Wednesday, June 21, 2017

Good Grief

“Have you ever considered writing about this stuff?”

I looked at her and smiled, thinking about the hours I had already spent writing about disability.

“I think you have something to say.”

When I wrote Walking With Tension, one of the things I wanted to illustrate was the journey of grief I had walked down.  Even as I moved through each stage, no one ever said to me out loud, “You are grieving.” I only knew what I had learned about grief from Elisabeth Kubler-Ross’ On Death and Dying.  As a nurse, she was approached by seminarians who wanted to understand the process of grief and death.  They interviewed people who were dying of terminal diseases.  The book was so heavy and sorrowful that I couldn’t bring myself to finish.  I turned enough pages, however, to learn that these interviews were how the five stages of grief were discovered.  I met people on the pages of this book who were asking the same questions I was.  We both had lifetime diagnoses, there was no cure for any of us; the only difference is that they would have to die from their disease and I would have to live with my disability.

I thought, even after reading On Death and Dying, that Grief was a short-term relationship.  Grief was filling in on an interim basis just to help me move forward in life.  Grief helped me see that I wasn’t lingering over something I once possessed and then lost, but rather, I was ruminating on the loss of potential, things that will never be.  Small things like high heels and two-wheel bikes, and big things, like second dates, and babies.

I still didn’t realize this journey I was on until I had arrived at acceptance.  Like the Road to Emmaus, I didn’t recognize who my teacher was until she had disappeared.  Grief had held my hand, leading the way out from the shelter of denial that no longer seemed to protect me.  She sat with me while I cried, gave me energy to be angry, and kept score during the mental game of ping-pong called bargaining.  Once we got to acceptance, Grief carried me over the welcome mat and across the threshold into a house of wholeness and peace.  That’s where we parted ways.

Until she came knocking on the door.

At first, I wanted to yell, “Go away!  I’ve already dealt with you!,” slamming the door in her face.  But, I’ve discovered, she continues to knock on the door anyway, and I am slowly learning how to invite her in for a cup of coffee, because Grief has a few things to say:

Grief is unexpected, like an unwelcome house guest who arrives just as you were about to start your day.  You had other things planned, but now they will have to go on hold because Grief has arrived and needs tending to.

Grief wears different hats.  Sometimes she appears like sadness and depression, like a big thick cloud that will never go away.  Sometimes she looks like anger brooding under the skin.  Sometimes she is a bargaining auctioneer, ready to make a deal, hoping that some small exchange will result in a solution.  Grief is hard to recognize so it’s wise to memorize her wardrobe.

Grief does not show up to tear down the house of wholeness you have already built, but she does come to stretch out on the couch of ambivalence.  Sometimes Grief can be an expanding experience where you discover the mysterious ability to be joyful in your sadness, thankful in your anger, and content in your bargaining.  You develop a larger capacity to hold contradiction than you had before.

Grief neither takes over your life nor disappears completely.  Sometimes Grief moves into the spare bedroom temporarily and you swear she will never depart, but she does leave eventually only to return again.

It’s okay to say Grief’s name aloud, and it’s even okay to talk about her with other people.  To grieve is to be human, and sometimes we need others to walk with us when Grief is back in town.


  1. Beautifully written!! And, exactly what I needed today!

  2. I wonder if grief and lament are kissing cousins?

    1. Perhaps Jerry. That's an interesting thought.

  3. Grief does have a way of coming back from time to time when you have a disability, because you are reminded that your life is not the same as others. But I find it hard to talk about it with others. I think it makes them feel uncomfortable. That is why I started my online support group years ago for those who have the same genetic disorder as me. We can grieve together and accept what each other has to say and know we are not alone.

    1. Your words are very true Amy Jean. Thanks for sharing.