The blueprint of you as a person is stored in your brain; the way you move, the way you think and your personality is stored inside your skull so it makes sense that damage to the brain will change your character. It may be a small change or a significant change, exactly how much depends on the location and severity of the injury. Brain injury has too many variables to be generalised, everyone is unique, and every Traumatic Brain Injury (TBI) will test that person’s relationship with those close to them in a different way.
On family and relationships
Trauma to the brain often means the death of that person as they were. Even though they are still there physically, you will never speak with that person with that exact personality again. I can't speak for a family member, but I can only imagine it is similar to the grieving process after a bereavement.
I'm careful not to generalise because every brain injury is different so I can talk only about myself, I do remember thinking that there was nothing wrong with me and it was everyone else with the problem.
From the moment the call to 999 was made I was the most important person, paramedics then consultants, doctors, nurses and the rest of the hospital staff were all working together to save my life. After that, I had solicitors, occupational therapists, a neuropsychologist, a speech therapist, a neuro physiotherapist and a case manager who were all working together to try and get me as near as they could to the person that I was before the injury. I got so used to everything being about me that it shouldn't come as a surprise that brain injury made me selfish. In fact, it wasn't until years later that I spent time with people with a TBI and started to imagine just what it might be like from the carer’s point of view.
I never intended to upset anybody, I just did! My whole reality had completely changed, I was having difficulties with my memory, my speech, my sight and my ability to think straight, there was so much to think about, and my ability to think was massively impaired! It seemed as if every day I was discovering that something else didn't work the way it used to, I was confused and depressed. I was trying to deal with more emotional trauma than I ever had to before when I was less mentally stable than I ever had been before in my life. Bearing this in mind, it was very unrealistic to expect me to act rationally. With so much going on in my head it was challenging to consider the thoughts of others. Being polite was so far down on my list of priorities and as a result I became very selfish.
The person with the TBI is going to change in some way, don't expect them to be the person that they were before. Accept that you have no idea what is going on in their head. It’s likely that they don't have a clue either because they will be massively confused. Be aware that just because they say they understand that is not necessarily the case as they may be covering up due to embarrassment or even trying to protect you from excess worry. Do your best to try and understand them and most of all, be patient. They don't need you to lose your patience, although they probably don’t know how to ask for it, they need your help.
At the time that I had my brain injury I was a student working part-time in a busy bar on Deansgate Locks in Manchester, so socialising wasn't exactly alien to me. In fact, I was hit by a car when I was on my way home after a night out. I had a lot of visitors in hospital, and I told them that as soon as I was discharged that I was going to return to the same student party lifestyle that I had before - I felt confident about that.
My first experience of being in a social environment, after my brain injury, came as I went to meet up with old workmates in the same bar on a quiet afternoon on a weekday. I was no longer in the calm, quiet space of the hospital ward but out in a public space, the very place that I predicted that I would thrive. However, something was different, and everything seemed to echo like I was in a swimming pool. I had been through this massive experience, and this was the start of my triumphant return, but I felt anything but victorious. Everyone wanted to talk to me, and I guess they were expecting this great story, but I just felt overwhelmed, and I kept getting distracted by the background noise. When I imagined myself in this situation, I didn’t think there would be all the other thoughts going on in my head that didn’t enable me to be present at the moment. I didn’t want to be social. I just wanted to be at home in bed. I got through it somehow but was disappointed having not lived up to being the socialite who chatted with everyone that I imagined I would be, this wasn’t a one-off and began to knock my confidence, and I started to avoid any social events.
“Why would anyone want me there? I am only a hindrance.”
I used to think, and that was the start of a period of depression for me. I remember my psychologist giving me an old textbook on head injury and in that I read more about head injury. The more I learned, the more I started to realise how serious brain injury was and the more depressed I seemed to get. My feelings of self-worth were pretty much rock bottom. I began to isolate myself, taking myself out of any social circle, and the longer I stayed away from socialising, the harder it was to restart. I was becoming obsessed with social media and seeing people having fun. In my head, everyone was so happy, and their lives were so much better than mine. I didn’t realise that most of these photos had a filter on them and how these were snippets of life designed to make their life look as fulfilled as possible and were not in fact representative of general life. Speaking with the benefit of experience, I am now convinced that this is not the way to go about things and that social isolation is something that should be avoided at all costs. I stayed out of a social circle with the intention of returning ‘when I felt better’ but left it so long that I didn’t know how.
Don’t try and jump in at the deep end and carry on as you were before and just because you may look the same as before and people expect you to be that person it does not mean that you are, you have had severe trauma, and things are different now. This does not mean that you cannot do anything anymore but rather that you have to learn to play to your strengths and do things differently.
Socialising can be overwhelming especially if you suffer from fatigue, as I do, so before any social event you should be well rested and not be hungry (unless you are going out for a meal!). A great tip I wish somebody had told me several years ago is that I don’t have to stay out for too long. I suppose I was happy to be anywhere and I would push myself to wait as long as I could. This meant I became too exhausted to have a decent conversation and so I probably wasn’t the best company anyway. It is far better to be brighter for a shorter time than simply to be there. You should aim to be the best version of yourself you can be rather than just to be there; quality over quantity!
Planning is one of the best things you can do, plan the event as much as you can. Where possible: stay out of crowds, away from loud music, favour natural light wherever you can and decide in advance how long you are staying for with an escape plan. This could be a friend or family member happy to escort you home if things become too much. Do everything you can to ensure you have the best possible time with minimum discomfort.
Don’t cut yourself off from society. Although it is often easier to stay at home in front of the TV, you sometimes have to push yourself. Keep social visits short at first but you won’t regret it, it is far better to be around people than to be alone in the long run. Look to socialise with others of similar interests as I found that I had to explain brain injury all the time often when I wasn’t too sure myself. Also, because talking about the brain injury all the time becomes so boring and quite depressing. Aim to get variety in your life. Take up a new hobby… as long as it’s not Facebook!