Living with a brain injury is like gambling every day. You don’t know what you are going to get, but you’re always hoping today your number will come up. I know when one of my good days comes around I often push my luck a little too far. I’m like the gambler who thinks they’re on a roll, and suddenly they lose it all.
As bad days out number the good, temptation can get the better of me.
Brain injury survivors don’t really get used to the tired, foggy feeling. It’s more that you come to expect it and you’re not surprised when you’re clumsy and making mistakes. So when you’re having a rare day of being on top form, it’s like nothing can stop you. Until it does.
I know I should pace myself, and savour these days which are virtually an endangered species. But that would be too sensible. Besides I feel like I always have to be sensible now. I want to be able to have carefree fun again. But as an adult there is no such thing as carefree really. We are responsible for things, like paying the bills, keeping a clean and tidy home and planning for the future. Children however should be able to experience pure, unadulterated fun.
My advice for parents with children living with a brain injury.
Firstly I would like to tell you I’m not a mother, so I’m sure the Mums and Dads reading this know lots more than I do about parenting. But I can tell you some things about being a brain injury survivor that perhaps your child struggles to express.
When I feel I have the energy and mental capacity for once to do something, the last thing I want is someone telling me to slow down. Yes, I know it’s said with my best interests at heart. But I don’t want to feel like I’m disabled and have to sit everything out. I realise that in many ways I am disabled, but think of me as Wendy from The adventures of Peter Pan. She shouldn’t have been able to fly, and compared to Peter she was disabled. But when she was having a good day (in the form of some fairy dust) she was away! As the oldest she knew that really they shouldn’t fly out the window, but the opportunity was there. So her sensible hat slid off, and she wanted to experience the impossible.
However, when I do stop and rest, I realise then how much I needed to. So instead of having to be the spoil sport who is always saying no, try another tactic. Say “poor old Mum/Dad needs a rest for a moment, let’s just sit for a minute.” That way they are doing it for you, rather than being told that they have to stop because of their condition. No one wants their weaknesses pointed out all the time. Instead we want to have things to celebrate.
It’s important they learn how to manage their condition, but that life lesson is happening all the time. We only get to be young once. I’m not saying let them run riot everyday and injure themselves. Just occasionally let them run with the wind and create those memories which will last a lifetime.
Other articles you may like:
- 7 ways to support brain injury survivors with chronic migraines
Why you’re wrong if you brand a brain injury survivor as toxic
- Guest post: “Mind full of jumbles” – Brain injury survivor, Robin
- The new me and my Jumbledbrain blog
- TBI and PTSD isn’t limited to just war vets, it can happen to anyone
- Guest Post: Navigating a Brain Injury During a Pandemic
2 replies on “Good days & bad days, but with a brain injury two are never the same”
I am a 8 year survivor, Patience is the main thing I can tell you to have along with understanding. The person you once loved is gone, always be there for the now. As a brain injury survivor I have made plenty of mistakes and been misunderstood more times than I can count. Take the time to listen and learn as much as you can about brain injuries, they are all different but the same.
Thanks for this Tammy! Whilst it’s so sad that you have had to go through this at such a tender age, it’s so important for us to hear from young people. Growing up is tough enough as it is and it’s important that as adults we hear what you need from us. Patience, listen, understanding. Got it! 🙂