Grief on Extraordinary Grief

How do we cope when a loved one dies in the midst of grieving brain injury?

Posted Jan 13, 2020

Shireen Anne Jeejeebhoy
Source: Shireen Anne Jeejeebhoy

I wrote earlier about the extraordinary grief of brain injury grief from the loss after loss after loss we suffer. But I didn't write about what happens when someone we know dies when we're still trying to understand our own death of who we were.

Human life, unfortunately, includes death. Death of a loved one, a friend, a neighbour, a beloved dog, or an entire family or community. Different cultures have different ways of coping with grief and different funeral and mourning rituals. Rituals give us a way to process that the person is gone, to feel less alone as we share mourning with others who also loved the one who's died. But rituals and cultural traditions don't take into account the complication of suffering that kind of grief in the midst of brain injury.

Brain injury damages the ability to grieve; brain injury grief already overflows one's coping mechanisms.

Although some are cognizant that an individual experiencing a loved one after loved one dying can crush them into immobility, there is no recognition of what happens to a person who is struggling with brain injury grief, usually without any professional help, who then experiences a loss of someone important in their life — or the worst of all, their caregiver. In the latter situation, not only do they grieve the permanent separation of the one they loved from themself, they must cope with being tossed into the sudden confusing and frightening situation of losing their practical, cognitive, and emotional support.

When brain injury affects mood expression, it's not surprising it can damage the ability to feel grief and to mourn. For many years after my brain injury, I didn't realize I was suffering from brain injury grief, only that I wasn't being allowed to talk about the loss or even the injury. I knew though that I couldn't react in any sort of normal way to death. My immediate reaction would be extremely emotional, an almost tearing apart of my mind. Then as suddenly as it came on, it vanished, to be replaced by no emotion whatsoever. At funerals or memorials, I felt like a freak. It wasn't just that I wasn't crying — not everyone cries at funerals — it was that I didn't feel any sorrow, loss, grief, sadness, depression. Nothing.

How does one express such a seemingly heartless reaction to anyone including a health care provider? How does one find a way to understand it and navigate through it? When so much of brain injury life is judgement by others and mistaking of damaged neurophysiology as behavioural issues that need fixing, it isn't safe to share what seems on the surface like an anti-social state of being. It isn't that kind of state, though. It's probably part of the injured emotional centre's inability to transmit coherent messaging along its networks coupled with the brain's impaired processing speed such that the brain simply short-circuits. The transmission fails. And the result is no feeling whatsoever.

But we don't really know why that happens. We can only theorize because of the dearth of research. My experience is that most clinicians assumed when they noticed or were apprised, that it was something to slot into a DSM-V category instead of understanding it as injury. Luckily, as I've sought treatments, this strange reaction-non-reaction healed substantially. But I'm still left with the second problem: how do I cope when I've only just begun working on my brain injury grief? How do I process the death of a man important to me, highly influential and supportive, on top of the loss of myself?

At his funeral, we asked: "How can the world still turn if he is not among us?" I find myself unutterably exhausted beyond the fatigue from brain injury. Yet I read. I read because the ebook I'm reading is like reading this man's thoughts. I do it because it reminds me of the way we worked together, because I learn more about what he believed, because I can finally, at long last read a book he'd recommended. I read my ebook daily, pushing my brain to the edge of its limits, more determined than ever to practice my reading comprehension as a way to pay homage to the man who died too soon, who is permanently absent from my life on Earth.

I also write. I wrote a tribute. I write this post. Writing is my way of processing. And maybe that's how we begin to cope with the waves of grief smashing against the mountainous rocks of extraordinary grief: we do something intrinsic to our nature in a way that pays homage to the one we've lost. And maybe we should do that to mourn the loss of ourselves, too, when we try to work our way through the morass of brain injury grief.

Copyright ©2020 Shireen Anne Jeejeebhoy. May not be reprinted or reposted without permission.