Wednesday, 27 February 2019

To my dear grieving parent ...six years on



Chloe Jane Drury
25/01/1995 - 28/02/2013

I saw a photo of myself the other day and I noticed how much older I looked.  I really didn't mind too much.  Instead of focussing on the lines creeping up around my eyes and forehead, I saw a largely contented middle-aged woman, who had stared down hell and come through in some way or other. A little tattered and torn, but still burning with love for those who matter so much. I saw a survivor and I liked that.

I also see my Mother's face in mine, more each day.  Don't we all?  And with that face I am filled with all of the love that she gave me. She feels so much part of who I am.  And slowly and surely I am allowing myself to absorb the wonder that was my youngest daughter - she too is filling me with who she was, what she would have been.  I have to live for her too now and finally accept her death.

There is always hope, isn't that what they say?

Today is such a sad day.  I never imagined for a moment I'd make it this far. How could I? How can a Mother live again after losing a child?  The truth is one can never live in the same way.

Chloe died six years ago today.  I've talked, written, cried, screamed so much about the injustice of it all and about what she was to me. What she meant to our small family. I love hearing her name, and sharing memories of what she was like...but I seem to have run out of words.  As a writer, words have been my craft, my sanctuary, a way of making some sense of something so nonsensical - but they don't work anymore.

But that's ok.

In their place I feel a longing to take Chloe back into the heart of my family.  I don't need grand gestures anymore, it's become much much more personal.  Is this that final stage of grieving - acceptance?  I think it might be.  At one point I would have kicked and screamed against this.  Acceptance seemed so disloyal to her.  I needed to hurt, to "bleed" every moment - "the pain of loss is equal to the power of the love".

Today the sadness is rooted in the very essence of who I am.  I can feel it as a physical hole, a physical pain in my heart.  But what I've learnt is that's ok and I don't need to medicate it or damp it down anymore.  I can sit with it now and embrace my tears as they make me feel closer to my daughter.  And that is what matters more than anything else.  I love the advice given by psychologist Dr Geoff Warburton in his TED talk about embracing grief www.youtube.com/watch?v=juET61B1P98.  In my long, and very full, journey with grief this advice has served me well.

So dear reader - and so many of you write to me and I read every single letter and reflect of your loss and grief too - I felt I wanted to share with you today.  My heart trembles a little more when I hear of another Mother, and another one ... about to walk this terrible path.  However old a parent is one should never have to shoulder the agony of losing one's child.  It really is not fair.   So my message, though rambling as it is, is stay steady just for today.  I cannot tell you it gets better, because it doesn't and you know that I would be lying if I said that.  But you will learn to live with it again.  Take tiny steps, don't look up, down, ahead, or behind - go gently and above all be so kind to yourself.  The sadness will change shape and you need to keep on going as you are the main guardian of your child's memory.  You have a magnificent purpose and job to do and I wish you all the love and strength in the world.

.... oh and I'd love for anybody to raise a glass for my daughter today and maybe a moment's thought.  That would mean the world to me.






.



Saturday, 9 February 2019

https://www.amazon.co.uk/Yet-Here-Am-Womans-Story/dp/1909109770

Deborah Binner has written more deeply about life after her precious daughter Chloe died.  Her book is called Yet Here I am and is available on Amazon and all good book shops.  It is hopefully an uplifting story of how a person can still find light and love in the bleakest of circumstances.

Monday, 8 January 2018

Finding meaning after the death of a child

I checked into my blog today, after a very long time, as a young friend reminded me that she still read it to keep in "contact" with our precious Chloe.  I noticed that there have been 94,632 hits on the blog from all around the world.   All these people giving me their time to hear about my grief.  I'm beyond touched.  I hope so much that all of you reading the outpourings of my heart, get some comfort too.  One of the worst possible things about grief, in my experience, has been the isolation and the loneliness.  That image of watching the world carrying on its business, whilst your heart and very reason for being has been so cruelly wrenched away.

Most especially I hope that I reach and connect with families who have suffered the tsunami of all losses - their hopes, their dreams, their child.  I so often turn to literature or the arts to soothe my broken soul.  The musician  Nick Cave,  a fellow bereaved parent, captures this loss so beautifully in his agonising song Distant Sky

They told us our gods would outlive us
They told us our dreams would outlive us
They told us our gods would outlive us
But they lied 

 I think often of young people.  Siblings and friends too who have lost such a key part of their own narratives out of the natural order of things.  An anachronism in the truest sense of the word.

I am writing a book, to be published this spring by the amazing Splendid Publications.  My publisher, and very dear friend Shoba Ware, is keeping me on track.  The book is about surviving, and exploring the possibility of trying to grow as a human being, after so much loss.   I lost my child, which was without question, the most painful of all.  Two years later I lost my much loved husband.  The backdrop of my life includes my Mother's death when I was 20 and I lost a sister to suicide.

So much loss.  Thankfully so unusual.

I write primarily for myself and for my family.  I want to make order of the sequence of events.  I want to place it into our  life story.  I want the next chapter to be about how one navigates life after loss, how one interweaves it into the future without it darkening and destroying everything that comes after.  I want my surviving child and grand children to look back and understand that despite anything/everything one can still choose to live and to live well.   I owe it to them to "walk the talk".

I respect and love my little family too much to not want to make the most of every single breath that I have left.  Giving up is/was never an option when you have other children.  In fact I don't think it should ever be an option, as each of us can if we want to live a worthwhile, although very different life to the one we had imagined. Granted, it can be so painful and may sometimes take a titanic effort just to get out of bed on the morning.

I feel so closely aligned to a tribe of women (excuse my focus on women but I feel so connected to other Mothers most of all) all over the world who have carried on, despite losing a child.  I feel so proud to know these people.  Some, I have only met online.  But we seem to know each other.  By speaking and connecting we break  down some of the barriers of isolation and find comfort. We share our vulnerability - so important for survival.  I think we grow and learn from each other too.  They are an incredibly important group of people and I love, admire and respect each and every one of them. 

Anybody who goes on living after losing a child is a hero in my book.

As a journalist, I am reading and researching extensively about life after death - that is after the death of loved ones.  I am having conversations with the most amazing people.  Trying to capture the wisdom and tenderness from those who are often up close and personal to grief and bereavement.

One of the people I admire most in the world is Julia Samuel, MBE, a psychotherapist and paediatric counsellor.  She was also a friend of Princess Diana's and has written the best book ever about grief and survival Grief Works.  I am so humbled that she has taken time to contribute to my book.  I just wanted to share a snippet of some of what she has said.  I asked her the question can anybody really find meaning and contentment after the death of a child.  Here is what she said:


"there is no exact answer to this, obviously, because following the death of your child your whole relationship to yourself, your life and everyone in your life is turned upside down - but what people do talk about, following a long process of grieving, is that they find a new normal, a new way of viewing life, it is different to their past, but sometimes with the level of the pain comes an expansion of the self and an increased capacity to feel enriched by life - and their perspective of what matters in life changes too, much more about love and connection than success or material things. This can give them new experiences of happiness. "

My conversations will continue and I will continue to share snippets.  If you are reading this as you are hurting, I send you all my love and hope that in some tiny way my words help you to feel less alone.  











Thursday, 3 March 2016

three years on...

First the good news, Time is some kind of healer; for me at least that is.  One thing I've learnt, above everything else, is that I can only speak for myself.  My experience of grief is unique; as is everybody else's.  But maybe there are some common themes; and just maybe sharing my thoughts will help somebody else.  Who knows really.  Sharing certainly helps me.

I get truly furious if people tell me how I feel; how to feel. I promise never to do this to you dear reader.  If you too have lost a child; I send you the hugest, deepest, most loving hug I have.  It's all I can give.  But I give it with all of my heart.

It is true time has some effect on softening the edges of pain; transforming the razor sharp agony into a duller, but pretty constant, ache.

So three years ago my youngest daughter, a light of my life, died. It wasn't a surprise; she'd been ill for three years.  Not that you'd know it.  There were dark dark times; but great ones too.  No she wasn't perfect, in fact very naughty at times, but she had this lovely light energy that allowed her to dance through life.  She made me happy; made others happy; was loved hugely and missed even more.

I can feel her with me sometimes.  The touch of her skin; her tufty hair (destroyed by chemotherapy), her beauty and her hands.  I always remember her hands.

I am surrounded by people who adored her and miss her almost as much as I do.  I say "almost"; as I'm of the mind that a Mother's love is the strongest of all.  My children, and now my grandchildren, are the only people I'd lie under a bus for.  Just nature; I guess.  But there's very little chance of anybody forgetting my Chloe.  She was one of those people it was great to be with - full of mischief and fun,  with an ability to fill every second.  I know that others are still in pain too; but I know I can't help too much with that as much as I want to.

Loosing a child is so utterly terrible, A tsunami of the soul; the emotional equivalent of going through a high speed head on collision; the kind of pain that stripped every single pleasure from life and  made me not want to live any more.

But I survived and have learnt to live a kind of life around the pain.  For a while I tried to pretend I'd moved on - just enjoyed the everyday life - but it wasn't true/it isn't true.  I have survived; but I'm emotionally disabled.  A layer of skin has been ripped away and what is left is very very different.

And here's the bad news/of maybe it's just the news from me.  The worst for me is trying to forget, to pretend that life will be normal again.  For the worst of all pains is in the pretending.  And every now and then I try to escape again.  On this anniversary I left the country, and with it some of the hurt.  No escape I'm afraid.  The darkness was there to great me; just where I'd left it.  Only this time it hit me hard and fast - whispering in its cold menacing tones .. you can't run away.  This is YOUR life, face it, embrace it, find it's centre.  Only then will you move with the flow again...

I had the most beautiful baby girl; I loved her with every fibre of my being. She grew to adolescence and everything was just as it should be.  But then she got ill and died.  I lived.  That's my story.

So next year, when her birthday and anniversary come round I will stay.  Stay here, where I should be.  Where my family is.  Where I belong.  I will sit with it and let it touch every single part of my body.  I will cry and will never say "oh I'm fine".   I will say "I'm not fine; I hurt like hell".  I may join that bereavement group I've avoided for so long, sit in a church, a park, anywhere and mourn my daughter every day if that's what I need to do.   Maybe I will never get better; I may go on to sit in the shadows of life forever knowing that there is no recovery from this.

But the good news, I think, is that all of this is ok and so much better than pretending.  I'm taking back my life and MY pain. And somehow there is a comfort in that.

Love to you all wherever you may be. xxx









Monday, 30 March 2015

Going in circles - two years on..



For in grief nothing "stays put." One keeps on emerging from a phase, but it always recurs. Round and round. Everything repeats. Am I going in circles, or dare I hope I am on a spiral?

But if a spiral, am I going up or down it?

How often -- will it be for always? -- how often will the vast emptiness astonish me like a complete novelty and make me say, "I never realized my loss till this moment"? The same leg is cut off time after time.” 
― C.S. LewisA Grief Observed



Today is a beautiful spring day.  Still crisp; but bathed in a hazy sunshine and topped by the brightest blue sky.  I love the sky.  Blue -  Chloe's favourite colour.

My pain sharpens, becomes more jagged, on days like today.  Daffodils spring to life; and my eyes rest on my young daughter's picture.  My young daughter who is dead.  So final.  So without any hope at all.  So unlike those daffodils - the symbol of spring.

 The sunshine  makes the enormity of the loss so much clearer.  It is the contrast; I think.

Chloe died two years, one month and two days ago.  It seems like yesterday; it seems like a lifetime ago.

"for in grief; nothing stays put".

And that's what I am learning.  One moves a little forward, one tastes a little hope, one almost feels fleeting moments of  - dare I say - "happiness".  But not for long; never for long.  The sadness creeps back.  A friend once wrote to me "grief is like being run over by a truck.  It then reverses and runs you over again and again".  

How very true.

But I don't write to depress.  I write to share.   Reading C.S. Lewis A Grief Observed is a beautiful experience.  The words speak to my battered soul and whisper "you are not alone".  Through them I feel a connection with another being who has survived.  Despite the most viscous of all losses; he walked, he talked, he lived.

And so do I; although is some kind of weird haziness of a life.  A life torn apart; a life missing a centre. " While there's life, there is hope." says Stephen Hawking.  And I know that he is right.  Despite having plunged the deepest depths of despair; I can still appreciate a sunny day.  If somebody had told me I would live after my child had died I would never have believed it.  

Does time heal? I'm really not sure.  Some things feel worse.  I find it impossible to look at baby photos of Chloe; to watch any video of her; to touch the huge piles of her clothes I have stored in many many boxes.  It just hurts way too much.  

I believe totally that one must feel the grief; sit with it; talk about it and roar in anger at the utter unfairness of fate.  And when that is done; do it all over again and again and again.  The real danger lies in packaging up the grief in a box, in a room, in a place and hiding away.  That is the road to nowhere. 

Maybe I will never look at those photos and that is only because my daughter mattered so very much to me. But I will keep trying to live; trying to love; trying to survive.   And I thank all of my precious friends and family who walk beside me with all of my heart.  









Wednesday, 5 November 2014

A handprint on my heart

It well may be
That we will never meet again
In this lifetime
So let me say before we part
So much of me
Is made of what I learned from you
You'll be with me
Like a handprint on my heart
And now whatever way our stories end
I know you have re-written mine
By being my friend...
Like a ship blown from its mooring
By a wind off the sea
Like a seed dropped by a skybird
In a distant wood
Who can say if I've been changed for the better?
But because I knew you

 Wicked - For Good Lyrics 



Such a poignant song for us.  The song one of Chloe's best friends, Olivia, sang at her funeral.  Olivia sings so beautifully/hauntingly.  And Chloe too.  One reason this song resonates in so many ways. The song tells of one friend who will go on to do amazing things; the other will be lost. 

 And that's how it is.

A memory springs up.  I'm crouching behind a bush at the singing teacher's house. "you aren't listening to me Mum!"   She was private, my girl.  A wonderful talent, but wanted to keep it private, even from me.  Still not sure why. They were special times sitting out there snatching a moment of her glory.  

"I'm limited",  such painful words that spear my already broken heart.  She was.  But only by cancer.

A song I heard a few weekends back with one of Chloe's best friends Sarah. We went to see Wicked. It was wonderful, painful, joyful, difficult - all those emotions all bursting out across the theatre.  Sarah is studying to be a children's onclogy nurse.  Wow.  I can't really write about Sarah without tearing up.  All I can say is that the NHS will be very very lucky to have her.

And as time pushes and shoves me away from my youngest child, I am indeed calmer.  I feel my life is building slowly and gently around the cavernous wound of loss.  Time heals; it is true.  But it only heals the intensity.  One just couldn't possibly survive at that level.  That, which is left, is quieter, gentler but, so sorry to admit, more deeply painful than anything else. 

 The finality of the loss sinks in.

"I'm limited".  I am and always will be.  But only by the death of my daughter.

Thoughts crowd my mind.  The song -  a momentary relief as I dive into the pain.   The words sharply reminding me that I too have not only lost a daughter; but a best friend too.

And now whatever way our stories end
I know you have re-written mine
By being my friend...

So many discoveries in the landscape of grief.   My daughters are my best friends, my life's work, my everything.  

Like a handprint on my heart

 I have most definitely been changed for the better because I knew you.  

  My daughter Chloe.  My best friend. 







Friday, 5 September 2014

Why I support Saatchi Bill and why maybe you should too....




saatchi bill, medical innovation bill

Professor Andy Hall from Newcastle University, Lord Maurice Saatchi and Debbie Binner   discussing the Medical Innovation Bill





Ah the arrogance of the well person (back to this in a minute).

I was there once too.  Blissfully sailing through life with three beautiful healthy daughters.  Great husband, great job, great life.

Apart from the usual childhood illnesses, never really gave our health a second thought.  None of our children, nor either of us, had spent a day in hospital ever - well almost never(  I  let the side down at 24 - fracturing my spine after falling from a horse. Major at the time: minor in hindsight)

Life changes fast.  Life changes in a moment.

This Sunday (7th September) at 7.40am Radio 4's Sunday Programme will debate the medical and legal ethics brought up by Lord Saatchi's Medical Innovation Bill.   Saatchibill.tumblr.com

www.bbc.co.uk/programmes/b006qnbd/broadcasts/upcoming


The Bill is designed to help medical doctors innovate new treatments and cures safely and responsibly when a terminally ill person has exhausted all standard treatments.  The programme asks "will it help patients"

I say it will.

The Bill was launched after Lord Saatchi lost his wife, the novelist Josephine Hart, to ovarian cancer.

"Insanity: doing the same thing over and over again and expecting different results".
For me Einstein's quote captures the essence of the Bill. 

The Bill is for families like mine.  Families destroyed by the bitterest of grief, as we've lost our youngest child to a system that refused to flex when we didn't want it to do the same thing again and again.  The research showed that the treatment wouldn't work.  It didn't.  No lesson learned there then. But at least we were all "nice and safe" as we stuck to the protocol and had all the clinical evidence we needed. .... you get where I'm coming from

Ewing's Sarcoma, a terrible adolescent bone cancer, killed my child.  That's true.  Just like leukaemia killed almost every child it touched in the 1970s.  Only after that people refused to do the same thing and pushed the boundaries.  Now almost 95% of children and young people survive leukaemia.

Ewing's Sarcoma killed my child; but the system didn't try hard enough to save her.

If only Chloe had had leukaemia.  My expectations have shifted somewhat you see.

Back to Saatchi.  I was interviewed today by a Radio 4 journalist for the programme.  Not an easy interview.  He was tough on me, which is unusual.  Usually even hard bitten hacks step around a bereaved Mother.  But not this time,he pushed me hard and I admired him for his professionalism.  I felt like a person again.

Why did I support Saatchi?  How can parents/patients really play a role in deciding treatment as they only ever have crude internet-based knowledge? Why do we need the Bill when doctors are already free to innovate? Would the Bill have made any difference to Chloe? Isn't the Bill useless really because doctors have a "God-like" self belief and if they don't want to innovate they won't and will just ignore the Bill (not my words)? Isn't the Bill just a waste of everybody's time? Was Chloe's consultant scared of being sued? Would I have sued the NHS?

Oh and -  to be fair this was said with some respect - aren't people like me and Lord Saatchi attention seekers who are stuck on campaigns like this as a way of exorcising our grief.

As a former broadcast journalist, I recognise a good interview.  This was a good interview and these were all valid and important questions. An interview that pushed and challenged and forced me to examine my own motives.  It made me think and dig deep into my soul to check with myself that I was doing/am doing the right thing.

Grief is utterly exhausting.  Supporting a campaign like this is too.  Trying to engage with an industry with a firmly "closed door policy" to any non-medics who want to challenge the status quo.  I've even had hate mail.  Quite amusing hate mail actually, and rather well written, but sad, I guess, that somebody would want to personally attack me.   I really would rather not be involved in this for many many reasons.

Some of the doctors and other health professionals I met with Chloe, top my list as among the best most decent people I've ever met.  But I stand firm in my belief that the NHS, despite its rhetoric,  does not take patient/public involvement nearly seriously enough.

I support the Bill because it is the right thing to do.  I support the Bill because I've seen at first hand the terrible messy world of childhood and teen cancer and witnessed time and again a kind of entrenched status quo.   "We can't do that as the evidence doesn't support it," our doctor would chime.

  Oh yes, dear consultant, in a perfect world we would have all the right evidence at the right time and yes I'd agree with you.  But when is that going to happen? Like, Never! Seeing as you work in a field where survival rates have improved very little; if at all, don't you think it's time to try something else?   Time to look at creative solutions, working together with industry, regulators, God forbid patients and parents!  Let's look at risk.  How do we share risk.  How do we make sure we provide a structure where we can push forward together and do something else.  How can we get better outcomes?


Can parents, like me, ever truly engage with any value in the complexity of medical discussions?  Maybe; maybe not.  What many of us can do is understand risk and the odds involved.  After all cancer patients work with this all the time with current treatments.  What I wanted was some control over my daughter's life.  I didn't want me or her to be dismissed and left on a conveyor belt which was speeding rapidly down the wrong path.  To the system she was another sick child; to me she was  everything.  Simply everything.

What would you do?  How would you feel?

My daughter was given a 25% chance of survival on current treatments when she was diagnosed.  We saw that as hope, so we were happy to try the treatment.  When first line treatment failed, the odds dwindled to 7% at best.  That wasn't good enough and we wanted to try something new; something else.

We couldn't get it.  There are treatments out there and combinations of treatments that had some clinical evidence to show that they could have made a difference.  But we couldn't reach them. I think that was wrong.

Was our consultant scared of being sued by us?  In truth I've no idea.  Do I think this Bill would have changed that - again I've no idea.  But I feel I would have been considerably more empowered as a patient representative if there was a clear structure to work from and I think that would have helped. I also felt that our doctors barriers were sky high from the beginning.

Would he have refused to work with me.  Again I've no idea. I'd like to think not and I'd like to think that he is/was a good man doing his absolute best.   But again I would have had a structure to take to him and maybe that would have helped all of us.

  For those lucky souls with no need of serious treatments for cancer or other illnesses, this may all sound like a pretty depressing subject.  Best avoided.  But we avoid this subject at our peril.  If you or one of your loved ones gets a rare cancer - or rare illness - or even the wrong kind of common cancer -you will have a big problem. If the pharma industry doesn't see you as a lucrative option, you are going to have to rely on your doctor being firmly on your side and maybe one day working with you to access one of those "imperfect"  untested treatments. It might be all that your left with.

I've met Lord Saatchi on many occasions.  He writes the odd letter to me too.  They are beautifully hand written, thoughtful, considered and kind.  I doubt we share many political views; but we are linked by having lost the love of our lives and battled a system that we felt could have been a hell of a lot better.  Friends/fellow bereaved parents are sometimes quizzical/suspicious as to why a "multi-millionaire" is bothering himself with all of this.  Maybe he, like me, is working through his grief.  Or maybe, like me, he feels a duty to do his bit to right something that he feels is so wrong.

Personally I find him a remarkable man.  The way he has poured his time, energy and passion into this piece of legislation.  I believe he's kept going despite his grief; not because of it.  And I thank him for that.

Please help to keep this debate going; whether you are for or against.  It's an important one.