by Kate Boyer, Intensive Interaction Facilitator and Mentor
Did you know that over 350,000 people a year in the UK suffer an acquired brain injury? To raise awareness during Brain Injury Awareness Month, our colleague Kate shares the story of her injury, which happened seven years ago.
The very word traumatic fills me with dread but this is the definition of the injury I sustained to my brain. I refer to it as ‘my injury’. I have had to take ownership of it. Telling you what the actual injury was isn’t relevant. The fact is my brain was hurt, in such a way that parts of it will never be the same, it will not function in the same way it did before.
So as part of Brain Injury Awareness month, I will do my best to share with you how this life-changing event has affected me.
Putting logic into an illogical situation
It is almost impossible to put some sense into something which makes absolutely no sense, and that in a nutshell is how I felt. I couldn’t make sense of anything. Everything felt wrong, muddled and different. It felt serious; I knew it was serious. There was an overwhelming feeling of despair.
Being in hospital
Putting all the physical aspects of my injury aside, being in hospital and the things that went on whilst I was in there, has affected me deeply in ways it is very difficult to put into words, but I will try.
I was in the resuscitation area of the hospital for a long time, not that time meant anything to me whilst I was there. I am not sure if any part of a hospital is particularly nice, nice is a nondescript word, but I do know there are areas which feel somewhat ‘nicer’ than others.
The resuscitation area does not fit into one of the ‘nicer’ parts. The equipment in there; the sounds that equipment makes, the buzzing and bleeping, that constant, incessant bleeping. The comments uttered under the breath of the people in there, tones of concern, a sense of urgency, a sense of anguish. All the while that bleeping still there, always there. Then that bleeping changes to something else, a sound which heightens every emotion relating to fear you can think of, it penetrates every fibre of your being. Then nothing, just a blank, silent, empty nothing. That urgency, that rushing, that bleeping, the constant bleeping gone, all of it gone. Stopped, finished.
At the risk of sounding terribly dramatic, it might help you, the reader, to know that the previous paragraph was difficult for me to write. I had to keep leaving it to re-ground myself; some of those words heightened my emotions to a sense of high alert, I think it is referred to as ‘fight or flight’. All I can tell you is there are still moments now when it feels as raw as it did back then, nearly seven years ago.
The very best care
So, let’s move on then and I will attempt to lift the tone somewhat. I have had and still have the very best care from our National Health Service and this is where I plug the Community Head Injury Service and Headway. Two organisations who have given me support that only they could give.
Coming home and picking up the pieces
This was such an odd time, it truly was. I needed to be cared for in a way I had never needed before. My daughter (in her twenties at the time) no longer lived at home. Our roles reversed and when I think about that now, it hurts. I will be forever thankful for her resilience but I know they were dark times for her as well, and that wound is still raw for me. I am not sure it will ever fully heal. Somehow we made sense of the situation we found ourselves in and moved forward in the best way we could.
Slow but positive recovery
I suspect you will be wondering about the effects of a brain injury and what they are likely to be. These are obviously unique to each individual and each person’s journey can look very different. I will try to tell you about mine. My recovery was slow (at least I thought it was) but it was positive, even in the very early days. My thoughts, words and movements were muddled because my brain was attempting to rewire but to some extent it did just that. I am proud of my brain and thankful to it for what it has managed to achieve.
Physical changes
I guess listing these is the best way forward. I do hope you aren’t bored, please bear with me!
I’m spinning around
Did you know we have crystals in our ears? I didn’t and the whole concept of it fascinates me. These tiny crystals act as our spirit level, unfortunately mine got dislodged and so my spirit level was definitely not level. Just sitting up in bed each morning took a few attempts and the need for a bucket close to hand. Vertigo is utterly miserable. To re-set my crystals, I was ‘prescribed’ Brandt Daroff exercises and they are absolutely brutal. No other word, brutal. I did these manouvres three times a day every single day for weeks. I persisted because the success rate is high but I cannot put into words what it felt like when I did them other than sick, very sick. However, there was improvement quite soon and this motivated me to keep going with them.
I gave my hearing aid a name
I have lost hearing in one ear. I have pulsatile tinnitus, which is the sound or feeling of our own pulse. It is peculiar and has been with me from the day of my injury. I can only liken it to the noise on a scan during pregnancy; that whooshing of the baby’s heartbeat.
I wear a hearing aid in the affected ear. I call my aid Elsie (doing that seems to make the need for one feel better) and obviously this supports me to hear better. While it magnifies external sounds, it softens the pulsatile tinnitus.
Enjoying food is hard work
I have lost all sense of smell and this has impaired my sense of taste. I am not going to say much about this because I wrote a whole piece on it for Eating Disorders Awareness 2025 which you can read here.
For the point of brain injury awareness though, it is worth mentioning this has taken and still takes a lot of effort to live with. I never ever thought enjoying food could be so difficult. I thank all things good for the occupational therapy input I have had, as well as the neuro psychology support.
It's all in the coordination
My handwriting skills are poor. To be fair, I have never had the best handwriting but it was legible. In the early days after my injury it really did look as though a very young child had written it with a non-dominant hand. It has improved a lot but still often illegible, even to me! I am told it is due to my brain and hand not coordinating properly. I can type well though, so not all is lost.
Physically painful
My leg muscles cramp. This isn’t nearly as bad as it used to be. I used to wear leg sleeves but I haven’t needed them for a long while now. I have learnt that exercise helps as does drinking lots of water. There are times when those cramps hit from nowhere and they are incredibly painful. This is muscle spasticity, which I think is an unfortunate term and I really don’t like it, to me it is just my legs being my legs. It is simply due to the messages from my brain to my muscles get a bit muddled up.
Thermostat out of sync
I have a very slow reaction to heat and to cold. By the time I recognise I am too hot, I am way too hot. My hands and lips can turn blue with cold before I actually feel cold. It seems as though my internal thermostat is not in sync with my brain passing me the messages.
Eating and drinking
I have no sense of thirst and little sense of hunger. I need constant prompts and reminders in place to ensure I drink enough and eat enough. In my wildest dreams I would never have imagined I would need prompting to eat!
Number one enemy
Tiredness is my number one enemy, and most likely my tiredness is the number one enemy of my husband too! It is very hard to explain how this tiredness feels but I will try. It is referred to as ‘mental fatigue’ or ‘pathological fatigue’ and when it hits I cannot focus, I cannot hold attention to any one thing and worst of all is when this hits, by the time it has got to this stage, I cannot recognise I am over tired and need to rest. It isn’t a physical need to rest, it is my brain’s need to rest.
It has taken a lot of support and strategies for me to become tuned into myself, to recognise what I refer to as the ‘fizzy’ feeling. It is still work in progress.
Annoying but interesting
I have some difficulties with memory. Aside from the annoyance of it, I find it so interesting that names of people I knew pre-injury I can remember fairly instantly and yet names of people I have met since my injury, I find very difficult to remember. Isn’t that odd?
It is really hard for me to retain new information. I used to be an avid reader, I would easily read a book in a day or two. These days I just can’t remember what I have read, no matter how interesting it is. I tried audio books but I can’t keep up with them. I’ll tell you something though, I am hugely thankful for the fact I can still physically read. I have met people in neuro rehabilitation who have lost that ability, all of it. So yes, I am grateful.
Apologies for interrupting
I interrupt whilst others are talking and I find this incredibly frustrating, embarrassing and upsetting. I have tried all sorts of things to get past this and nothing really works 100%. I now have some excellent strategies in place. I hold something when it is not my turn to talk, ironically what I hold is one of those stress ball things which actually looks like a brain. I find this very funny. Whilst out with friends and family, my husband will gently put his hand on my back using some firm pressure. Just enough for me to know he is giving me a signal. That is my cue to rein myself in a little; it works a treat. So, if you are one of the many people I have interrupted whilst you are talking, please accept this as my apology to you.
Maybe a touch of vanity
After my injury my eyelashes and eyebrows fell out. It was so weird! My lashes came out a few at a time, they would be on my pillow and I was surprised how long an eyelash is, particularly as I never thought mine looked long. They grew back fairly quickly, although now mascara irritates my eyes too much.
My eyebrows have been more of an annoyance. I am of the generation who vastly over plucked our brows, and so I had sparse brows to begin with. But what I did have fell out and have never really grown back properly. I have never been big on make-up and certainly not adept at applying it. I attempt to use one of those brow pen things, and all these years later I still can’t do it correctly. They never look even!
My greatest challenges
Whilst the physical difficulties after my injury have taken a lot of getting used to and to some extent are still work in progress, the other difficulties have been my greatest challenges.
Presenting well
I know I present well and some of you reading this who know me may well be surprised by some of what I have said. Indeed, during some of my many assessments, I have been told exactly that, I present well; I am very happy about that. I’m not sure I like the term ‘masking’ but that is what I do and actually I am quite good at it. It baffles me how I find some day to day things very difficult but I am really good at covering that up. My Neuro Psychologist and actually other professionals too, told me that the efforts I need to go to in order to complete some day to day tasks far outweighs that of the task itself. There is an irony in there somewhere.
You may think I am a wordsmith
I have always been an excellent writer in terms of putting thoughts onto paper, good at descriptive writing and confident with my skills to write a letter or even a poem which is meaningful and interesting to read. Many people still say they admire my writing and are envious of my ability to write as I feel. If you are agreeing with that as you are reading through all of this, then thank you BUT, I really want you to know I am nowhere as articulate as I was pre injury. I really struggle with this, I struggle with it more than you can probably imagine. My gift, my skill, my passion, call it whatever you wish to, has been taken from me.
Please don’t see me as being ungrateful for what I can do, I’m not but I do feel cheated. Cheated out of what I could do and do far better than I do now.
Emotionally reactive
I can be emotionally heightened in the blink of an eye. I have always been sensitive to others’ emotions and had an ability to emotionally attune to others but I was able to channel it, handle it so to speak. Now I feel those emotions in a way I never thought possible. It cuts through me like an electric shock.
If I see somebody upset, hurt, troubled or in distress I am compelled to step in but physically can’t, I need to help, I need to know they are being cared for. I get stuck and can’t move away from it, I can’t leave them.
I have to live with myself feeling like that, live those emotions which I cannot inwardly control. That is tough, not just for me but for my family, my friends and my colleagues. Even for the stranger in the supermarket who may see me in a state of emotional reactiveness. If you feel you want to offer me words of comfort around this, that is kind of you but please don’t – that alone will cause me to emotionally over react. I think you get the point I am trying to make here, at least I hope you do!
A life of lists
I love a list, I have always loved lists. I like writing down what I have to do and ticking it off as I go, it is satisfying. There is a difference though between liking a list and having to live your life by them.
Things such as remembering to drink more because the weather is warm, to put gloves on because the weather is cold, to eat at sensible intervals, to wear a coat; such normal, everyday things I may forget if it is not written down and backed up with a visual prompt. Believe me, it can be exhausting!
Funny but not funny
I have never been that good at understanding jokes, I have always being quite literal in my thinking. Now though it is just so black and white. My husband is a natural joker, his play on words is actually very clever if you get it, which I often don’t. We do laugh a lot about it, not at me or my injury, but we laugh about how his jokes are just completely lost on me! Those moments are priceless to us as a couple, the making of memories, if of course I can remember them!
Secrets and lies
If someone begins a conversation with ‘can I tell you something’, I explain they shouldn’t entrust me with a secret. I cannot guarantee it will stay a secret. I have strategies in place to avoid me repeating something I have been asked to keep to myself, and my strategies do work (most of the time). I will write myself a note which is kind of in code to remind me it cannot be shared, however most of the time I have no clue what the note is about because I can’t remember what the secret was! There is a winning combination in there somewhere. I would also struggle to tell a lie and keep the lie. Just too confusing so best I don’t go there. Sounds good doesn’t it? Not so when someone has spent a fortune on a new outfit which they really don’t look good in and they ask me my opinion! I get round that by taking the question literally, I comment on the actual outfit, do I like it or not? Easier to get round that one!
Hospital visits
These are awful, they really are. Not because people don’t look after me, not because I don’t receive the care I need (I do and always have done), not because I have any painful procedures. Quite simply I cannot cope in that environment; it comes back to those machines, that incessant bleeping noise, the sounds in there, the things spoken about in there and lots more besides. To cap it all a hospital is absolutely full of unwell people, upset people, and anxious people, all people who need taking care of. Put me into that mix and I am a complete liability. It is painful in every sense of the word. Painful for others to see and painful for me to feel. End of.
This is where reasonable adjustments come into my journey and I promise I will cover this further on. I do hope having realised there is more to read, you are not losing the will, maybe go and get a coffee or something and come back to me in a while.
It is ok to not be ok
I had 54 years of being me before things changed. I knew myself, I knew my likes, dislikes and me, I knew me. Of course I am still me, but some things are different. Some things can hurt more, some things bother me less. There are things I have to do differently because I just can’t do them as I used to. It has taken time and I need more time to find my way with myself. I have accepted what happened, I have accepted this is how I am but acceptance and being ok with it are not the same. It is ok to say when it isn’t ok, there is nothing wrong with that.
Keeping safe
There are times when I am not safe and I rely on others to keep me safe. I don’t like that but I want to be safe, we should all be safe. In any emergency situation I would be no use to anyone, in fact I would be a hindrance. I would not be able to get myself to safety. I have to try not to overthink this because I would work myself up into a frenzy and there is no benefit to that, none at all. I cannot smell smoke, I cannot smell gas, I cannot smell burning and the sound of a smoke alarm would put me straight into that state of fight or flight and I would most likely get completely stuck.
So, I have a ‘brain injury identity card’ and when that was first suggested I was insulted, completely insulted. A label, a card to identify my injury, not me but my injury. Of course that isn’t how it is, not at all. This little card is just tucked into my phone case where it would be seen and where I know it is. I can just hand this to someone if I am in difficulty. Proof of how far I have come is that rather than indignation, I now feel reassurance from that little card. Knowing I have it with me is comforting.
Those all-important reasonable adjustments
I really do hope you have stuck with me and are still reading! I am nearly there now so won’t keep you much longer.
This is the part I want you to take something from, one of the reasons I have saved it until almost the end because hopefully then it will stay in your mind for a little while. Reasonable adjustments for me have made the difference between being able to do something or not, to see something through or not, to achieve something or not, but more importantly able to live a meaningful life or not.
That may sound extreme but it is true. There are obvious things which probably come to your mind: my working hours, my working days, my actual job and how that looks now. Yes of course adjustments have been made there and they are extremely important. I function better in the early morning so I start early and finish early. I have a day off midweek: my Neuro-Psychologist calls it ‘wriggle room Wednesday’, it is a day to reset, a day of doing things which do not require complicated thought processes. A day for my brain to rest.
There are other things which seem to have naturally evolved over time. The standard weekly fire alarm tests are done on my day off. I have my own, individualised personal emergency evacuation plan in place. What humbles me though are those subtle adjustments; my line manager completes my appraisal in large font, in bite sized paragraphs because he knows I can absorb information easier that way. If a car alarm sounds in the car park, a colleague will subtly close the window and maybe pass me my ear defenders. Sometimes no words are needed, it is that person-centred approach which keeps me grounded, keeps me where I need to be and keeps my emotions where I feel comfortable.
It is not unreasonable to ask for reasonable adjustments, it really isn’t. If you or anybody you know needs them then ask, it is ok to ask.
So many times adjustments have been made for me and sometimes I haven’t needed to ask for them. The Dentist who wears his ordinary clothes with a baker’s apron on rather than his scrubs (yes I am being serious), the Nurse who turns the blood pressure machine screen away so I don’t see it and she turns the sound off, the Neuro Psychologist who listens to James Morrison with me at the end of a therapy session, the Occupational Therapist who comes into Costa with me to reassure me about the machine which heats food up and bleeps. These adjustments have given me the opportunity to do ordinary things, so many ordinary things are important things.
Silver linings
Thank you for sticking with me, it has taken a lot of thought processes for me to put this together but for the purpose of raising awareness about brain injuries, I felt it was important to do. I owe it to my fellow ‘Brainies’.
So has there been a silver lining to the cloud which hung over me for so long? That’s hard to answer fully but to some extent yes there has.
I have been overwhelmed and humbled by the kindness shown to me; the obvious outpouring of kindness but also those subtle acts have touched my soul. The stranger in the supermarket who could see I was struggling with a change to where things were on the shelves, the postmaster patiently waiting for me to find my words which had momentarily deserted me, the dog who nuzzled my hand right at the moment I needed bringing back to the here and now, the man who walked past me but turned around realising I needed help because there was a car alarm sounding. I could go on and on but I hope what I have told you gives you a fair idea of what I am trying to convey. I love how my colleagues, friends and family all have my back without being on my back. That alone matters, it matters so much.
Through neuro rehabilitation I have met the most incredible people, people who have faced unimaginable challenges, but people who have made something of the pieces they were left with. Somehow they have put that puzzle back together, it may not fit as it did but it kind of fits somehow. I admire those people.
That ridiculous saying ‘live each day as though it is your last’, how can we possibly do that. Nobody would go about their normal day would they? Well, I like a normal day, I like just ticking along. Ticking along is good and I am grateful to be able to tick along. Maybe more people should be happy to be able to tick along. We all have good days and we all have not such good days and that is ok. Whilst living each day as though it is our last is not feasible, we can live each day being kind and thoughtful to others. We don’t know what others might be going through and we should never make assumptions about that. Let us just be kind, always be kind.
Last word
I do like to have the last word, literally I do. It gives me closure. So I leave you with one final comment, actually it is a quote by Madame K Poetess…
You never return to being who you remember before life was turned upside down. But you can embrace who you are meant to become in the turnaround
