Grief Shaming; Secrecy, Silence and Judgment

Living Grief is the profound journey of ongoing loss; where we can neither grief nor celebrate.

Yet, our loss is palpable. We feel it wrapped around our throat choking back vulnerability we've not ever experienced before. We journey through acceptance, make friends with physiological depression, butt up against anger, bargain with whoever or whatever holds our conscience...ultimately, finding the sweet spot of denial where we can see and be what 'is' and live in the joy of where we are at on our journey with our loved one. 

My gorgeous daughter, Sophia, turns 16 today...16 years more than we expected to have her, 15 years later with a palliative designation. 

This day comes with a myriad of emotions...from joy and celebration, to deep sorrow and grief.  I write countless blogs around Sophia's birthdays when I become infused with a sense of melancholy that washes into me like salt from the sea.  

It's been sixteen years...and year after year, time and time again, I get what I call 'grief shamed'.  How I grieve gets judged on a regular basis.

"Why don't you just love her for today?", "Everyone dies at some point", "She was given to you for a reason", "She's looks good, Bev!"...and my all time fav, "Oh, you've had her for longer than you expected".   Even in our world of medical support, I've been judged and words like 'too sensitive' or 'over reacting' have been slapped onto my forehead as Sophia's mother and family care giver.  FUCK YOU!  

How dare anyone judge or shame someone who is grieving or in living grief.  Even today, I will be met with comments like "You never thought she would make it to 16!", "Be happy, find the joy in the day", "Be grateful you still have her".  Seriously?  Living Grief isn't about not being grateful, not finding and feeling joy.

Brene Brown believes "Shame needs three things to grow exponentially in our lives; secrecy, silence and judgment."  In my experience, very few people can discuss living grief or this journey of being a mom of a child with a life threatening, life limiting condition.  Quite often, I am met with silence or one of the above well-meaning but incredibly naive and insensitive quotes pushes me into silence. 

It isn't necessarily a secret that Sophia or even my grief exists. But more often than not, we and our living grief exist in isolation in our community.  When you have someone in your life who is dependent on oxygen, or has physical and/or medical needs and limitations, your world becomes smaller.  The opportunities to go out into community become less and less.  We live on a farm so our isolation is exacerbated, our world even that much smaller.  We depend on people coming to us.

Secrecy, silence and judgment...

Caleb Wilde, a funeral director, wrote about how he, himself, grief shames and grief measures.  But he realized..."the problem with grief shaming and grief measuring is this: there isn't objectivity.  Grief is proportional to love and intimacy.  The more you love someone and the closer you are to them, the more you grieve.  And telling someone that their grief is misguided.. is wrong."

So what is the antithesis to grief shaming?  "When we find the courage to share our experiences and the compassion to hear others tell their stories, we force shame out of hiding and end the silence."

It is about creating safe space to share, it is about being open with our vulnerability, it is about meeting those like me, living grief, where we are at...just meet us where we are at, no shame, no judgment,creating a vast field of compassion...

Today, I will be swallowed up in denial...and will let joy breathe for me, filling up my lungs until I can cry no more and the melancholy rocks my broken heart to sleep. 

Happy Sweet Sixteen, Living Grief...

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