The way others contribute to progress, or lackthereof

[Daniel]

This isn't written as a whinge about how someone mistreated me recently, it's more of an observation of how some people, in my experience at least, tend to carry such preconceived ideas about how to be around myself, someone recovering from brain injury.

Case and point was at a recent family meal, which included a middle aged couple : excellent friends of the family and people who I wholeheartedly respect to the point of considering like family.
The lady in the couple is a nurse, and someone who's used to dealing with people who have various medical complications, including brain injury. The last time we spoke to one another I was quite obviously effected - slurry speech, loss of train of thought, poor co ordination - a watered down version of encephalitis' mild 'the works' (obvious symptoms). That would have been a year ago, when I classified myself then as being around 70% health. The time I saw her before that, I was on one crutch, the time before that two.

This evening, when I said hello to her and she commented on how nice it was to see me again with the usual, polite and well received pleasantries exchanged, there was still, what I refer to as, 'that tone of voice' - fabricated or not in my mind, it's the type of voice which oozes the impression of being seen as simple or lacking in cognitive ability. I duely told myself to shut up and was nice in reply, thanking her and unconsciously answering in a clear and conscise, relatively normal fashion, that I now feel at 90% health, to which I noticed a small smile in the face of her husband as he saw that, despite good intention, she had overdone being considerate in that moment, but it passed without either of us making anything obvious, and I proceeded to welcome her as normal - ie with the respect I have for people who I've grown up knowing and who mum and dad are close friends with.

Still, 'that tone', is the bane of my existance at present - it just says to me, "I know you're still brain injured and I'm trying to respect you like Doctor Phil would tell me to", and that's actually the annoying part - being treated differently from how I see others being treated. I get 'that tone' of voice from shop assistants who recognize me from before, some of whom still speak in a condescending fashion (recently resulting in my changing my favourite music store to somewhere else - I didn't lash out, I'll just never go back there again).

I've had 'that tone' of voice from bus drivers, shop assistants, non directly related family, and also now former friends. I thought upon this, and realized that in a way they're still very much right - 'build a bridge and get over it' is a saying I'm familiar with for taking exception to something which is more or less not designed to cause direct offense, 'just kidding around', or, 'lighthearted banter' if you will, is all it's often categorized as being.

'That tone', 'lighthearted banter', 'kidding around' and so forth, are all the default reactions of people who, until that exact moment, are sure you're still not right in the head because they've seen it before and have been told that intellectual improvments are slow to never going to happen (post brain injury) - others on this site, like myself, know that to be bs - intellectual improvments happen all the time as long as they're encouraged to do so.

That last sentence is the point of my blog - people speaking in 'that tone' of voice, using 'lighthearted banter', just 'kidding around' and who ultimately suggest that a bridge be built and the point which caused offense simply be moved over, contradict such encouragement, irrespective of whether any offense is meant (like the clerk at my formerly favourite music store), or not (family friend) - yet, also ultimately, it is the job of the brain injured individual to overlook such prejudice (for lack of a better term at present) and to not retaliate despite that person making the sufferer be reminded of their intellectual deficits in that moment - how does one *not* overreact when made to feel inferior, regardless of whether they are actually lacking, or are no longer really all that brain injured?

I guess, in the end, one thing I'm learning is not that others need to be accepting of you, the sufferer, and the intellectual deficits commonly associated with this type of brain injury, but that you (sufferer) need to show others that you're no longer prone to some sort of 'hissy fit' when things don't go your way, or overreacting when the other person is simply clueless in a given moment of how to speak to you - I find that sometimes it's not even the brain injury at that moment which is the main instigator for someone not treating me as an equal, but the history which preceeds that moment and needs to be altered with a newer, more ideal mindset on their part by showing them then that things have actually changed for the better.

Again, a responsibility on the hands of the effected individual to be mature and understanding, yet with little expectation, again in my experience, of change having then taken place is placed on the shoulders of others - were it, they'd give me the benefit of the doubt until I gave them reason not to think that more improved way.

It's something I find slowing my intellectual rehab, anyway : people remember the past and treat me according to that, not first waiting to see whether acting in that fashion is correct by treating me like they would anyone else : I respect that, I feel almost back to that, yet I'm not quite there yet and I find that the way others are is hindering this, even if inadvertently.

Bugger. What a long road brain injury recovery is only to finally be made to feel like I need to proove myself to everyone else.

[Daniel]

Hi Cr, Great to hear your perspective upon this : yeah, I definately feel like the way others often are, is more indicative of their own attempts to comfort themselves and their own discomfort at being around someone (ie myself) who's got a brain injury. I think brain injury, while physically evident like with a broken leg, directly attacks the intellect and the very personality of the sufferer to the point where they often seem like an entirely different person.

Fortunately, I'm not in a position of being able to understand what someone with a non brain injury bodily malfunction (eg broken leg) feels like - obviously they could get every bit as deeply down about life as you or I do with encephalitis. My point is more that encephalitis steals ones ability to competently express their anguish and grief at the situation and, in my earlier experience, makes one come across as being very immature and childlike.

People I knew found this to be intimidating because not only did I have the wheelchair or crutches, like someone with a breakage, but I also had a completely altered personality - a complete simpleton, childlike and making them appear as being friends with a kid and no longer their friend.

The only people who admirably came to terms with this, and have seen it now return to relative normality (thank god for that) have been my family, who've stood by me through everything while others offered only excuses or criticizm.

I learned that family have been relentless in their compassion and have put others I once respected to shame, so I've purged those individuals from my life and dedicated my recovery to the infinate debt I owe family - lesson learned about respect for ones own family, but learned the hard way.

If I may ask you, what has been the most challenging reaction you've endured from someone in terms of them not quite understanding that your problems are brain-based and therefore invisible to the eye?

I recall going to see friends on the weekend just before I was discharged from hospital. We sat at a table in this guys backyard (10 of us or so) and, upon arrival, they were jovial and happy to see me but, as I sat and st-st-stuttered out some conveluded conversation which barely made sense, they began to look at one another as if to say,

"My goodness, Dan's screwed in the head"

then the implicative remarks were fired my way implying my simplicity, making them feel better about themselves at my expense, but I think only to comfort their horror more than actually enjoy a joke.

I've never forgotten that day and improved based, not only upon my desire to repay family, but also to ensure days like that never happen again.....ever.....I will never forgive them for that day...ever.

[CR]

I wish I could gather my thoughts like you have done to write this. I also find this to be true with most people in my family and it is baffling to me that there isn't more understanding when their is another E survivor that is in my family. I as you understand their uncomfort and maby willingness to fix me but situations seem to fall in the same catagory as you have suggested.I use to get defensive and now I eather don't say anything at all when I know my tollerance level is nill. Because I don't chose to react like expected to misunderstandings I inadvertently have caused striffe in our family.