Sorry I haven't written. I had replying to your email on the list of things I wanted to do as soon as Bruce and I arrived back from Brisbane, but that trip had a very different ending to what was expected. Or maybe not. On our first trip to Brisbane there was a massive storm in Sydney and we were stuck at the airport for ages but somehow managed to get on one of the few late flights out. The next time we went to Brisbane there was a heat wave and it was impossible to get cool. So this trip we spent a lot of time jokingly speculating about what this trip's disaster might be; and on the plane back on Monday I said to Bruce that I thought we'd survived, and he said the trip wasn't over yet. And he was right.
We were guided off the plane as we often are, by Bruce holding on to the airline staff member’s arm, and me holding on to Bruce's arm. This usually works very well for us, but there were two problems with this particular guide: she was not looking out for me at all, and she was going really fast. So she didn't just walk me into a wall; she ran me into it.
Bruce said later the sound was like a gun shot. I have no memory of it. The first thing I was aware of was that I was about to land on the ground. Then I was aware of a terrible noise, which turned out to be me screaming in pain. The next thing I noticed was the blood pouring down my face. Who knew there was that much blood in the human eyebrow!
This is part of an email I wrote four days after the event. The event happened three months and one day ago, but reading this email is still a surprise every time. This is in part because even though I experienced it and have written and talked about it many times since, the shock of this terrible 15 June 2015 moment has not worn off. The other reason I’m so intrigued by this articulate description of what happened is that I don’t remember writing it. It’s the beginning of three months that has made me rethink everything I thought I knew about memory.
As a blind person from birth, I cultivated a memory I could rely on. It wasn’t, as so many people seem to believe, that I was somehow gifted a super memory in exchange for sight, but it wasn’t developed through anything like hard work either. Mostly it was just a response to stimulus, like scratching an itch. You need two hands to play the piano or the clarinet, leaving none for reading braille music, so I memorised it. You couldn’t squeeze meals in between a fulltime university schedule and a full social life without knowing where local food was, what it was, and how much it cost, so I memorised it. You can’t manage the workload of a two-day national conference with four streams and 150 presenters if you have to look details up each time you need them, so I memorised them. I didn’t need mnemonic devices or palm cards. I just did it.
Since 15 June 2015, when I’ve wanted to put an explanation of my memory in between ‘sorry’ and questions I now find I need to ask like ‘What’s your name again?’ or ‘What did you just ask me?’, I say ‘I don’t have a good memory.’ I prefer that to ‘I have a bad memory’ but it feels like a massive oversimplification.
Although I was never conscious of it, I feel now that my memory was like a chef’s kitchen, with the right ingredients for any and every occasion, all in their proper place. Brain injury randomly grabbed most of those ingredients, chucked half of them out the window, and the other half in a blender on high. Since then I have had to sift the blended ingredients out into their constituent parts, figure out what’s there and what’s not, and come up with results that still look ok and do the job.
For the first ten days I knew none of this. I was experiencing what I now know to be very common in the early days after sustaining a brain injury – the inability to record new memories. I was home but the lights, and the cameras, were very rarely on. I was able to be awake for about three hours at a time. I ate meals and wrote emails, and somehow got myself to the hospital and back once, but I have only a handful of memories from that time. The worst thing I remember happened in the middle of the ninth night. It was the beginning of the realisation that what I think of as my mind, the place in my head where I’d spent the last thirty-seven years observing the world, figuring it out and deciding how to interact with it, was completely trashed. Imagine waking up to find everything you own either broken or missing – nothing feels, sounds, smells or looks as you remember it did when you went to sleep. Your only consolation is that you aren’t broken as well. I knew I could think. That’s all.
This kind of devastation has a knock-on effect to memory because, again and again, your memory thinks it knows the plan for how to act in a particular situation. The part of your memory that stores how you do something puts forward a plan that your mind no longer has the tools to enact. So it tells your memory that this plan doesn’t work anymore. The thing is that the information saying the plan doesn’t work anymore has to be stored in memory somewhere else – a part that went through the blender, so it might or might not hold on to that information. In the meantime, your mind has come up with some alternatives to the original plan, but they have to be stored in memory somewhere too. And on it goes.
It took me about a month to be able to articulate all of this, so when I say I was at the beginning that night, I mean my feet were at the starting line, not even a millimetre over. All I knew was that something was life-shatteringly wrong. I couldn’t explain it to myself and, worse still, to my partner Bruce, who had no idea why this person who had seemed to be just a sleepy and quiet version of themselves for nine days suddenly erupted from sleep into tears that wouldn’t stop. The shock of it sent me back to sleep for the next twenty-four hours. Day eleven is the first day I remember that had any kind of shape.
This was not where we’d been led to believe I’d be at this point. All of the medical professionals had said I’d have problems for two weeks tops. This was just a ‘mild concussion’, they said, without adding that being medically classified as mild in fact gives no indication of how the person will be affected, or for how long. Day eleven was supposed to be near the end – the turn onto the straight run home to my pre-15-June self.
Home is the preferred memory metaphor of my brain asleep. Aside from the nightmares about the point when my head, moving at top speed, smashes in to stationary wood and metal, and the ones about being unable to coordinate anything despite my best efforts, they are about home. More specifically, they are about being thrown out of wherever I’m living. In one I arrive home to find I’m not allowed inside, and everything I own is in pieces on the street. In another I’m living with a group of people at some kind of a large-scale sharehouse where we each have a self-contained room. Then suddenly it’s been decided that I and everything in my room need to fit in a one-person tent, while everyone else stays where they are.
In all of these dreams about the elements of my memory being destroyed or displaced, I’m the only one who knows that it’s happened. Everyone I encounter is oblivious – even though everything for me has changed, they are completely unaware that I’m not living where they are, or that my belongings are out on the street in pieces. This is a direct reflection of my awake experience. It makes no sense to most of the world why I have exchanged perfectly coherent small-talk with them, then don’t seem to know how notes and coins work, or how I can tell them everything they need to know, and many things they don’t, about the history of the concept of disability, but I can’t remember their name.
If I try to explain we just sink deeper into the quicksand of culturally-mediated memory ignorance. People usually respond by saying something like ‘Oh, I forget stuff all the time.’ And I think 'No you don’t. Not in the numbers I’m talking about per day. And even if you do, the point is that I didn’t until three months ago.’
Yesterday, when it was exactly three months since the Qantas incident, I tried to count the number of times my working memory didn’t work. I was monitoring for two kinds of thoughts: one was ‘I can’t remember,’ as in ‘I can’t remember what I was going to write next,’ or ‘I can’t remember where I put my phone.’ The other was ‘That’s right, I’d forgotten,’ as in ‘That’s right, I’d forgotten there was going to be a Liberal Party leadership challenge’, or ‘That’s right, I’d forgotten you did your second degree at University of Western Sydney.’ It was a low stress day at home, with no multitasking to attempt or busy environments to contend with, and I recorded thirty-seven instances of forgetting. Remember, these are just the ones I remembered to record. According to a 2009 study in the UK, the average adult forgets three things a day.
A couple of weeks back I was doing my shopping when I had a craving for a particular food I hadn’t had for two years. Which food? I couldn’t remember what it was called, even though I used to have it regularly. I Googled ‘flat potato’ but didn’t get any useful results, so had to search through all of the McCain products on Woolworths Online until I found it – hash browns. I bought some that arrived the next day, and I was preparing to take them to Bruce’s place for us to have as part of the next morning’s breakfast. Again, I couldn’t remember what they were called, so had to look it up on the list that Woolworths had handily emailed of the products I’d ordered. ‘Hash brown, hash brown, hash brown’ I repeated in my head on the twenty metre walk from my building to his building, and in the lift from the fifth floor which is ground, to the tenth, which is his. As the doors opened I felt confident that I had rehearsed it enough to get it right. I walked to his unit, He opened the door, we said hello, and then I said, ‘Here are the muffins!’ This is another aspect of memory loss altogether – paraphasia, where you know in your head the word you want to say, but what comes out is a word your brain has categorised nearby. I have said ‘volatile’ when I meant ‘variable’, ‘hospital’ when I meant ‘post office’, and ‘Brisbane’ when I meant ‘breakfast’. Bruce is used to this by now, so he fortunately knows I mean hash browns, especially since his reminder is the only reason I’ve brought them. However, I know I didn’t mean muffins, but the word I did want disappeared. That’s called anomia. Paraphasia and anomia don’t always happen together. It can be one or the other or both.
I experience a similar thing with actions instead of words. I haven’t been able to locate the name for this yet. I stand at my sink, finishing off a coffee as I listen to a podcast nearing its end playing on my laptop speakers from across the room. ‘When this finishes,’ I think, ‘I’ll pick up my iPhone [which is on the bench next to me] and check what the time is.’ When the end of the podcast comes I pick up the remote control to my stereo instead, and wonder what I had planned for it.
I forget things I need – my wallet, my laptop and, after one particularly stressful day, both of my phones (the Nokia I use for making calls, the iPhone that does everything else), one straight after the other. I forget the rest of sentences. I vividly remember excitedly announcing to Bruce ‘Oh, today I finally realised.’ I still don’t know what my revelation was, even though I remember exactly where I was standing as I said this. Most intriguing to the amateur neuroscientist in me, I forget steps in what were, up until that moment, routines. One day a couple of weeks ago I forgot to have breakfast. I checked my email and had a shower, but the step I take every other day between those two things had just disappeared, and I only realised a few hours later when I wondered why I was hungry. I spent a few days not putting subjects on emails until Bruce reminded me that that often causes email programs to file them as spam. I knew the subject line was there but I’d forgotten why it was important. I skipped over it to writing the message like you do when you’re searching for one particular name in a directory.
The advice from the professionals on all of this is to write down, rather than remember, as much as possible. ‘Externalise, Externalise,’ they say, like paraphasic daleks. It was in following this advice that I became aware of just how much extra I have to remember as a blind person. If a sighted brain injured person has a bank note in their hand, they just have to look at it to know, for example, that it’s $5. As a blind person I have to remember how to establish what the note is. If I remember that I do this by measuring it, I then have to remember where I’ve put my cash test and how to use it.
It’s too early to tell to what degree the brain injury has unglued me from time, further complicating my memory. I have heard of people who, since their brain injury, have had no sense at all of the passing of time. That has not been my experience. I do find, however, that if I don’t constantly bind myself to time through clocks and calendars and notes, we fall out of sync. Before the brain injury I used to have a free form day every few weeks where, instead of ordering and scheduling tasks and keeping track of time as usual, I’d follow my brain into whatever it wanted to do whenever it wanted to do it. It was one of my favourite things to do; I could relax and be extremely productive at the same time. If I do this now I become slower and slower, like the ballerina in a music box winding down; except that I feel the vertigo, and sometimes it seems like it’s time, rather than me, that’s spinning.
Through all this, however, I have discovered it’s very possible to manage a life – albeit a substantially scaled down one – by expanding my definition of memory. For example, I’ve discovered that analysis can fill in gaps and give a shape to things that turns out to be accurate more often than not. There’s a quote that I’ve always been fond of since I read it in a Terry Pratchett book many years ago, ‘Logic could take you only so far, then you had to get out and hop.’ Now I have to admit that, for all these years, I have underestimated just how much of the trip logic alone can cover when it’s the only transport available. I have quickly learned to be a twenty-four-hour detective in my own life, vigilant for any clue on what I’ve forgotten I have or haven’t said or done.
A big part of my working memory is my partner Bruce. If I had to manage all of the remembering associated with the fulltime job of healing a brain injury and completing daily tasks on my own, I know I would have no time for what I’m passionate about – my Masters in Literature and Creative Writing. Bruce gently and mostly patiently reminds me that I have to leave the house at ten to have time to get to the specialist, that the local Italian restaurant is not open on Monday, or that the coffee machine needs water to work.
So far it seems that my pre-15-June memory wasn’t dumped entirely, just shaken and stirred. There are bits here and there that I’ve searched for and not found, especially from the last couple of years. However, they might just be buried under all of the music, menus and conference program, which are all still there, as useless as they are now.
The one part of my memory that I’m sure has kept ticking on unaffected by the brain injury is my memory for what I’ve read. From experience I’d estimate that, before 15 June, I remembered eighty per cent of both what I had heard and what I had read. Since the brain injury my unprompted recall of what I’ve heard is about forty per cent but, if I read it, there’s a very good chance it will stay, and I’ll be able to find it on my own.
These four things – logic, my partner, my pre-brain injury memory, and reading – along with thousands of electronic and paper notes, do the work that the rest of my memory isn’t up to yet. In the beginning I thought that, maybe once some of the more bodily symptoms had settled down, the memory damage might heal too. At the moment my headaches and fatigue are much less, but my memory capacity has only improved marginally. I’m reliably informed that the tool that helps the most is patience. ‘A lot of people think that memory is like a muscle,’ a brain injury specialist told me. ‘It’s not. It can be retrained but it can’t be forced.’
Three months and one day in I find it hard to draw many solid conclusions from all of this. The most obvious one is that memory is so much more than short-term and long-term, declarative and procedural. I feel, though, that the most important is that it’s the parts that aren’t there that are the most crucial for understanding the whole.