Recently I was diagnosed with Ankylosing Spondylitis, but it was a long time coming and is but a small stage in my interesting journey understanding health (in all senses of the word) and pursuing vitality.
With my diagnosis I’ve been turning my coaching eye onto myself and so many things are connecting for me right now, especially as I listen to podcasts and hear others’ journeys with AS. I wanted to contribute to the blogging space with my own learnings and journey, and add my “me too!” to a few stories out there, especially when it comes to the connection between our own pasts, upbringing, and energy, and our pain.
I am seeing so many similarities between my own background and those of others on the AS journey, and I think that the more people share their story, the more they help others understand their own path back to health and vitality, and spark that creative problem solving process. Everyone’s AS is so unique, yet many have similar strands and stories and themes.
Though it is important not to live in the past, gaining a bit of understanding about it can illuminate the way forward and help us write new chapters in our book, without getting stuck in repeating patterns or unconscious ways. We can intentionally choose different ways, and reject that which no longer helps us on our new path to wellness.
Today I wanted to write about something I am seeing emerge in people’s AS stories (not all stories, but it IS a common trend) and connect it with some things I’ve learned as a coach.
Energy, Dispositions and the Body’s Messaging System of Pain.
Today I wanted to talk about dispositions. You can call it energy, or vibes, but those words don’t adequately explain it, because the word “disposition” also describes someone’s physical, mental, emotional, spiritual presence as well. Those of you who are into body language will find this an interesting one. As a coach I believe that we don’t exist simply on an intellectual level. We exist in a body, we exist in an emotional space, and we exist in a soul or spiritual space. We spend different amounts of time in each space. Some people are deeply integrated on an intellectual and body level, or perhaps an emotional level and body level. Others are not. Everyone has unique combinations of where they spend their time and awareness. I USED to be strictly intellectual, no emotions, total logic. My journey has been learning to embrace the other parts and integrate them all as a whole.
How is energy, disposition and posture important to Ankylosing Spondylitis?
For those of us with AS, an important theme is the hard-charging, forward-pushing type. In coach school they called this the “resolute” disposition. I wasn’t entirely surprised when listening to podcasts, I heard many stories about AS victors talking about this aspect of themselves especially in their childhood and earlier years pre-diagnosis.
Someone with this energy is dynamic, driven, motivated, always growing, pushing forward and knocking down obstacles left right and centre. Even as a child, they remember getting frustrated with homework they didn’t understand, having standards for themselves, maybe loving competition and they were noted for their enthusiasm and achievement in various areas. They wanted challenging things. They were also quite anxious at times.
This is a disposition that society looks upon favourably. Especially corporate environments. Gogogo! Energy! Achieve! Merit! Recognition! The ego loves this stuff.
I want to outline that we are born with innate dispositions but they can also be nurtured through our external environment – whether that is family, media, culture or society.
I myself had a fair degree of these inborn characteristics, but they were nurtured to the extreme, which led to an early life full of pressure, perfectionism, anxiety and high standards in every sense of the word. I was a model student, involved and checked off all of the successful boxes.
Where the disposition piece gets fascinating is how it shows up in the body. Our emotional, spiritual and intellectual environment doesn’t just exist in the brain. The brain is just a funny little device connected to another 5-6 feet of body, and it is not separate from all of those other cells.
So how does this kind of forward-charging energy show up in the body? I think we can all guess!
Common sense tells us this is someone who likes to move forward and upward in life. Have you seen the body language and positioning of someone like this? Walking through the crowds with purpose, head pitched forward, getting stuff done. Leaning forward, enthusiastically?
But what if you are also strongly pressured to be like this from the external environment?
Disease means dis-ease. Not at ease. Not in our natural way of being.
I think this is really when we get into pain and disease (disease means dis-ease, not at ease, not in line with our natural way of being.)
What if we are being pushed into this way of being?
What if we enter an unhealthy degree or an extreme of this disposition?
If you want someone to go forward, get shit done, and you were standing behind them, where would you want to push with your hands? Right in the middle of the back. The thoracic spine.
Funnily enough, this is ground zero of my pain. The back is ground zero for many of us with AS.
I had some of these forward-moving qualities but then was pushed hard. Then it snowballed, because I began to associate pushing hard and achieving with gaining attention and love from those I wanted love from the most (parents.) When you connect something intellectually, emotionally and physically it becomes deeply entrenched in the body.
I believe years of this has contributed to the disease symptoms presenting themselvesin my spine.
An interesting thing about healing the body and the complexity of Ankylosing Spondylitis, is that you become immersed in learning about different modalities and what each area of the body represents. We learn that yes, we exist on different landscapes other than simply intellectual. There is something to be said about emotion, energy, the soul and spirit. We learn that western medicine can’t always pick up on a clear physical symptom, and our clinical tools and knowledge are not quite there yet. We learn that a large part of this journey is learning, and that learning is up to us.
As I began to untangle my thoracic spine pain on different levels, and what it may mean I learnt about other modalities and what they have to say about the spine.
I admit I haven’t learnt a lot, but I did become interested in the chakras. The chakras are particularly fascinating, because they weave together the experience of pain in the body, but also the emotional experiences we have.
As soon as you start reading about the heart chakra, located around the same area as the thoracic vertebrae, things begin to connect. Pain and personal story interweave.
The heart chakra is about loving not only others, but yourself. Many people with AS talk about their struggles to love and appreciate and be gentle with themselves. The heart chakra is also about reconnecting with yourself. Forward chargers are so connected with the external world, with ego, recognition, benchmarks, that they forget about that part so easily. Again, I speak from experience in my teens and 20s.
Torticullis was a Turning Point:
Another story: Earlier this year, the disease affected my neck in a nasty way, which wound up in a few acute torticullis attacks that sent me to the emergency room – they were probably the most pain I’ve ever been in. I really connected with Sky Denton (AS victor) and his story about being unable to sit up out of bed with neck pain. It was such a low for me, and was probably a key incident that made me take my symptoms more seriously and advocate for myself in the medical system.
Again, I traced back through emotion, story, soul and pain to understand this area of the body and try and draw some connections. How am I healing this year? Why am I experiencing massive pain in this area? What might it be hinting at?
In eastern medicine, this area of the body ties in with the throat chakra. What does it represent? Self-expression, having a voice, speaking the truth of who you are, authenticity.
This was an interesting discovery, because something that has been on my mind this third maternity leave, and something I am trying to embrace, is speaking my voice, blogging, instagramming and sharing my truth. I feel a really strong urge to write and connect through story, and share. Reading others’ blogs has been so, so important to my own self-growth and development that I want to give back – but it takes vulnerability and courage. The internet is a harsh place and we are all scared of being judged, or that troll waiting to hurt us with a stinging comment. I’ve been trying to follow the whisper that says “share your story” because it feels right intuitively, but not without trepidation.
I grew up in a family where my voice and opinions were disregarded even though I felt I had valuable things to contribute. Over the years I learnt to suck everything up, not share things and protect my inner fortress, and that is a process I am learning to reverse now. I’ve come to understand that the neck flare-ups this year are not tragic, terrible things but messages that I am on the right path, and that I am dispersing that negative, inflammatory energy through finally granting myself a voice and the authority to speak. That torticullis attack was, in a way, saying “yes, you are on the right track with thinking about opening up, but you really need to embrace it and DO IT” Everything is unfolding for a reason, and nothing is a coincedence, and that friends, is the key lesson of the AS Journey. It’s all meant to be, and we are meant to uncover the meaning.