How I explain what living with a brain injury feels like

There are so many names for a brain injury; TBI, stroke, brain damage, brain tumour, concussion, PCS… and yet actually describing what it’s like to live with THE most important organ in your body not working the way it used to, is exceptionally difficult. As most of the people we are conversing with haven’t had the bad fortune to experience a brain injury themselves, it’s hard for them to put into context what we are trying to outline. So often I hear from other survivors who feel totally misunderstood by their family and friends who unintentionally continue to diminish what they are having to deal with. Unfortunately, as a society we have been doing this for a long time. Women take the mick out of men for the “Man Flu”, by assuming that they have coped with worse symptoms than the man is suffering with. Men blame a woman’s heightened emotions on her “time of the month”, insinuating that her response doesn’t need to be taken seriously because it’s only a temporary effect due to her hormones. Many of us have worked somewhere where there has been a member of the team who calls in sick more than the average, and although the person may be well liked, there’s still an underlying sense in the team that they are just being a bit lazy and a let down. However, as no one can actually physically feel what an individual feels in a moment of time all of these examples are where people are downplaying the peoples health condition without merit to do so. This is psychological invalidation, even when a person doesn’t recognise that they are being dismissive. Often people need to see or hear it from a third party to be able to consider that it’s not just one person being “overly dramatic”, that it does actually happen to other people too. That’s why I’m going to describe just a snap shot of what living with a brain injury is really like.

Thinking can be like walking through treacle.

If you’ve ever sat an exam and afterwards wondered how you answered any of it because now you’re so shattered you can’t remember even the simple answers, you’re on the right track to what most days can feel like for a brain injury survivor. Women who have had “baby brain” or “menopause brain fog” should be able to relate  to this. Men, the only other comparable example I can think of for you is trying to work with the worst hangover ever, the type where even putting in your password in your work computer feels like the trying to spell “cataclysmic” in Russian.  Whilst these examples are scenarios which will pass and clarity will return, for us clarity is but an occasional visitor. The most frustrating part is that we know the answer is in there and when we work really hard we can find it, but it’s exceptionally draining.

Having a memory which has more in common with Swiss cheese.

A persons memory is always changing as your brain holds on to the things that you use more often, and throws away the memories that you never look to anymore as we don’t have an infinite capacity for them. So we have all experienced a time when someone brings up a scenario from the past that is as clear as if it was just yesterday for them, but we can’t remember it all.  Take that feeling and that is what it feels like when you’re told you have told the same story 3 times in the last hour because you don’t remember that you’ve already told it today.

And yes everyone has done that thing where you walk into a room and ask yourself “what did I come here for?” because you’ve forgotten what you were doing, but believe me that it just the tip of the iceberg of what dealing with a damaged memory is like. In Clearly lost, the snag of brain injury I described what it was like to get lost in my own town. I just couldn’t remember how to navigate between different locations and it took me ages to achieve what I’d gone into town for. It was like when you visit somewhere for the first time but the map isn’t clear and the GPS on your phone isn’t working. You know you must be sort of in the right area but can’t figure out where you’re going wrong.

Planning any social activity means blocking out the whole week.

Fatigue is debilitating and it isn’t just about whether you had a good nights sleep or not. Because an injured brain is having to work so much harder to do even the simple things, social events drain us much faster than other people. Trying to follow the conversation/s, dealing with a different location, bright lights, background noise, it all adds up and we struggle to filter it out the way other people do. I recounted a disastrous experience I had at a restaurant because of these things in Light and noise sensitivity after brain injury and how that put me in an awful mood. I then was good for nothing for days later because I was so exhausted all the time. Believe me, I was ashamed at my behaviour at the time, but there wasn’t anything I could do about it. So if we seem moody and antisocial, please don’t take it personally.

There are some things that can be extremely difficult to do due to extreme weakness.

Unless you’re ambidextrous, most of us have a dominant side, with the other not being as strong or coordinated. But when I say I have weakness in my left side following my brain injury I’m talking about something much more severe than that. A few times I have tried to indicate what this can translate to and affect my everyday life, but I recommend Held back by weakness from brain injury  where I explains how I couldn’t even open my front door! Imagine that, being a prisoner in your own home just because the nerve damage it you stops your muscles from being able to transfer enough force. Or how about not being able to ride a bike because one leg is not able to peddle and you become unbalanced. That’s what we mean by weakness, not unfit coach potato weakness.

Emotions can be sudden and more intense than we are able to handle.

In Unstable emotional lability after brain injury can be tense I outlined how our responses to situations can be disproportionate, and nearly 7 years after my accident I still have these moments. These days I am able to recognise that the situation doesn’t warrant the scale of emotions that I’m experiencing, but it’s still a challenge to calm myself down. Recently I was totally livid about something so miniscule that I knew I had to go walk it off. But it was 1 o’clock in the morning, so rather than wonder off in the dark, I did hundreds on circles in my tiny garden with the security light behaving like my spot light. (Sorry to my neighbours if I woke you up and confused you.) It still took about an hour for the episode to pass. All the while I was telling my concerned partner how I understood I was being ridiculous (I was so embarrassed about how stupid the thing was that I wouldn’t even admit to him what had upset me so much) and yet I was still fuming.