I wonder if anyone else here on Survivors Plus has acquaintances or people they knew prior to illness and in the early stages of infection, who saw your initial symptoms : the slurry speech, the involuntarily rolling eyes, inability to stand, to remember more than a minutes worth of events and so forth, and were horrified by it? There is one other symptom I've omitted to mention which has contributed to the reasons behind this blog - immaturity and seemingly being simplified or slightly retarded… Continue
I remember being *very* unwell - people expected things like getting out of bed or just eating a meal without spilling the food from my fork or spoon on my lap. Achieving those things was difficult to do. My memory was so bad that each time felt like the first time trying that at all after falling unwell - My mind knew what a fork or spoon was, but my body seemed not to have any idea,
"Pour the soup into your mouth" I'd think as my shaky hand inevitably spilled it on the tray I then used,
"Cross… Continue
Added by Daniel on November 20, 2009 at 7:54pm —
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I've often harped on about how people I once knew have been less than supportive throughout the course of this recovery, but I've also begun trying to see things from their point of view : someone they knew (myself) who was a good friend and drinking companion stuck in that past life and with a neurological disorder which left him constantly appearing like we all used to at 2am, when the booze ran out and we were about to crash for the evening anywhere we could on the floor.
I remember those ti… Continue
Added by Daniel on November 11, 2009 at 4:12am —
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I actually recall waking in hospital in the midst of a cold New Zealand winter (icy, no snow) in 2005.....and again the next day when I thought it was the first, and the day after that until, maybe a month afterwards, I began to expect to awaken in hospital. I recall this having happened now but, at the time, it felt like waking after a hard night drinking and trying to recall the events of the previous evening as everyone informs you of how silly you were. Everyone still said things of the even… Continue
Added by Daniel on October 29, 2009 at 5:44am —
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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… Continue
Like anyone in recovery from encephalitis - I've had an abismal memory. Veering away from a sob story about it, while also tempted to write this as a discussion, I'll post this as a blog because it's something which came back to me while chatting with someone on the site recently, and I feel it's just wierd that this should stand out in my mind while so many other things seem to have just vanished - things which I know are important and would greatly help my sanity if recalled accurately, but wh… Continue
'I'll be well by the end of 2005' I told myself in that year, the year I fell sick. I thought this because it had happened that way in the preceding year of 2004, when I'd been fortunate enough to get over Gillain Barre (neurological viral illness) in about 4 months and return to China, where it all began, in 2005 and begin my second health-related journey with Bickerstaffs brainstem and limbic encephalitis.
Something always remained in the back of my mind during the 4 hospital stays over a 6 m… Continue
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 t… Continue
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 ge… Continue
I can recall in 2005 when I first arrived back home and was sitting up in my hospital bed opposite Arthur : an elderly gentleman who had suffered a stroke. He had glasses on and short, grey hair, but what I noticed the most was how straight minded he sounded when speaking - not the physical pronounciation - that was only marginally better than my own, but how he thought and how nice and polite he came across when saying anything surprised the heck out of me and I could hardly believe it when the… Continue
Added by Daniel on September 23, 2009 at 5:20am —
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I began to work voluntarily at the Adult Reading Assistance Scheme (ARAS) in January of this year, doing general office duties and basic library tasks (it's a library, obviously) while tutors, students of language (one on one tuition offered there), and the general public came and went.
I didn't understand a darn thing for the first month or so of turning up there. I was scared stiff of being put into a position of meeting work standards and, though only expected to be there a few hours a week,… Continue
I love this song which I've just discovered, 'Breathe', by Anna Nalick - mostly because, not only is it just a really nice song, but one line of the lyrics :
'Life's like an hourglass glued to the table'
When I hear this line, it obviously implies that the hourglass can't be reset and, therefore, (in my interpretation) it's incredibly finite in it's duration and fixed in such a way that when it's gone, it's gone.
It's an over dramatic observation on my part to point this out… Continue
Added by Daniel on September 16, 2009 at 4:00am —
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I looked into studying something new just recently or, at the very least, gaining some assistance from the local social services about career advice (which they're actually obligated to provide as I'm registered with them and have been allocated someone to address my concerns), contacting also my vocational specialist at the hospital outpatient clinic of the hospital I still have ties with (in an outpatient capacity) - squarely to gain some ideas from them about means for career advancement, tra… Continue
Added by Daniel on September 8, 2009 at 11:00pm —
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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 wh… Continue
I refer to the vertigo symptom, presyncopal lightheadedness, as PSL because it's a pain in the butt to type and I'm lazy. I've suffered this form of vertigo for the more than 4 years now that I've been in recovery : it's simply been my proverbial archilles heel and wherever I go and whatever I do, it's stuck to me like a particularly large piece of nasal excretion which I don't notice until I cross a road or walk up a slope, then *bang*! dizzy.
I've been plotting my PSL recovery since day 1, whe… Continue
Added by Daniel on September 1, 2009 at 5:00am —
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I began giving a damn about getting well on October 25, 2005 : I know this because that was the day my exercise record begun (I monitor progress and fluctuations due to season - machinery stiffens in winter time so results appear worse - expecting it by recording results makes continuity easier to achieve, I find). I began to exercise telling myself that doing so would one day make me well again and I'd boldly, like the hero in some movie, strut back into my old life with friends all holding a g… Continue
I just discovered that I like Jack Johnsons music. This has been a song which has been playing on television throughout my recovery and which I'm only just now realizing is, to me, a brilliant metaphor for encephalitis : it's actually pretty close to the way things seem to be in my eyes - man begins with the aftermath of a messy situation which seems unclear about how he got there - why is Jack wet? Why is the room a mess? I got this, too - I wasn't wet, but there was a sizeab… Continue
Do you ever get those days where no matter how hard you try to look on the bright side of things, no matter how much you reassure yourself everything is fine, yet at that one central moment where your resolve is tested in some way, you come up short in some regard and confirm all the apprehensions and self doubt you thought beforehand and condemn yourself to feel the same way each and everytime that event transpires again?
My archilles heel throughout my recovery (to date) ha… Continue
This year (2009) has seen many, many changes and improvments in my health : the ability to work on a voluntary basis, regulating my rehab routine from everyday down to 3 days/week at greater intensity, to allow time for vocational progress, seemingly reobtaining my license to travel freely within the city (albeit feeling like I'm on a restricted permitt rather than a full license - it tends to be revoked when it gets dark), and numerous other things that until recently I didn'… Continue
I'm as annoyed as anyone about this expletive of a virus, but there are certain aspects to it which have actually proven to be the difference between not realizing something I wish I had earlier and now seeing something which used to be just absent from my life : in the words of one all time movie, 'There's no place like home' - when I went to China and fell ill there the first time with Gillian Barre, that was piss poor luck and I should have learned my lesson, come home to N… Continue
