You cannot pretend
I wear a homemade black and white bead bracelet, in Massai culture the black beads symbolise struggle, the white beads purity.
Almost a quarter of a century of caring have taught me that you can’t pretend, your motives have to be true, your values strong - to survive, to speak the truth with integrity and power, to grow in relationship and being.
The struggle meanwhile is mostly hidden. Very few know, even less care.
My wife is profoundly physically ill, her agonising life is lived unseen, out of sight, out of mind. She described it once as “below Maslow” :
“People live in the world.
I, however, live life below the starting point for access.
There is no word for this space.
I call it 'below Maslow'.
Where hopes and dreams are just that.
They never come to fruition.
They are shrouded in impossibility.
Every lost moment takes me further from the world.
Every holiday missed, every visit denied, every activity put on hold,
Every hope of interaction, feeling, connection, stunted and then ripped away
By torment and torturing symptoms....
What is the word beyond torture?
What is the word beyond torment?
What is the word beyond unbearable?
What is the word beyond indescribable?
And who in the ordinary world, going about their daily busy lives,
finds us more than an inconvenience and a disappointment?
Who can ever understand the broken places I exist in
Harmed by people, harmed by virtually everything.
Who really gives a fig?
They would have to give up too much”
If my wife, in great suffering, exists in a pit, her multiple chemical sensitivity (MCS), her hyper noise sensitivity, her light, touch, sound and movement sensitivities combine to make it as deep as the seventh circle of Hell; which I expressed recently in a song :
I was just sitting with my wife in the garden, it is a beautiful day, the joy of blossom and the first roses. A risky endeavour with MCS and profound Hypersensitivities. Suddenly a loud metallic banging from somewhere. Now she lies paralysed, her whole day ruined, the impact of that clanging banging will last for hours; all her other hypersensitivities are heightened now, to nightmare proportions.
How can I describe the loss to you ? I feel it above all in my heart.
The garden, so beautiful, is a place of humongous risk - the neighbour’s washing, foul with fabric-conditioner, renders it toxic, as does the lingering smell of perfume, the daily crunch of gravel is enough to make you scream in pain, a friendly hand, reaching over the garden gate, to stroke the dog, is a disaster, if it is soaked in aftershave.
So your isolation becomes more and more acute; the world too toxic and alien to safely exist in.
The care too, becomes separated from the ordinary in their effort to be with the person and protect them from harm.
Yesterday I missed another important family gathering. Apart from the impossibility of leaving someone so ill, so profoundly disabled that it is beyond imagining, for hours on end to get there and back, there is the risk of infection, the simple cold becomes a danger in these circumstances, to both of us and the harmful impact of entering into the “normal world”, where folk use polish, washing powder, perfumes and deodorants: returning home covered in the stuff, the car stinking for ages, is simply not a safe option.
So today is a beautiful day, yet it has turned into a bad day, extreme irritation, hypersensitivity, torment, frustration.
That is the struggle. But there are also the white beads.
How can you talk about purity on a day like this? How can you see any growth when you are completely immersed in a pain-filled tormented world, completely separated from the beauty and peace all around you? Maybe all you can hope to do is survive.
Maybe you cannot talk about growth on such a day, but one thing we have learned is that in the deepest most difficult places, that is where you encounter truth, that it is precisely here, you find the way.
Seeking peace, healing, wholeness, wisdom in the stillness, the miracle is that we will get through this day.