I have lain on my belly, on a sun warmed blanket, playing scrabble in an ancient woodland, sunlight dappling my face….with blockaded diggers roaring just ahead.
I’ve been the headline story on the 10 o’clock news.
I’ve been stood up, forced down and vilified and sanctified.
I’ve been held down, tied up and trapped – in a tiny cell, and within my own body.
Now, I’m fighting to free myself.
When I first began this journey, I was just 18. Sunburned, laughing, carefree…and then, suddenly, my body stopped working as it always had. Everything fell apart.
But now, each day, I am learning how to live, in freedom, with chronic illness.
So often we loose our identity in illness. We can be subsumed by diagnosis when everyone around us is paying more attention to how (and whether) we will survive it. It can be incredibly difficult to truly live in this space. How do we live our lives as women with health challenges?
Demote the illness.
It’s really not that big a deal.
Even if it hurts you every day. Even if you can’t surf anymore. Even if it’s killing you. Your illness isn’t really that big a deal…compared to all of the other things that make up something more powerful and magnificent: YOU.
You are so much more than any illness ever could be. Whatever illness you have has nothing on your amazingness. You can relegate the illness down to the footnotes. After all, you are the adventure story!
The question isn’t whether you can afford it, but how much you want it.
I used to look at something I wanted and my first thought would be, “do I have enough money?” It was the same story with my illness: I didn’t dare want, hope or dream things because I shied away from the seemingly inevitable pain that arose when I was too ill to follow through on them. (If I don’t hope perhaps disappointment can’t hurt me.)
Slowly, my approach has changed. Now, I tend to look at how much I want to do something, because I have learned there is always a way.
Can’t get your wheelchair up that mountain? Find a friendly warden with a land-rover to help you climb those roads. Not accessible doesn’t have to mean not accessible. Not for the resourceful or imaginative! (I spent most of my university time going up and down stairs on my bottom, like a toddler or being carried, new bride style, between the classrooms by my husband.) Do it your way. Make your own rules.
You aren’t broken.
We all want to be the best person we can be (with a ‘yoga body’ thrown in for good measure), but consider where over zealous self development can move you. The belief that one can heal all of the ills in their own life and body is empowering – but also has its drawbacks.
Self blame, misplaced feelings of inadequacy and guilt – “What did I do to get sick?”, “Who didn’t I forgive?”, “Did my autoimmune illness develop when I didn’t express my anger when Jenny stole my tamagotchi in school?”- is a destructive mindset, and one to avoid at all costs.
I am against all blaming of the victim or the patient; it feels wrong and sets a dangerous precedent.
Self – development is alluring because it feels empowering. Believing we have control over our lives and bodies gives hope – but it can be guilt inducing. The opposite extreme, abdicating responsibility and believing that things happen to us, that we have no power and no say in how we live, is disempowering and also dangerous.
There is a middle ground: embracing that you aren’t imperfect and broken, just that you are. And that is enough.
If this is it, what do you do right now?
If you weren’t focused on healing, if you weren’t expending energy trying to be “ok”, to be ‘normal’, to be as you were before the accident/the diagnosis/the crisis… What would you do?
Forget, for a moment, the image of your ideal you. What if how you are right now –
Scars, sore joints, frozen legs and fragile bones, stretch marks, short breath and spiraling thoughts
– is everything? How are you going to work with this? If this is the norm, how are you going to explore – and revel in the existence – of this, the body you are living in?
Blaze a trail
You don’t have to get well to live well.
Yes, it is harder to live well with chronic pain or illnesses that can disrupt plans at any moment. But it’s possible.
I’ve done it. So can you.
I wondered how I’d build a business while ill, but soon realized everyone has restrictions and struggles. What’s the difference between being limited by a day job or a disability? They both constrain your time, energy and abilities. Your illness is just another part of your life.
Don’t know if your dream is possible because you’ve never seen anyone else do it? You are a Trail Blazer.
Fed up with being defined and imprisoned by your illness? Ready to step off the beaten track and forge a new way to live – really live – with illness? You are a Trail Blazer.
Fifty years ago, I couldn’t have built my business. In fact, I may not have lived at all.
I – we! – are forging new trails for ourselves. And for the women who come after us.
We need to allow healing while prioritising freedom. I do this, consciously, everyday.
From stepping out bravely, camera in hand, to joining an accessible judo class, I am learning to celebrate the body I have now, not the one I hope to heal into.
That is my leading edge. I’ve spent years doing nose-to-the-grindstone healing work and now I’m allowing the freedom and unique opportunities available to heal me too.
I’d love for you to join me….
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