Why I'm leaving this site...: Well, it's sad it had... - Headway

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Why I'm leaving this site...

AnthonyMs profile image
11 Replies

Well, it's sad it had to come to this but I feel there's no alternative. I came here to connect with fellow survivors, those who've lived with the effects of brain injury for a considerable amount of time and understand me.

I've encountered some great people on this site who I'd say I could truly relate with. In the very least I realised that I'm not crazy, that there were people out there suffering through similar ordeals as me. I'll really miss the invaluable exchange of information that only this site could provide.

What I won't miss, is the general ignorance of brain injuries and more specifically what frontal lobe injuries do to people.

I'll share my thoughts on what I wish others without frontal damage would understand, if I have any lasting impact, I hope it's this. We are not children or animals, we're not stupid, usually we're quite intelligent, we might be naive through sheer lack of opportunity to engage in every human endevour others take for granted, but many of us still retain at least a shread of our former personalities that noone but ourselves can see. Please don't patronize us, we're not insolent children, we're in many ways more genuine beings than those with intact frontal lobes. Yes, we sometimes say things that others living in their own little social context find inappropriate, but it's because that filter everyone else has doesn't work in us and we shouldn't be reprimanded for expressing our feelings, the same feelings that others have but may choose to ignore for the sake of deceptive social contexts.

The other reason I'm leaving because of what I call "infighting" going on amongst those even with similar injuries to myself. I thought in very least that others with frontal damage would understand, but some people are eager to distance themselves from me, deleting their responses to my comments all for the sake of maintaing their social position and I can't help but think there's a tinge of insecurity I seem to bring out in others. All I can say is that it's sad that instead of helping others in a similar state, they prefer to please the masses, the "normal" people that they want to be considered as. It's a predicament that many of us face with brain injuries and especially frontal injuries, 99.9% of people we encouter don't have our injuries and don't like the idea of associating with brain injured/disabled people, so that stupid concept of peer-pressure forces people to behave in ingenuine ways, these people face two unfortunate choices, either accept the individuality of what the brain injury has given you or try to fit into the masses, it's an either-or situation. Survival instincts tell them to do the later despite their heart wanting the former. Tragic. But I know there are some here who are true to themselves, accept and acknowledge their individuality and it shines through in their posts, you are the reason I kept coming back, I just wish more were as genuine as you were.

Finally, the catalyst, a member calling me narrow-minded (comment delelted) and republishing a portion of my "About me" without permission together with a condescending tone. To that person, I say that not everyone had to agree with your views, if it causes you to feel insecure, don't shoot the messenger. I'm not here to gain enemies, that's a pointless activity. I'm strongly opinionated and don't want to necessarily please the crowd, I give my honest opinion that may sometimes cause others think outside of the paradigm they inhabit. It's sad that you can't take on board another perspective, acknowledge it and move on. How naive was I to have offered you my own book and then have this happen?

So I leave a little more informed on the full spectrum of people with brain injuries, their carers and I hope it helps me in future.

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AnthonyMs profile image
AnthonyMs
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11 Replies
cat3 profile image
cat3

No, Anthony, we are not animals or children BECAUSE of our social contexts and boundaries.

And, yes we do sometimes say inappropriate things...and the filter does occasionally fail.

At this point, however, the reasoning breaks down (in my opinion). I believe we SHOULD be reprimanded for expressing feelings which are offensive and/or unreasonable....but then forgiven....when we admit crossing the line....and apologise.

bikerlifestyle profile image
bikerlifestyle

having not been involved with your last spat, i read through it last night as an outsider party

and i have to say you pretty much accused everyone who is on benefits as being lowlife 2nd class citizens and that you were better than us.

i have no personal issues with you and i do try and monitor what i say so i am not offensive

( i have just deleted a whole section i wrote because it would have just caused this to go on and on, so for the sake of the site i have deleted it)

at the end of the day its your choice to stay or go, but people are going to have differing opinions and accepting that is part of life.

and whilst i disagree with a lot of your views above i wish you well in whatever you do

AnthonyMs profile image
AnthonyMs in reply to bikerlifestyle

Nope, I never accused anyone of being lowlifes for being on benefits, I might one day HAVE to be dependent on such a state system. But what I was trying to point out, what you missed, is that I don't WANT to have to be dependent on this system and I'll do everything in my power to not have to be. Does that make everyone else a 'lowlife' as you put it? Not if they really have no choice, if they can't find work or they're incapacitated, but keep in mind there are always those who are capable of working in some capacity but who deliberately choose not to and also people who are told they can't work by doctors, professionals, etc. but are lacking confidence/opportunitity, who are really victims of ignorance/lack of understanding of brain injury.

At the end of the day people will interpret things the way they want to. It's only now after reading these replies that I realise that I might have stirred some feelings. I can only say that I like debate and if I cause people to think outside-the-box then I've achieved something. Some people are stubborn and don't like the notion of differing views, that's ok. But there's definately nothing personal behind my comments, I might disagree with your thoughts, philosophy, etc and provide my own which I hope is considered by whoever, but I hate to be labeled a 'troublemaker' which I find an ignorant term often used on forums, sure there are trolls/spammers on other sites, but this is serious site for serious health concerns, I definately didn't come here to cause trouble, unfortunately it seems some who've never read my posts, who don't know anything about me are quick to judge and label.

Now I could continue to justify myself all night, but since you thought I accused people on benefits as being "lowlifes" which I've explained in detail above, can I also say that I didn't appreciate being called "narrow-minded" and patronized by the member, you probably didn't see his/her post because it got deleted soon after.

Anyway, I've never had a problem with you either and I wish you the best.

Danslatete profile image
Danslatete

I agree with the posting about the lobe damage.

Not sure who upset you and haow long ago it was, it doesnt matter to me.

I'm not sure i have ever shared a posating with you? BUT i am sad that anyone would feel agreived enough to want to leave.

I know people feel a bit on edge about benefits at the moment but i think that has more to do with the insecurities caused by the media reports.

I hope i havent caused you any upset, i have no idea how to check if i spoke to you before, but like you i say/type what i think, its a bit blunt at times but it is me.

AnthonyMs profile image
AnthonyMs in reply to Danslatete

Thanks for understanding and being one of the few "insiders" on this site I can relate with. I'm blunt too and I don't feel guilty for saying the truth, only people with frontal damage can understand that. I think we might have exchanged but I can recall specifics. From now on if i'm networking it'll be only with people who've had long-term severe injuries similar to myself.

Allsorted profile image
Allsorted

Hi antonyms just caught up on this, sorry to hear what's happened. Not sure of full story but like u I think debate and disagreement is positive as it makes people think. I wish you all the best with health & the future

AnthonyMs profile image
AnthonyMs in reply to Allsorted

Thanks man, I just wish people would lose their inhibition (often stigmatised as a negative trait, why?) and say what they really think rather than what they believe the crowd wants to hear..that way we could make some progress. Debate is good, nobody watched a current affairs tv show where there wasn't any. All the best to u and your family.

Bards profile image
Bards

As a POI I have frontal lobe- centred damage, but in no way feel like an outsider on this site. In many arenas (my local Headway for starters) I'm sure 'us front lobers' are in the majority and it's maybe those with more visible issues who feel misunderstood. The vast majority on this site seem very mindful of the variety of challenges.

It's frequently front-lobbers who have problems with viewing in the empathic round (guilty as charged, Your Honour...!). We can ba prickly lot, not least when processing info on a blog site; I delete most of my posts before submitting :-/

Bards

AnthonyMs profile image
AnthonyMs in reply to Bards

I hear you...I think I'll put a disclaimer on every post I make in future should I ever return. So true on the empathy front, I can live with memory loss but that's really hard to live with, but I'm tired explaining why I think differently...if I do explain people will soon forget and get offended telling me "that's not an excuse..blah blah blah"..at that stage you resign yourself to the fact others will never understand.

kjg001 profile image
kjg001

Anthony,

It was never my intention to stir up something so big, please do not leave the site obviously others are helpful to you and you are to others, I like some others I suppose do not know about the different brain Injuries and the effects.

If you feel that I am wrong, unpleasant, ignorant ( which I may have been but it was not intentional, I do not know about frontal lobe ) then please continue to use the site and just ignore me.

I am truly sorry, it was never my intention to upset or annoy anyone on here.

KJ

Bards profile image
Bards

Yes, AnthonyMs; the lack of empathy does make it harder to feel good about oneself in relationships, family stuff, even just birthdays, friends' challenges etc... but clearly you realise this, do what you can, and that's that. After 4 years I rarely explain; folk either get it, or we won't get on so well (former mates included). Constantly self-evaluating is worthy, but very, very fatiguing I've found, which can be counter-productive as it impacts my whole tolerance/irritability aspect. I dunno, does that sound familiar?

Sounds like your a striver who pushes himself so hard that it can sometimes impact on others; that's deffo my personality type anyway. If so, then we are who we are, and I dug in to protect my attitude to stay as mainstream as possible. As said, that can make us prickly buggers at times, but still our own prickly buggers at least thank you very much!

As you may have gathered I read posts here a lot, but am unable to post tactfully very much so keep schtum and tut a lot. 'Front Lobe Lurker' would probably be an apt description... maybe stay a member of that club at least ;-)

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