Christmas can be an especially difficult time for those living with severe ME. This year, for the first time, I write of my experience as the loved one of someone severely affected by the illness.
I see him in the hushed beauty of a winter sky; in the gold-streaked clouds of an expectant dawn. I feel his presence in music and candlelight. He is never fully here, yet with me always. Unknown to much of the world, yet a constant in my heart.
The prison of his suffering is nearly impenetrable. I want my love to melt the darkness and agony, and to set him free. My helplessness stalks me every day of the year, but is particularly felt at this time of love and giving. The ache of missing; the emptiness of absence. And the sting of my own powerlessness.
I thought I knew all that could be known about suffering, through my own illness. Now I have learnt the unique torment of witnessing a loved one’s pain. My sadness could choke the sun with thick cloud; my anger rip holes in the sky. Music has no place here: I want to silence it with a scream. Candlelight is too forgiving when fire consumes me.
As I move through Advent, I know I am preparing for a day in which he cannot share. It can be hard to accept light into my world, when I know that none penetrates his. There is a difficult balance to find between allowing my life to continue (as far as it can), while acknowledging the essential part that is missing. The loss is not only mine: the whole world is poorer without him.
A person’s intrinsic value is not extinguished when their body fails. A loved one can be locked in extreme suffering, yet still be a source of comfort, of inspiration, and even joy.
Suffering forms the framework of his life; and, by proxy, mine. Absence and loss are the starting point of each moment. And yet there is so much more. I have discovered, many times over, that beyond the glitter and noise of the world known as the real one, we have something far deeper: love, and a strength of spirit that is often beyond comprehension.
A person’s intrinsic value is not extinguished when their body fails. A loved one can be locked in extreme suffering, yet still be a source of comfort, of inspiration, and even joy. I have discovered that when severe illness enforces absence, there is still presence: a presence both meaningful and profound.
This Christmas and always, in spite of an unimaginable bleakness of suffering, there remains one defiant truth. He is still my gift of light.
Further reflections on Christmas can be found in Christmas Darkness and Light, where I explore the meaning of Christmas when severely ill.
Find out more about severe ME here.
Image: Soroush Zargar on Unsplash