As I've been discussing the challenges of living with a brain injury to different people today, I have received an immediate urge to shout from the rooftops the extremities that people simply do not understand. It is of critical nature for those supporting someone who experiences brain trauma to seek knowledge in this topic. As is with any difficulty we face in this mortal existence, although magnified, trauma to the brain is something that absolutely cannot be managed alone. While I will never dismiss help from the other side of the veil, there are far too many times that the veil feels a little bit too strong.
First thing I find I need to reiterate is the deviation magnitude of resources. Any average person wakes up with a jar full of resources. After a bad night's sleep - maybe a pocketful less, but no where close to as low as someone with a traumatic brain injury after the best night's sleep they can possibly get (which is not very great). Then, while it takes average person, say Joe, maybe 3 resources to get up, get ready for the day, grab something to eat and head out the door, it takes someone with a TBI a large handful. Joe then can go to school, work, come home and make dinner, do some homework and then hang out with friends before he goes to sleep and wake up with a full jar of resources again. But getting up,driving, and going to PT can take all of my resources for one day and then some. Life is EXHAUSTING!!
Additionally I feel very compelled to stress the reality of frontal lobe injury. House MD 5x17 depicts a good example of a frontal lobe injury. The loss of filters and inhibitions is very real and as I watched this episode, I began to more fully understand why all of my friends left me so quickly after the accident. Although, unlike the man in this episode I had absolutely no idea or concept that what I was saying had any affect on anyone. I couldn't see that it was hurting people, and Is couldn't even remember what I had said moments earlier. I legitimately started to tear up when he says that he would rather die than go home and run all of his family and friends away from him. I couldn't comprehend consequences then, but living them now isn't fun. There is another key difference between this man and a brain injury - his deficit could be removed; ours can't. His was an attack, ours is an empty hole. In his case, they took the army away and things got better; for TBI survivors, we have to learn a new pathway around the hole.
Please, be patient with us as we try to navigate our way through this new life. Help us to grieve the loss of our old selves as much as you need to grieve that same loss. Remember that we are in this together, even when it feels like those of us with traumatic brain injuries are awful. We are dealing with every kind of loss imaginable - loss of abilities, loss of everything we knew, loss of everyone around us, loss of regular environments, loss of daily functions, and loss of self. So yeah, we get angry. We're not actually angry at you; just at all of the changes that took place so suddenly.
I don't know how many people still check my blog. I don't know how many people this will reach. But I feel these messages need to be made known to the entire world. So, if you are in a position where you might need someone to come and speak for a few minutes, please send me an email or give me a call. If you agree with what I am saying, share it on your social media feed, etc. Please, help me spread the word. Help me inform the world that brain injuries are real, they are tough, but we can make it through with support of others!
