If you read a bit about it all, one thing that’s very clear is that, basically, we all have very similar brains. What’s sitting in your skull is very similar to what’s sitting in mine.
Of course, with a moment’s thought you realize this is not surprising. But it is easy to forget. We tend to concentrate on what’s different, not what’s shared.
However, quite naturally, because we all have fundamentally similar brains, one person’s experience of the consequences of having an injured or, indeed, ageing (and one way or another deteriorating) brain has a high likelihood of being similar to someone else’s.
With the following series of (brief) explanations, I am trying to get some clarity about both what I feel and know about myself these days, and also what others have seen and tell me. Building on the ‘A Different Everything’ entry from earlier, I’m trying to detail what might have changed, perhaps, forever.
Although my main focus, below, is on my personal experience with a damaged/injured brain, I hope what I’ve learned might be helpful for someone who is caring for someone else, who has a damaged or in some other way declining brain. Or perhaps my experience will be useful first-hand – that is to say, useful for someone whose own brain isn’t all that it once was, for whatever reason. One way or another, it’s always good to know you’re not alone in life.
# Overall, I know I’m more emotional – and that’s across the whole spectrum of emotions. I can be ‘up’ and/or ‘down’ far more quickly. In particular, I can feel far more annoyed and frustrated than I once did, with that sometimes (thankfully rarely) spilling over into anger. This arises with inanimate objects, misunderstandings, lack of thought, greed, stupidity – all the, in truth, common enough aspects of normal life.
I’m sure that being in the company of someone who’s more emotional than whatever before passed as normal must be testing.
As the person feeling these ‘altered’ emotions, it’s very testing for me too. All I can do is try and head it off internally, before I vocalise it. Know that it will pass. But that’s not always easy to do.
# Related to the previous point, I’ve always been a harsh judge of myself; now I judge me more quickly. Being the me who’s living with me can be very hard work when it’s hard to find anything much to like.
# Sometimes I can be lost for words. This needs explaining in a little detail.
It doesn’t happen often these days – and if it does, it’s more likely to be when I’m talking about something I don’t normally talk about, or in company I’m not often with. But I have form here:
– when I was first brought around from the coma I was in, initially (so I’m told), I kept saying ‘it’s a fuck up’.
(Don’t think badly of me (!). I read recently that swearing might be better for you than you’d imagine. And that it might be so deeply embedded in the brain that it remains intact when there’s brain damage.)
Once beyond that, I could be trying to say a sentence but keep resorting to the word ‘criteria’ when I couldn’t come up with the right word. I was doing this unconsciously. This would create nonsensical sentences, with ‘criteria’ being pretty well every other word. (I’m told it was quite disconcerting for visitors.) I have no recollection of any of this, nor any idea why I was defaulting to ‘criteria’.
– when I was out of hospital and trying to write letters (long hand), a version of that confusion would continue to occur. I’d know the word I wanted to write down, but I actually, physically, couldn’t write it. Which sounds very odd, I know, but there are letters I wrote which friends have kept, with crossings-out after crossings-out, as I struggled to be able to physically write the word I had in my mind. Three, four, five times or more …
I suppose you could say that there was a gulf between the thought process and the physical deed: I had the appropriate thought (i.e. the right word) but I often didn’t have the ability to write it down (do the physical deed).
(I’ve tried to get some understanding of all this from an academic point of view – ‘Brodmann Areas and Lesions’ and what-have-you. And maybe what I was experiencing ties in with damage to one or more of these areas but … it’s a very technical subject. If you’re keen there’s plenty to look up online. I started with Epomedicine – but only because it was vaguely understandable to the total layman.)
On a practical level, all I can say is if you are aware that you’re experiencing this kind of problem, don’t give up. You might well be able to help it happen by keeping on trying. It might be that things improve with the simple passage of time.
And if you’re witnessing someone struggling with their words, be patient.
# I didn’t and don’t experience any number blindness that’s a close equivalent to my experience with words, but I can often be able to see the time on my watch but be unable to say it out loud accurately without a lot of effort. Further, I’m not totally sure but it seems some numbers (times) are harder for me to articulate than others. Perhaps I have a number equivalent to ‘criteria’.
# My memory is … often odd. I can, sometimes be briefly aware of my brain and thus my memory beginning to tire and becoming likely to not function well in the near future.
(This, if you think about it, begs questions about just who this person is, who can be aware of their brain getting tired. It’s as if this ‘aware person’ is something and, indeed, somewhere different than my brain.)
Anyway, whether or not I’m aware in advance of my brain tiring, sometimes my ability to invoke a memory lapses. Thus far, though, I can’t identify what the cause of the failure is, nor the context within which it will fail. It doesn’t seem to be a simple case of tiredness being the reason.
# Another aspect of memory is the era that a memory is linked to. Especially in the weeks and months close to the crash, I found myself able to hold a half-decent conversation about topics that I had a long-standing pre-crash familiarity with, but struggling with newer data.
With hindsight, plus the explanation of experienced experts and a little bit of my own very amateur research, I can understand that that’s all a function of which part of my brain was/is damaged. It is not the case that ‘the memory’ is to be found in just one part of the brain.
It is my experience that my memory is still improving as time goes on. This seems to chime with the idea I’ve read about, that the brain will try to find/create different routes for connections to be forged along if a part of it gets damaged.
# I can sometimes feel simply overwhelmed. In the early years I was far worse than I am now, in that I was unable to understand that that’s what I was feeling. It was as if there was too much for my brain to handle, so it would just shut down as a safety measure. Visibly, (I’m told) I’d both freeze and slump. My partner could spot it and tell me to go and sit down and have a rest. I would, and I’d regain the ability to function again after a while. The other visible sign was that I’d kind of flick my fingers – opening and closing my palms rapidly.
There are days I can still get overwhelmed but it’s a relatively rare event. Importantly, I’m generally able to spot it looming before it actually overtakes me. And, once spotted, I know to not ask so much of myself.
# A different kind of overwhelmed can arise, but it’s hard to pin it down neatly. It occurs with travelling. If I’m going somewhere and it’s very busy, if there’s an obvious likelihood of traffic jams, of being stuck, trapped, of not being able to get out (etc)… it can simply overwhelm me. And then raw emotion will kick in. It’s panic. And panic can overrule everything – rationality, clarity, everything.
If nothing else, this is all incredibly wearing – not least because nothing really changes. I’ve tried to explore and explain all this before, with ‘I Didn’t Give Up’ and ‘Travel, You Idiot’.
I have no answers. All you can do is face up to it all, explain it to those around you that it might have an impact on, and try to avoid the contexts within which it will most likely arise. (Travel off peak or go via a back-route and so on.)
# From the first days in rehabilitation to the present, processes and repetition – routines – are key for me to be able to function with any degree of stability. I want no surprises. And so I need day-to-day processes to achieve this.
I am very, very fortunate that those closest to me understand this and can cater for it. It’s something to bear in mind in connection with any other damaged or deteriorating brain.
# My ability to understand instructions is significantly impaired. I need things to be explained sequentially, broken down into steps. When they are, I can understand them. Step-by-step processes are crucial.
# Related to this, these days I struggle with understanding strategies – the bigger pictures. A good example is playing a game. I can grasp a simple goal – go from A to B. But I have to work very hard to realize that I can also go from A to C and then to D and then back to B to achieve the same goal (getting to B), but via a different strategy. That’s a simple example but the same general problem can arise in more subtle (or complicated) ways. In effect, I need a process to explain strategies. Which, in practice, means I need someone to explain a strategy to me. On the plus side, with an explanation, it is possible to learn.
# Underlying all these process issues, all my life I’ve always needed to know the ‘why’ of something if I’m to readily learn. I have never found accepting things at face value easy to do. Now though, that’s accentuated. These days I really need to know the background, the reasons, if I’m to learn anything new. Which is a big ask. Big, and tedious, too, for whoever it is I’m nagging at for an explanation.
I don’t know how applicable this might be to others. I think we all have different ways of learning that best suit us. By experience, explanation, instructions, orders … I imagine what works well for any individual is something that’s set early in life, but I’ve not tried to research it.
# My sense of time is very strange now. Of course I can understand time as a general notion. But how time feels is something completely different. The best I can do to explain it is to say that, for me, there are huge divisions between each and every part of every day. What’s ‘earlier this morning’ for you is yonks ago to me. I can live with it, but it significantly distorts how I feel.
# After the crash, for a long time I needed to work to a daily timetable of no more than 15 minute segments. That was the extent of my being able to even vaguely focus on anything. These days, yes, I’ve improved … but I still am far happier with a timetable for the day.
# And closely related to that distorted sense of time, whatever – and I mean whatever – I am doing, I will feel under pressure, hurried. Yes, (leaving aside normal, day-to-day minor ‘deadlines’) I can understand that I’m not being rushed at all. But how I feel is wholly different.
# I am often worried – anxious, nervous, whatever you want to call it – for no conscious reason. And the key word there is conscious. For no known reason, I can find myself worried even when I’m about to do something I like to do with people I want to be with. I will often wake up worried – as if I’m just about to go to the worst exam of my life. All I can do is work with it, work through it. It will, generally, fade as time goes by.
The key thing is ignoring it – but it can be incredibly distracting and tiring.
The Combination Issue
# Predictably enough, the aspects to my mental life I’ve mentioned above can all combine – and hence be amplified. They aren’t separate things. Thus, at any one time I can be emotionally fragile, struggling to find a word and feeling hurried. And any other permutation is possible. You get the idea.
In essence, any of what makes up my mental life these days can be a source of stress for me, individually or in combination. I have to live with that and try to work through it.
For anyone observing someone appearing ‘stressed out’, the hard task is to remember that, for the person with the stress, the pressure they’re under is all too real for them. And that’s regardless of how ‘justified’ the stress is in the eyes of you, the onlooker.
# For a fair time now I’ve been aware of how poor my thought processes were in the years immediately after the crash. That self-awareness means that, in turn, I’ve lived for a long time with me judging me, and me (often) judging that judge(ment). How am I doing – in all regards? Not least, how am I doing in all the aspects of day-to-day life I’ve mentioned? Was I struggling with words today, or feeling especially confused or hurried or worried or … ? Etc.
That probably sounds like I should be locked-up. But perhaps it’s inevitable. Besides, I don’t know how anyone else thinks and feels. And nor do you; nor does anyone.
It’s worth keeping in mind that the behaviour of someone with a damaged brain isn’t necessarily predictable, nor by others’s standards ‘normal’. But this is a variable thing though, in all regards. What’s more, how someone behaves can be quite fleeting.
For example: (I’m told that) when I was in the rehab ward I’d be sure that red is green and argue that that’s the case until I’m blue in the face. But if you walked out of the room and came back in, I’d tell you that, of course, red is red.
These days I’m not so squiffy (!), but I think there is a general principle in all this that should be kept in mind. Namely, whoever we are, none of us should automatically judge a person with brain damage by the same behaviours, values and bench marks commonly applied to others.
Obviously, none of this is plain sailing. It’s a lot to ask of yourself. (Let alone anyone else.) It requires awareness, reflection, self-management, self-analysis, self-knowledge. Others far more intelligent than I have said that knowing yourself honestly is one of the hardest things for anyone to do. So, it can all be difficult.
But on the other hand, it could be far, far worse. And, in my experience at least, the effort put in is rewarded. That may well be the experience of others, too – both the damaged person and anyone close to them.
I’d be a liar if I said any of the above fills me with joy.
At the broadest level, increasingly, I don’t like looking at/thinking about myself – the repetition inherent in my lived-life is both boring and frustrating. It’s also saddening. Yes, all the self-awareness and analysis is valid and worthwhile if you’re trying to understand your brain-damaged self. But brain damage comes with loneliness in its wake.
It’s understandable that anyone whose brain is damaged is, to some extent, living a life that’s removed from, distant from, the more common life-experiences of everyone else. It’s understandable, but that doesn’t make it any easier. Humans are, by default, social animals. Brain damage makes sociability that bit harder to achieve.
I’ve tried to look into this, face this, explain this before. And as I’ve thought before, perhaps an enforced solitude is something we all need to keep in mind. Even without brain damage, at some stage it could and probably will happen to everyone.
Brain damage might well:
- make someone more emotional, likely to react more strongly to events – good or bad.
- impair someone’s abilities with words and/or numbers.
- disrupt someone’s memories, perhaps particularly when they are linked to a particular time-frame.
- make someone prone to being simply overwhelmed, by life in general or when a specific activity arises.
- make someone prone to panic as they are overwhelmed, a panic which can seem wholly irrational to an outsider.
- mean life is easier to cope with if there are repetitive processes in place to reduce any surprises.
- mean that how things are explained itself needs to be reviewed, to make sure they – the actual explanations – remain understandable to a damaged brain.
- mean that explanations about the ‘why’ of any or all aspects of life might become more important.
- leave someone with a very different sense of time than is commonly experienced.
- leave someone needing timetabling and structure to every day.
- generate a false sense of urgency and a misplaced sense of being under pressure to get things done now.
- generate a sense of worry and nervousness in someone, that might be but doesn’t have to be related to anything specific.
- create a general feeling of being ‘stressed out’, perhaps for clear reasons or perhaps for more complicated combinations of reasons.
There is a lot of seemingly odd irrationality to the consequences of brain damage. Understanding it as an outsider – as a partner, carer, friend or whoever – is hard. But bear in mind that it might well be harder for the person with the brain damage. Not least, it can be very lonely living a life that in many respects may well be now markedly different than the lives of everyone around them.
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