It’s hard for others to understand what’s going on with us when we say we’re confused. Heck, it’s even hard for us to understand. This lack of understanding leads to incredible frustration for others and for us.
What exactly is brain injury “confusion”, why is it different from everyday confusion and why are we, TBIsurvivors, brought to our knees when faced with it?
Well, there is such as thing a “getting confused” from time to time in life, and then there is “getting Brain Injury Confused”. Now, I am not trying to put “Brain Injury Confusion” on a pedestal, or say it’s much worse than any other kind of confusion, but I do want to make a distinction between the two. This may help people understand it better and maybe lead us to discover ways we can overcome it.
Not: Six of One/Half Dozen of the Other
Perhaps the best way for me to explain the differences is to relate an experience I had about ten years ago, which shows TBI confusion at its worst:
I needed to make a trip to the copy store to make copies of a stack of documents, and, having been in this situation before, I wanted to avoid the potential cluster-mess which I knew loomed in front of me. This is one of the peculiarities of brain injury confusion: I absolutely knew the trip I was about to make was going to test my abilities to be organized and stay level headed, and that if I made one slip-up I was going to be out of control confused.
I knew preparation was key, and the first thing I did was take my stack of documents and organize it.
Once at the copy store, I carefully laid everything out in piles. Setting myself up properly for this task was the first order of business. I hate to say this but I really needed to make this as idiot proof as possible.
Things went along well for about 10 minutes, but then, one sheet of paper got in the wrong pile and I was completely thrown off. My head started spinning as waves of confusion rolled up, and then my mind went blank, as though my internal processing center had lost power. I started to sweat and got very angry at myself.
I’ve learned over the years what works best for me in situations like this, and rather than try and correct any mistakes in midstream, I needed to be levelheaded and admit to myself that I was going to have to start completely over. I knew that if I had try to make any midcourse corrections I would get even more confused.
I was able to finish, drive home and plop myself down on the sofa: sweating, dizzy, exhausted.
Major Minor
Not every confusion episode is this dramatic, but while this one example highlights how intense an episode can be, it will also give you a clue as to how easily one can become confused, even when doing seemingly mundane tasks.
The type of confusion I encountered was, in some ways, similar to what someone would experience who’s having an anxiety attack, where one has emotional and physical reactions to being anxious.
While sometimes marked simply by blank stares and a passive admission of “I’m confused,” TBI confusion can, at its worst, elevate confusion to a situation where you feel incredibly confused!, don’t know what to do and feel like ripping somebody’s head off.
The only good thing about our kind of confusion is that often you can prepare because you have some understanding and knowledge of the situations that cause confusion, as I had tried to before I went to the copy store. Being able to predict when you’re going to get confused helps, but does not completely solve the confusion problem. You may do everything in your power to prepare for a situation you feel is going to be bad, and you still may not be successful in preventing it.
While being in a confused state can be very painful, as it was for me, often our pain comes, not from being confused, but from our inability to understand why we are confused, our unwillingness to accept it. This leads to the feeling that we shouldn’t be confused, which makes things worse because we get so down on ourselves.
I’ve learned that actively fighting the confusion only makes it worse. However, taking some time to understand what causes me to get confused, allows me to prepare. Learning about myself and how I react also helps develop the presence of mind that will allow me to handle these situations better when they arise.
It can be very hard to remove the emotion when one of these episodes occur, but we need to work on being objective and allow ourselves to have some perspective on the situation. Only by stepping back, accepting it and not being emotional can we hope to address the confusion in our brain.
Thanks, Jeff
It’s so awesome that someone can describe what it’s like. My family doesn’t understand why things are so hard for me. It’s three and a half years since my TBI end there’s very little willingness to talk or understand my situation. I subscribed to your emails while ago butt only just now got my email configured to let me read easily in the morning while I’m in bed so this was an accident I even read your email but I really appreciate it. I choose to try not to describe my feelings in terms of physical violence because I feel that heightens the emotion butt reading how you describe the frustration helps a lot. Because I know that I direct my anger towards myself and now I know that is a common thing for TBI. Thank you so much for doing this blog.
This rings true with myself, after having a career change forced on me. I decided that furniture/ cabinet maker was for me. Booked myself on a year long course every thing going ok until I had dove tail joints to make for draws. For the life of me I find it difficult to draw them out, cutting is ok but trying to put them together some days is a night mare. So I walk away until a friend saw my frustration and made me a drawer showing the joints together now I use this as a template.
Very helpful. I am newly diagnosed with a head injury.
My injury happened 4 months ago.
I had hit my head twice in the same injury where I also broke my nose. I fell in a dead fall and was unable to brace myself with my hands and hit my head on a granite counter top then bounced off of it twisting my head and cutting my eye as my head twisted along the inner railing of the metal counter bar on the way down from the fall and then finally landed on my head again when I reached the floor.
I was lucky the injury was caught on video as it happened at work. It was such a freak accident planking my head that way on the granite counter top.
Thank you for your Web site
It’s very useful .
Sincerely Lady L
This has to be one of the best articles I’ve ever read in order to help others understand (even ME!) Thank you so much. I’ve shared it on my FB. My 18 year old son is two years out from an auto accident. He has recovered so amazingly (from being almost declared dead on site) that most people will never understand what is going on still in his head. A brain injury is a brain injury. The key word here is “brain”, where even if you look physically like everyone else, it doesn’t mean you are suffering inside your head. Thank you again for a great article.
sorry, I meant to say it doesn’t mean you are “not” suffering inside your head.
This makes so much sense! I always just thought I was having a panic attack. Thank you for putting this into words.
Thank you for emailing me your perspective on inflammation of
brain, depression, traumatic brain injury and confusion. It is helpful
& comforting to know you guide
& direct. Deborah Rafter
Thanks Jeff. Yep. I have been known to sob hysterically in the copy shop or in the car afterwards.
I had a similar experience in a WorkComp Court day, that included copying and assembling documents along side of the defense counsel per Judge.
Security was called as I broke down outside the Courthouse when copying fiasco was over! Inability to put a sentence together in that state doesn’t help!
This article sure brings back some memories. Thank you.
An office quality scanner helps reduce trips to the copy shop and headaches and that level of confusion.
TBI Survivor since 1/9/12
“Day by day in every way I am getting better and better and better.”
I try to remember that when I’m in one of these states, the best thing for me to do is to meditate. I’ve done it in parking lots before I go into the grocery store and at work. Just pop in the ear plugs and focus on my breath for as long as it takes or as long as I have. Even a little meditation is helpful to me.
This explains it perfectly!!!!!!
Sherry Broadhead, My life has changed so much, my personality, I get confused constantly, I use gps for everything. I have one friend and my family basically disowned me. I have been so depressed and I isolate so I don’t have to deal with anyone. My life is a mess right now. I feel so lost in this world, I feel I don’t fit in anywhere. That’s why I’m going to the hospital, to get correct meds and then when I get done there I go to gosh to try to learn to live this way. It affected 3 lobes as large as grapefruit. Dr says he didn’t realize and had to do a cranioscopy I feel so lost most of the time. My caregiver who came to where I was staying canceled and I should of had it. Learn to walk talk swallow learn all new. Then along with it my partner died,,my mom died legacy bought out my house and caregiver used equity.. I am so tired most of the time it’s difficult. I wish I could go back I had a lot of pressure then but I still do. I am not the Sherry I was I want her back. I stud Derek very bad that has got a lot better. I don’t potty myself I just miss my family. If you can’t see a injury they think your fine. I remember very little. A battle everyday. I hope the hospital and the new nuero really helps. O and seizures were bad at first but slowing down. I lose balance and fall that more embarrassing than hurtful. I didn’t know who you were or remember.Sorry,but reading may help. I will get your book. Thank you
OMG!!!! this is EXACTLY what i’m dealing with RIGHT NOW! I have almost 700 pages of a legal file that i have to sort thru and answer. i was trying to explain to someone today how the person i’m renting from is sooooo angry about all the stacks of paper in my room and i have to see my speech therapist tomorrow so she can help me do the next step. If you can give me some ideas that would be nice. I’ll tell you what i’ve done so far….
1. i got 2 box containers, jumbo binder clips, paper clips, and 2 box containers for documents at Walmart.
2. put them in my car.
3. went to the courthouse and got a copy of my entire file.
4. while i was at the window, i attached the jumbo binder clips to the papers, so they wouldn’t come loose.
5. without removing the jumbo binder clips, i numbered every single page.
6. put the all the papers back into the each container.
7. then i went thru and (IN PENCIL) i wrote what was wrong or something to address and answer in my declaration.
8. i used colored sticky note arrows on the really important ones ….. actually they were all important, so at some point i had to stop, go back to the store and get some more.
tomorrow i get my next assignment. i feel pretty good.
The article/blog and everyone’s sharing is so relate-able.
Currently, my process is to write down step-by-step what I’m going to do and constantly refer to it – whether it be using the copier or washing clothes. I also use colored sticky notes when sorting papers and to let me know if xx is finished or needs research or filing. With recipes, I have to have all the ingredients measured and laid out on the counter.
I can’t control who or what other people judge, but sometimes I want to cry because people say that I look normal, then get irritated because I do things “weird” or too slow. Most times I remember that it’s only their opinion and in my world, it doesn’t count.