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Adjusting
I got what I call the, 'adaptation copout craptaculer' - spiel from my neurologit about 2 years ago now, almost to the day. I went into the hospital having fooled myself into believing he'd fall over himself with surprise and interest about how much I'd then improved. He did the complete and utter opposite without being directly offensive,
"Your eye astigmatizm is still all over the place" I can still hear him tell me in his thick, South African accent (the accent makes the memory clearer in my mind). This came before I asked if a full recovery would be made and he answered by widening his eyes in disbelief at my apparent stupidity and simply shook his head before beginning to smile, encouragingly, while informing me that further improvment would be condusive to, 'adaptation' - in other words, no further improvment would be had, my brain would simply get used to the damage and learn to live with it. He said this with eyes that implored me to receive his words like good news. The tone of his voice was almost condescending and stunk of the love I still believe the man has for himself.
After leaving the hospital evaluation, still then requiring the use of a crutch, the other thing he said resonated in my mind and replayed over and over,
"Get out there and just do it" he said while failing to suggest to me, not what 'it' might actually be - I realize it's up to each individual to find their own way in life, but to instead suggest to me some kind of disability service catering for employment opportunities for the disabled. He simply overlooked that and said "go do it" after telling me I was more or less irrepairably brain damaged on an indefinate level.
That seemed like a contradiction - being told to go live my life and just 'do it' despite also being informed that I have permanent and irrepairable cognitive and physical function : how can you just pick something while needing to take variables like that into account?
I went for my daily walk on returning home from the hospital and the degree of my former disability became then even more apparent than it usually was as I had his words replaying over and over in my head and I wondered still how to define 'it' - the thing he suggested I do.
The sensation of being outside at that point felt similar to how being drunk while in town and trying to hide that fact from the general public was prior to contracting the illness. I then knew what activities were high risk for exposing my intoxication and I became very nervous at then being found out as drunk while in town.
Encephalitis has been the same, I've found. I don't want people in public to see me as different or brain injured and, therefore, going into town has felt like being drunk while everyone else around has been sober - the drunken tosser who others point and laugh at while he (ie me) doesn't appear to notice the looks and mockery around.
The word 'adaptation' has been like the proverbial kryptonite for me (ie bad stuff - Supermans bad stuff, right?) in that I've walked everywhere trying to appear like anyone else but hearing the word 'adaptation' resonating in my mind like some sort of sadistic walkman which only I notice and everyone else is oblivious to seeing.
Feeling nervous and out of place as I subliminally reminded myself of how brain injured I used to feel I appeared as being, made me an inherantly irritable person to be near - not violent or verbally abusive, just tense and cold. Everyone was judging me negatively, I used to think - everyone was labelling me something awful like retarded or mental or like a freak, yet no one actually did that, only my own paranoid prejudice and incapability to trust people was at fault and it always bit me on the behind when I approached my historically worst points in time - crossing roads.
Crossing roads used to be a major point where I suffered the dizziness known as 'presyncopal lightheadedness' - in my limited and basic knowledge (ie I could be mistaken here), this symptom is sparked by blood circulating in an inefficient way to the brain causing vertigo, exascerbated eye astigmatizm, and temporary degradation of physical and cognitive function - it basically automatically induced feeling like the labels I then believed others to be calling me behind my back, and so I always approached a street tense and nervous, knowing what crossing would create and hating knowing how I would appear as it justified my doctors prognosis of 'adaptation' and not the improvment I vehemently believed was taking place on a genuine, not adaptive, level.
Time and time again I failed at the roads edge and returned home hearing the thick South African voice of my former doctor saying 'adaptation - you'll never improve' : the experience of failing crossing the road simply added truth to that paranoid fear I had.
I returned the crutch to the hospital not long after that. I continued to rehab at the gym and doing my balance/eye exercises at home while also continuing to persue my linguistic studies alongside, but always there would be failure - forgetting a word of Chinese, crossing the road near where I live badly, answering the telephone with a pronounced slurring in my voice, and I began to despise myself and my inability to function as I wanted.
This self loathing made me miss the improvments which were being made - new vocabulary remembered and understood, where doing so used to be an impossibility, the final crutch returned to the hospital as my balance was good enough to move around freely, things virtually remaining straight when I looked to either side, rather than violently shaking around - sure, it took a millisecond to focus properly, but at least it wasn't as bad as before - my voice also began to regain strength and certainty, yet still I remained fixated and jaded by the word 'adaptation' - it made me inwardly full of hatred and outwardly withdrawn as I couldn't believe that my health would stop that far after having progressed so far in recovery.
By the beginning of this year, 2009, I'd stopped suffering full presentations of lightheadedness and only got mild and slight recurances now and again. Today (late Oct, 2009) it's about 90% gone, where it was about 40% recovered when I was told it would never improve past that point again.
From seeing this recovery and feeling the obvious progress, I've acquired a new take on the word 'adaptation' - perhaps the way it was originally insinuated by my doctor 2 years ago, to be taken - not as being fobbed off with a false and euphemized term insinuating perpetually lacking health, but a word open to the interpretation that, with brain injury recovery, no one knows how far it will go and, in all likelihood, my doctor was going on the assumption that I'd perhaps choose not to try and improve further, to capitulate to the sadness of being so different from before and stop trying to improve. I no longer resent him, I'd probably have said the same thing if in his place, but being on the receiving end of a prognosis open to misinterpretation can be *real* hard to tolerate and not become bitter and twisted about.
The way that word, adaptation, made me feel, contributed to my now having no more real friends where I once had lots - I see this now and also see a conceited version of myself bent on doing something about a prognosis handed down to me which I completely misunderstood and took wrong, hence prooving also the mental disability I had back then as I allowed my emotions to cloud my better judgment.
I paid for my mistake by becoming obsessive, isolated, and negatively minded. I then wondered, upon seeing that I had to lighten up, how I could become more laid back, and I found the 'Need a laugh?' group upon this site, and duely joined up thinking that it was simply a boredom fixing passtime. I was wrong. I joined that group and began posting things - whether any of it is or has been funny is irrelevant, because I lightened up and became less tense by default as I found myself no longer thinking about the point where I tried to cross that road or worrying about the telephone ringing and how I'd sound answering it, but how I could post something new and amusing on the laugh group. I became fixated on that and, when I had nothing, I began to post elsewhere on this site while thinking of new ways to make my page look unique and interesting.
It all created a more positive mindset by this year and, lo and behold, my presyncopal lightheadedness is now virtually gone as my brain has continued to both adapt and improve in rehab, I've posted new topic after topic on this page, and improved my cognitive thinking abilities and memory in doing so. Concentration is better, this, that and the other - all better and not subject to adaptation, in my belief. I know this because I've kept my train of thought for the duration of this blog and not felt the need to go back and review at all - an impossibilty a year ago, from memory.
The ultimate point of this blog, while relating information about personal improvment, is to also acknowledge and thank both Stephen and Elizabeth for creating a site which has yielded more, to me, than just a place to come and spill my mind onto a computer - it's rehabbed something which pills and gym equipment cannot - my ability to be less tense.
Thankyou again, I will not forget that.
"Your eye astigmatizm is still all over the place" I can still hear him tell me in his thick, South African accent (the accent makes the memory clearer in my mind). This came before I asked if a full recovery would be made and he answered by widening his eyes in disbelief at my apparent stupidity and simply shook his head before beginning to smile, encouragingly, while informing me that further improvment would be condusive to, 'adaptation' - in other words, no further improvment would be had, my brain would simply get used to the damage and learn to live with it. He said this with eyes that implored me to receive his words like good news. The tone of his voice was almost condescending and stunk of the love I still believe the man has for himself.
After leaving the hospital evaluation, still then requiring the use of a crutch, the other thing he said resonated in my mind and replayed over and over,
"Get out there and just do it" he said while failing to suggest to me, not what 'it' might actually be - I realize it's up to each individual to find their own way in life, but to instead suggest to me some kind of disability service catering for employment opportunities for the disabled. He simply overlooked that and said "go do it" after telling me I was more or less irrepairably brain damaged on an indefinate level.
That seemed like a contradiction - being told to go live my life and just 'do it' despite also being informed that I have permanent and irrepairable cognitive and physical function : how can you just pick something while needing to take variables like that into account?
I went for my daily walk on returning home from the hospital and the degree of my former disability became then even more apparent than it usually was as I had his words replaying over and over in my head and I wondered still how to define 'it' - the thing he suggested I do.
The sensation of being outside at that point felt similar to how being drunk while in town and trying to hide that fact from the general public was prior to contracting the illness. I then knew what activities were high risk for exposing my intoxication and I became very nervous at then being found out as drunk while in town.
Encephalitis has been the same, I've found. I don't want people in public to see me as different or brain injured and, therefore, going into town has felt like being drunk while everyone else around has been sober - the drunken tosser who others point and laugh at while he (ie me) doesn't appear to notice the looks and mockery around.
The word 'adaptation' has been like the proverbial kryptonite for me (ie bad stuff - Supermans bad stuff, right?) in that I've walked everywhere trying to appear like anyone else but hearing the word 'adaptation' resonating in my mind like some sort of sadistic walkman which only I notice and everyone else is oblivious to seeing.
Feeling nervous and out of place as I subliminally reminded myself of how brain injured I used to feel I appeared as being, made me an inherantly irritable person to be near - not violent or verbally abusive, just tense and cold. Everyone was judging me negatively, I used to think - everyone was labelling me something awful like retarded or mental or like a freak, yet no one actually did that, only my own paranoid prejudice and incapability to trust people was at fault and it always bit me on the behind when I approached my historically worst points in time - crossing roads.
Crossing roads used to be a major point where I suffered the dizziness known as 'presyncopal lightheadedness' - in my limited and basic knowledge (ie I could be mistaken here), this symptom is sparked by blood circulating in an inefficient way to the brain causing vertigo, exascerbated eye astigmatizm, and temporary degradation of physical and cognitive function - it basically automatically induced feeling like the labels I then believed others to be calling me behind my back, and so I always approached a street tense and nervous, knowing what crossing would create and hating knowing how I would appear as it justified my doctors prognosis of 'adaptation' and not the improvment I vehemently believed was taking place on a genuine, not adaptive, level.
Time and time again I failed at the roads edge and returned home hearing the thick South African voice of my former doctor saying 'adaptation - you'll never improve' : the experience of failing crossing the road simply added truth to that paranoid fear I had.
I returned the crutch to the hospital not long after that. I continued to rehab at the gym and doing my balance/eye exercises at home while also continuing to persue my linguistic studies alongside, but always there would be failure - forgetting a word of Chinese, crossing the road near where I live badly, answering the telephone with a pronounced slurring in my voice, and I began to despise myself and my inability to function as I wanted.
This self loathing made me miss the improvments which were being made - new vocabulary remembered and understood, where doing so used to be an impossibility, the final crutch returned to the hospital as my balance was good enough to move around freely, things virtually remaining straight when I looked to either side, rather than violently shaking around - sure, it took a millisecond to focus properly, but at least it wasn't as bad as before - my voice also began to regain strength and certainty, yet still I remained fixated and jaded by the word 'adaptation' - it made me inwardly full of hatred and outwardly withdrawn as I couldn't believe that my health would stop that far after having progressed so far in recovery.
By the beginning of this year, 2009, I'd stopped suffering full presentations of lightheadedness and only got mild and slight recurances now and again. Today (late Oct, 2009) it's about 90% gone, where it was about 40% recovered when I was told it would never improve past that point again.
From seeing this recovery and feeling the obvious progress, I've acquired a new take on the word 'adaptation' - perhaps the way it was originally insinuated by my doctor 2 years ago, to be taken - not as being fobbed off with a false and euphemized term insinuating perpetually lacking health, but a word open to the interpretation that, with brain injury recovery, no one knows how far it will go and, in all likelihood, my doctor was going on the assumption that I'd perhaps choose not to try and improve further, to capitulate to the sadness of being so different from before and stop trying to improve. I no longer resent him, I'd probably have said the same thing if in his place, but being on the receiving end of a prognosis open to misinterpretation can be *real* hard to tolerate and not become bitter and twisted about.
The way that word, adaptation, made me feel, contributed to my now having no more real friends where I once had lots - I see this now and also see a conceited version of myself bent on doing something about a prognosis handed down to me which I completely misunderstood and took wrong, hence prooving also the mental disability I had back then as I allowed my emotions to cloud my better judgment.
I paid for my mistake by becoming obsessive, isolated, and negatively minded. I then wondered, upon seeing that I had to lighten up, how I could become more laid back, and I found the 'Need a laugh?' group upon this site, and duely joined up thinking that it was simply a boredom fixing passtime. I was wrong. I joined that group and began posting things - whether any of it is or has been funny is irrelevant, because I lightened up and became less tense by default as I found myself no longer thinking about the point where I tried to cross that road or worrying about the telephone ringing and how I'd sound answering it, but how I could post something new and amusing on the laugh group. I became fixated on that and, when I had nothing, I began to post elsewhere on this site while thinking of new ways to make my page look unique and interesting.
It all created a more positive mindset by this year and, lo and behold, my presyncopal lightheadedness is now virtually gone as my brain has continued to both adapt and improve in rehab, I've posted new topic after topic on this page, and improved my cognitive thinking abilities and memory in doing so. Concentration is better, this, that and the other - all better and not subject to adaptation, in my belief. I know this because I've kept my train of thought for the duration of this blog and not felt the need to go back and review at all - an impossibilty a year ago, from memory.
The ultimate point of this blog, while relating information about personal improvment, is to also acknowledge and thank both Stephen and Elizabeth for creating a site which has yielded more, to me, than just a place to come and spill my mind onto a computer - it's rehabbed something which pills and gym equipment cannot - my ability to be less tense.
Thankyou again, I will not forget that.
Add a Comment
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Comment by Daniel on October 22, 2009 at 2:56am -
To any who have read this far - kudos, but I also found this article on Youtube recently about the strain of this virus I'm recovery from - Bickerstaffs brainstem and limbic encephalitis. It describes a man in the US who contracted the disease and, at the time of infection, was only of a small group of just under 70 people known to suffer from it. Upon hearing this fact, and in my eternal arrogance, I thought,
'That few? Wow, I'm of a select type' - that's before I slapped my silly head and realized that not having many others known to suffer the same strain (presumably there are more now - yours truly being at least one example), less time will have been devoted to its study and knowledge of how to rectify it as, compared to something like cancer, there's less point in pursuing it when the greater evil kills or damages so many (that's my take, incidentally, I assume I'm right).
I saw this man running his dohnut stand somewhere in the States with symptoms *so* much worse than my own and I realized just how fortunate I am to still be improving significantly and to have suffered such a watered down version of the condition.
To me, someone like this guy in the video, is someone who I personally greatly admire. When I feel down about life or wishing I had a job, or reluctant to go to rehab - he's got the job : I had one (post infection) but they nicely insinuated it was time for me to bugger off - this guy powers on and I admire that.
The one part of this video which I found a little distressing was the end when the lady says that doctors "don't know" this, that and the other : there's hope mentioned of a recovery, like with me, but no definition and I continue to wonder just how realistic such hopes are, only momentarily before I resume maintaining the high hopes I have - sometimes, I think, not knowing is a great ingredient to remaining optimistic.
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Comment by Daniel on October 21, 2009 at 5:35pm
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Today I decided to take my daily walk before 10am. Doing so has historically increased my chances of presyncopal lightheadedness happening significantly - hence I do it because I'm job hunting and convincing an employer that I'm capable of whatever he or she needs at any time of the day, not just those condusive to my health.
Before I go on, I should add that the reason suspected for the time related presentation of this symptom, I think, is due to having not woken up fully and blood not yet circulating efficiently to my brain and being more condusive to dizziness at that time. Hence also I tend to go to the gym often before 9am in order to desensitize to this fact (it works, incidentally).
Today I encountered a number of points which have previously contributed to dizziness :
1 - It was about to rain and I felt the need to rush
2 - It was before 10am and I was yet to fully wake up
3 - I encountered an over zealous dog being walked by a beautiful young lady. The dog, a harmless black labarador, saw me and struggled on its lead to come close and say hi - an alarming moment which would inevitably have caused havoc in the past as I worried about looking bad in front of this pretty lady
4 - Finally, some teenage dickheads drove past me and yelled, "F*** you!" as they did so - which would also have previously triggered an attack in the past.
The time of day gone has been something which I've been getting used to, adapting to, for a while now (about 2 years) and no longer feels like as much of an issue as it previously has done. The dog with it's pretty owner and the immature dickheads in the car, on the other hand, are moments I'm still yet to master,
'Get ready for dizziness' - I thought at each occasion, but nothing happened. I smiled at the lady and laughed at her comment of the dog being like a set of weights, but the little boys in the car, on the other hand, were a different proposition - I felt belittled and like I'd been singled out as noticeably vulnernable to their verbal attack,
'Do I look like an easy target? Why did they pick me to abuse?' I wondered as I kept walking. It wasn't until a way down the road that I realized they had called me the same thing they would have called *anyone*, and they did so only because I was simply there : they didn't add any words like, 'retard' or 'mentalcase' (pardon terminology) - as I immediately feared they would, so by abusing me the same as they would anyone, they were actually paying a complement,
'They can't see my brain injury,' I thought, 'they don't know what I'm hiding from sight' I realized while smiling to myself with satisfaction - their abuse worked in my favour and I'm adapting to a higher tolerance of adverse reaction to historically bad situations - that's improvment, I think, not adaptation exclusively - hahhahahhahahhahahhaaaaaaaaaa.......ahem.
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Comment by Daniel on October 21, 2009 at 12:14am
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I'd also just like to add the following : A while back, I went through a personal issue and became a little disillusioned with my presence upon this site - no fault of Survivors Plus, I should say, purely my own selfishness of the time. Subsequently, I persused a few alternative encephalitis/brain injury sites and discovered that the others centre themselves exclusively upon a 'post here and wait for a reply' - sort of basis where you plonk your story down on the page in essay format and hope like heck someone notices you exist. I don't like this approach - I'm yet to meet another survivor who hasn't experienced exclusion and social discomfort, so these others sites - I think - actually potentially perpetuate such isolation by giving the individual posting no reason to return there unless someone actually responds to either the post or an attempt to say hi to someone else.
I come from a small nation. I've experienced, time and time again, prejudice for that fact, "you're not from the US, you're not from Britain, you're too far away" some have chosen to say, to which I immediately wonder why on earth that actually matters at all : I imagine only a small number of people on support sites actually meet face to face, so really the only common denominator, other than encephalitis, between two people who speak online, irrespective of wherever they come from, is the ability to speak English. This is all that matters and it's something which I've found evident from the outset of meeting someone : people are either fantastic and open to you while not caring how far away from them you are, or immediately standoffish and dismissive.
To any who read this and perhaps don't post on this site as much as they like, I've found this : Survivors Plus is an online community with, I've found, a level of expressive freedom and the ability to come back regardless of whether or not you feel accepted where other sites are the proverbial online desert of inactivity to those deemed too far away to want to communicate with - those sites perpetuate the isolation of encephalitis, this one actually helps reverse it - the music player list, need a laugh, personalization of individual pages.....all these things put the other sites I've seen to complete and utter shame.
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