Tootie Hiles .... Home > Living with Traumatic Brain Injury Lost & Found: What Brain Injury Survivors Want You to Know To post operative Brain Cancer survivors Tootie Hiles is one of those Women who will fight to the end, as well as continue in life as a Traumatic Brain Patient Its is a daily routine of what its like for you to all understand the Battle. Please read from the author of Institute understanding the Brain I need a lot more rest than I used to. I’m not being lazy. I get physical fatigue as well as a “brain fatigue.” It is very difficult and tiring for my brain to think, process, and organize. Fatigue makes it even harder to think. My stamina fluctuates, even though I may look good or “all better” on the outside. Cognition is a fragile function for a brain injury survivor. Some days are better than others. Pushing too hard usually leads to setbacks, sometimes to illness. Brain injury rehabilitation takes a very long time; it is usually measured in years. It continues long after formal rehabilitation has ended. Please resist expecting me to be who I was, even though I look better. I am not being difficult if I resist social situations. Crowds, confusion, and loud sounds quickly overload my brain, it doesn’t filter sounds as well as it used to. Music is the only thing that doesnt irritate me . Limiting my exposure is a coping strategy, not a behavioral problem. If there is more than one person talking, I may seem uninterested in the conversation. That is because I have trouble following all the different “lines” of discussion. It is exhausting to keep trying to piece it all together. I’m not dumb or rude; my brain is getting overloaded! If we are talking and I tell you that I need to stop, I need to stop NOW! And it is not because I’m avoiding the subject, it’s just that I need time to process our discussion and “take a break” from all the thinking. Later I will be able to rejoin the conversation and really be present for the subject and for you. Try to notice the circumstances if a behavior problem arises. “Behavior problems” are often an indication of my inability to cope with a specific situation and not a mental health issue. I may be frustrated, in pain, overtired or there may be too much confusion or noise for my brain to filter. Patience is the best gift you can give me. It allows me to work deliberately and at my own pace, allowing me to rebuild pathways in my brain. Rushing and multi-tasking inhibit cognition. Please listen to me with patience. Try not to interrupt. Allow me to find my words and follow my thoughts. It will help me rebuild my language skills. Please have patience with my memory. Know that not remembering does not mean that I don’t care. Please don’t be condescending or talk to me like I am a child. I’m not stupid, my brain is injured and it doesn’t work as well as it used to. Try to think of me as if my brain were in a cast. If I seem “rigid,” needing to do tasks the same way all the time; it is because I am retraining my brain. It’s like learning main roads before you can learn the shortcuts. Repeating tasks in the same sequence is a rehabilitation strategy. If I seem “stuck,” my brain may be stuck in the processing of information. Coaching me, suggesting other options or asking what you can do to help may help me figure it out. Taking over and doing it for me will not be constructive and it will make me feel inadequate. (It may also be an indication that I need to take a break.) You may not be able to help me do something if helping requires me to frequently interrupt what I am doing to give you directives. I work best on my own, one step at a time and at my own pace. If I repeat actions, like checking to see if the doors are locked or the stove is turned off, it may seem like I have OCD — obsessive-compulsive disorder — but I may not. It may be that I am having trouble registering what I am doing in my brain. Repetitions enhance memory. (It can also be a cue that I need to stop and rest.) If I seem sensitive, it could be emotional lability as a result of the injury or it may be a reflection of the extraordinary effort it takes to do things now. Tasks that used to feel “automatic” and take minimal effort, now take much longer, require the implementation of numerous strategies and are huge accomplishments for me. We need cheerleaders now, as we start over, just like children do when they are growing up. Please help me and encourage all efforts. Please don’t be negative or critical. I am doing the best I can. you not understanding what the trauma of Brain surgery has done will by far make my journey to recovery I possible. Don’t confuse Hope for Denial. We are learning more and more about the amazing brain and there are remarkable stories about healing in the news every day. No one can know for certain what our potential is. We need Hope to be able to employ the many, many coping mechanisms, accommodations and strategies needed to navigate our new lives. Everything single thing in our lives is extraordinarily difficult for us now. It would be easy to give up without Hope. Tootie Hiles Another Brain Injury Survivor Excerpted from Lost & Found: A Survivors Guide for Reconstructing Life After a Brain Injury by Barbara J. Webster. © 20ll3by Lash & Associates Publishing/Training Inc. Used with permission. Survivors make the pathway to understanding the Human Brain without their toughness to fight we would have nothing to go off in the Medical world of P,ease Explain. Comments [320] Ive had a brain injury for almost 14 years and it hasnt gotten any easier for me. I have a husband who has complex PTSD and its very hard. I have to put myself last most of the time even though I cant cope with things myself... Trying to figure out how Im supposed to cope with this life. Oct 8th, 2014 7:53am Please join our Facebook group caregivers and parents of Post concussion syndrome. Having a community of families going through it really helps. My daughter is 3 years out, and still takes 2 medications. It can be a long process. Oct 6th, 2014 10:56am I work with all kinds of brain related people its a very rewarding job when people start to respond to rehabilitation the brain is a complex thing takes time and patience but in the end its amazing how it can repair its self Oct 5th, 2014 6:46pm Im searching for help for my daughter,19,suffered a mild traumatic brain injury ,4 years ago.She was 15 and everyone kept telling us to be patient,itll get better.But,it hasnt.Shes struggling,isolated,frustrated and much more.I am a single Mom,whos had Fibromyalgia for 15 years.I know what it feels like to have an invisible illness.But,I have found my inner strength and gotten my life back( 8 years now).Nothing compares to the pain of watching your child suffer and not knowing how to help or if youre doing the right things. We live in York,Maine.Im hoping to find support for her and myself as well as my youngest daughter,whos 17 Hoping someone will see this and help me...my daughter says she just cant do this anymore GOD BLESS, Suzanna Sep 29th, 2014 4:11pm This is so helpfull to me and describer most of my problems and Im sure can help my friends and family cope with different things that they think are just me. I love that you understand and Im not the only one out there because it sure does feel like it. Ive been thinking about going to a brain injury group and this article has helped me make my decision. I feel being around people like me may make me feel more apart of this world not just an inconvenience to my friends and family who have no choice but to put up with me. Thank you so much other survivors!!!! Matthew Rayner Sep 21st, 2014 9:31am I wish that my friends and family could read this because it fits me perfectly and I cant explain it to them. Thank you for writing this article. Sep 19th, 2014 4:14pm Wow!! This was helpful to me. Mirror image of what Ive been trying to get out of my mouth. Im just starting the doctor pass me around process for multiple concussions. Its hard to get things clear where they understand me. I will show it to my doctors. Thank You so much for SHARING this article. Sep 14th, 2014 12:40pm Beautifully written, clear and explains well. Well done and thank you! Im an english brain injury survivor (medical errors) and would love to try to translate this into french because I now live in France. Please would you allow that if I credit you with its creation? I might think of more - but I cant do lists nor keep concise like you! Many thanks, Jenny. Sep 13th, 2014 2:42pm Hello my name is Rudy Maddock. I have a brain injury also. My life is wonderful, God is so great and has done so much for me. One thing that I see is every or most are very different. Not all injury are alike but all have God thats why were all still here. Sep 13th, 2014 1:21am
Posted on: Sat, 11 Oct 2014 01:34:20 +0000
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