Category Archives: chronic pain

The Mother Wound

Posted on by under chronic pain, feminism, history, life, memoir, Uncategorized

In my parents’ bedroom in my childhood home was a brown, metal filing cabinet. It screeched terribly when its stiff drawers were pulled open and heaved with the many documents Mum thought it necessary to keep (she had a very high threshold for throwing anything out, if the overstuffed nature of this filing cabinet was any guide). In this filing cabinet was the paper trail of our family: bills, receipts, passports, certificates. Sometimes, when I was of an age old enough to be left home alone for short periods, I would ransack this filing cabinet, scouring for evidence that I was adopted. I imagine most children at least entertain the notion. The evidence for, in my case, was my dark hair and green eyes in a family of blue‑eyed blondes, parents old enough to be my grandparents, and a sense of alienation from the people whose pictures huddled on shelves and hung from walls and who I was told were my family.

This alienation was simply a sad product of time; I joined the party too late. My maternal grandparents died before I was born. My paternal grandparents passed when I was young. My mother had only one brother and my father was an only child, and the few cousins and second cousins I could cobble together into an extended family were far removed from me in age and geography. I would stare at the pictures of people whose names I knew but whose stories I didn’t searching for any likeness that would form a tether between us. I didn’t find any. But neither did I find any adoption papers.

*

I am often asked about my family history. There are two reasons for this. The first is my unusual surname, which, when enquired about, unlocks the dramatic story of a family who escaped persecution by fleeing across empires and continents for antipodean safety. The second is because I talk to doctors a lot.

At 22, I was diagnosed with an autoimmune disease, a form of degenerative, inflammatory arthritis. Family history is one of the diagnostic indicators of this disease, and suddenly, what I had in common with my ancestors became very clear: autoimmune arthritis. What’s my family history? A matrilineal line of pain. A great-grandmother, grandmother and cousin, all with Rheumatoid Arthritis. A connective tissue disease, forming the connective tissue between me and women who are names, and faded photos, and, in many ways, define my life today.

I didn’t want this to be my family inheritance. With each doctor, with each temptation of a new treatment that might help, I would be asked, “and what is your family history?”. And my answers would be intersected with uncertainties and hesitation because I didn’t know the people whose experiences were now so relevant to my own, and I didn’t think to ask, because I didn’t want to engage with my pain – with my difference – any longer than I had to. I just wanted to get on with life.

My cousin, the one surviving relative with lived experience of my reality, reached out with kindness, sympathy and suggestions. But, in these early days, when I was wrestling against rather than living with my disease, I couldn’t accept this connection, the way I might have if it was the outline of a familiar jawline I could trace in a photograph. And, perhaps, I couldn’t yet confront that her present – multiple surgeries, organ transplants, replaced joints, a body wracked by decades of heavy medications – might be my future.

*

There is an idea in psychology that suggests that women inherit the pain of their mothers; a burden passed through the generations, born of surviving in a society created by and for men, of being denied matrilineal knowledge and support. It describes the struggle that exists between mothers and daughters as the former tries to keep the latter safe, as the latter tries to find expression in a world that wants to keep her small. It is called the Mother Wound.

I bear this Mother Wound. But I also bear another wound passed from mothers to daughters in my family for at least three generations. My Mother Wound is what connects me to my family, and anchors me to the women I don’t know, for their stories of pain, of resistance and resignation, are also mine. And, as my resistance has shifted into acceptance, I have begun to search for the women who I know understand what I’m going through.

*

My great grandmother’s name is Martha. When my mother talks of her life there is nothing tangible for me to grasp. I smell dust and see sepia. It’s too remote, a life that began in 1870 and ended the year King George VI died. But – when my mother talks of a woman whose life gradually closed in on itself – I see her. I understand.

Martha didn’t leave the house in five years. Towards the end of her life, Martha’s Rheumatoid Arthritis prevented her using stairs, so she retreated to a life lived on the top floor of the family home. There was no life for elderly, infirm widows. She just withdrew. Her life was just isolation. Martha didn’t leave the house in five years.

There are days and weeks where my pain keeps me on a leash that allows me to shuffle only from my bed to the bathroom. I become anxious and desperately lonely, and home becomes both respite and prison. My social media usage spikes during these periods as I send cyber flares seeking company, seeking that I not be forgotten. Outside seems a very long way away, on these days. Martha didn’t even have a telephone.

My grandmother’s name is Ormey, but in the family storytelling she’s always been called Mada. She fought against her condition, Mum says. It overwhelmed her. She was subjected to every new treatment: injections of cortisone, injections of gold, being encased in hot wax, powerful drugs with terrible side effects. She refused a wheelchair, saying she’d drive it down the stairs with her in it, so my grandfather would instead throw her over his shoulder and carry her, if he had to.

Mada loved reading, Mum says. It was her only joy, really. Mada would sit on the front veranda in a cane lounge with her romance novels and the dog that loved no one but her. But then the drugs made her eyes dry and clouded but she didn’t want to make a fuss and by the time she did make a fuss her cornea had ulcerated and she lost vision in one eye.

Mada absolutely loved shoes, but the arthritis warped and twisted her feet until she was unable to fit into normal shoes and it broke her heart to buy ugly, open-toed shoes. She worried that people would stare at her feet so she didn’t like going out.

Her last years were a blur of surgeries, pain, isolation and doctors who wouldn’t listen, wouldn’t empathise, who would just write scripts and send her out the door. Except Dr Morgan. Dr Morgan had a thick Scottish burr and a way of making Mada laugh. At the end, when she weighed only 25 kg and was on so much morphine that she saw brass bands marching up her hospital walls, Dr Morgan let her choose how her last days would be spent. She chose lucidity – and with it, pain – so she could talk with her family until the end.

The woman in the photo with the sad eyes and thin smile is alive to me, now. I too have tried everything because, without cure, management is the only option. But I too have gulped the pills only to compound my problems with complications and side effects. I too have writhed against the realities of my condition, clinging to a memories of a life without boundaries until my body collapses; wearing pretty shoes that make me taller and match my outfit because that act of resistance, that shred of my old identity, is worth more than the pain I will endure in payment.

My cousin’s name is Helen. She is radiant and smart and cheeky and irresponsibly adventurous. And she doesn’t want to talk about the past, she just wants to live. It is her story, and I wonder if one day we might find a way to exchange our fragile truths to one another. But I do know that to think for too long about the darkness – the life that was or could have been – risks being swallowed by it. So, in not talking about the past, my cousin shows me how to live. I have realised that if her future is indeed my future, it promises joy and survival and success by every measure.

My mother feels guilty because it is through her that I have inherited the family arthritis. She doesn’t articulate this, but I can feel it. What she does say, often, is that she wishes she could bear the pain for me, or take the fatigue away. I don’t have much capacity to indulge alternate futures, and I don’t see that blame or regret would bring me any relief. But my heart hurts for her: she nursed her own mother in those final, tortured years and now she fears for me. I know she feels helpless. Strangely, this has softened me towards her. I indulge the soup that appears unannounced in my fridge, the daily texts, the frenetic attempts to find better treatments because I know she is doing all of this because she can’t bear the Mother Wound for me. Her burden is watching those she loves most suffer, and that, to me, would be the most unbearable pain.

*

A family’s history is not just names and dates, connected by thin, black lines. It is the colour and shadow that these charts can’t capture. It’s that my grandfather would hoist my grandmother over his shoulder and carry her, her petticoats flying and legs kicking. It’s that my great grandmother lived in a world with no space and no time for an elderly widow who dragged her leg as she walked. It’s that I couldn’t see where I fit into the familial gallery until I knew Mada loved shoes, and dogs, and reading, and had an inflammatory autoimmune arthritic disease. And it’s that my family history includes a Mother Wound that connects strong, resilient women. These are the visceral stories that link me to a family I never knew. And they can’t be found in a heavy, brown filing cabinet.

 

This essay was Highly Commended in the E. M. Fletcher Writing Award (for writing on a theme of family history) and was originally published in The Ancestral Searcher, Vol. 42 No. 4, 4 December 2019. 

I Hate Yoga: A Diary.

Posted on by under chronic pain, culture, life, Uncategorized

A version of this essay was originally published in Womankind Magazine (Issue 20, May 2019). The full essay is published here. Writers were invited by Womankind to complete five days of daily yoga practice and record a diary of their experience.

Day 1: I hate yoga.

Yoga conjures in me such a visceral reaction that Womankind’s challenge intrigued me: could I find out what lay behind this anger?

After some gnashing of teeth, petulance and prevarication, I haul myself onto the floor and follow a yoga flow practice sourced from the internet. My Labrador’s fur, until now seemingly irrevocably embedded in the carpet, suddenly coats every inch of me and is distracting my inner calm as it travels into my nose, eyes and mouth. I’m frustrated, annoyed, uncomfortable and bored. Every joint is crying. I hate yoga.

 

Day 2: “You should be doing yoga.”

In this phrase lies the probable cause for my yoga rage. For over ten years I have been managing an aggressive, incurable form of auto-immune arthritis. I have tried yoga a few times over the years (and yes, tried properly by practicing a few times per week for months at a time). I have tried everything you could possibly suggest to me. And I have found what management techniques work best for me – medication, reduced work hours, diet adjustments and running. But still, yoga is the ‘silver bullet’ most frequently, didactically and condescendingly pressed upon me as something I “should” be doing. And, because I’m stubborn and contrarian, this guarantees I won’t do yoga.

Except today, because I said I’d do this challenge. I roll around, begrudgingly. And I notice, begrudgingly, that my tight muscles and painful joints breathe a little easier afterwards.

 

Day 3: My arthritis pain is bad today and I’m nursing interior emotions that are jangled, broken and delicate. The last thing I want to do is be present in my body and risk feeling this pain more. I also can’t control my brain’s wanderings. Today’s yoga session leaves me disjointed and anxious, so much so that I go for a run to recalibrate myself.

The only time I find stillness is when I can drown my thoughts in music accompanied by the rhythm of my footfalls, when I exhaust my body so much that I can only focus on forward movement. Emotional and physical pain wait for me when I am invited to be present in my body so existing in a state of distraction and abstraction is my solution. I am scared by what yoga might ask me to find.

 

Day 4: Today, yoga continues to ask me to do things that I find almost impossible. Not physically, but intellectually. When my teacher gives an option for a stronger pose, I take it. I shouldn’t. I have to fight my own competitiveness, my own desire to be top of the class, and acknowledge that the softer, gentler option is what I need today (and maybe far more often than I allow).

I’m observing the women – for they are all women – who are apparently finding bliss here, while I can’t. We are all white. I am troubled by the appropriation of yoga into something very white and very privileged and very bound up in consumerism and exclusion. I am repelled by how some people portray yoga in social media: faux-spiritual, indulgent, costumed, performed. As a disabled person, I notice how inaccessible the spaces and practices of yoga can be. I see this yoga as very disconnected from its history, culture and intent and I want to see more white Western practitioners engage thoughtfully with this and differentiate themselves from a type of yoga that has become branded and exclusionary.

But I also know, truthfully, that my ego is bruised. I feel as though I’ve tried to part of a clique and I’ve been rejected. When people give themselves over to yoga, when it becomes such a core part of them, I find myself wondering what it is that they’re craving. Why do they get it and I don’t? Is it me that’s missing something? Or them? Or yoga?

 

Day 5: I don’t like to admit this, but today I find myself creating moments of yoga-esque movement and groundedness. I’m moving into my joints: slowly, gently, waking them up with tenderness. I’m noticing when my heart races and my chest is filled with fluttering birds and I drink in deep breaths and feel safety and lightness return. I clamber down onto the floor and end up lying still, able – for once – to hear my body’s call to move only as much as it takes for my steady breath to gently touch each swollen joint.

It is not for me to determine the nomenclature with which this should be labelled. It doesn’t need to be. It’s just intuitive rolling around; a time to find stillness and listen to – rather than escape from – myself. For me, there will be no #dailypractice, but I will try to keep treating my body and mind with the gentleness I’ve found in these past few days. Maybe then I can

My Super Mum and Her Super Foods

Posted on by under chronic pain, life

I am nearly 30 and my mother still cuts my fruit up for me. In this sentence is everything you need to know about our relationship. Indeed, it’s only twelve years since I discovered that mandarins came with pips in them. Mum used to carefully remove them before placing the fruit on the table. It wasn’t until I moved out of home that I discovered the horrible truth that I would have to extract my own mandarin seeds. That’s the first piece of background you’ll need today.

The second thing is that I am extremely petulant. When I’m told in hyperbolic extortions that I MUST watch [insert popular TV show here – yesterday it was The Wire] I instinctively reject the entire show (whilst simultaneously being so evangelical in my need to get everyone to watch Outlander that only my gender and lack of tie distinguishes me from Mormon proselytisers). My ego is so fragile that I want the discovery for myself, and the knowledge that my taste is a little outside the norm.

So combine extraordinary maternal devotion and a daughter’s petulance and you might go some way to understanding why I am nearly 30 and having regular arguments with my mother about not wanting to try new foods.

You see, my mother is on a quest to single-handedly cure my auto-immune disease. Growing up, our family debates demanded you brought peer-reviewed sources to accompany your statements. “I heard on morning television” would earn a red card straight away. Yet, when it comes to miracle foods, my mother – through a fog of love and hope – will take a punt on the word of everything from New Idea to New Scientist.

The foods I might have been happily eating one moment will become ruined the second I am told about their designation as a super food. That’s when I turn into a toddler.

Every couple of months, a whisper of incredible results! pain gone! cured! thanks to eating certain foods will reach my mother’s ears. From there, it is a very short trip to my fridge. It starts with carefully clipped columns earnestly pressed into my hands. Then starts the “you should eat…”, then little parcels mysteriously appear in my fridge.

Here is a non-exhaustive list of food that has elbowed its way into my fridge:

  • purple vegetables
  • apple cider vinegar
  • raw honey
  • kimchi
  • blueberries
  • kale
  • yoghurt
  • turmeric
  • ginger
  • fish oil (not capsules – which aren’t powerful enough, apparently – but oil that I was to drink which had lime flavouring that couldn’t possibly outstrip the horrible oily fish taste so just left the most vomit-inducing strong, acidic fish taste. And swallowing oil is awful)

Kimchi was my favourite.

Mum: I’ve just read about how wonderful kimchi is for inflammatory conditions

Naomi: yes, that’s because it’s a fermented vegetable and like sauerkraut (which I eat a lot of) it has pro-biotics that are good for gut health

Mum: (ignoring me) it’s fermented spiced vegetable dish…

Naomi: I know. I’ve had it often. In fact, I had it on my breakfast burrito last week.

Mum: … like a Korean sauerkraut.

Naomi: Dude. I know. This is not a mystery to me. I quite like kimchi.

Mum: SO I’VE PUT ONE KILO OF KIMCHI IN YOUR FRIDGE THAT YOU SHOULD ADD TO EVERY MEAL.

Naomi: I’m never eating kimchi again.

We are currently in the Age of Turmeric.

Mum’s efforts aren’t limited to food: every week I’m goaded to try meditation, try yoga, try mindfulness, try try try try. But every day I’m trying. Trying to get out of bed. Trying not to let pain and immobility and fatigue and sickness stop me from living. Trying to do all stretches/exercises/planning/resting that might mean I get through a day without collapse. Being told I should try harder, try more is soul-crushing.

My petulance is a protective mechanism against the fact that so far the only impact of a diet high in something has been mildly interesting wee. I need to not be disappointed every time something doesn’t work. If I were, I don’t know how I’d have survived nearly a decade of gradual declines, of failed trials. Not getting my hopes up is very different to giving up hope.

Mum knows this, but we continue to play our merry little game. Why? Because Mum is devoting to her cause – me – the energy, attention and positivity that I have lost. Because Mum is doing the hoping for two. Because I know her desperate attempts to do something are driven by the unbearable impotence of being unable to help. And, in return, to her I devote a grudging willingness to try. Even the bloody fish oil. Because I see her pain too, I see her efforts as the parcels of help and love that they are. Because I would do the same for her. Because one day they might decide that a nice shiraz and cured meat are the next cure for everything. Because I love her, and know she loves me.

And because I am nearly 30 and my mother still cuts up my fruit for me.

Breaking Up With My Past Self

Posted on by under body image, chronic pain, life, memoir

To be given a diagnosis was a relief.

“Are you certain?” I asked.

There can be no doubt. The fusing of your sacroiliac joints is clear to see. She continued to discuss treatment but I was suspended in that moment of certainty, of being believed. For two years, as pain wracked my body, so severe that I would lie screaming silently to myself with hot tears leaking from clenched eyes, specialists had told me they couldn’t find anything wrong. I had taught myself to brace for further disappointment, yet here was an answer. An autoimmune disease, a form of arthritis. Connective tissue hardening and fusing my joints together. Ankylosing Spondylitis.  A word I’d always need to check the spelling of. But I was only 23. Now I had an answer I could resume living life.

**

Are you in pain now? My bikini waxer asked as she spread hot wax in my most intimate areas.

The answer was yes but the question wasn’t as daftly obvious as it appeared.

I am always in pain.

**

I could adopt a guise of normality at first: slamming back the pain killers at night to sleep, slamming back the double-shot espressos in the morning to rid myself of the druggy veil. But then the disease struck my most vulnerable spot. My body

Medications conspired with reduced activity to quickly dump thirty kilos onto my small frame. I was so enraged and humiliated by what my body had done to me: not only was it sabotaging me from within with fatigue and pain, now it was turning me into a grotesque joke.  It was a traitor and I hated it.

Women are taught that investing in your body with exercise and diet are signs of self-love. We are taught that our sexual appeal decreases as our size increases. Here I was, flabby, soft, bloated and married to an athlete. We chose each other when my fat was appropriately placed and thus considered ‘curves’. How could I believe his claim to find me attractive? Compounding this was the ever present duo: pain and fatigue. He wanted to help. He saw my agony and felt helpless. He wanted to hold me but the pain wouldn’t allow even a gentle touch. Our roles melted from lovers and partners to patient and carer.

**

Life is measured in numbers

Weight.

Income.

GPA.

Who am I now, if my identity cannot rest on the certainty of success that these numbers gave me?

**

The next blow was to my social life. A day at work left me too exhausted for midweek plans and weekends became closely protected and utterly necessary recovery periods where I yielded to the fatigue and sleep. If an invitation was accepted, odds were I’d need to cancel at the last minute – body winning over mind. If I went, I’d pay for it with days of pain and tiredness.

I became so guilty. I missed so many things. And so few friends understood. I could look so well. They didn’t see the collapse that followed. Many, many friends drifted away.  Those who didn’t, those who understood without being told, those who checked in with compassion, who never forgot me in my prison – those friends are my strength.

**

It feels like my spine is made of something rigid. Wood that I’m trying to coax – through stretches, through diet, through aggressive medications – into yielding and moving like the myriad bones in my back should. Around this wood I am tender, bruised, swollen. This is the pain that is my everyday – my normal – that makes me come across as though I’m always slightly pissed off about something.

Sometimes, the pain screams. A crescendo through my whole body, intensifying from dull ache to sickening shock. Pulse after pulse. A knife twists in my spine: cold, probing metal, finding bone, pushing further in, twisting.

I try to find reason when it’s like this. How did I bring this pain upon myself? Did I overdo it at work? Overdo it at play? Not exercise enough? Exercise too much? I won’t sleep. I won’t function. I sweep my diary clear as I brace myself for days of stubborn recuperation. I will pay for this ten times over.

**

My body is at war with itself. This is a truism of an auto-immune disease. But my body is also at war with my Self. I must resist starting each sentence with “I was”. I was a gymnast. I was a soccer player. I was thin. I was a pianist and a singer and a performer and a burst of energy and a friend and… I had ambition.

For three years I fought the reality that shoe-horning myself into the ‘normal’ professional environment was headed for disaster. I hated disappointing anyone – my colleagues, my bosses, my parents who were so proud of my academic and professional achievements. I was the type whose bedroom dripped with medals and trophies, whose life was propelled forwards by a singular drive to ‘do my very best’.

And here I was, starting each day with a plea that my body move (that’s step one) then begging the pain to recede. Then battling the constant fog of pain medication and heavy fatigue to do a job that relied on a quick and curious brain. I tried to keep going. Everyone tried to help me. But eventually, I just couldn’t be relied upon. With deep shame, I confronted my failure and my professional persona – so integral to my idea of who I was – collapsed.

**

I sit across from another version of myself. She looks cool and together, and her armour is cropped blazers and pearls and pencil skirts. This is it, she says. The dream, the pinnacle. And now you’re going to fuck it up because you can’t hack it? Do you know where I could go? Who I could be? What my life would be like? I am on the cusp of the world and you’re offering me a little life of brushing crumbs off my boobs.

Yup.

Who am I without this job though? Without the clothes? Without the comfortable descriptors? How do I explain my availability, my free time? What do I write in occupation when ‘inert t-shirt covered in food stains’ is how you propose I occupy my time?

I wave my hands vaguely. Alternate Naomi, with the vision and ambition and capability, slips through my fingers.

**

Over the years, because of the implications of my disease and medications, doctors asked when I might want children. I would pluck the number 28 from my arse – to defer the question as much as anything. It sounded suitably old: an age by which I would have established life on its awesome, adventurous trajectory and be ready to create monuments to my awesomeness in tiny human form.

It started well:

Career at 21.

Married at 23.

Owned a home at 24.

Then the wolf came and blew it all down.

Amidst wreckage, however, we have the opportunity to rebuild.

At 29, I am breaking up with who I was.

Like most relationship breakups, this one is drawn-out. I’ve been sitting in the wreckage for some time, trying patience and compassion and listening, instead of fighting. With tearing effort, I remind myself that Past Naomi wasn’t perfect: she hadn’t found her empathy or sensuality, her confidence or creativity. She was smart, but she didn’t have wisdom. I like these things about Now Naomi.

I have stopped fighting against the monstrous waves that have battered my body and mind for eight years. I have stopped thinking that mimicking an idealised, created version of myself is proof I am doing ok. It is the opposite. I have said, ok enough. I can’t do it anymore. I don’t want to do it anymore. I cannot fight against my disease – against my Self – anymore. I know what I can’t do. Now I just have to nurture what I can do. For the first time in a long time, I’m growing again.

This article was originally commissioned and published by Feminartsy.