On Ambiguous Loss - Things We Didn't Know We'd Miss

by Penny Costello

March is Brain Injury Awareness Month, and our Dear Readers may know from past blogs I’ve written that I experienced a mild traumatic brain injury, aka a concussion after a fall I took in November 2014.  While I’ve learned much in these past seven years about living with an invisible injury, a recent presentation by Dr. Kelly Tamayo in Omaha on OvercomingAmbiguous Loss provided a construct and opened a portal to a new dimension of understanding and awareness.

Dr. Tamayo’s talk was geared to family members of people who have experienced traumatic brain injury. But the term can describe any situation where a relationship is lost or significantly changed, but the person is still there.

Dr. Pauline Boss, Professor Emeritus at the University of Minnesota in Minneapolis, coined the term 'ambiguous loss' in the 1970s, when many families had fathers and brothers in the military, missing in action or being held in prisoner of war camps in Viet Nam and Cambodia. Ambiguous loss is a loss that has no resolution, no finality.

When a person dies, they are no longer physically present, the body is gone, and there is usually closure that comes with acceptance of the loss. It's not as clear-cut when a person experiences an injury or illness that alters their ability to function as they previously had, which happens with brain injury, addiction, mental illness, and dementia. That person and the people in the family and friend circles experience ambiguous loss. The body is still present, but psychologically, the person is absent or significantly changed. It’s a loss without closure.

In learning of this concept framed by my experience with brain injury, I gained a new level of acceptance and understanding. Someone put a construct around something I’ve been living in for years, and when that happened, that construct “Clicked” into place, bringing epiphanies that helped clarify things I’ve struggled to make sense of. There’s a feeling of  "Yes! I knew this all along, but I didn’t put it together like this. Click. Now it makes sense!"

There more I absorb it, the easier it becomes to reconcile the abilities I had before the injury with the loss of some of those abilities or the lack of ease in accessing them now. And it’s not my struggle alone. It extends to my wife, my family, and my friends, who have experienced the changes in aspects of who I was before to who I am now. They have had to adapt and adjust as I have.

But in the face of loss, much has been gained. Since learning of the concept from Dr. Tamayo’s presentation and after talking about it with my wife, Kate, it has opened a new door to communication and conversation that we didn’t have before. We’ve both experienced ambiguous loss - for her, living with the impacts of my fall and subsequent post-concussion syndrome, and for me, living with her past battles with depression and continued life with a chronic pain condition. We each have challenges that drain energy and focus that we’d prefer to channel into our relationship, but some days we just can’t.

I describe ambiguous loss as missing the things you didn’t know you’d miss. But, the newfound ability to articulate it and talk about it has deepened our mutual understanding, compassion, and acceptance.

While Dr. Tamayo’s presentation is geared toward family members and caregivers of brain injury survivors, she opens her talk with other sources of ambiguous loss. Divisive political views, opinions, and beliefs about vaccinations, masking, rants on Facebook about any number of issues – all of these can shift the axis, causing changes or loss in relationships that are difficult to navigate.

In this 10-minute video on YouTube “The Myth ofClosure-Ambiguous Loss In a Time of Pandemic” Pauline Boss, echos these sentiments. Through the pandemic, we’ve experienced clear losses of life, loss of income, loss of certainty, and predictability that define our comfort zone. She also describes the losses of trust in the world as a safe place, trust in our leaders, trust in science, and loss of our ability to move freely about. Going into our third year of the pandemic, there is no definitive end in sight, no clear path to closure.

Dr. Boss explains that we live in a culture that exemplifies mastery over our challenges. The achievement of closure is the goal in a culture where resilience means never letting a loss or challenge get you down. We must prevail, we must recover, we must get over it. Anything short of that reflects a weakness or a character defect.

But when someone is living with their own or a loved one’s mental or chronic illness, addiction, dementia, or traumatic brain injury, encouraging them to find closure and get over it is not supportive. And it’s not kind.

My intention here is not to focus on grief and loss, but rather to shine a light on a path forward. To move beyond loss and grief we must first acknowledge and accept that a loss has occurred.

In a culture grappling with the mayhem of a pandemic with no end in sight, with political divisiveness that some refer to as a cold civil war, and the escalating conflict in Ukraine, maybe one piece of common ground we can share is the acknowledgment of our ambiguous loss of certainty, predictability, safety. Not to mention the weariness and fatigue that accompanies all that. We need to find our better angels, to dig deep, and come out with kindness and compassion toward ourselves and others.

Dr. Boss suggests that a key to living with ambiguous loss is to develop the skill of “both/and thinking.” Allow for the possibility to both move forward in a new way and remember the person/situation/relationship that is missing.

In listening to Dr. Boss, I’ve gained a new appreciation for and understanding of resilience and ambiguity. She defines resilience as the tolerance of ambiguity. “Click.”

Dr. Tamayo encourages us to focus on our past accomplishments, to trust in our ability to endure and achieve resilience, to focus on the things we’re doing right, and on our basic daily care.

She encourages us to explore these questions:

•       Who do I want to be? 
•       Where was I going before this occurred?
•       Where do I want to be in (x) years?
•       How has this loss changed me? Does it have to? Has it changed my desires, beliefs, values, or plans?

While pondering these questions, accept the loss, embrace your wisdom, strength, courage and confidence.

You’ve got this. We’ve got this.

_________

In these times of Mayhem, there are a couple of songs that I find very uplifting, and I’d like to share them here:

Resilient, by RisingAppalachia – “Power to the peaceful…”

Rise Up, performed byJordan Rabjohn and Katherine Hallum (mother and son duet – A-Mazing) – “All we need is hope. And for that we have each other…”

 

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