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Brain injury blog by survivor

Brain injury blog by survivor



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Brain injury blog by survivor

Brain injury blog by survivor



The agony of the cognitive tailspin after a brain injury

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Just when I think I have overcome the cognitive hurdles of my brain injury, a bad day hits..... Or a bad week. I'm battling with my own brain at times, & there's often other casualties.......

Most brain injury survivors find the change in their cognitive abilities the most frustrating. I have noticed a significant improvement in mine. However I’m still surprised when the bad days strike. I can go from being on the money, to being that member of the quiz team who insists they have the answer. And then it turns out what someone was originally going to put down would have won you the point.  (Actually that’s not accurate because I’m not arrogant enough to be as forceful as that. ) In the moment I am confident of what I’m saying, but when it’s too late I can see where I went wrong.

Getting the details a bit skew-whiff. 

Like many I don’t automatically tell everyone I meet that I have a brain injury affecting my cognitive abilities. So I imagine they might find my attention to detail is…  lacking.

One day I met a friends Mum who I had only spoken to briefly once before. I jovially commented on her lovely Northern Irish accent, and she happily told me of her proud heritage. I told her my Mum was also from the Emerald isle, in an attempt to find some common ground. She was delighted to hear this and enquired where my Mum was originally from.

At this point I should tell you my Mum was from county Kerry, firmly in the south-west of the  Republic of Ireland. Whilst Ireland is a much calmer and peaceful place now, the generation both these ladies are from would clearly remember the unrest the country went through. Even I do as the devastating affects the IRA and The Real IRA had are even within my lifetime.

My brain injury affects my cognitive functions, so I don't always say or do the right thing. I keep putting my foot in it.

The punchline goes horribly wrong….

Suddenly I realised I couldn’t remember, which I was surprised and embarrassed by. Under pressure I tried to think of what the words sound like. And I stumbled on something that had a familiar ring to it, and blurted out “Derry“. Instantly I knew I had said the wrong name, but I thought it wouldn’t matter as the conversation would move on and she wouldn’t need to know my error. I mean it’s not like we were talking about a distant relative, what daughter doesn’t know where her Mum is from? Particularly one who brought the subject up.

Her eyes lit up and she said “Oh not far from me, which part?” Oh dear, now I was snookered. Derry, or better known as Londonderry, is the second largest city in Northern Ireland. So her question was perfectly reasonable. As the word “Kerry” lazily made an appearance in my head I knew I had to admit my mistake.

“I’m sorry I meant Tralee in county Kerry” I said sheepishly. She gave me a stern look.  “They are very different you know” she replied. In that moment I felt my cognitive slip up hadn’t just made me look stupid, I had insulted the Irish nation. Of course I understood the political history and how it still can be difficult both sides of the border. But what I had said was as upsetting as when foreigners think England is Great Britain, not just one of 4 nations.

Trying not to beat myself up.

Whilst I’m sure she  wasn’t as worried by my mistake as I thought, I knew my Mum would have been. As she is sadly no longer with us, I could see her scolding me for misquoting her story. Yes she moved to London as a child and lost her accent, but she was still deeply proud of living on a farm in Ireland when she was young. I didn’t mention in this short conversation that my Mum had passed away and the lady moved on to speak to others. The situation was completely my fault, and she did nothing wrong. But I still felt stupid and that I had disrespected my Mum.

If there are times someone with a brain injury says something wrong, but can’t see their mistake, it could be a confabulation. Read more in Confabulation is not lying. False memories due to brain injury.

So my advice to others is, give yourself some breathing space. On those days when go feel your brain is struggling to get out of neutral, don’t put pressure on yourself. I should have taken a little longer to reply, or even said what my problem was. Then I could have avoided the awkwardness I created.

How has your cognitive ability changed? Has it landed you in hot water?


12 replies on “The agony of the cognitive tailspin after a brain injury”

I constantly have little slips. Sometimes I catch it and sometimes I catch it only when I see the other person grin or look puzzled. Last night I was talking to my husband about the upcoming Blue and Gold scout Banquet i am helping plan. and he was avoiding eye contact, but still listening.
“What did I say?” I asked. He’s used to this now and won’t always correct me if I don’t notice.
Apparently I was calling it the Red and Gold through the entire conversation.
A minor slip but par for the course.

I have a scar on my head which is just a flesh wound but it still hurts 2 years later. I use a shampoo but Redken for sensitive scalp to reduce the pain. But I probably had head and neck pains which were terrible for at least 6 months. It was muscular so I guess that’s whiplash.

Yes I do ! and cat scan was fine at 6 weeks now Im at 7 months past injury and i still cant lay with the back of my head against a pillow or sit with it against a chair or anything or it causes a lot of pain. within seconds of laying with the back of my head touching the pain starts .

yep.. and im about to be 25 pre TBI n 25 post TBI (50yrs old) but they didn’t put a plate in my head.. so over the years the layers of skin just slowwwwwwwly sank down in n now i gotta halfa ping – pong ball size “radar-dish” in the middle left side of my head and it ALWAYS hurts now. And.. to top it off, it internally acts as a woofer/tweeter like speaker to amp up the noise of everything around. Brain Injury SUX!

I lose my train of thought so much while in conversation! My short term memory is also not great, and I misplace things a lot more now. My thinking used to be really sharp, but it’s been nearly 18 months since my concussion, so I’m just learning to accept it all!

Yep, I constantly ‘slip up’, conversations can be tricky, if it’s going good and I haven’t lost my train of thought, which can happen easily, awkward ‘oh sorry what did I say, what did you say? What are we talking about? Sorry it’s gone’ Then it feels really awkward, how do you continue a conversation when the person you are talking to doesn’t know what they’re just said?
I either do that or go to the other extreme and ramble on and on about every detail and say way too much information, awkward.
It’s a skill conversion, learning to listen and pause then respond appropriately. It’s exhausting too, all that battery power used up by your brain, I soon go down hill and my speech is the first to go, slurred and broken, family understand but others leave me feeling emotional and embarrassed. But that’s not going to stop me, it’s slow to learn this skill, it takes lots of practise, you will see it slowly improving, but really slowly. Don’t give up, people’s reaction to the awkward conversations say more about them not you. We all have something to contribute, no matter how jumbled or little it is, people need to hear your story.
As for the headaches, me too, can’t sleep on my operation side of the head, it causes my daily headache to become more intense. Make friends with your scar and lumpy bumpy head, I use watermans grow me, shampoo because my hair was falling out after the operation and stress, it gives advice to massage your scalp for 2 mins. You get used to how your head is now, and it makes blood flow better, thus less tenderness, better hair growth and you make friends with new bumps. This was very emotional for me at first, but now its ok, after all it’s not going away. There’s a gain in the pain !!

It is frustrating, and for me it was embarrassing, to say something that didn’t fit the conversation. Or I would get lost in my thinking and lose track of what we were talking about. A lot of times, I had to say, “I’m sorry. What were we talking about? I got off track there for a sec.” People are forgiving and remind you where you were in the conversation. It’s a bigger deal to us because we’re embarrassed than it is to the other person.

If they don’t know that you have trouble sometimes because of the TBI, because they don’t know you well, you have to tell them. As hard as that can be to do.

One thing that does help is to consciously slow your speech before you say something. It was hard for me to do that. It does help though.

It does get better with time. It’s been close to 14 years for me since the TBI (it surprises me to write that.) and I’ve gotten used to speaking more slowly now. I used to think that made me look like I couldn’t think well, but that’s not the case. We’re harder on ourselves than other people are. Hang in there.

Thanks Ellen. Everything you have said here makes a lot of sense so I am going to try to slow down a bit ?

Yes, I have do experience this often, as I am only 8 months in I suspect it will improve with time.
My husband and kids feel comfortable pointing out my errors (and it doesn’t bother me, unless my husband laughs) These days one of the first things I do, is explain that I have a brain injury, and forget easily, have cognitive issues.
It surprises me how many people I come in contact with, that also have / do suffer from TBI. The invisible injury also seems to be the silent injury.
The more people share their stories, the more information and research can be spread/ learned.
Thanks Michelle for your blog.

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