Christmas Darkness and Light

IMG_4699What 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. 


18 thoughts on “Christmas Darkness and Light

  1. Oh Naomi, that is beautifully written. I’m so glad you have regained some health, however limited. You are amazing. I wish you happiness and joy this Christmas and best of luck with your writing. Eimear

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  2. Naomi, thank you for writing this, you have expressed what I’ve felt but never been able to put it in writing. This lets people without illness begin to understand what it can be like. I hope you are well enough to enjoy Christmas in the best way for you and that the harder parts are better than previous years.

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  3. Beautifully written. Our hearts long to see an end to the daily suffering, loss, unremitting pain, and unbearable loneliness which you and all those with ME/CFS endure every moment of every day. Much love to all of you and peace from our Lord, Jesus Christ.

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  4. Thank you so much for putting in writing my exact feelings, Naomi. You’re an amazing writer, with such a unique ability to express so many difficult emotions, shared by so many of us. This year has been especially difficult for me because I lost my mother a few months ago. I’ve been bedridden for a couple of years, but still somehow, my health manages to keep on getting worse & worse. I can’t wait for the next year already. It’s been hard.
    I am so glad to hear that you have gotten better. You brought me hope.
    Love,
    Patricia

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    1. I’m so sorry to hear of the loss of your mother on top of everything else. This must have been a painful Christmas indeed. I’m glad if my writing helped you in some way. I really hope that the year ahead is a better one.

      All the best.

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  5. Thanks Naomi. This Christmas was my most challenging to date right from the time I started to order the presents, to when my daughter put up our Christmas, through to being delivered our sausagemeat stuffing from my sister in law to giving giving my daughter the recipe for the chestnut stuffing. I had hoped to do these but energy esacaped me yet again. So, even I was taken by surprise when I couldn’t even manage to get out of bed on Christmas Day, due to the most horrendous migraine. I slept in darkness all day. Boxing Day I had improved a little but remained in bed and had the family visit me a few at a time, but even that was too much. I slept until 1pm today and when I did get up, I couldn’t speak until night time came.

    I feel very sad atm, not just because I missed Christmas, but because it carried on for everyone else despite my sickness. Don’t get me wrong, Im extremely glad for them, but I feel as I ve lost something else this Christmas. Not quite able to define it yet. I’m sure I will once my brain picks up speed again. But I definitely feel more sad with a sense of loss. Another neuron has died I expect!

    Thanks for writing your piece and giving me the opportunity to express my feelings here

    Take care, and Haply New Year to you.

    Much love,

    Fiona.

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    1. It’s very hard to be reminded that time doesn’t wait for us. The world carries on even while we are suspended in suffering. I’m sorry it’s been so tough for you.
      Wishing you a better year ahead x

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  6. Naomi, your response to Fiona was perfect. I have a son with ME/CFS and he was unable to travel this Christmas to our house. You’re right, time goes on, whether he comes or not, but it definitely isn’t the same. We are going to see him next weekend, and we will be able to visit him twice, for 20 minutes at a time. Very limited, like everyone else. It’s worth it for us, but I pray he doesn’t suffer too much afterwards. You are a very gifted writer, and so is my son. Maybe someday he will be able to write again. Thank you for your beautiful article.

    Sandi

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  7. Thank you for your courage to create this blog.
    I have been suffering with this fo 6 years.
    Please stay strong as you can.
    Many best wishes to you.

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