“I’m Gonna Swing From The Chandelier”

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.

Statue of the goddess Durga

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!

accept -
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 –
pain    tears   stiffness  strength  life   breath –
accept – don’t - accept

My Pink Feet – Part Two

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.

A still from the ballet of The Red Shoes from the film

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
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.
Those who know have wings.

Getting Up, Walking Slow

My three feet

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!):

Walking on Knives

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,
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.
And every step I take