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.

 

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