Image Description: Person lying on their back in a room full of darkness, and unable to see anything forward.
Kashif and I met in Glasgow, Scotland through skateboarding. The day I met Kash we went back to my flat and watched skate videos all night with Paul VX and a couple of my friends from Aberdeen. From then onwards Kash and I would skate together in Glasgow all the time. It was almost three years later after I had moved back to Sydney that both Kash and I found ourselves falling through time after sustaining traumatic brain injuries. He in Scotland and I on the other side of the world. It wasn’t until recently that Kash and I started to speak about the never-ending process of putting the pieces back together.
The anxiety-ridden vulnerability that accompanies the inability to situate yourself in reference to events, time, places is overwhelming.
This is how we both found ourselves post-injury, trying to remember who we are, what we like, how we dress, the people we know, our own personal histories and identities.
The slate is wiped clean as you stumble around in the dark grasping at shards of light for clues. For landmarks of our own identities. Looking back and trying to make sense of that early frustration Is like grasping at a rolodex of intangible information. It is like trying to clutch and cradle smoke between one’s fingers. As I think about being in the midst of these fleeting thoughts I am reminded of Samuel Beckett’s work “Company”. The written piece begins,
“To one on his back in the dark. This he can tell by the pressure on his hind parts and by how the dark changes when he shuts his eyes and again when he opens them.”
The subject can only tell there is darkness because of the sensation of his eyes opening and closing. The subject does not know if the space around him is small or infinite. He does not know if the voice speaking to him is from within or without. But the thoughts, voices, sensations don’t stop trying to situate the self in reference to the environment that surrounds it. The subject tries to bring order to the sensory information given. One cannot simply confer significant meaning through a correlation of sound and image. Sound, sight, sensation, and movement are disjointed in Beckett’s work in order to illuminate the subject’s struggle to be present in an unknown space due to sensory deficits.
This is what falling through time and not knowing where you remind me of. A process of elimination to exhaust the possibilities. I found myself eliminating the possibilities with the only certainty being that I was on my back surrounded by four walls, hooked up to hospital equipment. What country was I in again? Was I in Scotland or Australia? What clues were there? What time was it? There was no clock and I didn’t have a watch, phone or computer, was it dark outside? The blind was pulled over the window? When had I had my last round of painkillers I thought it had been three hours but when I buzzed and asked it had only been ten minutes. Did this conversation try to deduce these questions happen with someone or was it just an inner dialogue echoing through the silence? I started strategising to make sense of a muddled jumble of information. This is never-ending, and sometimes I remember…
Someone, either a nurse or a doctor on the brain ward would come to my room with a clipboard and ask me “what day is it? what city are you in? what is the date? What is the year?”
I knew this was coming each day so I’d cheat. I’d study for it by writing notes on my phone. I couldn’t really use my hands because they were in casts so I’d get visitors to help me write up the answers for the next day. Then every hour I’d check my phone and study.
I’d still fail most days, but it was hard to tell if this was both from the brain injury and from being in a controlled environment where time washed over me. Inside the hospital room, there was no night and day, no Monday Tuesday, no January, February. Just the backdrop of distress that came along with falling through time and grasping for moments of lucidity.
I think it was by week six when I got the answers right. I got them wrong the next day. What do you remember Kash?
I can remember almost everything about the day right before I hit my head and right after. I found out later I had a seizure when it happened. I remember holding my head and throwing up. I was looking around confused and my friends looked very worried. The ambulance arrived very quickly. We were skating a spot under a bridge because it was raining. You have to climb over a fence and then go up a little path. When I saw the paramedic something inside me knew it was serious but I didn’t know why. I looked around picked up my camera bag and board then made my way down the path and over the fence and walked into the ambulance. I had never been in one before this. Alex rode in the ambulance with me and the paramedics were so nice to me, I was still confused and had no idea what had really happened. When I was in the hospital, they told me I had a brain injury and I might require surgery. When the nurses took me away to the ICU they kept asking me where I work so they could contact them because I wouldn’t be going back, I kept looking at my watch and saying its ok, I go back to work on Wednesday, its only Friday. Thinking about it now I can see they were trying to alert me of the seriousness of the situation but I still didn’t get it. The days kept changing on my watch and I still didn’t know what was going on.
As Kash found himself alone in the dark I too was there. Now I think, It’s confronting how time changes because memory is so cloudy In the initial stages of brain injury. I was so opposed to being told that my brain injury affected me in this way and that and that this would likely not change or could change slightly.
It became real when in the brain injury unit at Royal Rehab Ryde, where I was being educated on managing my disability, they got me to attend this social group. I was two and a half months post at this stage and starved for any human interaction outside of the visits from family and friends. For me, these were the only landmarks of time.
They told me I could get a coffee which I was excited about because the cafe was one floor up in the building I hadn’t been allowed to leave my room yet. The world around me had shrunk very quickly. I had gone from occupying one hospital room for two months to occupying another for 4 weeks. But all I had known at that time was these four walls and the people who appeared within them.
Coffee day came, two nurses came and used the hoist to lift me into my power chair. I drove my chair up to the small open cafe on the 2nd floor and we all sat around and the coffees came out. There were six of us and two staff members. I was the only person there under the age of 35. The coffee came, I drank mine with a straw as the environment sank in. The staff member started a dialogue, ‘So guys does anyone remember the news articles they were given?’. Shit! I realised we were supposed to try and remember news articles to talk about. Immediately one guy started talking about how he liked to watch the tennis while another lady looked around the room. Someone else started talking and someone else and there were three people talking over each other. All the voices overlapping like a sensory overload of confusion and distress. ‘Yes I like, did you see? What was that thing again? Hmmm, is this the right one? Well my favourite is….is that today or tomorrow?’
I felt extremely tired and looked down at my straw as the staff member intervened. ‘Come on guys remember what we spoke about last week about turn taking…’ Later I learned this was a symptom of brain injury which we were being tested on and re-educated as how to appropriately manage such a symptom. This was alongside mood regulation and obviously speaking. I attended speech therapy twice a week. For me, this was when the real seriousness of the situation kicked in. Did you ever see therapists or get spoken to about long term effects as the word ‘disability’ slides into the equation? What were you told Kash?
I was told I would have several problems in the future. Memory problems hit me the hardest and the quickest. I still can’t remember hitting my head, and I was told I may never be able to.
I was given information by a specialist from the Community Treatment Centre for Brain Injury when they came to my room to speak to me a couple of days before I was discharged. They told me not to read what was on the papers until my first appointment at the Treatment Centre. They said this so I would not add any extra stress on my brain and so I would not scare myself. They saw a stack of skateboarding books and magazines my friends had left for me and asked me about them, I was told I would not be doing any of that for a long time.
I was so fatigued that I couldn’t even think about it. I have used my camera for years to document all the things I am involved in. I always tried to keep all my videos and photos organised well by date. Looking back at what I had done, I knew it was me but it felt like it wasn’t me. I still can’t remember what I used to do before I hit my head, even though I have gotten back to doing a lot of what I was doing before it, I still can’t remember how I felt and how I dealt with my emotions. The whole time in the hospital was very confusing and a lot of it I still can’t remember clearly. I was on several drugs and kept going in and out of sleep. Having a good memory has always been an important part of my life. I strived to be educated and retain important information. I struggled to see how the brain injury had caused me so many problems at that time and then for months after.
More than ever now, I write things down almost every day on sticky notes and put them on my wall. At first, I thought I didn’t need to do that and I would get back to remembering things well but that didn’t happen. I was very hard on myself and I still am. Using memory aids felt like I was not as good as anybody else. As time has passed I realised that it is ridiculous to think like that.
I regularly saw a clinical psychologist and occupational therapist at the Treatment Centre. They did so much for my recovery and helped me regain my confidence. They always listened and never judged. Hidden disability was the phrase that they used constantly. It took me a long time to understand that and I am still learning so much about it.
Beckett’ s work “Company” illuminates a failure of language to situate consciousness. The reader is only given the inner dialogue of the subject in the written piece. All they have is this language. They don’t know where it’s coming from, how long it will last, what it’s trying to communicate. The reader grasps at clues and information as it comes and goes. This is how those inpatient months felt, and still Kash and I use tools to remember, order, arrange and organise information. Ironically it is easy to forget we have brain injuries because the strategies and tools become a part of the every day while sometimes you feel apart from that day. Each time a strategy helps you to retain information and keeps you grounded in daily tasks it, however, doesn’t ground you in your identity or sense of self as someone with a disability. This process is ongoing as sometimes we find ourselves falling through time thinking ‘i remember’.
