ON CARE, CARE-GIVING AND PIRACY
‘Caring for myself is not self-indulgence, it is self-preservation, and that is an act of political warfare.
Audre Lorde

Something disturbing, if bizarrely fascinating, happened as I set out to write this blog/Substack. Deciding to take its title from a think piece I had written in 2020, I had a momentary panic that the wording, which I had acknowledged drew on Lorde’s definition of self-care as political warfare, might have been taken from somewhere else. Such are our times. Putting the phrase into the search engine to check, without remembering to place my usual minus AI at the end, something I find helps maintain my sanity when researching online these days, I found AI was already there waiting to greet me – and happily offering me a synthesis of my own article:

“Care as a Radical Act” is an influential 2020 think-piece and essay written by arts educator and researcher Chrissie Tiller for the social arts agency Heart of Glass. It explores how neoliberal systems commodify care and the arts into rigid, transactional provider-recipient models, stripping genuine care of its political power.

It then continued to summarise what it identified as the ‘Core Ideas from Tiller’s Work‘, offering citations and brief definitions of the ideas presented in the article, ending with the suggestion, ‘If you’d like, I can: Detail how Tiller connects radical care to community arts and co-creation. Intrigued enough to decide to take up this offer I found myself reading a pretty solid summary of the piece, categorising its focus into four bullet points Shifting Power Dynamics, Prioritising Process over Product, Embracing Friction and Dissonance and Centring Collective Well-Being. I was then offered the possibility of digging even deeper into Tiller’s work by being offered a précis of the arguments I had made in what was referred to as my ‘seminal’ and ‘landmark’ book Power Up. This was followed by an analysis of the ways my latest piece for A New Direction Spaces of Possibility and Pockets of Hope draws on bell hooks and Paulo Freire’s notions of critical pedagogy as a way to frame more inclusive approaches to arts and cultural education.

It didn’t take me long to realise I could quickly find myself disappearing into a Tiller rabbit hole. Tiller’s views on everything from social arts praxis, feminism, neoliberalism and cultural democracy to political activism were all captured, often as competently, and even more systematically, than I might have done myself. The skill, and let’s be honest flattery, with which ‘it’ was re-presenting me with my own thoughts and ideas almost made me question my use of ‘it’ to speak about this persona. Especially when ‘it’ was so clearly concerned to treat me, as the researcher, with care and attention, speaking to me in the first person, always asking me if I ‘was interested’, or if I ‘would like to’, before we set off together on our shared journey through the vagaries of Tiller’s mind. It was almost as if we were old friends and colleagues.

I quickly began to understand, although I have never engaged with them myself, how something like ChatGPT or Claude might impact young people and students, when even the word chat or the use of the first name already suggests a caring, reciprocal relationship. Who wouldn’t welcome this ‘someone’ who was there to help make your writing better, express your ideas more clearly in friendly, open tones and without any need to have to plough through the original texts? Especially when that someone was modestly prepared to admit they may have got some things wrong and ask you to forgive them for any errors.

AI’s role in what feels like the destruction of civilisation as we know it has long felt disconcerting. As have growing governmental and big-tech demands to build endless data centres to provide it, despite their uncompromising appetite for human resources such as water and energy being prioritised over the needs of local communities, as in Gary, Orlando. But this personal engagement with AI and its uncanny ability to synthesise and re-present even my own thought processes left me unnerved. It also brought me back with a jolt to my original impulse to re-visit Care as a Radical Act in a time when so many of our ‘needs’ are supposedly being met, or about to be met, by technology and machines.

My original text Care as a Radical Act emerged from an invitation in 2020 to become writer-in-residence for Heart of Glass during the Covid lockdown. I saw my role as partly being to witness and respond to the increasing sense of isolation and vulnerability artists and communities were feeling at this time. It also felt like an opportunity to reflect with the team on how they might preserve the ‘ecology of collaboration, community and collective responsibility’ central to their work when the ‘social was absent’. And to do that without simply moving everything online. The fifty initiatives funded by the resulting open call, ‘Home Work’, were inspiringly diverse and inventive in their search to find new ways of working collaboratively and creating ‘spaces of care’ when people were still constrained by the rules of lockdown. Ranging from a creative gardening initiative in an elders care unit to a mini-circus in the forecourt of a block of high rise flats to work with young mums to turn cliched objects of housework, such as ironing boards and hoovers, into totemic symbols of women’s power, each project saw artists working collaboratively with communities to discover what being together might mean in this climate.

For a while it felt as if this new reality might have given artists and communities permission to dream of new ways of connecting, not only with each other but also with our planet and its resources. We began to speak about rebuilding an arts and cultural sector that would be ‘more collaborative, more transforming and more caring’, that would place artists and communities at its centre, creating spaces (not buildings) where inclusion, diversity and cultural democracy would become real possibilities. Seeking inspirational models of collective action contributing to bringing about social justice we came upon the Pirate Care syllabus: a ‘provocation and an invitation’ to use the current crisis to rescue care from the ‘systems that exploit it’ by ‘commoning’ and sharing our resources, tools, technologies and knowledges. Acknowledging the labour involved in care the syllabus spoke of the invisibility of those who provide it, the unpaid or low-wage status of that labour and the need to challenge the power relations inherent in our current systems. It suggested the possibility of working at the intersection of activism, self-organisation and the commons to reimagine a more collective and radical form of care, and in doing so, to ‘pirate’ it from the grasp of neoliberal cuts and rationalisation and create a more caring, juster world. In a challenging time, it provided us with a momentary beacon of hope and a call to action.

Sadly, the disjuncture between the world we began to reimagine and the realities of artists trying to make work that was more collaborative and survive within a hierarchical arts funding system was also sharply exposed by Covid. It became clear that real change needed to take place at a systemic level.

Returning to Pirate Care’s proposals now, through the prism of the division and inequality fostered by big tech and its oligarchies, it is clear how quickly those hopes of becoming a more radical, caring and connected society were destroyed. Whether it is the unofficial, unpaid care provided by families because the state has relentlessly pulled back, or the self-care Audre Lorde proudly asserted should be an act of political warfare against systems that do not care for us, care has been ruthlessly outsourced, defunded and commodified. On one end of the spectrum ‘self-care’, little more than a concept promoted by a luxury business sector where ‘wellness’ is an indulgence available for those with the money to pay for it. On the other, basic human services, from healthcare to housing to education to social welfare, have been left scrambling for dwindling resources in a climate where the vulnerable are regularly portrayed as undeserving scroungers or an unnecessary burden on the public purse.

Neoliberalism has firmly positioned those in need of care in terms of a perceived lack of financial input to economic growth and development. The contribution of those providing unpaid care in both economic and societal terms is systemically discounted. Care has become something that should only be offered to those who can battle the way through endless complex hoops to prove they are deserving. The notion of an ‘undeserving poor’ mockingly dismissed by Eliza’s father in George Bernard Shaw’s Pygmalion has become a reality. What social, medical and mental health care is on offer has been siphoned off into the hands of businesses whose workers remain some of the most poorly paid while investors and senior management focus on bonuses and profit margins. The mutual aid groups that optimistically emerged as grassroots initiatives during Covid have largely disappeared as capitalism has reasserted its greedy grasp. Even small-scale local initiatives such as food banks have been co-opted by the system, largely it seems to provide camera opportunities for royalty and unpopular MPs.

Those of us providing the limitless amounts of unpaid, unofficial care the system increasingly relies on are becoming more and more isolated from each other as we necessarily spend more and more time in the home. The companionship, allyship and solidarity many of us seek is mostly being met by online support groups, carefully timed by access to big-tech AI resourced programmes such as Zoom or Teams. Any appetite or capacity we might have had to organise the federations Pirate Care suggests will be needed to harness possibilities for change has been undermined by the need to survive within systems that refuse to value those providing the care they are increasingly absenting themselves from. Whether we are artists working to promote wellbeing with communities facing a myriad of complex challenges or simply partners, families or friends voluntarily taking on roles that often require skilled knowledge and understanding of different conditions, we are being left to find the strength and resilience needed within ourselves. It is probably no coincidence that both groups are suffering from exhaustion, burn out and mental health challenges.

Despite all this, Pirate Care’s new book makes it difficult not to have one’s passion for collective action reignited. Thoughtfully curating stories of initiatives from all over the world where communities have successfully challenged their right to clean water, access to knowledge, housing, medical supplies or childcare they set out to offer effective examples of radical and alternative visions of care. They also encourage us to recognise these can be found just as powerfully in unsung moments of ‘anonymous everyday solidarity’ as in ‘bold acts of resistance in the face of ruthless repression’. The power of collective action taken in the face of care denied to those who seen as undeserving or wrong communities is beautifully exemplified in the ‘three tales from the high sea’ offered in the Ouverture to the book. The determination of Captain Carola Rackete to bring the migrants she had rescued from their sinking dinghy to the shores of Lampedusa, the Women on Waves decision to take contraceptive pills to women in countries denied reproductive healthcare and the Freedom Flotilla’s commitment to carry humanitarian aid to Gaza cannot help but capture our sense of what is possible when we come together in solidarity and care for others.

The fact that these acts of collective kindness are progressively being proscribed, outlawed and criminalised by supposedly democratic governments across the globe only further highlights the importance of finding ways to come together and act collectively to nurture and nourish what is left of our shared humanity.

Care, as Lorde so often reminded us, is not something any of us can do alone, whether that is care for others or care for ourselves. By accepting oppressions and trying to manage caregiving by ourselves we are in danger of simply feeding the systems we are struggling against. Care, despite the claims of the post-human world we are entering, cannot, and must not, be separated from the solidarity, mutuality and autonomy needed to resist systems that are already moving so readily towards autocracy and imposing greater division. Care requires connection, it requires community, it requires us to ensure we have the mutual strength to fight for our own care, for those we care for and for those the system has already decided, like the disabled, the old, those facing mental health issues, or those seeking asylum, are no longer worthy or deserving of care.

As Sara Ahmed notes in her response to the epilogue of A Burst of Light from which Lorde’s thoughts about caring for ourselves are taken, ‘We reassemble ourselves through the ordinary, everyday and often painstaking work of looking after ourselves; looking after each other. This is why when we have to insist, I matter, we matter, we are transforming what matters. Women’s lives matter; black lives matter; queer lives matter; disabled lives matter; trans lives matter; the poor; the elderly; the incarcerated, matter.’

Self-care in this context is not an indulgence, it is not a privilege. In the uncaring world we live in to insist we matter as caregivers and as those in need of care is ‘an act of political warfare against systemic oppression’. In the fight against growing institutionalised and structural oppressions it is an act that will necessitate us finding new forms of interconnectedness and new models of care that recognise our interdependence on each other and on the planet we live on. One of the sub-chapters in the Pirate Care book is titled Care as piracy, piracy as care. We need to ‘make a pledge to each other’ its authors suggest in their final chapter, ‘to liberate care in all its political joy, and a spell to hold each other dear as we set sails to take us into the gathering storm.’

Liberating care from the grasp of capital, by embracing a collective form of piracy, is inordinately appealing.

* Pirate Care: Acts Against the Criminalization of Solidarity. Authors: Valeria Graziano, Marcell Mars, and Tomislav Medak. Published by Pluto Press 2025.

ON ACCEPTANCE
‘Marriage is memory: marriage is time …‘
Joan Didion

Once I had seen the photo shared above it was impossible not to want to play with it as an image. Maybe it was the Founding Fathers look of the clothes we’re wearing, the colours and textures of the background or the slightly odd postures created by the angle of the shot, but it immediately felt like something that was calling out to be rendered in oil. The infinite reflections in the mirrors behind us only added to a sense of something composed with a painterly deliberation. Grant Wood’s American Gothic, Hockney’s My Parents and Myself in which he appears in the mirror behind them, like Van Eyck in The Arnolfini Portrait, came to mind, as did some of Hopper’s couples, despite our very obvious smiles. It felt as if we had somehow become part of that long history of formal paintings of couples, often commissioned as marriage portraits, that not only capture the two people involved but, in the choice of setting, the details in the clothing, the objects they are holding offer the observer a vivid sense of the behaviours, customs and values of other times.

Although the sense of there being an intended viewer made me feel disconcerted at first, I have become fond of this image for that very reason. The leather bag across my shoulder, the decision to not quite perch on the table, the empty glass in S’s hands, the phones held up camera-like in the reflections all come together to make it a suitably quirky metaphor for the day. The odd formality it suggests feels a peculiar fit, too, for my decision not to simply celebrate our 55th wedding anniversary with a party, we have always been good at parties, but to mark it with a ceremony in which we would renew our marriage vows.

The title of this piece I now realise already carries within it some of the complexities and paradoxes contained within this decision. The positioning of the words ‘I” and ‘we’ in the sentence signifies a relationship that is increasingly defined by our delineated roles; the ‘Carer’ and … ‘the person who is cared for’. Interestingly, just as there is no word for a parent who has lost a child, except in Arabic, there is no unique word or term, in English at least, for the person who receives care. Social services mostly use ‘client’, as if it’s simply a business contract while medical workers refer to ‘the patient’ as if the illness is the sole focus. Others turn to familial descriptors like ‘spouse’ or ‘partner’ or ‘husband’. All of them redolent of a reciprocal and equal relationship that can no longer exist. Yet the very fact that there is an ‘I’ and a ‘we’ in our case is deeply rooted in a marriage that has lasted fifty-five years. A marriage full of shared memories. A marriage that has extended over time. As more and more of us find ourselves having to face futures other than those we might have planned I sense we need desperately those words, to develop a language that might begin to give meaning to those shifting realities.

Once ‘I’ had made the decision that ‘we’ would mark this day by renewing the commitment we had made to each other in those original vows – for better, for worse, for richer for poorer, in sickness and in health – I was quickly aware it would be something I would be taking on on my own. I did speak about it with S. I suggested it was something we might both like to do. But I am learning to accept the future is no longer something we can plan together. Executive functioning, including the capacity to think ahead, make decisions, organise or plan are among the first things to disappear with behaviouralFTD. I knew I would be metaphorically flying solo,, even if I was certain it would be something we would find joy in together when the day came.

Choosing the church that had held us so lovingly as a couple and a family after Jamie’s death, helping us create a ceremony that reflected the rich web that was his life so perfectly, seemed the only place to start. I wanted to find a way to celebrate and show gratitude for the love and the friendships that have been such an important part of the history of our long marriage, with all its ups and downs. I also wanted to find space to acknowledge the strength, resilience and support it will take to make new meanings and memories in the times to come. Tosin, the new rector, listened to our story and created that space for us and our friends and family opened their hearts to it From the moment we entered the church the day was filled with joy, spirituality and meaningful connections. It was also a day that encompassed the grief, the pain and the loss which were such an important part of its reasoning.

Each time I decide to document and write about the unexpected journey my present life has become I have found myself doing what Joan Didion calls going to ‘the literature’, hoping to find the thoughts and words of others that might provide an anchor or a point of departure for my own. It has been fascinating then to find that so little has been written about long marriages, unless one counts Middlemarch and The Rainbow which I read for ‘A’ level English. But both of them seemed to focus on little more than the need for self-sacrifice. There is even less, apart from illness-focused memoirs, on how one learns to be a Carer for someone with whom one has always been in a partnership of equals. In an interview for the Paris Review, American writer George Saunders playfully describes long marriages, his own was twenty-five years old at the time, as one of the ‘under-narrated’ pleasures of life. I would simply want to include all its complexities as well as its pleasures in that description.

Without discovering poems or lines of wisdom from novels to turn to, I found myself going back to the reading from Corinthians on love, which, with Tosin’s help, I chose for the renewal of our marriage vows. The love it speaks of is not something starry-eyed, idealistic or romantic, although it has been all of those in our long history, but instead presents it as something that ‘bears all things, believes all things, hopes all things, endures all things’. It is love’s ability to do this and to be ‘patient’ and ‘kind’ in the face of all kinds of adversity that I wanted to remind myself of in planning this day. I also wanted to celebrate love’s capacity to ‘rejoice in the truth’, and, in doing so, lead us to want to be part of the struggle for justice that I know has been one of the lynchpins of our marriage. Love does and can ‘never end’ in that sense. It is often the times we set out together on marches for Palestine or take part in other struggles against oppression that remind me of how deep our connections and our love still run. And how, simply by being there, we receive so much love back from so many others.

One of our friends remarked what a strong sense of that kind of love he had found in the people who came together that day. Not everyone was able to be with us who would have wanted or who we might have wanted to join us. But as I turned to look at our eldest son, Luke, and saw so many friends, from the one who drove S to the hospital the day Luke was born, to old neighbours whose children grew up with ours, newer neighbours with whom we built community, friends made at college and work who became part of our extended family, friends we met through theatre, arts projects, political activism, the shared loss of children or finding ourselves ‘carers’ for husbands and spouses, and even friends of our children who have become our friends, I saw our history and I knew we were blessed. I also knew I had made the right decision.

This love that has been given to us and that we have shared with each other and with others was why I decided we would renew our marriage vows. What better reason could there be?

ON MAKING LISTS
‘The list could surely go on, and there is nothing more wonderful than a list … we make lists because we don’t want to die’
Umberto Eco

ONE:
Things I have lost
My Tonsils. Removed by surgery.
My Adenoids. Removed by surgery.
A piece of one lip. Torn off on the steps of Liverpool Cathedral.
My Coronation mug. To my Auntie Kathleen’s china cabinet
My Dad. Too young.
My virginity. Too young?
A mole. Carcinogenic. Removed by surgery.
My Mum. When her body finally decided to follow her mind.
One breast. Carcinogenic. Removed by surgery.
My sense of symmetry. That just followed.
My black hair.
My ability to run.
My younger son.
Forever here in my heart.
The person my husband was.
Damn, damn, damn
To that dratted brain disease.

Things I have found
A half-crown I lost in the snow.
Two sheep bones on a moor.
A gold ring in the garden. 
My wet swimsuit in the locker room. 
One leather glove.
One of my favourite earrings.
One purple sock. (Why always one?)
A photograph of my Dad.
Someone guilty of a crime.
My own way home.

TWO:
Things I have learned
My catechism.
How to ride a bike.
Two live languages.
One dead one.
My 12 times table.
How to conjugate French verbs.
Not to believe
Everything they tell you.
The grass isn’t always greener
On the other side.
To eat oysters
And love them.
To live in close proximity
With somebody else.
Thigh gap is what
We should all be aiming for.
Joy is transient. 
But so, I dare to hope, is pain.

Things I have never learned
To drive a car.
To play a musical instrument.
To skate on thin ice.
To keep my opinions to myself.

THREE:
Things I have worn
A brace on my teeth.
My school uniform.
An Easter bonnet.
New clothes for Whitsun.
Hot pants.
Maxi-skirts.
White stilettos.
Wedge heels.
A surgical gown (more than one)
A wedding dress. (only one)
A fascinator – there was a time.
Two maternity smocks.
Seamed stockings.
Anti-embolism stockings.
Flesh coloured tights.
Reading glasses.
Varifocals when the latter gave up on me.
An anti-Vietnam War pin.
A Women’s Lib pin.
A Coal not Dole pin.
A Healthcare not Warfare pin.
A Free Palestinian pin.
Rings on my fingers …
A Lourdes medal.
A St Christopher medal.
A watch my Mum once bought me.
My heart on my sleeve.

Things I wish I had never worn
Flesh-coloured tights.
My hair in spiky rollers.
Purple lipstick.
Hot Pants
White stilettos
Smock tops.
My heart on my sleeve.

FOUR:
Things I have seen.
A shooting star.
A kingfisher on a river.
Mount Fuji.
A sunrise over the Alps.
Sunsets over Hackney high rises.
A Blood Moon.
A ‘little silver slipper of a moon’.
Norwegian fjords from the air.
(It finally made sense of all those geography lessons)
The Church of the Nativity in Bethlehem.
The Wall of Separation in Jerusalem.
The Berlin Wall – before and after it fell.
Hadrian’s Wall.
London Wall.
Wall Street.
York City Walls.
Derry City Walls.
A dry stone wall.
The fourth wall.
(Broken down on occasion).
Wall to wall carpeting.
A party wall.
Millwall. Though only from the train.
Wallsend.
(I don’t quite know why the walls took over at one point
Probably best to stop there).

Things I have never seen. 
The Great Wall of China
The Lighthouse at Alexandria
The Temple of Artemis.
The Hanging Gardens of Babylon.
The Pyramids.
The Aurora Borealis.
The Barrier Reef.
A chrysalis become a butterfly.
Down the barrel of a gun.
Peace in Palestine.
The light at the end of the tunnel.
And, although I have
Claimed to have done so,
I’ve not yet “Seen it all’.

FIVE
Things I like about myself.
A determination to be positive
And find joy wherever it’s to be found.
(Hence list five)
The colour of my eyes.
The shape of my mouth (see earlier)
My white hair (see earlier)
My passion for justice.
My ability to find synergy.
My sense of humour.
(Some of) my writing.
My home cooking.
Especially when I use up
Everything that’s left in the fridge

Things I like in others.
A propensity to laugh/even smile
At my wordplay or jokes.
It’s more than enough …

SIX:
Things I’m afraid of
Insanity. 
Mortality.
Eternity.
Even that word
Sends shivers
Down my spine.
Paranoia.
Heights.
Depths.
Wasps.
Rats.
Anything that flies
Near my face.
Turbulence in planes.
Lightning in storms.
Letting go.
Not being liked.
Needing to be liked.
Being old.
(OK. I’m already there).
No one remembering me.
Once I’ve gone.
At this point it’s probably better to confess – that is the big one.
No one remembering me once I’m gone

Things I’m (trying to be) brave about
All of the above.
And more.

‘

ON POETRY AND THE METAPHORICAL

The other night we went to see the newly restored version of Tarkovsky’s Nostalghia, a film we first saw in our early twenties. The film famously ends with a nine-minute uninterrupted take. We the audience are hypnotised; physically caught up in the tension, holding our breath as Gorchakov attempts to atone for the lie he has told to the ‘madman’ Domenico by crossing a drained thermal pool with a lighted candle. As he makes his first and second attempt, failing each time as the wind makes the flame sputters and then go out, it is as if we have become one communal body willing him to succeed. No one moves. No one makes a sound as he touches the side, relights the wick with his recalcitrant lighter and, shielding the flame with his hand and then his overcoat, sets out for the third time. His journey is increasingly agonising to watch, as he slowly and purposefully crosses the pool, finally straining with his whole body to reach the metal steps and place the candle, still burning, on the opposite ledge. Underscoring what we sense has become the profoundly spiritual nature of his task, the rising choral music comes to a sudden stop as Gorchakov then groans and collapses. The shot is broken. The screen blank. It is only as the camera pans away to the faces of those watching that his death is confirmed.

Yankovsky, the actor who played Gorchakov, has shared Tarkovsky’s confession that he wanted to complete the whole sequence in one take in order to ‘display an entire human life – from beginning to end, from birth to the very moment of death.’ ‘If you can do that’ he challenged, ‘If it really happens and you carry the candle to the end – straight, without cinematic conjuring tricks and cut-in editing — then maybe this act will be the true meaning of my life. It will certainly be the finest shot I ever took’. And it is. One of the finest and most iconic shots in cinema ever. Its potency and power undiminished however many times you have seen the film.

On the way home it feels as if we are both still caught up in that shot. We walk slowly and carefully as if needing to protect the flames of our own candles. For a long time we are silent. I am trying to hold back from asking questions, making comments. It feels important, over forty years since we first saw this movie together, to leave space. But then, seemingly at once, we both start to speak, exclaiming words in turn – ‘the rain, the steam pool, the candles, the Alsatian dog, the wooden house in the abbey, the fog, the white horse, the woman translator with a face like the Piero della Francesco painting’. And as we each repeat ‘oh yes!’ or sigh in response it feels, as if we too are capturing a life – a lifetime together – in one take.

Further up the street I start wanting to compare the film to The Liberation of Skopje – a play directed by the Serbian director Ljubšia Ristić in which S. played the Chief of Bulgarian Police in a rough, oversized leather coat. Transferred from Serbia to a large open space at the Riverside Studios it included a white horse, rain, pools of water and an Alsatian dog on stage, as well as an amazingly acrobatic ‘Roma actor on crutches called Siniša who had been working as a shoe-shine boy when Ljubiša first met him on the streets of Zagreb and invited him into the company’. Hoping to extend our earlier interaction, I am keen to analyse the relationship between Lubišca’s staging and Tarkovsky’s films, knowing they were both working on their pieces at the same time. I recognise I am also eager to recapture something of those early married days, when it was more or less compulsory to follow Tarkovsky movies like Solaris and Mirror or Bergman’s Cries and Whispers or Scenes from a Marriage with glasses of cheap red wine, roll your own cigarettes and discussions with friends on the ‘meaning’ of the films that went on into the early hours of the morning.

But today our exchange stops as abruptly as it began. We don’t go on to speak about the incredible process of remaking Skopje in London, or the invitation to join Ljubšia’s company KPTG (after the first letters of the words for theatre in every Yugoslav language) in Belgrade that followed. Nor do we mention the way Ljubšia’s biography later began to map the violent collapse of Yugoslavia itself through rash and ill-advised political choices. All of which S has captured so vividly in the extended memoir in the form of a letter to his parents who died within six weeks of each other in 1976 that he was writing so ferociously for the two years before he was diagnosed.

At home I tell myself the exchange of images that had astonished or delighted us was enough. I know now that the act of reflection, like imagining the ‘what ifs’ in life, no longer comes easily to those suffering from FTD. Later, I find myself needing to revisit the section in S’s Hi Mum, Hi Dad memoir that deals with The Liberation of Skopje. The memoir is almost two hundred pages long. It weaves together his personal responses to the political landscape post-Thatcher for his parents with the resultantly political nature of the theatre, opera and writing that were central to who he was for over fifty years. His explanations of the way working in Gaza and Palestine caused him to reclaim his Jewish heritage and how directing and running workshops and trainings with young actors and different communities renewed his love for teaching run through the piece act like weft to the warp of the main concerns. Reading it now it is as if his brain wanted to capture all those things that mattered to him about theatre, politics and life before FTD ensured the flame of the candle he was metaphorically carrying flickered out. Writing is not a thing he any longer does.

Seeking for Meaning
I have learned over the years that despite our youthful attempts to unpick the exquisitely haunting images that make up Tarkovsky’s films he frequently discouraged himself people from wanting to work out what they symbolise. ‘We can express our feelings’ he explains, ‘regarding the world around us either through poetic or descriptive means. I prefer to express myself metaphorically … not symbolically.’ The difference, he goes on to explain, is that a symbol is somehow easier for us to grasp, containing as it does, a definite and finite meaning which can be abstracted, while a metaphorical image is an indefinite ‘being-within-itself’ that falls apart, like a monomial mathematical expression, on touching. Asking his audiences not to keep seeking meaning, like editors, he suggests instead that we simply allow the images to act directly on our hearts. Until we are able to allow that to happen, he insists, there is no meaning.

At the moment S has a need to photograph the evening sky from our windows. On these endlessly cloudless summer nights, the changes are minimal. Sometimes there is a shift from blue to pinky blue to orangey pink as the sun sets, occasionally a waxing or waning moon hangs over the high rises on the horizon. The images he captures are not shared anywhere. Instead they remain as photos in the camera app on his phone; unseen by anyone else. There is no suggestion at meaning. No symbols. And yet watching him take the decision, often impulsively, to stand by the window and create these images every evening it can feel as if the act of wanting to capture a particular moment is poetic and metaphorical in itself. Poetry, Tarkovsky proposes is not about working in a particular a genre but about possessing ‘an awareness of the world, a particular way of relating to reality.’ Nothing else is needed.

What is so difficult as a carer for someone with bvFTD is to accept the different behaviours that present themselves as simply part of a ‘particular way of relating to reality’, rather than wanting to manage them, make sense of them for oneself and others, or somehow fix them. It’s difficult too not to become frustrated or angry with the person exhibiting them rather than being able to respond to the behaviours themselves as manifestations of a brain that is damaged and no longer working in ways that conform with acceptable norms. We are not comfortable as a society, or as individuals, with difference.

In Nostalghia Tarkovsky presents us with two men who, for different reasons, are unable to conform with the acceptable norms of their societies. Gorchakov, the poet, has left his family behind in Russia and is now overwhelmed and tormented by internal spiritual conflicts. Domenico, a teacher who has previously imprisoned his family for seven years in fear that the world was about to end is now driven by a conviction to speak out in public spaces against the ‘out of joint’ state of the world. Unexpectedly, Gorchakov finds himself becoming attached to Domenico, wanting to protect him from the ‘normal people’ dismissing his speeches as the rantings of a madman and save him. He fails to do so and Domenico ends his life by self-immolation. Yet as he finally commits to crossing the thermal pool with a lighted candle, an action Domenico has told him will save mankind he forges a bond that takes him beyond his obsession with his own crisis. ‘We are not alone in an empty universe’, Tarkovsky tells us in Sculpting in Time but are linked together by ‘countless threads’ that mean ‘each separate life and every human action has intrinsic meaning’ for all mankind.

What moved me so much about Nostalghia this time around was that Gorchakov and Domenico are both ‘outsiders’ in society because neither of them acts in ways that conform to what Tarkovsky identifies as the rules of ‘normal behaviour’. Despite this, as he does with so many of his protagonists, he refuses to judge them; presenting them instead, with all their flaws, with inordinate compassion, tenderness and love. ‘I have always liked people who can’t adapt themselves to life pragmatically’ he explains elsewhere.

Perhaps it’s time for all of us to resist the need to be pragmatic, realistic and sensible in the face of all that is happening in this dysfunctional world.

ON SUBJECTIVE TIME
‘I know this much: that there is objective time, but also subjective time, the kind you wear on the inside of your wrist, next to where the pulse lies. And this personal time, which is the true time, is measured in your relationship to memory.’ Julian Barnes

Next month, on August 7th, S. and I will have been married fifty-five years. Four years longer than my lovely but troubled my father lived. We had already lost him by the time we left university together and decided to get married.

Fifty-five years. Over half a century. They tell me the emerald stone traditionally associated with this anniversary signifies resilience, hope and enduring love. I can’t help but think of Dorothy, the Lion, the Tin Man and the Scarecrow’s journey to Emerald City in the Wizard of Oz, dreaming of being something more than themselves, seeking for someone who will give them qualities such as bravery, learning or love; only for them to find they already possessed them. They just needed the Wizard to point that out.

Fifty-five years. Over half a century. Fifty-five years ago I married a young man who dreamed. A young man who slowly learned to craft those dreams into beautiful, poignant, funny, sharp, political and magical pieces of theatre and opera. A young man who wanted to listen to people’s stories, share people’s stories and find meaning in people’s stories that might help us think how best we might live our lives in this troubled world.

I had imagined that young man and I might go on following those dreams together, always and forever … Until death us do part.

But life is not always as kind as it should be. And nothing in our lives together, in the dreams, the stories, the theatre, the music that was part of them prepared us for life’s cruelties. Nothing prepared us for the desolation that would follow the loss of one of our sons. And nothing prepared me for learning, soon after, that I would also lose that young man with dreams I married all those years ago. Not in ‘the ordinary instant’ of sudden death that Joan Didion experienced, nor through any wilfulness or deliberateness on either of our parts. Instead through the slow unravelling of the knots I had imagined would always bind us by a disease that causes the atrophy and eventual death of the nerve cells in the front of the brain. It is a disease that cements the brain in a kind of rigidity, keeping it permanently fixed in the present tense and immediate experiences, destroying one of our most beautiful capacities as humans to let our minds wander, closing down our ability to imagine things being otherwise and, cruelest of all, removing the ability to daydream.

Oh Rose thou art Sick …
It’s probably important at this stage for me to explain a little more about behavioural Frontotemporal Dementia. For this is the disease I am describing. It is one of what are called the orphan diseases. Not because of the physical impact they have on those who suffer it or those who care for them, although the term often feels metaphorically appropriate for bvFTD, but because they affect less than 5 people in 10,000. There are only 7000 orphan diseases in the whole world. It’s rareness means it is relatively unknown even by the medical profession. It has no clear markers. No fixed symptoms. No predictable pathways. As yet there are no known causes, no treatment and no cure.

Like ‘the invisible worm’ that ‘flies in the night’ in Blake’s poem, bvFTD acts by stealth, silently eating away at the frontal and temporal lobes, disconnecting them from the rest of the brain and in doing so altering behaviours, destroying personalities and causing a distressing loss of empathy and understanding of the emotions or feelings of others. The damage it inflicts on the neural networks means those parts of the brain responsible for self-awareness, for reflection and deliberation no longer operate.

Those suffering from it also suffer from something called anosognosia, or a lack of understanding that anything is wrong with them. All this makes it notoriously difficult to diagnose. It also makes it the most isolating of the degenerative brain diseases to deal with for carers.

All Things Counter
It’s difficult to pinpoint when things really started changing for the dreamer I married. Or more accurately when I, and others, started noticing things had changed.

I wonder now if there might have been portents during Covid. But all of us were living in a strange space in those times. It became impossible to imagine anything other than living in our weirdly cocooned worlds. For the first few weeks of lockdown we were afraid of even leaving the flat. When we eventually came out of our self-imposed isolation we began to go for what we bizarrely described as ‘walks’ – despite them being little more than covering a few hundred yards back and forth along our little canal basin. Sometimes we invited neighbours to join us – always keeping the correct distance – sharing stories of the lives we had all lived other than in London. Some mornings we got our bikes out early and rode into the centre of the city. The streets were empty and we had the capital to ourselves. We took what now look like oddly disturbing photographs in which we still wore our masks even when there was only the two of us there. It was as if they had become part of us. The whole world was topsy turvy and disjointed and so were we.

FTD begins with small almost unnoticeable changes things. No one journey is the same as another. The first thing our friends mentioned was a heightened concern with working out everyone’s best routes home. Often as soon as they had arrived. Like most young actors he had always had a ‘side’ job. Hospitality, building sites, office temping, teaching English as a foreign language. Cycle couriering was the one he loved best, as he created a slightly roguish character with suntanned muscular legs in his cycle shorts and singlet. A rogue who managed to snap bike frames in two through overuse, occasionally got stopped ‘by the cops for going the wrong way up one-way streets or other minor infringements’ and answered to the call name of ‘Ginger’ – on ‘account of his hair colour’. Cycling madly through the streets of the city dropping off packages, artwork, documents inevitably led to the odd accident on slippery roads and the resulting cracked bones. But, like once getting a casting at a company he used to deliver to, that was part of the craic. It also meant that like most taxi drivers he probably developed a larger hippocampus as he began to know every single street in London. If developing a compulsion to work out people’s ‘best routes’ home, even to the extent of knowing which part of the platform to be on for changes on the Ubahn whilst in Berlin seemed odd, it also felt like a quirky revisiting of old skills.

There was the period of compulsive, almost driven, walking along the same routes day after day which is typical of FTD. In his case it meant losing so much weight his doctors sent him for every available physical test, including MRIs, to try and find the cause. The coupling of this with a deep and heartbreaking concern for not having creative work, a growing inability to grasp basic social skills such as standing in queues, realising one wouldn’t necessarily get served as quickly as one wanted in restaurants or clearing the table before everyone else had finished eating eventually led to a diagnosis of extreme anxiety. When this was accompanied by a need to retell our recent loss in great detail to strangers as well as friends, the possibility of PTSD was mentioned. Medication generally advised for psychiatric disorders such as OCD and anxiety was prescribed. Nothing worked. And no one knew why.

There were other random indicators. A rapidly diminishing ability to read others’ responses which led to unpredictable confrontations. Some of which, like the time he met Peter Mandelson in the park and asked him when he’d last spoken to Epstein, were funny when whe recounted them. There was a time he insisted a fellow volunteer at the food bank, who was a fierce supporter of Israel, might want to listen to the story of his friend who had died in the Gaza bombings. And a day when he responded to a woman who told him Jeremy Corbyn was a ‘moron’ while he was delivering campaign leaflets with ‘maybe you are the moron, madam’. But if he didn’t any longer grasp why apologies might be needed in such circumstances none of us were inclined to insist.

A shifting sense of present and future time began to mean setting off hours too early for everything, constantly arriving prematurely for appointments, and increasingly pre-empting tasks around the home like setting tables for meals long before needed.

Diagnosis of the behavioural form of FTD is famously difficult and is almost always preceded by years of misunderstood symptoms and mis-prescribed solutions. No one is to blame. It’s rareness means most doctors have no experience of it. It took an agonising month, when his whole character seemed to fall apart, when everything that had made him the person he was disappeared in a tumult of agitation, which we later learned was almost certainly exacerbated by the wrong medication, to send us looking for more help. A fortunate alignment of holiday rotas at our local GP surgery that meant we had to see someone other than our regular doctor finally led to meetings with the one female doctor who had come across bvFTD, for her to tell us she was ‘95% sure’ this was what it might be.

Endless rounds of appointments with neurologists, psychiatrists, social workers, MRI scans, blood tests, memory tests, more MRI scans coupled with voraciously reading what little research there is to be found online, means that like my fellow carers in the online support group I now belong to, I have become a ‘lay expert’ on the condition. Our need to explain as carers, even to many health workers, that while bvFTD comes under the umbrella of ‘dementia’ it has little or nothing to do with Alzheimers has somehow placed those of us who do the caring in the role of a Greek chorus, acting as intermediaries between the protagonists and audiences, or in our case patients and doctors.

Like a Greek chorus we are also the collective voice of the trauma, witnesses and participants, observers and questioners, often possessing insights and knowledge whilst needing to give voice to our own bewilderment and confusion. As the Elders in Brecht’s Antigone explain, it is a role few of us would have chosen.

Writing things down, whilst adhering to the need to ‘read, learn, work it up’ and ‘go to the literature’ that Joan Didion speaks of, especially during times of trouble has always been one of the ways I begin to make sense of myself and the world. My close encounters with bvFTD are beginning to feel like a way of turning my casting as ‘Chorus’ into something that might help others understand this complex condition and its impact on those who now find themselves ‘carers’.

Postscript: Pied Beauty
At the final prize giving at my Catholic convent grammar school in 1967 I was presented with a book of religious poems. I remember taking it from the hands of the nun who had made our lives such a misery in our final years and wanting to tear it up in front of her. It wasn’t even a beautiful book. It looked cheap and the pages were rough and grey. It also included a lot of poems by the nuns’ favourite Jesuit poet Gerald Manley Hopkins, whom we’d been forced to study alongside Ten Twentieth Century Poets for ‘0’ level. Needless to say I had been vociferous in my essays in stating a preference for Edward Thomas, Edwin Muir, Robert Frost at the time. At sixteen I had little sense of, or desire to understand, the dark night of the soul or profound spiritual crisis it seemed Hopkins was speaking of.

The past few months have changed that. Rediscovering Hopkins through coming across the lines in Carrion Comfort where he shares his determination not to submit himself to the bleak but tempting comfort of Despair, I find myself unsettlingly reassured by his ferocious wrestlings with God, his faith and hope. His willingness to lay bare his internal struggles speak to me now in ways I could never have expected. The uncompromising rawness of the language, the abruptness of the rhythms that once jarred and confused seem to echo and trace the fierce maelstrom of emotions imposed by what I have come to know as anticipatory grief. The grief we sometimes feel at the change of seasons or changes in our lives, Hopkins explains perfectly in Spring and Fall, are so often caught up with that mourning of the loss of selves we once knew.

His almost electrifying delight in the ‘swift; slow, sweet; sour’ paradoxes of this world in Pied Beauty has become something I find myself wanting to capture and give voice to. Even when things seem so unfair, so random, I am beginning to recognise there is joy to be found in the ‘dappled’ imperfections of nature and discover a new love for:

‘all things counter, original, spare, strange;
Whatever is fickle, freckled (who knows how?)’
Pied Beauty

As I try to take this determination to celebrate all things counter and different forward I am also wondering if, perhaps in time, Mr Hopkins might even reconcile me to the nuns?

ON RADICAL HONESTY
‘We must be willing to let go of the life we have planned, so as to have the life that is waiting for us.
E.M. Forster

It was with a heightened sense of inevitability that I realised I would not be able to follow Didion’s Year of Magical Thinking with anything other than Blue Nights. When I go to pick it up at the bookshop where I have ordered it, the young man behind the counter remarks with a grim smile, ‘Looks like you’re in for a gruelling read.’ I find myself snapping back at him, ‘She lost a child and I did too!’. Seconds later I bitterly regret my response as he confusedly mumbles something about finding solace. Anger. Guilt. Shame. Usually in that order. None of them so very far from the surface these days.

As I open its pages and begin to read, it is almost as if I was destined never to have really known Didion’s work until this point. I am and have always been a voracious reader of women’s writing. How, I wonder, did her books slip off my reading lists? Was it to do with her class, her politics, the disturbing visual elision I have created between her and Vogue editor Anna Wintour? Or simply an aversion to texts that appeared so full of stories of people whose names we mostly know through gossip columns in the popular press that it felt as if she was teasingly offering us a seductive, but transient, insight into worlds from which we knew we were permanently excluded?

Perhaps it was all of these. Yet somehow here we are. Joan and me (We even share a name). And it is almost as if we are sitting in each other’s company. Me learning, as the book unfolds, how our lives have crossed in the strangest and darkest of ways. Losing a child. Losing a husband. Losing our sense of who we are within all this. I find myself exclaiming out loud, as she writes of the sudden tragic death of her young friend, Natasha Richardson, that I had forgotten that shocking moment when Corin Redgrave, her uncle, had shared that news with us. And how unimaginable and unspeakably cruel it had felt that such a loss could happen to anyone had seemed at that time. ‘This was never supposed to have happened to her‘ Didion notes, repeating the words she uses of her own daughters’ death four years earlier, like a Greek chorus,‘This was never supposed to have happened to her’. This was never supposed to have happened to any of our children. It was never supposed to happen to any parent. Those blue summer nights were intended to last forever.

But this did happen. It does happen. The nights darken. Joan, Vanessa and I are not alone. Quintana is gone. Natasha is gone. Jamie is gone. Endless children are gone in Gaza, Lebanon, Iran, Sudan – killed in conflicts for which we, as humanity, must take some responsibility. Endless mothers, and fathers thinking ‘this was never supposed to happen’. Endless excuses being created by mainstream politicians and media for the barbarous loss of humanity that makes the targeted killing of children and the unbearable suffering of their parents acceptable. Those of us who have known that loss filled with endless guilt and shame that we were unable to save them. Anger. Guilt. Shame. Usually in that order. Never far from the surface these days.

Blue Nights though is not only about loss.. It is also about the complex and contradictory ways in which we find ourselves facing that loss. What my one-sided conversations with Didion and her books have taught me (I note how briefly I felt able to call her Joan) is how important writing can be as a way of facing the unfaceable. From defining the impact of that cruel instant in which death changes everything to confronting the equally relentless and complicated fears that follow, Didion is ruthlessly and radically open and transparent. Not only in sharing her dread of memories fading away like the blue nights as her child disappears into the ‘nothingness’ she has always feared, but also the curtailing of the possible and foreshortening of the horizon that age and such losses bring. Her confession that she is terrified that turning seventy-five might be some form of cut-off point, despite discovering the ever youthful Sophia Loren is the same age, her acknowledgement that she cares about the physical impacts of ageing more than she might have anticipated, is increasingly afraid of falling and terrified of not remembering feels palpably brave. Our own mortality is, as she suggests inextricably caught up with the fears we have for our children from the moment they are born. Faced with their loss it as if those fears turn in on ourselves, forcing us to face our own vulnerability and frailty.

It was five years before Didion felt able to write about the death of Quintana. ‘Time’, as Didion notes ‘passes‘. While Quintana’s presence, whether hurrying off to school in her plaid school uniform, wearing leis and red soled Christian Louboutin shoes at her wedding, or wrapped in ICU hospital gowns flits through the pages with the luminosity of a firefly it is still difficult to have a complete sense of her. It is as if in accepting the chaotic and fragmented way that memories arrive Didion has had to let go of the precision, control and musical accuracy that characterises so much of her writing. She allows herself to voice her doubts that she might still have the capacity to write, while seeking possibilities to prove to herself she is wrong.

It is the messy hotchpotch that is our memories, along with her unadorned sharing of the questioning, doubts and fears that assail her after Quintana’s death, that I will take away from Blue Nights. And the need to remind myself of the mantra she creates to protect herself from self pity, unnervingly evocative of the credo by which my mother, toughened by her own hardships, encouraged us to live our lives:

‘Do not whine … Do not complain. Work harder. Spend more time alone.’

Postscript.

On the night of Jamie’s cremation in Mexico I asked family and friends to light a candle to see him on his journey. The other day I finally put the photographs people shared with us here on my thakla blog. The one above is from his sister-in-law Masya and her boyfriend.

Two weeks after his death we held a memorial service in a beautiful Wren church. We read Maya Angelou’s When Great Trees Fall, a young cellist friend played St Saëns The Swan, one of Steve’s young opera singers sang One Fine Day from Madame Butterfly and each of us in turn placed white flowers on the altar. A flower seller by London Bridge asked if something special was happening because so many people had asked for white flowers that morning. Friends of his and ours we hadn’t seen for years suddenly appeared on boats and trains from Paris, Amsterdam, Berlin and beyond. Later we shared stories, drank prosecco and, as so often seems to happen at funerals and memorials, laughed a lot.

Three months later I took the viva for my PhD. I asked that they didn’t tell the external examiner what had happened. I was afraid she might pass me out of pity. I unexpectedly loved our conversation, feeling suddenly present, alive and listened to in the most perfect of ways. Afterwards, as I waited in a soulless university room for the verdict, I wept. One of my examiners gave me a pin I had admired that said Free Palestine in Irish. Both gave me a hug.

Since then I find myself so often wanting to care for the person I am speaking to and to follow Didion’s mantra that I resist the tears. I cried out once while waiting for a plane the first time we went back to Berlin, where Jamie lived. Everyone, apart for a woman who was a nurse who came and instinctively held me, was terrified. Later the staff took me to one side before we boarded to ask if they should allow me on the plane as they were worried for their other customers. I promised myself I would do my best to stay silent.

Post postscript.
This week the 11th edition of Record magazine, an annual publication, came out. because it had not been published for two years, it had the final interview Jamie ever did. Discovering there was a magazine shop that stocked it locally I took a walk to buy a copy. Reading through the pages, of which I had seen an earlier version, I realised they had decided to leave all the little conversational fillers like the use of ‘like’ in and wanting to change that. I remembered then how often Jamie had sent me things he had written for the vinyl label or press releases to check whether it said what he wanted to say and if there were any mistakes. I also remembered Didion finding an old journal of Quintana’s after her death and being appalled by the fact she found herself mentally correcting the sentences.

Afterwards, sitting in a nearby Japanese café, a young woman came up to me to ask if I’d just bought the magazine because she worked in the shop. I explained why I wanted a copy and found myself telling her everything about Jamie and his life. She thought he sounded so similar to her own partner in the way he tried to realise his passions for music and art and wine and good food in his work. I told her about wanting to take out all the ‘like’s and we laughed about it being the kind of thing mothers never get out of the habit of doing. She promised to read the interview and I promised to revisit what had turned out to be an amazing store. We exchanged names before we left. It felt quietly significant that she was called Emilia. On the way home Blanche Dubois’ final line came into my mind.
‘Whoever you are, I have always depended on the kindness of strangers.’

‘We must be willing to let go of the life we have planned, so as to have the life that is waiting for us.‘

Small steps. I remind myself it took Joan five years. Small steps …

A rose called ‘At Peace’

ON MOURNING
‘Grief turns out to be a place none of us know until we reach it …’
Joan Didion

Joan Didion’s response to the grief of losing her husband of forty years The Year of Magical Thinking is the one book from my birthday library I have now read all the way through. The privileged and often rarefied life which Didion and her husband John Dunne enjoyed, which she chronicles with such elegance, can make it a complex and sometimes difficult read. It is so easy to compare our lives with others and find ourselves wanting. Yet there is something so compelling about the precision with which she shares the details of John’s death, wondering constantly whether anything the medics, the doctors or she herself did in response to his heart attack could have produced different outcomes, it is impossible not to be affected by the rawness of her grief. Nor to recognise the painful longing she has for some form of control. When she shares the detailed autopsy report which she receives almost a year late, having hurriedly written down an old address at the hospital, it is as if it is only in its irrevocability that she can finally find a sense of solace. John is gone and there is nothing she could have done to prevent it. ‘When something happens to me …’ as he had often said.

I read her account of resisting reality, of not being able to accept someone has gone from our lives with an aching sense of familiarity. Wanting to believe it might somehow all be reversible if we hold off acceptance for long enough. The boundless attempts at magical thinking. The unceasing wondering if there were ways we might have prevented it. If only I had done this … or said that. If only I had been afraid enough for him, remembered to rehearse all the things that could possibly go wrong that has always been part of me as a mother. If only I had warned him of the dangers of swimming in the sea as well as needing to be careful travelling around Mexico City. If only …

But life, is brutal. And, as Didion so frequently reminds us, it changes fast. In ‘the ordinary instant’.

A phone-call in the middle of the night. A silent scream.

Mother Courage Loses a Son.

Like Didion I constantly find myself needing to go ‘to the literature’ at those moments when I can find nothing to say. In moments of darkness that so often means turning to Brecht. I am not seeking out medical knowledge or clinical understanding of what happened as she is. There is no objective explanation for an accident of nature, or for the savage toll the sea can still demand of us. Instead I am driven by a longing to find that writer, or writers, who will have captured everything I am feeling but express it more eloquently, more poetically. A wordsmith who will speak of those emotions I no longer have the capacity to frame. A crafter of words who will help me make sense of myself and the grief beyond grief that enshrouds you when you lose a child. Even now I recognise that my impulse to share Didion’s thoughts and words, including the definition of writing that I have adapted for the title of this blog, is prompted by that need to find someone who has given voice to that which still feels unspeakable.

But The Year of Magical Thinking is not about the death of Didion’s child, Quintana. Although her illness and dramatic stays in ICUs beat their way through the book, like the syncopation in a piece of music, Quintana did not die until almost two years later. And that is another book. For me The Year of Magical Thinking has become as much about a marriage as it is about bereavement. When Didion speaks about that grief that ‘has no distance’ but ‘comes in waves’ she is not only speaking of the loss of the man who has been her partner in life for over forty years but of the unfathomable impact it has had on her. It is for this almost savage honesty that I find myself reading sections of it over and over again. As if, in describing her fear of indulging in what others might see as self pity or her loss of resilience, she is describing exactly those fears that colour the anticipatory grief and loss I have come to know over the past few years. Not, like Didion, as a response to a death that has become a reality in ‘an instant’ but instead to the slow, terrifying shifting of the ground beneath my feet that I have learned losing someone to a degenerative brain disease involves. Each day reminding me, with increasing resonance, of her explanation that as we mourn the loss of the person that was, we are also learning to grieve ‘for better or for worse, ourselves. As we were. As we are no longer.’

‘What is your Job?’ was the question on Improbable’s Devoted and Disgruntled equality and diversity monitoring form that prompted me to begin this blog. My decision to answer ‘writer, activist, carer,’ and qualify it with ‘not necessarily in that order’ was, I now realise, a first fumbling attempt to place my grief for the person that I was in the public sphere. I was probably as surprised as anyone to find myself standing up and drawing on it to make a passionate call for a session on the final ‘Day of Action’. The applause and the boundless generosity with which my suggestion that we might want to think how we could ‘Make More Radical Work with Old People’ which I prefaced with a description of my own situation, touched me more than I can say.

I am on a very different journey in my later years than I had ever imagined. I am having to accept that the person I was is ‘no longer’. The commitment we make in the marriage vows, as Didion reminds us, is to accept each other ‘for better or for worse, for richer, for poorer, in sickness and in health …’. I have become to realise this involves accepting ourselves in the same way. For better or for worse, we have to learn to grieve for the people we were, mourn the selves we are no longer and learn to care for the selves we are becoming. However tough that might prove to be.

The purpose of art is washing the daily dust off our souls.  Pablo Picasso

ON IDENTITY …
‘Identity is a never completed process of becoming…’
Stuart Hall

On April 4^th this year I turned seventy seven. Discovering that the number 77 is one of the ‘angel numbers’, a coming together of the 7s that signifies spiritual awakening, inner wisdom and a time for personal transformation I decided it should be something to celebrate. Which I did.

A few weeks after my birthday I found myself being asked to complete a diversity monitoring chart at an Improbable Theatre Devoted and Disgruntled gathering. Confidently putting my sticker at the top of the age chart (no-one superseded me over the three days) I noticed how much more hesitant I became when I arrived at the question ‘What is your Job?’

In the end I plumped for ‘writer, activist and carer’. After all these are the roles that take up most of my days these days. If not necessarily in that order.

Later in the day, a young woman in a group I’d joined about art and illness questioned whether she could still identify herself as an actor when her present disability meant she was no longer offered any roles. We told her she should absolutely go on describing herself as an actor if that was how she still saw herself. And that that was what mattered.

On my way home, I began to wonder whether we’d been too encouraging. Despite all our commitment to diversity and inclusion in the arts we still persist in identifying people by the paid work they do or who their parents were or the jobs they had.

Waiting for a check-up at the breast clinic the next day and being reminded how our physical conditions – in my case former mastectomy patient – overrides anything personal in these contexts, I found myself thinking again about the young actor’s concerns.  One of the forms I had to complete before seeing the consultant asked me to put down how many children I had.  I paused anxiously before I wrote down ‘two’.  Was that the right answer?  Did I need to qualify it by stating that one of my sons was dead?  Am I still a mother of two?  If our lives are changed irreparably by illness or loss are we still the same self?  Who or what defines that self ? I found myself returning to the definition of identity Stuart Hall offers us that I had referenced in my PhD: 

‘I came to understand that identity is not a set of fixed attributes, the unchanging essence of the inner self, but a constantly shifting process of positioning. We tend to think of identity as taking us back to our roots, the part of us which remains essentially the same across time. In fact, identity is always a never-completed process of becoming – a process of shifting identifications, rather than a singular, complete, finished state of being.’‘

I wondered whether Hall was right. Is our identity, our sense of self, something that will always be in a state of flux? Is it in fact a constant process of repositioning ourselves, shifting our identifications in response to the people around us, the groups we find ourselves belonging to – or no longer belonging to? Do those roots which connect us back to the parts of us that remain essentially the same across time have any part to play? Do those things that still feel so deeply part of me such as  coming from two working-class, migrant families, one Irish, the other Polish/Lithuanian, growing up on a council estate in Leeds in the 50s, being educated as a Catholic or becoming a teenager in the ’60s count for nothing? Are the experiences that resulted from those specifics, such as encountering feminism, discovering the pill, getting engaged with the anti-war movement not integral to who I am? Is the fact that I still see myself as a working-class Yorkshire woman even though I’ve lived in London for over fifty years simply a defiant need to cling on to something that no longer matters?

I know Hall is not suggesting that. No one is clearer than he is about the intersecting ways in which our class, gender, ethnicity, dis/ability impact our understanding of where we belong in the hierachy. What I think he is reminding us is that none of this need be fixed. Otherwise why engage in the struggle to bring about social justice and a less unequal and repressive world?

In the past years I have learned through necessity how my own sense of identity has shifted and transformed. Some of those re-positionings have been inevitable, like accepting the impacts of ageing, including the ensuing invisibility as a woman, and the resulting changes in physical abilities. Others have been unexpectedly cruel. Finding myself belonging to the group ‘mothers who have lost a child’ – Arabic is the only language that has a word for it, thakla, ثكلى – and then becoming a carer for a partner with a rare degenerative brain disease have ensured my sense of who I am has be radically re-wrought in the past few years.

Re-visiting and reframing my website has been a response to all this. While my work-self remains, I retain a certain amount of pride in what I’ve done and still do, it reflects my recognition that it is now intended as some form of legacy, and a space to share my thoughts and my writing. This Blog is therefore deliberately no longer about any jobs I do but an attempt to see what I’m looking at, face what I fear and find myself in the life I am living.

Of course it’s scary. But maybe the portends for turning seventy-seven were right? This is a time for personal transformation. And for finding ways to welcome, or at least come to some understanding with,  ‘the never-completed process of becoming’ that is offering me a new sense of who I am.

Postscript

As I looked through the small pile that had accumulated on the coffee table I asked myself what their choices might tell people about others’ perceptions of me. And to consider what I might learn about myself from them. The books were – Joan Didion’s The Year of Magical Thinking, Jill Burke’s How to be a Renaissance Woman’, Kristin Hannah’s The Women, Han Kang’s We Do Not Part, Rebecca Solnit’s Men Explain Things to Me and a collection of conversations between John Berger and Susan Sontag To Tell a Story. Stories about a long marriage and loss, female creativity, resilience and enduring friendship, a robust feminist riposte to mansplaining and a shared grappling with ideas about the art of writing from two of the best. I decided I quite liked the ‘me’ they reflected.

Since then I’ve found myself dipping in and out of these very different books. How to be a Renaissance Woman has become my bedside table reading, constantly awed by the mirror it holds up to our own society’s view of how women should look and behave. And if Berger and Sontag have become my daunting go tos each time I think I might write something, Solnit is there to remind me how effective the patriarchal culture can be in making women lose faith in our own capacity. In the same way she feels each book she has published has given her more faith in holding her space and being listened to I recognise the difference having Dr. in front of my name has made to the way I am listened to. Not that I am writing or saying anything very different to what I have always written or said but somehow the words seem to land with more weight. A young friend proudly texted me the other day to tell me she had been at a graduation ceremony at a London University college when she suddenly heard Dr Chrissie Tiller being quoted. She said she couldn’t quite recall the exact words shared but was certain collaboration, collectivity and diversity were among them. I decided I would take that.