Being British often means having a stiff upper lip in tough situations, and trying to say the right thing so you don’t cause offensive. I would definitely say that I fitted into this culture and actively tried to be a good example. I really did feel this was the best way to be, and I still think it has merits and find I naturally adopt it . But actually it’s not always the best answer. I wanted to shout “Don’t guess that what I need is for you to be polite, just tell me the truth.”
After my brain injury I initially couldn’t recognise the changes in my personality. So I would ask people what differences they saw. But many people would assume that any “negative” feedback would offend me so they told me I was fine.
But with the polite British culture, how could I explain what I need this time is pure honesty. I believed that if I could identify what had changed I might be able to work on it to get back to being me. I didn’t have a plan for how I intended to do this but I’d always believed that if you want something enough, and you’re prepared to put the effort it, you can achieve it.
So it was a long time before anyone dared to tell me that having a conversation with me was like I was speaking via satellite with a time delay. They would be able to see the thoughts on my face and then I would finally speak, and even then it was a bit slow. For me though I felt I was answering immediately like you would in any natural conversation. This happened because my speed of processing had been hugely affected. Deciphering what they were saying and replying was taking so much longer, but I wasn’t aware of it.
I wanted people to admit that they could tell I wasn’t OK.
Instead some tried the positive approach and would try to look at it all from the brighter side of life. But all that did was make me feel guilty for “wallowing in my self pity.” That I should be using that British stiff upper lip to put my feelings aside.
“You’re lucky, it could have been so much worse!”
Just because I came out of that accident in one piece and I was able to walk unaided, (eventually) it doesn’t mean I felt I was lucky to have a brain I couldn’t trust anymore. Whilst I understand that I could have had a physical disability or even died, when your brain isn’t behaving normally it’s difficult to feel lucky. Particularly as you don’t know how long your recovery is going to take and what the future looks like.
“You look fine.”
No I don’t! And I knew I didn’t. My reflection looked different, it was in my eyes. It looked like no one was home, and I’d always had very expressive eyes. I’d always been proud to have inherited from my Irish Mother, “the Moynihan look.” This was the look that would be thrown and even without words you knew your goose was cooked! Anyone who knows an Irish woman knows what I’m talking about. But all emotions were easily displayed through my eyes which I hoped made people see when they were welcome. It was more like looking at a fish than my reflection.
“Try hard and keep practising.”
Wise words, and of course it is the best course of action. But I was so fatigued that concentrating on anything took so much effort. I am guilty of being lazy at times, but this is different. And even if I had energy were was my motivation? Some days I just didn’t have the drive to do anything, and that made me feel terrible because as I said before, I believed if you want it and put in the effort it will happen. So that meant it was my fault that I wasn’t better.
“I’ll do that for you, you go sit down and rest.”
It’s so kind hearted of people to try to help and do little things for you when they see you struggle. But as I was struggling with my confidence with simple things like carrying 2 cups of tea, the only way I could build it was to see I could cope. Living with a brain injury you have to take each day as it comes. Just because you could do it yesterday it doesn’t mean today you’ll do so well, and visa versa. It can be challenging to be patient with myself so I understand it’s can be hard for others to be patient, particularly in today’s super fast world. But I can be my biggest enemy so sometimes I need others to just have my back, not take over.
However, I realise us survivors ca be difficult sometimes. So huge respect to carers. Read Support Carers where I explain how their lives have been turned upside down too.
15 replies on “Don’t guess what I need – Words of a brain injury survivor”
Sometimes when I fail or struggle with a simple little task, for example, opening a package or wrapper, I get terribly frustrated and beat myself up over it. I find I have to slow myself down and try my hardest to curb my impatience. Shouting and complaining about inanimate objects gives instant relief but doesn’t help.
David I totally agree. I have to take a deep breath and try again whilst resisting the temptation to just let someone do it for me. It is so frustrating but it sounds like you have recognised that being patient with yourself is the best approach. Thank you for sharing your experience.
Hi Michelle and David: As a PCS survivor I can appreciate what you are going through. I have come back because I knew what to do. I have since helped and treated many, many PCS/CTE sufferers with approximately 80 to 90% success rate. No, this is not BS, it is a fact.
If interested, you can reach me at doctisme@optimum.net.
Have a great day. tony
Thank you Tony, and I’m sure some readers will be very interested to hear your advice. It’s always useful to be able to learn from the experience of others.
I don’t like it when people talk to me like I’m a kid. Talk to me like the adult I am, but be understanding if I need you to repeat yourself because what you had to say may have been too much to digest at once. It’s hard to fully answer this question, though, because I can be a Jekyll and Hyde sometimes. I want to be useful to others, yet don’t overload me. I need a little meter that plugs into my forehead so people know where I’m at.Now THAT would be a sight. I guess, first and foremost, I need people to understand when I suddenly let them know that I need to check out’. That I’m suddenly very fatigued or stressed and need a break.
Love the meter idea. Maybe we could find someone to make it.
I wish people would listen more & try to understand, but it’s impossible unless you’ve been through PCS and/or know someone that has. If they see it (I.e. You are in tears because your head is killing you & you can’t get the drugs out of the blister pack) they get it, but if they catch you on a 1/2 decent day they don’t. I’ve been fortunate to have a lot of friends check in on me & help a lot. Just bringing over dinner one night helps or showing up & insisting on going to the grocery for me or the most helpful which was a friend helping me with laundry & changing the sheets. Everything was so exhausting for the longest time. It’s been really tough to have no social life for 8 months. I went from being out 3-4 or 5 X a week to zero. I’m just starting to have people over to visit, but I can’t go out – lights, noise & movement are still bothering me & triggering symptoms. Most people just don’t know what to do & when asked I have a hard time asking for help or knowing what help I need. Everything is overwhelming when you can’t think straight and/or talking is a challenge. I just wanted to be left alone because I felt so vulnerable & emotional for the longest time. Then people would just talk too loud or fast & I couldn’t keep up so it looked like I was not interested. Or they would ask so many questions I’d just get confused & frustrated trying to answer.
Your absolutely right, and it’s good that you have such an understanding network of friends. It’s amazing how those everyday jobs we normally just get on with, suddenly feel like being asked to scale Mount Everest.
I have found that people in stores or on the telephone are very understanding. I used to talk very quickly but now I can’t do that and I am always searching for words. But, I can still talk and one of the best things that I have found is to have coffee, one on one, with friends. One a day seems to work best. And I started with 21 persons for three weeks so I didn’t tire them out. And they had to listen to me only once every third week.
It is always better if I have had a walk of at least twenty minutes before meeting. I have done a lot of study of what does work and the difference between 15 minutes and 20 minutes is remarkable and it doesn’t matter how slowly (or quickly) you may walk. And I look forward to going to a coffee shop to this meetings. But just as other people who commented as avoiding a noisy place, this is so true. When the number of people in the room gets too big, you don’t have any selective and then these conversations are just noise.
I have done this for over three years and I recommended it.
My daughter has a brain injury and as I read this I am thinking that she too has said many of this. As a mom my biggest downfall is wanting to do things for her. I had to step back and let her do something for herself.
By all means support her, but she needs to relearn again. It will be small steps but that will help build her confidence too.
18 years after my RTA I can only reflect on the early years and wish that people didn’t have the “you’re only 25 pull your socks up! You don’t know the meaning of tired attitude” learning more about me and educating those around me has been the best thing. I’m now doing that with my children – one of whom I has a brain injury too from an accident when she was 6 years old. We now learn together.
I guess at least you have been able to put your experience to good use with your daughter. It’s difficult for anyone to watch their loved one go through it, particularly as it can be so difficult to understand. But you must have great empathy for her experiences as many are probably similar to your own. Every cloud has a silver lining.
Hi there, thanks for your blog, I’m finding it really helpful in trying to understand my sister. She looks fine, and sounds fine, but because of her acute embarrassment at needing a lot of physical help, she doesn’t communicate her needs, fears, or struggles. So she is sometimes described as aggressive, when that is in fact a symptom of fear and humiliation. I thought I knew what broken-hearted meant until this happened.
Claire I completely understand what you mean about being heartbroken. When I was caring for my Dad as Alzheimer’s begane to swallow him up, I felt exactly the same. In fact I’m not ashamed to say I now try not to think of that period of time because I don’t want to remember him like that. I want to remember him at his best. Your hurting for her because of how ashamed she is feeling about her limitations, and because you miss her.