Delays and Dreams

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.

Four Weeks Later… reflections and shadow walking

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 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!

Two weeks later… Being A Good Patient, and What Katy Did and Lost

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.

Illustration of Katy and Cousin Helen from ‘What Katy Did’

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.
And I’m glad of it.

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.

One hip at a time…

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.

See you on the other side!

Less than a week to go….

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.

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