Great moments in recovery for you

[Daniel]

I was sitting here this evening, thinking about what I usually do.....not much, when I felt an urge to be both in a good mood about life, and a bad one at the same time. As such, it felt like a moment to choose between coming onto the site this evening and choosing to post something positive, or something negative. Up until the last hour or so, I had elected to begin a discussion on distressing moments in recovery. I thought on this, then asked why on earth I'd wanna talk about that and then it seemed clear : because I was looking at today all wrong and was in a negative mood.

So, in defiance of my own state of mind, I'm going to ask the complete and utter opposite of what my brain is thinking about : what are the happiest/most significant moments in your recovery to date? Even if it's not something about your health - maybe it's the acquisition of a job, meeting someone special, going somewhere on your own which you thought you never again would be able to - what immediately springs to mind for you as a truly good moment in either life (post illness) or recovery which you are comfortable sharing?

[faith]

of course the other side to this approach, is that while i have a structure, and that has helped heaps... what has also helped me emotionally and cognitively is the fact that i also need to be flexible. this has been a big challenge post-e, as any change in plans or routine, has post-e i have found, been difficult to wrap my head around.
the need to be able to adjust to changes and unplanned contingencies has been a major influence in reshaping my emotional landscape as it were, post-e.
having to practice flexibility is something i am deeply grateful for... and still find challenging. i have found in my recovery that i feel panicky and anxious when sudden events or changes occur.

another example of how working/or not working in this environment pushes my cognitive rehab is happening right now as i type this, i am attempting to think, type, keep tabs on what each of the kids is doing, answer various questions etc all at once... it is not going well at the moment, so i will finish up now and talk later... but the point is, each day offers a whole range of challenging situations in which i am required to multi-task, and perform on cognitive, physical and emotional levels that continually push me to improve beyond where i thought i could.
have to go as they all want soemthing now!!!!
cheers,
faith

[Daniel]

You ever had days where you've felt really energetic, then just hit the wall unexpectedly?

How do you find swimming in terms of your ability to judge your body movements? Do you find the activity uncomfortable or disorientating?

That's quite a contradiction that you read only non fiction stuff and appear to be quite opposed to fictional writing, yet you write fiction as a personal hobby of your own - why the turnaround?

I think you're bang on the money - your hectic lifestyle is likely an invaluable rehab tool also.

Of the things you mention, which would you find to be the single most challenging task right now for you?

Incidentally, the improving beyond where you thought you could is, in my experience with the same, unjustifiably low expectations installed by doctors who don't want the finger of blame pointed at them, so they downplay your expected recovery and influence your own mindset, usurping your ability to recover so that they can rest easy at night. That you see obviously contradictory improvment and maintain an admirably diligent lifestyle, to me, says you've got every right in the world to expect much, much more improvment yet.

[faith]

Hitting the wall happens all the time. sometimes when i am swimming i do one lap, and then halfway thru the next i can feel it, by the time i reach the end (tis only 25m pool), i am dizzy and shaky and ready to vomit. I used to joke to my husband that i will be an olympian soon if i keep training to the point of vomiting. some days i can do my usual 800m, (now up to a tentative 1100...hope to make that my new routine figure), other days i am lucky to do 200 before the sudden onset.
other days, i am just poking about the house etc, and then boom, it comes, and i just need to stop and sleep like the dead for a while. usually around a half hour is enough, but there is the odd weekend that i just sleep all day and all night and half of the next too.
can be really hard to predict.
i have never really been into fiction, and still enjoy writing non-fiction the most, but at the moment i am really liking the process and freedom of non-fiction writing. there are a lot less rules! kinda tired of rules now i think, when there are so many to live by with E!
i wouldnt say my life is hectic as such (it used to be!), jsut full of the needs of other people.
right now, my most challenging task still remains getting more emotional stability... i lost a lot of my steadiness when i got bit by that blasted mozzie, and i really miss that. i just cant predict how i will go emotionally in any given circumstance or on any given day.
wht about you??

[Elizabeth]

Very cool answers. I still worry when Stephen goes somewhere by himself, but I know he can now and I think that the independence is a big issue. Thanks for asking the question, Daniel

[Daniel]

Personally, I got a handle on hectic a while back - not because of any super duper me-esque notion, more that being strung out by rehab and fearing the unknown qualities of the future was superceded by the now. I always try to project myself in a personable way online and in real life but, like anyone here I suspect, I've been burned alot by others and badly. I discovered last year that my routine and desire to improve, while admittedly self centred, took the emphasis away from feeling down about people who took leave from my life. I became lost in the daily routine of rehab and time passed.....alot of time - when I refer to last year, it's actually more like the last 2 or 3 : solitary recovery and regaining health inch by inch while those others who I used to pray would let me back into their lives continued to live on and move past me while I was stuck in the moment.

I told you recently that I got a wedding invite from one of the few who made some semblance of an effort to stay in touch but I know this guy and know that his reasons for doing so were to comfort himself and appear to be supportive when that's not been the case. I replied with a, 'I'll tell you closer to the time' - which was a half lie because I have no intention of attending, but could very likely have committments at that time (early Dec). I haven't heard from him since and I'm not sure I care anymore : I learned a long time ago how to become largely emotionally detached from people like that and, while I feel no guilt, it still feels wrong to not go, even though he and the others are doing such things for themselves and their absence only proves their indifference to our former 15 years of knowing one another.

I saw another former friend in town today - he went off the rails some time ago and adopted a watered down gothic image, which he's lost in favour of the 'been there, done that, know it all now' sort of thing, and he walked straight past me with his eyes fixed straight ahead and I knew he knew I was there but he was trying to be resiliant and firm in composure, implying that I've no one to blame but myself for their collective absence......collective arrogance is more accurate terminology, I think.

I don't know it all. I wish I did, but what I do know, I feel like I have a firm grasp of, and I've latched onto this :
To wake up in 4 different hospitals over 2 different countries, with about 5 incorrect diagnosis before receiving 1 correct one, going through 4.5 years of mind numbingly slow rehab and social segregation, more than 600 visits to the gym and numerous doctors saying something wouldn't improve when it has done, being left feeling around 90% healthy, as I currently do (often fine, sometimes not, in other words) - and seeing people who formerly were friends I saw daily just come to terms with my absence as though I'd died only to then, while a few stare blankly ahead and walk right past on the street, invite me to a significant day in their life without asking how mine is going, is akin to receiving a kick in the genitalia.

This has helped form a rehab routine which has made me indifferent to fatigue - only improvment matters if it equals having the health to once again stand up for myself rather than accumulate bitter emotion towards spineless individuals like that. Why would I usurp that motivation by forgiving them and turning up to this little wedding shindig? Doing so would be like kicking my own recovery, fuelled by their negative treatment, squarely in the gonads, and I wont have that - I've learned to be grateful to life and god for all I've been lucky enough to recover in terms of health and promised that I wouldn't stop improving until I can post on this site, one day, that a full recovery is possible from this disease. I believe this to be the case, but only by sticking with what works, and turning my back on acquired diligence in order to attend some stupid fondo party do.....doesn't, nor will it ever.

Apologies for rambling, this is 4 and a half years of, family aside, solitary confinement verging on freedom spilling out online : I hope and pray your further improvment is full and shorter than mine has been thus far, but I should add the following 2 points before I click the add reply button :

* For someone who, I think it says on your page, fell sick only last year, you have an amazingly uneffected communication ability - your words are far superior to my own after that length of time

* I -envy- how you communicate your closeness of your family on this site : my own are fantastic, but yourself and your husband are heads of your own - that's a partnership and a humungous responsibility aswell as being a friendship to boot.

[Hope]

Daniel,
Let me say wow, awesome topic.

There have been many trying times for me but looking at those times differently they brought out in me things such as graduating.
I was told I'd never graduate. If you could've saw my sons face as I accomplish a dream of mine. I will never forget,he was so proud of me!
Then there is now going to college.
In Dec. I start a new faze in my future endevours, I start my internship (field work) I have found many things are possible "it all starts with "YOU" (the person) and the mindset set forth.

[Daniel]

Heya Hope,
Great to see you comment again. I think you're a fantastic example of great things coming out of this virus (I have other words for encephalitis but I'll keep it family orientated for the time being) - to go from what you've said of yourself having endured in the early stages of your recovery, to now being in tertiary study and with a mind to helping others and not solely yourself - self centredness has certainly featured in my recovery, and it's a recovery inside a recovery, I find : it's hard enough seeing someone you know going through something hard, but to see it in yourself each and every time you look into the mirror each morning, well - I challenge anyone who has any intention of living not to be a little conceited post infection.

That being said, choosing to pursue a career in counselling, I think, completely turns this point on its head - the intention of helping someone else through their own crisis while you put your own to one side for a moment is something which I admire.

In remembering your time in recovery, if I may ask, how would you rate any previous perpensity to dwell upon yourself on a scale of 1-10? (10 being self obsessed) - I'd still rate near 10 - I'm not proud of that, but it still feels unavoidable right now.

Was there any, singular, moment which made you realize that counselling was for you? Was it a case, perhaps, of the idea always being there but you felt reluctant to go for it? What has been the best moment in your study to date?

[tobecome]

daniel,
i think i tried to get too many things in on my trip to san diego and I was anxious about making sure all details were covered..regarding accomadations, travel, etc.
Regarding difficulties/challenges involved in independent living. I would forget about bills..not get them in on time..be stuck with late fees. I tried to organize as best I could but it didn't always work out. I think it took awhile to feel a sense of balance of remembering items needed at grocery store..making list, etc... using time management tools... when out doing errands trying to coordinate trips so as not to be going back and forth. I also tried to have something planned each day...exercising, meeting up with friend or family member.
tish

Daniel said:

Hi Tish
Speaking in hindsight, how much of the trip was on your mind initially in terms of the test itself and your desire to succeed? Do you think you might have dwelled too heavily upon that and not the simple things like accomodation and expenditure, or did it all seem like one, giant task? I ask as, today, I took a bus into town to the gym - I usually catch a ride with someone I know, but today was the first time I'd had to do so independently for about a year. The city had changed the bus route as a, 'helpful city service' - which is crap because the route is now shorter and no longer goes through the central city terminal (which is inconvenient), but I digress. Until reaching the bus stop, I was only dwelling upon being at the gym and visualizing my routine in order to make it seem more achievable (find this helps, you?) - I overlooked the new bus route until that moment of arrival, and was duely nervous upon stepping off the bus at an unfamiliar place in the city (felt different, different often = bad) - but it actually went well and the day went without a hitch.
Point is this : how much of beginning to live independently, for yourself, after living with your various family members, would you say you felt prepared to do? You say that things like paying bills, shopping and so forth were difficult, but were they spontaneously difficult (ie you hadn't mentally prepared for doing it) or just as hard as you perhaps expected despite imagining achieving those tasks? What aspects of those things did you find especially difficult? Dealing with the cashier? Remembering what you needed at the store? Feeling perhaps like you were encroaching on someone elses life? (That's a biggie, for me personally)

Heya Faith
When you say you live in 'small town' Australia, do you mean like 'Flying Doctors' - in the outback-small, or like a suburb of Sydney-sort of thing? (Christchurch, where I live, would be pretty small compared to cities in OZ) - you shouldn't downplay driving a car at all - driving in a city would obviously be impossible for the danger of large amounts of traffic, but the shear challenge of operating gears, foot pedals and a steering wheel, while you have the emotional distraction of a passenger sitting next to you and potentially speaking/holding conversation, makes driving at all frankly amazing, I think, given the perpensity for confusion post encephalitis : you're braver than I am, that's for sure!
I absolutely feel like I understand what you mean by not realising you've been asleep until you awaken again - to me, it often feels like a chapter break on a dvd when one minute it's midday and I'm determined not to pass out, then suddenly it's 4pm and I'm cursing the lost time as I don't feel rested and I've lost 4 hours of the day I could be rehabbing with - you feel similar to this?

[Daniel]

Hi Tish,
The impression I get in your answer is that the anxiety you felt on your trip was based on past experience having taught you that the various points where you were in some way lacking (memory, organizational skills and so forth), so there was perhaps a natural inclination on your part to assume that such problems would re emerge on this most recent trip you did.

I find it a distinct irony that a major symptom of encephalitis is an inability to recall some of the most mundane tasks required to successfully achieve a given task, yet the failing memory almost inevitably clings on for dear life to the recallection of things which are worrying or which could possibly go wrong while the positives unfortunately get overlooked.

Forget about those bad occurances you mention above for a moment - I shouldn't have asked you about them, what aspects of this trip were you pleasantly surprised that you managed well? I mean, did you feel less tense in doing it, perhaps more confident? You mention having many things to organize - I assume you eventually did organize everything very well : is that something you would have previously expected to achieve or would you have accounted for forgetting to do at least something?

[Hope]

Daniel,
In response to your above questions, let me start off by saying I appreciate you.

You mention:
"In remembering your time in recovery, if I may ask, how would you rate any previous perpensity to dwell upon yourself on a scale of 1-10?"
( You say you are a 10 right? That is not a bad thing at all, I personally think you may see it as such: but you think highly of others feelings and that shows a lot of compassion for others. for ex. being on this site and posting.)
"I know that I have become strengthened and I have grown as a resault of who "YOU" are.

Ok,you asked about me? I never really looked at my feeling, I wanted others to be happy
(I know now it "ALL" starts within yourself and your happiness. That is were "dwelling" on oneself can be very healthy. It helps one to grow and recover.)

You ask?
"Was there any, singular, moment which made you realize that counselling was for you?

In answering this it has helped me, thank you!
My truama counselor has inspired me greatly, and taught me to reach and to strive for my dreams.

For me reaching the "bottom" has strengthened me: and not having the comfort and love of family and friends, through all these hard times has helped me come to the conclution that I no without a doubt that I want to be there for others.

You ask:
Was it a case, perhaps, of the idea always being there but you felt reluctant to go for it?

Yes, I did not feel "worthy" or at least thats how I felt.
I felt like I was nothing "thats what I was told" but I no now that I can and I "want" to be a counselor.

This is a great question (may I say):
"What has been the best moment in your study to date?"

Without a doubt graduating, and knowing I did it.
Knowing how hard I tried..... and how I kept failing but kept getting back up and trying again and again.

Also, keeping with my studies!

[Daniel]

It's interesting that you mention achieving success in graduating from your counselling year : this is becoming an apparent point in my life - not graduating, in recent history, but following through with the eternal question of 'what comes next?'

You mention lacking feelings of worthiness and of being low after infection and all those unfortunately inevitable ways encephalitis makes a sufferer feel, and obviously which I'm all too familiar with also.
I recently picked up about 4 prospectus......es (unsure of plural) about a subject I'm looking to pursue in hopefully the near future : proofreading/editing.

This is something which I define as being a 'normal' type of job - that is, a conventional, turn up and sit at a desk and just do it - type of thing. This is why I chose it : not only do the brochures elude to not requiring any sort of degree to qualify for the course, but it's work which I forsee the end result as being achievable and within my grasp - I enjoy reading other things and writing, as you well know.

Therein is the dilemma which I intend to try and ignore : it appears possible, but the last 4.5 years has been riddled with failure, depression, doubts, evasion of certain concerns I had which were thankfully unrealized, and now I'm suddenly considering attempting something positive?

That's where I see the lacking worthiness - perhaps you can identify with this idea - history has said that promise has been shown in ideas I've previously come up with : I'm an obsessive type of person - not in the creepy way, but the 'must have what I strive for' sort of sense - whether it actually comes true or not. The confusion, therefore, is in the prospect of stopping my current and admittedly useless linguistic studies in order to change direction : I studied Mandarin Chinese in 2003 and succeeded after a prolonged period of time living as a teen/young adult destined for abismal mediocrity at best. Success was different. Different is good. Different is contradictory to everything seeming the same and being less than ideal, such as life felt prior to beginning to study in 2003.

One scholarship and two resulting brain injuries later, and I'm still studying something which a neurologist vehemently said would vanish after encephalitis. It hasn't vanished and it's actually grown by more than 1000 new words of vocabulary acquired since infection and ontop of my pre existing knowledge.

Each new word learned and retained feels like the proverbial middle finger extended to that *add expletive here* of a doctor who shot, not only mine, but the confidence of family attending that meeting down by insinuating that I would amount to nothing because that is frequently the case with encephalitis (though not always, as you've assisted me in seeing).

I kept studying. I began to rehab as I realized doing so helped me think more clearly, and I continued to do the complete opposite of what that *sob* told me back then in his oh-so clinical voice.

That being said, I now see that beginning to pursue editing and proofreading will require alot of diligence to maintain that and also improvment from this virus, which I see daily and feel an end to it drawing near as I write and still have my point clearly in mind after this length.

Giving up Chinese is logical. Sticking with the language is notable but essentially wrong. Doing something new and with a realistic possibility of a future, like editing seems to potentially offer, makes sense, yet it also proves that doctor right - I will likely lose all, or at least most, of my acquired language in trying this new thing. This new study which might also fail. I might get the info pack and not understand it at all : realize the despair of spending thousands on the course costs only to see it all crash and burn, like my trip of 2005 did, after being lucky enough to recover when it went pear shaped in 2004.

Dropping Mandarin and trying something new is the right thing to do, and what I intend to, but it feels like letting go of 6 years of diligent study and collectively 5 years of recovery from brain injury - if I knew back then what I do now about people I once trusted all leaving when the times got tough, bad drinking/party habits associated with them leading to my former moronic mindset, the benefits of exercise and appreciating life, as I do now, then I might have gone for something like editing sooner and be possibly successful right now, rather than slow, as only now discovering something logical feels like to me,

"Took your time getting it, didn't you?" I can hear my critics say in my mind as they all snort with humour while, red faced, I put away the Chinese and pick up something they would inevitably claim to have always known to be the more logical choice - a normal vocation. Something not as 'pie in the sky' as having delusions of being fluent in a frankly scary sized foreign language is.

I've proven critic after critic wrong by taking their perceived end outcome of my health and surpassing it as I proverbially extended my middle finger at them and surged forward with my recovery : promising whoever listens when one prays to themself that I would get well not only to repay life for offering the chance to do so, but my family who've stuck by my side this whole time while friends looked uncomfortable as they faded from sight.

I don't want to prove the doubts my doctor had about me right by giving up Chinese, yet doing so seems necessary to realizing a potentially normal, by my own definition, future where, one day, I might be in a position to repay those who I owe my life to now, or even smile with satisfaction as I see my former friends struggle in their mediocrity while I enjoy a good future and devote myself 110% to those who deserve such respect.

The choice is so, completely obvious, yet incredibly hard to follow through with - stop the Chinese, and start again. I'm good at starting again. Like anyone here, I'm no longer the same as before - he's dead, I'm alive but paying for his (that's pre enceph me) stupidity right now, yet nonetheless doing better, but still not following through as I should be and know he wouldn't.

I followed through with recovery and, lo and behold, here I am feeling more like myself everyday :

The moral of the story seems to be that realizing you're doing the right thing seems to often revolve around your ability to let something dead go : I let my former stupidity and irresponsible, immaturities go and now I see promise again. I let *those* people go and now feel that the emotional weight they made me bear has vanished like much of the physical weight has done by doing the right thing by recovery.

Chinese, right now, feels like the last link to who I used to be. If I let that go, then who I was will truly feel gone and there will be no room for looking back, because the new me doesn't tend to do that with very many things except for this - I don't miss those old friends, although I speak of them often, it's more because of the disbelief at having been friends with them in the first place - how could I have been so dumb?

How did you choose to drop whatever you were doing before trying counselling? Did you experience the same internal conflict when trying to decide if it was the right choice to make? In looking back now, where do you think you'd be if you'd never chosen to pursue it? In fact and, if you don't mind me also asking, if you'd never fallen ill with encephalitis, do you think you would have become as ambitious as you now come across as being today? Where do you think you'd be if you'd never fallen ill?

*APOLOGIES FOR MESSAGE LENGTH*

[Hope]

Daniel,

I can not believe how much you have grown. I really am so proud of you.

I do understand how it feels to "let go" of the old and put on the new.
But try looking at it as growth not as a waste of time (it has been a help hasn't it with your recovery?)



In college I have saw a diverse assortment of people (younge,old ect.)
People including myself lacking the knowledge of knowing about themselves and what to do with there lives.

I really think that this all has been shaping you.,