In 2000, I choreographed a piece of dance theatre based on themes and ideas from the story of the Little Mermaid. I called the performance ‘Walking on Knives’, as in the story, when the mermaid gave up her tail to get legs, she experienced terrible pain through her middle, and ‘every step she took was like walking on knives’. Little did I know that a year later I would start experiencing pain in my hips that would make me feel like I was walking on knives, and that this would become my everyday reality. Having lived with increasing pain and lack of mobility for 18 years, I am finally having a double hip replacement on August 8th at the RDE hospital in Exeter.
I feel nervous – not so much about the operation, that’ll be done with an epidural and sedation, and is in the hands of the surgeon. But about afterwards – how will I feel? Will there be pain? Will I be able to move? How long before I stand up? How different will it be? The surgeon is correcting the dysplasia in my hips, and adjusting my legs to be the same length. So when I first stand up, it will be with a new, unfamiliar body. I have no idea what it will be like to live and move in that body. I also have no memory of what it is like to not be in pain. How will it be to have an absence of pain, an absence of stiffness, an absence of limping? What is the experience of absence?
As I move through this experience, I want to try to feel a sense of creativity in the unravelling of the story and my body. So this blog will also be a place to share poetry and other forms of art, perhaps even performance, a little further down the line of healing. For me, as a performer, having spent years tuning into my body, and the relationship of body to mind, this process is not just medical, or social, it is one of identity, and of (re?)discovery. It is also about the experience of time, and how time is experienced differently during the process. Now, in m pre-op life, my sense of time is concerned with how long it takes me to get from one side of the room to the other, or how long the daily struggle of putting on trousers and socks will last. Post-op, time may be experienced differently, as I move differently, think differently.
In anticipation, I’ve written a poem drawing on themes and ideas from the story of the little mermaid, through my interpretation of her experience, and mine. It’s left deliberately unfinished, open, at the end in the last line, because I don’t know what the experience will be after the operation. Will I feel freedom, movement, fluidity, and an absence of pain? Or will it still feel like walking on knives?
Walking on Knives
A glimpse. It becomes a gaze. How beautiful he is and moves. He hears her but cannot see, Cannot touch. Yet his eyes beseech her, Desire her, Fasten her with a hook That draws her to the surface Of another world. Give up the tail Give up the voice Give up the known life. Pain, pain, pain rips through her middle As the singular is sliced in two. A woman is born and emerges to hope.
And every step she took Was like walking on knives.
Tailless, the unfamiliar feet Touch the dry texture of stone and wood. Balance is harder on two than one, Trying to float in sky, not water, Chained to the earth. Singing inside - Never heard. Bleeding from the middle – Never seen. Dancing and smiling – Never loved. A sacrifice formed vainly from vanity, Hopelessly from desire.
And every step she took Was like walking on knives.
The story shapes a mirror That presents my own body and song. Looking down into and beyond the water’s surface, Deep into the dark green world beneath I see her face. We look at each other, Reflections Glimpsed through shadows. And we still believe Still hope Still love. The water that floats and breathes Shows glints of the harsh sky above Which silences and bleeds.
And every step we take Is like walking on knives.
I move into the beckoning water, Feeling its gentle resistance around me. I can swirl and extend and bend In a way not possible on the dryness of land. Who needs two legs, anyway. Fusion of limbs forms a tail Which swishes and guides And moves with pleasure As I sing sweetly of freedom.
I haven’t written a post here for three months, and what a strange three months it’s been. After the last entry, when the second operation was postponed due to a test that told me I was pregnant, but after more tests showed I am actually in menopause (how the same result leads to opposite outcomes), I’ve been back at work, and preparing for my trip to India, due to fly there tomorrow for two weeks for a research project. And then after coming back, the operation is rescheduled for 28th April. All planned well and sorted.
Or so I thought.
Now, I’m in isolation in my house, looking at a quiet, frightened world outside. The trip to India is cancelled, and the operation postponed, until… whenever. The university has closed, the students have left, and we’re teaching and meeting through screens, substituting two-dimensional flickering for three=dimensional feeling. As I have asthma, I’m trying to avoid going out as much as possible, grateful for my garden, but also wondering about the nature of contact, and how to live without it.
Perhaps because all my travel plans are on hold, and I’m living within a series of walls with only the views of front and back outside to sustain me, I’ve been thinking about travel, journeying to other countries, the places I’ve been, the people I’ve met, the things I’ve done elsewhere than this house and city. I wrote two poems a couple of nights ago. This first one is about Bombay, where I was due to be in a week’s time after working in Bangalore. I was remembering the first time I went there when I was three years old. I have a very vivid memory of watching the colours of the sunset over the sea – it’s one of the clearest memories that’s stayed with me throughout all these years since. Maybe the colours, sounds, smells were so different to my three year-old self’s experience up to then, that this moment imprinted itself in my mind and continued with me. Whenever I go back to Bombay now I need to sit by the sea to watch the sunset, to relive that moment, to connect with the story of my life and family. I usually stay in the south of the city, in Colaba. When travelling from the airport through the traffic-filled streets, there’s one particular moment when turning left onto the seafront at Chowpatty beach and going along Marine Drive. When I sea that view opening up in front of me, I think ‘I’m home’. My other home. So here’s a poem thinking about that, with a photograph I took in 2012 of the sunset over the sea from Marine Drive.
The first time, I was three years old.
My oldest memory.
Colour, colour, colour like I’d never seen before,
And wouldn’t again for nine years.
Many memories still linger from that time,
The otherness of the world imprinting my
Three year-old mind forever to today.
An elderly aunt seating me on her lap
And showing me how to play the keys of a piano.
The horrors of the flight over –
My ears suffering, as they still do now.
People who were family and yet not known.
Smells, sounds, tastes, all overwhelming,
Senses pushed overboard.
A foreign world that over visits, through the years,
Became my other home.
I know I’m home when
Driving from the airport I turn the corner
And head down the wide road with the
Queen’s Necklace of lights,
The art deco verandas,
And the sea filling the bay.
And whenever I go back
I need to sit there again
To see the colours,
To reconnect with the earliest memory.
Marine Drive. Sunset. Home.
One of my other favourite moments on Marine Drive is that as the sun goes down, the promenade fills with people come to watch the sunset, as well as go jogging, eat snacks, chat with friends, and walk. I think of this as the Indian passiagata, the tradition of walking through the city in the evening that also happens in Italy, France, and Spain, as well as other places. It’s one of my favourite way of walking in the city, feeling the difference in the way of being at these times compared to the day. Above all, the passiagata for me is a time of being sociable, of being in contact with people through walking, talking, drinking, watching. Strange to think that all those places are now also in lockdown, empty, quiet. In this time of ‘social distancing’, the yearning to be anything other than socially distant is very strong, so the memory of passiagata is in my mind and body as I sit in my house, surrounded by unseen others also in solitude, sharing yet separate, waiting and hoping.
Photos below of passiagata in different cities that I’ve taken, followed by a poem.
My favourite kind of walk.
In Italy, Spain, France, India,
(Lecce, Madrid, Nice, Bombay)
Walking through dusk- to dark- covered skies
With the brightest of lights in
Shops, cafes, bars.
Strolling along by joggers, talkers, drinkers, lovers,
And sellers of balloons, ice-cream, toys, snacks.
Andante meanderings through the changed city landscape,
Sipping cerveza, licking gelato, munching olives, drooling over mangoes,
Sharing evening air and gossip
Accompanied by musics of many sorts.
Crowded yet spacious, occupying time and place
With many others also pacing away the few hours,
Promenading through a liminal life in measured breaths.
Today is the Winter Solstice, a time of change, shift, turning, as the planet tips on its axis, affecting light, heralding return of the sun. On the longest night of the shortest day, people in Iran celebrate the festival of Shab-e Yalda, where family and friends come together to share food, and read poetry. In the depths of winter, the heart of the long dark hours of night, there is a reminder of a birth, a seed, that is germinating and will continue to grow through the winter months to emerge in Spring.
Still, the dark months are a time of reflection, and it’s certainly been that way for me over the past few weeks. My previous post talked of my impending operation the next day, and finished with the Zen phrase: ‘I learn only to be content’. This has been tested in me in what happened when I went into hospital for the operation. I had prepared, mentally and physically, packed my bag, turned up at 7am. I was last on the list. Everything was going well, and I was waiting for my turn, when a nurse turned up to say that there’d been an abnormal result from a blood test they’d taken that day. Eventually, the anaesthetist and surgeon came to talk to me, and said that as this represented an undiagnosed condition, they didn’t want to operate until they find out what’s going on. I was devastated – all my preparations, plannings, readiness, had suddenly fallen apart, and I was left with uncertainly of a new physical issue, and not knowing when I could have the operation. I have to go to India in April for a research project, and as I can’t fly for three months after the operation, this means I’ll now have to wait until after I come back in April to have it done, so will need to live in pain and with uneven leg lengths for months to come. And I’m having scans and tests to try to find out what this new condition might be. It’s been very difficult to deal with this, and have to readjust to the new situation. Trying to stay content is challenging in the face of shifting expectations of the body and healing. So I’ll try to take strength from the Solstice today, from the idea that all is in change, that the earth is still rotating, the sun is still there, and even if climate change is causing turbulence around the planet, there’s still a pattern that I need to trust, and know that all will be well. Even if this is made even harder by recent political events that will have ramifications for the state of the country for years to come, it’s important to try to stay positive with the idea of the return of the sun, of the seed giving birth to something new.
A year ago, this time in December, I was in Kerala in India, a place where the sun and warmth is so different from England at this time of year. As part of the research project we were doing, we visited the festival of Vrschika in the Sree Poornathrayeesa Temple in Tripunithura, near Kochi. Here, processions of elephants carry the temple’s deity around the courtyard to the accompaniment of loud drums and wind instruments. It’s a spectacle that draws many thousands of visitors. We were there to study and consider the welfare of the elephants, and the changing history of their use in these types of events. But we were also observing the different kinds of performances that were happening. One of these, taking place overnight, were performances of Kathakali, a classical form of dance-drama from Kerala. I love Kathakali – it’s been one of my favourite forms, and learning a little bit of it in 1987 was the instigator of my coming back in contact with my Indian heritage, including travelling to Kerala to learn and practice it, and watch performances. The moment of the reveal of the characters from behind the multi-coloured curtain is one of the most thrilling theatrical experiences.
Before the performance in the temple last year, we were fortunate to be invited back-stage to observe the actors being made up, and putting on their costumes. This was amazing to watch, with the dark room lit by oil lamps, and packed with people helping the preparations. And the actors – watching the transformation from man to mythological figure, the human obscured as the character is born, emerges in the process. I was fascinated to watch how the actors would look at their made-up face in a mirror in order to absorb, become, the new being they were going to portray for hours on the small stage. The point of transformation into that new, elevated being comes when they put on the crown headdress, and then become more-than-human, ‘other’ to the world. I took the photograph below of the moment of the actor looking in the mirror, reflecting on himself and the character. It’s a moment of quiet privacy amidst the flurry happening around. I wrote a poem about this a few days ago. Stepping back, I’ve noticed that many of the poems I’ve been writing have themes and images of reflection and reflecting, perhaps indicative of the state of bodymind I’m in at the moment. This one is thinking about the process of shifting from actor to character, as well as the magic of the performance, and then of us going outside after the all-night performance, shortly before dawn, and watching a solo elephant being led by its mahout, walking in circles around the temple to the accompaniment of a bell, as it had been doing during the night. The turning of time, of nature, of stories, of seasons, reflected now in the shift of the solstice to a new season, a new life, a new moment.
The second hip replacement is scheduled to happen tomorrow. As it’s been postponed several times, I’m going to hold out believing it’ll happen until they’re doing the spinal anaesthetic! The thought of going through it all again makes me feel anxious, but also I’m just keen for it to be done. The other thought is that this hip has been bad now for 18 years. It’s become part of who I am. I had to make a huge adjustment not just physically, but also in terms of my identity, when the arthritis first started, and I had to stop doing dance and martial arts. Since then the pain, lack of mobility, and limping have become part of my daily life, of who I am. The operation tomorrow will change that again, into who/what I don’t know, but I’ll need to absorb and deal with the transformation mentally as well as physically.
This absorption, acceptance, made me think about a Zen garden in Kyoto which I visited when I was in Japan in 2005. Ryoanji is a famous temple in Kyoto which has a garden made of gravel with fifteen stones placed within it. There’s a viewing verandah along one side. Wherever you are on that verandah, it’s only possible to see fourteen of the stones at a time – nowhere can all fifteen be seen at once. Perhaps our lives are like this – we can never see the whole picture when living it, never know the complete story. And so have to be content with what we can see, experience, and know in each moment.
Behind the garden is a stone basin, or tsukubai, with flowing water. The cover consists of four kanji, “ware, tada taru (wo) shiru”, which can be translated as ‘I learn only to be content’. I spent a long time sitting in front of the stones in the garden (I arrived very early when the temple opened, and so was fortunate to have a quiet time there on my own before other visitors arrived), and still remember the feeling of space and contentment I experienced. The kanji on the tsukubai and what they mean also affected me, and I bought a keyring from the temple shop which is a replica of the cover, which I use for my house keys, and so see on a daily basis, to remind me of this. So as I go into the operation tomorrow, without being able to see and know the full picture of fifteen stones, of what my life and body will be afterwards, I shall try to keep in mind (and body!) the mantra of ‘I learn only to be content’.
The second operation was due on 29th November, but a few days before the hospital phoned to say it had been postponed to 10th December. This couldn’t be helped, and they’ve tried to do their best to fit me in on the next soonest date. But I still found it hard to deal with this. I’d prepared for the date mentally, as well as practically, and the delay has meant that all the preparations have had to be changed. As it’s getting closer to Christmas, it’s also making it difficult to find someone to stay with me afterwards. I’m trying not to get too anxious about this, but I do feel I’ll need to have someone stay overnight even if just for the first few days for reassurance that there’s someone in the house if something happens. I usually feel I can take things in my stride and be fairly strong, but something like this makes me feel very vulnerable. Being independent is fine, however the reality of being human is that we’re interdependent, and need each other, rely on each other, and have to ‘be’ together in order to ‘be’. Buddhist teacher Thich Nhat Hanh says: ‘‘“To be” is to inter-be. You cannot be by yourself alone. You have to inter-be with every other thing.’ (The Heart of Understanding, Parallax Press, 1988: 4). This is really brought home at times of physical and mental vulnerability, and also of course relates to our collective action in addressing pressing world concerns of the environment and social justice.
On another thought, perhaps because I haven’t been able to travel outside my home town for the past three months since the operation, I’ve been having vivid dreams about travelling to other places. . A few nights ago I dreamed I was going up a mountain in a train. I’ve dreamt about this mountain before, the same one, many times, with different stories and people. Last night my father was there, and we were talking about the mountain, and taking photographs. The mountain journey is vivid, and stays with me in the waking world – I can conjure it now, while other dream places and stories vanish on waking and can’t be grasped or remembered. There are a few places like this that I dream about over and over, and feel real to me in the waking world, though I’ve never seen them other than in dreams. Are they ‘real’? Do they exist somewhere, and maybe one day I’ll turn a corner, and there they’ll be? Or are they purely neurons firing and re-firing in patterns that have created stones, landscapes, people, countries, that have no substance outside my head? I wrote this poem about a house and streets I dream about many times. The house is somewhere I’d like to live, though have no idea where it actually is. Or even if it actually is. But I know it when I’m there in the dreams. Does that make it ‘not real’?
Do dreams create places? I’ve been to the same house many times, Walked the same three streets of a town. I know the colours of the walls And the fronts of the shops.
I’ve lived many lives and stories in those walls and streets. In dreams they’re named as being in real places Yet aren’t part of them in the waking world.
The things that have happened there, Marches, songs, shopping, encounters with friends, family, strangers, ghosts. Stories played out that happened somewhere not-here. Or even not there, really.
But I know those streets, The gradient of the slope, the way they connect at the top.
The house is not on those streets; It has no surroundings or location.
But in the middle is a courtyard, surrounded by a high open verandah upstairs Leading to rooms with heavy wooden doors. In the courtyard is a garden, open to the air.
This house is somewhere I’ve lived, visited, loved, and escaped to Over and over, with people known and imagined.
These places are not real, but they are created; And being creations, they exist.
It’s been 95 days since my first operation, the right hip, and in 19 days time on 29th November, I’ll have the second one to replace the left hip, and become symmetrical in my bionic-ness. The space inbetween the two operations has been a strange time of limbo, of waiting. I’ve been doing my exercises, trying to make my right leg as strong as possible to be helpful to the left after the next op. But because the left hip is still so bad, I’ve needed to stay on crutches all this time, when I’d have expected to be walking without them by now if the other side was all right. Also, as the surgeon made the right leg longer in anticipation of evening them out in the second op, I’m lopsided in my walk which affected my back pretty badly. I visited the physios in the hospital where they gave me an insert for my shoe, but also said they couldn’t really do anything until I have the second operation. So I had just had to wait. Be patient. Live between the spaces of the two surgeries.
The reason I haven’t been writing this blog for quite a few weeks is that I’ve officially been back at work, though on research leave, so working from home. The reading and writing I’ve been doing, trying to finish an article before I go on sick leave again after the next operation, has filled my head with thoughts and words, leaving little space for reflection on my experience. This is the nature of work – it fills the spaces, until it feels that there’s little left for breathing, thinking, living. This blog has been a place for me to create space, and so seeing how squashed this gets by my ‘work writing’ and thinking makes me realise that I must find a way to make more space in work, to find life and breath in the flurry of words I’m expected to ‘produce’, the crazy number of emails I have to answer, and the needs of students whose anxiety spills over into the space and time of those that teach them.
Writing and crafting words has made me think about the first article I published when I was writing my PhD on Buddhism and performance, ‘Removing The Writing From The Wall, And Then Removing The Wall’ (Studies in Theatre and Performance, 23.2 (2003)). Written as a musing on writing, on performing, on breathing, I was thinking about the large number of words I was using to discuss the experience of acting in my thesis. How we can talk about experience? To use words to describe something that is not connected to words, but to being? Using ideas from Buddhism I suggested that we need to look at the space between things rather than the things themselves to understand and live the experience: the spaces between gestures and movements in acting, between the notes in music, between the lines on a piece of Japanese calligraphy, and between the words in poetry. It’s in the inbetween that who we are is revealed and lived.
Today I decided to re-watch Laurie Anderson’s film ‘Heart Of A Dog’ (2015). I got the DVD after watching the film in the cinema. It’s a sad and beautiful meditation on love, grief, loss, and life. She’s a creative artist I’ve admired for many years, and in this film she lays bare her experience of living, loving, and losing her dog in a rich use of imagery and text. Knowing that not long after this she also lost her partner, singer Lou Reed, and that they’d only found each other as life partners a short time before this, makes this into a filmic space of trying to understand the experience of being and letting go. Using Kierkegaard’s ideas on life being understood backwards but must be lived forwards, as well as Wittgenstein on the power of language, and David Foster Wallce’s idea ‘Every love story is a ghost story’, she moves backwards and forwards through time, through the remembered film strip of her life, piecing together a narrative of experience. As we all do. Even writing this blog, the blog entries on the feed on the website start with the most recent, and then scroll through previous posts in reverse order, so reading my life happens backwards, piecing together the puzzle in reverse, seeing the experience first, and the understanding of how it came to be afterwards.
Thinking about my article I wrote about using words to discuss what couldn’t be spoken, the space inbetween, I suggested that in my PhD an experience could be expanded to be talked about in 100,000 words, and simultaneously contracted into the seventeen syllables of haiku. At the start of the article, in place of a traditional academic abstract, I wrote:
To speak of a moment is to lose it. If seventeen syllables seem too many, How much more so the 100,000 words of an un-emptied mind. So how do I write my thesis?
At the end of the article I suggested that perhaps I could write both a 100,000 thesis and a haiku, and that was ok. Both are expressions of the experience, so neither can be the experience, but both can describe it in different ways. Several years later I completed the 100,000 words of my PhD and wrote a short poem which I printed and placed on its own page at the very end of the hard copy. I didn’t quite have the nerve to say to my examiners that they could just read the three lines rather than the 100,000 words, though to me it does capture the years of practice, thinking, and writing that went into it. But perhaps what I really wanted to say is in the spaces inbetween the words.
No mind, no self, No one, nor many. Blossoms falling in the sky.
A few days ago singer and songwriter Sia stated publicly that she suffers from Ehlers Danloss, and lives in chronic pain. I wasn’t surprised to hear this. Whenever I’ve seen videos of her dancing, I’ve thought that she might have EDS – there’s a difference in how someone moves if they’re flexible, and how they move if they’re hypermobile. I really appreciated her honesty in naming her condition (along with others including neuralgia and herniated discs – EDS is often part of a series of conditions) as it brings greater awareness, and acknowledges the difficulties of living with constant pain, physically, mentally and emotionally. As I mentioned previously some dancers and gymnasts have hypermobility, and can be applauded for their extreme flexibility, whilst they’re actually damaging their joints and experiencing great pain, leading to problems in later life. But also there’s a desire to stretch the joint beyond the ‘norm’, to feel the full extent it can reach: it’s like a satisfying yawn. And every time this happens, it damages the joints more. And every step she took was like walking on knives.
One of Sia’s most famous songs is “Chandelier” (2010). Its sweeping melody in the chorus and relentless rhythm can make this feel like an exhilarating expression of the joy of dance and life. But the lyrics tell the story of pain, addiction, guilt and depression: ‘Can’t feel anything, when will I learn’; ‘ I’m gonna fly like a bird through the night, feel my tears as they dry’; ‘And I’m holding on for dear life, won’t look down won’t open my eyes’. The video of the song shows the desperate relentless nature of trying to live with this through her non-stop, agitated movements, needing to escape from the inner pain. Knowing now, officially, that she suffers from chronic physical pain and how this affects her mentally, during Mental Illness Awareness Week in the United States, reinforces the bodymind relationship of pain in different forms, and that people often live with this in silence and invisibility.
Reading about Sia’s experience helped me this week, when I’ve been coping with quite bad back pain, which I think was brought on by the difference in leg length as a result of the operation. Even though I try to stand straight and evenly, it’s inevitable in walking that I’m lopsided, and this has been putting strain on my back muscles. As a result of this pain, I haven’t been able to do the level of exercises and walking that I’ve been doing previously, which has pushed my recovery back, and made me frustrated and anxious. It’s getting better now, but I’m accepting that I may not recover as well from this first operation as I might have done if I didn’t have the other hip being so bad, and that I’ll need to wait until the second one is done to work towards an overall improvement. The worry is that I’m damaging the effects of the first op by not being able to strengthen it as much. I could now walk with just one crutch (ironically supporting the un-operated leg), but I still need to rely on two in order to help my back stay straight. Every movement is a compromise. Last night I dreamed that I was walking without crutches – I often have this dream. In the subconscious world, no crutches are needed.
This week is the celebration of Dusshera, marking the end of Navaratri, and in some regions of India, particularly celebrating the victory of the goddess Durga. She is the embodiment of the divine mother, a fierce protector of her children, fighting for the triumph of good over evil. She’s certainly not a quiet, patient, ‘good girl’, but radiates female power and strength, riding a tiger or lion, wielding weapons, battling demons. And with Sia battling her inner demons in ‘Chandelier’, let’s not forget she also sang of strength and resilience in David Guetta’s ‘Titanium’ and wrote ‘Diamonds’, sung by Rhianna.
Thinking about when I danced Mohiniyattam, a form of classical dance from South India, as well as Sia’s experience of pain, Durga’s ferocity, and my own memories of dancing, of ‘being a dancer’, and reconciling this with my body as it is today, I’ve written a poem. I’m always wary of sounding self-pitying in writing, but sometimes it’s also important to express the reality of the experience. The memory of dancing is still strong in my body – I feel every move that I write below, even if there’s still a way to go yet before I can re-perform the movements. Here’s to swinging on chandeliers!
Breathe in – release – stamp – flick – rotate – extend – shift weight – right-left – place – curl out to side – head up – arch back –
pulse beats through floor, vibrates on naked soles, transmits to nerves, blood, ligaments; muscles tense and flex, eyes light with presence
Bend – sway – heel out – shift weight – extend leg – leap high – arm out to side and up – look at back of hand –
visualise, imagine, see, feel, hold it inside, let the inside come out, the image feeds the movement, lets the body sing the song, beat the rhythm; see the flame, become the image, staccato, legato, pace, timing, sync
Ta – te - ta - - te-ta-te – tum - Ta – tey-am – dimme – tum –
Bend – touch – up – arms stretch – hands meet – neck curls – eyes down – eyes up – pause – Breathe out
accept – applause transform perform strength life breath – accept
Six weeks since the operation! According to all the info leaflets, this is a landmark for hip replacements. The risk for dislocation is reduced, the joint should be more stable leading to resuming everyday activities (including driving), and it’s possible to use one stick rather than two crutches. I feel that I have ‘achieved’ some of this (why ‘achieve’?). I’m managing stairs, being in the house on my own (with the help of my trolley and grab sticks), going out for a walk every day, having a shower, doing more exercises. So this is all good. And yet I’m still having to use two crutches, as the other hip, the un-operated one which was the worse one to begin with, is still very painful and stiff, so I need support for both sides. And I get some pain in the operated hip, particularly in the mornings, and if I’ve been sitting for a long time. Hopefully this is ‘normal’, recovery pain. I’m seeing the surgeon again in a few days, so will find out how he sees my progress then.
One of the reasons I’m stiff in the morning is due to still not sleeping well at night. I can lie on my left (un-operated) side for a while, but then feel a pull in the operated hip, so need to move onto my back again. I’ve become aware that my mattress feels a bit lumpy (I hadn’t noticed this before), and a combination of this and the movements has meant that my lower and mid back have become quite stiff, leading to a pulling in the groin on both sides, and a stoop in the morning that takes a bit of exercising to sort out. This stoop is putting extra strain on the hips until I’m able to stand upright properly. I’m thinking of ways to do deal with this. Getting a new mattress is tricky at the moment, so maybe a mattress topper would help.
Reflecting on the embodied experience of ‘healing’. of trying to become ‘normal’, I’m thinking about language, the embodied nature of language, and how this relates to our physical experiences in way that connects to mental states, ideas, and our sense of morality. Philosophers George Lakoff and Mark Johnson have talked about this in their book Philosophy In The Flesh:
‘Reason is not disembodied… but arises from the nature of our brains, bodies and bodily experience. … It is the striking claim that the very structure of reason itself comes from the details of our embodiment. The same neural and cognitive mechanisms that allow us to perceive and move around also create our conceptual systems and modes of reason. Reason is not, in any way, a transcendent feature of the universe or disembodied mind.’ (Lakoff & Johnson: 1999, 4)
Based on this view, they have explored the way we conceptualise, perceive, and understand the world, and how this is shaped by our bodymind experiences, ‘[b]ecause our conceptual systems grow out of our bodies, [therefore] meaning is grounded in and through our bodies’ (Lakoff & Johnson: 1999, 6). The embodied mind, in attempting to make sense of the world, creates metaphors that are inherently linked to the experience of the sensorimotor system. Lakoff and Johnson offer the example of the metaphor ‘More is Up, as in “Prices rose” and “Stocks Plummeted”. In the More is Up, a subjective judgement of quantity is conceptualised in terms of the sensorimotor experience of verticality’ (Lakoff & Johnson: 47) Similarly, a physical experience, such as the difficulty in lifting a heavy object, is related cognitively in the mind to the experience of the difficulty of coping with responsibilities and problems. This cognitive connection is repeated until it becomes established as a pattern, and the conceptual metaphor arises:
Difficulties are Burdens Subjective judgement: Difficulty Sensorimotor Domain: Muscular exertion Example: “She’s weighed down by responsibilities. Primary Experience: The discomfort or disabling effect of lifting or carrying heavy objects. (Lakoff & Johnson: 50)
In this way, the physical experience of being ‘upright’ equates to a moral sense of character: ‘she’s an upright person’, ‘stand tall and proud’, ‘be an upstanding citizen’. The other side of this is to be non-upright, to be physically affected in a way that results in being bent, curved, stooped, crippled, ‘weighed down with responsibility’, limping, stumbling, and ultimately, falling and fallen. All these terms have ‘negative’ connotations in our language relating to character: ‘she stumbled into a life of crime’, ‘she stooped so low’, ‘limping through life’, ‘falling into despair’, and, of course, being a ‘fallen woman’. Language we use to describe physical disabilities and ‘abnormalities’ are cognitively linked to being a person of alterity – not the ‘norm’, not ‘proper’, not ‘whole’ and moral. It’s no wonder this is reflected in attitudes in society, when people with disabilities have been hidden away, a source of shame, marked with some form of sin they must have committed to lead to a deformed body. And reflected in works of art, where such a figure is often isolated, morally questionable, afflicted in body, mind, and soul. And even if not physically, they can be morally disabled, hence the ‘fallen woman’. The embodiment of the sinful, immoral woman who does not stand upright, who trips and falls into a life of deprivation and promiscuity. These women need to be redeemed, reformed,, to feel penitence and rehabilitated through being purged of their immorality, to stand upright again. If they’re lucky enough to survive this – I come back to Hans Anderson’s versions of the stories of the Little Mermaid and Red Shoes again, in which both women characters have their moment of realising their sins, a blast of redemption – and then die. There’s no happy ending for the Fallen Woman.
How do we decouple language relating to a ‘disabled’ body and embodied experience from being cognitively connected to these kinds of judgements about the person? To reclaim stooping, limping, tripping, and falling as being ‘normal’, a result of a physical condition rather than some form of reflection of an inferior character? Positive images of disability are hugely important, and yet often so lacking. Perhaps the increased interest and viewing of the Paralympics is leading a greater understanding of the able-ness of supposedly non-able bodies. But theatre, film, television, visual arts, and literature still abound with reinforcing images of physical ‘impairments’ leading to a character being pitied or despised.
I want to be free of pain, to walk upright, without a limp, to not be looked at by people when they walk past, to not feel like the ‘other’ due to being born with a set of conditions that have led to the current state of my body. But how do I embrace all this without the operation being seen as ‘correcting’ the deformity? Of ‘achieving’ an upright stance and being more ‘normal’? I still don’t know how much the operations will really work to enable me to be pain-free and walk without a stick – I guess I’ll find out over the next number of months. But the experience I’ve had of feeling pain, limping, falling, being ‘disabled’ is now part of my life story, and has made me think about the language we use to describe these experiences, and how this connects to how we perceive and relate to people with ‘disabilities’, ‘impairments’, ‘abnormalities’.
Just over five weeks since the operation. I’ve been going out for a walk
every day, making the most of the sun while I can – it’s officially the
start of Autumn next week, though I’m trying to deny that colder
weather is coming! Having been able to manage walking for 20 minutes
without too much of a problem, I decided to change my route a couple of
days ago in order to make it up to 30 minutes, and see how that felt.
What I hadn’t bargained for was that this new route involved some quite
steep uphill walking so I had to go much slower than on the flat. This
meant that the route actually took me 40 minutes to walk instead. Even
though going at a fairly slow pace, I was really tired when I got back
home. But in a good way. The muscles in my operated leg were a little
sore, though not feeling damaged, just that they had been used. After
sitting down for a while afterwards I got got up, and my un-operated hip
was very stiff and painful, whereas the operated one felt fine. This
was good to be aware of the change. And also, I wouldn’t have even
contemplated being able to do a 40 minute walk before the operation. So
even though I needed to rest the next day, and been doing my original
route with a bit added to make it up to 30 minutes, it does all feel a
sense of progress.
The other thing I did this week was to look at my scar for the first time. I haven’t felt able to do this before. To be honest, the thought of having two large scars, one on each leg, was one of the reasons I kept putting off the operation(s). This wasn’t just about vanity, but tied into the reality that once the replacement is done, there’s no going back – you can’t have the original hip put back in. So whatever the result of the operation is the reality of how I’d have to live, and this thought was quite scary. It was only when the pain got so bad that I felt that whatever the outcome of the operation would be better than living with the pain, that I was able to face both the operation, and the scars afterwards. In fact, looking at the scar in the mirror, it’s not nearly as bad as I thought it would be. It’s 15 cm long, and a visible indentation in the skin, but the colour and texture don’t stand out as much as I thought they might. I can live with this scar, it’s now part of me, inscribing a chapter in my life experience. I have another much bigger scar on my back from when I had a patent ductus operation when I was five. Nowadays, that operation is quite standard, and I think even done through keyhole. In 1973 it was a very big open heart surgery, leaving me with a large and visible scar that I was very self-conscious about all through my childhood and teenage years. Going swimming meant I had to explain what it was, and I never wore strappy dresses. As I grew older, I changed my view of the scar, knowing that I wouldn’t be alive now without the operation, so the scar is a marker of that. Similarly, the scar on the side of my leg is a permanent marker of this process of accepting and living with a new body designed to make my life better. Scottish poet Alasdair Paterson wrote two lines in his poem ‘Age of Bronze’ that I think about in relation to this:
the wound your survive is the scar you can live with
Yes, I’ve survived, am learning to survive, so I can live with the scar. And the second one I’ll have after the next operation. At least they’ll be symmetrical! I took a photo of my leg pre-op as a reminder of how my skin looked: unblemished, whole, smooth. At some point I’ll take one of the scar, and know that I can live with the changed skin, changed body, changed mind.
Having been living with ‘pain’ for a long time, I also think about what pain is, and how we experience it. It’s a word that can encompass many things, many ways of feeling and being. And it can also be culturally-determined in different forms. Spanish playwright and poet Frederico Garcia Lorca used the word ‘duende‘ to describe an intense physical and emotional reaction to a performance or work of art that can feel like a form of pain. He related this particularly to the performance of flamenco music and dance. I love listening to flamenco, and watching the intensity of both musicians and dancers being so absorbed in the deep expression of the rhythms, melodies, words, and movements. I was thinking this morning of the voice of Cameron de la Isla, a flamenco singer who often performed with the wonderful guitarist Paco de Lucia. Cameron’s deep, rasping, emotional voice immediately gives me a visceral reaction, a deep yearning pain that vibrates through my whole being. It may not leave a visible scar, but the sounds feel like beautiful wounds expressing a depth of emotional experience. Here’s Cameron singing the lullaby, ‘Nana Del Caballo Grande‘, from Lorca’s play ‘Blood Wedding‘. I particularly like this version as he’s accompanied by a sitar rather than a guitar, linking together flamenco and Indian music (that’s another story to do with the possible connection between these).
The experience of love, and the loss of love, certainly also causes pain, and singing of this can expose those inner, invisible wounds and scars that we live with. Violeta Parra was a songwriter and singer from Chile, and the instigator of the revival and reinvention of Chilean folk music. One of her most famous songs is ‘Gracias a la Vida’, made all the more poignant by the fact of her suicide in 1967, Here’s the original lyrics and translation, courtesy of wikipedia:
Gracias a la vida que me ha dado tanto Me dio dos luceros que cuando los abro Perfecto distingo lo negro del blanco Y en el alto cielo su fondo estrellado Y en las multitudes el hombre que yo amo
Translated into English: Thanks to life, which has given me so much It gave me two bright stars that when I open them, I perfectly distinguish the black from white And in the sky above, her starry backdrop And within the multitudes the man I love
One of my favourite of her songs is ‘Que He Sacado Con Quererte‘. I first heard this on a cassette tape in 1989, performed by the wonderful late Argentine singer Mercedes Sosa. I was listening to her singing it this morning, thinking of the wounds we survive, and the scars we live with.
These are the lyrics with a translation done for me by the mother of my friend Lorraine:
que he sacado con la luna, ayayai What did I get from the moon, que los dos miramos juntos, ayayai that we both looked at together? que he sacado con los nombres, ayayai What did I get from the names, estampados en el muro, ayayai imprinted on the wall? como cambia el calendario ,ayayai Just as the calender changes, cambia todo en este mundo, ayayai everything in this world changes. ayayai ay
que he sacado con el lirio, ayayai What did I get from the lily, que plantamos en le patio, ayayayi that we planted in the patio? no era uno el que plantamos , ayayai It wasn't one that we planted, eran dos enamorados, ayayai they were two in love. hortelando, tu plantio, ayayai Gardener, your plot of land con el tiempo no ha cambiado, ayayai has not changed over time.
que he sacado con la sombra, ayayai What did I get from the shadow, del aromo por testigo ayayai, of the witness-like myrrh tree, y los cuatro pies marcados, ayayai and the four footprints marked, en la orilla del camino, ayayai at the border of the path? ¿que he sacado con quererte, ayayai? What did I get from loving you? clavelito florecido ,ayayai blossomed little carnation. ayayai ay.
Aqui esta la misma luna, ayayai The same moon is here, en el patio el blanco lirio, ayayai in the patio - the white lily. los dos nombres en el muro, ayayai The two names on the wall, y tu rostro e(n?) el camino, ayayai and your face on the path. pero tu palomo ingrato, ayayai But you, ungrateful dove ya no arrullas en mi nido, ayayai no longer coo/whisper sweet nothings in my nest. ayayai ay.
Pain, wounds, and scars are caused by many things in our lives, and mark us, whether visibly or not, telling the story of what we have experienced. And what we have survived.
It’s been four weeks since the operation – I can’t quite believe it. Because each day has roughly the same routine, time feels like it’s both going slowly, yet the days are going past quickly. A strange phenomenological displacement of the usual experience of time when I’m busy, and the day is filled with activities mostly to do with work and thinking. So to be so focused on body, and a body that is functioning differently, changing slowly, creates a new dis- and re-location of the inner body clock.
Going back through my previous blog posts, I was looking at the one I posted just before the operation Getting Up, Walking Slow. I’m really glad I did this, as it’s showing the progress I’m already making. As it’s a slow process, and healing is happening in small degrees, it’s hard to step back and see the overall difference. But watching the video of how slowly I was walking then, and the struggles to get up from the sofa, I really see that already things have changed. Using two crutches, I’m able to walk much faster and with more ease than before. And getting out of the chair (higher than the sofa so easier anyway), is happening much swifter and in one movement, rather than the extravagant series of micro-movements I was doing before. Certainly the crutches make a difference, but it’s also the case that the right hip is feeling much less stiff and painful from before. There’s still some of this, but it’s in a different place. As I’ve been doing more walking and exercising, I’m aware of the difference between the right (operated) hip and the left. The left was the worse one, and has been bad for a much longer time than the right, but now after a 20 minute walk, I feel the pain around the whole area of that hip, and getting up after sitting for a while leads to stiffness. Whilst the right leg feels much freer, without the same pain as before. When the pain is there, it’s situated in the muscles, particularly the gluts, which is where the surgeon cut through to do the replacement. Whilst there is still some pulling in the groin, it’s much less than before. I can also lift the right leg higher, and certainly higher and with more ease than the left (though it was better than the left before the op). This means that when I’m walking up and down the stairs, my right leg is my ‘good’ leg, and leads, even though it’s the one that was operated on.
What I’m aware of is the need to build up my muscles more than has been happening. This is partly because of relative inactivity since the operation, but also that these muscles weren’t being engaged properly before, as adjustments were made to to cope with the arthritis, and also with the other hip. In particular, I’m aware that my hamstrings are very underused. I can feel this in the exercise of sitting, and lifting my foot up so the thigh comes off the chair. I’m still doing this by pulling from the groin, rather than pushing from the hamstrings. So I’m going to have to work at locating and engaging these muscles further in order to strengthen the leg. This is very important as when I have the other operation, which will be bigger as more needs to be done to the left side, I need the right to be as strong as possible to support it in the post-op recovery period.
I was a bit disappointed with the amount of physiotherapy we had in the hospital. This had nothing to do with the physios themselves who were brilliant, but I guess with the cuts to the NHS, they were very over-stretched and could only spend a short time with each of us every day, and the main goal of this seemed to be to ensure we could walk and climb stairs in order to be discharged. We weren’t given much in the way of exercises to do at home beyond this, and no follow-up physio sessions. So I was feeling a bit lost as to what the best things to do to strengthen the muscles. Luckily, my friend Sandra Reeve, who’s a wonderful movement artist and teacher who’d had a hip replacement a couple of years ago, sent me through a very leaflet with exercises that also work on strengthening the core muscles, drawing on aspects of Pilates. This has been very helpful, and given me a system of exercises to do each day. I’ve also been finding other suggestions for exercises on the internet. Having a structure of exercises, eg do 5 of these 3 times a day, is very useful, and has been helping to focus on particular muscle groups.
A big leap came yesterday, when I went out of the house for the first time on my own. The sun was shining, and I really felt the need to be outside. With some trepidation, I made it out of the door, and down the steps. These steps had been a problem, as one of them is very steep, and meant I couldn’t manage to get in or out on my own. But then I found these half steps and have two of them next to each other, which means I can get in and out myself, though it’s on a slope, so still have to be careful. I just need to get a grab rail put on the wall as well, and will feel feel pretty secure. But going outside on my own, and walking down the road and back again, felt such freedom. It was sunny and hot, and I bumped into several neighbours to have a chat. I walked about 10 minutes, and sat down on a bench for 10 minutes in the sun, before walking back. So not too far or long, but it was great, and I’ll try to do a little more every day. I felt every little uneven surface in the pavement, each small area of slope, which needed adjustment to walking and use of crutches. Again, satipatthana (mindfulness) helped with staying aware and engaged with each step, whilst also experiencing sky and fresh air.
Thinking of the previous post Getting Up, Walking Slow https://bodystory.art.blog/2019/08/04/getting-up-walking-slow/ with an image of ‘my three feet’ using the walking stick, I took this shadow selfie of me with ‘my four feet’ using the two crutches. I like this image, thinking about reflections, of the doubled body displayed on the street, standing straighter, walking faster, enjoying the sun, four weeks after the operation. Although I think I’ll need both crutches longer than others (in the leaflets, it seems that most people go down to to one stick by four weeks, but I can’t yet because of the other hip being so bad), I’ll need to hang on to being patient for a while longer, and let the muscles get stronger. So one month down, and just two more to go before the second op!
25 days after the operation, and I’m in the house on my own. My friend Rebecca, who’d been staying with me for a week, left yesterday afternoon. At the time I felt fine – I can manage on my own, I can climb stairs, get in and out of the house, sort myself out. But after she left, I was in the house and would be spending the night alone for the first time since I got back from hospital. I had a sudden wobble of vulnerability. Will I really be all right? Can I actually manage? How will I cook and wash up? What happens if I fall over? I wanted to go upstairs and hide under the duvet. So I did some breathing and visualisation, and felt better. There’s always a way of coping, and I would have to manage at some point on my own, so now is as good a time as any.
A little later in the evening, my friend and colleague Jane came round, having kindly gone to a shop selling equipment for people with disabilities and the elderly, and got me a trolley with trays on it. This is because being on two crutches, I can’t carry anything, so this is to help me be able to cook, move plates to the living room (the dining room chairs are too hard to sit on), and carry things back to wash up. This was really important – I couldn’t think of even how to boil some pasta, and then carry the pot to the sink a few feet away to drain it. So this trolley is making it possible for me to be on my own, even though I’m still figuring out how to push it whilst also having my crutches.
This is the trolley in my living room with my breakfast things on – mug which had coffee, and a bowl which had museli. The process of making breakfast and bringing it into the living room made me grateful for those years of practising sequences as part of training in satipatthana, or mindfulness. Make the coffee in the machine. Put empty bowl and spoon on the trolley, and move trolley to where the museli packet is. Put museli in the bowl. Move the trolley to the fridge. Open fridge and take out milk. Pour milk on the museli. Move the trolley to where the coffee machine is. Put mug with coffee on the trolley. Move trolley to the fridge. Put milk in the coffee, and milk back in fridge. Put crutches on trolley, and push through to living room, lifting over a couple of raised bits between rooms. Put trolley near chair. Take crutches off trolley, sit in chair, put crutches aside. Take mug and bowl off trolley and put on table. Have breakfast. Then reverse, putting things on the trolley, taking back to the kitchen, near the sink. Put mug, bowl and spoon in sink. Balance on the edge of the sink while washing items. Take crutches, walk back to living room, and sit in chair.
Phew! When I was doing this, and pushing the trolley, all I could think of was Julie Walters doing the two soups, or Waitress, sketch as part of the Victoria Wood television programme. If you haven’t seen it, do a search. This was me – how long does it take to make, eat, and wash up after breakfast?! Pushing the trolley makes me feel like I’m thirty years older, but it does mean I can find a way to manage on my own.
Having to think so carefully and plan every movement to do the simplest tasks does remind me of the years spent training in satipatthana, with a focus on every-moment mindfulness. How unthinking we usually are about what we do, particularly when it’s a habitual action. Walking up the stairs is something that happens without us thinking about it – we just go up the stairs. At the moment, I’m having to focus on every step up, making sure I put my feet and crutches in the right order, and using breathing to help with the movement. Needing to work at such a level of minutiae of everything certainly helps focus the bodymind, and brings me back to a sense of simplicity (not simpleness) in just doing the next thing. John Garrie Roshi used to tell us Zen stories. One I’m thinking of at the moment is of a monk who went to a monastery to meet a great master. The monk was given a bowl of rice when he arrived. He was told the master would see him, and ran to greet him, saying: ‘Master, tell me the secret to enlightenment!’. The master asked: ‘Were you given something to eat when you arrived?’. ‘Yes,’ replied the monk, to which the master responded: ‘Then go and wash your bowl’. That’s it – enlightenment is just doing the next thing. After the sequence I needed to figure out to eat breakfast this morning, I then needed to wash my bowl. I don’t think this has made me enlightened, but it has helped to reassure me I can be on my own in the house. Another favourite story Garrie Roshi used to tell us was of a monk who ran up a mountain to meet a famous teacher. ‘Master!’, he said breathlessly, ‘please tell me the secret of enlightenment!’. The answer came: ‘Breathe out as you go down the mountain’. So I’ll be doing a lot of breathing out as I go about everyday activities and figure out new ways to do them. I’m sure there’ll be the occasional stumble, but hopefully the experience of the mountain will help to just put one foot in front of the other, and remember to breathe.
It’s so important to have role models, people who inspire you, and give you drive to aspire to who they were, what they did. Through the years of pain and disability, and now in recovery from the first hip operation, I’ve been thinking a lot about these figures who give me energy to work at transformation and belief in finding new ways of living and being. Several of these role models have experienced issues with their body, whether through accidents or illnesses, and have lived with physical pain and restriction, finding ways of using their experiences to take them to new places. These figures are quite eclectic and reflect my own interests and experiences, and I’ll be writing about some of them over the coming weeks. This is the first one of these: the artist Frida Kahlo.
I first saw her paintings in an exhibition in Germany in 1989. I was there by chance having performed in a theatre piece, and with a few spare hours before needing to get to the airport, ended up going to the art gallery. This was one of the first major exhibitions of her work in Europe. I’d never heard her name before, or seen any of her paintings, and was completely overwhelmed by canvas after canvas of the colours and images. In particular, I was struck by the visceral nature of my responses to the paintings of pain, though at that time I wasn’t experiencing this myself. Learning about her life, understanding her dealing with polio from a young age, then the terrible accident, and subsequent injuries that affected her for the rest of her life, I could see this pain manifested in the paintings of herself as a medicalised body, and a woman suffering from the consequences included miscarriage. And yet there was so much beauty – the landscape, the flowers, the animals, the dresses, and her body and face, that the presence of pain seemed to be channelled, translated, transformed into the paintings that also brought hope and the promise of transcendence, whilst acknowledging the reality of the physical and emotional hurt.
As the pain in my body began to worsen over the past 18 years, I’ve gone back to these paintings and her words many times, inspired by her ability and determination to express herself through her art. Watching the film ‘Frida’ directed by Julie Taymor in 2002, starring Salma Hayek, the sequences of her accident and hospitalisation and treatment, and the reality of the pain, felt very real to me.
Being very aware of my own skeleton, looking at x-rays of my crumbling hips, Kahlo’s paintings speak to me of expressing the internal sensations of the body to the external world through art. When I saw the consultant earlier this year, and had an x-ray done for the first time in several years, she said how bad it looked. Seeing the x-ray, and hearing her words, I began to cry. I try very hard to not cry in front of people to not share the pain – why should I impose that on others? But seeing the x-ray picture of the inner reality brought all the feelings out: literally, I felt I’d turned my body inside out, and my unstable, pain-inducing skeleton was on the surface of me, outside the skin, making visible the torment happening inside that I usually tried to cover with a smile.
The painting at the top of this post, ‘The Broken Column’, was created after Kahlo had an operation to place a metal corset on her body to support her. This painting affects me so much – the pain is visible, visceral, in the nails, the metal rods, the torso ripped open. And yet in her face there is something other than pain. Tears fall down her cheek, but her expression speaks of resilience, of feeling and acknowledging the pain, and also transcending this to be a woman who is not defined only by her physical self. Her ability to forge her experience into her art, to express herself so openly without fear, is the real inspiration that I feel from her.
Thinking about this painting and my responses to it, I’ve written the poem below. It’s been a sadness in my life that I don’t have skill with painting, that I can’t translate the images in my mind through a brush on paper, so I’ve tried to do this through movement instead, and now through words and rhythm. Whilst not being able to reach the artistic levels of Kahlo’s paintings, having her inspiration to feel able to write and share my experience has been an opening up of the inner world through expression, and helps me to feel movement whilst spending so much time in stillness, waiting for bones and muscle to heal.
Hammer my body with pins to the walls, Floor, bed, chair, earth. Drill holes, cut bones, tear muscles. Make me into a medical model, A body without a person, A sack of organs without a woman.
Pain drifts, and digs, and drums, and drains. Pain becomes all, no me, no song, no words, Just pain. A limping, crutching, womanikin Searching for a glimpse of inner light.
Painted flowers offer promise of hope, Of transforming pain to poetry, Limping to dance, Groaning to song. But not denying the pain – It needs to be seen To understand the nature of the flowers.
Dark hair sways in a dry wind, Reflections lead to a threshold Of image. Tears may fall down a cheek For loss, for love, for beauty, for hurt, And metal bars hold up the rag doll Of a broken skeleton with crumbled bones. A painting speaks, calls, shines of the pain Of body and heart, And beckons through the doorway Of years and seas to touch another.
It’s two weeks today since the operation. The District Nurse came today to change the dressing, and remove half the stitches. One of the aspects of Ehlers Danloss is that it results in thin, stretchy skin that’s easy to tear, and slower to heal. The surgeon decided to do everything he could to make the wound secure so it wouldn’t tear open. He used the usual dissolving stitches, then on top of that a row of nylon stitches, then glue, then sticky tapes on that, followed by the dressing. So the Nurse needed to peel off all that before removing half the stitches (3 out of 7), and will come back next week to remove the remaining 4. She says the wound’s healing very well, and it certainly feels less bulky and easier to sit on now it’s just a few stitches! I did think I’d take a peak at it, but couldn’t quite manage it in the end.
Over the past few days, I’ve been feeling much more energy, and my mind is getting clearer. This is all good, and pushing me on to do more every day. The other side of this is an increasing impatience – my usual state of being. Each day’s improvements are very small, and I haven’t been out of the house yet, and am feeling stir crazy and wanting to just be well again, and able to fend for myself, and go out when I want. This has made me think about the word ‘patient’, and what it means to be ‘A Good Patient’. Yes, you need patience! Time moves differently in a state of healing, days drag on with the same routine, and little sense of achievement. I’m used to getting things done. Now, I just have to be patient.
This sense of patience reminded me about some of the books I’d read as a girl, where patience is a virtue, and all good girls are expected to be patient, which equated with modesty, quietness, tidiness, and qualities that were painted to us as necessary to be ‘a good woman’. Reading ‘What Katy Did’ (Susan Coolidge, 1872) and ‘Little Women’ (Louisa May Alcott, 1888), what I actually related to was the wild, tomboy, untidiness of Katy (pre-accident) and Jo (pre-carer). This is how I was! Untidy, careless, losing and breaking things, and very unladylike. This was in complete contrast to my mother, and remained a cause of conflict between us throughout her life. I really wasn’t the daughter she expected to have, and despite wanting me to be the quiet, obedient and docile child (she definitely related to Meg rather than Jo in ‘Little Woman’), I just wouldn’t be that. What got to me in the books was what happened to Katy in particular through her accident and recovery process. In both stories, women are tamed through suffering into morality, being the kind of women that (patriarchal) society demands they should be. Though I rejoiced when Katy was able to walk again, I also mourned for what she had lost in what she became. She was just, well, a little boring in her virtue in comparison to the girl she’d been. And although Jo still held on to much of her character, she was praised for being more sober, mature, and softer due to her looking after Beth. And of course Beth is the embodiment of ‘A Good Patient’, suffering in silence, doing good for others, and being everyone’s favourite.
The last two weeks have definitely made be – forced me – into being more patient than usual. But I’m not sure that it has transformed me into being that way forever. No matter how well I can walk or move in the future, the inner me will still be impatient and careless – it’s forged too deep for me to conform to my mother’s hopes now. When she was dying last year, I sat by her bedside when she was asleep, and said many things to her, quietly, that I needed to speak, but at that stage, she didn’t need to hear. The phrase I kept saying was: ‘It’s sad you never really knew me’. Perhaps it was her strict upbringing in India that made her try to impose this on me, to be the good girl sitting quietly in the corner, but this also meant I was a constant disappointment to her. Thinking about those books I read, and Hans Andersen’s version of fairy tales that relentlessly have women being disfigured and dying as an act of redemption for their transgression of society’s rules, made me write the poem below. I still like Katy, but wish she’d believed her younger self to be as much of a role model as she saw Cousin Helen to be. Women are more than pure goodness – the ‘dark side’ is also who we are, and who we need to be, no matter how much we’re told to be patient and good girls.
What Katy Did and Didn’t (and Oughtn’t)
A fall from a swing Leads to smoothly brushed hair. Pain develops love, Suffering creates patience, Lying flat shapes morality.
How does a girl learn To be a good woman? An asset to society? To care for her family? To be educated, upstanding, responsible?
Ah, but where is the tomboy? The wild, rebellious spirit That runs amok, Leads astray, Makes up games, Hates to tidy up.
If pain and disability maketh the woman, And this is the lesson to learn, Then sobriety and patience are valued above Independence and speaking out, Tying shoelaces neatly is more important Than freedom and play.
I loved reading that book as a child, But even then felt sorrow for the loss of Katy’s Katy-ness after the fall. Why do women need bodily suffering To cure their soul? The mermaid’s bleeding legs, The chopped off feet wearing the red shoes. Redemption comes through pain and loss To overcome the woman who transgresses.
The fairy tales and books for girls tell me to transform, To be purged into purity, To be good, patient, kind, To sit quietly and suffer in silence – It’s good for the soul. It’s good for everyone. Be good. Be quiet. Sacrifice.
Living in pain, moving so slowly, relying on others, I smile and am patient, Dress nicely, brush my hair. But I’m yearning to run, Needing to shout and play, To be as untidy as I like, To kill the dragon of ‘Thou Shalt’, Desperate to forget the labels and scars And feel human again. A woman again. The sea witch and evil step-mother are still Part of who I am.
Apologies to anyone who’s not as fascinated with feet as I am!
As mentioned in the last post, my feet have been an unusual shade of pink due to the swelling. Although the swelling has been going down, the particular pink-ness has been due to them being washed with Hibiscrub in order to prevent infection. I was given a bottle of this to shower with the night before, and morning of, my operation. When I woke up, I was covered with the pink streaks all the way down both legs. Obviously the prevention of infection is vital, but it takes an age to scrub the pink stain off, and as I still can’t quite reach my feet to wash them properly, there are still some patches of pink left on them that are a very different shade to the pink of swelling.
As I had to spend so much time looking at my feet when I was lying in bed, these pink streaks and patterns became a feature of watching the changes happen during recovery. This morning I was looking at them, and had a memory of choreographing a piece of dance-theatre in 2002 for the Exeter Festival. It was based on the story of The Red Shoes (it was meant to be the second in a trilogy of dance pieces based on fairy tales following the one I’d made on the Little Mermaid, but I’ve never got round to making the third!). Like quite a lot of young girls fascinated with dance, I remember vividly the first time I saw the film, and the impact it had on me – still does, and I want to live in that amazing house in the South of France where she climbs up the steps for the meeting, sweeping up them in her long cloak and coronet in her hair.
As part of the piece I choreographed in 2002, I had one of the dancers draw patterns on her bare feet using red lipstick – this represented the putting on of the red shoes. This is the memory that came back this morning, looking at the remains of the pink streaks on my feet. I haven’t felt able to write any poetry since the operation as all my bodymind energy is being put into physical healing and re-learning how to move, but today I decided I’d write something, even if just three lines. So thinking about the painting feet with lipstick, the passion for dance in The Red Shoes, and my own pink-painted feet, I wrote the poem below. I was surprised at how much energy it took, and I was in tears and wrung out afterwards. But pleased I’d managed to create something new. Maybe be a few more days before the next one! To explain the last line: the title of the dance piece was ‘Those Who Know Have Wings’, which was taken from an Upanishad, used in a book on shamanism I was reading for my PhD at the time of making the piece. It’s connected to the idea of the spiritual state of leaving the body to contact the divine, in whatever way you’d like to conceive that. So for me, it’s also about body-and-transcending-body happening simultaneously.
Enjoy – and I’ll try to leave off writing about feet for a bit!
Lipstick on my feet. Pink, sticky calligraphy of swirls and dots. Anti-bacterial writing telling tales of A violent assault in healing. Unmoving lumps, decorated with a wash of non-human colour.
Toes wiggle - the pink patterns dance, And the feet are drawn back into being *my* body, No longer alien art works I stare at in a medicated gallery of pedicure portraits. Unnatural punky pinkness makes them Mine-and-not-mine. Fascinating unfamiliar objects cloaking The flesh and nails I've known always.
These feet are fantasies, Inscribed in a created language, Maybe sacred writing of whispered mantras That are working magically to make feet, legs, and hips work again.
The pink markings fade, Absorbed through skin into blood, bones, organs, Feeding new energy to body, breath, spirit, To rise and take flight, To dance again. The calligraphic language becomes one with flesh. A language that has vanished now it's Played its part, sung its song, breathed its pinkness Into the future.
I’m spending a lot of time looking looking at my feet. Lying or sitting up in bed, with my legs stretched out in front of me, my feet are the part of my body most in my line of vision. It’s been interesting watching them change in colour and shape since the op. At first, they were swollen and very pink, encased in foot pumps that were to stop blood clots by exercising the calves.
These pumps were quite strange. They operated by filling slowly with air, putting a little pressure on the legs, then with a sudden snap they’d grip the legs, and release. They did each leg in turn, in a regular rhythm. The other feature of them is the sound they make. As they fill with air, there’s a building up of a hissing, rushing noise, before a sudden snap loud as a firework and release of air. It could be almost like breathing – a drawing in of air followed by sudden release.
But these things were loud, and as I lay awake at night I could hear mine, and those of three or four others on the ward pumping away at different times, a syncopated soundscape of air and snap. Sometimes the final snap was like a firecracker, and would wake me up if I’d drifted off. Listening to them, rather than thinking of the sounds as being like breathing, I had the image of a milking parlour. We were all attached to pumps that were acting as mechanical proxies for our bodily functions, in our individual stall beds, waiting patiently as the pumps worked until they could be taken off in the morning, and we could take back our bodies and move them ourself.
Legs being pumped and milked. Very strange. But I became so used to the sound that I listened for it the first night I was home. Its absence is now part of the night’s experience.
Over time, the swelling has been going down, and the feet returning to a more usual colour. Except for the pink bits. The pink is there for a very particular reason which will be the focus of the next blog post.
Less than a week since the op, and here I am! Came back last night, and happy to be in my own space, though it took me a long time to get to sleep last night through trying to find a new position that works. This means lying on my back, propped up with pillows, as I did in the hospital, so this will be an adjustment for a while.
Phew! The whole thing has been a harder process than I thought. So many people said they felt better straight away after the op, and they’d only be in the hospital one or two nights, that when I had a different experience, I felt a bit of a failure. The pain in the first first few days was really strong, particularly around the operated area. As the surgeon says, he cuts through a big muscle and stitches it up aftewards, so not surprising, but still, being rolled over was agony. I had to use a bed pan for the first two nights, and apart from having to deal with the indigmity, it hurt so much to use it, I kept this to a minimum, which didn’t help either. And then my blood pressure was very low (often between 80 and 90), so it took longer for me to be able to sit upright, and then to get out of bed. The first time the nurses helped me up an on to the commode, I actually cried. Then on the third day I was able to get up and sit for a while in the chair by the bed.
I took this selfie in the chair, feeling triumphant. The smallest of steps felt like the greatest of achievements.
The next day, along came the physios to start work. The hardest thing at first was trying to get out of bed myself, Wriggling and shuffling to swing my legs to the edge of the bed, then swing both legs over together, was painful and very slow. They gave me a walker to start with, due to the low blood pressure. But by this time I’d managed to have a wash and dress is my own clothes, and was raring to go – so here I am standing upright for the first time!
That smile really says how happy I was to be up on my feet again! I managed to get to the end of the corridor and back – it felt like running a marathon, I was exhausted afterwards, but really pleased.
Next day was moving on to crutches. At first my blood pressure was too low, but I begged the physio to come back later, and by that time it was high enough for them to risk it with two of them on hand. It actually felt easier than the frame once I’d figured out the rhythm, and I noticed immediately that I was standing straighter than I had for a long time, and that my back was feeling much better. Just shows how hunched I was over the walking stick. Again, up the corridor and back, which I did several times, and also bothered the poor physios with more questions and exercises (such amazing patience they have!).
Then came Tuesday, the fifth day after the op. The promise was that if I could climb up stairs, I could go home. I was concerned about the stairs due to the other hip being bad, and I was going to manage this. They took me in a wheelchair to a flight of stairs round the back of the hospital. I had to try out several ways of doing it, and realised that the operated hip is now able to lift my leg higher than the non-operated one with no pain – hooray! So going up is – new hip, old hip, crutches, and coming down is crutches, old hip, new hip. It took a while to have confidence that I wouldn’t fall, but I did it! Felt like going up and down Everest. So that was it – I was clear to go home! Of course it then took most of the day to get the paperwork sorted, and for the meds to arrive, but finally I could leave.
Getting in and out of the car needed some manoeuvring, and it started to rain as we drove. The very hardest part was getting up the steps into my house, They’re steep, and don’t have a rail. Luckily, Aqeel and Kate were brilliant and managed to hoist me up the last two to be in! Where I settled in the chair, seen in the photo at the top.
Since then, it’s been a process of learning how to do everyday activities, and be in the house, in a whole new way. My friend and colleague Kate is staying with me, and has been brilliant with sorting out the spaces, doing the cooking, fetching tea, and most particularly helping me up and down stairs. This is still where I feel least confidence. I went to bed early last night, and my legs had swelled up, probably from all the exertion yesterday. I managed to get to the toilet a couple of times myself in the night, though it takes me ages. Then this morning, Kate went of to train in her gym while I was still in bed. Getting up, going to the bathroom, washing in the sink, drying, going back to my bedroom, getting changed, and getting back into bed took me over an hour, and I was completely drained afterwards! But felt so much better having had a proper wash (though I’m really going to miss a hot shower for the next few weeks), and in fresh clothes in my bed. Every movement of each activiy needed thinking about – I realise I needed to move the frame that’s around the toilet to being around the chair that I’m sitting on by sink to wash, as it doesn’t have arms. This meant shimmying around with me, the crutches, the frame, the chair, and towels and rugs on the floor to make this work. Talk about a piece of room engineering! Even figuring out the best way to brush my teeth became a new journey of discovery.
Since then, Kate’s been home, we’ve had lunch, and I’m now sitting back in the chair, writing this. It’s already feeling better than yesterday, and I have to trust that each day will get a little better. Yet again, I feel so grateful to all the years of training in breathing, meditation, movement, and martial arts, as I’m using all of it to re-learn the most simplest activities.
Reflecting back on my time in hospital, i was thinking this morning about how the ward forms temporary communities of people. This may have particularly been the case on mine because it was orthopedics, so we’d all had some form of joint surgery, and were having similar recovery experiences and physio tasks. But being thrown together in an intense, close space, having all our body stats monitored constantly, our physical selves so vulnerable and on display, creates a strangely strong bond for the time that people are together. We were all very encouraging of each other to achieve the goals that meant we could go home, and also to help and support when things didn’t go well. But it went beyond that to the personal very quickly, where we were sharing private details of our lives with strangers we would probably never have met in any other context. My bed-neighbour Carole is 74, owns a smallholding out on the Devon-Dorset border, and we formed a strong connection, sitting and talking with each other. Then there was Maureen in the bed opposite who’d had her op on the same day as Carole and I. She’s 82, and had a much harder recovery time, with complications meaning she’d only just been able to sit out of bed on the day that I’d left. And then there was the ‘difficult’ one further down the ward who was very needy, talked loudly all the time, and people tried to avoid, to the extent one of the patients down that end moved up to ours. Those intense contacts and shared experiences became a big part of the time in hospital. I’ve been left with threads of stories of their lives which I’ll never know the answer to – will Carole’s daughter leave her husband who sounds like he’s controlling her; how long will Maureen take to recover and go home; and what about Sue’s lovely grandson who has cystic fibrosis? To become so intertwined with people’s lives on such a temporary basis was very strange. This morning I had to phone up the ward to say I’d left my walking stick there (as I’d come back on crutches I’d forgotten it), and nearly asked how Maureen is this morning, as I’d always ask her over the previous five mornings. And knowing now there’s someone else in the bed that I had such a full-on time being in, who has their own story that I’ll never know.
So it took five nights rather than one or two. In fact, the nursing staff said hip replacements often take longer than this, and really it would be better to tell people it’ll be longer. I’ll know for next time. All the staff were truly amazing. I could see where they were stretched, and resources are not what they should be, but the extent of personal kindness and care was in such abundance that having to wait a little longer for something wasn’t a big deal. So I guess in finishing the blog for today, there’s one message I really want to stress:
I am officially bionic! The surgeon said it went very well, and already requested to book in a date to do the other hip in three months.
I’m having quite a bit of pain and stiffness. I’ve been lying down with both legs stretched out flat, which I haven’t been able to do for several years. But the muscles, tendons, and nerves are being stretched in unfamiluar ways, causing the pain. This means I can now have a regular slurp of liquid morphine (not gin, yet!)
I was really looking forward to standing up and walking to road test the new joint. Things didn’t quite work out. I’ve had low blood pressure, and when I tried standing up with the physios, nearly fainted, so haven’t yet taken a step. If I had to figure out new ways of standing up before, I’m having to work it all out again from scratch. But at least I did feel that the pain in my right hip had changed position, so hopefully this should mean once the muscles have healed and strengthened, things should be much easier, even if it means being in hospital for a few days more than planned until I’m less wobbly. As is warned in the ironically wonky ‘danger -falling person’ image on the sign by my bed.
No matter how many times I tell them it’s not ‘Mrs’, this seems to be the default option. They wouldn’t use Dr or Prof as they need to identify gender. Although I was admitted aa Ms., it seems easier for them to assume Mrs. I’m having to focus on other things at the moment, but still there are questions here about assumptions and ‘normalising’ of gender in a medical context. But the staff are all lovely, and already figured me out enough to say, when they’re moving me in a way that causes pain, ‘Focus on your breathing exercises’. Will do!
The operation yesterday was an interesting experience. I had a spinal injection, not quite the same as an epidural, but probably familiar to anyone who’s had one. The warm feeling moving down my legs into my feet, before it all turned numb. They decided to take me fully conscious into the operating theatre to find the best position for me to lie on my side (to avoid the shoulder dislocating – one joint per op is enough!). It’s unusual to do this and they were concerned that I wouldn’t like the sights and sounds, but they hadn’t figured on my fascination with bodies, so I was curious to see it. I explained I was more familiar with another type of theatre, and had also acted in ‘Casualty’. They found this hilarious, but may also explain why they sedated me pretty fully, so I only heard the first couple of songs on my playlist before sleeping through it. But with the spinal I came round quickly, feeling alert. They’d kept my earphones in and the playlist on, and I woke up listening to this song by Stevie Wonder – a nice way to come back into the world:
In the middle of trying to get my house ready for going into the hospital for the operation tomorrow, I had a phone call from my surgeon. He said he’s decided to only replace one hip tomorrow rather than both. This is because of the risk of increased bleeding due to the Ehlers Danloss. Of course safety is the most important thing, but I’m still very disappointed about this. Even though they were going to decide in the operation whether to do one or both, there was still a 50=50 possibility they’d both be done. This would mean one operation and recovery period, whereas now the whole process will last twice as long, with another operation in three months. This means negotiating one operated hip, and one arthritic painful one. So it’s going to be harder and longer than I thought, but obviously need to trust the surgeon on this. Whilst being disappointed, I now need to adjust, and get myself ready to recover as well as possible from the first one, in order to establish the best base for the second one.
Through all of this, I’ve been moved by how wonderful and supportive friends and colleagues have been. It really has made a difference to the experience.
So now I need to finish getting the house sorted and packing. My flamingo t-shirt is ready to come with me! The flamingo has been a recurrent image. My good friend Pam, who’s a dancer, had a very bad accident and broke her ankle at around the same time that I was diagnosed with arthritis. We decided to go on holiday to the Canaries together that winter to get some sun, and bonded over our shared experiences. We then made a performance about this when we got back. This included reading out extracts from our doctors’ letters. Doctors don’t always really get performers, and what we do, and what we want to do. In Pam’s case she said to him that she had always wanted to learn flamenco dance, but now would be unable to do so. In the Chinese whisper from his dictation to his assistant’s typing up the letter, it became: ‘Pam is no longer able to dance the flamingo’. !! So from then on, we’ve become the two limping flamingos, as our shared joke.
The irony is that Pam needs to have another operation on her ankle. We had planned that we would support each other after our surgeries, but as things have turned out, she’s now having hers the day after mine! So we’ll be in hospital together, maybe on the same ward. So yes, there may well be another performance coming out of this at some point!
I have my playlist ready for the operation, and my audio books for afterwards (Juliet Stevenson reading ‘Middlemarch’, hooray!). I’d asked my friends on Facebook for suggestions for things to listen to and watch, so I’m going to finish now with two of James Corden’s Carpool Karaoke slots, suggested by my friend Steve. I’ve seen both before, and I’m sure they’ll be a helpful part of the recovery.
Place hands, palms flat, either side of thighs on sofa. Push down on hands, moving body to the edge of the sofa. Move the right arm over to the left side of body, just beyond left hand, beginning to twist to left. Continue turning to the left, lifting right buttock off the sofa. Continue turning to left, using hands to gradually lift body up, until facing the back of the sofa. Move the left hand to the back of the sofa, while the right hand grabs the stick. Slowly push down on the stick, while pushing back from the sofa, as body unfurls to standing.
This is the sequence of movements I’ve developed in order to stand up from my sofa. It takes about two minutes on average. Time has taken on a new experience since dealing with the physical changes. What was once an action done swiftly and without thinking – get up off the sofa – has now become a choreography of shifting weight, finding support, turning, and unravelling, each step needing full attention and slowness in order to avoid injury or falling. I’m not sure if the time spent directing theatre and choreographing dance has helped me to develop this. Certainly improvisation has been key – I’ve found novel ways of picking things up, carrying things, going up and down stairs, balancing things, that I probably wouldn’t have explored if if were not necessary in order to undertake everyday activities.
Along with the years of training in movement, dance, and martial arts, there’s also the years I spent working with teachers in Buddhism, particularly John Garrie Roshi, who worked within the Theravada Buddhist form of satipatthana, usually translated as mindfulness. Garrie Roshi himself had been an actor and performer, and developed a unique series of exercises starting from the body and breath. Performing repetitive sequences of activities – pacing, sitting, standing, slow walking – for days at time instils a discipline, as well as deep levels of attention to the minutiae of all aspects of bodymind. And in my case, often, huge resentment and frustration at having to follow a tight structure over and over. But this intense training is coming back to me now, in having to move so slowly and carefully in everything I do. Often still wtih resentment and frustration, but in having little choice, it has also been a time of exploration of living at a very different pace, different time, than was my usual rhythm before. Working with Garrie Roshi, and later with Namgyal Rimpoche, we would spend hours doing a slow walk. Moving each foot very slowly, feeling each part of the body required to shift in order to do the movement, sensing the changing textures under the feet, keeping the breathing steady, and tethering the mind to stay with focused attention on each moment. The exercise highlights the connection between body and mind, and how easily the mind can fly away from the physical base. Mindfulness has become quite a buzz term in recent years, but often this has tended to focus on an initial stage of achieving calm and relaxation. This is fine, but within Buddhist practice, this is just a first stage. The calm is established in order to lead to the next stage – vipassana, or insight. This is where realisation can happen, an embodied understanding of impermanence and non-self with each breath and step.
I certainly don’t achieve this level of experience with each step I take, but having to move slowly, and needing to focus so strongly on posture and balance in every moment, has helped to develop concentration over longer periods of time. This also helps dealing with the pain – I have to focus all the time on breathing and visualisation to help cope with the pain. This can be a very internal process – people have walked past me saying ‘hello’ and I haven’t heard or seen them as I’ve been so focused simply on the experience of walking to enable me to put one foot in front of the other.
Stand with both feet parallel, stick in right hand. Shift weight to left foot and stick. Slowly move right foot forward. Shift weight to right foot and stick. Slide left foot until both feet are parallel. Repeat.
This is my continuous experience of walking, a sequence of actions, performed in slow time, while the rest of the world seems to move past in a faster rhythm. I feel that I exist in a separate time zone to everyone else. After the operation, will I change my time zone to the same as others? Will it be a gradual shift, travelling through different zones until I catch up? Will I always feel slightly behind? Can time be changed, learned, re-learned?
In his book The Web of Life, Fritjof Capra stated that ‘over time each organism forms its unique, individual pathway of structural changes in the process of development. Since the structural changes are acts of cognition, development is always associated with learning’ (Capra: 1997, 261). I will be having major structural changes with the hip replacements, so will this lead to changes in cognition, development, learning? Biological scientist and philosopher Francisco Varela said that ‘mind and world arise together’ (in Capra: 1997, 262). So we are not separate from the environment around us, but rather are formed by and with this environment. As I change, so will my world, and vice versa. Varela himself experienced this directly when he had a liver transplant. He kept a phenomenological record of his experiences through this (‘Intimate Distances’, published in the Journal of Consciousness Studies, Vol 8, Nos 5-7, 2001). He describes his reflection on having the transplanted liver inside him after the operation:
I’ve got a foreign liver inside me. Again the question: Which me? Foreign to what? We change all the cells and molecules of a liver every few weeks. It is new again, but not foreign. The foreignness is the unsettledness of the belonging with other organs in the ongoing definition that is an organism. In that sense my old liver was already foreign; it was gradually becoming alien as it ceased to function, corroded by cirrhosis, with no other than a suspended irrigation of islands of cells, which are then left to decay and wither away.
This makes me think how I’ll feel having a non-human joint inside me, made from metal and ceramic, nothing organic. Does this make me less-than-human? Or human-hybrid? Or more-than-human? I grew up watching the 1970s version of ‘The Bionic Woman’ with Lindsay Wagner as Jamie Summers. Will I, too, become bionic, with human-made non-human parts inside me? These parts should do a better job than the bones and cartilage I have in my current body. But what will this make me? A Dr Who cyberman? Upgraded from human to better-than-human with an artificial component to enhance function? In my fantasy, being a bionic woman will enable me to run as fast and jump as high as Jamie was able to do (pre-CGI). I wish! So what else might being a bionic woman mean? I feel that the experience of satipatthana will help me explore this after the operation, with the new body leading to a new mind and world. Meanwhile, here’s a little montage of Jamie doing her bionic leaping as an incentive as I look forward to the move into a new time zone (and hope my hair will always stay as well groomed as hers in the act of jumping!):
My operation had been scheduled for 13th August. Yesterday, the hospital phoned and asked if I could switch to the 8th due to staffing issues. So now, I’m feeling rushed trying to get everything ready in time.
Living with hypermobility as a performer meant that for many years, my body was extremely flexible – I could do the splits without feeling a stretch, and get both feet around the back of my head. Yoga felt like doing a bit of a yawn. Now, I realise that the elasticity in my joints is caused by a problem with the collagen in my body, which means the joints are very stretchy, but not strong. So every time I was doing those extreme stretches, I was actually dislocating and damaging my joints. Those movements – and the pride I felt in doing them – are now haunting my body as I’ve now gone from being flexible, to very inflexible. And the years doing dance, movement, yoga and martial arts contributed to the arthritis developing at a much earlier age (I’m now 52) than it would have done otherwise. Would I have changed this with hindsight? No. The experiences I’ve had have formed me in such a way that I couldn’t imagine not having done those things, been that person, even with what I have to deal with now. But as hypermobility is becoming more widely known, it’s important for those training young dancers, gymnasts etc to be aware of the danger of over-stretching. To spot a young child with the ability to be very flexible can mean they’re plucked out for elite training, and encouraged to push the flexibility further and harder, to extreme levels, resulting potentially in damage in later years. So it’s important for trainers and coaches to have an understanding of the condition, and adapt what they do with young people accordingly. But I also know that the feeling of the over-stretching is very satisfying, and that to stop short at hyper-extending feels as frustrating as not finishing a yawn. The renowned yoga teacher Iyengar recommended that anyone with hypermobility only goes to 70% of the stretch – I found it really hard to do just this much, and stop. But now, I’m mostly capable of doing only 10%, if that much, so instead work on trying to extend the inner energy of the movement, even if the outer body can only manage it to a small extent. I’ve no idea how much more than this I’ll be able to do after the surgery.
Due to the hypermobility, I’m at a high risk of dislocation following the operation. My surgeon has decided that he’ll use a dual mobility joint as a result. The ball at the top of femur is actually a ball within a ball, so the outer ball is fixed stable within the socket, and the ball inside this outer ball is the one which moves. This reduces the range of mobility , but is much more stable as a joint, and so greatly reduces the risk of dislocation. The image below shows the difference between a standard replacement on the left, and the dual mobility one on the right.
I still find it hard to imagine that in less than a week’s time, my body will be cut open, my joints dislocated, my bones sawed into, and the artificial joint hammered and cemented in place, before muscle and skin is sewn up again. Being able to visualise the new bionic joint inside me helps to think about how to integrate it into however the new body will be.
This is why this experience is, for me, a practice-based research project. I’ll be researching my body, thoughts, and feelings as I go through the recovery process. Which starts in six days time.