Recently I’ve been enjoying new Dutch music. A friend has been introducing me to Dutch artists and then Spotify suggests more. It’s interesting how many write in English and often I think lyricists have to work harder when they’re writing in a second language, and sometimes I find songs which are more poetic and clever. One track in my twitter DM inbox is by the band Kensington and called Uncharted. The song was written after a member of the band lost someone close in a car crash, but could so easily be a reflection on living with chronic illness, which is why my friend sent me the link. It feels like an insight into the current global pandemic also.

No one knows just what to say

It’s like we’re in uncharted territory
No one knows the proper way
It’s like the ground has fallen from under me

I’ve been specifically thinking about life with ME and this idea of never really knowing what lies ahead. There’s no clearly defined path or course or treatment. There are no stats on the effectiveness of treatment or percentages for recovery as a treatment outcome because there’s no treatment for the condition, only sometimes the symptoms. And so each day we wake up not really knowing what sort of day it’s going to be or what small tasks we may or may not accomplish. There’s no precise GPS guidance or shipping route, or even a treacherous northwest passage, only small incremental stabs in the dark based on what others might have found helpful. We constantly have to adapt when our condition worsens and take extreme caution when it improves. 

And all sensible words

All sensible hearts
Oh, where do they go?
And why do they leave us now?

And if I could go back again

I’ll go back again
If the worst is happening
How does anything work?
Now let me please go back again
I’ll go back again

For those of us with ME, the song points to a lack of basic empathy for so many who have been given damaging advice from medical professionals who often defer to guidance than really listen to the individual who’s in front of them. And then, we reflect on the mixture of emotions and bargaining that comes with the contrast of knowing the life we did lead and the seemingly non-life we’re faced with each day.

Recently on Twitter I mentioned how writing this blog helps me find meaning in life and I asked others what gave them meaning. Since becoming ill two years ago, when I’ve been able, I’ve spent time trying to make sense of this illness and how to exist with it. I’ve re-evaluated religious faith and how (and if) suffering fits within a complex Christian framework, I’ve learnt some philosophy and appreciated Buddhism and been intrigued by non-dual spirituality. On a practical level, I can attempt to manage the fatigue, try to eat the right things, experiment with medication which may alleviate symptoms, yet on an emotional, cognitive and existential level I have to find a foundation on which to build this alternative reality which life has thrown at me. It’s easy to conclude that maybe it’s best not to think about it because the grief can be overwhelming. However, I’m not sure repression is ever a good thing. 

No one knows another way

It’s like all grace in life has parted from me

In discussing the matter of meaning on Twitter, I found such a range of responses in how individuals viewed their life limitations and whether they could find meaning despite the extreme challenges. Some found meaning in writing, art, family, pets. Others shared honestly that life is bleak and they really don’t find meaning in any part of their life. This really can be a hollow existence at times. I think it is important to recognise that for many within the chronic illness community it feels that life isn’t worth living unless a recognised treatment is found in the medium term. We’re all at different places and it’s important to hold space for each other, even if the conversation is difficult. 

And if I could go back again

I’ll go back again (I’ll go back again, I’ll go back again). 

The reality with ME and other incurable illnesses is that we simply can’t go back. I’ve often wondered how life would be if I hadn’t become ill on the 24th January 2018. In all honesty, I think my kids are happier and more settled and my wife and I have a better relationship because either one of us was often at work previously. Yet I’d still go back again in a heartbeat if it meant I could walk up a hill with my kids or stand in a busy bar with friends, or even just have a shower without having to lie down afterwards! 

Recently I’ve struggled with my baseline dropping. There’s a threshold I seem to hit whereby I need a walking stick in the house. When I drop below this level my outlook and overall mood and positivity drops and it’s so much harder to find meaning as I’m someone who needs creativity in my life. It’s pretty hard to be creative when you can’t even lift your mobile phone, never mind your digital camera. When I move above this invisible relegation zone things start to give me joy again. The fog of exhaustion lifts just enough to see the water droplets on a leaf and meditate on the beauty found there. Vlad Vexler, in one of his recent video diaries said for him, it’s about something as simple as feeling the rain on his back. Those moments need to be savoured because we honestly don’t know when we might next have that experience. 

Somehow, when we’re in uncharted territory, the baseline drops and we’re up a metaphorical creek without a paddle, we have to just hold on for dear life and wait. 

May we wait with fortitude, that is, courage in pain and adversity. Stickability. If we can’t, that’s ok, but may we allow our chronic illness friends hold on to us with empathy until we can return the favour. Because on rare mornings when the fog lifts we can know that there’s something precious to be found in life itself. We can’t go back again and looking forward is sometimes too painful, so, as spiritual teacher Eckhart Tolle says, may we realize deeply that the present moment is all we ever have and that there is power in now.

Music video:

https://youtu.be/1UExYh_vec4

Vlad’s diary:

https://twitter.com/VladVexler/status/1273621358916878341?s=19