Secret Brains and Dark Matter

I’ve tried and failed to write out secrets for two months now. It’s a hard practice when you’re also keeping them.

That’s not to say I’ve lied. Although, as many an ex-lover will attest, lying by omission is its own kind of moral loophole. I used to tell the truth compulsively – personally and also publicly. It was healing, in a way, to hold truth in my own words, under the light I’ve rigged and focused for it. It felt good to connect via sharing, to enlist memoir as a tool for empowerment. That shifted, slowly, when people didn’t want the kind of truth I was experiencing anymore. Then it ended, because I was afraid of repercussions from people implicated. Then it became a block, because privacy is an addictive practice in itself.

Nothing wrong with privacy, of course. It’s healthy. A means to process – which I have most certainly done. But as someone who has gained the trust of their readers by sharing the strangeness of personal experience, it began to feel wrong to write out other people’s secrets instead. The stories were brutal, provocative – but they weren’t able to have the nuance that intimate personal reflection provides. And I felt exploitative in moments.  

I’m unsure why I’m writing this in some ways – we all know truth is subjective. People will tell you what they want you to know, not necessarily what happened. So let’s start there, because we aren’t in therapy or confession: this is what I want you to know.

My brain stopped working properly in August 2023. I couldn’t read, write or socialise properly for a period of time. I received care, and I’ve been in a process of neurological rehabilitation since. It began with a strange blurring of vision, dizziness and fainting, then a series of progressively worsening neurological symptoms (akin to partial seizures) that left me in a cognitive fog for hours afterwards. I was having about fifteen of these seizures a day.

When I presented to the neurologist with an abnormal EEG, I was distraught, and ready to hear I had epilepsy again (I grew out of it as a teenager). The neurologist observed me having an episode, and then put me through a four day ambulatory EEG at home, before confirming that it was in fact something else: Functional Neurological Disorder. I had never heard of it.

He explained that it was caused by a glitch in neurological software instead of hardware (so nothing visible: no epilepsy, tumour, structural damage, just neural pathways inexplicably bulldozing in the wrong direction, and getting re-inforced). Some people experience numbness, seizures, paralysis, ticks, parasthesias or complete loss of consciousness. There is no medication, only intentional rehabilitative re-wiring, and I couldn’t drive again until I was seizure-free for three months. FND can be caused by strange things, like previously having epilepsy, a fainting episode, a car crash, or even childhood trauma. Some people fully recover, and some people are disabled for life.

Don’t google it, he said. But I did, and then I hid in the hospital bathroom and cried. It felt as though someone had diagnosed me with hysteria. An emotional woman went through some big life things and had a nervous breakdown, instead of a high functioning professional has suddenly lost access to her only instrument.

It has taken me many months to understand that FND is not a dismissal of my reality, but a confession by medical professionals that it is simply off the map they currently have of the human brain. We have barely scratched the surface of neurology, much like we have barely scratched the surface of the cosmos.

In our understanding of the universe, we can identify certain visible and invisible elements, such as stars, galaxies, black holes, planetary behaviours -  we have research on certain things we can observe and study, but still more questions than answers. Other things in the universe, such as dark matter, break these rules. Dark matter cannot be observed, so must be studied indirectly. We still have no clear theory on what dark matter is, only that it is everywhere, affecting everything. The functional behaviour of neural pathways in the brain is a little like this galactic dark matter – not able to be seen directly, but profoundly weighty in its presence and impact. A complete mystery that holds everything together, and can allow everything to fall apart.

What scientists can attest works, is willingly entering into the mystery to find a way to hack it. Unlike a psychiatric diagnosis, the recovery doesn’t generally include talk therapy. The process was purely scientific. I needed to find what part of my brain was being used when the symptoms arose (Was it related to an activity, a smell, a sound, a posture, a location, an emotion?), and somehow divert my brain in such a way that the neural activity would scatter, regroup and eventually reroute.

I understood this concept. In the children’s hospital, I work for a charity that utilises distraction therapy – a proven tool for pain relief. I did hypno-birthing with my second child, and learned how to distract the signals my brain was releasing to change my experience of labour. This was different, however. I wasn’t trying to alleviate pain, I was trying to tell half of my body to stop being numb. To move, when it suddenly felt I couldn’t.

I soon found that my triggers included rest, loud noises, conflict and writing. I was baffled. I saw a neuropsychologist who told me firmly I needed to keep writing alongside whatever tools I discovered to assist me – that if I avoided it, the impact would be worse. So I did – but only just enough to keep the muscle alive. What relieved my symptoms, instead, was using a completely different part of my brain. I did crosswords compulsively, often multiple a day. I started to craft, to do pottery more intently, to use my hands to shape my feelings, instead of find the right words for them. I did Lego with my kids, a practice I’ve previously hated but suddenly found incredibly neurologically soothing. I realised I could disarm certain neural pathways with smells, with temperatures, but most notably with enough of a problem-solving challenge. And almost immediately, I began to get better.

Six months on from diagnosis, I’m 80% recovered. I am driving. I am acting and working. I can see and think clearly.

I sat down after New Year, and wrote an essay, a terrifying re-entry into my craft. It was slower than usual – harder for my brain that it felt it should have been. I’ve had many pieces rejected in the last few months, so when I found out it had been accepted for publication I was beside myself with gratitude. I felt like Sam Kerr, sidelined with injury, fighting to being game-fit for the World Cup (okay, I know, how dare I). After researching another novel for the last twelve months, desperate to write but unable, it felt like permission to start training again. Now, I finally feel I might be ready to put the story on paper.

Re-entering dreams of fiction has limited my writing here, and I’m sorry for that. Some people have subscribed financially and I’m incredible grateful. I intend to keep writing here, secrets or not. Perhaps you can follow me along the road of this next chapter. Perhaps I’ll even tell the truth.

For now, my face is numb, so I’m going to go and solve crossword number 90 in my beloved Puzzle Pad.

21 Down - Resolve/Determination - 4 letters.

(GRIT)