4-point restrained at the Institute of Living 2013 routinely for 19 hours or more.
Let me introduce myself. My name is Pamela S. Wagner, and I was for most of my 65 years a resident of Connecticut. I have a long history diagnosed with serious mental illness and have been on disability for many years because of it. Five years ago, I was admitted to the Hartford Hospital’s Institute of Living on a 14-day PEC. I would like to tell you about some of the grotesque brutalities that transpired there and the egregious “treatment” that passes for care in that hospital.
Ever since I was discharged from the Institute of Living in February 2013, to which facility I had been committed as an involuntary patient under an order known as a Physicians Emergency Certificate. I have felt too terrified even to read the partial chart which the Connecticut…
So this is a post especially for anyone who likes reading my blog,
Hello! I just wanted to say
I have added an email sign up form, up at the top right of the page.
It means I can email you when I write a blog or have anything interesting to say. It’s Mailchimp, so you have no worries about me using your email address for evil, because they know who I am, and could easily have me hunted down and made into handbags if I do. I’m sorry, but I couldn’t get a button with Milchimp, and I hate popups, which was the only other alternative. So instead there is a pretty link in blue (or you can click right here instead).
And I want you to click it to join in as an email follower.
I want to use the sign up for all the usual information about blogs.
But also, I will,…
Post anything I figure out about publishing (self and not-self) and promotion; it’s what I’m busy doing at the moment, and it’s massively complicated, but any tips I work out I’ll send out to followers rather than put in a post.
Answer any questions about brain injury, stuff I’ve figured out about mental illness and all the rest. I don’t mind publishing most of this on my blog, but some things I don’t want to be searchable, and some just aren’t that relevant to most people.
At some point soon I want to start sharing with you a project I’ve been working on. It’s an exciting one for me, but a bit odd, so I want to share it with this follower list first. More information on that soon…
Repeated small note: this is one of three methods that I found worked for me last week, but they aren’t replacement for medication, therapy or living healthily, they are only in addition to those things. They can’t cure depression, but notice the warning signs early enough and they may help to stop it taking hold. There are plenty of excellent blogs and medical sites talking about depression and the various ways to fight it, but I haven’t seen these three methods (methods one and two in previous blogs) anywhere else, so I’m writing them down in the hope they will be of use to someone. If they don’t work for you, please try not to get frustrated, we are all different, and depression is a complex illness.
When the doldrums start to take hold, try:
Doing something you don’t want to do
This sounds counter-intuitive. When I start getting depressed, all I want to do is hide in comforting, often repetitive, behaviour. I want to watch TV programs I’ve seen a thousand times before; or eat cake, then biscuits, then more cake; or browse the same websites over and over. However, instead of making me happy, ultimately this behaviour makes me feel useless and that I’ve wasted time; which leads to me feeling even more disgusted with myself.
As I explained in previous blogs, the things you want to do when depressed tend to be the very things that will lead to more depression. It’s as if the depression gremlin himself is taking control of your behaviour to perpetuate your state of misery. In order to reduce the power of depression you have to ignore what the gremlin is telling you, and do the opposite. In this case that means stop seeking out comforting, lazy behaviour and do something useful that you don’t like doing.
The thing you choose to do needs to fulfil certain criteria:
Not too difficult or stressful, something you can definitely do, even when feel rough
Something that needs doing and that you tend to avoid doing, so that you can feel smug afterwards
Preferably something physically active
If not physically active, then something that takes all your concentration
The best things I have found are to clean the flat, sort out bills, or have a tidy up/clear out. Or all of those.
Now the depression will try and convince you that it isn’t fair you should have to do something crappy when you’re feeling bad, but that’s because it wants to survive. And if you’re feeling crap anyway, then you might as well make the most of it.
At the end of the activity you may still feel sad, but at least you won’t have an additional reason to be angry with yourself. And your home will be clean.
A final round-up of the information in these three blogs:
The best time to fight depression is before it has really taken hold. It’s not easy to work out when this is happening, so try to pay attention to when your thinking starts to get negative, learn what kind of thoughts appear when you start getting low.
When are you are still in those early stages, the following methods may help:
Paying attention to pleasant sensations/happenings in order to combat negative focus. Method one here.
Being nice to people, so that they are nicer in return and that makes you feel more positive and happy. Method written about here.
Do something that you tend to put off, so that you can feel smug afterwards.
I hope that at least one of these methods is helpful for you. If you’re suffering with depression, please remember you don’t have to go through it alone.
Small note: this is one of three methods that I found worked for me last week, but they aren’t replacement for medication, therapy or living healthily, they are only in addition to those things.. They can’t cure depression, but notice the warning signs early enough and they may help stop it taking hold. There are plenty of excellent blogs and medical sites talking about depression and the various ways to fight it, but I haven’t seen these three methods (method one in yesterday’s blog, method three on Friday) anywhere else, so I’m writing them down in the hope they will be of use to someone. If they don’t work for you, please try not to get frustrated, we are all different, and depression is a complex illness.
Be nice to everyone.
On the whole I think I’m a fairly cheerful and friendly person, however, when that depression gremlin starts to tighten his grip on my soul, I become negative, whingy and I don’t smile. This is the depression keeping itself going, because by being unpleasant I cause people to be unpleasant back and then the gremlin convinces me that everyone is being horrible because they actually hate me, so I become even more unhappy and unpleasant, and the misery continues. Usually I tell myself at the time, that I physically can’t smile and be friendly, and there is definitely a level of depression when this is the case, but there are many points before that when it is difficult to be nice to people, but still possible. And very much worth it.
And I don’t think I’m the only one who acts this way, I’ve noticed many other people get tetchy and snappy when depressed, so that everyone around them also becomes tetchy and snappy; it’s self perpetuating. In order to stop this cycle, the best method is to be nice. Even to people you don’t like;especially to people you don’t like. This starts a new cycle, you’re nicer to people, so people are nicer to you, so you feel happier, so you feel more able to be nice.
Now if you are struggling, the depression gremlin is probably whispering to you that you shouldn’t have to be nice to people if they can’t be bothered to be nice to you; that you haven’t even the energy to be nice anyway; that you’re too hopeless to even try. However, he’s saying all that because he doesn’t want to create a situation that is likely to make you happy. Remember why you’re doing this: not for anyone else’s benefit, but for your own.
Note!: If there’s a danger that people might take advantage of your niceness, remember being nice doesn’t have to mean you do whatever anyone wants. You can still say no, just do it gently.
For all my posts about mental illness and brain injury, I haven’t talked about depression, because up until now I didn’t have any useful coping methods to pass on. However, the last few days I’ve felt the depression gremlin creeping up on me, but instead of it dragging me into the murky depths as usual, I figured out a couple of ways to ward it off that actually seemed to work. So in hope that these methods might help someone else (although very aware they might not), here goes…
Spotting the Warning Signs
It’s important to recognise the early signs that depression is curling its fingers around your thoughts. Once the depression has you fully in its grip, most methods of escape are useless (including the following ideas). For me, the warning signs are: believing that nobody likes me, ruminating on past unfairness that doesn’t matter anymore, and thinking of myself in a negative way. When I notice most of my underlying thoughts are like this, bubbling under the surface, then I know I’m in trouble. The sooner I spot the signs, the more able I am to stop a full attack.
So if you notice the first hint of the blues, this might be something to try to stop them taking hold…
The First of the Three Little Things
Focus on small but lovely sensations/events.
This sounds twee I know, and seeing it written down is already irritating me, but when I tried it it simply worked.
Every time you find negative thoughts crowding your head, stop and take a moment to pay attention to something pleasant. For example focus on how your feet are warm, or think about a friendly text message you got earlier, or just remind yourself that something nasty isn’t happening: eg I’m really happy I don’t have to go to the dentist today. Properly focus on that good thing, let it be all you think about for a few seconds.
If you are anything like me, you’ll now be thinking: but how can I focus on my warm feet when my hands are cold? Or Maybe I don’t have to go to the dentist, but I do have to go to work! The thing is, there are always going to be bad things happening, I’m not asking you to pretend that there aren’t, I’m just asking you to try ignoring them for a few seconds and focus on something good. Don’t just do this once, if you find it helps, do it repeatedly.
And with the negative response, I don’t believe it’s the clear and rational thought that it seems to be, but the depression messing with your perspective. Because the depression gremlin is very persuasive and he wants to survive, he makes sure that you perpetuate behaviour that will make you miserable. If you try and do anything that might quash the depression, then he needs to convince you you’re wrong. So, ignore the nasty voice telling you to dwell on shitty things and, for a few moments, concentrate on the delightful; relish your senses, or a memory, or just anything nice. Give your mood a few moments of relief.
I reckon this method works because a big part of depression involves the build up of whispered nasty thoughts. You might not even notice these thoughts until they have taken you over, but they are there: telling you you are crap, that your life is awful, that everything is going wrong, that you can’t cope. It’s very difficult to just stop thinking these thoughts because they are so insidious and constant, but it is possible to drown them out with positive repetitive thoughts.
Next method on Wednesday…
Let me know if any of you find this helpful. I’m always very aware with depression that any advice on overcoming it can seem like trivialisation of a very serious and complex illness. I’ve been battling the gremlin for most of my life, and I know that there are no simple, cure-all solutions, but I’ve managed to figure out a few methods that seem to help me, and I really hope they might benefit someone else too.
Phobias have been found to occur frequently in people with traumatic brain injury (the word ‘traumatic’ here means physical trauma rather than emotional). However, I would guess they can also occur with PTSD as a distortion of triggers.
Note: The below method is a way of dealing with fairly simple phobias and panic, but it’s important that anyone experiencing psychological symptoms from trauma or BI also gets professional help.
In the year after the accident I acquired a ridiculous number of phobias. They seemed to appear at random. I became scared of the dark, crossing the road, insects, mice, conversation, sleep, lack of sleep. Some of these phobias I still have a little now, but for the more concrete ones I was able to come up with a method for getting rid of them.
My understanding of how a phobia sticks around is this:
Usually, an incident causes us to associate danger with the phobia – let’s use Trevor’s phobia of the dark as the result of falling down stairs in the dark, as an example. With a BI, the phobias seem to appear without cause, but the effect is exactly the same – fear associated with specific stimuli.
Every time afterwards, when Trevor is in the dark, he experiences fear, not just thoughts and emotions, but tangible physical feelings. His heart rate increases, he finds it difficult to breathe, he starts to panic.
These intense reactions feed into the fear. He becomes more afraid because his body is reacting in an extreme way that is, in itself, scary ie. positive feedback.
Having experienced the frightening symptoms of terror in 3. while in the dark, his brain (not the conscious bit, but all the automatic processes he has little control over) adds a few new red flags to the idea of ‘dark’ and his phobia grows.
This can also be shown by a nifty diagram
In order to overcome a fear it is necessary to control the physical reaction to it and stop the positive feedback, this means creating new, calm associations with the phobia, to work at its blurry edges.
So Trevor starts to inch his way into darkness, using the following:
He stands in a lit room, but at the doorway to a dark room, not scared.
He breathes slowly, calmly, reassures himself that nothing can happen, the light is right there, he can see fine. He concentrates on the sensations in his feet, his hands; still not scared.
When he feels completely calm, he takes a step forward into the darkness. He starts to feel a little panic, slight increase in heart rate and speed of breathing.
So he stops. Repeats 2. until he feels calm again, all the while not moving.
If he reaches a point where he can’t calm himself, then he takes a step back into the light and repeats step 2. It’s important that his final association with the dark is one of calm, this is way more important than getting as close to his fear as possible.
Sometimes this takes a few attempts, and it is a slow way of challenging anything, but it seems to work.
If your phobia is one you can’t physically approach in this way, then there are substitutes. For example: looking at photos of it, reading about it or writing about it. With each of these methods, it is still important to approach the fear slowly, giving yourself time to be calm.
It’s also a method that can also be used in a number of other situations when fear and panic take over. Panic is very destructive for people with a BI, because it causes the brain to shut down functions that are already struggling. Whether trying to have a conversation, read a train timetable or cross a busy road, it’s very easy for someone with BI to panic when they find something difficult. This leads to irrational thinking taking over, eg I can’t do this! Why can’t I do this? I can’t do anything! or even I don’t know what’s happening! I’m in danger! But that panic then further shuts down reason and cognitive skills, leading to increased panic – the positive feedback shown above, and shown in the diagram below.
The truth is, you can’t make the BI go away, the difficulties will ease, but it takes time. However you can stop the positive feedback from making the problem worse. This also has the long term benefit of reducing stress, which in turn gives your brain and body the peace they need to heal.
Whatever it is you’re trying to do, when it starts to get difficult, as long as you’re not in immediate danger, pause for a moment and go through the following steps (this is almost identical to above, but to reiterate…):
Breathe slowly, calmly.
Reassure yourself that nothing can happen, you are fine.
Concentrate on the sensations in your feet, your hands.
Keep breathing and be aware of your breath.
When you feel in control, carry on.
Remember it’s ok to find things difficult, and most of the time it’s fine to wait, there’s no danger involved. The danger only comes when panic takes over and you make bad decisions (speaking as someone who has panicked crossing the road and then walked out in front of cars, leading to a phobia about crossing the road!)
This method does not work instantly, it takes time and practice to be able to control panic like this. The best time to start practicing is when you don’t need it and already feel calm.
This method uses techniques I learnt from meditation and mindfulness. Both of those are more difficult and take commitment and are not necessary for this method to work. However, if you can learn them, they are incredibly valuable.
If you have any questions about this, please free to ask in the comments below.
An Initial note about how irritating positivity can be
I have a very fine line to tread here, between giving positive advice and seeming dismissive of illness altogether – the ‘buck up and you’ll be fine!’ bollocks that well-meaning idiots come up with. The latter is never my intention.
So I will clarify: Brain injuries are often impossibly tough to deal with.Many times during my recovery I gave up, I decided that it was too difficult and I couldn’t cope. Unfortunately, simply giving up didn’t help much, the problems didn’t go away, so I had to carry on.
For anyone going through this now, my heart goes out to you, you have absolutely every right to think Fuck your positivity! My life is shit! And when you are feeling like that, this blog probably won’t help. However, there will be other times, when you feel a little more able to make plans and hopefully I can pass on what I learned about how to do that.
Losing the Things I Loved
With the BI, one of the toughest things to come to terms with was that I could no longer do the things I loved. I was struggling so much with getting my brain to work, that I had to give up studying; my job as a gardener; I couldn’t read books; I struggled with seeing my friends; I couldn’t even think of going on an adventure to a new country. I felt that everything that made me happy had been taken away from me and that there was nothing in life I could enjoy. This was a distortion of my situation, maybe an understandable one, but one that didn’t help me at all. I still had people in my life that I loved, but what I needed was purpose, without that everything felt meaningless.
There are three points to this blog, they take time to be fully understood (or at least, they did for me), but I believe they are crucial to being happy when recovering from BI:
Your situation now, is not your situation for ever. Try not to think about what all this means for the future, the important thing is to find a way to be happy and calm now (not just for happiness’ sake, but also for your health), and one way to do that is to find something that will engage you, stimulate your mind but not stress you. Any more complicated questions can be left for later.
Happiness lies in having purpose and that comes from investing time and energy into something and then getting something back out as a result. The two ‘something’s can be almost anything
There are infinite ways to live your life, even with massive restrictions, there are many passions to pursue, and many ways to get a sense of purpose, but you will never discover this if you are focused only on what you have lost.
Notes on Happiness
I believe that happiness and meaning in life are far simpler to achieve and far less restrictive than we are trained to think. You do not need to have a relationship, career, kids or money to be happy. Those things can all make you happy, but they can all make you unhappy.
I think the reason for this is that it doesn’t matter what you invest your time and energy in (eg children, a career, painting, learning French, collecting thimbles) so long as you make an effort and get something in return (love, success, beautiful pictures and the joy of painting, knowing French, a beautiful thimble collection).
If you don’t invest time and energy, but get something out anyway (I imagine being the child of rich parents is a little like this, without any effort you can have whatever you want) then you will feel there is something missing, an emptiness.
If you invest time and energy into something, but then get only bad things in return (for example, when the child you’ve loved and nurtured says she hates you, or your boss ignores the project you’ve been working on, or if you decide you actually hate thimbles) then you will feel your passion has been wasted and you will be unhappy.
If you invest energy in nothing and get nothing, you won’t be happy at all.
Being ill does not change this, but it can make it tricky. It may be that the things you invested energy in before the BI are either no longer possible, or no longer bringing you joy, and this is why you may need to find new passions.
When I was ill, my frustration came from thinking that the only things worth doing, were the things I could no longer do. However, the truth is they were just the things that I had been doing up to that point, they were not better or any more conducive to happiness than the things I was eventually able to do after I got a BI. It’s true that taking up new passions was extremely difficult, and I worried that I’d never be able to enjoy them because of that, but luckily that isn’t how enjoyment works.
Having to invest more energy into doing something can, with time, make it more enjoyable than when something is easy.
Some tips on finding new passions
Experiment, try as many different things as possible: painting, writing music, getting a penfriend, sending postcards, knitting. You may hate many things that you try, or find that you aren’t able to do some of them, but there will be something that you can do.
Pay attention to what other people are doing and copy them. Ask your friends and family, look online (here’s a Wikipedia list of hobbies )
Revert a little to childhood. With a BI, you have the perfect excuse to pursue hobbies you loved as a child. Play with Lego, draw cartoon characters.
Don’t compare your ability now with what you could do before. For starters, if you are just setting out on a new skill, it will take time to learn to do it properly. For seconders, although having a BI can make things massively difficult, it can also give you a unique perspective on whatever you pursue. Personally, I’d rather be unique than good.
Use technology – there are now so many apps that can aid a new passion, it’s worth exploring them to see what’s available. I have a friend who has become a master at creating beautiful music using free instrument and editing apps. .
The Internet is an incredible aid. Even people who have grown up using the Internet, tend to stick to the same kind of sites that they’re used to. Instead go exploring. With a BI, change and unfamiliarity can be quite unnerving, but the Internet is a fairly safe place to be adventurous in. Take it slow, read blogs that suggest sites, use sites like Stumbleupon, bookmark anything interesting you find even if you can’t cope with looking at it the time. Plus forums are a great place to meet and connect with people.
Approach any new activity without the expectation of a specific end result. Even more tricky is that you might not enjoy the process of what you’re doing at first, but don’t give up for that reason. Once you have mastered the basics it gets easier and you can start actually enjoying it. I took up drawing at this time (some examples are in this blog), I’d done an art degree years before, so my expectations were high. Often I hated what I did. It took months of trying different doodles before I found a new style that I both enjoyed doing and liked the end result. Some of the pictures from that time have ended up part of the Xogulano Islands blogs that I write about. They aren’t great drawings, but I love them because I don’t know anyone else drawing pictures like that.
Don’t dismiss something because you tried it before the BI and didn’t like it. With a BI, your abilities have changed, your passions may also have changed.
Final Advice on Investing your time:
Don’t have all your eggs in one basket. Almost any endeavor can fail, and if all your time has been invested in one thing, that can be upsetting.
Try not to be swayed/dissuaded by what society/peers tell you, you should/shouldn’t be doing. It’s irrelevant. It’s always irrelevant, because people are massively varied and the things that can make them happy are also massively varied.
Try to take into account how much energy and ability you have at any one time and try to have different interests for different levels of ability. Sometimes I didn’t have the energy to draw, sometimes I had enough energy to go out and take photographs, sometimes all I could do was shut my eyes and think up stories. It was good to have this choice. Because my memory was so bad, I found it useful to write down the options and then refer to them when needed.
Note: I haven’t dealt with motivation at all in this blog (I’m trying to keep them to a manageable size) although I’m aware that with a BI or just when exhausted from illness, motivation is a real problem. I will focus on it later.
As always, any comments, additions or questions are welcome.
Continuing with things I needed to understand about my brain:
For previous BI and PTSD posts look under the category to the right.
BI: Diffuse Brain Injuries – these aren’t often talked about, but they seem to be fairly common, if less straightforward than focal brain injuries.
BI:Everything is Information – Everything we sense (see, hear, taste and feel to put it simply) is information that must be interpreted in the brain, and this can go wrong at a number of stages. The going wrong can be caused by both mental illness and brain damage.
PTSD: Wired for Survival – there are plenty of non-survival things going on in the brain (feeling confused, making puns, happy memories) but taking precedence is a need to survive.
Diffuse Brain Injury
A focal brain injury is localized to one area, a diffuse BI is spread over lots of areas, although the damage may be smaller and less intense in those areas. (Wikipedia page: https://en.wikipedia.org/wiki/Brain_injury )
I had a diffuse BI, which is why I had trouble with so many different aspects of functioning: memory, processing, movement, balance, sense of smell and so on. Because the damage did not wipe out any of those areas completely (as it might in a focal BI) I could be fine some of the time, but the more I did, the more my ability would disappear.
This made it confusing for other people (and me!) to understand what was actually wrong.
Everything is Information
I mentioned this briefly in a previous blog, but in order to understand BI, I think it needs more attention.
Images we see, sounds we hear, even physical sensations and smells, are all types of information that must be processed. This takes both energy and a number of different cognitive tools.
The process: Information enters the brain through an organ (eg eyes, ears) and then bounces around the brain at great speed using existing information stored in the brain to interpret the new data. New connections are made and memories are formed on the basis that the brain thinks they might come in useful, a lot of information is discarded. The decisions for how the information is interpreted and what new memories are made, is made by routines (like computer programs) usually written in childhood and kept throughout adult life.
For example when we watch TV (I’m going to use Community as an example), our brains are very busy. These are some (but not all) of the processes that are happening. We are utterly unaware that most of them are happening:
Reading facial expressions – using memory to to decide what the expressions mean, based on experience from childhood of what those expressions meant in the past.
Remembering who characters are – using recent memory and facial recognition to know who they are (eg that’s Jeff, he’s a lawyer), but also older memories of how we feel about people like that (he’s vain, I find this silly).
Understanding language – using memory to know what words and expressions mean.
Understanding the emotional intent behind speech – the tone, pitch and even speed of speech, indicates this.
Interpreting jokes – using all sorts of memory, some linked to the programs itself, some to lifelong memories.
Forming new memories – about characters and situations that will be useful when watching the next episode.
Forming new opinions about life – making associations between people and behaviour, between actions and consequences.
Predicting – what might be about to happen based on previous experience (there’s Chang, he’s about to cause trouble).
With a BI, some or all of the processes can be damaged – either they don’t happen at all, they happen slowly or they happen wrongly. With a diffuse BI these abilities can change by the minute.
Sometimes I could watch a TV program for an hour and more or less understand and enjoy all of it. Sometimes I didn’t really get plot or even speech, but would enjoy watching the facial expressions (Jeeves and Wooster were perfect for this, they would keep me entertained for hours). Sometimes I couldn’t open my eyes, because trying to process what I saw hurt too much – this pain is difficult to explain. The sensation was a little like trying to do complicated arithmetic in your head, in a noisy room. It was a pain of extreme struggle and frustration which would quickly intensify into migraines, muscle pain etc.
As can be seen in the process above, memory is the way all this information holds together. There are many different types of memory that are stored in different parts of the brain (this website has a nice neat diagram showing the different types). It is possible to completely lose one type of memory, or to partially lose lots of them. Access to these memories can also be slowed down to varying degrees.
The way PTSD affects our processing of information is slightly different. Whereas BI slows down, stops or corrupts certain processes, PTSD tends to distort them through a filter of extreme emotion. Because PTSD involves emotions all turned up to 11, information that should be fairly straightforward (eg there is a dog) becomes a warning or a tragedy (that dog is about to attack me! or that dog is sad, it’s been abandoned, oh my God I have to save it!).
When PTSD and BI come together it can get truly ridiculous, because the faulty information caused by the BI then gets further distorted by the PTSD.
For example, once I was walking down a street and getting tired doing so, therefore my ability to process images started to fail. I saw a crisp packet move at the side of the road, couldn’t process what it was, so the PTSD filter came up with It’s an alien! It’s about to attack! And I was genuinely scared. It was a few moments before my memory kicked in with the information that I didn’t believe in aliens and that it was clearly a crisp packet.
Wired for Survival
PTSD is what happens when the brain believes we are in constant mortal danger. The symptoms are its way of dealing with that as it puts us in a to a physical state where we are ready for fight or flight. Due to a genuinely dangerous event, the brain seems to get locked in that state of extreme panic.
There doesn’t seem to be any logic as to why that particular experience affects the brain that way – like most people, I’ve had plenty of near-death experiences in my life, but this is the one that changed how my brain functioned.
These are some signs that the brain is locked:
(Note: All of these can be experienced when a person is stressed, but then when the stress passes, so do the symptoms. With PTSD, the symptoms are at full pelt and they don’t stop. A frustrating mismatch between our brains and modern life is that most modern stresses require clear thinking, but little actual danger. However, our brains assume all stress comes from physical threat and that thinking is irrelevant in such situations.)
Hypervigilance– paying too much attention to sounds. This is our brains trying to listen out for danger. It is the reason we get more annoyed by noise when we are stressed and trying to concentrate, because under stress our brains think we are in danger and so are trying to listen for any evidence of that.
Not sleeping – deep sleep is never a good idea when there is danger.
Physical symptoms of stress – tight muscles, gritting teeth, restlessness, these are all signs that the body is ready to fight or flee.
Over interpreting situations – looking for any sign that something might have gone wrong and then fretting about it.
Struggling to eat – you brain doesn’t want you eating because it is difficult to fight or flee if you’ve just had a big meal.
Knowing that this is what’s happening doesn’t make the symptoms go away, but it does at least give an awareness that our understanding of the world is distorted: that we have no reason to be afraid, that people around us aren’t threatening or dangerous.
One knock on effect of this constant level of threat is exhaustion. When emotions are always set to 11, the body is working too hard all the time, without any proper rest.
People talk quite a lot about the dramatic symptoms of PTSD (flashbacks and panic attacks) but the exhaustion was most debilitating effect for me. It was so complete that it felt supernatural – as if all my limbs had been injected with lead and my mind was filled with fog.
Next BI and PTSD blog: The Basics of Caring for Yourself with BI and PTSD
There are a few things that I had to figure out in order to interpret the bizarre world of BIs (brain injuries). I’m going to try and sum them up in two blogs.
The focus of this blog is the discovery that:
Emotions and thoughts make up only a tiny part of what the brain is and does.
Up until I got brain damage I thought I had a clear idea of what my brain was. My brain was the thoughts that I had, the emotions that I felt and the copious amount of daydreaming that I did. I was aware of other stuff going on that I had no control over – my dreams for example – but I saw those as small blips in an otherwise logical organ over which I had fairly good control.
When I got the BI I realised (slowly) that my emotions and thoughts were a tiny, and largely powerless, part of an organ that was extremely busy doing lots of things that I knew nothing about.
Some neuroscientists describe the conscious part of the brain (the thoughts and emotions, the ME part of the brain) as being like the CEO of an large corporation. As in, it thinks it has complete control, but for the most part doesn’t know about what’s going on in the rest of the brain. The CEO doesn’t know how to operate machinery on the factory floor for example, and doesn’t read all the emails sent. Most of the actual decisions happen without the CEO’s knowledge. So that’s us, we think we’re in control because we make a few executive decisions, and strut about looking important at meetings, but our sense of total awareness and control is largely illusion.
Some things that helped me realise that what I thought of as my brain was not my brain (some of these things due to PTSD, some due to BI, some I don’t know, it was all weird):
My emotions no longer bore any relation to what was happening, even to what I felt. Emotions happened to me, like a freak storm might happen to me. Panic attacks, mood swings (including intense rage), anxiety attacks and phobias would turn up out of nowhere and without seeming to have any specific triggers. They could all vanish as quickly too
I started developing bizarre paranoid delusions – that I was dead, that people from the future were following me etc. When I worked out these may not be truths, I tried to trace their origin back, and found lots of faulty wiring in my head. I realised that my brain was taking small, real events and constructing complicated and nonsensical interpretations of them, leading to intensely held beliefs. I was not consciously aware of this, until I had spent hours figuring it out; I had simply known that people from the future had put cameras in my bedroom in order to watch me.
For about a year, whenever I tried to explain something, the words wouldn’t be there, especially nouns. Missing nouns makes communication tricky, I would say things like, “Please could you pass the thing? You know the thing, on the thing, next to the thing, with the thing that looks like a thing.”
I would suddenly lose abilities that I took for granted – eg being able to recognise faces or smells. They would often return again later.
I no longer felt like I was myself, but couldn’t really work out why. My memories were there, but I didn’t feel attached to them anymore. I didn’t know how to act like me anymore. And mostly, I felt like an alien inside my head, the texture was wrong, the feelings were wrong. It was someone else’s head.
I came to realise the following (more on all of these in future blogs):
Emotions mostly follow set routines that are automatic and worked out in childhood. They are a little like programs on a computer that are always running in the background. We all feel that our emotions are automatic because they are a sensible response to a situation, but we each have different routines. For example, my instant, emotional reaction to realising someone is lying to me, is to get angry and confrontational, and that feels like a normal reaction, but other people might react by feeling guilt or doubt. BI and PTSD interfere with these routines, either with extreme or with blank emotions – these too feel completely normal and ‘right’ at the time.
Our brains sort through information collected during the day/week/lifetime, connecting pieces of information (from life, TV, games, daydreams etc) to other pieces of information, making sense of it. It’s happening all the time, but we don’t know about it. In order to do this the brain needs to scan the data, mix it up and play with it a bit to see where it fits – I believe this is what dreams are, and also explains why inspiration suddenly happens when we are concentrating on something else. Trauma can cause the cataloguing to get stuck on a loop, as the brain fails to move on from the event.
All images and sounds have to be processed by various different parts of the brain in order to be understood, this is different to the cataloguing process, it is instantaneous and enables us to see, hear and understand. Anything you see when you open your eyes is composed of complex information: colour, depth perception, texture are the more obvious details, but there are many more. For example, when you look at a cat, you are aware of fluff and whiskers, but you are also aware of whether you know the cat, whether you like it, whether you need to get it dinner. All of this is information that must be processed so quickly that you don’t notice any time between seeing it and knowing what it is. Any point in this process can get corrupted, either by emotion or damage, leading to the wrong information reaching our awareness.
Memory is complicated, it is not stored in just one part of the brain and there are many different types of memory. Understanding and communicating language is so complex, using a number of different types of memory, that many different things can go wrong and it is possible to lose a small detail of language, while the rest remains intact.
Who we are is not fixed. We are all changing slightly all the time, depending on mood, events, hormones, time etc. However, the sense of ME, the belief that I AM is very strong, it takes something drastic like BI, mental illness or drugs to shift it. Once shifted, the feeling is so unfamiliar that it can be difficult to process.
Important Note: something I’ve become aware of since I started writing about this, some of it comes across as quite extreme. I believe any illness can seem that way when reduced to the most dramatic events, the actual reality tends to be quite mundane. Most importantly, my life during these years was not all terrible, I still experienced joy, love and laughter. In fact, since many of the symptoms were kind of ridiculous in nature, I (and people close to me) laughed at them a lot.