A brain injury is an invisible injury, or at least it is in my case. (Of course this is not the case when it resulted in a (partial) paralysis or the need to use some kind of walking aid due to balance problems.) If you would pass me on the street, you wouldn’t see that I have a disability.
Two sides
Mostly I’m grateful for this invisible nature. Since people can’t see that you’re different, you will get treated just like anybody else. For example, not all the people I work with know of my injury. This means that I know that my work will get judged on quality alone. Which I appreciate. It means that for a few hours a day I can play the part of a ‘normal functional member of society’. Sometimes it feels like having a secret identity. Alas, without cool costume changes or the superpowers.
When I’m feeling okay, I like being treated normal. But I find it really hard when I’m not feeling so good. After my few hours of work, I change into my other self. The one that doesn’t feel like a normal functioning member of society. With less energy, I get more irritable and I just want to be alone and lay on the couch. If by that time, I’m still around people I have to really exert myself not to say something hurtful or angry. Because when I have reached my limit, my filter goes away and I will say things I normally wouldn’t say.
Here the invisibility sucks. As people can’t see when I change into my other self, they just hear me being judgemental. So after a couple of hours of sleep, I will have to apologize and try to explain what happened.
The courage to ask
Another problem arises with using public transportation. When I’m not feeling so well I’ll use public transportation. I figured it would be safer to be sitting down and being driven around with my earplugs, than to cycle while trying to avoid hitting objects or persons or taking a wrong turn. Which leads to the ever so difficult conundrum of ‘what to do when it’s too busy and all the seats are taken’.
In my four years of this new life I have yet to find the courage to ask someone if I can sit in their seat. When there are a lot of people along for the ride, it’ll cost me more energy and I’ll get increasingly overwhelmed, dizzy and uncomfortable. But I still haven’t found the courage to ask someone for their seat. So I do the next best thing. I just sit down on the floor. Sure people might look funny, but at least I’m sure that I won’t faint and fall down (one of my recurring fears). I’ve now learned to dress appropriately if I’ll expect it to be a busy commute. So no white pants or short skirt. That way if I have to sit down, I have one less thing to worry about. Still every time I do sit on the floor, I tell myself that next time I’ll ask for a seat.
I think I’ve managed only once or twice, to really stand up for myself. It was when I was still in rehabilitation. Therapists would weekly encourage you to listen to your body and to respect your limits. So after another week of encouragements, I finally managed to ask a waiter (in an empty restaurant) if they would turn the music down, so I could focus on the conversation I was having. Which she luckily was willing to do. Although this was a success, I still much rather try to pretend to be like anybody else.
Difference between knowing and feeling
As I write this down it seems a bit silly. I think if a friend told me this, I would say things like “but who cares what other people think of you” or “we are all pretending to be normal, just be kind to yourself” or “what is the worst that can happen, hat they say no?”.
*Sigh* I think this is again one of those conflicts between knowing and feeling. I know that it shouldn’t matter, that we all want to fit in and we all have our own insecurities and weaknesses. But in the moment itself, it doesn’t feel like this. I think that another complicating factor is that in these kind of situations, you’re already moving in the red. Which means, I’m already experience difficulty with finding the right words and controlling my emotions. Keeping yourself together is already difficult enough. Trying new brave things, is just a bit much then.
My New Years’ resolution was to be more courageous and less afraid. I hope that the next time I’m on a crowded bus and getting overwhelmed, I’ll finally muster up some courage and ask someone if I can sit down. Who knows, maybe I’ll someday I’ll actually do it!
Are you also better in giving advice, than following it? Have you found the courage to ask something for yourself which opposes the norm of things (or feel like it does)? What would you do, any tips?
Your first two questions are normal for everybody TBI or not, right? Most people who work in noisy restaurants welcome the chance to get a break from the too loud music constantly blaring away! I would give myself a break. Just give myself a break. Do what I can and if I fail miserably then I will take some notes and maybe try again. Failure or fainting or sitting on the ground and getting your white pants dirty is an event not a person. A TBI is an event, an invisible and difficult event, and you are still a person. Only you have seen your self image. But I bet that when people see how they think that you are they are pretty impressed by you.
Hi! Yes, I think everyone has had those questions at one point or another and has found a way to try and deal with it. Thank you for your insights! You’re right, I now realize I’ve mixed up events with being me. A pitfall I’ve found myself in before 🙂 So thanks again! You’ve inspired me to try and do better for me next time.