For many years I kept myself well hidden. Shrinking into backgrounds, not daring to have friendships and feeling generally ill at-ease with other children at school.
There were different reasons for this I am sure. But one that I remember being paramount was that I had a defect. One that drew a lot of attention especially in places like the school gym or changing rooms.
My deformity was pectus excavatum, a Latin term that means ‘hollowed chest’ also known as sunken or funnel chest. It is a congenital chest wall deformity in which several ribs and the sternum grow abnormally, producing a concave, or caved-in appearance in the anterior chest wall. It causes difficulty at times in breathing and can be very uncomfortable, particularly for girls as the time comes to find a bra that fits, works correctly and does the job needed! Mine was particularly concave and very deep, thus bras as well as breasts were more of a nuisance than something that a young teenage girl might feel a pride in.
I’m unsure if my condition was really known about when I was younger, certainly my parents never discussed it. It was simply accepted as ‘that is what I looked like.’ There was an operation developed in the 1970/’80’s and treatment of it, where you can have a metal rod attached under the sternum to force the bones to grow outwards. This is called the Nuss procedure. When I first learnt of this it was too late to consider for myself and I am happy that my parents did not resort to it, although I know it worked very well for some, and they now have normal bone structure in their chests. Some I have heard it did not work so well for, causing pain and discomfort forever after. But nonetheless I did still have difficulty breathing and never discussed this with my parents. I assumed it was normal as with many dysfunctional experiences within my family.
At night I would lie in my bed taking very deep breaths, sometimes gasping to attempt to fill my lungs and have that wonderful feeling of ‘life force’ weaving through me. I would take short breaths rapidly, I would stop breathing for periods of time, holding my breath, letting it out slowly, and trying to expand my lung space in many different ways. Sometimes this would help me sleep, but often I would be wide awake – and dreaming!
I don’t think I knew at this age it was all because of my deformity, which I was learning to keep hidden, both physically as well as in this exploration of breath and vision.
That flow of air, that I really had to work for was a Godsend. I could feel it in my cells and opening my heart to expand more and more from a tiny micro breath, to deep expansive caverns within me. It was so worth the effort. If I did not make that effort I could feel collapsed, dull, lifeless, and would sink into a dream-like deathly state.
It wasn’t all discomfort though having this condition, as a child I would enjoy moments in the bath, filling my ‘hole’ playfully with water and even as a young woman had my lover drink champagne from it! In my forties I was asked to play a role in a film. A strange women in a sexy yet horrific moment. She was dancing and putting her hands deep inside her chest to reveal her heart, in a rather strange ritual. It looked very real once edited and I rather enjoyed the experience, dancing with a gaping bloody hole in my chest for all to see, morbid yes, but suddenly my chest became a movie star! And I can assure you the blood came totally from a bottle of red dye!
I did get a little tired of people trying to correct my posture, telling me to stick out my chest more, straighten my shoulders and spine. They didn’t know of course, and I wasn’t going to endlessly explain myself and my body to them. It turned me even further against myself and made me try to hide it even more, resorting to my deep well and cave of my own darkness. I was a freak, I was weird.
And so I danced, endlessly, it was my route to freedom, it was my connection to God, it is where I breathed so much more than ever before. It is where my euphoria reached for the heavens, it is where my visions became my life line. For sure my lungs were sometimes being crippled inside their cage but I knew how to set them free.
Dancing was always the best thing for me. It opened me up and stretched me. The euphoria would linger and ‘my altered state’ would intrigue me, becoming a normal part of my life. I was conscious of this yet it felt quite ordinary to me and I assumed everyone experienced this in some shape or form. I would talk about ‘imagination’ with my parents, my father would listen but my mother thought it odd and would say things like ‘oh it’s just your imagination’ as a sort of throw away comment.
I had a pony who had broken wind, which meant she had a hole in her windpipe. This caused her to wheeze sometimes but she also needed to be kept fit, to exercise a lot and this would help her enormously. We worked together, riding the terrains and landscapes, both getting out of breath and both having to rest awhile and regain our posture, strength and ability to continue.
As I have become older it has been easier, as I have managed this assumed deformity more and more and learned to live with it. Still to this day, dance is essential, stretching is essential, keeping my bones free and supple is essential for the very necessity of being able to breathe properly. I always know when I haven’t’ done enough, it is always a reminder to me to hit the music button and ‘move,’ no matter how I feel! For all of us, no matter our condition, movement is a vital key, breathe is vital, without it for sure we die. And if, I learnt very early on, we do not breathe deep enough, our life force is not fully present then it is very difficult to relax or find enough energy.
As time moved on, I arrived within many shamanic trainings, as I found myself fascinated by what I was learning in this field. I wanted clarification on some of what I already experienced and to have some of my questions answered. I didn’t know why I was drawn to it, but something felt familiar and I remember wanting to be understood. I began to learn techniques and was given foundations and a grounding in various methods and teachings of the shamanic path. One of the teachings was about breath-work and also about visualisations. This was nothing new to me. I dropped into visualising at a ‘drop of a hat’ – in fact it was so simple I felt like I was coming across as a bit of a ‘know-it-all’ having experiences that others found difficult. I existed in those worlds that seemed so separate from anyone else’s repertoire. But it was innate in me, and I found it hard to understand why others struggled. I would begin to diminish my innate abilities because I felt they separated me from the other students. I played things down.
Dance and breath-work have given me just the right amount of movement, oxygen and understanding of my body’s needs. No pushing, no force, just gentleness. Once my body is strong and healthy then I know how much I can support my life and the lives of others. Finding my micro breath and learning to expand it has really helped me, rather than trying to force the breath in, as I felt I had to do when I was young.
But had I realised the connection between breath and my visions?
I began to feel that I was given this bone structure for a reason, I had to! There was so much I could learn about breath and about movement because of it. It actually became a teacher for me, and I learnt within that to love this part of my body, ugly though I felt it was, then. The rest of my body was fine, it bore babies and danced freely.
I learnt to be with the tiny micro, the restrictions of life, to understand sometimes that things do not need to be forced. I learnt to be patient with my body and to take time with it. I learnt how important the breath was and how sometimes we need to really respect it, feel immense gratitude for it and learn how to use it to affect different areas of the body. I learnt how deeply connected to the breath are our emotions and how to breath through everything we feel. I understood the need to breathe and release trauma and the challenges I received throughout my life. I did not dwell on these things, I moved through them with the means and visions to create a new life for myself. But I didn’t know that, not way back then. I didn’t know visualisations were not innate within us all!
Although I did not know it, I was a visionary. I was born – because of the consequences of my condition – to experience visions and much later on in life, attending shamanic gatherings and circles, I didn’t actually feel the need for the training I received, it was all second nature to me anyway. I didn’t need to be shown ‘how to,’ I was already there, it was innate within me however the framing of it was really useful and also to look at where ‘I and it’ could help others. I also wanted to be around others, to meet people who might have similar experiences. I was tired of feeling separate in a world that wanted normality. I wanted it myself at times, to fit in to be like everyone else, but I was never going to find it, no matter how hard I tried, there would always come that point in time, where I had no choice but to recognise…I was odd.
I had worked with a self professed shaman for over twenty years, who offered a form of dance which I found myself deeply immersed in. I was attending a ceremony with him, where a woman struggling in her pain was meeting the spiritual distress in herself. She lay broken and crying. I sat beside her, he came over with his shamanic implements and attire and I said to him ‘I can see what’s hurting.’ I could feel what was moving in her body, I felt the need to be there, to support her through what I knew was happening. He moved me out of the way. I had become a threat. My lifetime of medicine was not wanted in that space. I was of no use.
He told me that there was a problem with my voice, that it had a sticky energy and caused people harm. That I needed to do some work with it. I took these words harshly, my deep wound opening up and swallowing me whole. I saw it happen, I stopped breathing.
A deep anger that I could not express held me in its grip, I couldn’t even dance. I had been denied my very purpose this lifetime by someone who I had trusted to support me and my soul contract.
The following day I did nothing, except stew in my passive aggression, I dared not speak out. He felt the whip of my tail, I felt it too. So he said I had a borderline personality disorder – and he told me that he could now understand why my husband had treated me the way that he had. It was all about ‘my problem.’ He never took responsibility for his part. And when he began to insist I sat at his side instead of being at the birth of my grandson (which of course I refused) I left his self-proclaimed world that I could no longer have any respect for.
I continued my journey alone, to delve into the possibilities that lay in waiting for me to recognise, so that at some point I could fall in love with my own purpose and never fall into the hands of anyone who might abuse it because of their own insecurities.
My visual capacity was immense and continued to be so, my ability to feel into the visions, to allow them to be a physical experience, tapping into my innate kinaesthetic learning abilities, meant I would ‘be’ in these places, not just ‘seeing’ them. I was also moving towards wholeness, breathing through any difficulties I was experiencing. The breath could help me to transcend my worries, visualise the support I needed in the more spirit-realms, what I often talk about in my work, ‘to go beyond the veil’ of normal existence.
The breathing many people achieve within training, holotropic or otherwise, in classes and with healers, was what I already experienced at a very early age, I was just doing it myself and there was not much for me to learn. This was the body that I had been given by God, that my soul had chosen, that I had to work with because of its structure, I was actually training very early on, as a small child in the art of breath-work, visualisations and euphoria, the experience of pleasure with intense feelings of well-being and happiness. I was also learning this from deep in my own cave, shut away from the world, trying to fit in and yet locking myself away. I knew this cave of intelligence.
My voice was also held in place through the cage of bone structure, giving me a tiredness if I had to speak for any great length of time, often feeling uncomfortable because I couldn’t get the breaths in between the words, inhibiting me with the feelings of inferiority, yet it wanted its freedom, wanted attention, wanted to be heard. My speaking voice, my songs, my personal expression would need to find their way, their poetic language, their particular rhythm and their ability to listen into the heart space, to know in each moment how I was breathing, to capture each breath, to know it intimately and the effects it would create. I held a deep friendship with the spirit of air.
Voice, movement, breath and the landscapes of vision, riding together, just like the rider and the horse, my teenager and her pony, working together to be whole, to be complete and to be free.
So yes…pectus excavatum is a Latin term that means hollowed chest – maybe for myself, I now choose to have it called sanctum pectus…holy chest.
Your post deeply resonated with me. Though I have not been diagnosed with anything, I think I have an odd form of pectus carinatum that causes my ribs and sternum to show at all body fats. I used to try to gain weight hoping it would hide it. My mom would even tell me my ribs looked “Freaky” … (ended up with ribs and a beerbelly at one point, no sense in hiding it.) Also probably have a painless kind of Ehler’s Danlos and Triple X syndrome though I’ll never get tested.
Particularly the part… “And so I danced, endlessly, it was my route to freedom, it was my connection to God, it is where I breathed so much more than ever before. …‘oh it’s just your imagination’ as a sort of throw away comment.”
Ecstatic dance is a very important practice for me. I resonate a lot with the feelings and emotions on your journey. And just wanted to comment and know you’re seen and loved by me. As for “normal-cy” .. check my Website name “Abnormal Ways” . I let people know it is safe to be their abnormal selves. <333 Lovely story and so important to share
Thank you for sharing your story, its important we all speak out. I will certainly take a look at your website. Much love back to you, Caroline x