The Invisible Disability

I tell people I’m cured, but it’s not true, not really. Perhaps in the sense that there is no more active cancer forcing its way into the valuable real estate inside my skull, it’s true. It was the vacuum that the cancer; the brain tumour; the aggressive growth with an intention to murder me left once it had been cut away by the surgeon’s knife, burnt away by the radiation and poisoned away by the chemotherapy, it was this vacuum that left me with something that can never be cured.

An acquired brain injury (ABI) or traumatic brain injury (TBI) as it is also known is something that happens after birth. It is an injury that can come in many forms. For example, a degenerative neurological condition, a head injury arising from a motorbike accident, sporting injury, assault,  a stroke, lack of oxygen or blood supply to the brain, substance abuse and addictions, brain cancer, radiation, chemotherapy and brain swelling. Acquired brain injury arising from domestic violence situations is the leading cause of disability and death in infants and children subject to violent home and family environments. Most people in Australia would be familiar with shaken baby syndrome; a condition inflicted on an infant by violently shaking a child, causing the head to whip violently, resulting in damage to the brain and neck.  Particular segments of society are subject to significantly higher rates of brain injury in adults.  In these segments, it is women who are at much greater risk of brain injury when compared to broader society and the risk that men in broader society are subject to. 

“You go home and sort out your things,” the radiation oncologist said to me as she patted my hand. She wanted me to prepare for imminent death, and as I stood next to the huge window that showed people going about their everyday business down below I wondered what had happened to my life because I used to be like those people down below; someone with a future. I couldn’t grasp how this cancerous monster could snake its tendrils out of the abyss in an urgent need to acquire all of me; my past and also my future.  “No!” I wanted to shout at her as she wafted away from me, through the waiting room and into the guts of the hospital, instead I kept quiet and told myself that none of it was real.

In a population of 24.6 million people, it’s estimated that around 700 000 of us are living with TBI. This condition is more common than most people realise, which is one of the reasons why it has come to be known as the invisible disability and the hidden disability. It’s also known for this because it’s often not obvious that a brain injured person even has a disability. “You look fine,” is a common remark because many people with TBI look and sound like people who don’t have TBI, but these people are dealing with complex problems that in some instances have almost destroyed their lives. These struggles remain hidden because even if they were aired it is impossible for people who have no experience with TBI to understand what it means to have lost almost everything and not be able to find a path back to a life that no longer exists. Looking fine is one thing, but being fine is another issue entirely.

At home, after the hospital, I couldn’t work out what was wrong with me. “I don’t know what I’m doing,” I’d say to whoever was listening. “Why did I come into this room?” I’d ask with growing frustration. After I moved house I couldn’t remember leaving the old one and couldn’t make out how much time had passed since I’d left the last place I’d lived in or how much time I had to get ready before going somewhere or how long certain things took. At the shopping centre I’d stand at the top of the escalator alarmed to find myself in a place full of light, sound, people and smells and not know why I was there or how I’d even arrived there to begin with. I got lost when out walking, I couldn’t recognise people and I kept forgetting almost everything that happened. Endlessly tired, I felt as though I just couldn’t cope, but I was unable to articulate what it was that I couldn’t cope with. I became depressed, began drinking too much and when my best friend and her family turned their backs on me I became suicidal.  I didn’t know I had a brain injury because no one had thought to tell someone who was meant to be dead in three months that they now had to live with TBI.

Brain injury is difficult to treat because there is no way to predict how an individual might respond to treatment. The issues that arise following TBI are complex and significant resulting in long term impacts to the lives of the brain injured person, their family and often broader groups at the societal level. “My husband told me he didn’t want to be married anymore,” said a brain injured mother in her early thirties. Her husband had left her when he found out that she needed brain surgery. “My son is fifty-five. He can’t live by himself because he can’t make decisions. I really wish he wouldn’t ride his bike around town, but it’s his only outlet and realistically, I can’t stop him from doing it.” He had been brain injured in a terrible car accident in his twenties. “I hate it when people finish sentences for me,” said a man who was dealing with the effects of a stroke. It took him the best part of five minutes to get these words out. “I wish things could just go back to how they were before. People think I’m lazy now, but I’m just so tired all the time,” said another stroke survivor.

Fatigue crushed in on me from all angles. “How will I ever get through this day?” I wondered aloud everytime the sun came up. It wasn’t just fatigue weighing on me, but despair and grief for all that I’d lost and all that I knew I’d never be. It was the guilt I felt at having survived when others weren’t so lucky and it was my heart broken at having been discarded by those I always believed had loved me unconditionally. Ultimately, I felt as though nothing I ever did was good enough and that there must be something inherently wrong with me. I couldn’t stand my own reflection in the mirror because my identity had been wiped out, all that mattered had been cast aside and I no longer knew who I was or what any of it meant.

Personality changes, behavioural problems, emotional lability and cognitive impairment are major issues for those dealing with TBI.  There are general clinical tools for treating these types of problems, but none necessarily specific to TBI.  Research on the topic can be contradictory to personal experience because there is no definitive description for how someone’s behaviour, emotion, or personality might be affected following TBI.  For example, some research downplays the prevalence of post-traumatic stress disorder (PTSD) following a TBI, especially if the TBI occurred in a medical setting, while opposing research and personal accounts evidence otherwise. This serves to demonstrate how complex it is for healthcare professionals and policy makers to make decisions that will deliver the best outcomes for the most people and to tailor treatment to individual needs.

“You could have contacted disability services and asked for special consideration,” the clinical psychologist conducting a neuro-psychological assessment on me told me right before I was about to do my final exam for university. After struggling for so long and living with TBI for five years I’d finally worked out what was wrong with me.  At uni I’d found a DVD about brain injuries in the library.  Someone had shoved it in the space that was meant for a book I wanted for an assignment about ecosystems.  As I watched the DVD the shadow began to lift from my soul. The band around my heart loosened and the rock in the base of my abdomen began to break away. “This is what’s wrong with me,” I whispered to the empty lounge room, awestruck.  I felt immensely relieved, and it wasn’t until later that I started to feel angry about the way I’d been treated and ignored by the health care professionals involved in my hospital experience, and by those who were meant to care about me.  Being overlooked by the health care professionals is not acceptable, but being discarded by those who were meant to care about me is nothing short of repugnant. How do they live with themselves, I’m often brought to wonder. And they wouldn’t be the last ones to treat me in this manner, which likely demonstrates a broader attitude to disability within Australian society.

Often people with disabilities are excluded from participating fully by indirect discrimination. For example, the local theatre provides several disabled parking spaces, but the time limit is two hours. The council has long term parking, but the distance from the town centre precludes use by those with mobility problems. This means that having a problem with mobility makes it hard to access the theatre for cultural events, which often extend beyond a two hour timeframe. Certainly these issues can be planned for in advance and innovations applied to address any problems encountered in this situation, but this assumes a certain level of problem solving ability and a certain level of peer or personal support. This is not always available to all people. “Sometimes it’s easier just to stay at home,” said a lady in her forties after surviving a stroke, and I wondered how she was perceived now, bereft of nuance;  her face permanently set in the same emotionless expression and her voice delivery the same toneless quality; all due to stroke.  

I wanted to give up drinking because it was beyond my ability to control. I tried so hard to cut back, but always ended up drinking more and the more I drank, the worse I felt about how disrespectful it was to be living like that. I wanted to do more with the second chance I’d been given, but I didn’t know how to do that because I felt so unworthy of everything. I didn’t know how to live through the emotional turmoil that my life had become since my brain injury and I was using alcohol as a way to cope. I wanted so much to be “normal” and after I graduated from uni I kept trying to get a job, but was rejected over and over again, each time, my heart breaking anew.  Even though I’d worked out that I wasn’t crazy, just brain injured, I was depressed and remained suicidal for a long time. I fought with my husband, who had stood by me since the first day I’d  become ill. I fought with his parents, who he relied on for support, I fought with my mum about the way I felt about myself, and I fought with the world because I felt like I didn’t belong. I never stopped fighting with myself, but finally I won the fight against alcoholism and gave up drinking. I just stopped and never had another drink again. This wasn’t easy to do in a society where alcohol is so important to our way of life. It’s still not easy and it’s been many years since I’ve had a drink, but I’m so very glad I did it.

It’s estimated that up to eighty percent of people with TBI acquired their brain injuries while under the influence of alcohol or drugs. This includes secondary damage such as injuries resulting from impaired decision-making while under the influence or from direct damage due to overconsumption and the toxic results of this on the brain.  Having TBI increases the risk of having another TBI and this is compounded by the consumption of alcohol due to the brain’s increased sensitivity to alcohol following injury and the impairment of cognitive abilities necessary to make competent decisions and effective choices. Some research suggests that there is no safe level of alcohol consumption following TBI.  This is difficult to accept in a society where the consumption of alcohol is widespread, acceptable and often expected, particularly in social settings and celebratory gatherings.

I started to accept that I’d lost almost everything that was once important to me and as it shifted aside, newness began to make its way in. Accepting the way things were and the questionable things that people had done to me didn’t mean that I forgot any of it or forgave any of it, it meant that I was able to move forward. I was still confused a lot of the time, but then, isn’t that just life? It’s hard to know what happens because I’m human and what happens because I’m brain injured, and if it’s even worthwhile figuring out the difference. I got a job; one that I loved; one that I was good at. “I can’t believe I finally did it!” I shouted at my husband after the call came to tell me they wanted me for the position. Mum sent me a card and I got lots of congratulatory messages from everyone who knew how hard I’d worked. “You’re going to be really good at this job,” one of the messages said. It was all so exciting. I didn’t reveal that I had a brain injury because I knew that being brain injured would not impact on my ability to do the job, and it didn’t. It didn’t impact on anything until I unwittingly told someone I had TBI. Not long after that I had to leave. I couldn’t cope with being treated like I was stupid, yelled at for being “dangerous”, picked on and accused of selfishness. It’s funny how I was none of these things before they knew I was brain injured. I’d been brain injured for fourteen years before I got this job, but to them it appeared that it had only just happened and all of a sudden I was a different person. “I don’t want to work here anymore,” I said to the lady in the office. I got in my car and drove home. No one called to ask if I was ok or why I left. I was sad, but mostly I just felt really, really sorry for them. It made me realise how shallow life must be for people like this; people who have no compassion and understanding of what it’s like to live not just with TBI, but with any kind of challenging circumstance that is beyond their own personal experience. It fell on me how difficult life must be for those of us who have no agency; people who aren’t like me and have no voice; all of us who can’t be cured.

Note: I have used published information to write parts of this post that relate to statistics, clinical and social perspectives, but I have paraphrased everything and nothing has been copied and pasted. This article was intended as a speech to be presented at the National Brain Injury Conference and as a result I did not include citations.

Brain Injury Hike Tewantin to Caloundra 80km (but probably more)

Fundraising and Awareness Hike: 450km total

8th of October – 11th of October

Right before I got to the Sunshine Coast I had to make up the distance I had missed out on by not being able to walk the Cooloola Great Walk (it was closed by QPWS). I did that at home by walking to my mum’s place along the Buxton Road (22km), and walking around Burrum Coast National Park and out along the road that connects Walkers Point to Woodgate. It’s pretty cool living right next to a national park:

The melaleuca circuit is 12km. One time, at the bird hide, a snake slithered over my hand. Another time, I saw a musk duck. That was pretty cool. Better than the snake.

Echidna all scrunched up. I tried to sneak up on him/her to get a good photo, but they must feel the vibrations of anything that is approaching and go straight into scrunch mode.

The wetlands on part of the Melaleuca Circuit.

Note on Sunshine Coast Section of hike: The hike jumped around a lot here. I expected to be able to walk straight from Tewantin to Caloundra, but wasn’t able to garner the interest of any caravan parks in helping me out with a free tent site, which meant I had to trek over, across, back, forwards and sideways to cover the distance, while being accommodated very kindly for free by some people I’d known for a long time, but mostly by people I’d never met before.

The first day on the Sunshine Coast was really hard. It was soooo freakin’ hot and the concrete paths really hurt my feet. It was good to learn this though. For the rest of the hike I stayed off the concrete and walked on the grass/dirt next to it.

The cool guy I’m married to dropped me near the Tewantin primary school and I walked from there.

I walked past a cafe, where some cyclists were having coffee. One of them was super-friendly. He was really excited about what I was doing and he gave me donation. I thought it was a good sign and that everyone I came across would be friendly, but it didn’t really work out like that. I tried smiling at everyone I went past, but pretty much everyone wouldn’t even look at me and the ones that did looked away really quickly. For most of the day no one smiled back at me and the main reaction I got was the stupid-weird look that people seem to give me no matter where I am. After a while I stopped smiling at people and just looked down when I had to walk past someone.  It’s really hard to get past this because I can’t understand it. Some of my friends reckon that people ignore me because they’re city people, One of them said it’s because people are jealous of me (why anyone would be jealous of someone carting a 20kg pack is anyone’s guess!) and someone very close to me said that it’s because while I’m doing this I am a “proper weirdo”. I think I agree with that the most. I mean, not every single person looks at me like I’m the biggest weirdo of all time, but I’d have to say at least 95% of them do. It’s no big deal in areas with a very small population, but in a place like the Sunshine Coast and in Brisbane, it’s constant and it kind of got to me a little bit. The scenery was pretty good though:

Looking across the Noosa River

I did have some nice people speak to me in Noosa. The first one was a lovely lady from a shop called Poke on Hastings. Her name was Deanne and she came over to me and offered me to have anything I wanted to eat from her shop. I said I couldn’t eat anything at that point, so she gave me a nice drink instead:

Down the road a bit another lady came out of a coffee shop and was really interested in what I was doing. Her name was Jodie and she was really beautiful. She gave me a donation. I couldn’t remember what the name of her cafe was, so I googled “Jodie cafe Noosa” and got the right result: Puncheur

After that I didn’t talk to anyone until Sunrise or Sunshine Beach (I can’t remember which one). There was a dude there standing on seat looking out at the ocean.

Me: Are you going surfing?

Him: It’s low tide (said with derision).

Me: Does that matter? (the waves looked perfectly fine to me).

Him: You should have a different hat (didn’t answer about it being low tide).

Me: Yes, thankyou, but it’s hard to hear traffic and bikes approaching from behind with a broad brimmed hat.

Him: Humph (I could tell he wanted to argue with me about it. I didn’t bother pointing out that he should probably be wearing a shirt for his own sun protection considering he was so concerned about mine).

Me: How far is Coolum? (I didn’t actually care, I just wanted to redirect away from the hat topic).

Him: All the way up there (while pointing and smiling as though I should be afraid of how far away it was and that it would be impossible to actually walk all that way).

I had to get away from this guy as quickly as I could, so I made up some excuse about having to meet someone and started walking again. He was the biggest knob of all time!! He reminded me of the people I knew back in the nineties when I lived in Mooloolaba; the ones who all thought their shit didn’t stink.

Coolum waaay off in the distance. It’s actually so far that you can’t even see it.

At Peregian I spoke to a really nice lady called Rachel. She had a big scar on her shoulder and I asked her how it happened. “I was living in Brisbane. I was absorbed in my life there and just like everyone else, I was in a hurry all the time. I tried to beat a car at a pedestrian crossing and slipped on the white marks because it was raining and I was in such a rush. I fell down and smashed my shoulder against a high curb. It was a bad thing to happen, but it changed my life. I’m so much happier now. I moved away from the city after that and slowed the pace of my life. I should never have moved away from Coolum. I love it here.” I got the feeling that she could no longer see what she had found so attractive in the fast-paced city life.

I couldn’t work out how to get back onto the bike path. Rachel wasn’t sure, so after I left her I asked a man in a car, who was fairly useless at polite interactions, so I asked a lady in a shop, who pointed out that the path was only about 20m away on the other side of the carpark. Not long after I got back onto the path I walked through the area that had been burnt by a deliberately lit bushfire several weeks previously. One of the houses had lost its back fence and the shed was warped and twisted. There were melted surf boards and body boards inside it. The fire had licked up against the sides of homes that I walked past and many of the fences had been destroyed, not to mention the gardens and big trees. Some homes were totally destroyed in the fire, but I didn’t see any of these, thankfully. It must have been horrible to see the fire approaching through the bushland that was just across from the homes I walked past.

It seemed to take forever to get to Coolum. In fact, it took me over seven hours. WTF! It was only meant to be 20km but someone said later that it was probably closer to 40km because of how I walked by the longest route possible rather than the direct route I put in on Google Maps. That seemed plausible. I started whinging out loud towards the end: “How much further is it for fuck’s sake? Whyyyyyy is it so far? I can’t believe how long this is taking! Come on, am I there yet?” Lucky I was on my own. I saw a sign in the distance that I thought said CBH. That’s got to stand for Coolum Beach Hotel, I thought and it did.

I’d set up a Facebook event to start at 4.30pm, but no one came. I tagged the Coolum Beach Hotel in as co-hosts, but they mustn’t monitor their social media because they never got back to me (in fact, none of the venues did for any of the events I tagged them in on). There were big comfy lounges in the beer garden and as I sat there I watched a huge water dragon slide out from underneath one of the couches:

I got some donations from a few people in the beer garden. One of them was a lovely young girl who shyly handed over her money. Another was a strange man who came over to my pack and traced his finger across the words on the sign as though it was helping him to read it. I wasn’t in the frame of mind to put up with shit.

Him (in a gruff voice): Are you a good one or a bad one?

Me (in a no-bullshit voice): What do you think?

Him: I just wanna know if you’re one them good ones or bad ones.

Me: Well, what do you reckon? I’ve walked a long way to get here, I’m not getting paid, I’m raising money for a good cause, so you work it out for yourself.

He must’ve been happy with that because he gave me a $4 and off he went.

I had a few people like this on the last long hike I did in 2016. I’m not sure what their caper is, but I found last time that I had to speak to them the same way they spoke to me otherwise I had to put up with a mountain of bullshit. Sometimes it’s ok to put up with bullshit, but after hiking almost 40km I really wasn’t in the mood for it.

That night I stayed with some people from the Maroochydore STEPS group who were very kind to come and pick me up and take me back to their nice home in Buderim. It was quite a drive.

The next day we all went to the STEPS meeting together and I met some lovely people, one of them a man named Wayne who had come to be brain injured when he was run over by a car. His story was very similar to mine in that he didn’t know he was brain injured for a long time and thought he was going crazy, which is exactly the way I felt in the five years I lived with brain injury before I knew what was going on.

After the meeting I went to Sunshine Plaza and walked around a bit. I had to wait until the afternoon to meet Olivia who had offered for me to stay at her place via a request I’d put on Facebook. I’d never met Olivia before and I told myself that she’d be similar to a really awesome friend I had when I was younger; Erin, and it turned out that she actually was a lot like Erin! I had a great time staying with Olivia and her family. The house was full of people and her two boys Remi and Marli were both really cool dudes. I talked a lot with Olivia’s father, Serge and he had a lot of really wonderful things to say about his wife and his family. He was obviously very proud of them all. Olivia very kindly gave up her own bedroom for me and I had an excellent night’s sleep.

The next day Olivia took me to the Sunshine Coast University Hospital to look at the radiation oncology unit. She said we could go behind the scenes and see the planning section. This was interesting to me because I’ve had radiation therapy for brain cancer and while I knew planning had been done for my treatment, I didn’t realise how involved that actually was. I had no idea that physicists had input and that there were teams of people working behind the scene to make sure that the treatment was delivered effectively. I got a bit upset at one point and started pissing out tears. It was because the lady giving me the tour was explaining to me about why they have a photo wall. I couldn’t get my head around the fact that people wanted a photo to remember having radiation. I couldn’t wait to forget it.

Olivia very kindly drove me all the way back into Mooloolaba, which is where I’d scheduled a Facebook event at a cafe. I sat there like a twat for over 30 minutes. The dude behind the counter didn’t even say hello, which I thought was weird considering I’d called him to let him know I’d be coming and also seeing that my pack took up about one third of the entire floorspace in the tiny cafe. I wrote a story about being invisible and having an invisible disability in one of the adult colouring books he had on the table, then I left. I wonder if he read it.

It was impossible to work out where to walk today! I had printed maps (I don’t have an iphone), but the detail wasn’t good enough or maybe my spatial reasoning deficit wasn’t really helping, but man oh man, I walked in the wrong direction, back again, then back yet again, all the while being on the wrong side of the canal. I got the shits really badly and almost started crying a couple of times. The more I looked at the map, the less it seemed to make sense. I had to ask a lot of people where to go and in the end I found my way to the right road. As a result of all the to and fro, it took ages to get to my destination and I was really tired.

I stopped in a Maccas and a friendly lady there offered to give me a lift. I said no, but she gave me a donation anyway, which was nice. I had a thickshake and I felt better after that.

I was walking to Harmony Estate, which is on the other side of Sippy Downs to stay with Peter, who I’d never met before. Just like Olivia, I’d come across Peter on Facebook when he very kindly offered for me to stay at his place. I had a great time with Peter and his very cool dog, Bessy. I felt like Peter was the male version of me and I imagined we could easily be best friends in the non-hiking world. We talked about music and watched a DVD of Midnight Oil’s tour in 2017. We’d both gone to their gigs on that tour. I wish I had taken a photos of Bessy. She looked like a nice dog I used to know called Manoo, who was a big Irish Wolfhound.

I was looking forward to the next day because I was walking through the Mooloolah River National Park:

When I got in there it was great and I thought, I wish it was all like this.

Then I got to this sign:

What, does the Aemula fire trail go straight down into the centre of the earth? And which way does the Boronia fire trail go? Is it left or right? This wasn’t on a straight stretch of trail, it was on a corner. Luckily I came across some people not long after I saw this sign and was able to ask them where to go. I had a map, but couldn’t make sense of it. I followed the people I met, even though the lady was walking stupid-fast (around 7km/hr by my estimate). I wondered if she thought that I wouldn’t be able to keep up with her and that she’d show me up. It wasn’t me that couldn’t keep up, it was the poor man she was with, who I think was her husband!  They went out of the park and back into civilsation and I somehow managed to find the right road.

I had lunch at a fish and chip shop and a guy (Terry) came and sat down with me and started telling me about his brain injury from a car accident. He showed me his arm that had this horrendous scar on it and said that it had nearly been cut off, and that his hand had undergone 24 surgeries. He said he had to relearn everything again. He was a really nice guy and I really liked talking to him. He beeped at me later when he drove past me.

Not long after that, a car driven by an adult, but full of kids (about 15 -16 years old) drove past and they all hung out of the car yelling about me being a legend and giving me the Shaka sign, which was pretty cool because I could tell they were all surfers. It made me feel really good.

It took over five hours, but I finally made it to Caloundra:

After that it started pouring rain and I caught a bus back to Mooloolaba where some awesome friends had rented a fancy unit for two nights. The bus driver was the nicest man of all time. He was so helpful to everyone and really tolerant towards a loud mouth yobbo up the back. The yobbo kept swearing and the bus driver kept apologising to everyone on the bus for it. The guy was obviously a dickhead, but the driver didn’t lose his cool and just kept being really nice to everyone who got on and off the bus as though the yobbo up the back wasn’t even there. I wish I could be more like that! (The bus driver, not the yobbo).

The more I seek, the more I get free, and the more I get free, the more I seek

 

 

 

 

 

 

Me and the Food

Today I spent eight hours getting the food packed up and organised for my brain injury hike. 

This is a typical ration for one day:

Some of the meals have dried vegetables in them and then there’s the dried fruit. The fruit and veggies went from this:

To this:

Then it all ended up looking like this:

Packing up the food isn’t my favourite thing. I get quite anxious over it. I’m not running around with my arms flailing about, knocking into walls while crying and screaming or anything, but I do worry about getting it exactly right (I can’t handle the thought of having to go without my dinner!) That’s not at all helped by the high fire danger in just about all the areas I’ve planned to walk in. I’ve had to remap the route twice due to national parks getting closed to walkers due to the high fire danger. It was kind of annoying, well, a lot annoying, but at least I had enough time to plan alternatives and I haven’t lost my shit at all yet, which is pretty damn awesome! I did almost start crying the other day when three people in a row, who were your basic big ol’ meanies, were really mean to me when I asked for their help about camping, but then I met someone nice, who was happy to help me, so I got over being upset about the three big ol’ meanies. My idea of a big ol’ meanie is probably not your idea of a big ol’ meanie, but if you read this post, you might get where I’m coming from.

From adventure it begins

 

 

450km and Brain Injury Awareness Week

 

This week it’s Brain Injury Awareness Week. Yay for my brain, yay for yours and yay for the collective brain. Insert fist bump or maybe brain bump here.

If you saw me you’d never think I had a disability. That’s what it’s like to live with what is known as the Invisible Disability: the prosopagnosia, the dyschronometria, which still impact me and the aphasia and dysphasia of the early days are buried behind the “normality” of my appearance. So is the severe spatial reasoning deficit, the compromised working memory, emotional hyperactivity and the grand old executive functioning deficit. I’m not providing any definitions for these things because I was given none when I was discharged from hospital and I had to work out from scratch what the hell was wrong with me.

See, no one told me I had a brain injury. They just packed me off home with instructions to sort out my things and prepare for imminent death. They literally said that to me. One doctor patted me on the back of the hand, nodding and smiling as she said, “now, you just go home and sort out your things. I won’t need to see you anymore.” Then she turned on her heel and walked off into the waiting room full of people, all of them looking up to her with hope in their faces as she floated by. I looked at the big window in front of me and wondered if anyone would notice or care if I just smashed my way through and fell four stories to the concrete below.

I did smash my way through, not the window, but life instead. I refused to believe that I would die and I nearly lost the fight several times, but I’m still here, stronger and better than I ever was before. What happened to me changed me, my life and the lives of those who chose to stick around when things got really hard. There’s no going back to the way things were before and that was so difficult to accept. I lost a lot and sometimes I still lose, but that’s ok because that’s what life is, not just because I’m brain injured, but because that’s what happens when you’re a member of the human race.

I never really understood disability before I became brain injured. I certainly had no idea what being brain injured meant for a person’s life and the wide-reaching impact that it could have on their families, friends and communities in general. There are over 700 000 Australians living with brain injury and I’m one of them. So are my friends in my local STEPS support group. I see what my friends struggle with and that’s why I’m reaching out to everyone I know and everyone I don’t know to help me raise $40 000 to support what The PA Research Foundation does through STEPS:

https://www.teamparf.org.au/users/jennifer-parry

I’m walking 450km on my own from my home in Woodgate to the Brisbane CBD to kick off my fundraising. This map involved physical cutting and pasting (like we all did in primary school), photography and drawing. This is what happens when you’re not a cartographer and don’t want to spend a week trying to get Google Maps to do what you want it to do. As a result, this map sucks, but for the itinerary click here.

An adventure I will make

 

Something Brand New

It’s good doing stuff that makes you feel nice. This is why trying new stuff can be hard; it makes you feel uncomfortable and your poor little brain goes, “No! I don’t wannaaaaa!” while figurativley throwing itself on the floor, crying and flailing about.

I like tricking my brain into action. See, this is what it does: I tell it that it would be great to try this or that and it gets excited, but then it goes back to its comfortable little life because it believes that nothing will change. Take for example this:

Me: I want to drive a truck.

Brain: Yeah, that sounds awesome, but as if you’ll ever do that.

Me: Yeah, but I reckon I could.

Brain: You are full of shit.

Me: Yeah, well watch this!

So before my brain could get in the way, I rang the Semi School and made an appointment for a driving lesson in an MR truck and did it.

I’d been wanting to drive a truck for years. Just because. I was uncomfortable with trying something brand new, but once I got going I was surprised that it wasn’t really that hard. The instructor told me not to bother with anymore MR lesson and that next time I should just go straight to HR.

I wrote a while back about how we can hold ourselves back from doing new things because we believe we aren’t “that kind of person”. I never thought I was someone who could drive a truck, but guess what? I am.