Tag Archives: brain injury

The Invisible Disability

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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.

Sucking really Sucks!

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I had my first ever tap dancing lesson yesterday. I was really excited about it because it’s something I’ve always wanted to do and I had new shoes, so of course, that in itself is very exciting and I was dying to try them out:

I was disappointed with the first lesson and I had to fight hard not to get pissed off at myself (I couldn’t follow what everyone else was doing), at the teacher (she didn’t explain things very well [at all really] to begin with) and at the other people in the group (they’d all been dancing together for more than a year and all pretty much ignored me). To be really honest, it was actually hard not to cry because I felt so stupid and like I didn’t belong. The whole entire lesson the teacher and the other ladies talked about their kids or the kids they were teaching (some of them must have been teachers) and because I don’t have kids (or a job) it was like I wasn’t even there because there was no way for me to participate in the conversation. At one point I almost said, “Oh, yeah, my friend’s daughter does that too.” But I stopped myself because it would have drawn attention to how strange it was to invoke a friend’s child when they were all talking about their own.

When I felt like I wanted to cry, I said to myself, “no, fuck you. I’m doing this. It doesn’t matter about any of that other shit. I’m doing it.” This is the same inner mongrel that rises up and gets me through stuff when it’s hard. I wanted to play the brain injury card in my mind. It’s story I tell myself about why it’s hard for me to learn new stuff: I have a brain injury and that’s why I can’t get pattern-based activities (like dancing), but this time, I tried something new and told myself that there would be no brain injury card and that I would act like a “normal” person and just learn without telling myself little stories about why things are difficult. I also made a promise that I wouldn’t reveal to the teacher or the class that I had a brain injury. It’s certainly a fact that I have a brain injury and as a result, face challenges that non-brain injured people don’t, but revealing that I’m brain injured has never helped me in the past, so I decided that it’s pointless revealing that aspect of my life to anyone anymore.

I guess every approach to learning something new is going to have its limitations. If I learn at home on my own, I’m limited because it takes a long time to work out how to do stuff, and even then, I don’t know if I’m doing it right. If I learn in a group, especially a group that’s already formed, like the tap dancing group, it’s hard to fit in because groups have a dynamic and once a group is formed, it’s difficult for it to absorb new members, especially if the common ground is something that is not shared by the new member (in this case it seemed to be kids).

After feeling like I stuck out like a sore thumb in the dance class I got to feel like I was on display as I walked back to my car. A group of about 12 bearded, black t-shirted, rum can toting dudes were hanging out in front of a house across the street from where I’d parked. All of them leaning on cars, they stopped chatting and stared right at me, one guy elbowing the nearest bloke and pointing at me with his bearded chin. I got in the car, gave them a huge smile and waved at them as I drove off. None of them waved back. I went and got a pizza and ate the whole thing without feeling one shred of guilt because when you burn a bazillion calories everyday you can pretty much eat whatever the hell you like and still have legs for days.

It’s really very hard to suck at stuff, like so hard. I never really considered how shitty it might make me feel when I decided to commit to a year of sucking. I just told myself a little story of how it’s going to be awesome to learn all this new stuff, and oh, imagine all the new and wonderful friends I will make! Happy days afoot.

The way to manage this is to keep returning to things I know I’m good at or at least I’m comfortable with because to suck 100% of the time, would just, well, you know, suck! I’m 100% in control of my own body and I feel good about that and happy about all the work I’ve done and still do to make sure that I’m mentally and physcially fit and healthy: counting calories, running, cycling, walking, swimming, skipping, hard style dance, hiking, reading, writing, cooking and just generally being creative.  This is what some of that looks like:

A day out of my calorie book. I aim for 1700 calories a day, so this one is a bit over at 1935, but I allow myself this as it’s still in deficit (anything below 2000).

The blackboard where I track my weight lifting sessions. I don’t like weightlifting, but I do it because I like the results, and I’m also comfortable with it. If I didn’t record it on this blackboard, I’d never have kept at it. I rub it off everytime it fills up (like now) and start again with heavier weights. To keep the hatred at bay I never try to change the sets and reps. It’s always two sets, one of six reps and the second of four reps. The abs along the bottom have two sets of ten rep each, so 60 reps in total for each session, plus a one minute plank -ugh 😦

One way I keep my brain healthy: reading and writing. I know I’m good at these things because I’ve been doing them since I was about 3 or 4 years old.

So, in the face of sucking I look at what I’ve been able to achieve so far in my life and use that as a way to get through things when they seem hard. Recording everything I do is a great way to track my progress. Sometimes it feels like progress isn’t happening, but when everything is recorded, you can see that you’re getting somewhere and it means you’re less likely to give up, especially when stuff is new and you feel like you suck because new things are nearly always HARD, and just because something is hard doesn’t mean it’s going to be hard forever.

Sucking is finite: Unleash your inner mongrel

How much will I suck in 2020?

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2019 wasn’t bad. It wasn’t all easy though. Some shit went sideways and I said goodbye to a few relationships and also some beliefs that I’d been hanging onto for too long. I also extricated myself from a toxic workplace. None of this was easy because it’s hard to see people for what they really are. I don’t want to believe that people are intentional arseholes, but the truth is that sometimes they just are, and contrary to what said arseholes probably think, that’s not actually my fault. It would have been easy to blame myself and say that I should have done this, I should have done that, I should have learned how to breath underwater, defy gravity, turn water into wine, tame dragons, control the weather, and I should have kept my mouth shut about the shady shit that was going on, but I didn’t because it’s not right to do bad shit to people and it’s not right to accept that from anyone, be it your boss, your brother, your neighbour, your best mate or a government department.  If I kept accepting that kind of treatment then I’m just as crappy a person as the ones who are treating me like shit because I’m teaching them that I deserve that kind of treatment. I’m also teaching them that they can treat other people the same way, and that’s not OK with me.

I did some pretty amazing stuff in 2019: I hiked 450 km on my own to Brisbane and got to meet some really cool people, and I raised over $6000 for brain injury while doing it. I read close to 100 books, exercised for 377 hours, ran more than 180 km, learnt some wicked skipping drills, went to some great gigs, grew out of my clothes because I built new muscle, got my first reading glasses, survived a bushfire, and made some freakin’ awesome plans for 2020.

In 2020 I’m going to see how much I can learn. Can a skill in one sphere emerge in another sphere, giving rise to an ability where none previously existed? Basically, will a lifestyle of breadth, rather than depth facilitate emergent abilities? I believe it will. It’s going to be tricky to measure this, but I’ll do my best. I’ll be recording everything I do and putting it on YouTube so everyone can see how much I suck when I first start out, and how that’s actually OK, because everyone sucks to begin with!

Watch me as I suck at these things:

  • playing video games*
  • knife throwing
  • tap dancing
  • learning a new language
  • skateboarding*
  • graffiti
  • juggling*
  • rubix cube*
  • macrame
  • physics
  • wood carving
  • singing*
  • kiteboarding
  • navigation*
  • chess
  • playing the banjo*

* These things I’ve tried at least once before, but was never any good at and/or it’s been over twenty years since I’ve done them.

Here’s what I’ve been doing in the last couple of days:

Snorkelling around the snags in the river. It’s a hard life.

Kayaking up the river and down a creek. This is where I suck. I made this ridiculously stupid and hilarious documentary about the Burrum River on a GoPro, but can’t get the damn thing to transfer to the computer so I can upload it to YouTube. Waaaahhhh!

See, it’s ok to suck, because that’s what pretty much everyone does the first time they try something, and this was the first time I’ve used the GoPro.

Learn by way of failure

Because

No one ever started off being an expert

 

 

 

Brain Injury Hike Last Lap

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Fundraising and Awareness Hike: 450km total

22nd of October to 25th of October 2019

The cool guy I’m married to dropped me off in Dayboro, which meant I skipped the long walk from D’Aguilar to Dayboro. That suited me because I was a bit worried about the road into Dayboro. I had decided to get there by a back road and I wasn’t one hundred percent certain that the map I had would be accurate when I actually got out in the middle of nowhere. I had to make up the lost kilometres and I did this by going on a walk when I got home that afternoon and by walking around in Brisbane when I came back for a function after the walk had ended.

As I was about to start walking in Dayboro, a nice lady came up and wanted to give me a donation, but had to go to the IGA to get cash out. As we waited for her I spotted a group of people on the footpath with a little stand. “I think it’s Jehovah’s Witnesses,” I said to the cool guy. After the nice lady had given me the donation I said goodbye to the cool guy and started walking. I wanted to see what the JWs would say to me when I walked past. They said nothing! They just stared at me. I was disappointed. I wanted to have a lovely chat with them about my existential beliefs. Oh well, too bad for them.

I only got about 100 metres down the road before I stopped chatting to three guys having a coffee: Rick, Gavin and Farmer Jim. I ended up sitting down with them and getting a coffee myself. The cool guy drove past and beeped. I waved at him and Rick said, “Do you know that fella?” “Yeah, he’s my husband,” I said. The cool guy told me later that he’d already driven past the cafe once and Rick had waved at him, so it probably looked a bit weird that he was driving past AGAIN and beeping this time. I sat with them for ages and had a really good chat about lots of stuff. I really wish I could just wander up to random people in non-hiking life and start talking to them as though we’d always been friends just like I did with the three dudes in Dayboro.

At the top of the hill I couldn’t remember if I was meant to turn left or right, so I called into the cop shop to ask which way to go. The copper was an older guy, but man-oh-man did he look good in that uniform! [It’s a pity about this. If I saw this guy again now, I’d not think the same thing. I had some very negative experiences with the Qld Police Force in the recent State of Emergency in my town and it has changed the way I see them].

The road to Mount Samford was really good. A beautiful lady stopped in a ute and I talked to her for ages. Her name was Sonya and she was the CMC for Pine Rivers. She gave me a huge pile of coins from her car ashtray, which I tried to deposit later at Samford, only to be told that the post office isn’t allowed to accept coins. Funny, I’d deposited about $100 more coins in Glasshouse without a problem. I wonder what she would have done if I wanted to pay for something with coins.

It didn’t take that long to get to the campsite. I set everything up and went and had a look in the bush. I thought that this might be the spot that I find a dead body. It wasn’t. I’ve been looking for one since I was a kid. I don’t want to find a gross, rotten, maggoty thing, but probably a skeleton or one that’s almost a skeleton. I was going on and on about his one day on a field trip bus at uni and the dude in front of me said that he’d actually found a dead body in a cave once. It wasn’t fair, why is he so lucky, I thought. Sounds twisted, right? That’s because it is and I’m OK with that.

The bush around the campsite was pretty cool. I found a washout with steps cut into the side of it, so I climbed up and followed a winding track. At the top of a hill there was an old blue tarp tepee. Further along there was another structure that had fallen down. It was probably a tepe once too.

I was so hungry that I ended up eating my dinner at 4.30pm. I packed everything up, so the only thing visible at the campsite was my tent. I was secure in the idea that no one would come along, but I was wrong. I was so glad I’d packed all my crap up because a lady came running down the hill with her staffy. I quickly darted behind the tent because all of a sudden it seemed really important that nobody see me. I thought that would be it; she’d turn around an just run away, but no; she kept running down, turning around and doing the same thing over and over again. I was pretty sure she hadn’t seen me, but then for her last lap she got another dog from somewhere and it tried to run over to where I was, so she then saw my camp. I was really annoyed! I hate the idea that people know where I’m camping, especially when it’s in the middle of nowhere like this was. At least she didn’t see me, so she had no way to know that I was a lone female and I know from experience that she would have assumed I was a man. Not that she would be a threat to me necessarily, but if she had a big mouth and went telling people that she’d seen me down there, then that could be a problem. Everything was fine though.

Campsite at Mount Samson

The next day I walked to Samford. The road had a lot of treasures on it. There were lots of number plates, but most of them were twisted and broken, so I didn’t pick them up. I also found half a cloven hoof, a colourful fingernail, a five cent piece, then a tent cent piece and a parcel that must have fallen off a delivery truck. I was hopeful I could deliver it, but the numbers were going the wrong way, so I rang the phone number on the delivery docket and told the guy that I’d leave it under the Welcome to Samford sign. He came along a bit later and said thankyou. He talked a lot about the building that the thing I found was for and how it was a drama to build it because of the huge roof angle.

I got quite a few donations off the road on my way to Samford, actually it was probably the most generous road that I walked along on the entire hike.

Myles from Mt Mee stopped and said hi. It felt really good to see him again for some reason, like he was an old friend or something. Another man stopped to ask what I was doing. He was interested because he and his husband were carers for disabled people and they were on the way to a picnic they’d organised for some of the people they cared for. He later gave me a donation via the PA fundraising platform. A bit further along a man pulled up in a ute ahead of me. He got out and started walking in my direction saying, “I’ve got a donation: $100.” He looked so much like Samuel Johnson (who I’ve always really liked) that I thought it was actually him – it wasn’t – but he was still a nice guy. His name was Aaron and he told me that he had a brain injury from an aneurysm. He said he was just sitting on the couch watching TV and all of a sudden it felt like someone hit him over the head with a baseball bat.

I really wanted to get a sars when I arrived in Samford, but I couldn’t find any. I walked past some people having lunch at a cafe and asked them about sars and if they knew where I might find some. They couldn’t help me, but I ended up sitting down and talking to them for a while. They were on holidays from America and Canada. Once again, it would be great if I could push forward with the idea that I can just wander up to random people and start chatting to them while they’re having a meal or a coffee in non-hiking life. After I left them I went over to the Injinji shop to see what their stuff was like. I really should have come back to Samford and bought my trailrunning shoes here, rather than Athletes Foot. The Saucony shoes I bought cost me $220 and a big hole ripped in the upper in the first twenty minutes of my using them. I’ve had to sew them up myself because the store and Saucony said I misused them. Aaaaaaarrrrrrghhhhhh. OK, whatever…now moving on (hopefully).

I went to meet the lady I had arranged to stay with; my friend Tiiu. I’d met Tiiu previously when I’d come through Samford asking about places to camp. She was volunteering at the tourist information centre that day, so it was great that our paths crossed. She had a brain injury too and I felt very strongly that we had forged a meaningful connection when we first met.

I left my pack with Tiiu, and armed with directions for the supermarket, headed off in search of sars. When I got there I got into a good discussion with a lady in her seventies who had been protesting against the Adani mine. She was wearing a Stop Adani t-shirt. Peter Garrett wore one of these (amongst others) when I saw Midnight Oil in concert a while back. The Stop Adani lady and I talked about activism and I told her how I’ve never really been a frontline activist for the environment, even though I’ve always cared very much about environmental issues (afterall, I have an environmental science degree). I see my role in activism as providing a lived example of how to become liberated from fear and apathy, which I believe hold us back from living meaningful lives and also hold us back as a society from achieving both the small and large goals that will allow us to overcome the big problems that we are now facing and will continue to face into the future.

After the D&M I got the sars: YAY!! and headed back to Tiiu at the tourist information centre, so we could go to her house in a neighbouring suburb. I had no idea where I was in terms of geography, so it was good to have her driving me around.

I had a great time at Tiiu’s place. Her two kids, Toby and Ava were really cool. Ava gave up her bed for me and Toby kept me on my toes with hilarious puns all night. He came in from the bus, walked straight to the fridge, got an egg out, and holding it aloft, said, “I hope its going to be “eggseptional evening.” It was total crack up. (get it).

The next day Tiiu decided to walk with me. We had to head back into Samford to start from there again:

Me organising my crap and looking at the map in Samford. Photo: Tiiu

Tiiu and I ready to go in front of the tourist information centre. Photo: some random person.

I had a great time walking with Tiiu. I felt like I’d been best friends with her my whole life. At one point we even said the same thing at exactly the same time. We “got” each other in a way that only comes from shared adversity. Tiiu stopped walking at a shopping centre to catch a bus back to Samford and I continued on to The Gap.

I’d originally planned to catch a bus some of the way into The Gap because I wasn’t happy about the narrow shoulder on the big hill. After walking up Mt Mee I felt like I should just do it because I knew that nothing could beat the Mt Mee road for harem-scarem.

At The Gap I walked past a group of school children being led along by their teachers. I smiled at the teachers and did small waves to the children. The teachers looked at and looked away again as quickly as they could. The kids did the same, but I could tell it was hard for them not stare at me. At the end of the long line of kids I said hello and smiled to the person I thought was probably a teacher’s aide, but she totally ignored me and looked straight ahead as though she had no idea I even existed. Nice.

I’d arranged to stay with a lady (Deanne) I’d never met through one of my neighbours. She’d told me to meet her at Coles, but I had no idea where it was, so at the servo I asked a lady fueling up if she knew. She said she’d just take me straight to Deanne’s house, which was really nice of her.

That night we all went out for dinner because I’d arranged another Facebook event at The Gap Tavern, which no one came to aside from a lady whom my friend Shanny sent along. Still, it was a good night and I ate lots of food, which was very kindly bought for me by Deanne and her husband, Simon. As I was leaving the table to go to the bathroom, I heard someone say, “I couldn’t even eat that much!” I was so totally sick of damn muesli bars by this stage. It was good to eat real food again and I felt it necessary to eat as much as physically possible while it was available!

The next day as I was walking, I felt like the biggest weirdo of all time because everyone kept looking at me like I was a freak. Some young women, all of whom we wearing too much makeup laughed at me as I passed by and said hello.

I got a good laugh at one point though. I’m still getting mileage out of it. I walked past a school and the bell hadn’t gone yet, so all the kids were playing on the oval. One little boy (about seven or eight) was running along the fence with his friends and his hat had his name on it: Cooper Jones. He ran right up to the fence where I was walking and I said, “hello, Cooper,” and just kept walking. It freaked him right out! It was awesome!

Down the road a bit, a nice man stopped mid-jog and gave me a donation and even further down the road a lovely elderly man gave me a rather large donation because he was utterly gobsmacked by what I was doing. He kept patting me on the shoulder and telling me that he just couldn’t believe it. It kind of felt like he was patting me that way because he was testing to see if I was actually real and not just an apparition.

Next, a nice lady called Felicity stopped her car to come and talk to me about her son, Hayden, who’d been brain injured and how hard things had gotten for them since. She’d actually done several u-turns to get to where I was. I gave her a card so she could donate online later.

As I closed in on the city it fell on me that the whole thing was almost over:

At the CBD I wanted to tell everyone how great I was, and even though the city was full of people, I didn’t think I could. I got some tourists to take this photo of me:

I wandered around in the Queen Street Mall for a fair while because I had to meet the STEPS Coordinator, Sue at 1pm so we could go and see the Minister of Health: the Hon. Dr Seven Miles. I had “brunch” at a fancy cafe, which was right next to the Tattersalls Club and talked to a really nice older man there about hiking. He’d never been hiking before and wanted to start. It was nice to have someone so interested in the hiking part of what I was doing. He asked me to demonstrate how to take the pack off and put it back on again. I got him to lift it up and he was a bit scared about how heavy it was. “If you’re hiking with other people, your pack doesn’t need to have absolutley everything in it because you can share the load. Plus, I’ve walked 450km, so I needed a lot of stuff for such a distance,” I said, and he nodded, but I could still see he was a bit worried. “Don’t even worry about it. Once the pack is on your back and you’ve started moving, you really don’t even know it’s there,” I said. It’s hard to believe this, but it’s actually true.

I went back out into the mall and a random person shoved $5 at me and kept walking. I didn’t even get to see their face! It was really funny. At the Pen Shoppe I got talking to the ladies working there and they gave me a donation too. I’ve always loved that shop. I have a bit of a weird obsession with pens (I have a small chest of three drawers that is FULL of pens and it’s so hard to not keep buying more). I have it with paper too, but I’ve had to set that one aside because it’s very hard to find nice writing paper these days.

Finally it was time to meet Sue and we walked over to the Minister’s office to see him. Sue said he wanted to come on a walk with me. We waited for him with his sidekick, Riley, out the front. A fit looking man about my age strode up wearing a Deadly Choices shirt, shorts and a pair of runners. “You’re not what I was expecting,” I said and he laughed. I really thought he’d be a fat old guy in a suit. I really liked him and we talked about heaps of everyday stuff on a fast walk over the bridge. I felt a bit sorry for Sue and Riley as I knew it was probably a bit hard for them to keep up. When we arrived, two people from the PA Research Foundation were waiting to meet us: Damien (CEO) and Meredith (Marketing Coordinator). Everyone from the PA was really happy to have the opportunity to speak to the minister because it’s not something they would normally be able to do.

The Health Minister and me on our walk across the bridge. He ran back to the office after this.

Damien very kindly bought me a thickshake after the minister had left and we sat around a bit until it was time to leave. Sue dropped me back at the Roma Street station with another bag of corn chips. I had to catch the train back to Bundaberg. As I travelled I saw places I’d been on the hike and it made me nostalgic for what had just been.

I wish it could always be like the hike; the feeling that I’m doing something at least a little bit worthwhile. I wonder if the people I saw, smiled at and spoke to will remember me. I wonder what it might be like to have perfect recall and what my brain is like now. Is smarter than it was before part of it was cut out; both less and more at the same time? Less because some of it is missing, more because of the connections that have grown in through all that I’ve done since becoming brain injured. I long to see myself objectively, but I know this is impossible. I want to know how it is that I appear to others; in my actions, my words, my mannerisms and my pursuits. How am I perceived?

As the train pulled in at Bundaberg I thought I caught a glimpse of the person who was picking me up, there he is! I thought and I smiled, but when I got out of the train, it wasn’t him because the platform was empty. He’s forgotten to pick me up, I thought, disappointed, and it felt like someone had pulled the plug out of sink filled with happiness water. All the water drained right out when I saw that he was actually sitting in the car out in the carpark. He didn’t even ask if I wanted help with my stuff. I was never more sad that the cool guy I’m married to wasn’t there to share in what should have been an awesome moment to end a significant achievement. I really wanted the whole thing to end on a good note, but it didn’t and that’s not something I really had any control over, unlike the hiking itself, which I was totally in charge of.

 This song with its simple lyrics has had a big impact on me. It’s about my life (and your life too) and also about the hike:

 

THE END

 

 

Brain Injury Hike Caboolture to D’Aguilar National Park 47.5km

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Fundraising and Awareness Hike: 450km total

16th of October to 21st of October 2019

I’d arranged with the STEPS coordinator Sue to pick me up from the showgrounds at Caboolture so I could go to the Chermside STEPS group. I always worry about recognising someone if they’re coming to meet me, but I kept telling myself that she would recognise me and that everything would be fine. See, I have prosopagnosia from my brain injury, which affects my ability to recognise people, even if I know them very well. Often pieces fall into place once I’ve had a chance to interact with a person, but not always. Sometimes the only approach I have is to say, “Have I met you before? I have facial blindness and sometimes I can’t recognise people.”

If you can, just for a moment, imagine what this is really like in the context of social situations. It makes even brief encounters stressful and I come away from a lot of interactions feeling stupid and self-conscious. Did they get what I meant about facial blindness or did they just think I was being an idiot? 

As I was waiting for Sue I watched some roadworks that were going on right in front of me. It was so interesting to watch up close. This machine came along and sliced off the edge of the road. It “sucked” it up and shot the chunks into the back of a moving truck. The whole thing had to be tightly controlled by a man on the ground indicating with hand movements if the truck should stop, move forward, speed up or slow down. After the road slicer had done his bit, a bob cat operator came in and cleaned up the scraps left behind. This is my calling, I thought as I watched it unfolding in front of me. I gave the dude on the road slicer thumbs up and he did the same in return. It was really hard not to ask the site supervisor if I could touch his long plaited beard as he explained to me what each piece of machinery did.

Sue brought me Doritos. She’d gone to the trouble of searching  through my website to find out what food I fantasised about while hiking! How cool is that.

The STEPS meeting was a bit difficult, but also really good. I met a lot of nice people, many of them in their twenties who had been struck down with brain injuries from various causes. One of them in particular had a big impact on me and for the rest of the hike I couldn’t stop thinking about her and her family. In fact, I will never forget her.

A lovely lady gave me a big donation and told me that she’d come along especially to see me. She looked like the actress Laura Linney and her daughter’s hairstyle made me think of Maggie Fitzgerald in Million Dollar Baby, one of my favourite movies.

The meeting was difficult because it’s hard to hear about how people came to be brain injured and the obstacles they’re still enduring as a result of that. Some people have made partial recoveries, but others won’t and it made me sad, angry and impatient for a world where people who aren’t brain injured could be imbued magically with understanding. If only people who aren’t brain injured could come to these meetings and see what it’s like for all of us living with this shit, I thought as I recalled what it was like to be all of a sudden treated as though I was dangerous, reckless and stupid by people who had previously respected me, trusted my judgement and valued my work before they found out I was brain injured.

That night I’d arranged to stay with my friend, Yvonne in Morayfied. I’d met Yvonne at the RBH in 2005. Her husband, Mick was in the same ward as me and had the same kind of brain tumour I did. Unfortunatley Mick passed away some years ago. Yvonne and I stayed in touch, but it had been a long time since I’d seen her. It was good to catch up with her and her granddaughter, Zoe, who had come to live with Yvonne, kindly gave up her bedroom so that I could have a “real” bed to sleep in.

The next day I went to another STEPS meeting with Sue. This time at Northlakes where I met more nice people. I felt that my experience of trying to get work and sustain employment once I attained it very strongly mirrored the experience of one of the ladies in the group and I spent a fair bit of time talking to her about what that was like. I’ve always felt like a bit of loser not being able to get a job after I struggled through a degree. I wasn’t happy that she’d had the same experience, but it was still good to learn that I wasn’t alone.

I got to thinking about my own brain injury and how it can’t possibly be called mild. Just because I don’t have a compromised gait or slurred speech doesn’t mean my brain injury isn’t severe. I mean, some of my brain got cut out for crying out loud, a big chunk in fact, and my entire brain was swollen for a long time (weeks and weeks). I even went temporarily blind from the intracranial pressure. Then there was the chemotherapy and radiation. All of it happened over an extended period, not just in an isolated event. When I hear other people talking about their brain injuries and the services they’ve been able to access it makes me  really pissed off that I never got to access any of those things and can’t access any of them because how would I? I look normal, I sound normal and I’ve got no way to prove that there’s anything wrong with me, besides the big scar on my head and my MRI pictures, but even then, it’s hard to make people understand because they just don’t get it, even professionals.

Sue dropped me back off at Caboolture to start walking again after the meeting. She took this photo at the trail head of the Caboolture to Wamuran Rail Trail.

The walk along the rail trail was pretty good, but it was so farking hot. I drank nearly all the water in both my bottles. It probably didn’t help that I was scarfing down salty Dorito chips at every opportunity I got.

At one spot in the middle of nowhere I saw this guy just sitting there on the side of the trail. He looked a bit weird and he was staring right at me, so I said hello to him. He started to get up and was trying to talk to me, but I said, “sorry, I’ve got to keep going.” I really didn’t, but he kind of freaked me out a bit.

I did worry about going the wrong way because the trail had no signs and I had to cross over a road and go through what looked like someone’s front yard. I could see a pink flagging tape fluttering around across the paddock, so I thought that could be where I was meant to go. It seemed like it, but I couldn’t be totally sure because just like the trail before it, there were no signs after it. I felt a bit better when I saw this garden at the back of a big sawmill. I thought it was pretty cool that people would do this at their workplace:

On the other side of the blue thing was a whole section of pumpkins. The space between the front of the garden beds and the top of the trail was full of seedlings. The garden beds are old truck tyres.

I’d gotten permission to stay on the patch of ground between the hall and the Wamuran Men’s Shed. People had been texting me telling me to watch out for a storm that was brewing, so I thought I’d wait a bit to set up my tent. I also didn’t want people to see what I was doing and there were people in the hall having a meeting. I thought I might have to camp on the hall verandah if the storm got really bad. There were a couple of thunder claps and some rain, but it came to nothing really.

I camped at the back of the hall in the end, but I waited until dark to put my tent up. The next morning as I was packing up I could see some feet marching in my direction. I knew they belonged to someone who was coming to see what I was doing because there was no other reason to come down to where I was camped. Here we go, I thought. It was lucky that I’d recorded the names of the men I’d spoken to from the men’s shed when I was asking about camping there because old mate was not impressed that I’d camped there overnight. He didn’t turn out to be all bad though because he went and told the lady in the coffee van out the front that I was there and she brought me a free coffee, which was really nice. I had to tip it out after she’d gone because it had milk in it and I couldn’t drink it. I didn’t tell her that though.

Wamuran campsite at back of the hall.

As I was leaving I went to the coffee van to say hi. Some ladies were getting coffee before going to Yoga and they were really interested in what I was doing. One of them gave me a donation and the coffee van owner (Tanya) gave me her phone number in case I needed help along the road. I was planning on walking along the unfinished rail trail to D’Aguilar, but the yoga ladies said it would be easy to get lost, so I just stuck to the highway.

This was the worst bridge I encountered on the entire hike. I ran across this one because the road was really busy with trucks coming from both directions. There was only a very narrow shoulder on one side of the bridge because the other side had barriers taking up the shoulder. I made it across just as two trucks came thundering along in opposite directions.

I thought it would take around 3 – 4 hours to walk the distance to D’Aguilar, but I did it in just over 2 hours. It sounds ridiculous, but it seemed too easy. I was worried the pub would forget that they’d said I could stay there for free, so I scoped out potential campsites as I got closer to town. When I arrived the manager did remember me and she let me go to my room even though it was too early for check-in. I had a shower and tried to go to sleep, but I was too lazy to get up and turn the air conditioning off, which meant I was too cold to sleep. I don’t know why I do this kind of thing. I’m sure other people do it too. It’s like needing to pee in the middle of the night; I always lay there pretending that the need to pee will just magically disappear, but of course that never happens and I waste three hours of sleeping time trying to ignore the need to go. In the end I get up and stomp to the toilet as though my body has manufactured a full bladder just to annoy me.

D’Aguilar Pub. I had a great time here.

My room at the pub. It was really awesome!

I met some locals at the pub. They were all hilarious, especially Goomba:

Me and Goomba (not sure how he earned that nickname.). He seemed to be the local larrikin. He kept asking everyone in the bar to give me donations and I got around $200 through him pestering everyone about it. I had a really awesome time, except for when Goomba went and kindly got me a coffee after I told him I didn’t drink alcohol. The coffee was the worst kind for me: a latte. Ugh! I couldn’t tip this one out, so I had to force my way through it without pulling faces about how disgusting it was. It was hard, but I made it to the end of the seemingly bottomless mug. The pub was really pumping and was full of people. I wish the pub at Woodgate could be more like that!

This was another local. I can’t recall exactly his name, but it went something like this: Sir Edward Smithsonian Belladonna Moore. His t-shirt really sums the whole thing up:

Everyone I ended up sitting with seemed to be pretty drunk and it made me so glad that I don’t drink.I made up a bullshit story at the pub about how I’m not allowed to drink for medical reasons due to my brain injury. This story stops people from asking why I don’t drink and trying to convince me to drink with them when they invariably don’t understand my reasons for not drinking whenever I elaborate.

I left at 8.30pm. I was worried about the next day and Mt Mee. It had been on my mind since I first started the hike.

In the morning as I was getting ready to go, I got called a man again. There were two hotel employees sitting at a table near my room and one of them said to the other, “there’s that guy doing the walk along the road.” I looked around and the other one said, “that’s a chic!” I asked the first one why he thought I was a man, but like the dude in Glasshouse he was really embarrassed. I told him I wasn’t offended, just interested in what made him think I was a man. He was kind of squirming with embarrassment, but he eventually said, “Well, you’ve got short hair and you just don’t expect a woman to be doing something like what you’re doing. Sorry, luv, sorry.”

Like I said earlier though, it can’t be because of the pack. I’ve been called a man when I’m not hiking. Just the other night, at a dinner party, a drunk moron told me that I looked like a lavatory door. “You know, you’ve got no womanly shape. Your hair is too short. You should flirt more.” What the actual fuck? He told me in the end that I looked like an alien, to which I quipped without skipping a beat, “I won’t bother telling you what you look like.” What I really wanted to say was, you look like a fuckhead. I didn’t say that though because I was at someone else’s house and he was their friend. Emphasis on the their in that sentence.

The walk to Mt Mee wasn’t too bad in the end. I was worried about the windiness of the road, not the steep climb:

This sign made me smile:

I found I really enjoyed walking up the mountain. The harder it should have been (but wasn’t), the more I felt invincible. I even started laughing a couple of times because I simply felt like the most amazing person who had ever existed. This feeling must have something to do with the VO2 max.

The view was pretty good walking up the mountain:

The rain chased me the whole way. I just made it to the lookout and under a tiny shelter shed before it started pouring. Eventually it stopped and I made it to where I’d planned to camp that night. I collected my food cache that I’d hidden weeks beforehand and went over to the cafe/restaurant to have a coffee. I sat there for ages and then it started storming, so I went and got another drink. “I thought I’d get another coffee if it’s going to storm,” I said smiling. It wasn’t busy (I was the only one in the place), so I didn’t think they’d mind if I hung around a bit. They knew what I was a charity walker because I’d told them ages ago that I’d be coming through when I was mapping the hike (plus,I had my pack with me while I was there [obviously] and it has a big sign on it). “We do close at 4pm,” said the lady behind the counter.

Just before 4pm I went up to pay for my coffee. I thought that they’d offer for me to stay seeing it was still storming. Maybe they’ll just let me sit on the little verandah. No, they didn’t and I had to leave. They did give me one coffee for free, which is something I guess. I really wanted to tell someone how great I was for walking up the mountain in under 3 hours, but I didn’t because no one asked how the hike was going and I suppose I got a bit disappointed about that. It’s hard to remember that just because I care about something, it doesn’t mean other people care about it too.

I decided I didn’t want to camp behind the church. After I had to leave the restaurant I felt that the restaurant people weren’t particularly friendly and they would have been able to see that I’d gone behind the church and because I hadn’t been able to ask for permission to camp there, I didn’t want to get in trouble for it, so I went looking for somewhere else. I ended up camping underneath the hall. I’d tried to contact the people in charge of it previously, but no one got back to me about it. I was worried about getting into trouble, so I tucked my tent out of view and waited until after dark to set it up:

It was impossible to sleep here because of the possum olympics. Several competing teams of possums ran riot all night long. There were crashing sounds in the gardens and I imagined that a rogue possum was throwing his counterparts from the balcony into the foliage. The peacock was the referee, who policed proceedings with a stupid honk that went on all night long. Peacocks aren’t nocturnal! Why was he up all night? I really could have strangled all of them. I also got really cold, which didn’t help matters. I guess you might have said that I had the shits!

This was one of the reasons:

I kind of felt like Mt Mee didn’t like me. I had to go over to the school to get water out of the bubblers, which wasn’t easy. I wasn’t expecting that. I’ve never seen taps padlocked before.

The next morning a lady came while I was packing up. I’d put my tent away really early so I couldn’t get into trouble for camping. I told her that I was just reconfiguring my pack and I asked her if she was going to get up me for camping there. When she said no, I told her what I was really doing. She started talking about how dangerous the world is. “When I go into a shopping centre carpark I always make sure there’s more than one or two other people there so I don’t get mugged. It’s happening all the time,” she said. I asked her where she saw it happening. Her answer of course was, on the news. “How many times have you seen on the news about how someone made a successful journey through a shopping centre carpark? The world is not a dangerous place. No one likes to hear this, but it’s actually true. We see violence on the news, hear it on the radio and it’s fed to us non stop online. People talk about it on social media and keep bringing it up over and over again. This causes us to believe that the world is something it’s not. Did you know that the most dangerous place for a woman is in her own home with a man she knows?” She didn’t really have a response for anything of these things, but I did get the feeling that she actually heard what I was saying, which was promising. It’s challenging for people to meet someone who says stuff that totally conflicts with their view of reality and is a living example of the conflict.

That night I was meant to be camping, but the cool guy I’m married to wanted to come and pick me up because he’d been called away for work in PNG. If I didn’t take the opportunity to see him then I wouldn’t have been able to see him until well into December. We arranged to meet at D’Aguilar National Park, which wasn’t far from where I’d camped, so I got walking. He was going to drop me back the next day.

Down the road I started talking to some nice people who were embarrassed about the stench of the fertiliser they were spreading in the garden. I told them I’d camped at the hall. The lady said, “that’s ok, I’m on the committee.” I wish I had known that, then I could have just come to see her when I was planning the hike. They had a beautiful view from their house.

A bit further down the road I met Myles and Holly who stopped to give me a donation. They had dogs with them: two staffies called Mash and Teabag. I wanted to pat them because I really missed my own dogs and hadn’t been able to stop thinking about Biggie’s fluffy tail that sticks almost straight up. He’s our red cattle dog. I got whinging to Myles about the Metallica concert being cancelled on the 29th of October. Holly was wearing a Pennywise jumper and it reminded me of the original reason behind my idea for walking to Brisbane: going to the Metallica concert. I really liked both Holly and Myles. I saw Myles again a few days later on the road outside Samford. It was really nice to see him again, but Holly was at work this time.

Biggie and the tail

It was a hard walk up to the national park. It was because I was so damn tired from the possum olympics. The view was really amazing though. There was a house that had a view that never ended. “You’d never get tired of looking at that,” I said to no one in particular. I saw this cool truck at one spot:

I took this photo as I got into the national park. I had to run to retrieve the camera because as soon as I set the timer two motorbikes started coming down the track and would have run right over it:

I stayed awake for the 3.5 hour trip home, but as soon as we arrived I laid down and went straight to sleep for an hour. That night I went to sleep immediately and didn’t wake up at all until the morning. It would’ve been one of the best sleeps I’ve ever had.