Friday 2 November 2012

Be the change

Day II: Find a quote and use it as inspiration
(originally part of National Health Blog Post Month, 2012) 

Well I didn't exactly find this quote. I mean I know I did years ago, but I can't for the life of me recall the circumstances that surrounded it's discovery. But it is the one quote that has resonated with me since back in the days when I still had perky boobs and a bum that was closer to my lower back than the back of my knees. 

"You must be the change 
you wish to see in the world" 
Mahatma Ghandi

12 words that changed my perspective on the world. 12 words spoken by one man on the otherside of the world, living a life far removed from anything within my limited experience growing up in rural Australia. Yet without fail it's the first quote that comes to mind when I think in terms of inspiration. And it is the one quote that has had a central place in my life even when I wasn't consciously aware of it's influence.

I wrote these words on the mirror in my boys' bathroom when they were little. I wanted them to see it morning and night as they brushed their teeth. A subliminal message that would become part of their internal dialogue long after they left the nest. A way of being in the world. Of interacting with others. Of letting them know that whatever is going on around them, they still have the power of choice. The power to effect meaningful change on the world around them. In a world of disconnection and world issues that often seem insurmountable, this is an important message.

It makes change accessible. 

It makes change possible. 

It gives each of us back a level of control that life circumstances can sometimes seem to take away.

Being ill and increasingly homebound I know that for a long time I felt that I had no power. Despite having written this quote on my sons' mirror and having seen it every time I cleaned their bathroom or wiped the flicked toothpaste and general mouth gunge, from around the letters, I forgot the message. I became lost in my own misery as my life slowly imploded. I began to believe the crappy voices in my head that made me feel helpless.

I'm not quite sure when or even why that feeling started to dissipate. But slowly and surely over time it did. Something inside me said enough and the unconscious effect of Ghandi's words began to influence me once more.

For me his message is not about trying to effect change in others, instead that in taking responsibility for the way you interact with world, you can effect change around you. Be it in how you think, feel or act. The power is back in the hands of each individual and one person can make a difference. What I have learnt over the last six years is that change doesn't always look like what you thought it would. That you need to open yourself up to a world of possibilities, many of which may be a little left of centre.

Before I became ill I always thought about Ghandi's change in the form of big gestures. I had dreams of doing a year of volunteering overseas, complete with my family. Having travelled throughout Vietnam I always wanted to go back and work with one of the many aid projects that were running. I wanted to go to the third world, especially countries that had been war zones and start neuropsychological and TBI rehabilitation programs, which are sorely lacking. Closer to home, I wanted to change how dementia was assessed and treated in our health system. To develop holistic treatment plans and make behaviour management and long term rehabilitation a true funded reality of the care model. And then I became ill and all those dreams slipped away.

These days I can no longer travel, even to head into the city, a 45 minute trip, for a medical appointment is a logistical and physical nightmare. I don't have the health, energy or cognitive wherewithall to manage such extensive programs as I once envisioned. I've had to re-evaluate what I think of as change.

What I have learned is that change can take many forms and sometimes the small things are the most meaningful. Whilst a cure or even adequate management would be nice, it's not actually at the top of my list. What I want now is peace and joy. I want kindness and grace. I want to enjoy the world and my life no matter what my body is doing and I want that for others in the same boat. And what Ghandi's words tell me is that I can be that change. That change is a choice we are all responsible to make. And it is a change I can share with others. I can go through the world with an open heart or close myself off. I can find joy in the small things or lament all that has been lost or changed. I can see a world full of enemies or believe that there is more good in the world than bad. I can sit back and blame my behaviour on others, or take responsibility for what I say and do.

It's not about being always perfect or running around in permanent perky mode. We all mess up, we all have bad times or make mistakes. But it is about lifting yourself up and trying again. In many ways I know I have internalised Ghandi's message over the years, it simply got misplaced for a while when my health and world began to de-stabalise.

Now I face my illness and breaking body by embracing the good parts of life. By having a laugh when I least feel like it. By embracing the freedom that being ill has given me (I know that sounds crazy, but it's true). I can wallow and make myself and everyone around me miserable or share the laughs and the crazy with others that they too may get a laugh and some relief, even for a minute. Through this blog or through a quick message on a FB page or through my daily interactions I can raise awareness, or make someone laugh, or simply listen so someone else feels heard. I can give to others what helps me, not in expectation of any return but because it's how I want to be in the world. Those small changes, making someone smile or laugh are just as important as the big statement changes I had hoped to make in my pre-ill life.

Raising awareness about Dysautonomia is one of the changes I'd like to make. I'd love to have the term become as well known as 'cancer' which carries it's own extensive information package about things like seriousness and even treatment, with that single word. To not have to explain it every day. To not have patients fall between the cracks as doctors don't know how to recognize or diagnose the disorders. But my big drive is to help others dealing with the condition. To make things more bearable  To normalise experiences and take away some of the fear. In any holistic treatment model, issues relating to the psychological, emotional and social changes, are just as important as the physical treatments. And those changes can be made with every smile or laugh or ability to sit back and breathe. And each of those people can pay it forward, one smile or one laugh at a time. Until one become two becomes four.......becomes thousands. What starts with one person can change the world.

The jaded part of me thinks my own idea is all very Pollyanna, but the other and these days louder part of me thinks about the possibilities in Ghandi's words. I can sit back and wait for change or I can live how I want that change to be. And you never know it just may start something great.

Michelle :)

1 comment:

  1. I have a friend with MS. She has been wheelchair-bound for at least 30 years. She lives each day to the fullest, participates in anything going, spreads smiles and praise wherever she goes. I'm sure she has bad days, but she never talks about them. That strategy is not right for everyone, most of us need to let off steam from time to time, have a good cry, scream or moan, but it seems to work for her. If anything sums up my friend it is your quote of the day today. It has made me think of her and smile and be happy she is in my life.
    Thank you for sharing your thoughts.


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