Did you feel like a charlatan because your TBI was

[CrookedNuts]

Hello, first post here as I begin my integration into a new lifestyle. Here's a quick overview for context, and then I have a couple of questions for the community. The first question might be the most important right now, as it relates directly to why it took me so long to seek help and why I've been lurking here for so long.

Anyway...

I lived in China for several years and things are... different there. I was knocked off a bike three years ago and fractured my skull. The external damage healed fast and I was back at work in only a couple of days: I was supremely fit back then. Martial artist, cyclist, runner, healthy eater, blah blah blah. After a few months, my behaviour began to change. I slipped slowly into depression, anxiety, alcohol, sex, and all the other symptoms which compound each other so comprehensively. (Looking at the symptoms as I now understand them, I was very lucky to have mostly dodged the spontaneous aggression and serious addictions that often follow a brain injury.)

Eventually, I recognised I was having some trouble, and thought a good way to self-medicate was to isolate myself for a few months. Remember, I never had an MRI after my injury and there was no medical follow-up whatsoever (like I said, things work differently in China.) So when I was given the opportunity to relocate from Shanghai back to Europe for work, I decided, with the kind of impulsivity that was beginning to characterise me, that I would cycle it. I would spend the best part of the year alone, on the road, in an attempt to starve out the alcohol and depression. I had no idea that there might be an underlying reason for the increasingly reckless way I was living myself, and I thought I could treat it myself just by confronting it head on, and giving myself no choice but to fight it out.

To my surprise, it worked. For a while.

For the first four months, across China, it really did help. So I got complacent. I took a bottle of strong Chinese liquor and drank it with a group of locals, and overnight all my hard work was undone. Everything fell apart again, SO FAST. Within two weeks after that, I was drinking two bottles of vodka a day, after a month I was in prison in Kazaksthan for a week, within six weeks I had everything I own stolen (apart from my boots), and got deported from Azerbaijan, then attempted suicide when I returned to my job in Europe, and then was registered as a high priority missing person when I disappeared in Plymouth for several days. All that before my first MRI, about 3 months ago, which immediately highlighted the issue. An old contusion in my frontal lobe, caused no doubt by that crash I had in Shanghai, and I'm only now learning to deal with it. But I could use a few pointers.

The first is this:

-Did any of you feel like, I'm not sure how to put it, like a charlatan for having an injury that no one can see? Or more to the point, have you ever felt like your injury doesn't 'qualify' somehow? I read a lot of really deeply powerful stories here, and I feel like mine doesn't compare. I'm not fishing for compliments or validation or anything because I'm aware that that's a ridiculous thought, I'm just curious if anyone else has had it, even though you recognise it's ridiculous?

-Second, are you aware when you're behaviour or cognition is out of character? Are you able to spot when your mind is kind of tricking you? Or do you only realise it afterwards?

That'll do for now. I'll be here a lot I'm sure, but thought I'd introduce myself and start asking the questions that I'm wrestling with as I readjust.

[RecoveringH]

Your story reminded me of the book by Dervla Murphy - Full Tilt - Ireland to India with a Bicycle when you described all the adventures you have had. What a rich experience. Are you going to write a book?

Headway has a great resource here regarding frontal lobe

headway.org.uk/about-brain-...

Hope this helps to answer some of your questions.

'Injury doesn't qualify' - It's not something I've pondered on.

An 8 week MBSR/MBCT mindfulness course can help with awareness (your 2nd Question)

Good luck with the readjustment, be gentle with yourself, you only have one body.

Best wishes

[CrookedNuts in reply to RecoveringH]

I've already started writing it. The working title is Derailed: How To Fail On The Silk Road. I haven't got a publisher yet, but it's well and truly in the works. Writing it is kind of cathartic actually.

Thanks for the link!

[swedishblue in reply to CrookedNuts]

Just thought I'd mention the 'Writers and Artists Year Book' as a good place to start!

[Hidden]

All i can say is NHS also sometimes does nothing in UK-even tho i had a compressed fractured skull as a 2 yr old(LOC half hour),was just given X Ray(no scans then,they were just bothered about skull!),6 weeks of Phenobarbitone,and as a linen strike was present was sent home to 'get over it'! So is as bad in UK!

And i aren't always noticing the personality change-and no amount of 'mindfullness' bullshit the NHS peddle to death,as if we are just mental health('addicts in recovery'!),works!

My most annoying words in UK are 'recovery'(i'm not a drug addict!),'wellbeing' & mindfullness!

[Broken_Doll in reply to Hidden]

I am totally with you on that.. the term “mindfulness” is so “on trend” and meaningless..

[Hidden in reply to Broken_Doll]

Glad someone thinks alike!

My local council operated MH group(they stopped funding any worthwhile one'!) are so hung up on mindfullness,and using words like 'co production'. They get paid wages by council,yet want everyone 'volunteering'(doing all the work!)on their 'committee'(basically a get back to work scheme for brainwashed who believe in 'mindfullness'!).

[0101 in reply to Hidden]

Many of us out here I realise.

I know some utterly wonderful people who have seen their whole service - in most areas of life - education/community development/mental health/health/physio etc etc gradually become reliant and then all but in name 'voluntary' and all this entails. One lady from a local charity I've come to know well knows how much I'd love to be working hard as billyo again but is conflicted as the more we as a society accept not paying and valuing people for skills, experience and their sheer s*dding hard work day after day to run basic services the more we seem to rely on it and this goes under the radar. Even nursing, core community and probation services. I went for interview a month or so back at one and they're so overwhelmed/badly run/underfunded/haven't enough experienced skilled staff they were very keen indeed so suggested I ran a regional infrastructure project (!) as a paid member of staff, and also 'volunteer' too. I contacted two relevant referees (one travelling abroad as he's a University honcho) and they got back to me immediately. I'm still waiting to hear from the 'charity'...

Moons ago I volunteered then was paid to run a 'silver surfers' IT project. It lost funding (oddly some EU) under the guise of being 'self-run' and 'run by the community' and 'emancipated the learners to direct their own lifelong learning journey'. So I lost my job and got a much better and well paid one in the big smoke. The learners with no training or skills and even dementia were left to it. I was volunteering at an advice drop in at a local charity a decade later. Lovely guy greeted me having recognised me and was still devastated at the muppets 'running' the 'service' who knew nothing but had been gifted 'titles' like Project Manager and IT tutor when they knew very little and only shouted at people to 'teach them'. Yet to all intents it was still the same project delivering great community outcomes in annual reviews...

[RockyMountain]

Ahhh yes well...

I can identify with the charlatan queasiness, as people would never guess I also have frontal lobe damage following a serious cycle accident. The last thing I want is sympathy. The reality is we are not charlatans. we are survivors.

In regard to the recognising when I'm going off piste, sometimes I get a weird feel of unconnectivity if you will, I know I'm off track, but stuck on it. Can't get off, buckle down and follow the flow.

I really do recommend you apply for a headway brain injury card for when the inevitable happens, it's proven invaluable from time to time when the poop flys.

Take care, stay strong.

[CrookedNuts in reply to RockyMountain]

Yeah, unconnectivity sounds about right. I'll apply for the card. Who knows, I might even be able to wangle a discount on a new cycling helmet with it. God knows I'm gonna need one now, huh?

Thanks!

[RockyMountain in reply to CrookedNuts]

New cycling helmet I wish....

My smash was somewhat calamitous. Unfortanatley my balance is shot now.

That look right over the shoulder would give me the collywobbles for sure and I'd be face on the cold wet tarmac again... Shudder.

I get my adrenalin fix elsewhere thesedays.

I didn't have my helmet on, during the litigation process it was argued I was to an extent liable. That argument was kicked into touch and it was argued in my case the helmet could/would have exasperated things due to the incremental circumferance.

But gosh, I do miss my bike.

Good luck in the saddle, stay strong.

[0101 in reply to RockyMountain]

Sorry to jump this thread again but hadn't grasped how we use the most astonishing weaving together of movements, skills and senses until after I couldn't. My work colleagues were a special bunch with meetings a mix of truly gory discussions, risk assessments etc, then neatly packing that away and switching gear (excuse the pun) to travel back as ourselves not subjects or statistics. I think everyone learns if they're fortunate how to deal with near misses as much as we can and manages to be alert to the need to react quickly enough, with the road awareness and consideration to others and the space. That rush of adrenaline after dipping out of the way, stopping or avoiding a crash into things unmoving or the moving ones with no spatial awareness. I like a nice bit of tarmac but not embedded up my nose sniffing the bitumen or the daisies. The time I was hit has suddenly swum up in my mind. On a spangly proper cycle path sharing the footpath a few metres away from the road at the time and it was so clear cut the police were delighted to talk me through the physics of it by the pattern of my injuries. Pity the nice lady driver drove off after dumping me at the A&E a mile down the road.

But your mention of that quick check over the shoulder was so vivid - it's exactly that manouevre I can't rely on so bike gathers dust for now. Current best hemlet evidence/research covers such a wide range of situations and is still inconclusive or yes exacerbates outcomes depending on type of collision and all the inputs (to my knowledge) so can't be used to put liability neatly onto the cyclist. So glad you got that kicked into touch

[RockyMountain in reply to 0101]

An elequent response, I concur with...

"we use the most astonishing weaving together of movements, skills and senses until after I couldn't".

However.. Of my particular circumstances.. I was T boned on a cycle at 27mph.

No matter how well honed any superhuman abilities the human body seems hilariously devoid of cool features.

We can't fly, don't have a mechanism to stay alive, and are not particularly strong, though we do have big brains.

That may give us an edge, but we don't really seem to possess any special abilities that give us invincibility, when the preverbial SHF moment arises.

Stay strong

[0101 in reply to RockyMountain]

Well I am now imagining some Marvel superhero RockyMountain with one of those Swiss cheese ski outfits but in a grey steel colour with rocks on and your legend is 'stay strong'. I will try. Other kind people have designed and built things that allowed me to fly and breathe unaided and I can strap metal braces round my legs to walk.

Being invincible? That was the name of a ship. My grandfather's ship went down and he as a teenager and his fellow survivors scavenged for food for months on a beach. That was a SHF moment too. I read about it in a big book at their house and realised the old man I knew was one and the same man. He is still very much alive in my heart and that's invincibility (and immortality) for me. Superhumans are hiding amongst us like slightly more butch looking imps and pixies (and on a different scale). When I went to huge galleries and rocky edifices listed the great and the good I always looked to see if lovely anonymous is mentioned and I wonder who they are

You too

[Elenor3 in reply to RockyMountain]

Saying you’re liable for your injuries for not wearing a helmet is a such a cheap ploy to get out of paying compensation.

I suppose they’ll soon be saying that open top sports car drivers are liable for their own injuries for not choosing a car with a roof - or should they be wearing a cycle helmet when the roof is down? They’d be travelling at a much higher speed than a bicycle with no head protection if they have an accident.

[RockyMountain in reply to Elenor3]

Yes Elenor, your right of course, or even a pedestrian for not carrying a torch and fluorecent reflectives. Fortunately for me I had old school representation from an established law firm rather than a quick buck ambulance chaser outfit.

Stay strong.

[0101 in reply to Elenor3]

It's eye opening to look at the way 'risk' and liability is sometimes assessed and how arbitrary it appears. It seems to depend on the power balance and what people can get away with implementing/evidencing/ability of their legal defence.

I spoke to a 'cycling in a restricted zone officer' the other day; dressed in anonymous black fatigues and a camera on his chest. I saw him stop a young woman who noticed I was looking and smiled, saying openly she wouldn't be able to afford a huge fine (hence partly why she uses a bike). She had been cycling very slowly, stopping here and there and passed around us, mostly unnoticed. It was odd. They had a chat and we all smiled at each other but the whole thing was done with weary politeness. He then shouted 'oi' at a group of young teenage boys milling around as they unlocked their bikes en masse and rode off oblivious. They ignored him and that was it. He was a nice helpful guy and I asked him if he had the time to show me the signs - stuck up about 8ft up a lampost in a mass of other vital signage that doesn't stand out to me in our pedestrian 'zone'. I had looked on the local council site and also on streetmapping to find them and the 'zone' after one fine caused outrage on twitter and with cycling groups. The other side of the zone is confused and he couldn't describe the boundary. You'd perhaps only realise after you were fined as the pavement doesn't delineate clearly. I can't ride my bike currently - but the cycling environment and message is clear - we don't want you here. No wonder the town is a mess.

I have been knocked off my bike and also had near misses with dangerous cyclists as a pedestrian, but these are our spaces!

[Elenor3 in reply to 0101]

Me too. Signage can be so hopeless sometimes. I'm not sure that the people who design cycle routes and pedestrian zones have ever cycled or walked anywhere.

[0101 in reply to Elenor3]

Don't get me started!! 'designed' sounds thought about somewhat. There are supposed to be audits as part of the process but they often are patched onto existing layouts. 'They' and 'the other' were called NMUs (non-motorised users) and then VRUs (vulnerable road users) in meetings. Er shouldn't walking and cycling and simple effective ways to move be the default where possible? Enouraged and made safe? The road hierarchy is definitely set round my way and it's sadly a bit backwards in many areas.

I need to get rid of the stack of promotional and super space age productions I have gathering dust showcasing new road schemes and developments I sometimes had to assess. Not. One. Person. Anywhere. Oooh shiny though. 'Aspirational'...'Award Winning'...

I was in a central London taxi last year with an entertainingly ranty driver talking of how the medics at one central London hospital had written angrily to TfL about cutting off their access to motorised vehicles as part of 'pedestrianisation'. Laudable. Seeing as I can't walk sometimes at all or far, how were people supposed to get to or from their appts? From a bus half a mile away? We don't all have motorised wheelchairs and access for those is still patchy. And some hospital transport now requires you to be on morphine pumps or in a 'prone position'...

[bexx87]

So first off I'm appalled to say I had to Google the word: charlatan but now I understand what it means I can relate,

I have my MRI (pictured), the Latin medical terminology glued all over my office, home and various social sites with the qualifications, headway publication and various other achievements as proof to anyone who doesnt believe me (both NHS and non NHS) and the reaction of anyone I tell that does believe me (as you cant make my life up if you tried) is : *bows down and kisses feet*

I have done speeches and talks to massive amounts of people to say look I am living breathing proof you have sustained and mash and entire section of your frontal lobe, withstand puberty in a coma, be a child of a alcoholic, withstand having both lungs collapse in a coma, start life as a premature baby and still have the drive to go to college for 10 years, learn how to drive, help out source your own job, manage all you finances, live independently and hold down a 37 hour a week civil servant job all without help from the NHS

I have had so many people tell me my life isnt bad as ivd been through worse I nearly committed suicide twice because my manager threatened me with the sack over my mental health deterioration, hr/oh had KITTENS over it

So your in the right place if you want to be surrounded by people who have had to withhold and withstand doubt from the world amd proof them wrong on a daily basis so welcome

[lcd8]

ALL brain injuries are important, particularly to those that have them. So please don't ever feel that yours is not as worthy of compassion as anyone else's here. I have a congenital BI that I was born with and it would be easy to feel that, because many here sustained their BIs in an accident, I am 'different'. But in the end I think there is no difference in how our BIs make us feel and what deficits they might leave us with. So...we're pleased to have you with us. Personally I can tell you I'm not aware of when I'm behaving irrationally or 'different' from those without a BI, even though my walking looks strange to other and my balance is awful. To me it feels completely normal and I blend into the crowd, even if I don't. I genuinely don't realise the problem unless my nearest and dearest comment on it.

[CrookedNuts in reply to lcd8]

That was very eloquently put, thank you!

[RockyMountain in reply to lcd8]

Your spot on in you saying " But in the end I think there is no difference in how our BIs make us feel and what deficits they might leave us with. ".

All I can proffer in saying is that in a TBI it is a new reality, so when the new reality/normal doesn't match up with the old persona you are aware of the new self and the differential.

I am pleased I read your comment lcd8 it has made me think about your situation.

Stay strong.

[Broken_Doll]

I didn’t give you anything on FB messenger other than the truth Bexx. Other people have things to deal with too. I myself am going through hell at the moment but I choose to keep it to myself.

[randomphantoms]

Hi and welcome.

You are not alone.

Compared with some our members a simple fractured skull may not seem like much but my problems come from a simple fall and fractured skull .....and they are just as real but everyone here understands.

After my fall it was over 3 months (I can't remember how long it was) and only because I couldn't stand the pain and went to an optician who wrote a report "non responsive pupil" that I had an MRI and that was here in the UK.

There does seem to be an expectation that a fractured skull is just like any other fracture and more or less 6 to 8 weeks to heal.

Hopefully your frontal lobe damage (like mine) isn't sufficient to be classed as clinically significant. It still exists and takes managing even when you have very high levels of awareness.

I know I haven't answered your questions but it is very late so please forgive me I just wanted you to know that you are not alone.

[CrookedNuts in reply to randomphantoms]

Hey, thanks for the response, and the reassurance.

I also have the issue with my pupils, but it wasn't spotted until I was examined by a neurologist after being picked up by the police one night. It's crazy that no one noticed it before, not even me, but I'd had it for three years. The neurologist only spotted it because she was actively looking for it, but now it seems so obvious. Looking back over all the photos I took in the three years between the accident and the diagnosis, I can see it in every single one. If I'd spotted it earlier, I probably could have saved myself a LOT of trouble. But that's hindsight, and it's always 20/20, regardless of pupil responsiveness.

[0101]

Late to parade but hope you have progressed as you've wanted. I am Tim Booth with The Charlatans on this. Sometimes I'm on stage with them pretending enough to get by. Mine is an ABI not TBI. I've had concussions but nothing like yours.

Beware comparing yourself to anyone with anything but it is hard not to and it's human to try to triangulate through life and fit in or live with and be 'normal'. Hierarchies of ability and disability often aren't that helpful. But for internal things like medical symptoms or thoughts and feelings, we only have listening, speaking, signing or however we can communicate with others where we need or want; trusting ourselves, them trusting us and belief to go on. I felt like a preverbal child at times trying to express something wrong as my external symptoms and expression of what was happening and 'pain' was viewed as emotional distress or undefined. I was too ill to be terrified and appeared drunk, sleepy or stupid. Vomiting was dismissed. A junior doctor had spotted my meningitis but was overruled and I was given painkillers for my temperature, confusion, neck ache, sent away and it was attributed to 'stress'. Was it all real and which parts? I picked up bits after I was found and taken to hospital that someone I barely knew screamed the ward down that the barely responsive lump in the bed was a bright intelligent active woman and someone must try to urgently find out what was wrong. I only realised it was relief and joy I was feeling after the lumbar puncture she demanded with nice neat results helped the medics and the antibiotics and antiviral drugs meant I came to in a weird way as my brain wasn't being attacked by the infection any more. I was here and aware. I could sit up. I could see and smell and everything was weird to touch. It was like picking up objects at the bottom of a swimming pool. It took a while to realise the bag next to my bed needed to be emptied, and eventually by me. It was so exciting to stand up and it was like when I learned to ride a bike for the first time. I was asked if I had always walked dragging my leg and I was entirely unaware I was. My visitors hadn't mentioned it. I was gutted. You can hardly see it now unless I'm tired and it all goes to pot. It's all pretty well hidden and on the days it's not I hide it myself to try and cope. I want to hide it less and less. I don't judge others for their disabilites so it shames me that I do it to myself.

Philosophers are interesting on this and how we imagine ourselves, others and 'being'. We can only guess which is frustrating and joyous in turns. Blood tests and MRIs help to gather data to hint at the picture. There's so much emphasis on assessments, and qualifying for this and that, so it's easy for you and the truth and reality of how it affects you to get lost. I have rejected a powerchair for a complex mass of reasons for now, but partly as 'it's not that bad' and 'try harder' and I am not missing any obvious standard issue parts. These are very powerful messages I realise I had and have swallowed them as I try to adjust. Then I read and meet others who have no element of choice and are forced to use things through need. And accept and maybe enjoy them as it's part of them. I valued and loved many with obvious bits missing as it was them and made them who they were. Need and want have got mixed up somewhere and there are some very skewed views and invisible disability sits right in that place - let alone other neurological issues like congenital, developmental or degenerative issues. You shouldn't have to prove anything to anyone or justify your existance bar the simple hoops we need to jump to get or use a service, or progress in jobs, or have adjustments or necessary care, or equipment or to drive a car safely.

I too read a lot of really deeply powerful stories here, and I know many of us feel like ours don't compare. It's been the most surprisingly unexpected thing for me. Most of the time I try to catch myself negatively comparing to how I was before, or to others and my contemporaries or future 'self' but it's taken five years to not keep trying not to. And obviously not always and I now hope and rely on others to see and know me and steer me if I'm off course or am going about in confusion.

Our characters change over time, and with new experiences anyway. Others have said - it's the unknown and the time taken to realise the impact after events or whether you were born with it and have never known any different and it's always been 'you'.

We're not set - it's being supported and helped when sudden or gradual changes happen to us and to others and being aware to know if changes are happening and if they're positive or negative, and what we can do to live as well as we can.

Hope it's happy wrestling

[sealiphone]

Others find a TBI difficult to understand given it's hidden nature and this often leads to them believing you're a charlatan

However what do we have to hold on to, an invisible dysfunction and we don't have the language to put it into a manageable box, so we are in fact the mirror image of the observer, with normal driving the narrative.

As for impulsive behaviour in the moment I think it can be impossible to mitigate it. Perhaps the best we can do is ask for someone's opinion if you're thinking about any significant decision but of course you may think they're just wrong.

No solid answers here, which may be the best we can achieve.

Does all this sound like a Zen Buddhist, in the moment?

[CrookedNuts in reply to sealiphone]

Interesting. And who knows, perhaps Zen Buddhism is the way forward. I'll add it to the list of stuff I secretly suspect won't be of much benefit but feel compelled to try anyway.