First holiday with Dystonia

I’ve just come back from a week in Bali and thought I’d share some of my experience with you. 

Well, it was challenging and stressful - as expected. 

But it was also beautiful and at times made me feel alive and free and connected. To my family and to the friendly Balinese people. Maybe even to the wider world. 

I had a fairly quiet time overall and didn’t join my family for shopping trips but I was happy lying by the pool, swimming, getting massages and eating delicious meals. 

Sometimes I just pushed through and did stuff even though it was hard. 

My kids hired a Jetski and I said I want 5 mins on it. Everyone objected, but it wasn’t that hard because I could turn my body sideways and the water was mirror-smooth and there was nothing around to crash into anyway. 

A 5-minute thrill that made me feel less incapacitated for a moment. More than that: Alive. 

But when one of my sisters back home heard about she said ‘Well he’s made a miraculous recovery hasn’t he?’

That came out as mean, but sometimes even good-intentioned people don’t get it either. 

If I’m smiling and joking they think ‘Gee you’re doing well’ and only I’d know just how hard I was struggling to keep going. 

By the end of each day, it was hard to join my family for dinner but a couple of cocktails really helped me get through the discomfort. 

Maybe not a sustainable solution for everyday life, but those cocktails didn’t just make the evening better, they made it possible. 

If I was a Dr I’d make that my medical advice.

Let it go. Just for a moment. It’s ok. Do what you need to do. 

There was so much I worried about before going away: the passport photo, the airport transit, the flights, and taking controlled medications into Indonesia. 

And yes, these were all difficult. But in the end, there were ways to tackle each of these problems and repeatedly I found people accommodating. 

And that my worries were often bigger than the reality. 

I’m grateful that there are parts of the world that feel like paradise when it surely is far from that for a great many people. 

Such tranquillity, peace and harmony while in other parts of the world, there are wars - old ones and new ones beginning - causing immense destruction and suffering. 

And such a difference between wealth and poverty. I was happy to be as generous as I could be (it’s not that hard when my Aussie $10 is a good day's wage - maybe two - for most people in Bali). 

I asked the taxi driver how they coped during the pandemic: “We stop eating the chicken and eat only the egg. Then we cut egg. Half for each child.”

Both they and I were grateful I could travel. For a while there, during the pandemic, it didn’t seem like it would be possible to fly anywhere ever again. 

Such light and shade. 

Sometimes feeling immeasurably blessed and grateful for all I have and for this world and the best of what it has to offer. 

Sometimes feeling wretched, contorted and in pain. 

So much missed from moment to moment due to my twisted neck. 

Everyone is looking up and around at the buildings, the trees, the sky. None of them have studied the pavement and the bottom of things as constantly as I have. For better and worse. 

It was a highlight to fossick around on a Bali beach in the low tide and see amazing creatures that I’ve never seen before. Nature is so curious and weird and delightful when you get up close. 

But then the plastic and rubbish washing up with every tide and spoiling the delight. The locals would rake the shore each day so the tourists didn’t have to see it. 

They said the weather was hotter and there was less rain than normal. It was humid but still everything was dry. Climate change. 

Light and shade. There is no doubt this Dystonia sucks big time. I look through the photos and hate seeing myself always twisted to the left. I don’t know if it will ever feel natural and not awkward.

But those photos weren’t capturing the true best moments, the moments where I could lose myself and feel carefree. Those moments happened when the camera wasn’t watching. 

And then home again. To our dog who is as happy to see us as we are to see her. And it feels good.