Guest blogs

Am I going crazy?

This is the transcript of a talk - Am I going crazy? -  given by bereaved parent and former Chair of Trustees of TCF, Dr Margaret Brearley at a retreat weekend for bereaved parents held at Woodbrooke, Birmingham in 2019. 

All loss is traumatic. But to lose a son or daughter is the most devastating loss – and profoundly traumatic, especially if sudden or violent or complicated. Self-inflicted deaths, or deaths inflicted by addiction or substance use, bring additional trauma to parents and other surviving family members.

When our son Joshua died, suddenly and out of the blue, I felt as though I was going crazy, mad with grief. I often felt like driving into a wall or leaping in front of a tube train – even now I stand well back from the platform, in case of a sudden mad impulse. For many months my mind continually ‘searched’ for Joshua , thinking that I spotted him in the distance. For years I constantly had flashbacks of when I found Joshua dead in bed, the Sunday before Christmas 2002.

When my younger sister, Caroline, died of quick inoperable cancer less than a year later, my mother did go temporarily mad with grief, inconsolable and refusing to speak to two of her three remaining daughters for over a year.

As I got to know more and more newly bereaved parents both within TCF and outside, I noticed that apparently odd behaviour is normal among us. Several of my new friends would go out in their cars to scream. Two bereaved mothers could not leave their homes for over a year. Another could not remain in her home in daylight for a year and a half, due to her extreme restlessness.

Because I have many friends who were Holocaust survivors, I knew that seemingly crazy, peculiar behaviour can be a reaction to extreme trauma. I knew an elderly survivor from Germany who shook and broke into a run whenever he saw a cross; others always carried bread with them, because of past starvation. One friend, an Auschwitz survivor, wore the most powerful aftershave and perfume, to dull the memory of the death camp’s stench.

All bereaved parents and siblings are to a greater or lesser degree traumatised. This is why Anna Bonham-Carter, mother of our Joshua’s friend Sebastian, who died eighteen months before Joshua, had rushed to befriend us as soon as she heard of Joshua’s death. She had learnt, she explained, that ‘one must run towards bereaved parents’, to comfort and support them in the intensity of their immediate grief and shock'.

For our anguish as newly bereaved parents is heart-rending, immense and complex. The death itself of our son or daughter is traumatic – but so, too, is the inquest. Traumatic, too, is our anger if our child was let down by CAMHS or their GP or psychiatrists or others, including their friends.

Bereaved parents suffer multiple trauma. Our loss is catastrophic. Our world has changed overnight. Many experience isolation due to the loss of family and friends, who simply cannot understand how shattering is the blow and how massive are our shock and grief. Many of us experience the loss of financial security if one or both parents cannot work for a time, and sometimes also the loss of a close relationship with partner or spouse. It can feel like multiple amputation, with so much rupture.

Other aspects of one’s child’s death can also be traumatic; coping with funeral expenses or one’s child’s digital legacy; the inability of others to comprehend our grief and their sometimes foolish comments; the loss of psychic security – everything now seems deeply unstable after the unthinkable has actually occurred.

Waves of grief can come, utterly unexpectedly, and times which we formerly approached with keen anticipation – school holidays, anniversaries, birthdays, Fathers’ Day, Mothers’ Day, Christmas - can now fill one with dread. If one has experienced previous trauma or the deaths of close family or dear friends, the new catastrophe can redouble one’s sense of loss and deep distress. The poet Elizabeth Jennings, has written: “Grief can return without warning...

...Time does not heal,

It makes a half-stitched scar

That can be broken and again you feel

Grief as total as in its first hour’.

Emotions can be extremely strong and hard to cope with – anger, remorse, a sense of often totally unjustified guilt – all assail bereaved parents. And however capable one was before the death, some things can seem almost impossible to cope with because of their emotional content – especially dealing with one’s child’s belongings, room, clothes or ashes.

Some years ago I read a fascinating book – Aftermath: Violence and the Remaking of the Self. It was by Susan Brison, an American philosopher who, after she had survived being severely beaten, raped, strangled to near death and hospitalised for many months, found that long after the attack she still suffered from flashbacks, shaking, panic attacks, and other forms of irrational and compulsive behaviour. As a result, she decided to research the impact of sudden trauma on other survivors of violent assault and the PTSD associated with it. Reading this book was what made me realise that we parents, who are suddenly or traumatically bereaved, are also assaulted by massive PTSD – and that the symptoms which hit us and can linger for years are not simply the effects of massive grief but are actually the result of post-traumatic stress disorder.

PTSD is actually our mind and our body trying to regain a sense of order after intense shock and distress by processing elements of the catastrophe over and over again.

Here are the three core symptoms of PTSD after trauma as outlined by David Alexander and Susan Klein in their 2013 book Grief, Loss and Bereavement:

• Re-experiencing the trauma (through intrusive memories, flashbacks and nightmares).
• Avoiding reminders of the traumatic event – including the scene of the event and people associated with it.
• Hyper-arousal – extreme nerviness and being ‘on edge’: irritability, sleep loss, being easily startled by sounds. Also hyper-vigilance – survivors have an exaggerated sense of risk.

There are other common symptoms of PTSD which seem deeply abnormal but which are in fact normal reactions to profound trauma. They include:

• flashbacks – ‘seeing’ again and again one’s child’s body or the scene of their death
• memory loss- ‘post-fatal’ amnesia can be worse and longer-lasting than post-natal amnesia.
• repetitive actions, such as constant sighing, clutching one’s chest, rubbing one’s arm
• feelings of intense loneliness, even when surrounded by others
• feelings of being disconnected from everyone and everything, of being somehow alien and detached
• feeling that everything is unreal; even that the death of the loved one is unreal
• feeling that life is empty and meaningless
• wanting to die
• thinking that one is going mad
• numbness – the inability to feel or to cry – or crying uncontrollably
• despair
• feeling shocked, dazed, stunned or emotionally dead
• swift uncontrollable changes of mood – sudden laughter or weeping
• dread on waking or on encountering new situations or entering new places
• experiencing agoraphobia (fear of going outside) or extreme restlessness
• finding it hard to care about or trust other people
• insomnia – or the constant need to sleep
• real physical pain in the heart or stomach – feeling that ‘my heart is seared in two’ can be physically real

A definite symptom is absent-mindedness: here is a poem by Gina Claye in her book Don't Let Them Tell You How To Grieve:

Forgetting

No, my mind isn’t on the job in hand,

I freely admit it and

Frequently I find myself, well,

Not where I should be at all.

 

I’ve just not been sleeping

So I set off to get a prescription

But instead of going to the doctors

The car went to Tescos.

 

So I bought the milk I forgot yesterday.

 

I thought I’d sorted out probate

But there’s yet more legal stuff to cope with.

Well, forget the solicitors,

The car went to Tescos.

 

Wish I hadn’t forgotten my mobile.

 

Tomorrow it’s the dentist.

I’ve been putting it off since last August.

I know I’ll be shaking with fright

But with any luck and despite

My very best intentions

The car will end up in Tescos.

 

David Alexander and Susan Klein believe that PTSD symptoms can interfere with grieving:

• through constantly re-experiencing traumatic images and memories of the death scene
• by becoming totally preoccupied with certain aspects of the death e.g. one’s real or imagined contribution to the death
• by constantly avoiding reminders of the death or of the one who has died
• post-traumatic numbness ‘may cause the bereaved to become distanced from individuals and circumstances that can be supportive and facilitate grieving’.

Be reassured: If your today is marked by symptoms of PTSD, there will indeed be a different tomorrow when you will be free of them. PTSD often does not lessen if people are isolated. However, research has shown that both intense grief and acute PTSD symptoms do gradually disappear if one is part of a community, such as TCF, in which one can share one’s loss and suffering. This is generally true of Holocaust survivors, torture survivors and survivors of other tragedies. It is equally true of bereaved people when they can share and talk about their grief – with a counsellor or with other bereaved parents – ideally the sooner the better. Recent trauma research at Oxford has shown, for example, that staying up as late as possible and talking on the night of a tragedy helps lessen its impact. By and large, the sooner one can begin to talk about the trauma and to share one’s anguish, the better.

Now - what can help us to overcome PTSD? There is no magic bullet, but some things can definitely help:

Confronting PTSD head-on – not being afraid of symptoms such as flash-backs, but recognising them and giving them new meanings. I eventually controlled my flashbacks on hearing ambulance sirens by training myself to be glad on hearing them, as they were rushing to help someone else in need.

A course of talking therapy, bereavement counselling or Cognitive Behavioural Therapy (CBT) can often help

Accompaniment: – a newly bereaved mother whose son had died in a traffic accident couldn’t stay in her house in daylight for well over eighteen months – so other friends and I endlessly took her out – window-shopping, walking, having coffee in cafes – anything to distract her from her overwhelming pain. It did indeed help and comfort. Then, she was like a walking ghost; now she is unrecognisably radiant.

Recognising the symptoms of PTSD as being the natural way in which one’s body or mind copes with unnatural levels of stress

Naming one’s fears; in fairy tales evil figures (Rumpelstiltskin) lose their power once they are named

Being listened to – Helen Bamber, who founded the first organisation to care for torture survivors, developed what she called ‘divine inquisitiveness’ – intent listening and gentle questioning which bring healing. Her biography is titled ‘The Good Listener’, because of her utter attentiveness.

Take heart, you dear friends. You will find that your symptoms of trauma – flashbacks or memory loss, numbness and despair and thinking you are going mad and wanting to die, feeling intensely lonely and that everything is unreal – these will gradually disappear.

Time really does help. Your anguish now is jagged, like a sharp flint in your body, piercing your heart, mind and soul. Gradually your grief will become like a smooth rounded pebble, always lodged within you but somehow bearable and comfortable.

Your profound bond of love with your son or daughter, so cruelly snatched away and for whom you yearn incessantly, will continue: gradually he or she will feel closer to you and even a part of you, as you carry their treasured memory with you.

Dennis Klass, who has studied the continuing bonds of parents with their dead sons or daughters, has written: ‘membership in a Compassionate Friends community means that the dead child is also a member of that community, that the child is valued, remembered, celebrated and loved...the children are the heart and soul of TCF’. To me the names of Zoe, Emily, Nicki and Robin, Fabian, Sebastian, Nicholas and so many others are precious because I have learned to love their bereaved parents who so loved them.

As one does things to honour one’s child and tries to live by their and one’s own best values, an inner conversation with them gradually develops and happy memories slowly begin to return.

Grief is hard work. It is exhausting. Grieving is deeply precious and vitally important.

Grieving allows us slowly to forget how our beloved son or daughter died and to remember who they were, and how they were, before the catastrophe of their mental anguish or addiction and eventual death.

Grieving allows us to recapture their precious love for us and to keep alive our profound love for them. That mutual love never dies. This is how the poet Elizabeth Barrett Browning expressed undying love:

‘How do I love thee? Let me count the ways.

I love thee to the depth and breadth and height

My soul can reach...I love thee with the breath,

Smiles, tears, of all my life! – and if God choose,

I shall but love thee better after death’.

 

Grieving allows us gradually to recall and honour our son’s or daughter’s unique, precious character and personality, so that their name will become a huge blessing to you and to others. All your life long you will be able to do good, creative things – some small, some larger, in your beloved child’s name. You maybe can’t envisage it yet, but it will happen - again and again.

You will find that in some extraordinary way, our broken hearts gradually become open hearts, able to empathise with the pain of others because we ourselves know the pain of grief. Here is a paradox. Just as ‘Nothing screams like silence’, ‘Nothing is so whole as a broken heart’.

Whenever negative thoughts come, remind yourself that you are a hero or heroine. You have shown courage in great adversity; you have struggled passionately to care for your beloved child through thick and thin, as no one else could.

Unexpected moments of joy will come. Just as your friends and family cannot imagine the depths of your pain and grief now, so too you cannot imagine that you will ever again be happy or joyful. But although we are permanently scarred by grief, I know that, as you are comforted by friends both within and outside TCF, you will find joy again. That joy will always be tinged with sorrow, but will eventually be radiant with hope.

But for now, I beg you, pamper yourselves and those closest to you – especially in the next few weeks. You may feel a bit low after the retreat here at Woodbrooke.

So be kind to yourselves. Remember that grief comes in waves, and that when a wave comes, you must eat. When you leave here, each day try to do something that will give you pleasure – see a good film or watch a comedy DVD, phone a friend for coffee or buy a new lipstick or tie or read a poem or walk in a wood or simply gaze at the sky and hear a tiny wren with its heroic, thrilling song. Try to cherish those friendships which remain to you. Romanies traditionally heal wounds using cobwebs wet with morning dew to bind them. Friendship is like the strong threads of spiders – it too has healing properties.

However awful you feel, try to strengthen yourselves and those around you with encouraging words and praise. Praise is like rain; it enables people to blossom and grow.

Although you are bereft, you are not alone. We in the Compassionate Friends are an extended family who belong to one another. And as you gradually open your heart to others, you will find that others will come to you, who need you.

A parent’s love beyond death is expressed in a quaint but lovely German-Jewish prayer of the nineteenth century, written for a woman to say by the grave of her son or daughter: ‘So, Almighty father, Let my child gaze down upon me as a radiant angel, so that his transfigured face is always in my mind. Let his voice warn me, if I am in danger of failing before you. let his eye beam upon me, whenever I have done something worthy; and let me be one day received by him, when you call me home into paradise’.

You can still express your love by being kind and loving to yourself, your spouse or partner, to any beloved surviving children.

The spirit of your son, daughter or sibling lives on in each word, gesture, deed of kindness which you perform inspired by their memory and your love for them.

In time, you in turn can reach out to comfort to other traumatised bereaved parents, perhaps through strengthening TCF -  by fundraising or by giving your time or your listening skills – but especially by finding other bereaved parents in your local community.

There is a traditional saying that ‘suffering shared by many is a partial comfort’. We in TCF can share one another’s suffering. We can indeed comfort one another. A broken heart never fully mends. But a broken heart can create miracles. Here is a Jewish story:

  ‘A messenger comes to the mourner’s house. “Come”, says the messenger, “you are needed”.

“I cannot come”, says the mourner, “my spirit is broken”.

“That is why you are needed”, says the messenger.’

A broken heart can achieve miracles of love. You wonderful, dear, heroic, broken-hearted, openhearted, warm-hearted parents and siblings – as you eventually reach out to others, and do things in memory of your beloved one, you will each achieve your own miracles of love.