Rewriting Trauma

Two and a half years ago, my life took an unexpected turn. After a long COVID-19 infection that left me almost bed bound for a month, I tried to rebound and get back to “life as usual” but every effort seemed to be redoubled with exhaustion, pain, dizziness, palpitations, and confusion. I kept pushing - returning to freelance and employed work, to all of the house and garden chores, to maintaining the allotment, to socialising… But it was like being immersed in mud, with the worst hangover I’ve ever experienced, every day. Still, I kept pushing, thinking this was just temporary, that I would get through, get better, be “back on form”. But over the four months that followed, with increasingly frequent crashes (that left me, at times, unable to even walk) I ran myself into the ground. What followed has been a relentless struggle with Long COVID ME. It's a condition, or cluster of conditions, that has drastically altered my daily life, and one that many people still don't fully understand.

The Daily Grind

Every day is a unique challenge. The constant fatigue is debilitating, and even the slightest exertion can trigger a bout of severe post-exertional malaise. I wake up at 2 AM, night after night, my body refusing to rest (perpetually overstimulated nervous system). Pain, a persistent and sprightly companion, dances throughout my body - headaches, muscle aches, nerve pain, eye pain, sometimes it feels as though my skeleton is aching. I experience, at times extreme, sensitivity to noise and light, which can make being outside or in public spaces overwhelming to impossible. It’s an interesting and entirely horrible experience, that sensory overwhelm, like 360 degrees of nails being dragged down chalkboards as someone gives an impossibly dry lecture on quantum mechanics that you are on pain of death to absorb and remember for a test which is happening yesterday… And then there’s the fevers, the orthostatic intolerance, the dizziness, the balance problems, the changes in my sense of taste and smell, the depression, derealization, and anxiety… 

The worst part for me, even beside the loneliness that physical isolation causes, is the brain fog, or Cognitive Dysfunction. I feel entirely unlike myself… My memory, which was always unreliable, has become completely faulty, words disappear like melting ice caps, and even simple tasks become insurmountably complex puzzles. The world around me often feels like a confusing, unmappable cacophony of sensory noise. I involuntarily check out in the middle of conversations, not out of choice but because my information processing engine has sputtered and died and I’m suddenly adrift somewhere… and i see it, in the faces of the people who are talking, when it happens: they become irritated, bewildered, or worst of all, judgemental. I’m deemed stupid, spacey, or disengaged. When in reality, I can’t control it any more than I can control the direction of the wind. 

It's disheartening when people say to me, "You look well." I know their intentions are good and that, in their world, it is a compliment to look well but those words clash so completely with my reality - with the invisible battle I face constantly, and everyday. Every social interaction, every text message exchange, drains my limited energy. The Iris you see on a good day (and you will likely only see me on good days or else high-masking average days) is just a glimpse of who I am. The majority of my days are marked by average or poor health, where cooking a meal or walking a short distance becomes a significant challenge. Good days take a lot of preparation: if I know I have a social appointment, a meeting, or something I need to be "OK" for, I have to take things very easy in the three-to-five days prior. And "very easy" from someone with chronic illness looks like a proper sick day for someone without. So, when I can't be spontaneous, accept that last minute invitation, please know this is why. Then, on the worst days, I'm confined to bed, a prisoner in my own body. Thankfully, I have fewer of those days now but the price of that is a life which is much, much smaller and quieter than anything I could ever have imagined.

Radical Acceptance 

I am such a long way from the person I was three years ago. It wasn’t even three years ago that I was getting married, dancing and singing all night, when I cycled every day, swam every week, gardened all weekend, hiked, made art… Now, most days, it’s good if I make it out of the house. Nowadays, I can get vertiginously dizzy and out of breath just taking the stairs. The cognitive dysfunction makes things like this (writing a blog) a mission which takes four to eight times as long as it would have three years ago and, when I’m finished, I know my brain will be of such a calibre of mush that the best I can hope for is a day of sitting without too much noise, light, or pain. And then there's all this internalized stuff I'm coming up against... Which is bitter and horrible but also, the truth. In how I talk about myself "then" vs "now" I can hear the spectre of ableism, fattism, and a script of "better is productive" and "a meaningful life is one of action". I have quite violent internal lights with myself, my inner critic, my inner parents and teachers. All the while, working bard to name, map and diffuse my inner alarm system. And I've become reactive. So reactive. I've always struggled with an amount of emotional whiplash from difficult encounters, with perceived and real attacks but that has been turned up to 11. Most days, even if I have the energy to get out of the house, I only go out at dusk and dawn to minimize the chance of my bumping I to someone (usually a curious or uncompassionate neighbour) and having that whole disaster cycle triggered, again. Because it now takes days, sometimes weeks, to reset. Maybe because my nervous system is in constant activation while I, simultaneously, don't have the tools I used to have available to me for processing (i.e. movement and creative expression).

In contrast to the drama, everyday I experience some degree of boredom, oftentimes to the point of exhausted frustration. On even average days listening to the radio or reading a book is only possible for up to an hour before I can't take anything in and the overwhelm hits. Most days I cry. Some days I think of ending it all. It has been very hard to have a sense of a future when you can’t work, are unsupported financially by the state i.e. can’t afford to live, when you are this socially isolated, and when all the things you were dreaming of are - on this health trajectory - impossible. When the things you used to do that gave your life shape and meaning are impossible (movement, drawing, socializing). And then, some days, there are these moments - glimpses - when I accept what is happening to me, when I forget the past and the future, and just for a moment, everything just is. Those moments might be the key to what will save me - moments of radical acceptance. They may be crumbs at present but perhaps a path of them will lead me out ofthe darkness…

The Unseen Struggle

Long COVID ME is an invisible illness affecing tens, possible hundreds, of thousands of folk in the UK today. It's a condition that often goes unrecognized, misunderstood, and dismissed. It can be a constant struggle, a daily fight for normalcy, for recognition, and for acceptance. I’ve had GPs roll their eyes, shrug their shoulders, as though I’m making it up. And yet, these experiences are real. I wish they weren’t. I spend a good majority of my time in brain retraining programmes, doing EFT, meditating, therapy, practicing DBT and yoga nidra, all to try and reregulate my nervous system, to get well again.  I yearn for a life free from pain, fatigue, and cognitive fog. At the same time, I know that change only happens once we fully accept where we are now. 

I hope that sharing my experiences will shed light on this debilitating condition. I’m sure there will be people you know, possibly you even, who are going through similar. If you would like to know more about Long Covid ME, there are a few resources I recommend. Let’s keep this conversation and awareness of Long Covid ME alive: 

The ME Assosiation - advocacy, information and support for people and their familiies living with ME and Long Covid: The ME Association - The ME Association

National Institute for Clinical Excellence (NICE) - Guidelines on the diagnosis and treatment of ME and Long COVID in the UK which can be very useful for getting both.

The Long Covid Podcast Long Covid Podcast Podcast - Apple Podcasts

‘You don’t want to get better’: the outdated treatment of ME/CFS patients is a national scandal | George Monbiot https://www.theguardian.com/commentisfree/2024/mar/12/chronic-fatigue-syndrome-me-treatments-social-services?CMP=share_btn_url

I have a sort of love-hate relationship with conferences. On the one hand, I always get swept away by the initial rush of excitement: a gathering of people, coming to exchange knowledge around a field we are all passionate about. On the other hand, for someone like me, the reality of conferences tends to be strange, isolating experiences dominated by academic, white, middle-class, cis people who speak a different language, with different values, and operate in a different world to me. Though I enter them full of excitement and curiosity, I usually leave feeling somewhat untethered, overwhelmed by theory and findings but bereft of community and thirsting for actionable, solutions-based approaches. I was delighted, therefore, when ORFC24 opened with a plenary of 10 speakers, all of them landworkers, from around the world, all of whom were extolling - in their own words and ways - action; solidarity; active hope; and calls for food, land, and sea sovereignty. It was clear from the outset this wasn’t going to be the ‘usual’ kind of conference (an abstract exploration of ideas and record of projects past) but a gathering of an international, multilingual, grassroots movement, rooted in an ethics of care and equality; working directly with the land on fairer systems of food and farming. 

During the opening Plenary, Charlotte Dufour from Conscious Food Systems Alliance (CoFSA) invited us all - speakers, volunteers, and delegates, in Oxford and online - to take a moment to connect with the land, with one another, and to set an intention for the conference mindfully. In a busy programme of 45 sessions, featuring over 150 speakers and a busy stream of projects, opportunities, and conversations inundating social media, this invitation felt like a precious opportunity to gather focus, mitigate overwhelm, and ground ourselves. Sat at my kitchen table, some 330 miles away from Oxford, I set my intention: to seek out and learn from those at the frontlines of the struggle for Land, Food, and Environmental Justice. It didn’t take long for my intentions to be realised… 

In the Thursday lunchtime session Colonised and Coloniser Transforming Relationships through Food and Land Stories Loa Niumeitolu, a displaced Indigenous Tongan, now living and working on Lisjan Ohlone Territory, California and Jessica Milgroom, a descendant of settler families, who grew up on Ojibwe reservation land in Northern Minnesota, held a conversation that aimed to “...break down hierarchies…to ask how we relate… how can we walk forwards together healing the wound of colonisation through food...” (JM). The conversation was one of honouring, compassion and bearing witness. As a white person living in the UK, for me it was also one of humility and unlearning: of coming to understand how our Western food systems are designed, founded and run on the violent displacement of indigenous people; the erasure of indigenous food systems; the severing of indigenous identity and everybody’s connections to the land. In some of her closing remarks Loa Niumeitolu invited the attendees to think differently about our identities and interconnectedness: “The sacred site IS the land… the land is an extension of our bodies… and we are all from indigenous people… we all have great great great grandparents who cared for, and stewarded, and loved the lands that we’re on…”. The session left me thinking about how it is people like myself can find our way back to our indigenous selves, to our ecological identities, and to the essential interbeing with the lands we live on. This conversation, conducted across the divide of coloniser and colonised, offered hope for how stories, conversations, and gatherings may start to unravel the systems of oppression and exploitation that industrial agriculture (aka the food arm of imperialist white supremacist capitalist patriarchy) extends around the world.  

On the Friday morning session Building a Global Peasants Movement: 10 Years of Land Workers’ Alliance (LWA) and 30 Years of La Via Campesina (LVC) we heard from Jyoti Fernandes, Morgan Ody, Chukki Nanjundaswamy, and Paula Gioia themselves all land workers, farmers, peasants and indigenous peoples from around the world working both at the grassroots and international levels to oppose the neoliberal programme of WTO whilst also building international food sovereignty and land justice movements. It was a moving and eye-opening session led by women who - though it was never named - are all doing the vital repair work of rematriation.

Chukki Nanjundaswamy (Executive Chairperson of the Karnataka State Farmers Movement and co-coordinator of the All India Coordination Committee of Farmers Movements) traced the history of La Via Campesina (aka “Our Way” in Spanish) from its origins to the movement today which branches almost 100 countries and hundreds of local and national organizations “...fighting all kinds of imperialist and capitalist forces… for the right to food sovereignty”. She described how LVC is organised from the bottom up, constantly learning and evolving from the experiences of its members and other allies including the decision to ensure men and women were represented equally and at all levels of the movement. “LVC is not just about denouncing what we don’t want but also about building hope…across all sectors of society”. 

Jyoti Fernandes (Campaigns and Policy Coordinator for the Landworkers’ Alliance) described “the family” of LWA, itself a member of LVC, and her reasons for co-founding LWA in the context of the UK where inequality and access to land have been yolked since the time of the enclosures. She explored the organic origins of the movement from pro-nature, anti-GM protests; to creative expressions of hope, solidarity and resistance; a shared belief in rights for natural home building, self and community sufficiency, and a collective realisation that “...there was this huge network of unorganised people… the neo peasantry returning to the land… and smallholder farmers… all facing evictions … and struggling to survive in the face of the neo-liberal paradigm the UK government was pushing onto farming…”. She described, with infectious joy, how LWA now regularly consult with DEFRA who recognise that LWA’s impetus of “Matching food production with biodiversity and looking after the climate…” is in everybody’s interests. 

Paula Gioia (Facilitator of the Smallholder Farmers Constituency in the Civil Society and Indigenous Peoples Mechanism - CSIPM) talked about the intersectional work members of LVC had to undertake to develop a movement of radical change “… to fight against Capitalism and to fight against Patriarchy…this begins with self-reflection: how we reproduce Patriarchy in our daily lives… and this self-reflection begins with space… ” They described the women’s strike at of 1996 in Tlaxcala, Mexico during the 2nd International Conference of LVC in, which challenged the dominance of men, patriarchal ideas and attitudes in the movement whilst demanding; acknowledgement of the role women play in agriculture, farming, and society; 50 - 50 representation of men and women at all levels of LVC; a campaign highlighting and fighting violence against women and; the creation of spaces - now women’s assemblies - necessary for women’s ideas and voices to be supported by, and come forth through the movement.  

Morgan Ody (General Coordinator of La Via Campesina, member of Confédération Paysanne and of the coordinating committee of ECVC) wearing the Palestinian keffiyeh around her shoulders spoke with clarity and passion about LVC's global accomplishments:  

“… it is still illegal to crop GM crops in Europe, we fought for that… In Columbia, LVC is one of the main guarantors of the Peace Agreement… We have been the first to call for food sovereignty and now everybody is calling for food sovereignty…We have been pioneers of peasant feminism and now peasant feminism is growing everywhere…  We have been able to negotiate the UN Declaration on the Rights of Peasants and other people working in rural areas (UNDROP)...”  But Morgan’s talk didn’t end in the past, she spoke about how, in the face of multiple overlapping global crises, LVC offers alternative ways of being, of hope, of solidarity now and going forward “...Peasants…and all who are taking care of Mother Earth are the future...”. 

She expressed grief and horror at the genocide happening in Palestine and the complicity of governments: “This is not acceptable and as La Via Campesina, we stand against this barbary, we stand for human values, we stand for human dignities, of whoever, of women, of non-binary people, of people whatever their religion or the colour of their skin. We are equal and we are equal in dignity...” This was a powerful reminder that land and environmental justice are inextricably intertwined with social justice and that we are all responsible for decolonising ourselves, for calling out and resisting imperial violence and oppression, wherever it happens in the world. But this session also spoke to how we are all responsible, not just for fighting the old, but also for cultivating the new: through solidarity, active hope, compassion, and creativity. As Morgan said in her closing comments “We are all responsible...for building a culture based on human rights and equality, intentionality, solidarity, and cooperation.”  

The session was bookended with calls of “Viva La Via Campesina! Viva!” 

In reflecting on these sessions of ORFC24, I started to think that healing is not the same as forgetting, but equally, it is not about flagellating ourselves or one another with past and current traumas - healing comes when we slow down, take time to sit with the pain and discomfort, to listen, learn,  notice, and accept. This applies to ourselves, to those we have harmed, and to everyone (humans, land and more than humans alike).  What both these sessions taught me is that when we share space and stories, when we listen deeply to one another and bear witness with compassion and empathy, we slowly start to arrive at a new understanding and to do the slow, gentle work of cultivating regenerative cultures based on reciprocity, healing and solidarity. 

What I didn’t expect to happen as a consequence of volunteering at ORFC24 was that I would go away from the conference knowing more about myself…As someone who grew up in the English countryside but with no rights to access (we were a poor/working-class family living on a former miner’s terrace, surrounded by Grouse Moors and a large, tenanted estate) my relationship with the land was schismatic: though I felt a deep connection with the fells, moors, and rivers, I was also - according to the farmers, landowners and agents - an outsider. Worse, I was an illegal trespasser. I was surrounded by land which felt like home, like an extension of myself, only greater, deeper, older, more complex, more loving than I could comprehend. And yet, if caught swimming in the tarn, making dens on the fells, walking on the moors, or trudging through the heather, I would - at the very least - be shouted at and oftentimes, be warned away by the crack of shotgun fire. What ORFC24 and the incredible speakers made me realise is something that has taken me 30 years of unlearning to only start to understand: the necessary return to the land, the rediscovery of land-based life, something that I always yearned for but could never allow myself to imagine is not just a fantasy, it is a right. Listening to speakers on colonized lands, to those displaced by colonization and capitalism, to the LWA and LVC, I started to understand the violent inequality at the heart of our UK land and food systems. These speakers helped me see that I have the right to be on and with the land. Because there is no separation between us. I have always known, since I was a child, that myself and the land are one and the same, it was just educated out of me by our systems of inequality, land ownership and education. What the speakers at ORFC have helped me see is that my healing, and the healing of the land, are not separate but wholly, inextricably intertwined.  

So now, to begin again, with gratitude and humility… The work of reconnecting and healing all our wounds… 

Viva La Via Campesina! 

Viva!

Iris Aspinall Priest, Tyne Valley

10.01.23

After a while, maybe it was 6 months, maybe 10, or maybe just recently, 15 months since I first got ill, I started to feel something I havent felt before... First, it was pain. Not a specific pain but a pain that runs about in my body like a wild fire of nerve endings. Pain in my legs, my feet, my hands, my head, my fingers, my eyes... pain in parts of my body i'd forgotten or had barely registered were there at all. Second, was this feeling of, how to describe it, being half dead? This feeling is less of the body and more of the world, the social, the interbeing: when I get messages from friends telling me about their holidays, adventures, accomplishments, or even the rare occassion when I get to spend time with people and they talk about all they've been doing... I feel like I'm only half with them in the land of the living. The other half if me is underwater, in the cold earth, dead. When people ask me what my plans are, I don't know how to say (without feeling like a failure, an abboration) "I can't make any plans. Everything depends on the pain, the energy, if I can get out of bed. And besides, I have no money."... I've watched a year go by in which people have moved house, made great art, been on tour, recorded albums, written thesis, books, and poetry. Pwople have grown gardens, had babies, changed jobs, been on protests... And the best I can say, for a year of my life (15 months in fact), is that I didn't completely die. Since November 2022 I haven't make anything, been anywhere, achieved anything. I haven't made any money, spent any money, made any art, written any stories, I haven't danced, swam, cycled, run, jumped, or cartwheeled. But, for 15 months, I managed not to die. And somehow that has to be enough.

Hardly polite dinner conversation.

"Things will get better" my partner keeps telling me. And yet, time passes, and as it does the further away from life and the world I feel, and the less I am able to believe these words. While my friends and peers have holidays, make babies, create great works of art, build lives together, I sink further and further away from a life of meaning, purpose, or connection.

Last year, at about the time my father died, we got the letter from DWP to say I was turned down for financial support because I didn't have enough medical evidence. This is a bitter pill when you're suffering from a mysterious illness that doesn't have a test to show it exists. When you read back a report of your life, according to an evaluator, which does not look like your life at all. "I have deemed that Iris can cook a meal from scratch... I have deemed that iris can carry out every day tasks unaided..." etc etc. This is harder still when we have almost no medical support (a failing GP practice who you can't get an appointment with for 3 months and a very long waiting list for the CFS service).

For those of us who are working on the healing of deep wounds, particularly those wounds from childhood and our formative years, we might find ourselves at times stupefied and devastated at how our seemingly solid present can be demolished utterly, and in a moment, by something minor, even something we wanted. For me, this week, that happened not because I was exposed to something bad but to someone genuinely good and nice. Unfortunatley for them, and for me, they are someone from the past whom my unconscious and nervous system connect with a world of trauma: A time in my life when I was utterly trapped, powerless, abused, neglected and rejected on multiple fronts - by my parents, my peers, and by the other would-be caregivers in my life (teachers, health professionals, neighbours, other family members).

Last night, the night after this person left our house, I had this dream that I was trapped in a world of vampires. The panic, the overwhelm, the desperation, and the fear were so real. It wasn't a dream, though it was a dream scenario, it was a lived memory (albeit with vampires). I woke this morning in a pool of sweat, fighting my way out of the bed but with this phrase in my head "When you are groomed for death, you live in a world of vampires".

When you grow up in trauma (and in our world today, that's most of us) we are primed to see danger everywhere. We are triggered by social media posts, the tone of someones voice, a poorly judged message from a friend, the sound of the kettle, the appearance of someone from the past, and all kinds of other everyday occurrences. The person who came to stay with us was not a vampire, but being from the past and specifically from what my traumatised unconscious interprets as a world of vampires, they brought with them the key to that world.

Until my current relationship my approach to dealing with this was to burn all bridges I.e. all routes and connections back to the past. A 100% scorched earth policy. I even remember once, I was walking up Grainger Street in Newcastle on my way to work when I saw someone walking towards me who I hadn't seen from school (almost 20 years previously). Before I had a moment to even think their name, my feet had turned 90 degrees and I was running to the other side of the street, narrowly avoiding an oncoming bus.

For better or worse, I am - geographically speaking - not far from my old world of vampires and my husband also came from that world - he has friends and family from it. So, unless I get super rich and can run away to another country (dream baby dream) i am stuck with this proximity to the past and to the spectre of vampires. So what can I do? How can I live (more, thrive) in the present whilst also navigating the destabilising influences of people from the past? I genuinely don't know or have an answer to this. So please, if you're reading and have some ideas - please comment below or DM me.

For now, though, I'm going to make myself a vampire invisibility cloak and plant some garlic cloves in the garden....

With love and solidarity,

Please be advised- this post discusses experiences of sexual abuse and childhood sexual abuse.

***Trigger Warnings***

It's like a gross, oily monster who lives in and on you - translating every word and interaction into something darker, more sinister, undermining of your self hood. At night, as you drift off to sleep, the monster drops filthy, oozing piles of the stuff from the ceiling - spattering your pillow with unpleasant moments from your past, words spoken or written, now embalmed in the suffocating slime of it. It ties you up in oily knots, prevents you from leaving the house. It turns small things into world-ending events, it sucks you in to the bog of eternal stench, it haunts your dreams, nightmares, waking world. It tells you it knows you, it sees right inside you: it knows that you aren't good enough, that you don't deserve anything, that you will never amount to anything. It is quick to tell you how you don't measure up to your peers, to expectations, to standard. Sometimes, it wells up and bursts forth like a geyser: You may be doing something banal and everyday like taking a shower or putting away the laundry when suddenly it's choking you, bursting out of your mouth, filling your vision with oily darkness. My partner has learnt to identify those moments when shame spontaneously explodes "out of nowhere you squeak or make little animal sounds" he tells me. It's the sounds of a small person, a child or an animal, drowning in it.

...Just watching this on repeat until my legs start working again...