Being strung along

[Daniel]

I recently posted a blog detailing my 9 month experience at an inner city language school, and that it had ended on a somewhat cold note as they had seeked to train me to become a discount tutor (like $40 pw sort of cheap). I look back over this time and now see some pretty ominous signs which presented early on but which were overlooked by my now former employer.
When I began there, I was out of my depth : got everything wrong, did things which didn't need doing in order to fill the time and get to the end of my time there.
As time progressed, I became more proficient at the admittedly simplistic duties there and mastered the tasks to an acceptable degree after a few months of persevering (I was there voluntarily).

As I felt more capable, my employer approached me and discussed the tutor training course, resulting in bugger all hours for next to no pay and, essentially, a qualification which isn't in the mainstream and therefore largely useless elsewhere in any sense other than proof of having done something at the cost of alot of time in which I could have done something else.

I initially answered that I'd think about it. Then they seemed to figure out that I knew they were trying to get something for not much and I began to get the cold shoulder and 'not needed' on a couple of days until I politely told them to stuff off (polite because I also needed to ask the manager to be a verbal reference on my resume).

It felt like the entire 9 months had been them reassuring themselves that, if I stayed there and did largely unneeded duties, their patience would be repaid with gaining a tutor at next to no cost. Sounds fair enough, I realize, but I gotta live life aswell, and not stuff around in a place like that unless they offer something more substantial.

It felt like a violation. I was doing something unneeded and they knew that but strung me along under the pretense that I'd pay them back eventually with low cost labour : I work there free while they tolerate me and I ultimately pay them by floundering around? I was the volunteer, not them, right? (yes)

It was like that 9 month period was seeing how much I'd learned over the past 4 years. I promised myself after friends left, because of how spineless they are, that I'd never be taken for a ride again - they contacted me, post infection, in bo monthly doses to see if I was well enough to resume being friends with them again, then it was half yearly, then only at my birthday or Christmas time.

I learned to live with that. I don't enjoy it, but it's no longer something which feels unbearable like it used to - 'what doesn't kill you only makes you stronger', right? *RIGHT* (tick that one)

So, after promising myself not to be so gullable again, I was extremely gullable and nearly got taken for a ride by librarians (old work), after being strung along by friends who found every excuse to be polite on the surface, but evasive when it mattered.

I hate failing. I hate feeling used, like anyone does. I hate feeling lesser, also like anyone. Encephalitis has been a staunch lesson in humility and discovering that sometimes those who, on the surface appear attentive and nice, are often less so than the direct person who tells you up front to scram - at least they leave you in no doubt.

I realize that, in my more recent blogs/discussions, I've likely come across as progressively more aggitated or angry - I think a better word would be 'aware' - moreso of how much wool people were formerly pulling over my eyes and trying to get alot for little in exchange : a boss who wants cheap labour, friends who want to associate only with someone who can be at their level of health, even shopkeepers, who've directed me to a more expensive but essentially not much more superior product they sell as they, I think, saw a gullable man who they could milk cash from.

I get these and other various sorts of implications around life, and I realize that yes, I do feel angry and aggitated, I do feel regularly violated by people who think I'm not as aware as what is really the case. I even get it online from people who ignore me because of how far away from them I live - as though they think they're actually going to meet anyone they speak online to.

Encephalitis has been a lesson in tolerating anger, tolerating social isolation, tolerating health related prejudice, tolerating international type casting and the, at times, unjustifyable superiority complex I've received from some right before they've regularly posting online or something because no one else is speaking to them - I would have, but not because I'm easy or overly gullable, just patient - oh well.

I sit here, at my computer, knowing things are improving, posting videos which proove that to be the case, writing blogs and discussions I probably would have struggled to do when well. Maintaing an insane rehab routine, study habit, job hunting quest, yet still am I frequently made to feel inferior by many who assume things are the same as they once were, when I was actually less aware than I am at present.

I still regard myself as patient, as a nice and good person who's always willing to chat with anyone online from anywhere. I'm always open to meeting others in real life and hearing opinions which they so frequently have in abundance.

What has changed is my tolerance when people go too far - not with violence or course language, just a decisive end to them in my life. I don't feel unjustified in doing that, it's how I've been treated throughout this recovery, so why should I be any different from anyone else when I'm trying to recover in order to be once again like anyone who I might meet?

A major part of encephalitis recovery, I now see, is knowing where your limits of tolerating other people are - seeing that others inevitably try to manipulate you into doing what they want - even if they don't initially realize what they're doing - telling when you're being dismissed or treated as inferior, preached to about this, that and the other thing which needs to be done just to make them feel better about themselves or like they've done something good in the world when, in my experience, they've only ever lept to the quickest and often incorrect answer.

I've always stuck with my own decisions and trusted what I choose to do as being the right choice from the time I began to see that I'm my own person and not influenced by others - indirectly vindictive former bosses, money hungry salesmen, asshole ex friends.

I will never use anyone on this site with any selfish motivation. I will always try to do the same with those in real life. This has come from encephalitis because, beforehand, I was no different to anyone else mentioned above. I believe now, I am.

[Daniel]

I think people are largely intolerant of this type of injury because it's centred in the brain and, while there may be associated physical deficits (eg wheelchair useage, noticeable eye astigmatism and so forth), the most noticeable aspect doesn't come out until people actually converse with the sufferer and hear their shaky voice, loss of train of thought, odd or possibly immature personality, and (in my experience, at least), some seem predisposed to seeing the sufferer as below them and that they are in control of the conversation and we are merely participants they can practice appearing intellectually better than.
That's not been true of everyone, it should be said - some people who I've met have been fantastic, but I think those who leap to the superiority complex I mentioned just now are actually, and funnily enough, the ones with the worse psychological issues - belittling or putting down someone with a brain injury just suggests, to me, that the culprit must have that little self esteem that they latch onto someone with an intellectual/physical deficit and prey on that persons insecurities in order to vent some of their own frustrution over how life is treating them. Such people, I've found, are simply too stupid to realise their errors and instead feel like they've gotten away with something, when you've understood either perfectly or adequately, but not have had enough self confidence to defend yourself and are possibly too respectful to lower your standards to their level.

You do bring up an interesting point about the way the kids around your children see things and how society either directly or indirectly creates a prejudicial perspective of those with an intellectual disability and, obviously, this can become a factor in the playground. Do you mind if I ask - have your children often been subject to others teasing or suggesting something about their mother? If so, that's sickening and I hope the schools do something to identify the instigators of such tension and ensure that these people learn to properly respect people who have such problems before they grow into angry teenagers and dangerous adults. I find it ironic that you come across as such an incredibly strong willed lady and mother, who no doubt has similar children, yet it's these perceived 'normal families' (ie those without an abi in the parentage) who are actually more insecure and almost advocate their irresponsible lack of understanding by not raising their children to be less prejudicial.

I recall being in school (ie pre ten years) and some kid had just then learned the meaning of the AIDS virus and one girl got labelled with it and taunted daily as having the virus. I see now, looking back, that the kids could have cared less for the virus or disability meaning associated with it, they were just keying on something the poor girl was sensitive about - ie being singled out as different from her pairs and made to feel horrible daily - the AIDS thing, I think, was irrelevant, all that mattered was the effect it was having on her and that's what made the kids worse for it.

If your children are having trouble at school, then I think it's probably more a reflection of how much they care for you and the others have possibly seen that and latched onto it. I certainly would never suggest asking them to feel differently about you to change anything, but I think it does show that yours are children who are handling this situation incredibly well by not rebelling or taking it out on you to any major degree. I blame the parents of those kids who give yours grief and I dislike the social stigma which is often created in the media perpetuating intellectual prejudice. I think those in the media who do so are possibly the over educated and grown up versions of those little s***s who say what they do in the schoolyard.

Intolerance, I think, begins early in life and some grow into being intolerant adults and teach their own children to become intolerant themselves and perpetuate things further.

Just my take on it, could be wrong.

[faith]

your blog on "summarizing the end of my 9 mnth stint" explains it all. the constant self-doubt and double guessing simply were not part of my life prior to E.
before i got ill, i never doubted myself as a mum for example, and now i constantly question..."did i understand that situation correctly? could i have done something better? did i explain that properly?"
fighting to regain the same levels of respect that i had from my kids before E is difficult enough, without as you say, thoughtless and stupid comments by others that simply undermine me in front of my kids...
the perception from 'the world' that those of us with an abi are suddenly rendered stupid or incapable of understanding drives me spare! and my kids come home with it from school and in the media, and it can seem like a constant battle to get them to see that this is not the case.
their being so young means they are open to these inane suggestions by others, and on more than one occasion they have made similar comments to me themselves...
and although they are only children, it can take a lot of wind out of my sails, to remain calm and point out the absurdity of their comment to them...
so many people (ex husband, ex collegues, strangers up the street, the childrens teachers etc etc etc) have taken advantage of the situation to seemingly make themselves feel better.... and i simply cannot respond as i once did. my kids see this and take it as a sign that i am unable to respond at all.
i guess patience will win out in the end... they will grow up one day! humility, as you say, is a constant lesson with this awful virus. (cant say i overly appreciate its constant repetitive nature though!)
why do i second guess myself now??? partly because others are constantly second guessing me! partly because of the deep sense of insecurity that comes with the illness. and partly, i really dont know.
on a good day, i can sense my old confidence coming back, and a willingness to laugh at the regular stuff ups that come with E, i can smile as i drop yet another cup of coffee, or spill my milk (just cant tell when that is going to happen, used to find it sooooo frustrating), and i can see the funny side of it when i screw up at the supermarket and there is a long line of frustrated and cranky patrons behind me... some days i can even run a really cool monty python skit in my head...
it is when my world collides with the world of others who just dont see it as funny, or even tolerable that i get into trouble.
why is that the world is so full of intolerance do you think?????? is it so bad to be a bit quirky? a bit on the quiet side? personally i have always liked those with a good dose of eccentricity...

[Daniel]

Have you had anyone - a friend, for instance, try and take advantage of you in any way, while under the notion that you'd just do whatever they wanted out of some perceived superiority they felt they had (eg feeling superior in some way), only to discover that you're more than capable of understanding the situation and that they underestimated you?
It just seems like the default way of handling it for others to, not so much blame you, but avoid or get away from the situation (I've found) - I had a friend of 10 years who I saw every weekend when we and others all got together for drinks. He's actually a really pleasant guy, but he also has this tendency to try and appear as though he gets it and no one else does, yet he'd constantly try and prove himself to the others - his doing so came at my expense as he subtely ridiculed my illness a few years back in front of everyone else. The others all seemed amused at first, then collectively saw that I'd understood what he'd said and then they all began to feel guilty and avoid me under the guise of 'not having enough time' or something similar, which was bs and I knew it.
Point is, that this particular moment where this one guy tried to say something which I certainly found offensive (won't go into the what, it's beside the point), was one where I discovered that on that particular evening, while I'd been invited there as the same old Dan they had always known, changed in an instant to something else as they all saw how different I appeared both intellectually and physically. I was no longer someone they pitied or wanted to help, but the butt of their evenings humour. It was like they'd said to themselves, 'either he's okay and we're friends again, or he's screwed and therefore the nights entertainment cause he's too witless to understand'.

I never expected them to just turn on me like that, it went against everything I knew about them since meeting them at highschool. To change so suddenly when it became clear to them I could not meet their intellectual standards, became apparent when this one guy said what he did and the others first tried to laugh it off, then saw I was pretty offended, yet did nothing to help out, they just went quiet and I left not long after and haven't really seen much of them since, some at all.

I paid for their attempt at humour, is how it felt : they failed to be funny, and I learned a brand new definition of the term 'social isolation' - but, rather than wallow in grief, I did something about it and began to improve over the months thereafter while that evening replayed over and over in my head and other, more mundane activities (what I had for lunch that day, for instance) were all swallowed up by the memory deficit, yet this one night remained clear.

I've been in that group of people while we've purged a clinger-onner-type friend (one we wanted to disassociate ourselves from but were too gutless to tell up front), he was verbally taunted in subtle ways, then isolated and left alone indefinately. I prayed that would never happen to me and joined in with the others out of a fear of that happening as I saw how our group operated, yet never considered that I was always only ever the introduction of one variable away from being ousted myself. I label that as being insecure, socially blind, and also gutless.

Encephalitis has been a remedy, of sorts - like anyone else who's in recovery/recovered, insecurity has been an intense lesson, but it's one which I'm becoming numb to. I'm also numb to being out of the social scene - the debt owed to my family superscedes that and that comes first, so I don't really care anymore about it, where before it was the measuring stick of self worth.

The voluntary job, it felt to me, was like life itself giving a final test of whether I capitulated to a half baked employment solution because I didn't trust my own better judgment and craved the attention of others like was once the case, and was there enough....I'm loathed to use the word courage, but I do so in a descriptive sense, to try and find a better alternative and try and succeed at that?

I've never gone back to those old friends, nor regret that decision. I've made choices in this recovery which have yielded results I'm happy with also so, if the mind asks why a voluntary job offering a laughable payrate to do something I hate should be even remotely considered, previous experience suggests that following initial inclinations of parting ways with it seemed like the best choice.

Bottom line is learning to trust your own judgment again based on what's gotten you to any given point - to have taken that job would have felt like going back to my old friends : taking the first opportunity to come my way even when that opportunity appears largely indifferent to my very existance.

Which things in life, which you're comfortable discussing on this site, do you feel you now second guess yourself about, and why do you think that is?

[faith]

Daniel,
I applaud your decision. primarily because i myself find it more difficult to make decisions since E. where i once trusted my own judgment implicitly, i now find that i doubt myself. your blogs have been invaluable to me in my own coming to terms with E related changes to my life and my self. you do deserve to be taken more seriously and your time should be spent on those things that will give you a return and enhance your life in the ways you want it.
thanks for sharing your thoughts and your turmoil. i find that people who know i have lost some of my inner trust do try to railroad me more than they used to. its a shame really.