One of the hardest things about living with a brain injury, is explaining it to others. (Which is one of the reasons I started this blog.)
Finding the words
I mean, how do you explain it during a conversations in simple terms? How do you explain that your whole life suddenly changed? The way you react to things, the things you can do and the fact that this can change daily?
How to explain the fear you feel when your body ‘surprises’ you? When you suddenly have to deal with hyperventilation or panic attacks, when you notice you suddenly can’t verbalise your thoughts or when the outside world suffocates you?
How do you put into words your everyday struggle for balance? A balance between doing things and resting, to prevent (as much as possible) the fatigue and brain fog, while at the same time trying to mute the different stimuli from the outside world?
Dealing with others
How do you react when you get the respons “I get tired too” or “I feel like that even without a brain injury”?
Do you have the energy to explain why it’s not the same? That you only now realize how inadequate language can be? Should you use this opportunity to create awareness or do you hide your irritation and try to let it go?
What do you do when you can’t answer a question? Simply because your brain got overwhelmed by all the possible answers, as it was such an open ended question?
Or when an innocent comment really hurts your feelings, because you suddenly realize that people really don’t understand? What do you do when you feel like a burden, because people always have to accommodate to your needs?
What do you do when you start to think that the mask you show the outside world, might have been too good?
Who am I
Lately, these questions have been on my mind a lot. I think it’s the result of meeting so many new people.
As this means that I’m often explaining my brain injury. Which I don’t mind at all. But at times the responses get to me and not in a positive way. I’ll begin to doubt myself again, am I explaining it wrong? Am I complaining too much? Shouldn’t I be able to express myself more clearly?
And maybe my expectations are too high, seeing that I’m mainly meeting other travellers. Maybe these conversations aren’t the right ones to increase awareness.
But still, my brain injury is a part of me and I’d like to be open about it.
The art of listening
I don’t have the answers to these questions. All I know is how grateful I feel whenever I meet someone who really listens. When someone doesn’t inmidately responds with their judgement or own experience.
It has made me aware that I too can improve my listing skills. If I appreciate this so much in others, then I too should try to listen attentively without judgement.
I cherish those rare occasions when I meet a fellow brain injury warrior/survivor/hero. Here I can find true understanding. Which is probably true for all life changing events. There is a connection, or bond, that comes from experiencing a similar thing.
Now I most certainly don’t wish a brain injury to happen to anyone. But maybe we can try to cultivate our listing skills. To try to give someone our complete attention without immediately sharing our own experience or judgement.
I can’t change the people around me, but I can do things differently. A wise person (Mahatma Gandhi) once said “be the change that you wish to see in the world.” That’s why I’ll be doing my best to be a better listener.