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.

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

 

Hervey Bay Section

I’m hiking from my home in Woodgate to the Brisbane CBD soon (map coming soon). I wanted to do it anyway, so I thought it would be a good opportunity to raise awareness and hopefully some funds for something that’s really close to my heart (or head, if you will): brain injury.

Around 700 000 Australians are living with brain injury (Brain Injury Australia, 2018) and I’m one of them. It’s likely that many people would look at me and think, there’s nothing even wrong with her, which I guess could be right because the impact of being brain injured is pretty difficult to measure, especially in the eyes of those who have no idea what it’s like to claw your way back after losing almost everything. Some people have even sought to use this against me to serve their own purposes. Sounds awful, right? Yeah, it is, but it’s caused me to come at this whole brain injury thing anew and that’s really why I’m doing this hike. I wanted to show these particular people that you can’t keep me down and that what they did was wrong in the worst kind of way because , what they did demonstrates a broader attitude to disability; an attitude that is just not on.

This is the route I will take on the hike, which begins on the 20th of September 2019. There are four basic legs:

1st leg Walkers Point (Woodgate) to Hook Point (Fraser Island) = 138km

2nd leg Inskip Point (Rainbow Beach) to Brahminy (Cooloola) = 98km

3rd leg Tewantin – Caloundra = 60km

4th leg Landsborough – Brisbane CBD = 150km

(distances are approximates taken from Google Earth Google Maps, therefore, not particularly accurate)

The whole thing will take 33 total days and I will be walking for 27 of those days.

Anyway, the whole point of this post was really to write about Old Mate.

I called into a local establishment in Hervey Bay to ask if they had rooms at their venue. The answer was no, which is fine, so I explained what I was up to. A blank look was the response I got, followed by more blank looks when I asked about a road at the bottom of the property. “It doesn’t got all the way through,” he re-iterated several times. I wasn’t sure that he totally got what I was asking and that he even knew what hiking was, so I said, “it doesn’t really matter about vehicle access because I’ll be hiking. What that means is  [insert simplistic description here],” met with yet another blank look, after which I decided that talking to this guy was a total waste of oxygen.

He went on to say that I’d need to contact the owner to ask his permission if I wanted to camp on the property. I wanted to leave, but I was conscious of not seeming rude. I also started to get curious as to if he might actually come ’round. Would something inside him click? Would he think to ask some questions? Would he eventually show some interest? No. It was obvious he thought I was a complete idiot.

me: what’s the owner’s name?

him: John

me: what’s his last name

him: Johnson

me; what’s his phone number?

him: I can’t give that out

me: but if I have to ask his permission, I’m going to need a way to contact him, so maybe you could give me the number of the establishment or the office and I could call him during work hours.

him: gives me number

me: thankyou (smiling on the outside, wanting to strangle him on the inside)

him: Ha, yeah, good luck (said with much derision while glaring at me because obviously I’m the biggest dickhead of all time)

I’d done another long distance charity hike in 2016 and couldn’t recall coming across anyone like this, so I started to worry that I’d imagined the wonderful and encouraging way I’d been received by pretty much everyone I approached for assistance back then. Maybe this hike won’t be like that one, I thought and I got a bit worried because I didn’t know how I’d face someone like this guy at every turn.

I needn’t have worried. The very next person I came across was a breath of fresh air, even if initially I thought she was going to get up me. I guess my meter was set on defensive-disappointment after old mate. Her name was Kim and she was working on road construction. I asked her about a patch of bushland near the site she was working on and if she thought I could camp there. She was so friendly and enthusiastic. She shook my hand  and offered me a campsite on her own property after I told her what I was doing. “That’s a great cause,” she said while shaking my hand again and smiling broadly. “And yes, I reckon you can camp here,” she said as she pointed at the vacant land while I looked at the colourful tattoos behind her right ear.

I hope most people I come across will be like Kim. This is what pretty much everyone was like on my last long distance hike.  Even in non-hiking life the world could use more people like Kim.

I’ll be mapping the Landsborough to Brisbane leg of the hike next week. I hope it’s not too hard to pin it down. I’m not familiar with that area, so I have no idea what to expect, plus I’ll be on my way to the Byron Bay Writers Festival, so I won’t have too long to spend faffing around trying to work things out. Fingers crossed it goes ok!

Wake Adventure Sleep Repeat