What is the meaning of Christmas when every moment of it is a struggle to exist? When the very foundations of celebration – food and company, music and light – are so physically destructive as to be impossible? When even the presence of loved ones is too much to bear? When the dreadful isolation of illness is greater than ever, because today, more than any day, the world seems to have forgotten your very existence?
During my worst years of ME I felt the weight of these questions like a crushing blow. I still cannot answer them, for there is no adequate response to such suffering; no words that can make it acceptable.
Over time I have regained enough health to be able to spend precious time with my family, for which I am grateful every day. In small doses I can once again enjoy celebrations. Many of us with severe ME have learned to create our own traditions that fit within our limitations. For some this will be as simple as listening to a favourite audiobook, or lighting a candle. Rituals, however basic, can be an important part of marking an event in a meaningful way and breaking the monotony of ordinary existence. Nonetheless, special occasions for me remain a delicate balancing act. My spirit craves colour and light, but my body demands darkness and silence in order to function. Reconciling these two fundamental needs is a challenge that exists all year round, but which is most keenly felt at times like this. Still, I am fortunate that some degree of balance is even possible.
My spirit craves colour and light, but my body demands darkness and silence in order to function. Reconciling these two fundamental needs is a challenge that exists all year round, but which is most keenly felt at times like this
What does Christmas mean when, for so many, it merely amplifies the pain of the rest of the year? When everything that would normally be listed as being of importance at Christmas – family and friends, special food, music – is completely out of reach?
A few years into my illness I was given a book that contained a re-written version of the Nativity story. In stark contrast to the usual cosy portrayal, it told the story as it really was: one that was full of suffering, fear and disappointment. (Giving birth in a stable as a teenager, far from home, isn’t all it’s cracked up to be.) A version of Christmas that started from a point of suffering, and from which hope emerged in the most bleak and unexpected of places, meant far more to me than the ubiquitous pressure to have a wonderful time. I realised that regardless of whether I viewed the story as one of religious significance, or simply as a tale reflecting human suffering and hope, there was a spiritual element that resonated with me.
Darkness and light are an intrinsic part of life. At Christmas I am especially aware of both the darkness of suffering and the light of the human spirit
Darkness and light are an intrinsic part of life. At Christmas I am especially aware of both the darkness of suffering and the light of the human spirit. For some of my closest friends, and for someone especially dear to me, Christmas will be yet another day spent in literal darkness, unable even to tolerate the presence of loved ones. There is no consolation for such pain and deprivation; no words that rationalise or relieve it. It is brutal, lonely and often unbearable. And yet the strength of those enduring it is something astonishing. They hold onto hope (often without even being able to define it as such) when there is almost nothing else. They fight on through the unendurable, with courage, humour and grace. Their spirit is the very essence of what it means to be human. Without even realising it, they bring light to the world.
My thoughts are with all those struggling this Christmas. You are not forgotten.
Further reflections on Christmas can be found in The Enduring Light of Love.
Find out more about severe ME here.