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Julia Robertson: Life 2.0

This blog was first published on The Dignity Project for Brain Injury Awareness Week 2021I was invited to write this blog as I live with a brain injury. I have found it difficult to explain to other people what it was like in the early days, I still struggle to find the words. In 2014, a documentary came out called "My Beautiful Broken Brain". It is about Lotje Sodderland's journey into the complexity and vulnerability of her brain following a stroke. After she regained consciousness, she experienced a new existence of distorted reality where words had no meaning and her senses had completely changed. It is still the closest thing I have found to convey the experience to others.

Back to the beginning.

My first brain injury was sustained at the tender age of 5 years. I was too young to remember how things were before the injury, so I don't really know how it affected me in terms of cognition or function. I was hit by a car doing approximately 80ks an hour. Those who witnessed it said that I was thrown over the car rather than being pulled under it. Apart from my brain injury, I fractured my spine and lost all the skin on my back from my backside to the base of my neck. Ended my dancing career.

At 29 years of age, I was diagnosed with a brain tumour. Due to the location and level of risk associated with surgery, I was not able to find a neurosurgeon willing to remove it or even attempt a biopsy. The growth of the tumour and the intermittent blocking of the flow of fluid through my brain meant that one half of my brain had moved around. As this happened, my memory started to decline, I had seizures and became progressively more disabled until I was completely dependent on my husband. Eight (8) years later, at age 37, I was able to have the surgery interstate. I had a massive intraoperative haemorrhage and lost my memory.

A medical scan showing Julia's brain tumour

When I came home from interstate, my husband had to go back to work immediately, we had no support through the hospital system, because the states don't talk to each other. I had no sense of reality, a very short, short-term memory, big chunks of my long-term memory missing, left side weakness from the bleed, sensory changes, personality changes and more. Each day was filled with fear and discovery. I couldn’t tell if things had really happened, if I had imagined them, or if I was asleep. I didn’t say anything to anyone about this disjointedness – because I feared being put on medication, which might make my brain even cloudier than it already was. About a month post-op, my husband came with me to see my GP. It was at this point that I found out about the bleed. I had been told by the surgeon, nurses, and my poor long-suffering husband. I had zero recollection of being told at all. It was a shock and caused me to question my sense of reality even more. Every time I found out something was different to what I knew, it was like having the whole world pulled out from under my feet and being left drifting alone in an ocean of the pitchest black. I discovered the weakness on the left one morning when I tried to pick up my cup of coffee with my left hand. I couldn't lift it. I used my right hand, no problem. I put it down and tried the left again. Nothing. I could drag the cup across the table a bit, but that was all. I had double vision, but thought it was medication-related and didn't mention it until much later. I didn't know I had lost hearing until I was studying a course online, the lecturer could no longer stream video, only audio – and I couldn't understand what was being said.Before the tumour, Life 1.0, I had been a vocalist in a band, performed at festivals, wrote, and read music. I cannot sing anymore, not like I used to, I have dysphonia, my voice sometimes sounds like I have a bad cold and sometimes it vanishes completely. I cannot read or write music anymore. I have spent the last 10 years recovering from surgery and the damage the tumour caused and thriving in some cases.

It isn't all bad though. I have a much better understanding of what life can be like for other people living with a disability. I am more confident than I ever remember being in Life 1.0. I do my best to find ways around the things I cannot do or struggle with. I use routine, alarms, a shared (with my husband) electronic calendar, and reminders to help with my memory problems. I had to relearn how to learn, which launched me back into study, which has helped me to improve my short-term memory and consciously make memories.

My long-term memory has some patches filled in with stories other people have told me about my past. I must trust what they tell me is true – because I have no way to check, no basis for comparison. I remember and can recite a poem I learnt when I was 7 years old, but I have no memory of the first time I held any of our children. We have spent a fortune on physiotherapy, but it is worth it to be able to hold my new granddaughter without hesitation or fear that I will drop her.

I still have seizures. They often leave me weaker on the left for a few days. The seizures impact my cognition and memory for up to a week. They leave me with the fear that I might have one while I am holding my granddaughter. However, I cannot and will not allow my life to be ruled by fear. I still hold her, but I am careful about where I am, when I do it, and make sure I am in the line of sight of anyone who might be able to take her from me if that should happen. I try to be aware of the possibilities – but not afraid.

Dignity for me is about being treated with respect. I know what my limits are, and I try to work within them and push them a little further. If you tell me I cannot do something, I will do my best to show you I can, or at least will give it a decent shot.

My mother used to proudly tell everyone who would listen that my first full sentence was 'Do by self!', not much has changed. I am very attached to my independence such as it is. I struggle to ask for help and sometimes even to be able to identify when I might need help. I am a terrible patient and have received disapproving looks and lectures from my Doctor's, specialists and on at least one occasion, from paramedics.

During the pandemic, I have struggled with feelings of isolation due to my inability to hear during online conferences and meetings, if I cannot see the speaker and there is no captioning. I have emailed each and every one of those organisers and let them know that the content is not accessible and how they can fix it, providing suggestions as to different services they can use. Masks have also made it a lonely world out there. I have a note app on my phone that I typed up my coffee order on, a note for presenters at live conferences asking if it is okay to use my transcription app to record and 'read' their presentation. I have asked people in shops to lower their masks so I can lip read and I use my transcription app for medical appointments.

If I can find a way to adapt I will!

Categories: Living with brain injury, Life 2.0, Julia Robertson