Grief, loss and the injured brain
‘We are made of starstuff’[i], writes Carl Sagan in The Cosmic Connection, but what do the 3.2 trillion atoms of my body have in common with the dust of stars? And how does my atomic body find its way back to the stars?
These are the questions I asked myself many moons ago. Questions my Mum “cannae be bôthaired wi’”.
Nine months of being bedbound - fearing a future state of increasing inanimacy – will ferment such inquiry. I arrived at this point after several years of debilitating symptoms of vertigo, loss of coordination and proprioception, and ferocious brain pain. I suffered years of misdiagnoses and physical deterioration with no prospect of medical intervention.
Such questions, the eventual discovery of a subarachnoid cyst (causation unknown) and an ultimately magical craniotomy led me to undertake a medical sciences degree, majoring in neuroanatomy and neurodegenerative diseases. During my study, many of my original symptoms returned, and new ones appeared.
I coped. I had a trove of symptom management tricks, meds and therapies stored over fifteen years of living with my acquired brain injury. I dealt with the new symptoms reasonably well; I applied the research, self-advocacy and approach I had employed to deal with my known ones.
It was when Mum died my existence trembled with equivocation. A murmuration of a hundred griefs flew into my soul’s bruised sky for the first time.
Until then my sense of place in the world, my very personhood and how it inhabited my brain seemed undeniable and unshakeable against a clear blue sky. Even with a lifelong disability that profoundly changed my engagement with the world and my lifestyle, I never lost a sense of my self.
Something new happened: my life existed in dreams. Over 151 nights in rows of a ten-hour sleep, feature films reeled on my cranial white screen. Each morning I’d wake exhausted, questioning what they were about (aside from grief) and what was going on in my brain. Why was a tornado season of every unspoken and vocalised grief playing out in this dreamscape nightmare? The dreaming was shattering into dust my very self-concept and reason for choosing to be responsive to life.
One morning I realised: Mum was the last eternal witness to my existence. With her death, I became unmoored. What is the point of ‘doing’ and ‘being’ when she does not ‘see’ me? No longer gives me ‘voice’?
Then I awoke to two earlier iterations of this feeling—though they would register as smaller peaks on an ECG and EEG—and they both resided in my body. First was child sexual abuse (CSA), and the second was my acquired brain injury (ABI).
This realisation prompted me to draw on my training. With CSA, I investigated how trauma affects the nervous system (and subsequently intergenerational trauma, when I learnt my mum and her mum had also survived CSA); this significantly assisted my healing, particularly around self-forgiveness. With my ABI, understanding how the damage has impacted my brain’s anatomy and neural pathways has helped me tailor therapeutic rituals and been instrumental in proudly claiming my disability identity and access requirements.
Subsequently, I went in search of how grief and loss impact the brain, the neuroanatomy of dream-making and whether there was connective tissue and/or neural pathways forged or swept away between the two.
Being knocked off kilter and having the earth taken away beneath my feet, funnily enough, mimicked my original brain symptom: vertigo. If Mum was my magnetic North, then naturally my sense of self and its position in the world—inner and outer—would be lost. Given previous research I had done on vertigo and knowledge of the neuroanatomical/ neurophysiological breakthrough by Prof John O'Keefe, May-Britt and Edvard Moser on our brain’s GPS[i], I wondered what happens to a person when their guiding principle is gone, and they become lost—physically in space and time and in themselves—and how it manifests in the brain.
Finding my constellatory hub
Recent discoveries[i] have shown that the founding pillar of our personhood, mental time travel (that is, the ability to make and recollect memories, reflect and imagine), and our spatial navigation emerge from the same region of the brain: the hippocampus. While the hippocampus is usually described as ‘the human GPS’, scientists are discovering that it is a far more comprehensive and plastic part of the brain, and not simply a device that identifies a fixed position by coordinates. As M.R. O’Connor writes in her book Wayfinding: The Science and Mystery of how Humans Navigate the World[ii]: “it builds representations of places based on our point of view, experiences, memories, goals, and desires. It provides the infrastructure for our selfhood.” The legendary 2000 study of London taxi drivers’ brains showed that after their exam of London streets there was a significant increase of synapses and grey matter in their hippocampus[iii].
How and when does the hippocampus build such representations if we have adopted a point of view and are in the throes of experiencing it? Well, in our sleep. And we cannot dream without sleep.
From ground-breaking rat studies by MIT neuroscientist Matt Wilson and other subsequent research,[iv] we know that while we are sleeping, the hippocampus consolidates memories, experiences, and impressions and draws out a series of patterns that are constellated according to an organising principle to build a model, which is, in essence, the self.
Therefore, sleep is essential to our sense of self and dreaming is the critical process.
During REM sleep, the important memories are transferred to long-term memory as the brain sorts through new information and connects it to older scraps of memory. Dreaming also mostly occurs during REM sleep.
What happens then when your constellatory hub is gone? What does your brain make of this existential loss to self? For the brain deals with loss all the time—whether through physical absence, memory loss, mental illness. Yet we know, through trauma studies and epigenetic regulation of DNA, that people and experiences literally change the material makeup of our brain, imprinting remnants of themselves, and so in effect are not lost to us. I am literally straddling two worlds—wake-walking where Mum is gone and simultaneously dream-walking where she is everlasting.
My parents sent me to boarding school just before I turned six on the other side of the world and for the next four years only saw them once a year, twice if lucky. I left home at seventeen, moving interstate, and then my parents moved overseas. In my adult life, I saw my parents every four years on average. I also experienced my dad as physically there but personally gone due to advanced Alzheimers. I believed it inoculated me to the ravages of grief due to surviving the many episodes of abandonment in my childhood—which is smaller scaled grief.. As a child, I had learned to understand parental absence did not mean they had died and that they still loved me, and held me close in their hearts.
Fixing Love’s broken GPS
The narrative our brain makes from a string of losses depends on our proximity to the person lost — how affected we are is determined by how close we are to them and how close the loss to death (i.e., degree of finality). With Dad’s earlier death I didn’t experience despair and yet Mum’s death was the final abandonment of my closest person.
The neuroscientist Mary Frances O’Connor has undertaken extensive research on how grief affects the brain. In her book The Grieving Brain: The Surprising Science of How We Learn from Love and Loss, she writes: “If a person we love is missing, then our brain assumes they are far away and will be found later. The idea that the person is simply no longer in this dimensional world, that there are no here, now, and close dimensions, is not logical.”[i] This is amplified for children reared mostly apart from their parents/primary carers. I remember those cold and snowy mornings in the window seat of the large bay windows in the stone turrets of the boarding school. My nose pressed up against the window to catch the warm currents from the radiator under the box seat, trying not to cry as I waved all my friends off in car after car. Their parents hoicked their daughters’ tartan trunks into the boot. Me watching the last gehl leave, wondering if maybe Mum would surprise me, just this once. Cookies and hot malt drink my consolation.
Through research, O’Connor and her colleagues have drawn on fMRI imaging that shows not only is there a spatial-temporal-motor GPS in our brain’s materiality (hippocampus) but there is a built-in GPS that positions a person’s closeness to us in the posterior cingulate gyrus. This bit of neuronal hardware constantly scans and receives sensory signals about a person which is continuously re/calibrated according to how psychologically close or distant we feel at any present moment—tightening or loosening the bonds. Death of my true north has scrambled, what Maria Popova calls, this ‘GPS of love’.[i]
Our brain must make a new map without this person, at least redraw a map that makes our sense of our self in the world whole again. And as I understood and practised as a child, dealing with grief is also a learning. And we are learning that the person we love is structurally encoded in synapses never to be replaced or lost, no matter how disoriented our ‘GPS of love’ is.
Dreaming a new life made of star stuff
Given my acquired brain injury, which affects the pons and cerebellum, I sought to understand what functions these areas perform and their potential role in my grief. It turns out the pons contains nuclei that deal with sleep and may be involved in generating dreams, as well as being a relay centre for signals to and from the cerebellum.
The cerebellum comprises 50% of the brain’s neurons (the neuron transmits signals) and we’ve long known that the cerebellum coordinates voluntary movement (that is, sensory-motor control), and yet new research shows that it does a whole lot more. Firstly, the cerebellum is the primary integrator of information for the brain. The cerebellum condenses all the information it receives from the body’s receptors for vision, positioning and motion and gatekeeps it on its way to the cortex. This research found that in fact up to 80% of the cerebellum is dedicated to functions other than motion and proprioception, leading to the second new finding, namely, that it acts as the primary quality control unit for the brain’s functional activity related to emotions, memory, language, planning and abstract thinking. It continuously monitors the areas of the brain performing these functions, reviews and improves them thereby making the brain perform better.[i]
Consequently, any damage to the cerebellum will result in a poorer gating mechanism leading to sensory overload, as the cortex is overwhelmed by information it previously didn’t have and can’t manage. Given this less-fettered information journeys through the pons, it could reasonably account for the intense and elongated state of dreaming, memory-ising and emotional fallout as well.
Further, my brain’s performance will deteriorate as the ‘review and repair’ service is logging out and unable to undertake quality control of my emotions and memories. Subsequently, my ability to remap and reorient my spatio-temporal-motor GPS and ‘GPS of love’ will take longer, require greater relearning, and most likely more therapy. An upside is, with five months of daily dream journalling, I have a lot more material for my future writings.
I finish this essay on the first anniversary of my Mum’s ashes scattering ceremony at a Viking Fort across the water from the Buddhist Nun’s monastery on Holy Isle, the Isle of Arran in Scotland.
I think back to those questions of stardust and atoms and know this, paraphrasing physicist Alan Lightman:
At her death, Mum’s mass comprised of 63.7% Oxygen, 21% Carbon (C), 10.1% Hydrogen (H), 2.6% Nitrogen (N), 1.4% Calcium (Ca), 1.1% Phosphorous (P) and a sprinkle of 90+ chemical elements.
In her cremation, her water evaporated, her C and N combined with O to make gaseous CO2 and NO2 which mingled with air. Most of her Ca and P baked into a reddish-brown residue and scattered into soil and on the wind.
And in time her atoms slowly spread and diffused into the atmosphere.
And in a hundred or so days: some of Mum’s atoms, the vaporous water, condensed into rain and fell to earth to be drunk and ingested by flora and fauna; some of her atoms were photosynthesised turning into leaves, branches, tissues and tubors; some O2 bearing atoms were breathed in by creatures and built into their bones and organs; some of the animals and plants that consumed and ingested her atoms were eaten by pregnant women and a year later babies are made of her atoms:
“And the individual atoms, cycled through her body and then cycled through wind and water and soil, cycled through generations and generations of living creatures and minds, will repeat and connect and make a whole out of parts. Although without memory, they make a memory. Although impermanent, they make a permanence. Although scattered, they make a totality."[i]
[i] Cited in above link
[iii] Maguire EA, Gadian DG, Johnsrude IS, Good CD, Ashburner J, Frackowiak RS, Frith CD. Navigation-related structural change in the hippocampi of taxi drivers. Proc Natl Acad Sci U S A. 2000 Apr 11;97(8):4398-403. doi: 10.1073/pnas.070039597. PMID: 10716738; PMCID: PMC18253.
[i] Quote by Carl Sagan in his book The Cosmic Connection published in 1973.