The last time I tried to research grief from brain injury, I found nothing helpful. After giving up years ago, I tried again in April. I was surprised and heartened to find that brain injury grief was being recognized at long last. Skimming articles from the U.S. and U.K. validated my belief that brain injury grief is a different and difficult beast from other kinds of grief.
Janelle Breese Biagioni wrote, “Then we have what I identify as extraordinary grief resulting from a disease such as Alzheimer’s or a catastrophic injury such as a brain injury. This kind of grief is profound. [bolding mine] People must grieve who they were, and the family also grieves the person who is no longer there, albeit physically present. Sadly, I think society as a whole is only beginning to understand how profound this type of grief is ...”
I’m not sure society is recognizing it. In my experience, there has been a distinct lack of understanding and support for grief arising from my concussion; after eighteen years, I've received no therapy for it and was recently outright refused, with the health care professional averring that, in his expert opinion based on his decades of work, anger and negativity are a bigger problem and must be treated. Anger is part of grief. Negativity arises when unimaginable loss after loss is neither treated nor allowed to be mourned.
Profound grief ignored is not going to lead to a positive outlook on life.
(Note: some people are lucky enough to have their concussion eradicate anger and affect. Life is easier to endure.*)
Biagioni continues, “Dr. Alan Wolfelt’s Companioning Model identifies potential grief responses as shock, numbness, disbelief, disorganization, confusion, searching, anxiety, panic, fear, physiological changes, explosive emotions, guilt and regret, loss, emptiness, sadness, relief and release, and finally, reconciliation and healing.”
Brain injury complicates this process because the injury itself causes confusion and disorganization; post-traumatic stress disorder (PTSD) overlaps many of those listed states, as well. How does one tease out the cause for each of those listed grief responses? How does one address multiple causes for one state and know in which order to treat the causes or if best done simultaneously?
She continues, “If one is allowed to truly feel — to grieve, this will lead to mourning. Mourning is the process of taking those feelings from the inside to the outside. It is giving expression to how we feel. This may be done in a variety of ways, such as funerals, talking, writing, art, and music. Wolfelt describes it like this: 'Mourning is grief gone public.'”
I have to wonder if we need to develop new rituals of mourning for internal deaths, deaths like reading, identity, musical accomplishment, hobby skills, memory, specific identity memories, sense of humour, emotions, etc.
In Beyond Kübler-Ross: Recent Developments in Our Understanding of Grief and Bereavement, Christopher Hall, reviews the newish idea that "... death ends a life, not necessarily a relationship. Rather than ‘saying goodbye’ or seeking closure, there exists the possibility of the deceased being both present and absent."
In traditional forms of grief, the deceased remains present in the relationship, not within oneself as a separate person. This is not the case for grief after brain injury. Each one of us has a relationship with ourselves. Brain injury both kills off the original person and severs the internal relationship. Yet 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?
Dr Rudi Coetzer wrote with great insight:
“... brain injury survivors and their family members often find traditional approaches and support networks are unable to adequately address the problem. Reaching the acceptance stage is difficult and by no means a certainty, but after brain injury things can be further complicated by the unfamiliar, complex and often unpredictable effects of the condition ...
“From a more academic perspective, factors such as time since injury, awareness, family support, pre-injury personality traits, social networks, and severity of the injury can all influence the person’s experience of grief.
“Furthermore, there is often a focus in the literature on the loss of ‘how things were’, but again, as a clinician, working psychotherapeutically I also often hear about the grief regarding the loss of ‘what might have been’, were it not for the injury.”
I see person after person with brain injury having to subsume their grief or being labeled depressed when, because their profound grief is left untreated, they ruminate on loss of self, loss of talents, loss of skills, loss of dreams, loss of purpose, loss of their future. It's time therapists, from psychiatrists to grief counselors to family therapists to psychologists, began to recognize this profound grief and to develop effective therapeutic methods to heal it.
Copyright ©2018 Shireen Anne Jeejeebhoy. May not be reprinted or reposted without permission.
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Christopher Hall MAPS, Director, Australian Centre for Grief and Bereavement (2011). Beyond Kübler-Ross: Recent developments in our understanding of grief and bereavement. InPsych. Vol 33, December, Issue 6.
*If you're unsure why I used the word "lucky," please check out cognitive empathy as in this situation and consider how much easier it would be to endure without anger and affect. To read more about The Ramryge Angels and the Angel of Denial depicted in the photo for this post, please see my Flickr photo page.