I’ve lost count of the number of governance meetings whose silent aims are performative. The data are typically very clear – maybe it’s slow recruitment, missing data, unusable endpoints or an out of control budget. We can all see the metrics and yet as a governance organism, the hesitation to act is palpable.
I have always found this hesitation foreign. I’m the person calling out the naked emperor. I can’t help myself – with my digging into performance metrics, looking for the root cause and in the process, making the governance squeamish. I hold a simple belief – I choose to confront the ugly reality, to name my nemesis. I act as a spark in these meetings. Leveraging Design Thinking, what are the problems we need to solve? What does success look like? And what is the risk of inaction?
When I was in the position where my dystonia was twisting me into knots, botulinum toxin was poisoning my days and my lower spine was turning into a slinky, I was in the harshest reality. My doctors reminded me of the hesitant, performative governance. Let’s wait longer. Let’s try more botulinum. Let’s watch.
And I was NOT HAVING IT. To be fair to my doctors, brain surgery is insane. But in digging through my data, which consisted of videos taken by my running crew (who are simply amazing), my dystonia was progressing faster than a runaway roller coaster. No one wants bad news – but I held true to my core of embracing my ugly reality. Dystonia was changing my life, clipping my wings when all I wanted was to be playing on the trails. There was no denying its progression. I was not willing to wait, to sacrifice my range of motion or spinal health. I refuse to give away my days to dystonia. The risk of inaction meant I could lose my mountain life – my place of peace and vastness, of cowbells and marmots.
Embracing ugly reality, not hiding within performative watching, has made me a proud DBS cyborg. And it put me back on the trails where I belong. Stinky, sweaty and filthy, with a hint of cow detectable.