Brain injury is not an event or an outcome. It is the start of an often misdiagnosed, misunderstood, under-funded neurological disease. Individuals who sustain brain injuries must have timely access to expert trauma care, specialized rehabilitation, lifelong disease management and individualized services, and supports in order to live healthy, independent and satisfying lives.
When someone suffers a brain injury, the entire family is affected. Studies show that caregivers of people who have suffered a brain injury may experience feelings of burden, distress, anxiety, anger and depression. If you are caring for a partner, spouse, child, relative or close friend with TBI, it is important to recognize how stressful this situation can be. Information about brain injury and support can make a great difference.
Support groups are a great way to find the peer support we believe is so valuable to living a life after brain injury. Support groups are an opportunity for an individual with brain injury to establish a circle of friends, learn new strategies to meet the demands of their daily life, or simply feel that someone finally “gets it.” It’s also an opportunity for caregivers and family members to learn they are not alone either. There are others whose lives have been turned upside down and run through the wringer as a result of the changes that come with persistent challenges resulting from brain injury.
All too often, we meet caregivers who are sleep deprived, no longer eat well or exercise, have more headaches, and push themselves through their own illnesses to provide care for someone they love with a brain injury. All too often, we meet caregivers that had to give up their careers to stay home and provide care. This places an incredible strain on a caregivers health, mental well-being, and family finances beyond any loss of income that occurred due to an individual’s TBI.
If all of this sounds dramatic, it’s because it is dramatic. The need for information, resources, respite care, and support groups for caregivers and families is huge and can be hard to find and often difficult to get to when our caregiver responsibilities are in full swing. On the flip side of the same coin there is a great deal caregivers can do for themselves.
At BEST we stress that individuals with a brain injury can take control of their lives through peer support and education. They can learn new strategies and skills to help them navigate a strange new world. The same is true for caregivers. Some time ago, Brainline.org published a piece, “Choosing The Right Caregiver Support Group.” You can find that article here; https://bit.ly/1LNfXo6. The Brain Injury Association USA has a rich section of their website for caregivers; https://bit.ly/1lOsokg.
Life doesn’t just affect the individual with a brain injury. Brain injury affects everyone.
This item moved me so much I just had to share it with you.
I’m glad to see that you are awake! This is your brain talking. I had to find some way to communicate with you. I feel like I barely survived WWIII and am still not quite all in one piece. That’s why I need you. I need you to take care of me.
As time passes and you and I feel better and better, people, even doctors, will tell you that we are fine, “it’s time to get on with life.” That sounds good to me and probably even better to you. But before you go rushing back out into that big wide world, I need you to listen to me, really listen. Don’t shut me out. Don’t tune me out. When I’m getting into trouble I’ll need your help more than I ever have before.
I know that you want to believe that we are going to be the same. I’ll do my best to make that happen. The problem is that too many people in our situation get impatient and try to rush the healing process; or when their brains can’t fully recover they deny it and, instead of adapting, they force their brains to function in ways they are no longer able too. Some people even push their brains until they seize, and worse… I’m scared. I’m afraid that you will do that to me. If you don’t accept me I am lost. We both will be lost.
How can I tell you how much I need you now? I need you to accept me as I am today… not for what I used to be, or what I might be in the future. So many people are so busy looking at what their brains used to do, as if past accomplishments were a magical yardstick to measure present success or failures, that they fail to see how far their brains have come. It’s as if here is shame, or guilt, in being injured. Silly, huh?
Please don’t be embarrassed or feel guilt, or shame, because of me. We are okay. We have made it this far. If you work with me we can make it even further. I can’t say how far. I won’t make any false promises. I can only promise you this, that I will do my best.
What I need you to do is this: because neither of us knows how badly I’ve been hurt (things are still a little foggy for me), or how much I will recover, or how quickly, please go s-l-o-w-l-y when you start back trying to resume your life. If I give you a headache, or make you sick to your stomach, or make you unusually irritable, or confused, or disoriented, or afraid, or make you feel that you are overdoing it, I’m trying to get your attention in the only way I can. Stop and listen to me.
I get exhausted easily since being hurt, and cannot succeed when overworked. I want to succeed as much as you do. I want to be as well as I can be, but I need to do it at a different pace than I could before I got hurt. Help me to help us by paying attention and heeding the messages I send to you.
I will do my part to do my very best to get us back on our feet. I am a little worried though that if I am not exactly the same… you will reject me and may even want to kill us. Other people have wanted to kill their brains, and some people have succeeded. I don’t want to die, and I don’t want you to die.
I want us to live, and breath and be, even if being is not the same as it was. Different may be better. It may be harder too, but I don’t want you to give up. Don’t give up on me. Don’t give up on yourself. Our time here isn’t through yet. There are things that I want to do and I want to try, even if trying has to be done in a different way. It isn’t easy. I have to work very hard, much harder, and I know that you do too. I see people scoff, and misunderstand. I don’t care. What I do care about is that you understand how hard I am working and how much I want to be as good as I can be, but I need you to take good care of us, as well as you can do that.
Don’t be ashamed of me. We are alive. We are still here. I want the chance to try to show you what we are made of. I want to show you the things that are really important in life. We have been given another chance to be better, to learn what is really important. When it is finally time for our final exit I would like to look back and feel good about what we made of us and out of everything that made up our life, including this injury. I cannot do it without you. I cannot do it if you hate me for the way being injured has affected me and our life together. Please try not to be bitter in grief. That would crush me.
Please don’t reject me. There is little I can do without you, without your determination to not give up. Take good care of us and of yourself. I need you very much, especially now.
©1996 Stephanie St. Claire