Encouraging things you see

[Daniel]

Obviously, like anyone, I feel motivated by improvment and feeling like something which I didn't understand before, I do now. I recently posted a video of myself standing at the opposite side of a street which I once found impossible to cross, and today completed the 294th crossing unhindered by a serious attack of presyncopal lightheadedness, or a spontaneous headache and dizziness, if you're unfamiliar with the term I just used.
The personal significance of this video isn't quite as evident as it felt when I uploaded it, but I did it anyway and encourage all others on this site to follow the lead of those like Stephen, Elizabeth and Hope - and post yours, should you feel up to doing so (it gets easier to do after the first one, I think).

This road nearly ended my desire to keep improving. This road nearly ripped a hole in my confidence. It remained the same, not mocking or daring me to fail again, but just sitting there like some bully who's just thrown a piece of food which has bounced off the back of your head in class and then looks innocent when you turn to see who did it. Now it is not a problem to cross, and I know thinking this way is despite a past history of failing to cross there daily, sometimes twice in one walk (but usually only the first time).

This being said, let me ask you : what times/symptoms/aspects of illness, did you once think would never improve, either fully or better than before, yet it/they have clearly done so? Why do you think that was? What is your next goal to achieve?

Be as specific as you like - the moreso the better, in fact.

[Daniel]

I love this song, 'Shadow of the Day' by Linkin Park. I find it a little synonimous (spelling? synon...s'non.....to heck with it : similar to) the way I see the re emergence of health from this illness. Forget the lyrics for a moment, I prefer the imagery of things around going to pot, like ones health does during a crisis such as this and, at the end, the lead singer is left standing in the rain while chaos and bad weather surrounds him, like he's begun in a simple place - as he does by being in bed at the beginning and as anyone with encephalitis inevitably ends up in by being in hospital or recovery, but inevitably moves from that point into the chaos which is post hospital recuperation - dealing with being ignored by others as they move chaotically past you as you stand stagnant and almost reassessing life and priorities, ultimately left with a perspective which I think few others are cursed/blessed with understanding as the majority take their perfect or unhindered cognitive functions and physical abilities for granted and move about their day in either deliberate or accidental disarray (at times) - I now consider things more deeply before doing anything - taking factors into account that I once didn't need to consider :

* Will I suffer dizziness by going out at this time of day?
* Will I avoid the school rush when I come home?
* How am I going to get through the next year of living if I don't improve, will I despair and give up?

....and so on and so on : obviously everyone has stresses on their mind about things during their day, but I think when you have to take some of the most simple things into account like appearing like a simpleton or almost fainting in pain just for trying to cross a road, the chaos becomes more apparent in the mind and, almost like the mathematical term of two negatives making a positive, my lingering disabilities and fears over the future often leave me, not fretting or frantically scrambling, but almost numbly standing in contemplation as life whizzes by at its frantic pace with the vast majority trying to keep up while I remain stagnant, yet strive for the freedom they possess in the form of normality and, when I'm not standing dumbstruck or in contemplation, I chase that with every ounce of tenacity my body will afford.

It seems almost stupid until I consider what the alternative of doing nothing would bring, which I think is far worse, so I choose the lesser of two evils and chase recovery at 110% - to be 4.5 years post infection and still doing that is quite encouraging I think.

[tobecome]

I'd say encouraging. For me it is a sense of having a new game plan for my life. I think this illness has made me realize the preciousness of life. Sometimes I feel like I'm frozen between doing nothing or too much. I think the key is finding one's balance. I would say this for physical, emotional and cognitive improvements.

[Daniel]

That's quite a nice way of seeing things - attacked by a neurological infection which alters who you are in somewhat dramatic fashion, threatens your life or at least the quality of it and, despite feeling stagnation and lacking direction, you see yourself not as having good reason to allow all that (and possibly other things also) to make you irrepairably disgruntled in life, but instead value it more than when you were at full health.

I admire that take on things and try to share this point of view also : I don't thank god for getting ill, but I do for what's been realized as a result of experiencing this illness - I now see that life isn't something you simply take for granted and that anything worth having requires it to be earned - years of reclaiming small amounts of health and self confidence each day with intense lows offset by the occasional high, has made those high points more frequent and the lows less damaging - I used to regard vestibular dizziness and lightheadedness as an insurmountable aspect of this condition, now I know it's possible to overcome it and, although it's still a daily fear I have of it transpiring despite not actually happening, I know that feeling this symptom being gone will happen one day soon, and I see that day as being a pre emption of the departure of this entire disease also.

Seeing things one step at a time is something which is now more encouraging than before when only the ultimate hope of being well again was concentrated upon. Sometimes I forget that a-z requires also b-y to achieve : right now, I feel at about w, how about you?

[tobecome]

daniel, i think sometimes i see myself at about a Q and other times M...
maybe one step forward half step back.. I think I am getting to the employment area and it is a very anxious time especially with so few jobs available. I think my self esteem has gone through the wash...especially with severe cut offs from family members. I am greatful for the family/relatives and friends in my life who have supported me along the way. These family members did but then tried to do somethings behind my back and it didn't go well. I think they were trying to do what they thought was best at the time for me..but it wasn't what I thought the best would be...especially when I wasn't in on the decision.
take care,
tish

Daniel said:

That's quite a nice way of seeing things - attacked by a neurological infection which alters who you are in somewhat dramatic fashion, threatens your life or at least the quality of it and, despite feeling stagnation and lacking direction, you see yourself not as having good reason to allow all that (and possibly other things also) to make you irrepairably disgruntled in life, but instead value it more than when you were at full health.

I admire that take on things and try to share this point of view also : I don't thank god for getting ill, but I do for what's been realized as a result of experiencing this illness - I now see that life isn't something you simply take for granted and that anything worth having requires it to be earned - years of reclaiming small amounts of health and self confidence each day with intense lows offset by the occasional high, has made those high points more frequent and the lows less damaging - I used to regard vestibular dizziness and lightheadedness as an insurmountable aspect of this condition, now I know it's possible to overcome it and, although it's still a daily fear I have of it transpiring despite not actually happening, I know that feeling this symptom being gone will happen one day soon, and I see that day as being a pre emption of the departure of this entire disease also.

Seeing things one step at a time is something which is now more encouraging than before when only the ultimate hope of being well again was concentrated upon. Sometimes I forget that a-z requires also b-y to achieve : right now, I feel at about w, how about you?

[Daniel]

I'm actually unfamiliar with the phraseology 'either the Q or the M' - but I assume that you mean you stray from one, positive, sense of self confidence to the alternative negative.

One thing I find in communicating with other recoverees of this illness, and presumably illness in general, but encephalitis is the one I have experience in now, is that recovery from encephalitis is synonimous with lacking self confidence : I'm yet to meet another survivor who claims to be confident like they used to be - I'm certainly no exception to the rule myself, I should add, but I'll never forget the speech I got from my wanker neurologist at the hospital in 2008. He started harping onto me about adaptation and not actual improvment, I think, in order to cover his own butt from having the finger of blame pointed at him should I not have improved past that point.

I spent the subsequent months deflated and down about my future - it was 3 years post infection and I'd busted my butt to get back what I had by that point and, up until that meeting, I was convinced that full recovery was a possibility. Whether that is still actually a possibility is open to debate - I certainly side with the positive, 'it's possible' notion and, as such, I actually felt like hitting that crettin doctor when he said what he did in his typically, 'matter of fact' manner.

I reckon the gaining of self confidence is assisted by seeing both sides of the coin - I'd seen and felt the never-going-to-recover side of things, but then begun to improve to the point where my mindset had, right at that time, clicked onto a 'maybe-it-might-be-possible' line of thinking, and one which my family did and continue to do a great job of supporting me in maintaining.

I detest people who leap to the negative or do something which undermines positive emotion - making someone in recovery from brain injury miserable only serves to prolong their recovery, I think - hence why I imply ill feeling towards former acquaintances in my life - their absence prolonged my social rehabilitation and created a need to question my entire teen-early adult life in terms of those who I'd chosen to associate with - if I was wrong about all that, I thought, then am I wrong in thinking that a$$hole doctor was incorrect in telling me I'll never improve?

My point is that people often don't seem to realize the domino effect they can have upon a mindset - one person says something bad or is evasive and puts you into a depressive mood when a doctors appointment arises and the ability to see his saying, "You'll never improve and only adapt" as being his covering his own sorry butt is made harder because I was already down at the time about the solitude and the symptoms and all those other things you no doubt are also familiar with.

The only way I've found to successfully negotiate those down periods where those around you appear not to respect you or mistreat you in some way, is by concentrating on something in the near future as a short term goal - for me it was then being at least 2 or 3 days clear of presyncopal lightheadedness : achieving that revolved around rehab and concentrating on what I'd learned in order to not experience it. Today I'm 313 days without a serious spell of it and wondering if I'll ever again have a full episode. I found the only way to get around the ignorance of those people - outside immediate family - was by being a little selfish and concentrating upon forming a daily routine in order to have less time to dwell on negative feelings harboured :

* I can't think about them while I'm exercising at the gym, I just think about what I'm doing there instead
* " " " " studying as I just concentrate on the vocab I'm looking at....

....and so on and so on - filling the void they leave open with a daily routine to keep busy and create new goals to reach until you happen upon one of them in town or something one day and see the instant higher respect they outwardly appear to have - not addressing you condescendingly, but then as an equal (this happened recently, I should add) - moments like that usurp the negativity promoted by those who avoid or ignore any need to show respect and show that, with brain injury, no one knows how improvment will occur, but as long as you find a method of remaining positively minded, you can at least be in control of how you appear to those people in the future as they see that improvment has been made, and they apologize by giving you the respect you thoroughly deserve.

I respect the fact that you write as anyone who I'd meet elsewhere online and are not apparently hindered by brain injury in your words - poor grammar, too high useage of colloqueal terminology, leaping to being overly supportive without any ability to back that up - I think just listening is all most on a site such as this really want - could be wrong, what do you think?