We Have Come to be Danced: Transforming Grief into Grace

Time of death: 8:12 a.m., May 15, 2019.

We were together, in love, and then we weren’t. But this isn’t a love story about a failed relationship; it’s a story of how death, in its many iterations, brings with it unequivocal, life-shattering grief.

I still wake up to his words: “I will always love you, but it is not healthy for me for us to live together as a couple.” The enormity of my illnesses weighed so heavily on him these past five years that he felt as if he was suffocating, but unlike me, he could walk away from the gravity of it all. And he did.

Kelley Harrell says: “Miraculously recover or die. That’s the extent of our cultural bandwidth for chronic illness.” As a culture, Americans do better with the finality of death.

There are religious and cultural conventions for observing the passing of loved ones. People attend funerals or memorial events, send cards and flowers, make donations to the person’s favorite charity, and bring casseroles. There is usually enormous support for the first weeks and months after a death, and often a more quiet acknowledgment among good friends for years afterwards.

But the same can’t be said about chronic illness and pain where the “loss” isn’t final and the emotional agony is ongoing. There are no cards that acknowledge when an illness becomes a continual challenge, unless it’s for a hospital stay or surgery. There are no ceremonies for when that individual’s life is changed immeasurably. We simply have no rituals for the sustained grief that keeps on giving or the agony that becomes a way of life.

Pain is a portal to transformation. It does not knock politely.

In a medical context, the word “chronic” is defined as a symptom or set of symptoms lasting more than three months. But if you live with chronic illness and pain, chances are you’ve met enough doctors and lived through enough disappointments to know that what most people experience as chronic is a mental or physical symptom that will likely never fully go away. Ever. The terrifying magnitude of this unspoken prognosis feels like a life sentence without the possibility of parole. 

With chronic illness and pain, there is a complete and total rupture of loss. The loss of our physical, emotional and spiritual bearings. The loss of relationships; our career; the very essence of who we “were” in the great “before.”

In the 14 years I’ve been chronically ill, I’ve lost more friends than I care to remember – ones I felt certain would stand the test of time and trial. I lost a marriage. I lost my last-and-waited-all-my-life-for-this-relationship-lover. I lost my career, and the dreams I had that can no longer be accomplished with this body of mine.

There is an alchemy in sorrow.

And with this profound loss comes intense grieving. There is no escaping it. It’s a necessary process with the power to heal. Yes, heal. You need to grieve your old life, your formerly healthy body, your dreams that are no longer possible – at least as they are framed in the context of “healthy.”

Most of us know about the five stages of grief that descend upon us when we lose a loved one: denial, anger, bargaining, depression, acceptance. But grief is not a linear process where we go through each stage in perfect chronological order, never to revisit the same stage again; it’s a continuous spiral.

And living with chronic illness makes that process even more arbitrary. Each time our health worsens or we undergo another surgery, another diagnosis, we experience a new wave of grief. It’s death by 1,000 cuts. It’s progression within progression, one disease playing off the other. It’s Relapse. Remission. Recurrence.

Most people living with chronic illness – many of whom are women – have at various junctures been blamed for their health. We hear this from the medical community, from “well-meaning” friends and family, from strangers who see us when we “don’t look sick,” as if there’s a certain Instagram image that encapsulates what it looks like to be ill.                

After hearing these accusations leveled at me time and time again over the past 14 years, I’ve found myself privately echoing their words.

If only I had taken better care of myself.

If only I had gone to the doctor when the symptoms first began.

If only I had found a better way to deal with my stress.

If only I had [fill in the blank]…

This vicious cycle of blame was a very heavy burden to carry, and over time, it broke me. If I couldn’t change my diagnosis, then I’d change myself. I did everything I possibly could to look and act like who I was before getting sick. I kept my body hidden, ashamed of the train track of scars that criss-crossed my torso.

I was seeking an aesthetic of grace – soft, flowing, dignified. But what I was actually looking for was Grace itself. Forgiveness. I wanted a way to grant my body and mind what I no longer believed they deserved: a pardon.

And with time that forgiveness did find me, because what I learned was that it was never about looking a certain way for my illness, it was about looking like myself despite it.

And those scars I kept hidden? They’ve taught me to embrace my body and honor its strength. They are a physical manifestation of what often feels like an invisible disease. My scars tell my life story. Despite all my illness has taken away, I refuse to let it take ME.

So, how do you own an illness or pain that refuses to go away? How do you prevent it from owning you?

Look for whatever soft threads of hope you can find in the face of everything the word “chronic” symbolizes: hopelessness. These soft threads of hope represent not recovery or success, but grace.

And with that sense of grace comes the acceptance of the new roots, the new soil, the next season of drought or abundance. We are all dangerously close to becoming; so close that we are a tight fist on the stalk of an orchid that sometimes dies mid-bloom. 

In truth, some things cannot be fixed, they can only be carried. Grief is one such thing. But learning to dance with grief allows for more fluid movement in and out of the different phases of grief. When the relationship to grief shifts, the dance is smoother, and transforms the grief into grace.

It’s a state of mind that’s able to ride life’s disappointments with acceptance. It doesn’t mean being a Pollyanna or being unceasingly positive. It’s knowing that even when we are made to suffer, we are also made to bloom. It’s knowing that the bare branches of winter become the hopeful branches of spring.          

Acceptance doesn’t mean you no longer experience these feelings of grief, it means setting aside shame and internalized ableism. Acceptance doesn’t mean resignation or giving up. If anything, acceptance is about renegotiating. It doesn’t mean it’s one and done. Like grief, which isn’t linear, acceptance is a process.

Acceptance can give way at any moment to a new round of grieving. When this happens, I’ve learned not to push it away because that aversion only intensifies the feeling. Instead, I allow it to be present, treating myself as tenderly as I can until it passes.

Part of acceptance is preparing yourself for the possibility that you’ll be chronically ill for the rest of your life. Without the burden “to get better” it enables you to move on with the life you have instead of continually fighting to get your health restored or your pre-illness life back. 

By being fully present and living life in action, we can stand shoulder to shoulder with our grief and not let it wash us away. We can burn back into the light, we can unravel, play, fly, fall, pray, and return to the belly of the sacred sanctuary that is living in a state of grace.

We have come to be danced…

Because there are no offerings to commemorate the way chronic illness and pain change a person’s life immeasurably, I created one. Well actually, I repurposed one. It’s a poem I wrote a few years ago about what happens to women in midlife, but I realized how well this poem describes transforming grief into grace. So I offer it here:

We have come to be danced

to shake off the dust of please and thank you,

Mother may I?

Permission

Restriction

We have come to be danced

like shape shifters morphing from one being into another

Flesh

Bone

Sinew

Soul

We have come to be danced

Not for the stories whose lives we hold

not for the stories yet untold

but for the gift that is ours to claim

We have come to be danced

To bear the lightness of years upon years

that fall away with each thrust of our hips

as we shake free of the things that seek to hold us in place

We have come to be danced

Into tomorrow

Away from yesterday

With scars and shadows

Courage

Grace

We have come to be danced

Into transformation.