Do We Know How to Heal Brain Injury Grief?

Source: Dieterich01/Pixabay

I’m writing a self-help book for people with brain injury to complement my memoir and website on brain injury, and I’m focusing on recognizing, processing, and healing grief.

I first wrote about brain injury grief in 2018. At that time, I felt heartened that experts had begun to recognize that it differs from other forms of grief and requires healing. Yet the fact of it being the most read of all my Psychology Today posts says that therapists, psychologists, psychiatrists, family, friends, and society continue to not address it. People remain stuck in that which they cannot process and heal.

How, then, while being stuck in grief, can injured people find the strength to buck standard medical care strategies and pursue treatments that restore their broken neurons?

Grief Is a Natural Response to Loss

I’m reminded of a BBC Studios clip on elephants stopping to mourn bones on their path.

The noisy family group gathers a little way around the bones. One steps forward and reaches out a trunk to smell them. She flattens the end of her trunk to inhale every molecule of scent left. The others draw closer. The first one raises her left forefoot and swings it like a metronome towards the skull without touching it. The family rumble deep in their throats, a backdrop of rising volume then quiet then rising again. They begin to grasp the small bones, to lift the skull, to hold the tiny, thin bones in their mouths, to cradle them in their trunks. The elephants fall silent as they pay homage to and hold close the long-dead elephant.

Reverence, cradling, and time are aspects of grieving that people with brain injury need.

How to Heal Grief?

The first step is to identify and recognize our extraordinary grief. We grieve the loss of ourselves, which is our most intimate relationship; the loss of specific abilities, skills, and talents that were so intrinsic to us that we didn’t think about them as separate; the loss of relationships, from spouses to siblings to friends; the loss of our dreams and plans, from the mundane of a dinner planned the night of the injury to life-encompassing dreams; the loss of our future, what might have been. But the second step is harder: How to heal it?

Many believe that grief tends to follow the five stages made famous by Kübler-Ross: Denial, anger, bargaining (the feeling of ‘if only...’), depression, and acceptance. But today Kübler-Ross’s perspective has generally been empirically rejected. I agree, because grief after brain injury doesn’t follow an ordered process. It hops and skips about. Over time new aspects to brain injury grief arise, and you find yourself back at the beginning or perhaps gripped by intensifying grief to paralyzing levels.

As I asked in "Brain Injury Grief Is Extraordinary Grief":

“Unlike when a person dies physically, the ‘deceased’ can return to life in part, distorted, not the same, or maybe fully years and years later either as a separate person, merging into oneself, or changing the new self. And a different relationship begins. The pre-injury person suddenly returning isn’t always welcome — it’s another change after having adapted to fundamental change and perhaps the injured person has come to like some of the radically different post-injury parts, like I liked not being self-controlled to the nth degree. It was freeing. How does one grieve through a changing relationship landscape within oneself?”

Chronic grief research may have some answers. Researchers are recognizing complicated or chronic grief as long-lasting painful emotions so severe that the person has trouble recovering from loss and resuming life.

Christopher Hall MAPS has noted that George Bonanno et al's 2002 research on spousal bereavement showed “Chronic grievers reported greater processing of the loss and searching for meaning compared to chronically depressed individuals.” New approaches are being developed to heal this kind of grieving. Although not the same as brain injury grief — which is not a one-time-event loss, but a series of losses over time that are triggered by brain injury — these approaches may point the way to healing.

In 2006 and 2007, Birgit Wagner et al studied the effect of emailed writing assignments over 5 weeks. Psychologists trained in cognitive-behavioral psychotherapy and therapeutic writing for post-traumatic stress disorder conducted the treatment.

“Posttreatment symptom levels were maintained at 1.5-year follow-up. These findings apply to both psychological indicators and physical health symptoms….[But] Because there is scarce research on the duration of complicated grief symptoms, it remains unclear whether the symptom maintenance observed is a result of the intervention.”

In other words, we still know little about complicated grief, nevermind brain injury grief.

Meaning in Grief

Part of grieving the loss of ourselves is searching for new meaning. Although we can find many books on how to find meaning, I haven’t seen anything addressing the unique circumstances of brain injury. Grieving brain injury must both embrace mourning the losses and helping to uncover new meaning in a way that suits the broken brain and incorporates continuing changes within the brain. Not using neurostimulation or neuromodulation to regenerate neurons and neuronal networks ends up suppressing the deepest need of restoring pre-injury functions. It perpetuates the grief from not recovering losses because deep down we believe it’s possible. Even if a therapist can successfully persuade a person to accept diminished function, they only push the grief underground.

And so without healing the brain, how can a person discover the fullness of new potential, new purpose, a new future—and rebound from their grief?

Copyright ©2022 Shireen Anne Jeejeebhoy