the streets. I imagine Nonna’s spirit smiling on me, welcoming me. I literally write myself into a story that proves to be rich and meaningful beyond my wildest dreams.
Close to border with Slovenia. Photograph by James Hills
I tell myself that most of the buildings and places that Nonna knew will have been erased by history. Secretly, I hope to find some traces but I think the odds are against me. Faedis is now only 12 kilometres over the mountains from Slovenia. Of course, this puts the village perilously close to what was the Eastern Front in both world wars.My sister told me that a devastating earthquake struck the area in 1976. Still a lovely sense of anticipation 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 head, I have a handful of Nonna’s stories, as recalled by my father and his sister, my aunt. In our records, 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 evidence of my connection to this place, just a deep desire to learn and 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 Valnascostawhere we are staying.
Entry to breakfeast room, Valnascosta. Photograph by James HillsAndrea Tofolletti, host extraordinare at Valnascosta and enthusiastic local historian. His help was invaluable to my understanding of the village and its history. Photo by James Hills
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 in 1944, that 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. The thick stone walls of many buildings were held together with weak mortar. They simply 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:
Alla Signorina, Gandini Amelia, Faedis N293, Italia (via Udine)
Photograph by James Hills
Amelia brought the postcard with her to Australia and her daughter (my aunt) still has the original. When Andrea sees the address, he is 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 borders the car park outside Valnascosta, he points to a pressed metal house number plate N85. ‘This used to be the address for this place,’ he says.
‘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.’
The old number found in a field near Canal del Ferro. Photograph by James Hills
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 have probably 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!
Smiling through tears of belonging in borgo Canal del Ferro. Photo James Hills
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 says later that N293 may 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.
N295 in Canal del Ferro. My grandmother lived in N293. It has to be nearby! Photo James HillsPart of the borgo Canal del Ferro. Photo James Hills
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 flow as a deep sense of connection to this beautiful place seeps into my being. Green and gold autumn trees on the foothills behind me wrap 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 medieval castles, sharply white against the clear blue sky, watch over the valley as they had done for centuries.
Exploring Canal di Grivo further convinces me that we are in the right place (or maybe I just want to believe this). From the bridge I watch 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 is much gentler – hurrying, clear water, broken on the edge with worn slabs of rock. I could almost see those women one hundred years ago, rubbing their clothes on the stones, maybe laughing and chatting.
Canal di Grivo
As we drive out of Canal del Ferro, we pass a drinking fountain: worn mediaeval stones and running water, cracked by the earthquake and wrapped around with an iron strap. It simple beauty in form and function calls to my heart.
Fountain near Canal del Ferro
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, pay homage to her at the fountain. I honour her courage and resilience in seeking a better life in a strange new country. I honour the grief, the cracks in human experience she knew. I honour the stories she told. I honour the power of her love that flowed through all the decades of my life and led me to this moment.
Renee Hills (Stroppiana) 2020. Amelia Gandini was my paternal grandmother.
I am peering through my window into the future, through a portal to unpredictable days, where two worlds touch – the pre COVID-19 past and a future I cannot see clearly. ‘For now, we see through a glass, darkly’
My vision is clouded. I can peer as intently as I like and wish for gypsy confidence that the portal will reveal what I really want. The poet Rumi said ‘You must ask for what you really want’. What do I really want? And why is it so difficult to diagnose and act on what is happening in the world at present?
Photo by Greg Rosenke @greg_rosenke Unsplash
I found answers to the last question in the words of Jamie Wheal, co-author of New York Times best seller titled Stealing Fire: How Silicon Valley, Navy SEALs and Maverick Scientists are Revolutionizing the Way We Live and Work’. As well as being an expert in peak performance and flow state, Jamie Wheal has studied historical anthropology specializing in utopian social movements.
In an interview titled Sense Making in Chaos, he offered three explanations for why it is difficult for us to find clarity when looking into the future. He was interviewed in July 2019 in the context of growing disenchantment with: governments, financial systems, inaction on climate change, collapse of the promises of globalism, social injustices, the whole post truth era where one questions who and what is trustable. How much more complicated is the world situation now with the COVID-19 pandemic!
Why it is so difficult to see into the future?
Jamie Wheal suggests that the first reason we find it so difficult to look into the future is because of the complexity of the situation demands complex cognitive capability in our minds. The mind has to be aware of cognitive biases and hold conflicting ideas to be able to grasp the complexity of the issues. Approximately 5% – 10% of the population have this capacity. They can provide scaffolding for others to understand.
The second reason is our own cognitive bias. What version of reality do we take for granted? What are our sacred cows? What stories do we tell ourselves to make meaning of our world? What is our paradigm? Do we believe in a free market? Do we think European countries should retain their cultural identity? Do we think that the universe is unfolding as it should? Do we think some supernatural power is going to save us?
Such concepts may be deeply wired. We may be unwilling or unable to change them. We need to be aware of these biases because the future may ask us to hold all sorts of highly de-stabilising, unsettling and contradictory possibilities, all at the same time. If we can’t do this, our meaning making is skewed.
The third reason flows from the first two. Jamie Wheal describes it as our ability to digest grief. If our version of reality is shaken to its very foundations, we need to find a way to handle the death of the sacred cows. If all our future happy plans, the way we thought the world worked, if all this unravels, of course there is grief. Deep grief.
We can be crushed but he says we MUST find a way to reach the place where to quote poet Wendell Berry we can ‘be joyful though you have considered all the facts.’
The world is awash in grief at present. So many unexpected and premature deaths; so many jobs lost; so many relationships changed; so much loss of creative outlets and platforms in arts and entertainment; so much violence towards women in domestic crises; so much trauma piled on top of whatever was previously happening (e.g. in Australia, the slow recovery from devasting summer bushfires).
It’s easy to feel overwhelmed. How can one be joyful, despite knowing all the facts?
The gypsy and the government
If I asked a gypsy to read the future, s/he/they would take my silver. Our governments take our silver and offer their readings. I feel deep sadness because I fear their prescriptions are following the same old money driven mantras, the same old prosperity pathos, the same old neoliberal lines.
My email feed is filling up again with subjects like: online action to protest against the huge Adani coalmine; supporting school students climate action; petitioning politicians to put #PeopleBeforeProfits; and the blog lamenting that the proposed ‘snapback’ of the Jobseeker payment will push thousands more ageing women into poverty in Australia.
Re-starting the economy seems to me like stepping back into the arena and watching out again for: the next threat to the environment, to other species, to social justice, to human rights; taking whatever small action I can. The pandemic gave some people breathing space to think outside this treadmill of threat/response and to imagine a saner, more just world.
A different world
I’m a dreamer so I’m longing for a different world. One where my young friend in the Philippines earns more than $5 a day working as a sales assistant in a phone shop and can easily save the few hundred dollars she needs to take her teacher registration examination;
Where a universal living wage affords dignity to the needy;
Where local communities nurture industry, food production, leisure, sports and entertainment;
Where actors, writers, musicians, artists, singers (and creatives) are valued for their insights, their inspiration and access to inner wisdom.
Where education is valued, accessible to all
Where compassion moves government policy towards dignified access to resources for the unemployed, the unwell, the disabled and any who for whatever reason cannot participate in the economy.
Where the environment and all species have a voice.
That will take a miracle!
Photograph: Marco Bertorello/AFP via Getty Images
Some thought it a miracle when the final span of the replacement Genoa bridge dropped into place at the end of April 2020. The old bridge tragically collapsed in August 2018. In nine months, including through the pandemic, the new bridge was almost completed. When asked about this amazing feat, the chief construction executive said ‘They say it’s a miracle – it’s not a miracle, it’s the work of human beings, men and women, using their hands.’
People of all persuasions using their hands, hearts and minds with a unified purpose can create miracles. This is how we come to the joy, though we have all the facts.
I look through the portal, my window in time and I see the places and events where the world as I would like it is beginning to happen. I celebrate the countries moving quickly to renewable energy. I note tentative moves towards a universal basic income. One report said: Pope Francis, Facebook founder Mark Zuckerberg and European Central Bank vice president Luis Guindos all agree: it is time to think about a universal basic income in the face of the unprecedented economic abyss caused by the coronavirus health crisis.
In Australia and across the world there are many community-based initiatives that have been quietly gaining momentum for decades. For in-depth information on this check out Local Futures. Founder of this non-profit organisation, Helena Norberg-Hodge has advocated for years for localisation as a response to the global corporate economy. Localisation can reduce distances between the product and the consumer, especially for basic needs of food, clothing, housing.
Farmers markets are a template for local economies. According to Norberg-Hodge, farmers get 10% of the product price sold in a supermarket; 40-50% through a coop and almost 100% at a farmers’ market. Ideally this should mean better quality food, less waste (because it’s not the right shape or size), less transport, less refrigeration, less preservatives, less advertising; at a better price for the consumer.
Less tangible social benefits ensue. Research has shown, people have 10 times more conversations at farmers markets, than when shopping at the supermarket!
Successful intentional communities work best when participants adopt ethical principles. How amazing would it be if our governments operated ethical principles perhaps similar to the Universal Declaration of Human Rights. If government words and actions reflected such ethical principles, perhaps their trust index would rise.
At community level, one can find effective life-affirming organisations. I am a member of a world-wide liberal religious community that subscribes to similar principles. It has been my privilege to learn ways to integrate ethical concepts in some small way into my world paradigm and to have conversations that hopefully reflect some of the ideals.
Choosing joy
Choosing joy is ultimately a personal decision. Like the poet Maya Angelou, I realise joy is essential to life in the future because it nurtures resilience. She wrote:
We need joy as we need air.
We need love as we need water.
We need each other as we need the earth we share.
Remembering to choose whatever is needed to bring joy and care to ourselves in difficult and painful days is essential – meditation, poetry, dancing, art, singing, writing, exploring nature, walking, whatever!
Our only option is to be like the kangaroo and go forward into the unpredictable days of our future, with eyes firmly fixed on joyous glimpses of the kind of world we want. Who knew that the kangaroo is the only animal in the world that cannot move backwards? Who knew too, that the emu is the only bird that cannot walk backwards? Perhaps that is why they both appear on Australia’s coat of arms!
The Real View from my Window
This is what the camera sees from my window – varied shades of tropical green and that amazing blue sky synonymous with Queensland winters. Yet, when I look out my window, what dominates the scene for me is a dead strangler fig tree. You can see the scraggly pale branches if you look closely.
I remember and feel sad that the tree has died because a root was cut. I remember that the tree’s roots were constantly encroaching on our grey water treatment tank. This was a problem because the we humans chose to put an attractive source of moisture close to where the strangler fig began life wrapped around a eucalyptus tree. I remember we are all part of the interconnected web of life. Every action has a consequence.
I give thanks for the tree that added such verdant green while it was alive. I see the lifegiving green in all the other trees. I notice the beauty and the joy despite the facts.
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
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
Renaissance Renee 