Galactic Gulfs

This was a phrase I read in a Sydney paper to describe one man’s experience of describing his grief following the death of his wife.

Such an interpersonal gulf also applies to many of you as you re-enter your various worlds following the death of your child.

I would argue that is is probably true for families attempting to explain a cancer diagnosis and the treatment experience to their wider world.

In my conversations with palliative and bereaved families, one of the issues that surface frequently is how difficult it can sometimes be to adequately communicate what it is like to be a grieving parent to others.  This is equally true for surviving siblings.

Grief is, for many an overwhelmingly gut-wrenching experience at times…a bit like a being swamped by an emotional tsunami.  When as humans we experience such heartache, we need that heartache to be heard and understood…or at the very least tolerated for what it is.  What we don’t need is silence, irritation, discomfit or mindless platitudes.

Many of you will find yourselves in the position of trying to communicate to extended family or friends what it is like to be heartbroken and to be faced with the challenges of rebuilding our lives.

I was reminded of a piece sent to me a while ago from a mother who had had this type of experience and what she met was advice that she “not do this to her self”, that she should “get on with her life” and to “focus on the surviving children”.

Needless to say, this was not helpful at the time and only served to add to her already existing distress by making her feel even lonelier and more cut off from the rest of the world.  That sense of being ‘different’, of feeling disconnected from the ease of mutual understanding and communication is an experience that many can identify with.

In her distress, she spent time on the internet, exploring some grief websites and found the following lines which gave her comfort at that time.  She thought it might strike the right chord with others and so suggested that it be included.  I know many will resonate with the words.

  • Please don’t ask me if I am over it yet.
  • I will never get over it.
  • Please don’t tell me she (he) is in a better place.
  • She’s (he’s) not here with me.
  • Please don’t say she (he) isn’t suffering any more.
  • I haven’t come to terms with why she (he) had to suffer at all.
  • Please don’t tell me how you feel.
  • Unless you have lost a child the same way.
  • Please don’t ask me if I feel better.
  • Bereavement isn’t a condition that clears up.
  • Please don’t tell me at least you had her (him) for so many years.
  • What year would you like your loved one to die.
  • Please don’t tell me God never gives more than we can bear.
  • Please just say you are sorry.
  • Please just say you remember my loved one if you do.
  • Please mention my loved one’s name.
  • Please be patient with me when I am sad.
  • Please just let me cry.

Many of us could add many more to the list of do’s and don’ts.

These words, I think, illustrate three very important features of bereavement.

First, that it is not something that people recover from.

Grieving for someone we love ends when we too finally die.

It is a sorrow that is carried as part of oneself, a sorrow that underscores the fragility and preciousness of life and frequently influences in a myriad of ways, the way bereaved people continue into their tomorrows.

It is a process of becoming more familiar with a world that is profoundly changed and moving to a place where, hopefully, the heartache is carried more easily and in a way that permits enjoyment of life again.

Secondly, it describes the fact that while people die…our relationship with them does not.  Children who have died continue to be a part of you and to be part of your lives and remain, someone that you will want to talk about, whose story you will continue to want to share with others.

And thirdly, that communication with the broader social world in which you live can be very challenging at times (the galactic gulf), that language can be limited and that the receptivity and capacity to appropriately respond to another’s pain varies greatly.

Bridging the divide between the world that was and the world that will be, requires the bereaved to re-enter their social worlds – reconnecting with family and friends, developing new relationships perhaps, sometimes distancing or severing some social connections.

Supportive social networks are important to us all.  They are associated with positive mental health and a capacity to manage life crises.  Social support has been defined as feedback from others that one is loved and cared for, esteemed and valued and part of a network of satisfying communications.  Basically, we cope more effectively if we find the social support we need.

For bereaved parents, this will require amongst other things, being able to truthfully acknowledge thoughts and feelings , opportunities to have their changed selves acknowledged and accepted and the freedom to speak freely about ALL their children, both living and deceased.

The death of a child is an unusual event in the society in which we now live and communities are not always familiar with how to respond to the bereaved.

The culture of response tends still to lean towards notions of recovery and closure and a return to normal.  Nothing could be further from the truth, as is so beautifully expressed above.

Bridging the gulf may be difficult but necessary as you re-enter your social worlds, reweaving the web of your daily lives and reestablishing interdependent connections.  This can be comforting and reassuring as it may relieve the isolation of grief…but as observed in the poem, we cannot predict the responses of others and their responses are not within our control and can add to distress.

However, as humans,  we jointly weave our social webs.  By challenging or simply not accepting the platitudes or misguided utterances and providing cues as to “how it really is” we play a role in improving conversations and interactions about love and loss and life after.

blue and purple silk rose flower on pink surface
Photo by Marta Branco on Pexels.com

 

with thanks to Vera Russell Palliative Care/Bereavement Counsellor, a treasured colleague and friend.

 

Conceptualizing Progress in Grief

We often use the simile that grief is like a journey and while grief is a little bit like a journey, it’s not the perfect comparison.  The word ‘journey’ is not quite right because (1) I think it makes grief sound way more exciting than it is and (2) journeys are usually direct and typically have an endpoint.

Grieving is anything but direct and, contrary to what many people believe, it doesn’t follow a specific path or end after an arbitrary amount of time. Grief happens in fits and starts; it’s full of ups and downs, and it requires you to try and try again. Some days, when you’re well rested and confident, you feel as though you have a handle on things and you say to yourself…

“I can do this. I am capable and in control.” 

Other days, when you are weary and tired of the fight, you stumble backward, you stand still, or you manage to move just a few feet in the right direction.  When this happens you say to yourself…

“I’m lost. I don’t know how to find my way. I’m not making much progress. I feel broken. I’ll never be whole again.”

When something evolves as clumsily and slowly as grief, it can be really hard to visualize progress.  On a day-to-day basis you don’t feel any different, “better”, or “normal” and this perceived lack of improvement can feel very frustrating and defeating. But could it be that you aren’t giving yourself enough credit for the strides you’ve made?


How you measure up, depends on how you measure.

Something we often caution grieving people to be mindful of is their perspective.  It seems like such a small thing, but the way you conceptualize yourself, the world, and others in the context of life after a loss can have a big impact on how you feel.  This is true in many instances, but particularly when thinking about personal progress in grief. Why? Because when thinking about adjustment and progress in grief, people often make the mistake of comparing themselves to their “best” or “ideal selves”.


In this instance, your “best” or “ideal self” may be based on a number of things:

1. The person you were before the loss: Even though you might intellectually know you will never be the “same”, it’s hard not to think back and idealize the person you were before your loved one died and before you felt ravaged by the effects of grief.

In your mind’s eye, the person you were “before” may seem more whole, unbroken, radiant, happy, and fulfilled. This person is such a far cry from the one you’ve become since you stopped showering and wearing real clothes, and also since you allowed that bird to build a nest in your hair.  Okay so this is a complete exaggeration, but sometimes we (as people) are truly that unkind to our self-perception.

2. How you believe you should feel based on assumptions and expectations you hold: Before experiencing grief you likely had at least a few assumptions about (1) what grief looks and feels like and (2) your ability to handle emotional distress and hardship. But as we’ve heard many people say about the experience of grief: “Nothing prepares you for it”. 

Many people find themselves blindsided by how different grief is from what they expected. It would be great if everyone responded to this unanticipated reality by saying to themselves, “Grief is harder than I thought.” Sadly though, many people continue to put stock in their expectations and instead say to themselves, “What’s wrong with me? Why can’t I handle this? Why am I not coping better?”

3. How people literally say you should be: Sad but true, some people may judge the speed of your grieving.  Comments and expectations from others can cause you to question yourself and can make you feel confused, ashamed, embarrassed, alienated, and many other things.  Even though grieving at your own pace is okay, regardless of whether that pace is ‘head on’ or ‘slow and steady’, pressure from others can make you question the progress you’ve made.


Needless to say, comparing yourself to your “best” or “ideal self” works against you.

Looking towards a non-existent endpoint, or staying focused on a mythical future-you, keeps only what you haven’t accomplished in view.  It’s good to have realistic goals and hopes for the future, but be careful not to compare yourself to unrealistic ideals and ignore the many gains (I’m certain) you’ve made.12-e1473171171808-1024x553

Instead, if you truly want to gauge your progress, you should compare yourself to your start point (i.e. your worst) rather than your best. This is the only way to have a proper perspective on what you’ve accomplished and to accurately see how far you’ve come. Even on days when you feel completely lost in your grief, if you look back to the beginning you will likely see that you are doing better than you were (unless some overlapping or subsequent setback has gotten in the way).

Grief is something you learn to live with day by day. Every time you push yourself to do something like getting out of bed, face something you fear, sit with a painful emotion, engage in self-care, actively cope with your loss, honour your loved one…and the list goes on…you should say to yourself “good job”.  You should feel proud of yourself for every small step you make because healing from grief isn’t the result of smoothly navigating a journey. Healing from grief is what happens when you get up each day and decide to keep walking.

 

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Building a field of flowers…

Rather than focusing on right and wrong, try to think in terms of creating something new from a pollination of ideas. Consider each mind as a flower, which goes through its own cycles of growth, budding, bloom and decay.

Somewhere along the path, the cerebral flower of the mind comes into full bloom, and through dialogue with others, a wondrous process of cross-pollination with other mind-flowers can begin.

Before you know it, new flowers with new colours, patterns, and shapes begin to emerge everywhere; idea-flowers that have never existed before, not even in our wildest imagination.

beautiful environment field flora
Photo by Mina-Marie Michell on Pexels.com

This process exposes the genius of natural designs and laws which are far beyond our weak intellect’s comprehension. What is essential is that we come together as a community and communicate, and do so as respectfully as possible.

The change will emerge on its own and will carry the unique imprints of each participant forward into the mysterious creation of that which is beyond imagination — a new world.

Bryant McGill

 

How fear blocks creativity

 

When we feel safe, our creativity unfolds like a beautiful flower.
To understand how fear blocks creativity, take a moment to imagine yourself telling a story. First, imagine telling the story to someone you love and who loves you. You probably feel warmth and energy as you fill in the details of your tale to your friend’s delight. Now, imagine telling the same story to someone who, for whatever reason, makes you uncomfortable. The wonderful twists and turns, the fine points and colorful images that unfolded in your mind for your friend probably won’t present themselves. Instead of warmth, energy, and creativity, you will probably feel opposite sensations and a desire to close down. When we feel unsafe, whether we fear being judged, disliked, or misunderstood, our creative flow stops. Alternately, when we feel safe, our creativity unfolds like a beautiful flower, without conscious effort.

Knowing this, we can maximize our creative potential by creating the conditions that inspire our creativity. In order to really be in the flow, we need to feel safe and unrestricted. However, achieving this is not as simple as avoiding people who make us feel uncomfortable. Sometimes we can be alone in a room and still feel totally blocked. When this happens, we know we have come up against elements in our own psyches that are making us feel fearful. Perhaps we are afraid that in expressing ourselves we will discover something we don’t want to know, or unleash emotions or ideas that we don’t want to be responsible for. Or maybe we’re afraid we’ll fail to produce something worthy.

When you’re up against fear, internal or external, ritual can be a powerful–and creative–antidote. Before you sit down to be creative, try casting a circle of protection around yourself. Visualize yourself inside a ring of light, protective fire, or angels. Imagine that this protective energy emanates unconditional love for you and wants to hear, see, and feel everything you have to express. Take a moment to bathe in the warmth of this feeling and then fearlessly surrender yourself to the power that flows through you.

BY MADISYN TAYLOR

red and blue hot air balloon floating on air on body of water during night time
Photo by Bess Hamiti on Pexels.com

 

the heart of the matter

Shared at Su’s request, words to ponder. ❤  Andrew Codling

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Photo by Ylanite Koppens on Pexels.com

After spending some time with friends, I reflected upon the values that truly mean something.
” In the end, it is how generous you were with your heart, that matters.
One day, when all your earthly possessions have no use to you, you will reflect upon the life you led.
There are many paths to happiness, and the path you choose will be filled with distractions, like wealth, adoration, greed, envy, anger, the list is varied and long.
When you meet these distractions, do not feed too heartily from their plate, for they will never satisfy you, they will offer temporary relief to you, but you will be left hungry and wanting more.
You see, the distractions that truly fill you up, are not those that feed the mind, but are those that feed the soul, like love, compassion, kindness, humility and charity.
These are the attributes that you take with you on the great journey, and when the mirror of your soul reflects these back to you, you’ll feel pride in seeing these aspects of yourself reflected back to you.
It’s not wrong to submit to the material world, it’s necessary in order to survive, but it is right to find balance, and in doing so, we can feel truly fulfilled, and then we are better placed to serve not only others, but also ourselves, and with greater purpose.
To truly give of yourself, is to grow and nurture your own spirituality, and this we can do, irrespective of our means.
Because, in the end, it is how generous you were with your heart, that matters “

Finding grace, tact and empowerment

We have all had the experience where we have been annoyed, offended, hurt, saddened or angered by another. How can we handle the situation and ourselves so that we exercise, grace, tact, and possibly even advocate for change in the world?
Together, let’s explore some strategies which we can adopt to both heal our hearts and move forward in the best manner possible.
Judgment.
It is simply not necessary to introduce judgment into everything. To understand someone’s intention you’d have to fully understand them. How can we possibly know what is in the heart and mind of another? Many times, we and others act without forethought, without conscious intention. Sometimes, our emotions overtake us. A lot of the time, we barely even know ourselves! Broken people hurt other people. Can we really judge them for that?
If, for example, someone is ill, do we judge them for being ill? Do we hold their illness against them? No, of course not! It wasn’t that person’s choice to become ill.
By the same token, perhaps, that person we are so quick to judge hasn’t made a conscious decision to be where they are. Maybe, they themselves don’t even know how or why they ended up where they are. Can we blame people for not knowing what they don’t know?

Boundaries.
If you can’t handle yourself in the company of a person, then it is necessary for you to enact a boundary for the well-being of both yourself and that other person. If you can’t keep your emotions in check, it may be best to distance yourself until you have found some healing for yourself.
We want to spend time with people who motivate us to be our best selves, because we want to bring our best selves to the world.
We do not need to keep people who have harmed us in our lives. We can set boundaries. We can’t possibly have time and energy for all people anyway. We must, however, ensure that we make time for ourselves in our own lives, we must engage in self-care. Self-care is particularly important when we are hurting.
Vengeance.
We have all heard the saying that “Two wrongs don’t make a right.” and it is true: Hate breeds hate. Hate will not heal. It will not heal you, and it will not heal them.
If a person is broken, that person needs healing. They need your love more than they need your hate. Hate will not break a negative cycle, but love may make a difference. Even if you don’t know how to love a person, don’t treat them with hate. Treating them with hate chances them also losing the ability to love themselves.
People who don’t love themselves are often volatile and at risk of poor choices and behavior. Don’t make the problem worse. Don’t treat people the way they have treated you. Treat them the way you wish to be treated instead. Don’t become that which you hate.

Expectations.
Don’t give with expectation. Don’t help someone expecting them to return the favor. Don’t expect them to change. If you have helped leave it at that. Your intention was to help. Your intention is not the outcome.
You’ve done your part. More than that, you haven’t added to the problem. That’s quite something all in itself!
Compassion.
It is easy to love people who are easy to love. The real challenge is to love those who have hurt or harmed you. Love and compassion are not circumstantial. You don’t have to understand people in order to love them. You don’t even have to like them or agree with their actions.
Remember the human beneath. We do not know what may be tormenting a person’s soul.
You can love others with a compassionate heart. Never underestimate the power of kindness and compassion.
Forgiveness.
Don’t carry the darkness of hate in your heart. It will harm you. That anger will seep into every aspect of your life. It will taint everything.
Instead, work through your emotions. Find forgiveness and let go. Don’t hang on to things. Don’t bring the past into the present. When we bring the past with us, we diminish our presence in the moment.
Learn to let go. Forgiveness is for you, not them. Forgiveness does not mean you condone or agree with what someone has done. Don’t replay that which has hurt you over and over again. Don’t torment yourself further. You deserve peace.
Remember, you have the power to make a difference. Your very words and actions can effect change.

Don’t be a part of the problem, be a part of the solution instead.  Be defined by love in all you say and do.

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Photo by eberhard grossgasteiger on Pexels.com

Akiroq Brost – inspirational writer

 

A New Normal

When someone we love dearly dies, the world as it was has changed forever,  Effectively individuals and families have to re-learn and create a ‘new normal’.

The process is what we understand as grieving … To create a ‘new normal’ requires fully absorbing that the ‘old’ cannot be, experiencing whatever feelings and thoughts arise as a result and gradually becoming accustomed to a changed reality.

Grief is both a private, individual process and a social one in that it occurs within the context of family, community and the broader social world.

Initially, the rawness of grief is often responded to by others with care, sympathy and support.

This care and support for many starts to dwindle long before grieving individuals have found their feet in a world forever changed.   Grief increasingly becomes ‘invisible’ to others.

Many of the conversations I have with families focus on the difficulties experienced in communicating to others the depth of heartache and its impact on every aspect of life.

One mother once said to me that it might be easier to be a double amputee as there would be obvious physical evidence of a changed self and our changed relationship to the outside world.

Bereaved parents and bereaved siblings often look so normal on the outside.  They usually go back to routines of everyday life and appear to function quite well.

Words frequently are inadequate to express the impact of the death of a child.

Changes that emerge often take place over a more extended period of time and again can be challenging to explain to others.

The following captures so well the sometimes great distance between a private reality and its social perception…the gap between being and understood and communication as it sometimes can be between bereaved people and others.

Can you see the change in me?  It may not be so obvious to you.  I participate in family activities.  I attend family reunions.  I help plan holiday meals.  You tell me you’re glad to see that I don’t cry anymore.

But I do cry.  When everyone has gone – when it is safe – the tears fall.  I cry in privacy so my family won’t worry.  I cry until I am exhausted and can finally fall asleep.  I’m active at work.  I listen to my friends.  You tell me you admire my strength and my positive attitude.

But I’m not strong.  I feel that I have lost control, and I panic when I think about tomorrow …  next week … next month … next year.  I go about the routine of my day.  I complete tasks assigned to me.  I drink coffee and smile.  You tell me that you’re glad to see that I’m’over’ the death of my loved one.

But I am not over it.  IF I get over it, I will be the same as before my loved one died.   I will never be the same.  At times I think that I am beginning to heal, but the pain at losing someone I loved so much has left a permanent scar on my heart.   I visit my neighbours.  You tell me you’re glad to see I’m holding up so well.

But I am not holding up well.  Sometimes I want to lock the door and hide from the world.  I spend time with friends.  I appear calm and collected.  I smile when appropriate.  You tell me it’s good to see me back to my ‘old self.

But I will never be back to my ‘old’ self.

Death and grief have touched my life and like it or not I am changed forever.

lindsay-merlo

When a sibling dies

rear view of a boy sitting on grassland
It has been said that “death ends a life, it does not end a relationship.

This statement is perhaps especially true when a sibling dies in childhood, adolescence or early adulthood.  An untimely death whose ripple effects may continue long after the farewell at the funeral or graveside.

Sibling relationships have attributes in common with all interpersonal relationships.  They also have specific unique features that reflect a special bond.

It has been suggested that siblings are likely to spend more of their lifespans with each other than with any other family member.

Siblings may use each other as significant influences, ‘benchmarks’ in the development of self- identity and understanding of the world.  Siblings play a crucial role in the development of identity.  Their relationships help define one another.

Consequently when a sibling dies, the surviving child or adolescent loses many things…a playmate, a confidante, a role model, and a friend…even someone to argue with and someone with whom they can  ‘gang up’ against parents.

Perhaps someone to grow old with, look after aging parents together.  They lose a shared history and future, a feeling of connectedness and shared activities.

The identity of siblings is frequently so intricately connected with the death of a sibling it may feel like the death of a part of themselves.  The grief of young people may at times be minimised, overlooked or misinterpreted.

The familiar pattern of their lives as for adults is forever changed.  They may feel inexpressively lonely and lost.  They may also feel regret and guilt, as adults sometimes do, wishing they had done things differently.

Life views may be challenged, e.g. that only old people die, that adults can always make things better and keep everyone safe.  It can be very unsettling for young folk and they, like adults, need time and help to relearn their new world.

How each child or adolescent responds to the death of a sibling will be influenced by a range of factors, including their age, their gender, previous experience of loss, the reactions of adults around them, individual personality, the nature of the death and the nature of the relationship they experienced with the child who has died.

It is difficult, in the early months, to feel connected to someone who is no longer physically present.  There may be for older children and adolescents, an expressed fear of ‘forgetting’.  The permanence of a ‘heart connection’ seems less than a physical presence, a person that can be touched and loved, played with and kissed.  Children and adolescents, like adults, may like to surround themselves with photos or mementos to trigger and reinforce the strength of memories.

“Eventually and gradually, there is a growing knowledge that those who have died are, always have been, and always will be a part of who we are, that no-one can take from us what we carry within.” (Dianne McKissock)

In years past, it was thought that we need to ‘leave things/people behind’, and ‘get on with our lives’.  Nothing could be further from the natural inclinations of most bereaved people, for whom ‘leaving behind’ is a most painful concept.

Current understandings about grief and the task of readjusting to a world forever changed, place more emphasis on the natural human tendency to want to stay connected in some way, to take those who have died with us into our tomorrows, albeit in a different way.

It is now more widely accepted that maintaining an ongoing connection and relationship with the person who is died is often an integral part of a healthy and successful readjustment.

For years following the death, many siblings may report that they continue to actively miss their deceased brother or sister and often experience renewed and intense grief on occasions that would be considered significant in their lives together (e.g. graduation, births, weddings, retirement, special birthdays).  Surviving siblings continually renegotiate their ‘relationship’ with their deceased sibling as they navigate successive developmental and life stages.

The whole family is heartbroken and disrupted by the death of a child.  The family, as individuals and as a unit, must restructure and readjust.  How parents model managing their grief will influence how surviving children manage.

Open communication, a sense of togetherness and parental support is crucial as is the help received from extended family and friends.

The impact of a child’s death is pervasive.  As with adults, not all children and adolescents react in the same way.

Some points to consider:

  • Children are less likely to be able to describe their emotions and/or reactions.  They show their hurt in other ways, e.g. crying, withdrawing, seeking attention, misbehaving, complaining of aches and pains, picking fights, arguing, having nightmares.
  • Age and development significantly influence a young person’s ability to understand death.  Adults with all their life experience and complete development will frequently feel overwhelmed by the enormity and finality of death.  It, therefore, can become puzzling and confusing for children.
  • A sense of normalcy is lost.  Bereaved children may feel very different from their peers:  the family may feel different.
  • At times children may feel that the child who has died was the preferred or favourite child, mainly as they observe parents become preoccupied or all consumed by their grief.
  • Sometimes the child who dies is idealised, their admirable qualities emphasised and surviving siblings may feel inadequate in comparison.
  • Often the rest of the world asks how the parents are doing, not recognising or validating the grief of surviving children.  Siblings work through their pain in bits and pieces.  Play, school and continuing normal activities are powerful tools that help children and adolescents manage by moderating their grief, allowing them a chance ‘to be normal’.
  • Children and adolescents will reprocess the death and its impact over time as they mature and develop.
  • Some siblings are not verbal in expressing their thoughts and feelings.  They may choose not to talk much about their sibling who has died.  Sometimes, protectively, they may choose not to talk to parents and may turn to others instead.
  • Life for adults, ‘sibling’ memories may be triggered by places, objects and songs.  It is important to prepare siblings for these experiences and let them know this is normal.  It may even be useful to share your own parental triggers.
  • Many children report thinking about their sibling at special family times.  It may be helpful to anticipate this beforehand and talk about these important life events and the absence everyone feels.
  • Children may be encouraged to carry their sibling’s photograph or other small link that brings a touch of comfort.
  • Many children continue to talk to their sibling quietly internally.
  • Some prefer to start journals.

There are no right or wrong, “set’ ways to foster a sense of connectedness.  Rather an atmosphere of tolerance, encouragement and open communication are most likely to enable bereaved siblings to find personal and special ways to stay connected to their brother or sisters.

It is important to note that as this is a process that changes and evolves over a lifetime as do the needs of the grieving child.

A child who dies remains an integral part of an individual’s and a family’s past and present.  The bond in future will of course be different with change and the challenge for survivors is how to be and act in a world without those we love by our side in the physical.

grayscale photo of baby feet with father and mother hands in heart signs
Thanks to my good friend and colleague Vera Russell.

Grief……What is it?

I met recently with an old acquaintance who was bereaved.  She made the comment that she thought that she was ‘not grieving’.  When I asked what she meant by this, she replied that she had not begun to cry and was puzzled to find herself more angry than sad.  This conversation reminded me that we all have different perceptions of what grief is.  Such differences can make for misunderstandings of ourselves and others.

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Grief is a response, a reaction to loss.  As such, it is a resonable, natural and necessary part of dealing with changed circumstances.  It is unique, very varied, idiosyncratic and highly personal.  There is no right or wrong way to grieve.  Grieving styles even within families can be very different.

Grief is not solely the domain of a reaction to a death loss.  It occurs whenever one has to adjust to new demands where one perceives a loss.  So it could be in losing a pet, changing jobs, houses, losing a limb, or losing a job.  It does not matter it still has a component of grief.

Grief is influenced by a wide range of variables, for example:-

  • Gender
  • Age
  • Culture
  • Religious or philosophical beliefs
  • Individual personality
  • Previous life experience, in particular previous experience of loss
  • behaviour learned from one’s family  of origin
  • the availability, nature and quality of support and care
  • physical and emotional health
  • the nature of the relationship with the person who has died
  • the nature of the ‘event’
  • the meaning or lack of meaning that event has

Grief is a complex phenomenon, and we should rightly be wary of those who might want to make ‘one size fit all’ and offer overly simplistic notions of what happens to us when we are grieving or overly simple advice about what to do to feel better.

Furthermore, we experience grief along all domains of our being, physical, emotional, behavioural, psychological and spiritual.

Physical sensations may include butterflies in the stomach, breathlessness, tightness in the throat or chest, over-sensitivity to sound or light, muscle weakness, lethargy, dry mouth, palpitations or gastrointestinal disturbances.

Emotional responses may include sadness, anger, anxiety, guilt, shock and numbness, yearning, pining, loneliness or despair.

Psychological responses may include disbelief, confusion, memory loss, preoccupation, distraction or impaired cognitive processes such as decision making.

Behavioural reactions may include sleep disturbance, appetite disturbance, absent- minded behaviour, lack of concentration, disturbing dreams, social withdrawal, frequent sighing, restless activity or crying, purposeless activity.

Spiritual responses could be questioning the existence of God, or your belief system, preoccupation with the afterlife, issues related to meaning and purpose.

The above list is by no means an exhaustive one but serves to illustrate the range of experiences that grieving people may encounter.

Many of the above experiences are mainly present in the early days, weeks and months and will naturally and gradually subside as we find out feet in a world forever changed.

Questions of meaning, purpose and identity may span many years.  This is often very common following the death of a child which so profoundly violates the natural order of things and may pose many questions about how the universe works.

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In the aftermath of a significant loss, we may feel frequently overwhelmed and lost.  The world has become a different place, and we no longer feel safe and secure.  The world is no longer predictable or reliable as it once may have been.  Beliefs and worldviews about fairness, justice and the world making sense in some organised way may be seriously challenged.

In a profound sense, while the acute, intense experience of grief will change and become more manageable, grieving continues to the end of our own lives.

We may rebuild life around the pain of the loss and engage with life but we never stop missing someone we love or when a child dies.

Grieving people need to have this complexity recognised and acknowledged, to be heard and understood in an empathetic and compassionate way that gives permission and time to grieve without judgement and in a way that is right for them.

A recurring theme I have observed in talking with grieving people is that too often this understanding is missing.  It is often said to me that ‘people don’t get it’.

It is a very difficult thing to wholly enter into another’s experience and difficult to find words to describe an experience that is so profound.  Sometimes it is only other parents who ‘understand’.

After the death of a child, re-entering your previous world may feel strange as you rebuild your life and relearn the changed world.  These factors add complexity to grief.  Many families at this time need also to deal with perhaps having had prolonged periods away from home, authorities never dealt with before, everyday routines have disrupted and life seems chaotic in the extreme.

Fatigue and stress are daily companions.

All of the above factors contribute to the ‘grief cocktail’ following the death of your child.  So, when you are given advice or information about grief and what you should/should not do, or be doing trust your instincts.   Do what is right for you, when you are ready.

If it makes sense to your head, heart and gut, give it a go.  If not, leave it alone.  It is important to note that the “time-frames” allowed to those who are grieving and rebuilding their lives is often disrepectively short.

Being a bereaved parent, sibling, or grandparent is not a club anyone chooses to join.

Experiencing the complexity of grief and the task of rebuilding and becoming accustomed to a life forever changed takes much effort, hard work, time and understanding.

 

 

written with thanks to my colleague Vera Russell.

 

worth saying again…

This piece of writing about grief that circulates from time to time is worth repeating if only for those who have not seen it, or who have found their circumstances irrevocably changed.

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Please don’t ask me if I am over it yet.

I’ll never get over it.

Please don’t tell me she (he) is in a better place.

She’s (He’s) not here with me.

Please don’t say she (he) isn’t suffering anymore.

I haven’t come to terms with why she (he) had to suffer at all.

Please don’t tell me how you feel.

Unless you’ve lost someone in the same way.

Please don’t ask me if I feel better.

Bereavement isn’t a condition that clears up.

Please don’t tell me at least you had her (him) for so many years.

What year would you like your loved one to die?

Please don’t tell me God never gives us more than we can bear.

Please just say you are sorry.

Please just say you remember my loved one if you do.

Please mention my loved one’s name.

Please be patient with me when I am sad.

Please just let me be free to be my changing self.

Please just let me cry.

 

These words, I think, illustrate two very important features of bereavement.

First, that it is not something that people recover from.  Rather it is a process of becoming.  Becoming more familiar with a world that has profoundly changed and my moving to a place where the heart-ache is carried more easily and in a way that permits enjoyment of life again.

Secondly, it describes the fact that while people die and are physically absent…our relationship to them does not die.  Children who have died continue to be a part of their families in ways that continue to evolve over our lifetime.   They remain loved ones that families want to talk about, whose stories they will continue to want to share with others and with whom they will maintain a deep and abiding eternal connection.