Traumatic Brain Injury: 11 things I've Learned on The Road to Recovery
10 weeks ago I had a bad crash on my mountain bike. I smashed my face on a rock, lost consciousness for a few minutes and suffered a traumatic brain injury which has significantly impacted my own and my husband's life over the past 2 and a bit months. I've been an outpatient with EMMBIRS (Early Management Mild Brain Injury Rehabilitation Service) here in Adelaide which is focused on helping me get back to where I was pre-accident. So, 4 days a week, I have speech therapy, physiotherapy, occupational therapy, psychology and medical reviews.
Did you know that, in Australia, around 1 in 45 Australians acquire a brain disorder? In fact, 1 in 12 people are affected in some way by brain injury.
I'm not going to lie - it's been a tougher than expected journey so far. Thankfully, I was free of other major internal injuries but I sustained a forehead laceration (which I've had operated on twice to remove debris from my skull), vision loss and neuro-visual impairment, hearing loss and a fun little complication called dysautonomia.
Dysautonomia is when there is a dysfunction between the brain, autonomic nervous system, and cardiovascular system connection. This results in my autonomic nervous system being unable to appropriately regulate my heart rate and blood pressure during movement and activity/exercise. Activities, including standing up and walking, causes a flood of symptoms because of my poor heart rate and blood pressure control, and postural changes - even standing up or sometimes sitting too quickly from lying down - can cause wild swings in heart rate and blood pressure.
I'm now able to do a little more typing and reading, and had so many of these thoughts in my head I thought I would try and get some down in this blog. Here are 11 things I've learned over the past months.
1. 'It takes time' really does mean it takes time
So I'm not a millenial, but I'm truly a woman of the digital age. I want things now, and I'm used to getting them yesterday. Constant entertainment through Netflix and the internet, online shopping, Facebook, Instagram and everything else we take for granted. The term 'some things take time' really only applied to things getting lost in the post... until my head injury.
One of the first things you're told when you leave the hospital with a brain injury is that healing 'takes time'. Naturally, to me, this meant a few days. Maybe a week, max. After that, I'll be back to normal and good to go.
Yeah, nah. 10 weeks later and I'm only now beginning to understand the phrase 'it takes time'.
For over a month, I couldn't even be a passenger in a car without feeling violently ill. For weeks and weeks I couldn't bear light, watch movies or even look at my phone. I could barely walk 400 metres without needing a nap, I couldn't read, sit out at a cafe. Hardly anything that used to fill my spare time was accessible to me anymore.
What did I do? I did jigsaw puzzles. I listened to audiobooks (on 70% speed because normal narration speed was so fast I couldn't understand anything). In fact, I listened to the entire Harry Potter series in the first 4 weeks.
A head injury isn't like a broken bone. There's no standard timeline or ETA to feeling better. And yes, things take time.
2. Support people and family suffer too
This journey has been hard for me, but it's also been incredibly hard for my husband, my parents, my friends (especially Kelly, my friend who was riding with me the day my accident happened) and my business partner, Kate Bates.
It's hard to see someone you care about being carted off in an ambulance with blood gushing out of their head. It's hard to see them struggle to walk, talk and understand. It's been hard for my husband to balance looking after me with making sure the bills are paid (especially through COVID). It's been hard for my Mum in NZ to have learned about my accident but not to be able to get here because of COVID. It's hard for Joe to have to be the point person for all information about me, explaining time and time again how I'm doing to various members of my family, friends and people who ask about me.
Joe has been almost solely responsible for making sure I have what I need. Making sure I'm sleeping enough, eating enough, bathing, taking the right supplements. He's been responsible for cooking every meal, cleaning the house, changing the sheets, doing the laundry. He's been responsible for taking me to appointments - and boy are there a lot of them. He's been checking and responding to my texts, emails and phone calls,
All while trying to run his own business and make sure we have enough money to pay the bills.
All I have to do is make sure I do my exercises, rest and focus on improving. My husband and support people deserve much more of the credit for my recovery than I do.
3. Some days are just sh*t
Progress is not linear. Not even close. After a head injury, you learn about all of the things that are The Right Things and you learn about all the things that are The Wrong Things. The Right Things include things like resting (but not with a phone or a movie, just resting), napping, drinking water, eating nutritious foods and avoiding anything strenuous. The Wrong Things are everything you'd expect in addition to: taxing or lengthy conversations, multiple auditory sources, caffeine, alcohol, going on the computer, going for a drive and so many more.
Over the weeks, you learn that if you do The Right Things, you build up a bank of energy and feel pretty good. The more of The Wrong Things you do, the worse you feel and the longer it takes to get back to equilibrium. And that's mostly how it goes, except when it doesn't.
Progress isn't linear. Some days are just crap. Despite doing all The Right Things, you wake up crap, you hate everything and everyone, and you can't seem to get your sh*t together. I've learned it's all part of it. You just accept that some days are sh*t... and as long as MOST days aren't sh*t, or there's a trend where days / weeks are getting better, that's ok.
4. The wins are important, no matter how small
Things that didn't even used to be considered 'things' are now monumental wins. The first time I was able to shower by myself. The first time I crossed the street alone. Being able to be a passenger in a car without wanting to projectile vomit everywhere.
These are all milestones that, before my accident, were just things I did and didn't think about. But when you are trying to get back to where you were before your head injury, you can feel a little depressed because of how far away you seem to be. Sometimes it's nice to look back on the wins and how far you've come.
Often, my husband will say to me, "2 week ago you couldn't do that, and now you can!"
It's these types of wins that make me realise I'm much closer to recovering fully than I sometimes feel, and there are so many more wins to come.
5. Rest before you're fatigued (or you'll pay for it)
This is one of the hardest things to get right after a brain injury because physically tired (like when you've just done big exercise or are ready for bed) feels really different to brain and body fatigue. When you're physically tired, you know the signs, right? Before bed you might start yawning, or rubbing your eyes, or even nodding off. But brain fatigue isn't like that.
My speech is affected as well as my balance and coordination, ability to understand well (brain fog), headaches, sensitivity to light and noise. When I've done too much - the definition of which changes day to day - it's like a guillotine just cuts your power source. I have the added complication of dysautonomia (dysregulation of the autonomic nervous system) so my symptoms are also brought on by exercise.
Some days it feels like an impossible task because anything can bring it on, but just as an example, it's taken me several days to write this because I take breaks every 20 minutes or so which helps manage my fatigue. If I don't, I end up with a host of symptoms which are very difficult to get on top of.
6. The brain is an incredible organ
Did you know that the brain contains about 86 billion nerve cells? and billions of nerve fibers connected by trillions of synapses? I mean, wow. As everything we do, say and think is controlled by our brain, when our brain is injured, it affects every aspect of life.
I always had a healthy respect for my brain, but it wasn't until I traumatised it that I really appreciated how much it does for me that I don't even think about. When it works, everything is great. When it doesn't work, it all goes wacky.
I was lucky enough to be selected as a participant in a research project for Transcranial Magnetic Stimulation (TMS), specific to brain injury. TMS is a non-invasive procedure that uses magnetic fields to stimulate nerve cells in the brain to improve symptoms of depression when other depression treatments haven't been effective. The University of Adelaide is doing research as to how TMS can be helpful to those with traumatic brain injuries and monitoring their progress.
During a TMS session, an electromagnetic coil is placed against my scalp near the electrodes you can see. The electromagnet painlessly delivers a magnetic pulse that stimulates my nerve cells. Painless? Yes, but you can definitely feel it! I'd get twitches in my face and hand, and it kind of feels like a tiny woodpecker painlessly tapping on your brain.
How amazing is it that we are learning more and more about how our brains work? The concept of neuroplasticity, our ability to overcome trauma and create new neural pathways just astounds me.
7. Trackpants are life now
Seriously, I've never ever been a trackpants person (except for the matchy matchy stuff my mother would make me wear when I was in single digits). I'm either dressed in jeans, work clothes, activewear or cycling kit.
Since my accident, a new wardrobe essential was, well, essential. I'm certainly not going to be putting jeans on. Work clothes? I don't think so. Activewear is fine, but it's winter here in Adelaide and I'm not moving around fast enough yet to warrant them. And cycling kit? Let's just say I'm excited to put my gear back on but it's not time yet.
Enter: Trackpants. There's LOADS of different kinds, as I discovered when I went to Target in search of pants to wear that would be comfortable to walk/shuffle around in, lying down, spontaneous napping, or physio. Something respectable enough to feel I can wear out in public or have on when people drop around to visit, but nothing uncomfortable that I need to change when I get back home.
These merino trackies have become my absolute life over the past 2 months. How did I not know about these before??
8. Starting from scratch sucks
Before my accident I was riding 3-5 times a week. I was really getting into mountain biking, I'd even started taking coaching once a week to improve my skills. My fitness was really skyrocketing as was my confidence. I was getting up at 0530 for Zwift rides twice a week and was getting much more than 12000 steps a day on top of all of this. I was in good shape.
After the accident, I was unable to do most of the things I was accustomed to doing. If I walked 400-500 steps, that was a good day. Due to the Dysautonomia a 20 minute ride for me is now around 35 watts which is about
2% 20% of what it used to be :). I'm pretty much starting from scratch, and that sucks.
This is when I refer to #4 to remind me how far I've come, and not focus too much on how far there still is to go.
9. Sports glasses are a thing every cyclist needs
I always rode my bike with my regular prescription sunnies. I never really thought much about getting 'sports sunnies' like 'real cyclists'. My specsavers ones will do just fine, thank you.
That was my thought process until I could have lost an eye. This is a picture of me preparing for my second surgery after the first wound was closed with 5 shards from my sunnies still embedded in my skull. A big and not-so-fun part of my original stay in hospital was the doctor scraping glass out of my head. Lenses in sports eye-wear usually are made to be impact-resistant, something I never thought important until I considered what would have happened if I had hit the rock at a different angle.
(Yes, I was wearing a helmet, but the way I fell pushed the helmet up and exposed my forehead directly to the rock)
10. Self care doesn't stop just because you have a brain injury
I don't know how I thought I'd feel if I ever had a brain injury, but I guess I assumed all beauty and self-care things would be deemed unessential and be banished from my consciousness. And yes, maybe for the initial acute period, that was true - especially when I wasn't able to shower by myself.
But now that it's been 10 weeks and I am doing more and more myself, I find myself wanting those things back that I used to love. Getting my nails done, having facials and massages, going to the hairdresser (especially because those greys are coming whether or not I smacked my head)... these things might seem irrelevant, but they're not. They make me feel normal. They make me feel like I have some control over my day, and they make me feel like I'm giving my body and mind back something after the punishment I dealt it 2 months ago.
11. People fear what they don't understand
What do I mean by this? After my accident, my speech, my ability to understand others, my balance and coordination and my gait have been most noticeably affected. A month or so after the accident, I was able to leave the house on my own to get myself a coffee or just some fresh air. And that's when I noticed it.
People would cross the street when they saw me coming, especially if they had children with them.
People would politely smile at me if I spoke to them, but moved away as soon as they could.
People wouldn't make eye contact with me at all, or smile back at me.
People stared at me pityingly, probably wondering if I was under the influence of drugs or alcohol.
If I was out with my husband, people would speak to and look at him, but not at me.
Is this how minorities feel every day? Is this how POC feel at night when people cross the street to get away from them? Is this how people with disabilities or people in wheelchairs feel as us ablebodied people bustle around?
I got a brief glimpse into the fact that people, in general, avoid and fear what they don't understand, If you've ever felt this way by society, I'm so sorry for contributing in whatever way, big or small. It's not nice. It makes me feel really excluded and irrelevant so I can't imagine dealing with this all day every day.
I guess the take home here is be nice. You never know what people are going through, and you could make their day just by returning a friendly smile.
Continuing The Journey
This blog goes out to everyone who has suffered a brain injury, knows someone or cares for someone who has had a brain injury. I see you. I understand.
In continuing the journey, my goal is to get back on the bike - soon, IRL. Lots of people have asked me whether I'm scared to go back to riding. Truth be told, I'm really not. After all it wasnt the bikes fault and brain injuries can happen to people doing quite ordinary everyday things.
Thanks for reading my story. Please share your stories and your wins with me... and I'm looking forward to being out on the road and trails with you all soon.
Jordana (aka Chief Chick)