Life with long-term illness is uncertain. The immediate present is unpredictable; the future unknown and often frightening. When living with a body that cannot be relied upon, it takes time to reach a place of fragile equilibrium.
For me, that hard-won balance has been tested over the past year. I’m not alone in being shaken, of course: the whole world has been unsettled by the coronavirus pandemic, including people in good health. But the fear and uncertainty are perhaps especially felt in lives that already rested on a foundation of instability.
The true challenge of the pandemic for me has not been the restrictions it has imposed, as to a large extent these were already part of my life. I’ve greatly missed being with family and friends, but in most other respects my daily life has changed little as a result of successive lockdowns. More difficult to cope with has been the extra weight of uncertainty added to a life that was already so delicately balanced.
My life of restriction and uncertainty is not nearing an end. The opening up of society will not represent liberation for me; instead it is a time to once again reassess what I can consider safe.
In the pre-covid world, I had a reasonable idea of what I could undertake each day without serious risk to my health. But over the past year I have repeatedly had to reassess what is safe and what carries too much risk. Last summer I wrestled with questions such as whether I could safely go for a walk in my wheelchair, or see my family. In the autumn I had to decide whether or not to hug my newborn niece. Simple activities that I waited many years to be well enough to enjoy, once again posing a new and uncertain threat to my wellbeing.
I cried last week when I heard the government’s plan for exiting lockdown over the coming months. My tears came not from a place of joy, but from knowing that my life of restriction and uncertainty is not nearing an end. The opening up of society will not represent liberation for me; instead it is a time to once again reassess what I can consider safe.
The world of pubs and cafes, foreign holidays and concert halls is far beyond my reach. But time spent with loved ones is something I treasured, and which I may yet have to avoid long after it is permitted again. I have no idea when my life will return even to the highly limited version of normality I knew before the pandemic. That uncertainty has felt crippling of late.
What I have craved these past few weeks is not the opening up of shops and beer gardens, but some degree of certainty and security.
Even the vaccination programme poses a difficult dilemma to those of us with ME and similar conditions. While the vaccines offer hope to humanity as a whole, on an individual level the situation is far more complex when a faulty immune system is involved. Both the virus and the vaccine have the potential to make me severely unwell, and as yet there little is data available for people with my condition on how best to mitigate the risk of either. It is one thing to choose between two clear options and weigh up outcomes of reasonable certainty; quite another when faced with huge unknowns on either side of the equation.
What I have craved these past few weeks is not the opening up of shops and beer gardens, but some degree of certainty and security. I have longed for someone to tell me what I can expect from the year ahead; to tell me which choices will be the right ones for me. The state of not knowing has weighed heavily indeed.
In the absence of a clear path forward, it can be hard to find space to breathe amid the turmoil. Anyone familiar with my writing will know that I often make references to nature. One reason for this is the constancy it affords in a turbulent world. The rising and setting of the sun; the phases of the moon; the emergence of spring flowers after the harshness of winter; the flowing of rivers and the rolling of waves against the shore. Even when I am unable to be fully present in nature, the certainty of its rhythms is an anchor in my fear and confusion.
When I remind myself that I am part of this natural world of unbroken life, I can pause and allow trust in myself to rise up. I have braved many storms before, and – when I have truly listened to my inner wisdom – have always found the right way through. In these days of fear and sadness, I have to trust that I will do so once again.
Image descriptions: Main image: A silhouetted woman sits on the ground. She is looking across a valley at the sun; Second image: An orange-tinted moon casts a path of light over a dark sea.