We welcomed a new member, S. He said that he wanted to meet people that understood where he was coming from. We all agreed that that was one of the main reasons why we all met together. He said that he had had a brain injury at birth. He subsequently had 2 head injuries. People tell him what to do but they don’t understand why he can’t do what they say.
T visited us after a long absence. She said that she had split up with her long-term partner, Ian. She’s living with her daughter, P, who also joined us. T’s response when C introduced herself to the newcomers was that it is important to focus on positives. It became clear that that didn’t make sense to C.
There was general agreement that our lives work very much better if we focus on positives when we can. However, there was also general acknowledgement that there are times when focusing on positives doesn’t make sense. It seems inappropriate to the impossibly and permanently nightmarish situation that the person has wound up in. What can you say to someone that says “be positive” in a situation that clearly has few if any redeeming aspects? Everyone agreed that people tend to be in a very negative place in the first stages after an injury. C finds herself in that place. What could she say? To agree to focus on positives would be dishonest and isolating. To disagree would be honest but even more isolating. We discussed why she feels stuck there at the moment.
It’s extremely difficult to come to terms with losing any aspects of our identity that we value. Human beings really hate loss. That effect is extremely strong. There’s lots of research evidence showing that the degree of dislike of losing money is much greater than the degree of happiness produced by gaining money. I won’t describe any experiment in detail but I’ll give you the main result. People rate the strength of their feeling on a 0-10 point scale, where 0 means they feel nothing and 10 means the feeling is maximally strong. In some experiments people are given money to gamble on a game, say £10. The game is set up so that one group loses £5 and the other group gains £5. They are then asked to rate on the 0-10 scale the strength of their feeling: the strength of their negative feeling in those that lose £5 and the strength of positive feeling in those that gain £5. I’ll make up the following results just by way of illustration: let’s say that people rate the strength of negative reaction to loss as a 7 and the strength of positive reaction to gain as a 3.
So, the strength of feeling about what people have lost is absolutely huge. They have lost a lot more than a few pounds, they have lost much valued skills, status, direction in life etc … all that latter stuff amounts to a loss of part or all of their identity. So, they keep looking back. They almost get themselves back there by imagining past experiences and competences. They feel good about themselves again while they’re in that fantasy. They are liable to fantasise about getting that lost identity back. Where did it go? It was so clear and so easy – I must be able to resurrect it somehow? I can almost touch it. If only I could just turn the clock back. No, that’s not going to happen. It’s gone forever. Their mood falls through the floor for a bit. Until the next time they can’t do something and that triggers memories of how things used to be. The cycle then repeats itself.
That magnetic backward pull of the past would be bad enough, but it’s made even stronger by the fact that the person has no alternative identity to look forward to. Before the injury, they were looking forward to doing X, Y and Z. But now, they can’t do X, they might be able to do a bit of Y and, yes okay, I can do Z but that’s not great and, to be absolutely honest, I’m still a nobody. So, if I don’t have anything great to look forward to all I have left is to focus on how good I was in the past.
Of course, nobody in the meeting had gone through exactly that experience. However, they’d experienced their own version of that horrible early phase of coming to terms with their injury. For example, C’s condition was due to a medical accident and we know that when someone else might be to blame it tends to increase the backward-looking pull of the past. Also, C has painful muscle spasms which considerably limit her mobility amongst other things – pain in the present also increases the attractiveness of the past.
Those that had moved on from that unpleasant backward-looking place wanted to reassure her that there would be a way out for her. They reassured her that the way forward was to build a new life and identity – one that worked for her and enabled her to like herself again. It’s hard building that new identity because your confidence is shot and it’s very difficult to see what you might possibly be.
Finding that new way involves developing bits in oneself that work perfectly well or to some extent. For example, someone that had a demanding job might change to becoming a house parent – their role in bringing up children might expand. That’s what L and L have done. Some people discover completely new skills. For example, Paul discovered that he had artistic skills that he could develop and become proud of.
It’s also extremely important to have support. Without that support, you have to find it. Usually relatives are hurting too and they’re wanting you to get back to being the old you, so they are sometimes liable to blame you for not coming up to that standard. That’s all very understandable, but the relative is only making life harder for themselves as well as for you. If they can work out how to support your small positive steps forward, then you’ll get there quicker and they’ll feel good about the fact that they’ve helped you, that they’ve developed as a person, and they’ll feel increasingly relieved as they see your gradual progress. Our headway group is there to offer a bit of that kind of support on the way.
R highlighted the importance of deciding each step ourselves. If we leave others to decide what we should be doing, then we’ll work on an identity of their choosing. It won’t be our own identity. We won’t be very inspired or motivated by it, so we won’t put as much effort into it as we would have had we chosen it. Also, following someone else’s lead can’t work because only we can know if we want to do X or Y. Each person is the only one that can know if X or Y kind of fits for them.
This creates a challenge. We need support from those close to us. They sometimes have good suggestions to make. On other occasions, their suggestions are way off the mark. Also, each person has a different perspective. Additionally, brain injury happens to whole families, so it hurts everyone – each different family member needs something different to deal with the cost of the injury to them. Finally, research shows that in discussions about conflict we don’t listen to each other completely so we often don’t understand each other’s point of view (though we often believe we understand). The evidence shows that that level of misunderstanding is greater in families dealing with brain injury.
So, what can be done about all of that? Well, the more family members listen to each other, the more they will understand. The more they understand what’s going on, the more they will be able to identify the things that need to be changed and the more they can work together as a team in finding workable ways around the obstacles. However, after all of that listening, the person with the injury will never be completely understood and, ultimately, they will have to make the final decision about each of their next steps towards the person that they want to become.
The next meeting will be at 1.15pm on Monday 13th August 2018 in Llewellyn Hall, Swansea Road, SA4 9AQ (Take the Gorseinon exit from Junction 47 of the M4, turn first left at the next roundabout, and Llewellyn Hall is almost on the immediate left, next to the church).