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