In April of 2024 I experienced a concussion for the first time in my life. Even though I had recently done a first aid certification I knew nothing about concussions and have spent all the time since the injury in a steep learning curve. I mean all the time. It’s never felt like it’s gotten less steep.
You see, most of the resources you’ll find about concussions will give you a vague idea of recovery that guesses at between 1 and 3 weeks to being back to normal. This is the vibe of most information about concussions; it feels like it’s got hidden asterisks and ‘sorta, kinda, maybe’ caveats all over it. Concussions and head injuries are incredibly common and universal human experiences and current medicine seems to have just started to try to make up for lost time gaining knowledge on them. This knowledge gets patchier once you get into the territory of Post Concussion Syndrome (PCS). PCS is an acquired brain injury that affects 20% of people that get a concussion; it’s where the concussion doesn’t go away.
By May of 2024, I learned I was one of those 20%.
Note that photos for this blog post are from a visit to Entrecôte in Melbourne for my birthday before my head injury and I haven’t been able to post them since, due to the injury.
I’d gone to the doctor to get checked out after finding myself uncharacteristically overwhelmed, irritable, slow to figure things out and battling a general mental lag. It stood out while at the Ballarat Tweed Ride (an annual community event I organise). My experience of the day left me feeling incredibly embarrassed and confused and very aware that ‘there is something wrong with me’.
The doctor told me to drop everything and rest, so I did. This felt alien to me, as even my resting is usually productive. Not this time.
PCS is an acquired brain injury and let me tell you, while living with a brain that is cognitively impaired, it’s pretty challenging to be self-aware or to observe one’s own symptoms. One of the medical professionals I see asked the question at the start of the injury “what percentage of my usual capacity am I currently at?”. I answered 20%. 6 months later when asked the same question I answered 20% again and realised that right back at the start I was more like 2-5% and had absolutely no comprehension of the impairment. The medical professional said that it was common for people later in their injury recovery to have the realisation of how little they comprehended their own impairment at the start.
Just as my brain was slow, so was I in picking up all the ways I was impaired. I am usually very determined, driven and passionate, but I had started finding I had to push myself incredibly hard to be able to do the things that were expected of me. Not only did my brain and body not want to do anything, when I tried to do things, they were intellectually harder than they should have been.
There is a very big challenge in describing PCS in a way that the injury can be understood. My body had physical symptoms such as fatigue, cognitive impairment, neck and shoulder pain, coordination problems, memory problems, sleep problems, vision and hearing problems and heart problems. It also had a range of emotional symptoms like waves of moods that weren’t connected to anything. I might be watering a plant and feel angry or sad or have an existential crisis. I’d have to wait for my brain to regulate itself and let the mood pass, which may take a few hours.
The cognitive challenges meant I was slow to observe and process things, so it took days or weeks longer than it should have for me to recognise I was experiencing something abnormal and to take it to a medical professional who would help me fit it into the broader understanding of the injury. Accessing medical help was also slow. It was six weeks before I got to see a doctor who works specifically with concussions, who then referred me on to see a vestibular physio and a concussion psychologist weeks after that.
Over those weeks and months I was recognising and then managing various symptoms, so there may be a few blog posts to go into detail on some of those steps from recognition to rehabilitation.
As an example, one of the first symptoms I worked on improving was the coordination of my fingers. The impact of cognitive impairment on my communication has been multi-faceted. I realised when typing or even handwriting that my fingers would do things out of order. I may remember all the letters of a word I wanted to type (and I’m usually a very fast typer), but I had to slow myself down to a snail’s pace to get the letters in the right order. Even then mistakes still happened.
I started doing scales on the guitar and the piano to get my fingers familiar with themselves again. This meant that I could also use my ears to help me pick up when my fingers weren’t getting it right. Because of the fatigue along with the hearing and vision changes, I wasn’t able to do excessive amounts. My hearing had become very sensitive and my eyes would ache from too much complex visual input. So small attempts at the scales were both a good break from a screen and a good limit for my capacity.
So that’s how you rehabilitate fingers. How do you rehabilitate a heart that’s confused about what rate it is beating or why? Or a circadian rhythm? Or echoic memory? What even is echoic memory?
Each time I’d face a new symptom and slowly comprehended it existed then I’d type some wild thing into google like “post concussion syndrome can’t remember something just said to me,” and I’d learn that echoic memory is part of your sensory memory function where you can recall something you just saw or touched or tasted or smelled for a few seconds after. But I’d learn all these snippets of information in stages, because screens were brutal for my brain. Then I’d use a few days of energy to go to a medical appointment and get muddled trying to string a sentence together about the new symptom. Wish I’d had the cognitive function to make a note for myself. Go home and forget I existed for a bit.
Some of my memory from those first few months is patchy. I have to remind people when they talk to me about things I should know about. People will often hear me say “You may have told me, but please don’t worry about repeating yourself as it will help me remember.”
The symptoms were especially numerous at the beginning, but the most disruptive one that prevented a reprieve or healing from any other symptom was the damage to sleep. I would both have insomnia and would sleep heavily with intense and vivid dreams. Fatigue was my master and I would often have to adjust medical appointments if I was at its mercy. More than once I called my doctor’s office as they opened to reschedule an appointment after waiting for them to open after watching sunrise.
An internet search told me vivid dreams after a head injury were very common. This wasn’t according to a medical article but according to endless forum posts from people like me wondering why their dreams were in HD. It was exhausting. I’d wake up from them feeling like I needed a rest after a long day. You might be curious to know what the sleep data said about that, but I could neither remember to wear my sleep tracker nor tolerate the feeling of it on my wrist. One of the dreams, a road flooded as I was driving along it so I pulled over to wait it out at a house beside the road. The owners of the house were lovely and accommodating, and as I looked at the woman I realised it was my late grandmother. The picture of her face in the dream was as clear as a photograph. It was surreal.
The eventual visit to the concussion psychologist was life changing (honestly every medical appointment was, with every practitioner). She explained how much of my brain’s power was going in to healing (I later learned this also makes one crave sugar, which was unusual for me), and how if I diverted it’s attention away from that for anything I’d fall off a fatigue cliff. She was right. I’d rest for a day, do an activity the next day, think I was fine. The same day, that evening or the next day I’d be bedridden. The worst was when overdoing it would cause insomnia. To be so fatigued and unable to sleep, until my body would begin to shutdown. Then after 2 days of not sleeping the crash would come and I’d sleep for 12 or 14 hours if I was lucky and some idiot didn’t wake me up knocking on my door. Definitely typing that angrily thinking about the people who knocked when I had finally managed to get to sleep for an hour after being awake for two days, and was then awake for a further 24 hours.
What sort of things would cause a crash. You’ll love this.
A short list of dumb things that would cause a crash off the fatigue cliff:
– Sending an email
– Going to the doctor
– Answering a phone call
– Filling out a form
– Cooking a meal
– Too much light
– Multiple people talking
– Talking to one person
– Leaving my house
– Showering
– Washing my hair
An important note. ONE (1) of these things would cause it. Not multiple. Not two. One. That’s it. And then I would need days to recover.
The thing is, we actually have so little control of the things that give us any kind of sensory input. I could do nothing about idiots showing up at my house unannounced. Seemingly telling them not to was not enough. The energy to stop surprise guests and phone calls would derail the little energy I had for medical appointments and the obnoxiously large administrative load of managing the injury. Every doctor’s appointment has a form for the injury that I have to sign and send away. That was absolutely impossible at the start of the injury. And I also had to eat. And wash. And do housework. And surprise there is a house inspection. The minutiae of life is never more visible than when you are disabled from taking care of all the parts that make it up.
An average day would consist of no sleep, difficulty reading, disorientation from a complex visual in a movie, never ending tinnitus, webs and spots in my vision, getting overwhelmed by the touch of the fabric I’m wearing, incessant irritability, wanting to scream at the sky and never see another person, dozens of calls and texts and emails from people that there is no brain power to reply to, a headache, neck pain, the winter sun being too bright, nearly fainting when standing, hearing a noise but being unable to tell where it came from. Honestly, I spent quite a bit of time sitting on my couch staring at a pot plant.
With all of these ailments came the not knowing. When would I get better? Are we talking a couple of weeks? What was causing that particular symptom? Would I even be able to get better? Do people just not recover from this?
The concussion was in April of 2024. It’s now March of 2025, I’m now at about 30% capacity and am expecting a full recovery in a reasonable timeframe. I know what the forums for Post Concussion Syndrome are like though, and I feel for the many, many people who are 5-10 years into their injury without making the progress I have. To be one of the luckier ones with easily accessible health professionals and support for recovery is a gift, but it doesn’t undo the sting of the loss I’ve experienced.
To go from someone who was active, fit, engaged in my community, passionate, running projects, creating art, chasing my dreams and wringing every drop of life out of every day, to staring into the void in the future was devastating.
Absolutely everything that I had wanted or worked for was taken from me. The podcast I launched the week of the injury should have been finished 12 weeks after launch and I’m still working so hard to get around the injury and get it done. I haven’t had the ability to pitch theatre projects for the future so I may not direct another show for a couple of years, even if I recover sooner. Marital arts is forbidden as I’m currently not allowed to do much with my arms above my head and for the same reason playing guitar is forbidden (both of these are to do with neck rehabilitation). Rock climbing also banned. Telling people no and turning things down has had to become a necessary state for my wellbeing and I’ve keenly felt the incredible loss of time.
Can you imagine if some fairy suddenly dropped from the sky and vanished a whole year from your life? That’s me. That’s it. Trying to hold onto the life I’d built while it evaporated as quickly as water on a summer footpath. I feel it as someone who knows the value of and is hungry for every minute and I have been starved of the fulfilment of them. There is no pivot with this injury. There is no way of saying that I’ll just do… something else. What else? What? My whole fucking brain wouldn’t work. I wouldn’t remember the word for pie, or dog, or phone and would lose my cool trying to trash my brain to find the damn word I meant. Anything I would do wouldn’t just be done badly it would be done at a cost to my health. Fatigue cliff guaranteed. There’s no brain just for blog posts, or instagram diaries, replying to text messages, or making mood boards, or learning a new skill. The only thing that I could do, was the absolutely unproductive past time of rest. Even that wasn’t always afforded to me. And looking at how I’m going now, I’m not even recovered yet. Current forecast still looking very void-shaped.
However, now my brain is working more than it isn’t, I’m finally going to try and get some blog posts out about this absolutely awful experience. I do know that on the other side of the void will be the life I’m currently trying to rebuild. If there’s one thing that will definitely help it will be awareness about PCS, because lord knows I found it hard as hell to get the information when it happened to me.
– L
