Our illuminating

Our farm track after rain and snow this week

I haven’t blogged here for a while. I’m not sure if it’s just been lack of inspiration, or the busyness of trying to keep my head above the water with my kids being at home and trying to support them with remote learning, while trying to find time to rest and my wife also working from home so there’s always a buzz around the house. I know a lot of families have struggled, as we have at times, but it’s also been a time of bonding and enjoyment for us.

We do have the benefit of living in the countryside and the kids will often go out and take the dog for a walk without me having to worry about them, so we’re in a very fortunate environment to be living in lockdown!

While I haven’t blogged much recently, I did feel that I wanted to pick up my guitar again and I received new strings for Christmas. I felt an urge to write a song this past week, and having not played or sung much in the last year, it felt refreshing to briefly have the energy to play and record what I’d created.

My inspiration for this song came out of the recent difficulties people with long covid are experiencing in finding that they, like those of us with ME have found for many years, are often being disbelieved or expected to exercise their way out of their condition. Those of us with ME have great empathy for long covid patients and had a sickened feeling when we discovered that graded exercise is included in recommendations for recovery. So many of us were very grateful for the recent article by George Monbiot highlighting the battle those of us with ME have faced and how effective research needed to be a high priority for both cohorts.

So my song is about medical gaslighting and ME, but it could be applied to any circumstance where there is abuse of power. While we can’t be encouraged that there will be a culture change any time soon, we can look to those in our communities who shine a light for justice and hope. One of those people for me is Whitney Dafoe, a young man with severe ME who has recently been able to write his thoughts down and be a massive encouragement, that through the work of his father, prof. Ron Davis at Stanford University and his team, there just may be progress in finding diagnostic tools, and somewhere down the line, eventually an effective treatment. We can also be hopeful that the forthcoming DecodeME study will be fruitful as we post our saliva samples for inclusion in the year ahead.

So, never give up dreaming. When I think of the things I want to do if ever I get the chance to recover, they are simple things… Hill walking with my kids, a night away with my wife and maybe the odd folk gig with my brother. I’d love to return to my social work career, but that’s not a priority when compared to the desire to do the things that make life worth living.

In the meantime though, it’s our own illumination that keeps us going. I’m forever grateful for my ME friends who just get it and how as a community we keep each other going and bring light despite the darkness.


Our illuminating

Runaway Runaway
They got your head
So runaway runaway
You’ll keep your heart
Don’t play the game play the game
You can’t keep their healing

Runaway Runaway
They got your head
So runaway runaway
You’ll keep your heart
won’t you stay won’t you stay
With me, tonight we’re dreaming

Tonight we’re dreaming

Skip the park and the play
There’s no returning
There’s no lamp and there’s no path
Just our illuminating
Just our illuminating

Hold true, they don’t have you where they want you
Stay strong because you have it all inside you
So never give up dreaming

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