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The experience of my diagnosis with Parkinson’s and the pandemic are inextricably intertwined as they happened so close together. Both were a shock and because they were a shock, they have made me look at life afresh. I have heard so many people who have had life changing diagnoses report that in the midst of the challenge of the condition, aspects of their lives were transformed in positive ways because they were now so much more alive to the moment and awake to what matters. I recall some years ago setting a personal intention that I would do what is possible to undergo this sort of transformation without the diagnosis! And of course, we never know what will show up in our lives.

Predictably, the journey though these last months has been a personal growth accelerator and although I would love not to have Parkinson’s, in truth, I wouldn’t trade that for the perspectives it has birthed.

I was diagnosed January 2020. Retrospectively, I can trace that several low key, ongoing, body troubles were part of Parkinson’s. But simultaneously, I was active and, in many ways, very healthy. The spread of a trembling tremor in my leg up my whole left side whilst on a New Year holiday in the Cairngorms with friends was the tipping point that took me to the GP. I was concerned and did hold the possibility that this was potentially serious, but I deliberately didn’t give my mind the space to dwell on unknown possibilities. The referral to a neurologist and the diagnosis came jarringly and unexpectedly soon after. Looking back at the photos of that holiday in the Cairngorms, it is strange to see the ‘innocent’ version of myself in the snow on top of a Munro. Having a diagnostic label brings a whole different layer of meaning to experience.

February 2020 was an intense month. I was deeply touched and held by the loving support of family, colleagues and friends. My children came home so we could be together as a family the weekend after the diagnosis – they were of course processing the shock of this transition too. There were tears and long conversations, and it was a strangely joyous weekend with a lot of laughter and love. I thought long and hard and reflected with colleagues about whether it was appropriate to keep with my teaching engagements for that month. Given the proactive support and care I was surrounded with, I did go ahead and coteach a teacher training in France and a 3-day relational mindfulness residential in Germany – and appreciated the immersion in communities of practice during that turbulent time.

In March 2020, I had a longstanding plan to attend a month-long retreat, carefully scheduled to mark our family transition of my youngest turning 18, and the beginning of a new phase in my life.  Another lesson in holding plans and expectations lightly! I wavered about whether to go on the retreat at such a vulnerable time. I was feeling raw and naked, and felt the pull towards familiar comforts.  I shared my doubts with the retreat lead, Gregory Kramer, – and his response sliced through my doubts. The subject of the email back to me was ‘please come as you are’ – the visceral relief at hearing this invitation was tangible. A key thread of inquiry for me over these months has been – how can I truly ‘come as I am’ to the moment. In this I discover the well-rehearsed habit of subtly and sometimes not so subtly overriding how I am feeling in service of showing up for my work and my family. Of course, there are times when this is called for in the moment – but as an embedded habit it is clearly not sustainable nor healthy.  

The retreat was a powerfully steadying container within which to ride the roller coaster of stress, grief, sadness, and loss. I feel tremendously grateful for that period of practice which gave me a sustained period to digest. I had swathes of time to feel the tremoring in my body, and to explore ways to work with it. I experimented with multiple different ways of sitting – piling heavy cushions on my left leg and arm to see if I could weigh them down. In the end as Naomi Shihab Nye says – ‘it was only kindness that makes sense’ – holding my shakiness with loving sensitivity and care and allowing myself to feel the loss of stability and ground. Within this container, I could recognise how my symptoms were highly sensitive to energetic currents in my body, and I could begin to learn how to inhabit this new sensory field.

And then during this close in exploration with my phone handed in, the world moved into lockdown. It was very shocking to emerge into this surreal unprecedented pandemic reality. We hung out for as long as was possible before the final scramble to get home. Coming through the vast emptiness of the usual busyness of Schiphol airport gave me a sense that the apocalypse had happened – and I was one of the few members of the human race still out and about!

In a strange way, the conditions of the pandemic lockdown gave me some of what I needed at that time. It made it easy to stop travelling, to start exploring new ways of working, new life rhythms that took my new reality into account. In other ways, as for many, it was hugely challenging. There was so much pressing on us: the urgent need to step up to sustain our work amid the disruption; suddenly living back in a full household with several of us working online; the need to support our children in navigating their interrupted life plans; and the wider world concerns about the impact of the pandemic on vulnerable communities.

And through these months my tremor was a daily presence, my left foot had a strange pulsing twisting cramping life of its own; the muscles down my back and in random other places were perpetually moving into spasm; my sleep was disrupted and unpredictable; fatigue was a strong and at times overwhelming presence; I felt uncomfortably hot, then uncomfortably cold. The long hours of desk work and zoom teaching were deeply challenging and clearly unsustainable. I began to doubt that I would be able to continue in my work. This felt like loss upon loss.

The appointment when I was diagnosed was a case study in bad practice. I was told that as this is an inevitably degenerating condition, that there was no point attending to issues such as exercise and diet, and that it is advisable to hold of taking medication for as long as possible. The best thing I could do was to get on and enjoy my life as best I could and come back in a year’s time for a review. I look back now with sadness at the lack of supportive engagement I had in those early months to help me navigate and to look at options. All the personal research I did on Parkinson’s strongly contradicted what I was told in that first consultation. An online Parkinson’s exercise process that I joined became a deeply important daily anchor. I settled into a daily rhythm of guided exercises and discovered ways of exercising that evidence indicates could influence my neural circuitry. Feeling myself as part of a new community was also a significant step – I now belonged to this new tribe - people with Parkinson’s.

The health service was on its knees responding to the pandemic (though the reality was that many of the routine services for condi