How do you deal with your day?

[Daniel]

I'd say it's utterly human to get down about life while recovering from encephalitis - often others see it as being sunk in depression or having something on the mind or whatever, but how does one try to adapt to avoiding the occurance of such a feeling? To wake up in the morning and begin the day at less than capable brain function, but know that even as the day wears on it won't improve, perhaps even possibly feel worse with fatigue at the end of the day, and to know by the point at which fatigue sets in you may very well struggle to confidently remember having not felt quite as bad when the day first began, can make getting through any day a long and painful process.
Within this process, are the other things throughout the day :

- the way friends/family act
- getting outside to wherever in an anonymous way
- being noticed in public when something occurs like vertigo, for instance
- feeling guilty over not being able to work or to do so at a desirable capacity
- thinking about the future

and so on with various other possible concerns - many I know just assume that each day I'll get up, rehab, study, and whatever else, and do so with a high degree of success which they feel begs the question they ask, "when are you going to move on with your life and do something?"

Normally, I'd probably be inclined to answer, "My god! You're right! What have I been doing all this time?" but when you factor in the shear difficulty of anything done with the after effects of encephalitis and do so either sometimes sounding or appearing drunk, or possibly constantly, while feeling the previously listed daily stresses, that one comment can belittle or destroy any inclination to sit down at the end of the day and feel good about having done *whatever* you can in order to improve - at least I find this to be the case sometimes.

In order to try and ignore the tendency to feel depression, I've found that the best way to achieve it is to remain as busy as possible :

- get up, do 1/2 hour of eye/balance rehab
- go to gym
- bus home independently
- do 1/2 hour walk
- study 2-3 hours
- email
- row in the evening on my rowing machine
- do 1/2 hour eye/balance rehab before bed
- write for an hour or so (I'm fictionalizing my recovery for future memory)

All this, on a heavier rehab day (a slower one would be minus gym) would take around 6-8 hours of the day. I don't say this in an attempt to appear great, but to illustrate what I do to ignore the inclination to stress over work, lost friends, absence of girlfriend and so on : keeping busy with improvment distracts me from these things while I also improve my health.

What do you do to combat depression or a feeling of hopelessness? What sort of thing do you find to be your distraction? Do others make you feel similar to how useless I'm sometimes made to feel?

[tobecome]

daniel,
thank you for your kind note. It was a good surprise and came at a good time. I had a bit of a hard day yesterday and still feeling foggy from it a bit. So I thank you for taking time to share some positive thoughts.
Hope this finds you doing well and pressing on..
take care,
tish

[tobecome]

I have found that doing any sort of exercise has been helpful as well as eating healthy. Re: hopelessness or feeling depression I try to have something to look forward to ...it could be a bath, swimming, taking a nap, visiting a friend, etc..or an occasional short trip/overnight stay at park or relatives.
I have found that when I am feeling knocked down by someone I tend to retreat and then may isoate myself for a time..so it can have double edge to it. I meet with a counselor 1x month and have cranial sacral massage 1-2 x month if possible.

[Daniel]

I'm coming back to this discussion after regrettably neglecting to reply to it initially, though I have no idea why that is because what you say above is actually exactly something I agree with intensely :

Find a goal and concentrate on that in order to avoid allowing life to get you down.

This is precisely true. I had a major falling out with old friends recently - they chose to be utterly cowardly and try to be overopinionated and arrogant via text message, rather than saying anything to my face - sort of a lecture using informed terminology on how it is that our lacking contact is my fault (more or less) and how I've no one to blame but myself for their absence.

There is an element of truth to this : recovery is an unashamedly selfish act, yet I've dwelt on it in the mental and physical sense at 6-10 hours/day for about 3 years now while they've continually manuafactured their own reasons to get on with their own lives and do nothing to support me, despite having been friends for some years.

As I read this, I can see how this may come across as self centred on my part, so I'll explain a little more : I realized some time ago that in my compromized neurological state and given their complete immaturity at the time (party drinkers, something-for-nothing types) I needed to pull finger in order to return to the level of health condusive to being allowed back into their circle of friendship which I was so heavily involved in before falling ill/going overseas.

So I began to do something about it : 1 hour of Chinese study/day became 3, my 10 minutes spent on my home fitness equipment became 20, with a half hour rest afterwards. My 10 minute local walk became 30, I discovered eye/balance rehabilitation techniques, and I joined a gym which required 3-6 days of the week at 2 hours/session plus travel time to accomplish. I joined this site and others and met people both here an elsewhere who I've grown a much higher degree of respect for than I've ever had for those former friends through reading of all your journeys through a virus I hate with everything I have. Family have grown closer also as they saw my days spiral into 5,6,7 then 8+ hours/day of activity designed to give not only myself, but also them what they wanted : their son/brother back as he used to be.

As rehab grew and voluntary work presented, replying here and doing whatever else became paramount to improving, I discovered that not only was I in a good mindset to improve, I was actually improving *way* beyond where I was told I'd stop and go no further. It felt like the proverbial backdoor had been left open and, well, I just had to see if it'd been left open for me.

Rehab and improvment continued and soon, at the beginning of this year ('09) I realized that, while still not at full health, my level of health suggested and still today suggests that where I want to be is still a distinct possibility, and my goal of repaying the debt owed to family could very well still be realized - *NOTHING* will stop me from achieving that, I don't care what it takes in order to achieve, that is happening come hell or high water. (as long as it's not illegal, of course)

....then I got the guilt trip text from ex friends, who I'd spent so long building this daily habit in order to forget about, 'you're being selfish' they implied, 'I don't know you anymore' they said, and I heard the violins of pity playing in the background to their sentiment :

'we no longer know one another because you gave up knowing me' I thought as I replied in a way with ambiguous and indecisive manner, 'I'm not going to jeopardize all I've busted my ass for in order to stop and pat all your egos, saying that you're all doing a good job of being friends when you're not, I promised not only my family, but whoever listens to thoughts or prayers when you feel in the worst depression that I would get through that time if they allow me the improvment I desire, and now you ask me to stop fulfilling this ambition to pat your ego for long enough to leave my life again once you feel satisfied?' I thought as I brushed them off.

I think the biggest realization I've come to in recent years is this : if you make a promise to anyone who you respect, like family for instance, or god him/herself, then *they're* those who you don't stray from doing whatever it is you promise - friends have failed me time after time throughout this nightmare, but family and my growing gratitude and respect for faith have been relentless in their mercy and rewarding of my perseverance.

I sat on my bed feeling awful after I answered this message and effectively performed social suicide : there is no going back with them now, they won't wait any longer as it doesn't suit them to do so, but therein is the solution : family and life/god (depending upon whichever idea you subscribe to) has waited and they have provided the patience and undying compassion to allow my sorry ass to nearly overcome something which my friends abandoned me in the middle of, only to expect me to more or less turn my back on family and faith/life when they perceive me as being at sufficient enough health for them to know again.

They will never understand learning to walk again, learning to speak again, to breathe independantly, go from bed ridden to confined to a wheelchair, to two cruches, to one, then be left faced with the choice of whatever day being the one where there is no more walking assistance any longer, only prayer that it goes alright going anywhere.
They'll never understand solitude with a brain injury on a level which made me once doubt the desire to continue living, nor the endless days of wondering if I'll be noticed or spoken to on that day.....

...they just get up and keep living their lives without making any attempt to try and be supportive to any of the above, while family, life itself, and people scattered throughout the world who I've never met, all put them to shame and make me see that I've outgrown them : they are the past, and who I used to be. When I frequently sat on my bed in mid 2006 through to mid 2007 and contemplated if persevering for seemingly inevitable failure was worth it or not, I realized by the end of that last year and since then that it's *always* worth it, but only if you look forwards and never back.

I used to be inactive, I used to be overweight and unmotivated. I used to take family for granted and spit in the face of life or whatever else - yet all these people and things I so arrogantly defied in favour of knowing those same individuals who sent me a text lecture on my cellphone and seemed to offer me one last chance at knowing them, will never understand that I don't need them anymore - I need to move on and make a new future - if that's to be in solitude then so beit : I'd rather be alone than know them.

Successfully adapting to this potential reality is successful through obtaining a future goal : I will get better or die trying : not in the suicidal sense, more in the 'I'll never stop' sense : they hinder that ambition, all those others whom I have undying respect or love for only advocate it.

I sat on my bed last week and juggled this reality in my mind and realized that my days are just too busy for them anymore, all that needs to be done is to stick to what I'm already doing : trust those who've given me reason to trust them, stick to the program I've worked my ass off to achieve the continuation of and whatever happens, above all else and the single most important thing to remember : I'm not who I used to be, the virus killed him some time ago, so unlike that individual, *I'll* never look back with any sincereity or serious intention of returning to being that individual again - I *hate* him and my former friends are nothing more than a grim reminder of everything I've spent the past 3 years moving past.

I deal with my day by sticking to my plan and ignoring the temptation of straying backwards towards a life of self doubt and misery, which knowing my former friends would absolutely encompass.

Dealing with your day is *absolutely* letting go of your past - obviously, I still have residual emotion about mine, but any inclination to physically return is completely gone, and I thank god for that.

[tobecome]

daniel.
I just want you to know I understand what you have written. I am proud to be a friend and committed survivor. "Press On"...
take care,
tish

[faith]

Daniel,
there is something special about people who understand death - it means they also understand life, and love. love is complex and difficult, and as you and your parents have experienced, usually is capable of withstanding great amounts of pain.
when i read your comments i see a boy who got sick and grew into a man during his journey to recovery.
i am proud to know you and consider you to be a friend worth having.
faith

[tobecome]

faith,
you are gifted by the words you share...i thank you..
tish

[Daniel]

Faith,
It's funny that you should use the maturity analogy : I agree implicitly, encephalitis has been a life lesson in realizing I'm no longer 18 years old : at the same time, I've learned through it that many men I've met look at growing up in completely, I think, the wrong way : they listen to completely different music just because it seems more mature, they dress in ways purely to appear grown up and they grow this stupid sort of arrogance which isn't mature, it's a 'holier than thou' persona.

I reckon that maturity and being adult is not turning your back on that which turned you into the individual you are now - listening to rock music while wearing casual, non offensive clothing and enjoying life with a laid back approach is just fine, as long as it's understood when it is okay to do. Some people I knew for a number of years decided to age with the former mindset : overly masculine, sports betting, going to bars after work and generally grunting and pretending to be stereotypical men just because they perceive that as growing up - I perceive that as an immature and somewhat pathetic approach to the emulation of someone elses ideals devoid of any sort of individuality whatsoever.

If I'd never fallen ill, I'd be no different from them - not grown up, but pretending to be and destined for one heck of a midlife crisis having never lived.
Encephalitis has been one heck of an exercise in maturity - if you see some projected in my words, then I sincerely and gratefully thank you because I still feel like an individual and like someone who isn't trying to impress someone else with a put on persona - I love rock music, love it to death and will never stop loving it, I dress for the occasion and when there is no occasion - I'm a tee shirt and casual pants kinda guy who's not afraid to wear his Penrith Panthers fan shirt (big NRL fan) - all that I think that matters is that you adapt to the situation - when I'm at work, I dress appropriately, there's a time and a place for turning up the stereo and it's after the work and study has been done.

There's more, but you get the idea - following the ideals of maturing without any consideration towards individualisms or freedom of self expression, but instead doing something, like listening to the complete opposite genre of music just because it seems more intelligent to do, is a crock, and I admire anyone who resists the urge, sticks to what they like, but knows the ins and outs of when doing anything is appropriate - that, to me, is true maturity - what do you reckon, am I full of it?

[tobecome]

as stephen said awhile back "your full of it" but the "it" is all so good and refreshing and thoughtful.
When I read your post it made me think of the verses ECC 3 1-8 which is also a song.
A Time for Everything
There is a time for everything, and a season for every activity under heaven;
a time to be born and a time to die,
a time to plant and a time to uproot,
a time to kill, and a time to heal,
a time to tear down and a time to build,
a time to weeep and a time to laugh,
a time to mourn and a time to dance,
a time to scatter stones and a time to gather them.
a time to embrace and a time to refrain,
a time to search and a time to give up,
a time to keep and a time to throw away,
a time to fear and a time to mend,
a time to be silent, and a time to speak.
a time to love ad a time to hate,
a time for war and a time for peace.

This along with..
this is what Yahweh asks of you: only this, to act justly, to love tenderly and to walk humbly with your God. Micah 6: 8

Ther is one other one I can't find right now but I will share it when i do if you'd like...
take care,
tish

[faith]

Daniel,
i think you are onto something. i read a book once and it spoke about the necessity for an "egoectomy"...the author suggested that only 6% of the population ever truly examine their moral compass and actively, that is consciously, choose its bearings.
i am finding that E is making me softer, but stronger. my life is becoming streamlined in a very fundamental way.

Tish,
i love that verse. i use it a lot in my daily life.

i will share one of my favourite poems with you:

When love beckons to you, follow him,
Though his ways ae hard and steep.
And when his wings enfold you yield to him,
Though the sword hidden among his pinions may wound you.
And when he speaks to you believe in him,
Though his voice may shatter your dreams
as the north wind lays waste the garden.

For even as love crowns you so shall he crucify you.
Even as he is for your growth so is he for your pruning.
Even as he ascends to your height and caresses
your tenderest branches that quiver in the sun,
So shall he desend to your roots and
shake them in their clinging to the earth.

Like sheaves of corn he gathers you unto himself.
He threshes you to make you naked.
He sifts yuo to free you from your husks.
he grinds you to whiteness.
He kneads you until you are pliant;
And then he assigns you to his sacred fire,
that you may become sacred bread for God's sacred feast.

All these things shall love do unto you that you may know the secrets of your heart,
and in that knowledge become a fragment of Life's heart.

But if in your fear you would seek only love's peace and love's pleasure,
Then it is better for you that you cover your nakedness and pass out of love's
threshing-floor,
Into the seasonless world where you shall laugh,
but not all of your laughter,
and weep, but not all of your tears.

Love gives naught but itself and takes naught but from itself.
Love possesses not nor would it be possessed;
for love is sufficient unto love.

When you love you should not say, "God is in my heart," but rather,
"I am in the heart of God."
And think not you can direct the course of love,
for love, if it finds you worthy,
directs your course.

Love has no other desire but to fulfil itself.
But if you love and must needs have desires,
let these be your desires:

To melt and be like a running brook that sings its melody to the night.
To know the pain of too much tenderness.
To be wounded by your own understanding of love;
And to bleed willingly and joyfully.
To wake at dawn with a winged heart and give thanks for another day of loving;
To rest a the noon hour and meditate love's ecstasy;
To return home at eventide with gratitude;
And then to sleep with a prayer for the beloved in your heart and a song
of praise upon your lips.

cheers,
faith

[tobecome]

thank you it is beautiful.
tish