Zizi’s journey of healing

I would like to share how I have experienced Zizi’s journey of healing since having her Dystonia and how she feels living with “her energy” rather than being pushed by external influences has assisted and supported her.

I am the carer for Zizi who has trauma induced segmental dystonia. I think that’s the best way to describe her medical condition. Like many who have this strange weird ‘friend’ she was an active woman, (assistant manager in retail), wonderful cook, preserver of many different pickles and jams, enjoyed house renovating, gardening, cross stitch, the beach, sailing, the list goes on.
Since a vehicle accident she was a passenger in, much has changed and much has improved. I say improved, as this is the journey I wish to share with you. 
As you all know, Dystonia is a challenge to say the least but while we initially had to struggle with the roller coaster of emotional swings from the initial shock of it just happening one night and wondering if this was how her hand, arm neck would remain in full cramped position forever, to a GP who didn’t have a clue, different specialists with the same high fees but expertise that varied from ‘don’t know’ to ‘not sure’, one aspect of her life has not only remained but  grown.

It is her acceptance of her Self. Not as a dystonia sufferer or less capable or now not who she was, all of which on one level is true, but as someone who has remained who she truly is within. Someone whose light hasn’t been shadowed by the sometimes overwhelming influences she has encountered and that could take her into anxiety, depression and self doubt.

I will premise what I am writing as my experience and as witness to my wife who has been dealing with her dystonia since 2011.

Science tells us that “everything is a form of energy” and that as such we also have the choice to determine what energy we live with. If we are driven by external influences, both good and bad we become a swinging pendulum depending on the emotion we have chosen to react to. It is also recognised that stress, anxiety and most of all exhaustion are major contributors to ill health.

Physiological exhaustion is a (relatively) new science that shows how we are and what we take on emotionally will either support or be detrimental to our well being and the (inner) health of our various organs. Anger for instance will deplete our liver; anxiety affects the health of our kidneys.

And while there is a place for existing medicine to assist us greatly, I believe we are also the masters of our own chemistry. Zizi and I have found the choices one makes, also make the body we live with and while I see every day the affect that dystonia has on her, I also see the energetic way she responds, sustains not just her beautiful “presence” but helps greatly with her dystonia management.  

The way she chooses to be creates an energy within her that not only manages her spasm/storm times but we have seen them occur less. Yes she still has a long way to go, yes the spasms can be triggered by a variety of actions, or after she has pushed herself too much  and they are painful but in essence she has learned to love herself more fully – first. Not after me, her kids, her Mum & Dad or anyone else, but herself first. She is not her dystonia, she is “who she is in-truth” first.

We have seen that to assist in healing it is better to also stop what is harmful to us. Of course this sounds simple and obvious but just how much do we take on of other peoples emotional stuff, place our self last, or eat and drink foods that we know are detrimental to our health? More than we realise, we found.

So it is a process of discarding that which we know and feel is not honouring and supporting who we are In-Truth, to stop being who we think we have to be to be accepted or recognised by others. And this is a big one as many old patterns of our behaviour are established from seeking approval from parents or others and wanting to be ‘accepted’, (approved of by others)

It’s about being true to “who she is”. It is not just to manage a part of ones life (like an illness for instance), or allowing it to be who you now are – but rather to observe any external influence and not to absorb them so they become draining. 

We have seen the energy of fear, anger, resentment etc., having a detrimental effect on her body, both internal and external which sooner or later will surface and add to the disorder even more. So a profound part of her healing has also been to remove that which does not support who she is.

Just in case you’re wondering, Zizi and I do not subscribe or belong to any group, religious or otherwise.

 We have chosen (as best we can) to live in a way that honours who we are. Again (as best we can), we do not allow our self to be governed or driven by something that separates us from who we truly are within. Think about how many times something external changes you, as even being very happy one minute then sad the next, pushes and pulls you around as though you are powerless. 

Sure Zizi, like anyone, feels sadness when she sees suffering etc, but trying not to allow this to “occupy” her or “deplete” her ongoing, as these emotions so easily can, is a change that I have not only shared with her, but I have noticed the subtle but profound affect on her well being and her dystonia.
Zizi has always been a beautiful heart, a shining Light and since her dystonia, as everyone who has it knows, the change to one’s life is in everything you do, every minute of the day. Her spasms happen anytime with or without a physical trigger, however we have noted, like many do, the signs and times that can cause an attack.
We have also seen the shift in her pain, stiffness etc., after giving more to herself rather than dragging this extra burden along, she has found a way to manage her health and while living with her spasms, she has a fullness to her life that has enriched her and we have seen, improved her well being. She can physically do a little more and has resumed cross-stitching and crochet to exercise and re-train her hands and arms to accept activity without cramping. Yep, it still happens, while the tremors are still ever present and the neck restriction is still there the severe torticollis happens but not every day now.
Zizi's journey of healing DystoniaWe have come to learn that when you place limits on yourself, you also place limits on what you can receive from the true source of which you are – Love.

Just to clarify I don’t mean that self Love is to be selfish, but to feel and honour who you are truly without the ‘if’s’, ‘but’s’ and ‘could be’’ and ‘one day’ excuses we allow ourselves and by placing that expression first, you honour who you are. It is not to say I am selfish, but just the opposite – “if I come to you angry, fearful, emotionally drained etc., what quality of me is it that I have to give to you?”

This is a ‘Zizism’ I have been inspired by.

And if I live with any of these emotions, all of which have an “energy”, what is driving me? And how does this energy affect my health?

We all know stress is bad for us and so we have seen any situation that causes us to separate from “who we are”, builds ill health if we continue to live like this.

It is not to place judgement on any other person or to reduce a tragedy of events or personal illness, it is to try as best we can to not “absorb” these situations so we can live in service to our Self and therefore to everyone we meet. An amazing quality I have had the privilege to share with her.

Is this just a good coping mechanism? Well we have seen that it works, but it is more than that, it is our way of living as we can’t see how we can be different people for different situations and that to be influenced by the mind / brain only denies our relationship with our true Heart – to put it simply:

If you live true to who you are, it will serve you, if you do not and live to seek “acceptance and recognition” from others, and deny you, this will not serve you.

Dystonia provided a stop question, one that Zizi could either answer with anger and resentment, or one that allowed her to continue her journey to rediscover more of who she is within and draw from her inner-heart of love, where to truly love oneself first is also the greatest gift you can give another.

As it is better to be with you in the fullness of love rather than in the emptiness of anger, sadness or drained from exhaustion, stress and resentment – all of which only fuel the anxiety and stress of our body’s health. 

As we have found, Zizi is very sensitive to most drugs, so meds have not been successful for her at all. Yes she has tried endep, bombed her out big time, Tremol, dizzy, vomiting, Clonazepam, a better one but still zonked her out, Artane, good for the tremors, but made her very sensitive to sunlight, acted as a hallucinogen as well.

It seems specialists can only take yet another drug off the shelf and give it a go. Botox is of great relief to many, however due to Zizi’s C5/6, C6/7 neck fusions Dr O’Sullivan who is the muscle movement botox specialist was not recommending it as it could give her head droop as well which would place extra pressure on the plates in her neck. What the side pulling of her latterocollis does we don’t know.

An added complication for Zizi is that we can only determine that her dystonia was (accident) trauma induced, as a result of whiplash from her car accident and while trauma is widely acknowledged overseas, here in Australia most specialists sit on the fence. Why did her dystonia start, remains a mystery to the medical profession.

So she has remained a la naturale and hasn’t had the relief meds can provide, but as they only mask the disorder, she has found other ways and I must say they have inspired me… as well as assisted her greatly.

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