Brain injury and personality

[Boudica]

Hello peeps,
Has anyone out there sustained a traumatic brain injury? When I was only 18months old I sustained multiple skull fractures. I lived in the country and was sent down to hospital where I had an x-ray and stayed for observation for a bit. However, in those days they did not have the scans they have now, and I was sent home to carry on my life without any treatment or intervention.

Fast forward 30 years and I found out from the optometrist that I have double vision, so that if I am not concentrating or I am tired I see you with two heads while you talk to me. This was not picked up previously as I never knew there was a different way to see things and my brain mostly manages to edit the images so that I can function to do things. The optometrist believes that it was a result of my childhood head injury. This led me to believe that it is likely that I sustained an amount of damage to my brain that I had to adapt to growing up.

I was always a top student in school, so I think intellectually I was okay. However, my Grandmother always said that my personality changed after the injury, and it has left me wondering who I would have been if I hadn’t sustained the injury and questioning which parts of my personality are me and which aspects of myself are some kind of damage. I have struggled my whole life with anxiety and I am socially awkward and I forget names and sometimes faces. I have never been very good at converting thoughts into speech. Are these things me or are these a result of something broken in my head? Does anyone else have a similar experience where you don’t know if who you are now is your natural self, or a weird Frankenstein creature that was borne out of injury? Because of my messed up vision, I find I question my abilities, my personality, the way I relate to other people.

[Sophie_M]

Hi Boudica,

Welcome to the forums, we are so glad that you've taken a big step in sharing your thoughts and feelings here with our wonderful community. It sounds like you've had some major experiences around the brain trauma that you've described and you're trying to make sense of the subsequent symptoms. I'm not sure if you've had an updated medical/spcialist assessment? That might provide further information, otheriwse there's a possability that someone from our lovely community may have some kind words and widom to offer you. 

So remember, if you would like some help finding mental health support as you've mentioned subsequent anxiety and social awkwardness, we would recommend that you get in contact with the Beyond Blue Support Service. They are available 24/7 by phone on 1300 22 4636 or on Webchat 1pm-12am AEST on our website: www.beyondblue.org.au/getsupport  One of our friendly counsellors will be able to talk through these feelings with you and can offer support, advice and referrals. Keep us in the loop if it helps!

[geoff]

Hello Boudica, thanks for coming back and yes I've also had TBI and my optometrist has given me prescription glasses for driving as I also see double and he said he can't do any more to help me, but my eyes are far from being anywhere near 20/20, he suggested going to see a neurologist, but after spending an enormous amount of money, which I haven't done, all they are going to tell me what I already know, they will not be able to help with my eyesight.

I have never been very good at converting thoughts into speech, although it's different when I'm writing, then I can take my time, but everything you've said I totally agree with.

Do you have epilepsy, I do as a result of an assault by a couple of bikes, and my personality has certainly changed over the years, perhaps I may have been strong enough not to have depression and/or anxiety which has affected my life, and I definitely know as my doctor told me, that by drinking alcohol will eventually make me keep falling over, now I have to use a walking frame to get around.

I've been told, not by my doctor, that I shouldn't be driving any more and haven't for quite a while, my son has disconnected the terminals on the battery and locked the garage door.

I am deeply sorry that this has happened to you because I know how much it has affected my life and I'm sure it's no different with you, my heart goes out to you.

Hope to hear back from you any time you are available.

My very best to you.

Geoff.

[Boudica]

Thanks Sophie_M, but I am okay really. It perhaps wasn't clear in my post that the realisation of my vision and brain injury was some years ago. I just wanted to use the opportunity on here to find others to compare experiences, as it is still part of me and I never really will have answers but nice to find people who understand. Although I have had some pretty dark times previously in my life, I seek this forum now as a level of protection and support from the darkness, because I know I am in a vulnerable place now with all that is happening in my life and don't want to go down that road again, so it is part of my prevention plan.

[Boudica]

Hello Geoff, thanks so much for your reply, it is nice to speak to someone who understands.

I can see clearly, I just see double, so if reading I see one paragraph on top of the next paragraph. I am a student at the moment, so lots of visual tasks, but I have glasses with a prism now, so that helps. I have finished my degree but doing an honours project and reading is so tiring. I get despondent when I have work that need finishing but I just can't cope with more reading (I also do mapping tasks in my line of study which are intense for someone with double vision). I have not disclosed my sight challenges to my professors as I don't want them to think of me as incapable. My optometrist did not ever give any hope that anything can be done, so I have not tried.

I drive with no problems. It seems a bit rough for your son to impose non-driving upon you, how do you feel about that? I feel like my life would be over if I couldn't drive, I would lose all independence and have to give up my dreams of moving back away from the city. I am a very cautious driver, and I have never had an accident.

I am sorry to hear you have epilepsy, I have known a few people with it and know that it can really be a hard thing to live with. Luckily I do not have epilepsy.

Yes, I am so much better at explaining myself in text, thoughts flow to written language easily for me. I can talk to people easily about practical things like gardening or weather. But converting more abstract theoretical or emotional thought into speech is really hard and I cannot speak for very long, as I find it fatiguing. My ex-partner use to say that I do not give enough verbal feedback and it made him feel lonely as he never knew what I was thinking, and I wouldn't really respond to what he said in a way that satisfied him. So I really don't have any confidence in being able to respond to people correctly.

It sounds like you had a really traumatic experience. How old were you when it happened to you? I think it would be really different to experience a brain injury as an adult. Was there a definite change, a before and after? For me I have never known anything different, as I was too young to know. Perhaps because I was so young when it happened I have adapted to it. I think though, that it impacted vision, speech and my ability to read social cues effectively. I think I have learned to hide my deficits though, I can mimic social behaviour to a degree but sometimes feel like I am a puppet.

[geoff]

Hello Boudica, thanks for getting back and yes it is really good that someone else knows what we're saying.

I have double vision when driving so I need glasses, they have also have prisms in them, as one car turns into two, the glasses rectify this thankfully and the reason my son doesn't want me to drive is the last time I did, I fell onto the road trying to get my walker out of the boot, my big shoes got in the way and I tripped over, needing me to be taken to hospital.

You need to remember that people need to wear glasses for specific reasons, so your professors shouldn't complain about you having to wear them, so please don't worry.

I can correspond better by writing, when I'm talking sometimes people scratch their head wondering what I'm trying to say, I get tongue tied, but writing it's so much better.

I was 29, managing a hotel and had barred bikies for their misbehaviour and the opening night after renovations they came in a pack, when I was talking with them, everything seemed to have been sorted out until I turned my back and then they hit me over the head with bottle/s, fell to ground etc.

It certainly changed my life in all aspects, that's another story, but with being young you slowly learn to adapt, although it really is most unfortunate that you have to struggle and hopefully I can help you, as I'm sure there is much more to your story if you want to share because everything you have told us has happened to me, so please I'm here.

Can I just say that I start very early in the morning and I'm about to log off, but I will definitely be looking out for you first thing in the morning, about 12.30 am.

Please reply as I know every day is different than the next, I know this happens to everybody, but with TBI it's not the same.

Please take care.

My best to you.

Geoff.

[Boudica]

Hello Geoff,

What a brutal thing to happen, I am sorry, it must have really shifted reality for you. Do people around you know about what happened to you?

I guess I don't want people to know because I feel then they would observe more closely looking for evidence of deficits. If people are unaware and not looking too closely at me, I feel I can pass for okay. If under close observation I feel like people would be able to see the cracks and the struggles and the wrongness. I have never even told family members that I feel I have these deficits. My family were always full of criticism of everything wrong with me growing up though (I was not bubbly, chatty, affectionate like a girl should be, instead I was quiet, intense, reserved). So maybe people can see straight away there is something not right in me, and I am just kidding myself. How do you feel about people seeing you struggle?

I do wonder about personality though. It is hard to know what makes a person who they are. I have struggled with anxiety and depression my whole life, but this may have nothing or everything to do with tbi. I had a very unstable childhood with a lot of upheaval, periods of family violence and a hoarder mum with mental health issues. I guess it is the same for everyone. We can only guess at who we would be had we been born to a different life.

I am curious to know more of your experience, but only if you are comfortable. Did those close to you notice a difference in you after? Do you think it impacted your ability to relate to people or function in relationships? How did you reconcile yourself to the change, and feelings of loss?

I have no problem with wearing my glasses, but they don't really align the images correctly, as although it brings them near, one is very twisted diagonally. That is why I am still really having trouble with visual tasks like mapping. I end up in a bizarre hell of many overlapping lines, and work with tears streaming down my face (from eyestrain not sadness).

Thanks again for your time and attention

[geoff]

Hello Boudica, I am in full admiration for you for having to grow up with TBI and not even knowing the extent of what this injury would cause and people forget the damage it has done to us, even when we have made a mistake, not duly, but because of the TBI, we aren't given any latitude unless we need to mention what has happened to us beforehand.

It's not that all we want is sympathy, and an example is that years ago I used to fall through windows, glass tables and people naturally thought I was drunk, but it wasn't that, I was having seizures and living alone, ending up in very precarious situations, so how can you explain this to anyone.

Anxiety and depression do have a great chance of developing in people with this injury and after a head injury, negative moods like sadness, anxiety, or irritation can drag on, making our families mistake our emotional symptoms for personality change and can affect our life.

I realise this happens to other people struggling with depression which causes our ability to think, communicate, and to connect with other people, but when you add TBI our problems seem worse.

To have multiple skull fractures as you did, must have been something that your family didn't know about what was going to happen and certainly didn't appreciate what damage this would cause, I am so truly sorry for you.

People may have noticed a difference in me, but I was never told, if I forgot something or made a mistake it was taken on face value, that is just as I would if I didn't sustain TBI, there was never any latitude, people just expected me to the same person as I was before.

It has definitely changed my life, but that's what is kept to myself as there is no gratitude.

Great talking with you.

Geoff.

[Boudica]

Hello again Geoff,

Thanks so much for telling me your story. I feel that I got off lightly compared to you with your epilepsy, I'm not sure how I would cope with that loss of control, it must be devastating. I have had a seizure once from an overdose of medication and a lack of control of your own body is just terrifying. You must be a really strong person to get to where you are today. I think back then there was not really an understanding of TBI, unless it was obvious through severity eg. intellectual disability or paralysis. I was actually very lucky as I fell from the second story window of our house, so the fact that I survived is amazing in itself.

Nice talking to you 🙂

[geoff]

Hello Boudica, to fall from a second storey window is frightening in itself, that must have been horrific and such a scare for you as well as those who were there, a terrible experience, and so pleased you can relate your storey back to us, not that I'm sure is one you want to remember.

Even though this injury was some years ago doesn't make it any easier for you to try and cope with, this is something you wouldn't want anyone to suffer from, because you have to suffer the consequences from it for the rest of your life, something only a person with TBI would know about.

The ramifications from it change your life forever, people say we can learn to live with it, but hey, it's not as simple as that, as so much actually changes which we ourselves only know about.

What's happened has happened and at the moment nothing really can be done to change this situation, you have to suffer from 4 broken skull fractures which will always show on any x-ray, just as the blood clot I received on the brain still remains and supposedly I have had a minor stroke a while ago, not that I noticed it but the last CAT and MRI scans have shown this to have happened.

I feel OK and don't have any signs thank goodness.

The epilepsy I have is 'grand mal' but thankfully controlled by medication, but I would be horrified to see someone fall two stories, it would be so shocking to be able to know what to do, my heart is all with you.

Please reply as it's not going to be easy for you at all.

My very best wishes.

Geoff.