Meeting other brain injury survivors always does me good. I’d instantly feel a sense of kinship. Even though no two brain injuries are the same, we still face similar struggles, obstacles and challenges. They understand what it means to live with a brain injury. Something others simply can’t. Naturally it (really) helps to have loving and supportive friends and family members, but they can only empathise. To truly understand, that takes real-life experience.
Regrettably, you don’t get a handy manual on how to life your life in order to facilitate your recovering brain. Resulting in a lot of guesswork, each and every day. When things don’t go as planned, I then quickly assume that it’s my fault, that I’m doing something wrong. I mean I’ve been living with this new reality for over four years now. Surely I would know by now what my limitations are and how I have to deal with them? What smart decisions are? And not having to hit my limits as often?
Life in a non-brain injured world
In my daily life, I’m surrounded by non-brain injured people. Which probably applies to most people living with brain injury. And the problem is that people expect that you learn to live with your limitations. That after you’ve had a third successive bad weekend, you must be doing something wrong. And I’ll go along with and start questioning my own decisions. When I’m having a bad day the first thing that goes through my mind is “what have I done wrong?” and the second thing “why can’t I take better care of myself?”.
Which aren’t really helpful or positive thoughts. Well-meant comments or questions of others like “did you do too much again?” or “why didn’t you stop sooner?” also aren’t really helpful. After all, these are questions that I ask myself almost every day. The problem is that nine out of ten times, I will be feeling alright until the next moment, when I suddenly realise I’m in the red. Knowing when enough is enough and when to take a break, isn’t always a gliding slope filled with warning lights. Sometimes it’s a sudden wall that you’ll drive straight into.
This has made me really good in deflecting questions. Question like “what did you do for the weekend?” or even “how are you?”. As I know the look people will give, when I have to answer that I’ve spent yet another day in bed.
Afterwards I will wonder if deflecting truly is a solution. I also could have used that question to educate others on what it means to live with a brain injury. But it’s always a mood killer, you’ll get a lot of follow up questions and I get really self-conscious to all the sympathetic looks or comments.
Meeting fellow survivors
To get back to the beginning, that’s why I cherish meeting fellow survivors. I don’t have to explain and people understand what I mean.
This week I happened to chat with a fellow survivor about the unpredictability of our injuries. About how difficult it is to adjust everything, when you don’t know how much adjusting should be done. That sometimes your brain just has had enough and all that’s left for you, is to deal with it. That especially when you think that you’ve finally mastered the balancing act, you’ll get thrown a curveball and have to go to bed again.
Even science still considers the workings of the human brain a puzzle. Why then, would we expect to have solved our own puzzle? Or would others expect that of us?
It wasn’t until the next day that I realised that I’d learned something. I wrongly had been thinking that I had complete control. That my bad days were my own fault. Whereas they were the result of my brain injury. My own actions do play a part, naturally, but I didn’t need to blame myself entirely. After all, here was someone who ran into similar difficulties.
It wasn’t our fault, we were doing nothing wrong. It’s simply one of those things that comes from living with a brain injury. Some days are good and some are bad. Sometimes you’ll get a headache when you need to take a break and other times you’ll get dizzy. The unpredictability is just part of our new normal.
Have you been able to find fellow survivors to talk to? Have you had one of those “it isn’t just me” realizations after speaking to others?