Isolation

[Kathy Repko]

I know all to well about the isolation. Since the illness and losing my job and moving to Pittsburgh, there is too much alone time. No friends to speak of here in this small town but it is quiet here and I have my own house now w/porches and decks now so I can enjoy the fresh air, sunshine and nature. Just the idea that I can pull into my own driveway, wake up to my own place and privacy and work in the flower garden is such a joy. Can't wait till my tomatoes are ready to harvest. One of my favorite sandwiches is just an ordinary tomato one w/lots of butter on toast. Yummo. Can you tell I enjoy food! LOL...... I luv to cook and bake. Sometimes it creates a weight problem for me since I tend to overeat but lately I've gotten into freezing leftovers and giving some or cooking meals for my daughter and her family. She is involved w/her business which is operating a Camp BowWow, a doggy day care nearby. She now owns 2 - one in Albequerque, NM; so she does a lot of traveling west these days. Certainly wish I could see more of my granddaughter, Rhiannon. Her 11th birthday is coming up on the 5th. I think I embarrassed her recently. I notice she is now wearing a bra. Sometimes I just don't think before I act or open my worth. The words and the actions just come out and I do or say embarrassing things.....mostly embarrassing to others. But, that's my residual illness. Another overcast day today but I am loving this cooler weather. The rain sure does makes the flowers and shrubs grow faster.

Still can't get over the fact that Michael Jackson is gone.....but he did it to himself. From what I've gathered from all the media coverage on his life, he was not a happy man and we all knew of his unhappy childhood b/c of his father's physical and emotional abuse. How could his mother have allowed that to happen all those years!

Lunchtime and I hear the birds chirping outside my window. Normally I feed them bread each morning. Need to run to the store to get a loaf of bread for them.

Hope you all are doing well and looking forward to the 4th. I hope to travel to Latrobe to visit one of my sisters and her family and her 9 month old granddaughter who is a pure joy to be around. Aren't babies wonderful!

[Daniel]

It's quite interesting to hear the perspective of a caregiver who's at full health and dealing with the emotional stresses involved in seeing someone they love go through the, I think this is an apt description, hellacious experience which is numerous years and not months dealing with the after effects of an illness which doesn't just physically effect the sufferer, but mentally aswell.


One big personal theme which I've an ongoing battle with is being selfish : feeling this way, I find, often makes looking past my own issues an incredibly difficult thing to do and I miss the fact that those in my family have passed weeks, months and years with birthdays, Christmases and so forth concerned for my health, but also with their own various issues attached around this - in other words, there was a point towards the end of 2007 where I realized that I'm not at the top of the list with other people in the family, sometimes I might be, but often they have their own stresses *and then* they have the added stress of seeing their son/brother going through this hellacious experience in which there's no guarantee that it will ever end - there's a slim chance, but no definately finite time limit. I can't fathom how that must feel for them and the desire to do something about that and not remain so caught up in myself is a major fuel for the ongoing fight I try to stick to this illness - it's melodramatic to say this, but my personal life philosophy towards encephalitis has always been, 'get well or die trying' - so far, so good.

Recent issues with the global economy add salt to their wounds, another birthday recently commemorated signifies a point where yet another 365.25 days have passed since the last time the same point was remembered, and in the middle of winter I find now that this year the tension I feel around me isn't so much a 'get well' feeling, more a 'get on with life' notion, oblivious to how far things have travelled since this same time last year.

I've come to loathe birthdays as tensions are raised, pressure in life is felt and the underlying reminder of another year passing while in recovery remains. I intend to get a tattoo *when* I recover - 'VED : 2???' - it'll read (2??? = an as yet named year) - 'Victory over Encephalitis Day : 2???' - but that still seems selfish to do.

It's this neverending fight with the way others around are made to feel - often there's no choice but to be selfish and self centred in order to give others what they want : their son/brother back.

Feeling as this and seeing the ongoing effects of myself on loved ones who understandably expect, or hope perhaps is a better word, for more improvment than what I can deliver seems almost selfish on their part due to their expectations of my delivering more than what I can, yet my ongoing and unavoidably conceited nature is doing no better, yet we both cancel each other out and end up waking tomorrow to start the process over and move towards better things.

To me, the key is not being critical or overly concerned with seeing either yourself or the effected loved one in any way such as this (and apologies if I've missed the point, I started typing and just went with it so I may have lost it here), but to get up tomorrow and the next day determined to be better than today felt.

[Elizabeth]

Faith...I don't know what Tim feels, but as I told Daniel (above) I feel some isolation in a different manner. It helps tremendously to read how each of you think/feel/deal with things, etc. Stephen just can't get on the computer and write like he desires/use to...too much of his daily 'stuff' /job demands attention and that's all the energy he has. Though I usually read to him what people have written. :-) For me, it's a different kind of worry, fatigue, energy zapper but it's all still there. I imagine, that Tim, like me, is just thankful. I 'm thankful that 'e' didn't steal Stephen away from me totally and that we are still a family. I am thankful for his fighting spirit and the victories that come no matter how small or how long they take.
Like your, our familes don't 'get it'. I don't think they ever will...We need a way to get the message 'out there." I think that is why I like the idea of the tattoo. I am so sorry you had to deal with the stuff you did. It makes it difficult to want to go out or have visitors...at least that is how it is for Stephen and me. We both get tired of 'explaining'

[Elizabeth]

It was easier to understand....thanks. It's sort of like the first thought is still there when the second thought comes...they are both in a competition to see who gets picked...right? So if a third one comes along, it's just another 'runner in the race'. Am I close?

Yes, only the one who has had 'e' can totally understand. Likewise only a caregiver can totally understand what I go through. Unfortunately, there are not many around for me... (actually only one for me who has a sister that doesn't live w/her who had 'e' and we communicate via email.) This helps to talk to someone else but I think having a husband w/post 'e' and a sister with post 'e' are different in a good deal of aspects....but the talking about the similarities helps me. Thus, I feel isolation, but in a different way than you, Stephen and the others that here on this site on a reg. basis. It helps to read how each of you feel/deal with things to compare it to us. Thanks for taking the time to explain to me what you meant. I appreciate that.

[Daniel]

I've stated on a different discussion that I feel one of the key elements to recovery from encephalitis is self confidence - when you feel confident, your heart doesn't race and your brain is less likely to suffer problems resulting from an otherwise usual over abundance of blood to the brain : this can cause dizziness, lack of thought clarity, panic and anxiety aswell as some other things which elude me right now....

....point is, I reckon, if you become more self confident then your ability to physically function or think more clearly improves and the brain will adapt to that new level as normal while you continue to raise the bar further : I *know* this is true as there are things I can do today as normal - go to a crowded mall, catch a bus during post school-time rush with all the kids and so on, which used to scare the living heck out of me, but now they're fine.

If I may ask you, Faith, how has your self confidence improved over the past year or so? Is there anything which you can do today which you couldn't, or were perhaps less capable of achieving a year ago?

[faith]

Hi Everyone,
Daniel, i loved your description of what the whole 'oh my god how do i get this out of my head and into some form of intelligible speech' thing... soooo how i feel most of the time. The effort required to disentangle it all and make sense of what others are saying and then come up with an appropriate response can be so very tiring.... i usually lose track of the whole thing if it is not kept short and sweet.

it is a sad thing to say that i am glad others know how this feels, because like you say, to describe it to someone who is not a carer, or a survivor ends up in a big mess...they start thinking (as my mother in law did) that you have a personality disorder, you are just shy of insane, or something else along those lines and find it really hard to understand...

recently my mother-in-law came to stay (actually she just left on friday), and it was a real eye-opener for me... because i spend so much time on my own here at home, just me and the bub, during school hours...it has become easy to think that i am improving, simply because we dont take too much note of the changes any more, as we, as a family are used to them now...and i think also because when no-one is around, there is no pressure to think or converse along 'normal' lines...

so when Tim's mum was here it really highlighted to me, just how accustomed we have all become to these changes. having someone here to converse with all day, everyday, was *incredibly* tiring... and as a result, there was a pronounced exacerbation of all the other 'fallout' ...
by about day 3, i needed help to cook dinner, i just seized up midway and couldnt plan what to put on, in what sequence etc...
day 4, i cooked the potatoes and the bread, and forgot the rest of the veggies until i was dishing up and the plate looked unusually empty!!
the disorientation, blankness, dizziness and fatigue all became major issues for me...

in the end i grew tired of saying "no, its just the fallout from Encephalitis".... i am soooo tired of saying that awful E word!!!!!!!!

Elizabeth, thankyou for your input from a carer's point of view, i often ponder how things have been for my husband, he is not really the 'talking type', so i am left to wonder what goes on in his head when my new limitations are yet again, preventing us from doing things that we used to love doing...(hiking, extended camping, etc)

I finished up with my phsychologist on friday also... i am now all on my own two feet!!!

great talking to you all again, lovely to have more time for my own ends....

oh, and daniel... not much goes on at parties anyway... its not so sad to be here talking to us :)

faith

[Daniel]

WoW! What a long spiel, just thought I'd say that I reckon much of encephalitis recovery - *especially* the two main themes I just blithered on about above, presyncopal lightheadedness (dizziness and headache spontaneously occurring with vertigo) and socializing, create or contribute to the feeling of isolation. No one but the individual suffering encephalitis understands what it feels like for that person because each person has such vastly different degrees of infection with so many variables surrounding that : bills to pay, relationships to maintain, jobs to find, recessions to fight - all these everyday stresses which everyone faces are compounded by the effects of this blooming disease and serve only to isolate one even more.

Encephalitis is a character building disease...aaaaaah, yes, so much character (ok, just added in one small and questionable comment at the end written with a huge sigh of reminiscence and almost breathing the words as I say them to my computer screen, reflecting on how sad I've become not partying on Saturday night anymore, but instead chatting online)..aaaaaaaaaaaah.......

[Daniel]

Ok, I get this alot from those who've never been through encephalitis - the whole,
'You're mad' - sort of thing (though I appreciate you're diplomacy and realize this isn't what you actually meant, it does draw attention to a lack of ability to understand something unless you've been there yourself - hence, I imagine, why Stephen appears to get it while you're obviously a little confused), nonetheless, I'll try to make it a little less cryptic as I was actually writing the above off the top of my head (I always tend to do that with responses - planning thoughts is so incredibly uninspiring) :

Basically, what I meant was this : I had one idea - lunch on this day, and the idea and picture in my head of it swelled until it was unbearably appealing. Problem is that I was watching something, television, which presents a number of other alternatives to this one very appealing idea and made me realize *every* single alternative idea I saw was *every* bit appealing to the point where the original thing, KFC, was moved alongside McDonalds, Subway, Coke, the works.

In this regard, the damage done to cognitive thoughts resulting from encephalitis is like this (in my mind) : I get *one* idea - it gestates and grows in its appeal in my mind until I just have (had) to have it...until, that is, a new idea arrives which falls into the same category as the first - in this case two separate forms of appealing fast food, then the 2nd one becomes just as wanted as the first and the appeal of the first is diluted but still remains nonetheless.....next ad break = another and another until I've forgotten which one I actually want(ed) and just miss the underlying fact that I'm hungry and couldn't actually care less what gets eaten, just that I eat.

Confused?....wait, so am I...anyway, point is this : 1st thing seems like the best or most appealing only because nothing else has been considered or offered as a choice, when it is, the choice becomes twice as difficult as the number of things to choose from has doubled, then more and more choice is added until there's just an overload and the mind purges the exact memory of what is actually desired in order just to cling to the memory of what there is to choose from.

Essentially, it comes down to an inability to make a firm choice resulting in exascerbated confusion even about the most simplistic of things - in this case food wanted.

If you take this example and move it to a more hazardous moment, crossing a street for instance, there is a greater potential for calamity as the choice is no longer,
'Which food do I want? I want that one, but that one also, and that one and that one..'
the choice becomes,
'When do I cross? Now or when this car passes by? I used to be able to cross when it was that far away safely, but I have to consider encephalitis, oh heck, I haven't checked the other direction in a while, I wonder if anything is coming from the other way? Darn, that sun is bright today and right in my eyes so I should just wait until nothing comes and do it right, but if I wait until then, then I'm training my brain to only act well in moments of complete safety and not learn to react well in moments of tension....' (car passes loudly causing fright and sped up heartrate),
'HOLY ^%$&! That was close! If I'd stepped off then, I'd have just been hit by a car!'

That's the moment where choices become curses, as crossing the road from that moment onward happens with the distinct memory of the car zooming by just beforehand and so finally, with an accelerated heartrate and feeling scared as heck, I step off the footpath and...*BANG*! presyncopal lightheadedness occurs and this memory sticks in the mind while everything else is forgotten until the next day when the memory of the dizziness lingers *ontop* of all those other aforementioned considerations and it spirals into a daily routine of that, singular moment of crossing that road becoming not a test of your health, but rather the point at which you feel like you might die of either a brain haemorrhage, or from being hit by a car.

It's a 'Once bitten, twice shy' sort of thing, and I think socialization has been similar to this, in my experience at least. Being segregated or mistreated by people you used to trust without worrying or being overly concerned, is like discovering that the ability to cross an otherwise innocuous street without feeling like you're about to die in the process has been ripped away from your waning list of abilities.

I hope that's a little easier to understand. I realize that I speak from my own experiences and they may differ from others, but this is the clearest I can explain.

[Elizabeth]

Okay, I read this and was pretty confusing..thinking Daniel..what the heck are you talking about? I told Stephen part of what you said and he was like "YES!" that's how it is. Then I read him the rest and he's just nodding away. I say "so you understand?" "Yes, I'm afraid I do" he replies. So, um yeah...that's how it was and still is sometimes even now. He says he gets information overload and he feels people look at him likes he's stupid, because he can't answer a simple question and yet, for him, it's NOT a simple question.
I learned a lot with this one conversation. :-) Thanks.

[Daniel]

That's what my family here in New Zealand were told by the doctor (American chap : great guy, if memory serves) in Hong Kong. Basically, I've been led to believe that the original degree of damage to my brain presented itself in a similar way to someone who had suffered an extremely mild stroke : ie (and I type this in light of what little I actually know) the imbalance, headaches, complete loss of strength and ability to even sit upright, exaggerated slurry speech, extreme cognitive thought difficulties (eg not knowing the year, where I was, hallucinating that I'd seen things which weren't there) - it was stroke, then MS, then finally the more merciful option of encephalitis was settled upon.

When you mention Stephen having difficulties with self expression, I think I might have a take on this also, whether it's been similar for him I dunno, but earlier on in my recovery my mind worked like one of those 'Viewfinder' kids toys, which took a single frame image and shone a light on it inside the machine itself allowing the child to see it clearly.

My memory worked like this - I'd have an idea in my head, say, something I wanted to eat for lunch, and I'd have that image and that image alone in my head. Then I'd park it in front of the television and see a commercial for, say, KFC, and the idea of the sandwich I wanted would very quickly change into an image of fried chicken, then it became sandwiched in a bun as the McDonalds commercial arrived, then the mustard swirl ontop as I saw the Wendys hotdog, but of course I'd need to wash that down with something, which is when Coke made an entry, followed by Sprite, then the inevitable worry that my wasteline would suffer so I watched the fruitjuice commercials, only to realize that these had sugar, so I watched for the bottled water, only to get concerned about the tap water here (which is actually cleaner) and I'd wonder if I was gonna get more campilobacta from it, so the bottled water stayed and I was happy for the next 10 minutes of tv viewing as I'd successfully recalled bottled water, even though I'd begun thinking about a sandwich which had turned into chicken.

Point is that when I began a conversation with someone about anything, I'd start on track and fine and they'd follow my meaning, but what I was saying and the physical ability of turning cognitive thought into spoken words became lost as my imagination became swiftly fatigued and struggled to keep up with the energy required to convert thought into speech, and like the viewfinder, my train of thought could only display one idea in the head, so when that family member checked their watch, saw it was lunchtime and asked,

"So, Dan, what do you want for lunch today?"

there was suddenly this veritable explosion of ideas as though the banks of nutritional desire had just exploded and ideas had flooded my mind about what was wanted for lunch : KFC, a sandwich, Coke, Sprite, juice, or was it water? And, as the person saw the indecision in my face at such an easy question, they may have then asked,

"What are you doing today?" - which reset the whole process as I forgot that lunch was the topic and only thought about activities to do that day.

Maybe Stephen will agree with this, but with encephalitis, to me, it wasn't just a case of forgetting the day or hour, it was also forgetting the topic of anything, until *everything* could possibly be what was being discussed and it felt like a lottery or stab in the dark just to correctly keep up,
"What are you doing today, Dan?" someone would ask, and my first thought would be,
'Aren't I going to KFC?' until I thought on that as the conversation continued about something else and I answered the question of 'what's on tv tonight?' with,
"A 2 piece quarter pack!" triumphantly exclaimed as I anticipated the impending calorie filled grease feast fest.

People see only the result of such thought processes, a long list of deciphering in the mind what is and isn't the topic, but always with an inevitable tendency towards an ecclectic alteration of direction of thought until what is ultimately answered is so dramatically wrong to everyone but the sufferer, who becomes frustrated and irritable as a result after thinking they were so right when they were so utterly wrong.....or just too slow in their thoughts.

People see these things and it either scares or amuses them, few in my experience (outside family and medical staff) have the patience to see that this aspect of thought is lacking and that I didn't mean anything insane or questionable by the misinterrpretation, I was simply too ill and underconfident to keep up.

Not being too ill begins with self confidence, I think. Regaining independence also. Self confidence is the holy grail of encephalitis recovery : it governs socialization and much of physical function.

My deepest sympathies go to anyone here who finds theirs lacking and it having an effect on their life : my formerly and diabolically lacking self confidence stole some things which put me in a *very* dark place for a long time until I saw that what needed to be rehabilitated before anything, was having more confidence in myself : the gym, studies, work, this site...all these things are simply tools (and I mean this site in the technical sense, I care for anyone I speak with) to help facilitate more self confidence and ultimately rehabilitate a sense of normality and empower one with the ability to overcome any sense of isolation.

Case and point is this : I believe the above rant is ordered and makes sense : it's the longest onlne spiel I've written in 4 years, my theory is correct.

[Elizabeth]

I know I don't totally get the isolation thing because it was Stephen who had the 'e' but I do know he has felt the same way. I know he feels badly because he's a 'different person' now and he focuses on that so much, but as his wife, I am just so extremely happy he's here...alive and with our family. Things will never be as they were before 'e', but still I'm thankful that we still have him here with us.

It's difficult sometimes for Stephen to say what he's thinking...the words won't come and he avoids talking to people some times because of that...but I find that the youth, etc. enjoy talking to him and they don't seem to notice as much as I do that he stops for a few seconds or is having difficulty with the concept he wants to get out. I think it's more our preception than theirs.
I love fresh veggies from a garden but no place for one here.

Oh and Daniel, did the doctors think perhaps you had a stroke originally? I ask because that was one of the things they checked stephen for initially.