Brain Injury – What I Wish You Knew
Hi my name is Lauren and in 2018 I suffered a brain injury while working in a school as a teacher. Here are some of the things I wish you knew about my disability.
When you tell me “you look great”, I wish you could see how messed up and disjointed I feel on the inside, or the fact I probably just had about 5 hot flushes before you saw me. I wish people saw me at 3am when I wake up with chronic pain in my head and my jaw, or that I desperately need to ice and heat bag my neck at least twice a day to be able to get through. I wish people saw me five minutes before my carefully planned and timed appropriate shower verses 5 minutes after I’ve been stripped of all the energy I had left in me, or when people say “You’re so strong and have such a positive outlook”, I wish you saw every single one of my breakdowns where I tell myself I’m done.
But then I think to myself, the only reason why I’d want anyone to see all those parts of my recovery would be because I feel like I have to somehow justify or validate how I’m feeling and my diagnosis to some people, and why the hell do I feel like that?!? Why do we all get so caught up in worrying and wondering about what other people think, and why on earth, in the position that I’m in, am I making myself feel this way?
I just want to say, both to myself and to some people that may be reading this, who will go back and compare my blog to how I might present myself in person or photos……. My injury is real, my feelings are real, my symptoms and limitations are real, and most of these experiences and setbacks happen behind closed doors. I know my body. I know what I can do, what I can’t do, and the activities on both of those lists can swap and change very easily depending on the day I’m having.
The only person that I’m going to worry about when I think about how my body will react to different settings and tasks from now on, is me, and I am sooo okay with that! I’m okay with that, because I know that the people closest to me make an effort to understand as much as they can, and would never judge any of my decisions throughout this whole process. Every decision I make is carefully planned down to the very last detail, for me.
So how can people support not only me, but others living with a Brain Injury? I have been so lucky to belong to a supportive group of individuals across the world living with all forms of Brain Injury. I asked them what they would like people to know and how they would like to be supported - and this is what they said…..
“I’ve found a big thing for others to try to understand is that they need to be patient. As do we, for our brains to heal, and for us to learn how to work with our new brains.”
“This is an uninvited change. We didn’t want to change our personalities, we are not being dramatic or lazy, and we don’t want to complain all the time. We also never fake it! When I say I can’t do something today, I am not being lazy trying to get out of activities or tasks, I’m saying that I honestly cannot perform or go to that social outing today.”
“I wish I had a scar on my head. The invisible signs of a TBI (memory and concentration problems, fatigue, insomnia, chronic pain, depression or anxiety) can be more difficult to live with than a visible injury. If I had a scar on my head, it would help me feel validated or better understood. We may look normal, but shrugging off the invisible signs of brain injury is just belittling. Please don’t do that.”
These are just some of the raw, honest and heartfelt responses from individuals living with the diagnosis of Brain Injury every day for the rest of their lives. I know I’m not the person that I was before my accident. I live a “new normal” life, adapting the best way I know how. As the months go by I do get glimpses of her coming back, my personality, my sense of humour, and all the things that made me who I am. Not going entirely back to the “old me” is not all negative. I have found joy in new activities and strength I didn’t even know I had. To be honest, I feel like I’m becoming a better version of the person I use to be, fresh outlooks and all!
In the second half of this article I talk about my support systems and how I still aim to be there for my friends and family too. I know for a fact, every single one of my family members, friends and relationship have been affected dramatically this last year.
I sent some of my friends a couple of questions asking them what they have found hard about this last year and my injury.
Click here to visit my website and read what they said!
Lauren Spear – The Orange Butterfly