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Becoming numb to getting on with things
I recall not so long ago feeling driven and motivated to naively doing every conceivable thing I could possibly do in order to get well and move on, "When are you gonna move on with your life?" people asked as I stammered back in reply things like,
"W-when I g-get w-well", or, "W-when I s-s-stop bec-oming diz-zy all the t-time" - such replies were met with doubt-filled looks implying that such things were never going to happen and that I needed to come to terms with the situation and move past that.
This was firstly evident when I saw my old doctor at the Chrischurch hospital I lastly stayed at, Burwood hospital, and this man - an overopinionated and inherantly skeptically minded man who I grew to resent, shook his head and said, "Nope, you'll only ever adapt from here, you'll never improve again to the point of walking completely independently or sound unhindered" - it felt like a slap in the face when, initially, doctors in China (where I fell ill) threw words around to my family like, "stroke", "may not live" and so forth. That was the perceived limitation of my health in 2005 - death, or severe and permanent brain injury. The doctor at Burwood jumped on the 'permanent brain injury' bandwagon but apparently disregarded the potential for imminent death which had seemed so apparent beforehand by those doctors abroad.
For a long time thereafter, dizziness in the form of presyncopal lightheadedness became my constant reminder of not yet being well at that point and gave credibility to those initially skeptical prognosis of permanence in my health.
One thing I'll never forget about Burwood hospital and that initial neurologist was his apparent keenness to learn from me and to say all he felt he knew about the permanence and irrpairability of this disease, before proceeding to learn all he could from me in order to improve his own knowledge of encephalitis.
I suspected he knew little about it and was just saying the negative things he did about my future in order to cover his own ass and not be held accountable in the future if things turned out in the most likely manner : ie badly and with little change or improvment. I said nothing bad to him, and only hated him internally as I stormed out of his office feeling like a means of his furthered medical knowledge moreso than someone he'd tried to help.
I joined the YMCA gym in town and began to listen to physiotherapists simply because of desperation and that was extremely hard and painful at the start. I'm a recovering lazy bugger and exercise ontop of encephalitis was a hard pill to swallow at the best of times.
The rehab made me *tired* all the time, and irritable as my dizziness and lightheadedness worsened due to fatigue, but I sometimes felt more physically capable directly afterwards.
I then began to go see another neurologist outside the hospital who proceeded to inject me with medications, eventually charging a significant amount of money to trial a new drug designed to fight vestibular dizziness, at the expense of making me feel more prone to fatigue. It did worsen the fatigue, and the dizziness also with it. Again, I paid for something so that a doctor could learn and improve his knowledge.
I continued at the gym for a long time thereafter, lessening the frequency gone there from 7 down to 3 days/week until I went to see a vocational assistance agency. At that point in time I'd just defied the Chinese doctors and the one at Burwood by returning the crutches and walking out of there, not triumphant, more feeling mildly intoxicated still in appearance, but neurologically a mess with memory, co ordination, cognitive thinking ability and so forth all still terrible.
The vocational agency looked me over, discussed what I could and, more readily, could not do and time passed after I left as it became then clear that they were unable to think of ways to help me out in finding a job. I realized that soon after and it gave even more credibility to the adaptation theory the doctor had labelled my future with, while I ignored the fact that I no longer was in a wheelchair or using crutches, could independently take a bus to town and improve my studies - all things which were initially said would never happen.
It was cold comfort as I still felt terrible and incapable of achieving much in terms of work.
I then threw myself at a voluntary work organization who hooked me up with work at an inner city library doing clerical duties. I went there and the first few months felt very challenging as I didn't understand anything. The boss there is a saint and allowed me to fumble around there until I did get it, probably after about 4 months of achieving very little (this was early '09, incidentally). By 7 months, she (boss) approached me and asked if I'd like to do a training course to become an English tutor there at a few hours a week for pathetic renumeration. It initially felt like a victorious proposition : she had no idea that I'd previously been labelled 'imminently at deaths door' by doctors in central China, 'a stroke sufferer' by those in Hong Kong, 'probably suffering the early onset of MS' by those in central Christchurch, to 'irrepairably effected by encephalitis' at Burwood. She didn't see the wheelchair, crutches, the presyncopal lightheadedness, the formerly chronic eye astigmatizm or the gravely deficient memory and slurry speech, she saw someone near health a perhaps capable of repaying her business in the future by undertaking a ludicrously underpaid job which would have cost alot of time to become qualified to do.
She missed all that, like the previous doctor only had a vague concept of what came earlier before seeing him, and like the doctor before him and him again until the first doctor who saw me in LanZhou, China : perhaps the only specialist with any justification to be utterly negative, yet surpassed in his negativity of my outcome by a string of subsquent specialists who all didn't want to jeopardize their reputations by telling me what was possible : improvment is a possibility as long as you remain motivated.
I recently saw another specialist who charged me $150 (about USD$80) to hear him say, after a brief examination, "Further improvment will not likely happen" after he 'learned' a great deal of new info from my exam for his own reference. I stopped myself upon contemplating pouring water down his trousers and saw that he had absolutely no idea of how things were during the past four years of this experience - he didn't see my delusional confabulatory outbursts I had in China when I saw family members at my bedside who simply weren't there. He never saw my eyes flicking up and down involuntarily as I looked straight ahead, the nerve pain which was intense for the first year or so, and other associated paraphenialia - wheelchairs, crutches, medicine, the German male nurse who escorted me home from China and who had to help me shave because I couldn't safely do it one morning without cutting myself.
He missed all that and pointed to that one, singular, moment where I sat in front of him with an eye astigmatizm so subtle, he had to really hunt for it by making me track a pen held in front of my face before it became apparent. The imbalance of 2005 undetectable. The slurry speech of previous years only evident when I said a sentence which was too long. The imbalance only evident when I turned too quickly to leave feeling like he had taken my hopes of his positive commentary and set fire to them while laughing vindictively. He had no idea I had been meticulously monitoring my dizziness and now know that, today, there is a less than 5% chance of it occurring, and to a pathetic but noticeable degree, where it was 300% only 2 years ago and to a head splitting-in-pain degree of severity.
Each specialist only ever assesses what they have in front of them at the time and what they can read on notes they hold, yet at the end they're all keen to hold their hands out and expect exhorbetenty large sums of money in exchange for trampling your hopes of improvment and offering little advice on how to fix the problems - no one knows how to reverse presyncopal lightheadedness, so they learn from me and I pay them to do so. No one knows which drugs will reverse the eye astigmatizm, so I pay them in order for them to have no idea about where it once was and offer little to no reason to optimistic about the future of that health aspect.
No one knows this, or that, yet each holds their hand out at the end and I'm made to pay for hoping for a slight semblance of positivity where I only ever get nothing and an implication that it wont improve from that point onwards.
It wont improve further, but it is constantly and is consistently, and is only because I continue to take the words of those darned people and extend my middle finger to them as I improve past every prognosis they offer.
I recently thought upon this point and realized that not one of those specialists really wanted to tell me anything bad, they just had no way of honestly saying anything good, so tried to instead salvage what they could from me in the form of knowledge so that the next person they see with a similar problem may be better assisted.
I see each meeting with a less definitive and certain prognosis of, 'not going to get better from here', to, 'it's unlikely to improve further', to, 'probably wont improve but we'll try this', to the more recent, 'maybe things will feel improved if this, that or the other is tried' - sort of notion, and I see that neurologists don't know a darned thing about encephalitis, yet I continue to hit the gym and see genuine and tangeable physical improvment there while also communicating to a better and clearer degree with those I meet inside.
In my experience, neurologists are *NOT* the specialists for recovery from encephalitis, physiotherapists *ARE* - because they deal in self confidence. They deal in repairing the body with routine and neurological retraining until things just work better. There is no pill for the encephalitis virus which I know of, but the best medication is someone who's willing to help get you started with physical therapy, someone who can show you how to feel better and more confident about yourself like a physiotherapist will, not a neurologist who will see you as nothing more than a fascinating opportunity to further his own knowledge.
My neurologist was a wanker and a poser who dismissed me when he didn't know how to fix my problem in one or two meetings with him or with medications. I will *never* forgive him for that, or the way he said I'd *never* improve and only adapt. I've not adapted, I have improved, and I now feel again over 90% health where it was prognosed I'd stop when I felt much less than that.
In the end, all I mean to say, is that with encephalitis doctors are flying blind and know little to nothing helpful, but they're always keen to learn from you. I'm angry about their approach and I'm not a guinea pig at their disposal - I'm a human who intends to kick this diseases' butt : I say this still after 4 years and still I have tangeable evidence that such a favourable outcome is occurring as doctors lack of dismissive certainty grows more and more evident, saying that I must be doing something right.
It begins with self confidence, I reckon.
"W-when I g-get w-well", or, "W-when I s-s-stop bec-oming diz-zy all the t-time" - such replies were met with doubt-filled looks implying that such things were never going to happen and that I needed to come to terms with the situation and move past that.
This was firstly evident when I saw my old doctor at the Chrischurch hospital I lastly stayed at, Burwood hospital, and this man - an overopinionated and inherantly skeptically minded man who I grew to resent, shook his head and said, "Nope, you'll only ever adapt from here, you'll never improve again to the point of walking completely independently or sound unhindered" - it felt like a slap in the face when, initially, doctors in China (where I fell ill) threw words around to my family like, "stroke", "may not live" and so forth. That was the perceived limitation of my health in 2005 - death, or severe and permanent brain injury. The doctor at Burwood jumped on the 'permanent brain injury' bandwagon but apparently disregarded the potential for imminent death which had seemed so apparent beforehand by those doctors abroad.
For a long time thereafter, dizziness in the form of presyncopal lightheadedness became my constant reminder of not yet being well at that point and gave credibility to those initially skeptical prognosis of permanence in my health.
One thing I'll never forget about Burwood hospital and that initial neurologist was his apparent keenness to learn from me and to say all he felt he knew about the permanence and irrpairability of this disease, before proceeding to learn all he could from me in order to improve his own knowledge of encephalitis.
I suspected he knew little about it and was just saying the negative things he did about my future in order to cover his own ass and not be held accountable in the future if things turned out in the most likely manner : ie badly and with little change or improvment. I said nothing bad to him, and only hated him internally as I stormed out of his office feeling like a means of his furthered medical knowledge moreso than someone he'd tried to help.
I joined the YMCA gym in town and began to listen to physiotherapists simply because of desperation and that was extremely hard and painful at the start. I'm a recovering lazy bugger and exercise ontop of encephalitis was a hard pill to swallow at the best of times.
The rehab made me *tired* all the time, and irritable as my dizziness and lightheadedness worsened due to fatigue, but I sometimes felt more physically capable directly afterwards.
I then began to go see another neurologist outside the hospital who proceeded to inject me with medications, eventually charging a significant amount of money to trial a new drug designed to fight vestibular dizziness, at the expense of making me feel more prone to fatigue. It did worsen the fatigue, and the dizziness also with it. Again, I paid for something so that a doctor could learn and improve his knowledge.
I continued at the gym for a long time thereafter, lessening the frequency gone there from 7 down to 3 days/week until I went to see a vocational assistance agency. At that point in time I'd just defied the Chinese doctors and the one at Burwood by returning the crutches and walking out of there, not triumphant, more feeling mildly intoxicated still in appearance, but neurologically a mess with memory, co ordination, cognitive thinking ability and so forth all still terrible.
The vocational agency looked me over, discussed what I could and, more readily, could not do and time passed after I left as it became then clear that they were unable to think of ways to help me out in finding a job. I realized that soon after and it gave even more credibility to the adaptation theory the doctor had labelled my future with, while I ignored the fact that I no longer was in a wheelchair or using crutches, could independently take a bus to town and improve my studies - all things which were initially said would never happen.
It was cold comfort as I still felt terrible and incapable of achieving much in terms of work.
I then threw myself at a voluntary work organization who hooked me up with work at an inner city library doing clerical duties. I went there and the first few months felt very challenging as I didn't understand anything. The boss there is a saint and allowed me to fumble around there until I did get it, probably after about 4 months of achieving very little (this was early '09, incidentally). By 7 months, she (boss) approached me and asked if I'd like to do a training course to become an English tutor there at a few hours a week for pathetic renumeration. It initially felt like a victorious proposition : she had no idea that I'd previously been labelled 'imminently at deaths door' by doctors in central China, 'a stroke sufferer' by those in Hong Kong, 'probably suffering the early onset of MS' by those in central Christchurch, to 'irrepairably effected by encephalitis' at Burwood. She didn't see the wheelchair, crutches, the presyncopal lightheadedness, the formerly chronic eye astigmatizm or the gravely deficient memory and slurry speech, she saw someone near health a perhaps capable of repaying her business in the future by undertaking a ludicrously underpaid job which would have cost alot of time to become qualified to do.
She missed all that, like the previous doctor only had a vague concept of what came earlier before seeing him, and like the doctor before him and him again until the first doctor who saw me in LanZhou, China : perhaps the only specialist with any justification to be utterly negative, yet surpassed in his negativity of my outcome by a string of subsquent specialists who all didn't want to jeopardize their reputations by telling me what was possible : improvment is a possibility as long as you remain motivated.
I recently saw another specialist who charged me $150 (about USD$80) to hear him say, after a brief examination, "Further improvment will not likely happen" after he 'learned' a great deal of new info from my exam for his own reference. I stopped myself upon contemplating pouring water down his trousers and saw that he had absolutely no idea of how things were during the past four years of this experience - he didn't see my delusional confabulatory outbursts I had in China when I saw family members at my bedside who simply weren't there. He never saw my eyes flicking up and down involuntarily as I looked straight ahead, the nerve pain which was intense for the first year or so, and other associated paraphenialia - wheelchairs, crutches, medicine, the German male nurse who escorted me home from China and who had to help me shave because I couldn't safely do it one morning without cutting myself.
He missed all that and pointed to that one, singular, moment where I sat in front of him with an eye astigmatizm so subtle, he had to really hunt for it by making me track a pen held in front of my face before it became apparent. The imbalance of 2005 undetectable. The slurry speech of previous years only evident when I said a sentence which was too long. The imbalance only evident when I turned too quickly to leave feeling like he had taken my hopes of his positive commentary and set fire to them while laughing vindictively. He had no idea I had been meticulously monitoring my dizziness and now know that, today, there is a less than 5% chance of it occurring, and to a pathetic but noticeable degree, where it was 300% only 2 years ago and to a head splitting-in-pain degree of severity.
Each specialist only ever assesses what they have in front of them at the time and what they can read on notes they hold, yet at the end they're all keen to hold their hands out and expect exhorbetenty large sums of money in exchange for trampling your hopes of improvment and offering little advice on how to fix the problems - no one knows how to reverse presyncopal lightheadedness, so they learn from me and I pay them to do so. No one knows which drugs will reverse the eye astigmatizm, so I pay them in order for them to have no idea about where it once was and offer little to no reason to optimistic about the future of that health aspect.
No one knows this, or that, yet each holds their hand out at the end and I'm made to pay for hoping for a slight semblance of positivity where I only ever get nothing and an implication that it wont improve from that point onwards.
It wont improve further, but it is constantly and is consistently, and is only because I continue to take the words of those darned people and extend my middle finger to them as I improve past every prognosis they offer.
I recently thought upon this point and realized that not one of those specialists really wanted to tell me anything bad, they just had no way of honestly saying anything good, so tried to instead salvage what they could from me in the form of knowledge so that the next person they see with a similar problem may be better assisted.
I see each meeting with a less definitive and certain prognosis of, 'not going to get better from here', to, 'it's unlikely to improve further', to, 'probably wont improve but we'll try this', to the more recent, 'maybe things will feel improved if this, that or the other is tried' - sort of notion, and I see that neurologists don't know a darned thing about encephalitis, yet I continue to hit the gym and see genuine and tangeable physical improvment there while also communicating to a better and clearer degree with those I meet inside.
In my experience, neurologists are *NOT* the specialists for recovery from encephalitis, physiotherapists *ARE* - because they deal in self confidence. They deal in repairing the body with routine and neurological retraining until things just work better. There is no pill for the encephalitis virus which I know of, but the best medication is someone who's willing to help get you started with physical therapy, someone who can show you how to feel better and more confident about yourself like a physiotherapist will, not a neurologist who will see you as nothing more than a fascinating opportunity to further his own knowledge.
My neurologist was a wanker and a poser who dismissed me when he didn't know how to fix my problem in one or two meetings with him or with medications. I will *never* forgive him for that, or the way he said I'd *never* improve and only adapt. I've not adapted, I have improved, and I now feel again over 90% health where it was prognosed I'd stop when I felt much less than that.
In the end, all I mean to say, is that with encephalitis doctors are flying blind and know little to nothing helpful, but they're always keen to learn from you. I'm angry about their approach and I'm not a guinea pig at their disposal - I'm a human who intends to kick this diseases' butt : I say this still after 4 years and still I have tangeable evidence that such a favourable outcome is occurring as doctors lack of dismissive certainty grows more and more evident, saying that I must be doing something right.
It begins with self confidence, I reckon.
Add a Comment
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Comment by faith on September 30, 2009 at 5:19pm - at the moment for me its all about ignoring other people's talk
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Comment by Daniel on September 30, 2009 at 12:49am -
In my experience, self confidence begins with not talking yourself into believing something will go badly for you (welcome back, by the way, it's nice to read your responses again). Presyncopal lightheadedness (dizziness), a large amount of speech deficit, logical thinking, are all exascerbated by being nervous as it creates (in my opinion) a raised heartrate and blood circulation to a recovering brain which cannot tolerate that without relearning a higher tolerance of something similar.
I've overcome the nightmare road near me, but I think a large part of doing that was by finding less concerning roads and realizing that my mistakes were actually, largely, self induced and all I needed to do was be more calm and controlled.
I think the solution is self reassurance and ignoring talking yourself into having a problem, like a fear of crossing the road or something.
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Comment by faith on September 29, 2009 at 6:01pm
- i reckon you are right... any idea where i can get some???? (self confidence that is)
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