#MillionsMissing

Why are you so full of heaviness, O my soul,
and why are you so disquieted within me?

I’ve been recording stories of cycling for nearly ten years, but over that time my best friend and partner has been removed from the picture. It was my best friend that suggested we get bicycles. She researched our first circular ride around the Elan Valley in Wales. My best friend has cycle-toured with me, visited cafes with me, entered CycloSportives and Audaxes with me. My best friend and I have loaded our bicycles with camping gear, and headed out on adventures together. My best friend has even forgiven me for the ridiculously steep hills my poor route-planning has taken us over. My best friend used to be a cyclist. But now her bicycle hangs from the rafters of the garage. Unused.

My tears have been my bread day and night,
while all day long they say to me, ‘Where is now your God?’
Why are you so full of heaviness, O my soul,
and why are you so disquieted within me?

Unused bicycle

My best friend proof-reads these blogs and sees through my self-assurance and confidence. I make the journeys sound easier than they were and she looks at me, an exhausted dishevelled mess on the sofa and sees absurdity in the comparison. She’s aware that I curate these epic adventures and sometimes play down the boredom, frustration, anger, pain and/or suffering I experience.

My best friend is one of the #MillionsMissing.

My best friend has a disease which is not well understood. In Denmark she could have been taken away and locked up because the medical establishment insists people with her illness have a psychological disorder.

Why are you so full of heaviness, O my soul,
and why are you so disquieted within me?

Here in the UK, the disease my best friend has is labelled as Chronic Fatigue Syndrome (or CFS): ‘a persisting collection of symptoms exhibited as weakness that comes from mental or physical exertion’. However, I don’t see her fatigue coming from ‘mental or physical exertion’, rather it comes from the absence of renewal. Energy used isn’t replaced like it used to be. Weakness? My best friend is anything but weak!

As the deer longs for the water brooks,
so longs my soul for you, O God.
My soul is athirst for God, even for the living God;
when shall I come before the presence of God?
My tears have been my bread day and night,
while all day long they say to me, ‘Where is now your God?’

Other people label her suffering as ‘Myalgic Encephalomyelitis’ (or ME), which means muscle pain resulting from an inflammation of the brain or spinal cord. Except that ‘myalgic encephalomyelitis’ does not actually describe the observable facts. What inflammation? The ME Association prefer ‘Myalgic Encephalopathy’: muscle pain from brain malfunction. But this doesn’t help either; she is studying for a degree in theology, she preaches at church, she leads worship. She is capable of exertion but the impacts are felt for weeks afterwards. Her brain is pretty amazing.

My enemies speak evil about me,
asking when I shall die and my name perish.
If they come to see me, they utter empty words;
their heart gathers mischief;
when they go out, they tell it abroad…

Saying that a deadly thing has laid hold on me,
and that I will not rise again from where I lie.

My best friend isn’t well, and the medical world doesn’t understand, doesn’t fund, doesn’t research and doesn’t really believe her. In the UK the response is – try harder. Graded Exercise Therapy. What they haven’t seen is my best friend tries harder every single day. Often the result of trying harder is exhaustion for a week afterwards. From the outside it is difficult to tell that my best friend is unwell. She smiles, she goes to church, she walks the dog… and sometimes she goes missing. Along with the other #MillionsMissing: she hasn’t dropped off the planet though, she is recovering from the effects of emptying herself without being replenished.

My God, my God, why have you forsaken me?
Why are you so far from helping me, from the words of my groaning?
O my God, I cry by day, but you do not answer;
and by night, but find no rest.

My best friend sees me undertake exhausting endurance events, pushing myself to my limits and sometimes beyond. My best friend listens to me tell her how much fun I’m having and reacts with love – not jealousy or anger. My best friend responds to me with love and peace. With laughter and joy. My best friend supports me; simultaneously my biggest cheerleader and my gentle mocker. Where does she find this peace?

But it is you that took me out of the womb
and laid me safe upon my mother’s breast.
On you was I cast ever since I was born;
you are my God even from my mother’s womb.

Lament is the honest holding before God the tears of loss. Beating on the Lord’s chest with your fists and demanding an audience. Christians say, Emmanuel, ‘the Lord is with us’. Yet lament confronts God and, without irony, demands to understand the absence of God. My best friend does not deny her illness, and sometimes tears are her bread. My best friend sometimes pines for things lost, and sometimes rests in thankfulness. Thankfulness not for being ill, not claiming the illness is heaven-sent, but not denying that either. A thankfulness trusting that nothing is ever wasted.

She has said to me that being thankful is like light chinking into darkness, that the light is always there and sometimes breaks in forcefully. Light rending darkness. I imagine an overcast day of heavy clouds and then a single ray of sunshine stabs down onto the distant hills; suddenly the green of the field looks dramatic. Sometimes the light hits me in the midst of the wind and rain, sometimes in the middle of the storm there is a light shining. A light in a dark place. Lament invites us into this darkness but hope draws us through it. Hope doesn’t deny the storm, but invites calm. Hope is a pilgrimage and my best friend is a pilgrim.

O Lord, you have searched me out and known me;
you know my sitting down and my rising up;
you discern my thoughts from afar.
You mark out my journeys and my resting place
and are acquainted with all my ways.
For there is not a word on my tongue,
but you, O Lord, know it altogether.
You encompass me behind and before
and lay your hand upon me.
Such knowledge is too wonderful for me,
so high that I cannot attain it.
Where can I go then from your spirit?
Or where can I flee from your presence?
If I climb up to heaven, you are there;
if I make the grave my bed, you are there also.
If I take the wings of the morning
and dwell in the uttermost parts of the sea,
Even there your hand shall lead me,
your right hand hold me fast.
If I say, ‘Surely the darkness will cover me
and the light around me turn to night,’
Even darkness is no darkness with you;
the night is as clear as the day;
darkness and light to you are both alike.
For you yourself created my inmost parts;
you knit me together in my mother’s womb.
I thank you, for I am fearfully and wonderfully made;
marvellous are your works, my soul knows well.
My frame was not hidden from you,
when I was made in secret
and woven in the depths of the earth.
Your eyes beheld my form, as yet unfinished;
already in your book were all my members written,
As day by day they were fashioned
when as yet there was none of them.
How deep are your counsels to me, O God!
How great is the sum of them!
If I count them, they are more in number than the sand,
and at the end, I am still in your presence.

We are both grateful for the movie ‘Unrest’ which wasn’t afraid to confront the despair but shared the experience and offered hope and joy too. It was this movie which inspired me to write about our experience. God bless Jennifer Brea, her partner, and everyone who took part in the making of that film.

Missing Millions

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