Being TBI survivors, we all live the struggle; it’s in our face every day. The battle we are in can be physical, mental, emotional or a combination of all three, but it’s always there; and it takes strength and perseverance.
Every day we wake up to face the same struggle. The same #{%^ struggle. The individual challenges and the details we face each day may be different, but we all have that brain injury struggle in common, and all we want is to be able to live a normal, fulfilled life.
The More Things Change the More they Stay the Same
Our day might start by simply trying to get out of bed on our own and mobilize. Maybe it starts with brushing our teeth, and trying, once again, to comprehend what has happened to us because we don’t recognize that person in the mirror. Maybe it’s when we have to figure out how we are going to get somewhere.
Many times the individual struggle isn’t about having to do things; it’s about our cognitive and emotional state. The fear. Depression. The hopelessness and the resignation. Confusion. Maybe we cringe when we think of having to face another day full of things we can’t do anymore and wonder how we’ll manage to get by.
Some of us get stuck even before we attempt to get out of bed; we are sunk deep in brain fog, or we wake up so depressed we can’t get up.
The days roll on:
Each day the sun comes up bright and new, and, for one brief moment we catch the warmth of the sun’s rays. We might think, “Today will be the day that my struggle will get easier.” We might even feel ourselves relax for a moment, but the reality is that we go through our day and little or nothing changes. Then the end of the day comes, and we start a new cycle by crawling into the same bed we rose from in the morning.
What to Do?
We can’t escape the fact that, because of our brain injury, our lives have become much tougher; so tough that, at times, the whole thing might seem to be too much for us.
This struggle is not a figment of our imagination. It is real and it is all-consuming.
Many times we get caught up in how big that battle is and so we just live day to day, doing the best we can to get by. We get so used to the status quo that we don’t realize that we are being controlled; that the routine and the despair has sucked us in.
We are not even aware that we don’t have to be controlled by our brain injuries.
That’s right. We don’t.
Yes, the struggle is real, and it should not be minimized or made light of, but we don’t have to succumb to that struggle. When you are stuck inside a brain injury, things might seem out of our control. However, one thing you may not know is that how we deal with and relate to our brain injury is our personal choice.
Taking that further, how we accept our brain injury and integrate it into our lives is what determines the quality of our life after brain injury. Now, think of how we do that: accepting our brain injury and integrating it into our life is all about our attitude. We all know that our attitude, on it’s own, probably will not cure anything, but finding a way to carry a positive attitude and a constructive outlook with us will give us a chance to build bridges instead of walls, and help us live in hope instead of despair.
Your attitude will lead the way. A poor attitude can bring you to the deepest depths, while a good attitude can help you soar into a world of possibility.
Winning the Struggle
It’s not easy, and it will always be a struggle of some sort, but in order to give ourselves a chance at being successful and living a fulfilled life, we have to train ourselves to think of the positive. In order to do this we have to work hard at controlling our thoughts so they stay positive and constructive, because left to its own devices, our minds will wander to bad thoughts and worst case scenarios. We will then become our own worst enemy.
A concept that may be hard to understand or accept, but is at heart of this post is this: how we live our life after a brain injury should not be about what happened to us. Rather, it should be about how we choose to deal with what happened.
This is the kind of thinking that will put us back in control of our lives.
Thanks for reading, Jeff
I needed to read this today Jeff. Generally these days (17 years post DAI) I’m very positive & have been labeled resilient by my GP & others. I admin the FB group I set up & have been doing my best to raise awareness of TBI this year, doing radio shows on an English speaking radio station & a tv slot in French, plus I’ve presented on TBI at the school where I used to teach.
This weekend however I’ve had some kind of bug with migraines. This seems to have zapped all my energy & I’m currently feeling low. Probably the anticlimax of finishing my brain stuff & generally being below par. So it was good to read you say that ‘it will always be a struggle’. Perhaps I thought I’d won the battle…..but there is no final ‘win’ to be had.
I was originally diagnosed with a small right frontal lobe bleed & told I could work. Fantastic, I thought, I’m bigger than this TBI thing, I can beat it. 15 years of continual battling through my brain telling my body ‘STOP!!’ with various illness, alongside the joys that are depression & insomnia, led to a seizure. Which led to a 2nd MRI which revealed scarring of a DAI.
I’ve fought long & hard to get this recognized by the benefits system in Switzerland where I live. I’ve been waiting 14 months for a response to my latest request for help, going from a well paid job with promotion prospects, to scraping by. The idea of anyone else going through this is heartbreaking, but I know it happens all over the world.
Anyway, I’ve waffled, but it’s so important to remember that there will be no end to the battle of living with TBI, just conquering it day by day, with the odd struggle & bad day or 2.
Thanks for all you do.
Jo
Hi Jeff, I love your writing as it describes the day to day realities of us TBI survivors. My only suggestion is to add ‘spiritual’ to the list of areas impacted by TBI. Despite experiencing NDE during my accident, I am struggling with my faith and belief in a higher power. My hope is intermittent and my belief that everything happens for a reason has been dashed. My TBI deficit is first and foremost a spiritual wound. Please keep up your writing. Damian
Thanks very much for doing what you do. It’s very helpful. Troy
Boy does that sound true! I worry the depth of the depression and despair is beyond adjusting. Your words give me hope. Thank you, Jeff. Very helpful!
Thank you for your thoughts. So often, I feel very much alone, like I’m the only one struggling like this. I almost never see other folks out in public having to deal with issues like mine. I have my cognitive function and my bad math skills; where it hit me the hardest, is where “me” lives. My sculpture, my outdoor activities, my general “physicality”. You can say “have a positive attitude”, but it’s really, really hard to do when you don’t seem to be making progress. I’m still dealing a sizeable limp and that doesn’t work too well. My limbs work, just not at 100%. It’s hard when I’m the only motivator, when I’m the only one thinking I can do it. I’m just so tired of the struggle, and tired of trying so hard. You would think there would numerous resources here in LA, but there aren’t. Plus, I don’t have bottomless pockets.
I don’t know. Sometimes it doesn’t seem worth it to get up.
Gina
Gina, I understand. Maintaining a positive attitude can be extremely difficult, and the whole thing can be extremely tiring. But it’s ok to get tired of the struggle once in a while, understanding that the struggle is why we keep On. A kind word would go a long way, but I know it is hard to find even that sometimes. All you can do is do the best you can and look for things that inspire you and keep you moving. I hope that helps. Good luck. Jeff
Thanks for sharing with me Jeff. My daughter has a TBI and it helps to hear the experience of other people for me.
Another excellent post and, again, just what I needed to read and to think on. It seems that every time things start falling apart, you send a new great post and give me so comfortable about deal with my damaged brain.
Thanks again for your honest thoughts.
Marcus