It's probably the most debilitating effect of the injury, but I find it very challenging explaining myself to others. It's as though I know what I want to say, but finding the words and stringing them together to form a clear and coherent sentence is hard. I don't have this problem when I'm writing/typing, although I do take pauses every so often to reevalute what I'm trying to say. I've come to enjoy writing to people and prefer email conversation over telephone for that reason, but most people think doing the opposite is much easier and more conveinient. People sometimes tell me, can't you just phone? I don't care to explain to those why not.
Do you have difficulty explaining things clearly? - Headway
Do you have difficulty explaining things clearly?
49 Replies
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Hi AnthonyM - I agree, my TBI was over 20 years ago and, although things are better than they were initially, it's such an accurate, precise and easily understood method of communication - it has even improved my vocabulary!
In fact, it's such an expressive way to pass your thoughts and feelings on to others, I've written a book reflecting my TBI and life since. It hasn't been published yet, but - when it is.....
When I get tired, finding words becomes even harder - my TBI has also promoted obsessive tendencies, in addition to paranoia - I've had to create ways or 'links' to enable me to remember some words that are forgotten often. For example: I used to forget 'paranoid', having spent time in the army I recall it by thinking of a para with no ID, just how he feels when no-one believes who he is!
in reply to MrPBH
It's just a thought, but I'd like to write a book someday about my experiences, if in the very least I could contribute something unique to this world it might be that, I'm not sure anyone would buy it because so far it'd be just a sad negative story, but if I'd one day get better I'd like to describe what it was like and how I improved.
Jembly in reply to
Yep sure have a similar idea, but it is the start, get up and do it I need to get too. Yet my partner can write academic books and has done quite a few.
Not even written a blog of my own recovery in my words!
All the best am sure with help you can start from just a thought to write somethin.
Jem
I'm writing a book too! And I really struggle with it. Maybe some of you could team up for encouragement or even co-writing?
Lia
I'd love to
Sassybeing_1 in reply to
good idea! That goes to me too i wanna describe my life experience one day and people to know about it
Having to talk to someone is stressful and it's the most obvious sign of my disability since I don't have any physical problems. We tend to judge people on how well they articulate and interact with others, it's no suprise then I'm not high on that list LOL. To the rest if someone can't speak fluently that must mean they're stupid, they can't possibly know any better and you can't possibly explain to them otherwise, a no-win situation. Sometimes I wish I could use technology to speak, then they'd at last realise I have something important to say, but my injury is such that to many people their expectations of me are that I wish to be treated equal and I do, but it's hard when there are things you can't mask and you have to accept another blow to your pride.
One thing though, I wish people wouldn't screw up their faces in disgust, as if I should feel bad for talking and making them feel uncomfortable.
Jembly in reply to
So agree with what you say, and to think used to know a lot of what they are talking about but do not seem to be able to interact with it anymore as they can
Jem
Zippyzizo in reply to
I have the same problem. I am only 15 but my mind just flies in a million directions. I am constantly comming up with extremely complex contraptions and solutions to things. But when I try to tell my friends and class mates about it it all sounds like gibberish.
I have dyslexia so talking, reading, and writing is already a huge struggle on top of this problem. But one day I will find a solution to this problem!
i have the same problem and even more so on the phone as i cant see peoples faces
writing is much easier
i either forget the words all together, slur and stutter, or just get it all wrong and nonsense comes out.
in reply to bikerlifestyle
I do all those things, I wish I had a garbage collector to stop myself saying rubbish I didn't mean to say. The slurring, stuttering is worse when i've fatigued at the end of the day, at that point I don't want to say anymore. Also, if someone talks when I'm meaning to talk, it's harder to get it out right, as if the portion of memory being used has been hijacked.
I can definitely relate to that; I think it's the bit of the brain that plucks stuff out of midair that's responsible (eg I can't identify too many words beginning with F on demand, although they are there in my head and I can generally use them when I need to). I find that knowing in advance what I want to say helps a bit as it means I can rehearse it but in the moment I still often forget certain relevant (and sometimes crucial) elements of what I need to say. Unless I'm reading word for word, and I'm happy with exactly what I've written beforehand, articulation is pretty unreliable. It sounds like you have it a bit worse than me as I don't get people screwing their faces up at me but I often get treated like a simpleton. I do find the phone a little bit easier to handle than face to face communication too, but not by much.
in reply to fuzzyhead
Can relate to that, I routinely reherse (very tiring) even the most mundane things I want to say, especially if it's with unfamiliar people, because I know in the moment I'll have to try really hard not to lose the thread. It's quite funny, saying fragments of information I've already rehersed in my mind and just pressing the evoke button, but i'm used to it. I agree, phone conversation is generally much easier to handle, but I still struggle, what's helps me with thinking/speaking is shutting my eyes, those visual centres in our brains are very power hungry
hi,i do ave trouble when speaking,sometimes i start to speak and only half the sentence comes out,other times i just go blank, other times if im asked somethinginstead of giving answer i go on n on when it could be just a yes or no is needed,i find this realy annoying,but my familyand my friendsare used it now,
in reply to ricozoe
It sounds as though you can at least improvise when you lose the thread, something women (i'm guessing you're a woman) tend to do better than men. I know the reason why I can't say much at any one time, my short term memory is pretty bad. It's ok when I can read what I've already said, but you don't have that priviledge when speaking. If I could not care whether people understand or like to hear me, then I could concentrate on just getting those words out and improvise, but in the moment you consider social etiquette, how you're supposed to behave, etc. trouble is it just makes talking much harder, being considerate takes more brain power.
ricozoe in reply to
hi i just wrote replybut it seems to have dissapeared,maybe pressed wrong button or something,think my lazy brain saying go to sleep,so i bttr take notice otherwise itl call its mate headache,hope u feeling ok at this time ,take care .
in reply to ricozoe
I get this too. Hate it when I just get half of a sentence.... I used to panic, but now I think I'm ok with it. Tiredness is a huge factor. Viv
Similar to you. I sometines can talk about something digress then try to get back to what the conversation was about but have forgotten what it was.
What annoys me is when you are talking about your difficulties to someone whose not suffered and they say oh yes I do that. I think to myself yea but do you do it as often as I do.
All the best
Jem
I too have this problem! I hate it, I've found I avoid situations where I'll have to say more than a few words as I get so stuck its both embarrassing and frustrating when it happens. I have the same problem with phone conversation, if I have to phone someone I'll practise what I want or need to say and write down my questions etc, though this isn't fool proof and I've often just hung up the phone in frustration! (Not when speaking to family/friends..). Writing is easier as that pressure of responding is not there I think, so you have time to get things straight in your head and if you don't get a sentence right you can delete. Wouldn't it be handy if we had a delete option when speaking? Daft thought I know
no not daft brilliant idea lol,i cant write things down as thats another thing i cnt do, it comes out like scribble,most times even i cnt understand wat ive wrote,but thnk goodness fr my laptop, even if the spellings a bit off,take care .
in reply to Puffle
I do the same, but I still fall over backwards all the same, if you have short term memory problems like I do, you might remember what you wanted to say, but it doesn't always make saying it any easier. To stay sane, I tell myself that I knew what I wanted to say and my thoughts were as clear as day, I just couldn't say it, no big deal.
I also write down what I want to say before I phone officials otherwise the blanks are a nightmare. Over the past year my short term memory has deteriorated and I'm constantly searching for a forgotten word. It doesn't help when people tell you to use a different word. When you're bloody minded you'll walk through hell & high water to find THE word. But when it's a stranger and you're out in the world.....there isn't the time.....and then your head empties completely. I have, on occasions, blurted out "sorry you'll have to excuse me, I had a brain haemorrhage and I can't always find my words"......and that's usually delivered in a barely comprehensible fashion.
Still, it's more of a personal challenge nowadays.....not so much an embarrassment as a nuisance. I must say....although I wouldn't wish it on anyone.....it's a relief to hear from others with similar problems, so thanks Anthony & everyone. x
in reply to cat3
You're braver than me, I couldn't possibly tell someone I'm brain damaged, I don't think it achieves much anyway, they probably just think I was born this way and would treat me the same way whether they knew it or not.
I find it easy to be honest, I've improved a lot since my RTA (8 years ago). All come to me very easy = explaining things, seeing things from others eyes/mind, sharing knowledge, delivering advice, helping people's understanding, guiding, helping out. Yes sometimes we freeze but everyone's like that wwhether they're diagnosed or not, no ones a genius & there's no such thing as "perfect or normal", don't let the 'negative views get you down' these views only exist as there isn't much information out there & some peopl aren't willing to learn
in reply to
Good for you, I thought you had a frontal lobe injury, if so then can I ask you here or privately if you had bleeding IN the brain?
in reply to
Ta, I do..but I've adapted easily. On here's fine = no
Wow - I knew it was a common problem, but I've never really expressed, openly, the ways it affects me. It's been over 20 years now, with practice is things do improve, but - when tired - my speech is the first thing to suffer.
Technology does save the day a lot of the time, it helps cover the problem, but it doesn't stop it. In normal, every day life, it isn't always there to save us - personally, I find its best (for me) to calmly make people aware why I'm 'different'. If they don't understand or at least make an effort, they're not worth it.
By the way AnthonyM, I had a significant central brain bleed - along with much other damage.
in reply to MrPBH
I've never made anyone aware why i'm different, I'm just afraid they'll despise me for being so open. I normally go through a set of predictable stages with someone new...we meet, they treat me like everyone else, I act like i'm like any other person, they think I'm either stoic or shy, they encourage me to open up by using dry humour, I don't return the humour because there's no emotional reaction or I can't concentrate hard enough to understand the meaning, they get weirded out but still think I'm worth trying, at some point I'm forced to give a somewhat lengthier reply and they hear my words are somewhat jumbled and it's hard to make sense, they assume I'm just having a bad day, they try it on again, this time i'm worn out for whatever random reason and they reason they should keep their distance from me. And round and round goes the wheel...
in reply to
I'm rarely open, can't see why I need to be..I see others be 'open' & things go wrong for them, so I stand by my thoery. I act like others too, I'm quite shy (understandable if you look at it though = I always get pushed a-side, left in cold & people just use me for my warm-heart/kindness/care etc). Sorry to hear of this.
in reply to MrPBH
Thankyou for disclosing the nature of your injury, i'm interested in what makes many people's problems different compared to mine, I can only ask the hard questions about the seriousness of their injury and bleeding in the brain, however squemish it sounds, is one way of finding out. I just want answers to my own problems in the end and if it helps others along the way then great.
MrPBH in reply to
In many ways, although my wife says it would have happened anyway, I feel the nature of my injury would not have been as fully investigated if I hadn't done it myself! There has been some additional help, from a few people who are at the top of their trade. In particular, a consultant neuro-psychiatrist - that I had to wait for over one year to see - medically/factually confirmed that which I was unable to 'pin down'.
He was the first one to point out that, between the centre of the brain (where I had a bleed) and the front of the left parietal lobe, in the 'limbic' system, there is a nodule known as the amygdala. This control the emotional responses relating to fear/stress/anxiety etc. It sounds brave when I say I fear nothing, this is simply because the emotional pathway, causing the natural 'fear' emotion, has been damaged to such an extent that I don't know what fear is!
Fear/stress are important emotions - enabling you to live life whilst being aware of certain dangers (i.e. of a man with a gun); my pathway hasn't been wiped out completely, but the middle has - therefore I have a mild-mannered/calm approach that in no way prepares me for the increasing nature. This makes me unable to prepare for anything that may cause additional stress.
There are physiological elements that are needed in this environment, like all the natural things that people take for granted, like increased heart rate & awareness, sweating, an altered digestion etc. I seem emotionally numb, yet get over-emotional concerning other, seeming less significant, personal matters.
in reply to MrPBH
I've never been told what I've got, the most I've ever gotten from a specialist was "frontal lobe syndrome", an umbrella term for a range of problems related to the frontal lobe of the brain, from a psychiatrist, a treater of mental health problems but one without knowledge of the workings of the organ they're treating. The psychiatrist understandably couldn't elaborate any further, telling him the specific region of the brain affected wouldn't ellicit a meaningful response from such a person. I have been evaluated by neurologists, but they tend to stick to the physical side, again they're always overly cautious when treading into cognitive discussion, very little has been gleamed from them over the years frustratingly. I'd still like to know exactly what I have but it seems like a long drawn out process to get there.
I have little emotional reaction related to typical social interaction, but I do feel fear and I do get very anxious although I'm tending to mellow out a bit now. But as far as I'm aware (who knows?) I only have frontal lobe damage, I think the frontal part is like a theatre where emotions are played out, the amydala is like an instrument, no instrument no music, no theatre no experience.
in reply to MrPBH
I don't tell people, it's hard havin others trust these days (following my educational years & the "left in the cold" experience). My scar can't can't b seen, as I wear beanie hats all the time (medical purposes)..except the summer of course & I don't give much eye contact, so my dialated eye isn't as noticeable.
i use massive words i find it easyer to talk in big words
i dont know y but it works
shame i carnt spell em init
Have just read the opening part to this and i hate speaking on phone now, even face to face is so tiring, i prefer texts or email mainly as i dont trust my own memory and i'm very careful of getting stitched up as im quiet impulsive so by having it in writing i can have a record of it and also get opinion from my wife etc about stuff with out commiting to something i genersally dont fully understand. Does my head in (bad choice of words) when people say i no its ok ill just tell you, i dont want to be told i want it in email, text or the post so i can tak etime and understand stuff.
hope that i'm not the only one
in reply to Allsorted
Nope, definately not the only one, I can relate, I think our injuries were similar too.
in reply to Allsorted
agree talking is tiring ..think it is thinking that wears me out...just too much work...lol
I think the 'alone' bit has been implicitly as well as explicitly answered.
From my perspective, the things that interfere are my limited ability to recall facts, keep track of what I'm trying to say, not get distracted and inject "interest" into my voice and facial/body language. The first two in particular give me a vast sense of uncertainty that seem to play a part in the latter two aspects.
From my wife's perspective, I tend to waffle vaguely.
in reply to nemo_really
i waffle all the time..and dribble.it is embarressing..but as my sis said there are worst crimes than waffleing,lol
yes and it drives me bonkers
Every day with certain things well holding down a conversation. Sometimes a stutter comes out with surprise. Or I find myself repeating things. later realizing my mistake laughing it off in embarrassment. Although don't make a fuss about the way I am by accepting my way of living. I love to talk a lot for some reason, always have done since I was young. Well went from quiet to talkative in a matter of years. Not sure what happened there but am glad.
Some times during a conversation when I progress onto a different subject quickly because will forget so always feel the urgency. Then coming back to the first convo, it is asked so what we talking about again?. I show no emotion of embarrassment as have learnt to be strong in my normal to me life. Even though a brain injury my way of thinking has been normal like everyne else.
Only now at 27 years old have began an interest in to learning more about my issues and later found out.They all stem from the head injury. Knowing this sure has helped me work towards progressing now for my future. Where as before felt so alone. So a big thumbs up to HeadWay.
Loved reading what you had to say as it so mirriored what I go through today despite it being decades after my ABI.
Reading these last few written texts on speech and writing is so exciting to see as I see it is not just me and helps me more easily the need to accept it is me now.
I think to myself perhaps I need to slow down in talking but then other people take over conversation and so I do not finish what I am saying, as the pace of speech seems to have quickened or they are not interested in my slower or more precise speech. (Twice in my life I have had to be taught to speak, being born deaf then OK and after my ABI.) I then become angry with myself and think whats the point of talking, perhaps I should withdraw from talking, but it is not me. I admit because words fail me I go the long way round and or explain every detail. There are some sounds I struggle with so I use sentences that hopefully or struggle not to include those sounds.
In listening sometimes unlocks a memory I had forgotten and if can not say something then might forget what was unlocked and is most frustrating.
So like you, conclude writing is better
However I read back some of what I have written and think oh my how will anyone know what I am trying to say. I also prefer to use type electronic means as opposed to writing as my handwriting good for a while or so I think but days later struggle to read what I write. It takes me a long time to write as consently correcting I think but at least can use words I struggle with sometimes.
If my partner reads what I write will often change my grammer and spelling if spell check is not on. They were an english teach then university lecturer before retiring and carrying on writing speacialised dictioneries.
Aplogise is long but that is just me, boring I think sorry
Jem
Hi all,
Just been reading through this post and found it really interesting. I too find it difficult talking to people face to face well thats not totally true I find it fun but I can take to long to explain things then I'm sure whoever I'm talking to can get board. Funny though because since Bi I can get very impatient talking to others and board with the conversation and I'm sure I come across as rude, I don't mean to but it happens.
My memory is poor but it always was pretty bad especially short term even before Bi. I really have to listen and concentrate in conversations so I can remember whats been said and understand it then comment. I have learnt over time how to do this by putting a storey to whats been said and visualising stuff with in the conversation to help me remember it. Sounds complicated but it works.
Love this forum. N
im like that my friend ill talk to my kids or helpline a lot ill say something like a conversations
and ill say what was I talking about and my kids will say dad I couldn't understand you
and I say it dosnt matter m8 cause I don't no . what ive just said .it just goes out of my head as
im talking. and I stop . and don't no what I said .. all id say just be who you are .
we cant help it . and I no I ill be talking on phone and when im finishing conversation .
I havnt a clue what ive just talked about oh and I tend to go off track what I wanted to ask starts
then and at anytime I go on about something different all the time .ive sussed it out when your talking to someone and me with my type bi ill see the persons face like they havnt a clue or I don't make myself clear u no . or start ok then I drift off in to something else so again my friend and I say this from the heart its just normal with bi without this special site . id be lost .
and id just like to say we can only do are best .take care eddie
I certainly agree with you. It is really, really difficult using the telephone. Also I cannot cope with the unexpectedness of it ringing so I have an answerphone. If it is a friend who I trust then I can pick it up, otherwise I cope with life but I could not cope with unexpected phone calls. It is really difficult to talk and explain myself especially on the phone there is so little time and it is so easy to be misunderstood. Thank you so much for your sharing of this as it really helps me understand I am not alone.
Yes it is very difficult explaining how it is to live with a brain injury.
OMG - this explains my symptoms exactly. It's called aphasia.
I can write like a MFer (choosing not to now, lol) but verbally is very difficult. I also sometimes realize after the fact that I totally misunderstood what someone was saying/asking. Even when writing, though, I still use too many words to prove a point but don't have a hard time find a good vocabulary. It's just that whenever I try and be concise, it's common for folks to totally misinterpret/misunderstand me. Probably their fault right? lol.
To compensate, both written and verbally, I go into much more detail than what is probably needed. It can then have the adverse effect of people tuning out, getting confused (if being too technical) or just skimming/skipping if written. Like because I can't find a specific word, I spell out the entire definition of that word and even sometimes list all of its synonyms. What a shit show.
How can you find that balance!!??
I recently went to try and get back into speech/occupational therapy. Neuro doc wanted MRI w/Contrast. Sure enough, it shows scar tissue in place of when my brain should be in left temporal - she said exactly where language/speech should be processed. Explains exactly why I've had this issue.
EEG just showed ok, as we were worried the 'brain-farts' may be petit-mal seizures since they can be sooo severe sometimes.
So now I'm hoping I can just get some sort of treatment/therapy plan going to work with speech therapist and maybe TBI specialized psychologist and re-wire this damn brain. Have found legitimate evidence from many studies showing many different kinds of mushrooms/fungi can dramatically increase neuroplasticity (brain rewiring new networks for learning/improving) and neurogenesis (creation of new brain cells) - some legal, some illegal in US, so y'all can do your own research on that. But Lion's Mane is said to have large effect on neurogenesis.
I had a really bad (like getting revived on the helicopter bad) TBI in high school almost 20 yrs ago. Had a terrible stuttering problem for a long time. There was literally zero treatment after intensive care. One MRI and a Dr who geniously found out I can only smell in one nostril and that was the end.
So I learned how to cope on my own, but always had this hard time explaining myself, yet could woo any lady with a beautiful poem or letter lol.
then a couple yrs back, I got tagged smack on the back of the head on an airplane and it seemed to exacerbate the past injury. Couldn't work for 6 months. Went back to work prematurely out of necessity and struggled a lot quite. It's gotten better, but since I'm a tech consultant, I have to design pretty complex software, and be able to communicate what needs to be done to both client and staff. This is insanely hard. Sometimes I wonder why it's so hard for people to understand what needs to be done since I find it so easy to see what the solution should be based on very little information, but perhaps a combination of me being exceptional in that area and not being able to vocally articulate myself very well, it's just insanely challenging. And I also find it is the type of thing that exhausts me mentally so much quicker than anything else. Once that exhaustion sets in, especially if compounded over several days/weeks, I find myself feeling reverted back to immediately after the injury.
Something I have found to help for those who have difficulty with energy or getting mentally exhausted...
A good analogy I heard via a book (the Ghost in My Brain: How a concussion...) written by a neurologist who had a serious TBI:
everyone's energy is like batteries... with the best being AAA and worst being D, with cascading failover down each level & degrading level of performance, yet increased lifetime.
So, in normal person,
AAA batteries perform really well for 12-16 hrs a day.
If those run out, you have AA's, which still work pretty well, and the life on those lasts much longer.
But if only the AAA have been depleted, or if AA's have only been depleted a little, 6-8 hrs of sleep Completely recharges all batteries to 100%
They only ever dip into reserve C's if they're working like 16 hr days for weeks/months on end. even then, it only takes a short vacation to recharge completely.
---
Now, with a TBI, it's the same batteries, but different performance levels and life.
Let's say you have your AAA's that let you function just like anyone else. But the battery life only lasts, maybe 2-8 hrs. Performance degrades rapidly as charge is depleted
Spill over to AA's and the performance continues to drops significantly, at a much higher rate than normals. Let's say 2-3x as fast. The AA's may only last as long as a couple days or 2wks depending on severity of original TBI.
Recharging while still in A's is still fairly quick. Before depleting AAA's, 8 hrs should get you back, but getting down to empty in AA's may take a few days of regular 8-10 hrs/night to get all recharged.
Now, when we get to the C's is when the 'fun' starts. These can last a lot longer, but performance significantly reduced and we start seeing much more severe PCS symptoms, maybe very similar to the acute recovery stage. Not very effective with work, but can get by. Other things in personal life suffer big time, like significant other as we don't have energy to have healthy communication. Emotional/Frustrated very easily!! Socially awkward, etc.
Recharging C's can take weeks or months.
IF we dip into the the D's after C's are gone, it's like being a zombie. Can handle subconscious motors functions and can react to survical type situations, can cook some cup o noodles in microwave and eat em, or maybe handle physical activity/labor, but otherwise relatively useless, at least by any Wife's standard 
- It can feel like we just got out of hospital yesterday. Communication is maddening, like having a conversation underwater or with earplugs.
To recharge these and get all the way back up to AAA's can take weeks or months. Until then, it feels like starting over from the E.R. I dunno if the D's can be depleted. Not too interested in finding out what happens then....
It has been (still is) very difficult for me to say 'no' to clients, co-workers that I can't do something right away, or 'just go bang out' something amazing or whatever. I take pride in my work, and I love standing out by doing an exceptional job... so it's been really difficult to throttle that ambition.
So, hopefully this analogy is useful to folks. Once I understood this, it has helped guide me in first understanding where those threshold limits were, then proactively managing to protect my energy so I don't fall into this zombie level.
And there you have it, a complaint about using too many words to communicate a point with a super long post
I feel the same
so do goes to me! even though i know what to say in my mind, but the moment i speak i just babbler and it goes unclear that's why no one can understand me well
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