The Box of Chocolates
11pm, my wife is slumped in unabbreviated agony, but there is extra pain tonight, her right wrist is burning up, a fly is tormenting her and everything I do is a profound irritation. The slightest mistake, like scratching my head, plunges her ever deeper into the terrible chasm, that is pulling her, inexorably, ever deeper into the molten centre of the earth.
Far below normal life and routine, we are buried deep, both of us. It is beyond reason or comprehension that it has been like this for well over two decades.
Looking back I think can distinguish three phases to our journey into suffering.
1. The age of hope and rainbows
You look for the meaning within, you seek to transcend the situation, through prayer, meditation, candles, mantras hoping, at least I did, that by seeking and finding a higher path that you will learn what you need to know about making choices, letting go, forgiveness, healing, and putting healthy boundaries in place.
Then there will be freedom, if you affirm it enough, to choose to move on free from fear, restored, renewed, whole again.
Those dreamy New Age books clutter my shelves. Much loved, no longer read, invaluable.
If you were to draw a population graph, I sense that most professionals, family and friends and those who try to help, have not left the magical age of hope and rainbows very far behind.
2. The age of activism
You get up and do something about the dire situation you are in. Those of us on the edge, trying to deal with the prejudice that surrounds having a poorly understood, medically neglected, incomprehensible disease, eventually learn that we have to speak up or nothing is going to change.
So I did. For many years I was extremely active and some kind of voice. But things move on and so do you. It becomes more and more impossible to even post on Facebook anymore, such is the immense stress you are both under. Your voice grows silent, even forgotten; that is what it is starting to feel like these days.
3. The age of silence
My wife describes this place :
"Time passes strangely here. It is slow, silent, flat, even empty often and yet at the same time, seemingly endless, but of course, this is an illusion. Pain makes the moment you are caught in, a terrible terrible place of unending agony. You know not how long it will torture you, nor how long you can bear it and yet bear it you must, on and on and on...You learn to live in its burning, throbbing, screaming grasp. You long for it to ease, to lessen, to cease to dominate your whole being. You beg for it to be taken from you. You pray it will not hurt you beyond your capability. "
My greatest achievement? I can sit on a bench for hours, silently and find contentment there. This is where my journey has brought me. To love. All that remains is love and the great silence. Our love is so immense, so huge, so powerful, it carries us through situations so bad, I am not sure you would know what I am talking about. Love has never failed us, love grows and keeps on growing, a wonder, a delight and a saviour.
Love is free, it reaches out. There are miracles aplenty.
Yesterday was very bad indeed, for my wife was struggling to cope for another second.
I was holding her, trying to cope myself, when the post plonked through the letter box.
A single parcel marked “Fragile”.
A beautifully wrapped and presented, dairy free, box of Bianca Marton Artisan Chocolates; oh like nothing you have tasted in your life, they are so delicious.
Out of the blue, an eye-wateringly expensive gift from someone obviously special, seeing the love between us, saying:
'Thanks for loving each other in dire circumstances and for working so hard to make the world a better place. With love from Sue K'
These chocolates are an unconditional gift that blesses us in the deepest way.
Can you begin to imagine what that means to us, here in the silence?
No words are possible to describe it.
(Published in the Autumn Edition of MCS Magazine )