Introduction and explanation
Sam first became obviously ill with headaches and blurred vision in 2009. He was living with us at home, having dropped out of university in June 2008 (see the post Background Noise for more details) As a 22 year old who was finding it impossible to make his own way in life, without at the time knowing why, life had been frustrating for all of us: he had landed back in my life when I was just getting used to my own space and it challenged me deeply. Becca had also been suffering with severe anxiety depression and having expert treatment for some years, so I was already carrying a lot of pain as a mother.
I started writing poems and reflective pieces in late 2009/early 2010. This creativity became part of my coping mechanism in all that followed. I shared my painful and questioning experiences by posting my writing on the Stories from the Street website under the protective pseudonym of Redhead… though to be honest most of my friends knew who it was!
I reproduce the relevant pieces of writing here as a mother’s diary – the original links to StfS sadly no longer work since the site became inactive. Initially they express the pain of any parent empathising with an adolescent’s struggles, followed by the tension of a long illness where we didn’t really know what was going on or when Sam might get better… because for 10 months we were told he would! On January 21st 2010 he finally went into hospital for a biopsy and on 29th we got the shocking result: the shadow in his brain is an inoperable cancer.
The pieces written in the weeks and months after that date reflect the physical challenge of radiotherapy and trying to adjust to the precarious balance on the knife-edge between uncertainty and hope, life and death, and our continuing journey through the grief and loss. As Christians, perhaps the struggle has been intensified as we have sought to make sense of suffering in the light of our faith. One piece I wrote for believers can be found here on our church’s website.
I developed this blog in September 2010. Though my posts vary quite widely in subject matter – as the blog is also an outlet for my erstwhile ‘ministry of encouragement’ Out of the Heart – many of the posts are about making sense of the pain while holding onto our faith, alongside the strain of living with the hopes and fears engendered by cancer treatment in the life of a young man. For example, Your own worst enemy, A shot across the bow, Those who do the carrying and Turbulence, are just a few items from the ‘Suffering’ and ‘Sam’s journey’ categories.
But the raw emotion of those early days has never been equalled – the flow of creative writing and words that exposed my heart has changed to a more measured and analytical current of ideas. As I said in Little Artist, I am grateful to Steve Lowton and his ‘Stories’ site for giving me an outlet and so much empathy from readers at that time, but also to Rebecca, our own ‘little artist’ at home, who first believed in and encouraged my creativity.
Here are the pieces – my creative coping – my diagnosis diary. You will need tissues… I make no apology for that, as these matters are widespread in our world and there has to be a time to weep. Indeed the poet Christopher Reid won the 2009 Costa Book of the Year prize for his moving writing about the death of his wife: perhaps it is true that such deep times bring out the most intense, beautiful and honest writing of which we are capable as human beings.
i) AN EXHAUSTING JOURNEY
Low water mark 17.1.10
I’m at my lowest ebb.
The tide-line of my life marks out a stagnant pool,
Surrounded by the silted mud.
Deposits of the past, in which I sink,
As waiting stillness marks time in my head,
And heart and soul are overwhelmed with pain.
I am a child again, alone and lost,
And all my life seems called to this same tune,
An all-pervading sense of foolishness
Which came from father’s ever-ready wrath.
It echoes down the years within my mind
Whenever I hit troubles of the heart,
“How stupid I have been, its all my fault!”
The shame of failure bringing self-reproach.
Until my daughter took it to herself,
With knife and blade upon her own left arm,
Punishing the lie with violence to self…
“How stupid I have been, its all my fault!”
This needs a cleansing flow of rising tide
To wash away the damage of the past,
To bring new hope to our scarred memory
And truth to wounds that have been caused by lies!
To know my value, all surrounding Love –
As I love her with all I have within –
My faults and fears swept away unseen
As water brings new life…
Tide rise again!
The Longest Night 19.1.10
Sometimes, time seems to stand still – or at least slow down to a snail’s pace. I hear the clock ticking and birds outside the window singing, surrounded by silent space while my heart is in turmoil within. “Lord, my son is sick”. I teeter on the verge of panic, where vertigo would drag me over the edge and into the chasm… ‘must keep looking up to the light, must keep my feet!’ I’ve got to hold it together because I am the lynch-pin, the carer, the one who makes things happen. So when I get to the end of myself – what then? Somehow in the hollow emptiness I keep going, of course! Somewhere I find the grace I need. At least I have until now… there are no guarantees for tomorrow. But so far, love has carried and compelled me, one day at a time.
There is a saying somewhere that ‘weeping may last for the night, but joy comes in the morning’. When will morning come? This started months ago and I can’t remember when I last felt carefree. The journey has been hard, hard, hard, like carrying heavy rocks up a hill: I stop and try to put them down, but they are lodged in my heart. Its a weary road… but isn’t it amazing what you can get used to, how you grow? After a while what was new and strange is old and familiar: that’s adaptation for you. So – further on and further in, going deeper still, stepping out the journey in the valley of the shadow. The challenge is to keep looking at the horizon and the first glimmers of dawn, where hope springs eternal.
I’m not an optimist. Fears in my head speak of the worst because I’ve been through the worst before. But fear is no way to live life and I have learned to choose hope and faith. I’ve also heard it said that ’courage is fear that has said its prayers’. So I will keep walking forward, even though the future is impossible to gauge. It’s grace for today I need – there is no grace for tomorrow.
And that’s how people cope with really terrible things, I suppose. There is so much suffering in the world; we look at others’ griefs and wonder how they manage – loved-ones lives cut short, the loss of a child, a long-term illness, poverty and deprivation, betrayal and loss, sudden accident or freak disasters claiming thousands of souls – ‘the slings and arrows of outrageous fortune… the heart-ache and the thousand natural shocks that flesh is heir to’ (Shakespeare knew a thing or two). I cannot carry another person’s load, though maybe I can help along the way; another person’s pain is not mine to feel, though empathy is always part of loving. But each of us will only find the grace to walk our own path, and somehow through that journey, and if we will allow it, become more whole. And so eventually we all arrive at the door of Hamlet’s ‘undiscovered country from whose bourne no traveller returns’, though exactly when we each arrive there remains veiled to the end. Life’s greatest mystery!
We cling to life as if that’s all there is. ‘I am immortal til He calls me home’ the faithful chant. Yet I have no rights: I don’t know what tomorrow brings. I cannot heal my son or make life happy again and I may have to face the worst in days to come. However, here’s my testimony, for what its worth, from one mother’s heart to yours: I am grateful for the birdsong and the boy and the blessings of my life, I do have hope that cannot die, and I can truly say this, there is always grace to walk the road, one day – or night – at a time.
In Your Honour 21.1.10
The night before the operation and I am eating a pizza at 2am – in your honour, really. Except that mine is mushroom, not pepperoni, and I’m dipping it in mayonnaise. You never would! As I lay in bed thinking about this pizza sitting in the freezer it dawned on me that this must be hunger speaking… because I haven’t eaten properly for the last three days. Funny to be having a midnight feast at my age, forty years after baked beans and pineapple rings by torchlight in the dorm. You would approve; you’d probably throw in a movie.
So I’m thinking of you in your hospital bed now. I hope you are asleep – that the headache is not too bad. I would be asleep too, far away from anxious thought, if your father hadn’t rolled into me just as I was drifting off and broken the spell. At the moment of passing into blissful ignorance the jolt of contact drives away the longed-for destination. I have been hovering on the threshold, cold and empty, since then. But you know how your father causes a ‘disturbance in the force’ at times, don’t you? Bless him, such a loving man, and so upset by all this happening so close to home. More than close… its in the very heart of our home and family, where you were born and will always belong.
You said some lovely things tonight, before we left. You have so many dreams and hopes for life ahead and what you’ll do when you get home. So thin and wobbly on your legs, you’re like a new-born calf with so much running to do – but first you have to learn to stand. These 20 years have been a struggle as you’ve battled inside your head and heart to come to terms with who you are. We certainly haven’t seen the best of you yet. Please God, let us not lose the opportunity to see you fly and leave your mark upon the earth. “The glory of God is a man fully alive” as an ancient saint once wisely said, and I know there is glory to be revealed through you. As Hannah in the Bible, all those years ago I pleaded with God for a son to make our family complete, and when you burst upon the scene we named you “God hears”. May He be listening and show us favour now! Because I believe in you, my son, and through these long hard months I’ve seen you grow through suffering and glimpsed a heart of love and deep integrity. Let it be seen now, man of principle, and do not be afraid any more.
So what will happen tomorrow? We decide not to fear the worst, but hope for the best – and carry on as well as we can in the meantime, sleeping, or eating pizza – in your honour.
Goodnight Samuel, sweet dreams.
Mouth to mouth resuscitation 28.1.10
I have been treading water far too long.
These treacherous torrents took me off my feet,
The swirling currents carried me away
To places I had no desire to go,
Tsunami-force of circumstance and pain,
The waves and breakers pushed me to the depths.
And fighting back, for days and weeks and months,
I rose again to take another breath,
To keep myself alive with hope and grace
And feel the sunshine warm upon my face.
But now it feels I’ve reached that final point,
The drowning person waving one more time,
His hand stretched out, continuing to hope,
Betrayed by weight and weariness at last.
The light fades out, the final breath expelled,
The waves and breakers pushed me to the depths,
To make my bed and lie on it below,
For there is nowhere deeper you can sink.
To rest in darkness, hidden from the light,
With bedrock underneath, I end the fight.
So now, if I am still to walk this world,
My only prayer is for Another’s Breath,
The kiss of life, the arms that lift me up,
A resurrection from the place of death.
This poem is also the basis of the post Waiting for the kiss of life
ii) RECEIVING THE BAD NEWS
Manoah’s wife 30.1.10
The words are spoken.
They don’t so much hang in the air as fall
As swift and devastating as a blade
Slicing my mind, piercing my heart,
Leaving me frozen
I know what they mean:
Pronunciation of a path of pain, a coming death,
Which is not mine, but yours, my son.
As you collapse beside me
My womb begins to bleed.
And I am simply Samson’s mother,
And all my life contracts to this,
A nameless woman with a calling
To help you walk the road before you,
To meet your destiny with peace.
Can there be strength found in such weakness?
For all your hair will go before too long…
Will there be honey found inside the carcass?
And can one family be of any value,
Stumbling blindly forward, wielding a jawbone,
Angry beyond belief, thirsty enough to die?
Give me a pillar to push!
I am but a nameless mother,
But I will leave my mark.
Manoah and his unnamed wife were Samson’s parents in the book of Judges chapter 13
The Horror 3.2.10
Last night the bubble burst and the horror hit me.
“There are no words” (that’s what they all say)
But only tears and cries from the deepest place,
Gut-wrenching sobs and groans,
My whole world crashing round my ears:
This is the sound of Rachel weeping for her children.
I wish it was me, not him.
I would trade places in an instant
And I would welcome death, run into it,
To reach the balm of heaven.
I don’t want to walk this path,
To see my son, with gritted teeth,
Submit to clinical excellence and side-effects,
To lose his hair
And later, perhaps, the ability to think, to move…
WE HAVE TO FACE THE WORST! Eyeball Death!
I refuse to pretend, to claim an escape clause,
Why should we be exempt while others around us
Drop like flies
With no hope or happy endings?
BUT GOD! There is a God of miracles!
Perhaps it could be you…
If we but knew the time and place
We could make a hole in the roof and lower you down.
Or maybe the miracle will be the grace to walk this path
Without the torment of hell, the mocking of demons…
No fear or despair, but angel companions,
Surrounded by friends and enveloped by love,
Glory in suffering, grateful for journeying,
Weeping tonight but there’s joy in the mourning…
For we are protected from the flames by the Son of Man,
Who also had a prognosis of three years…
While a sword pierced His mother’s soul.
iii) ENDURING TREATMENT
The man in black 21.2.10
One day when we were not expecting it, the man in black appeared on the horizon. We all stared at him, appalled – a portent of doom. He was far enough away that we couldn’t really make out his features… except for the glinting black eyes. Is he moving towards us or are we moving toward him? I would willingly eyeball that threatening gaze and stare him down, however he isn’t looking at me, but at my son.
The funny thing is, that man is on everyone’s horizon. He usually remains hidden, sometimes showing himself just before his trap is sprung, sometimes coming up from behind and devouring a life in an instant. He stalks battlefields and hospitals: his breath is feared. I know Someone stronger than he, who waits beyond, light to his darkness. When my time comes I will pass right through the shadow into Another’s arms, so there can be no dread of his cold embrace. Death has lost its sting.
But this is my son facing his own end. He is the one who must find the courage to keep walking, head held high, or seek some way round, or somehow squeeze past and delay the moment – as we all try to do. All I can do is walk alongside him, keeping watch, giving help and encouragement, a companion on the journey, however short or long the road may be. Its a sad and painful calling: as parents we look back down his road to the very beginning when he burst into the world on a May afternoon nearly 23 years ago. He was a laughing baby, a determined toddler, a grinning infant – always dissembling, always stubborn, always loveable. Years passed and hurts came, the personality thrusting through disappointments and setbacks, a character strengthened as well as scarred, lessons learned, friends made. But this latest hurt is incurable.
So the light of memories streams on our road like the descending sun, casting our long shadows at our feet. We walk in shade yet see the glory too, grateful for so many happy times past. The man in black cannot be ignored, but his presence somehow brings out life’s colours more vibrantly. Suddenly the language of the heart is top priority, love is spoken out loud and care expressed boldly where reticence kept us quiet before. We find our little family surrounded by a brotherhood far bigger than we knew, lifted and carried by many arms and many prayers, the wonderful comfort of fellowship in pain. In our newly constricted reality everything somehow falls into its right place and true meaning is found in the simple things. The need for peace and inner healing dominate and life is lived just one day at a time. Bright shades of nature’s beauty, sunlight, a friend on the phone, a bouquet delivered, a meal cooked, a message sent – all shine out with new radiance, bringing tears and unexpected joy. Close companions are closer, walking near us on the road we could not walk alone.
To look to the light that breaks out from behind this dark cloud brings deep gratitude, even joy, in the face of sadness. The contrast is stark, the pleasure more poignant because of our suffering. It is ‘joy unspeakable and full of glory’… And would we have known it if this had not happened? Would we have grasped how loved we are and how much we love? Would we have seen the heart of the matter and the meaning of life with such clarity?
Some days – and especially nights – its true, the sun is veiled and tears are our food. Many mornings there is weariness and pain as I rise to face another day, set my face to walk the path before me. But for love’s sake I will walk it, right to the end, whenever that may come. I know that to have seen the man ahead is a priviledge, an opportunity to focus on what matters most. Because faith, hope and love last forever, but the greatest of these is love.
I posted this piece here in the early days of the blog, because it sums up so much of our experience through this time…
The air in the car is so cold it hurts my face; the heater will take a while to warm it up. We sit huddled side by side, waiting. I drive through grey streets, past grey houses and grey people, in grey drizzle. Everything is grey – my heart is grey. We are in our own private worlds, in our own heads. No words are spoken while everything is focused on coping with the moment, the emotional demands of this journey, getting to the goal. There are no words of comfort – this is my reality now and he is battling with his.
So, the journey to the hospital, somehow endured, I drop him at the door. A few minutes now to find a space to park, to walk back in the freedom of my own company, to breathe, to draw on inner grace and maybe a friend who is thinking of us right now… to pray for success.
We have Marie Curie to thank for this. I believe she gave her life for it – literally. She discovered the properties of radium, didn’t she? How it can halt the growth of a tumour, stop the cancer cells dividing? In her case over-exposure gave her cancer and she died of it – radium is potent stuff! But it’s all they can offer so we take it, not a cure, thank you Madame Curie, but the hope of more time, as we tread the fine line between positive and negative effects. So there he lies, held in position in the X-ray machine for 15 minutes while they (oh so accurately) fire radiation into his brain. And I am praying the healthy tissues will not suffer collateral damage and that if at all possible (impossible) his hair follicles will not be burned away and useless ever after: God protect my son. Meanwhile, there is nothing to see, nothing to show for it… it’s really an act of faith. They will give a small amount each day over 30 days until the calculated number of ‘grays’ is reached. That’s a lot of silent journeys to the hospital and home again – definitely a full total of greys.
The receptionist is really nice; people like her make such a difference when you’re stressed and anxious. I try to hide in the corner of the waiting room, earphones and music blocking everyone else out, pretending this is normal life. I don’t have the capacity to engage with the suffering of strangers around me, the sick and frail lady who is around my own age, the boy in the wheelchair who has lost all his hair. His escort is loud and cheerful – I recognise a coping mechanism. How else can anyone survive in such a place?
Here he is, finished for today, and we can go. We return to the car much happier now that’s over for another day: he will talk to me now. I start thinking about how we will manage the trip tomorrow… oh yes, Dad will be driving then. I am relieved. As I pull out onto the main road snow starts to fall out of the white sky.
No Man’s Land 7.3.10
We’re stuck in the hinterland,
The twilight zone between light and dark,
Neither fully here nor there,
Walking on eggshells, broken glass,
Toward the wire, the finish line.
And no way back or out,
With every night upon a bed of nails,
The threat ahead each day, the promise glimpsed,
The undiscovered country out of sight.
The sun still shines here, birds sing, life goes on,
But always there’s a shadow in my mind
And sometimes, just like Frodo on Mount Doom,
I can see nothing but ‘the wheel of fire’
Alone in my own dark night of the soul.
So, carefully this road is walked,
On tiptoe, creeping, seeking for the way…
The grace so quickly lost, the pain floods in.
Sometimes there is a laugh, a hug,
But often cold rejection and retreat
And I cannot break through.
Where is the wisdom as a servant here?
Should I rip off the covering, revealing all,
The nakedness of agony, our broken hearts?
Or just pretend, ignore and carry on?
I carry on, I do my best… and it is not enough.
No way to speed this up
Nor can we sacrifice one second,
But for love’s sake keep walking, seeking peace,
And trusting we’ll be carried to the bitter end.
Lost at sea 21.3.10
It’s the first day of Spring. I am adrift in an open boat on the ocean of life. The winter storms took my rudder, sail and oars, so all I can do now is lie back against the weathered wood and look at the sky, allowing the pale sunlight to warm my skin. I have no choice but to let the currents take me where they will.
I was on a journey: I suppose I thought I knew where I was going, with some element of control. But the storms of life, which no-one can escape, came through in force and blew away my sense of direction. The journey has been radically interupted by circumstance – an intervention of Nature, the suddenly of God – and now my destination is unclear. I have no say in it anymore – if I ever really did – and now the wind and waves decide when I reach land and I have no idea when or where. Subject to the weather and unprotected I drift in my coracle, carried by the undertow of the deep, vast blue. My only provision comes from the heavens: thirsty I drink rain, hungry I remain.
It is quite strange, but there are other ships within my sight. Liners crowded with tourists pass in the distance, lights and laughter reaching me across the water. Other small boats make some headway under sail, white against the turquoise sea. Along the horizon trading vessels plough their course, merchants with purpose and cargo focussed on their goals. I even saw a pirate ship out there… Sometimes the passengers or crew spot me and wave as they pass by: how can they know I am in distress if I only cry out silently? I do not have the option of being rescued. I cannot join their journeys.
Today I revel in the season’s change and wonder if it signifies new hope: a change in climate, a touch of tranquility. Peace cannot come from circumstances, only from trust. Even in the dark when the huge waves rise and fall, the billows roll, the storms come up, the cold wind rips across the water and stings my face with its tears – when the terror strikes… All alone on the sea of life, battling with my fear, I am looking for the Man who walks on the water.
This story is also quoted in the post Autumn Equinox
iv) THE COST
The wait, the weight 17.4.10
Stain of sadness,
Loss that cannot be replaced,
Robbery’s sting and broken pride…
An enemy has done this!
On weakening will and heavy heart,
Malignant, threatening, rising tide,
The numbered, wasted days.
Without hope all is lost!
Where is redemption, love as strong as death?
I’m impotent as I watch the slide…
The wait, the weight.
Walking wounded 26.4.10
We’re walking wounded,
We’re staggering from a sudden, deathly blow,
Quite powerless to stem the draining flow.
You cannot see it
And from a distance you might think we look just fine;
Observe our journey,
We’re walking slowly… one-step-at-a-time.
My strength is failing
As rising weakness overwhelms my soul,
I wait in silence
For someone who will touch me, make me whole.
The tears of sadness,
The awful agony of what’s been lost,
The grief of mourning
As painfully we dare to count the cost.
A world of suffering,
So many others, all around us, wounded too!
We’re in a company,
All stumbling blindly forward, like we do.
A band of brothers
And of sisters, who have paid a heavy price
To shoulder, all unwillingly,
The fellowship of sufferings of the Christ.
The mother’s cry 6.5.10
I hold you in my arms again today,
It doesn’t happen very often now,
Your head upon my shoulder, nestling close,
The need for comfort overcoming pride.
I treasure you, my son, with all my strength,
Your face so near, like looking at my own –
Except that nose could only be a man’s,
Your father’s eyebrows too, I’ve always loved…
The years all fall away with that one glance,
I glimpse my little boy in my embrace,
The baby, then the toddler, fast asleep,
Cocooned in nurture and security.
I grew you, birthed you out of my own flesh,
And you became my heart walking about,
But as you’ve grown I’ve learnt to let you go,
The necessary severance of that cord…
The sword, the sword, to cut the cord,
To pierce my soul, to take the toll!
The price of love, the mother’s part,
To see you go and watch you fall!
also posted here with photographs
But all I want is love 13.7.10
It’s probably the best feeling in the world when your 20-something son says, “Hey Mum, have a hug! You are great! You are so kind and self-less – and beautiful! And you’re my mum!” It’s even sweeter when the young man in question has just been through radiotherapy for brain cancer. “Mum, thank you. You have made all this bearable.” Yes, those words mean something when they come out of a journey of hearts that have passed through fire… but perhaps that very journey is what has caused the words to be spoken at all.
I’ve been carrying him for so long. He’s far too heavy of course… I guess it’s what mothers do. But I have had to learn to put him down, let go, let him handle it his own way; I have had to develop emotional detachment, for both of our sakes. So now we seem to have reached an ‘entente cordial’, living our own lives and struggles in parallel. He has his freedom and as his little nuclear family we try our best to keep him happy. None of us know how long we’ve got – but he’s pretty well at the moment.
Its quite uncomfortable that now the focus has shifted round to what all this has done to me. The reactive depression has kicked in, with its accompanying negativity and loss of energy. It’s pretty tough to treat when you can’t remove the cause. My hope does go beyond all of this – the certainty of love and redemption in the end – but nevertheless, all the stress and uncertainty do take their physical and emotional toll. The sleepless nights are the worst.
The second worst is that awful feeling when I walk along the street, or even into a room full of acquaintances, that I have a huge (invisible) sign around my neck, “My son has cancer!” It’s like a leper’s bell… for those who are in the know can’t help but pity me. Its become part of my identity now, an inescapable shadow: I can’t be seen without it. How dark that shadow is depends upon the individual’s response – of fear, horror, curiosity, compassion or indifference. No-one knows what to say anyway and many just back away, as from the unclean leper. However, if some well-meaning person asks me once more, “How’s Sam?” I think I’ll scream! I’m just so weary of repeating the same sentences, while I keep my angry heart hidden safely away behind the fear of rejection… These poor friends are in a ‘lose-lose’ situation! But all I want is love.
And all those people who don’t know anything about it – they can’t win either. How can they not know?!! The inner rage cries out at ignorance and people just getting on with their own lives in the face of this tragedy that has ripped our world apart! But I stay mute, preserving them in their peace of mind, refusing to share my burden; they are given no chance to offer sympathy as I hide my pain away. This extrovert has introverted and I seek solitude now… But all I want is love.
Love knows me, cares for me, sees me in my sufferings, honours my bravery, holds me when I cry – is honest. Only a few friends have been willing to walk close enough to listen, to actually feel our pain and share our tears. Surely no-one would love enough to offer to change places if they could, would they?! That old ‘what if it was our family’ question must be in many people’s minds…
But anyway, thank God for the few, and for the strength we have found to keep going through all this. The fire has burnt away so much superficiality and revealed the gold beneath – maybe that’s why my son’s heartfelt words mean so much, so generously given, out of his own courageous journey in the face of death. So I respond in kind, “Sam, you’re great! You’re such a special person! You’re brave and clever and big-hearted – and unique! And you’re my son!”
Thank you for giving me love.