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!

[Elizabeth]

I was laughing about your comment about saying stuff without thinking first....I've ALWAYS done that, but now Stephen does it too (because of 'e') Sometimes, it's funny and other times not so funny.
I hope you have a wonderful fourth of July. Enjoy your trip and stay safe.

[Daniel]

Hi Kathy. I'm not sure if we've formally met, but I'm Daniel (hi there! *waves*) and this is a subject, isolation, which ruled my life with an iron fist after the infection. I had many friends where I live, went through a large chunk of life with them, and then the virus hit, I got one or two visitations from them and their shocked and uncertain expressions and that was all she wrote : gone, apparently for good.

I spent much of 2007 *despising* them for having chosen to do that and not stick by their friend of a number of years, and I recovered with a sense of anger and hatred, almost desiring to get well just to have the satisfaction of one day seeing their jaws drop on their faces as I walked confidently past them having experienced an intense life experience of recovering and seeing them wishing they had stuck with me.

But, alas, a return of common sense is part of the recovery package, it seems, and I no longer harbour the disdain I once had and instead look to the future with the intent of changing everything for the better : negative and angry former personality first and foremost. That, I believe, has been achieved, but only through discovering/rediscovering things which take the opportunity to have too much time to dwell on such things away, and I believe that doing so, that is, finding new things to fill the time in, is an important part of improving.

If I may ask, what would you say you've discovered, in terms of things you've found you enjoy doing, post infection?

I was shocked about Michael Jackson also : I feel so sorry for the way things were for him. He seemed like a guy who had so much insecurity partnered with an amazing musical talent and iced with infinate fame and fortune. People globally made fun of and parodied him as he changed himself time and time again like constantly spreading butter over piece after piece of bread until there's no more butter left to use and it, like unfortunately his life, ran out.

I just wish he'd had a chance to change himself one last time for the better and at least go out on a positive note, rather than the way he's often portrayed on the television screen.

Still, that's just my opinion, great blog, thanks.

[Kathy Repko]

I totally agree with everything you said. At first, I had visits from a friend and a few relatives. After a while, I would not answer my door or my phone and did not return their phone calls. The isolation I put myself through was the worst experience. What my discovery for me (which I had found many years ago in another life-altering experience was realizing that I had to be there for myself....not to depend on someone doing "it" for me - to be self-sufficient and self-appreciative. In that, I found strength. It is when negative thoughts give way to depression and gloom. I see you are an early riser too. I noted your email was shorly after 5 am this morning. I've been up for a while. Yesterday I enjoyed a full and active day. My sister and her husband (who live in FL), along with their son who lives in NJ took me to the Pirate baseball game (they lost to the Mets,darn) and to a dinner at Buca di Pepa at Station Square. I miss having them around. I never talked so much in one day. LOL. (One of my residual traits...."motor mouth". LOL. I use to be a quiet demure person; now I can strike up a conversation with total strangers in the grocery line. Some ppl, however, aren't receptive. But, I can't worry about what other ppl think. My mother-in-law use to tell me that. Enjoy the weekend holiday!

[Kathy Repko]

P. S. to Daniel: I now enjoy gardening and I found myself the proud owner of a shovel, spreading top soil and even manure. I'm no Martha Stewart but "it's a good thing" having all this spare time to discover and appreciate the birds chirping, gardening and getting back to basics. Just the whole idea of doing things for myself to enjoy life is the greatest treasure.

[Daniel]

Hi Kathy,
May I just say that, before I undertook studying which ate my time, I used to watch the US baseball on ESPN here also : not being American, I just picked a team and followed them, so I picked the Arizona Diamondbacks because they had the coolest looking uniform, weren't the cliched big team (of 2002), and had this amazing left handed hitter, who's name I forget, think they won the comp that year also : wish I'd bet on it.

I get the whole reluctance to answer the door or phone thing which you mention above. I don't know if our reasons are similar, but I dreaded the prospect of seeing anyone of my former friends purely because I was so utterly different, and as time between visits grew more and more, so did my fabricated paranoid list of reasons why they stayed away,

'They think I'm a freak' I thought,
'I'm no good to them now' came the idea,
'Would you want to know you, you mush mouthed virtual drunkard?' I asked, and that was the back breaker, not the reasons themselves, but the labels I created and convinced myself of being what others thought as justification for their absence, all the while overlooking the underlying reality which was likely the reason for their absence :

it wasn't so much how I appeared (though that was undoubtedly a contributing factor), but more that I was so utterly self absorbed - I didn't answer the phone/text message because I saw myself as being so inferior. Rehabilitation and the gym was such an obsession because I hated what I saw in the mirror so intensely and so on and so on.

At that difficult time it was hard not overdoing the gym, studies or whatever else, because those things helped numb the absence of friends - in other words, the solution to the isolation problem was only creating more and more isolation, yet it became difficult to stop as that would have made being alone only worse, so I kept going instead.

Finally, I stopped going to rehab so regularly and cut back, while still maintaining it, and also began to do voluntary work at a local library. Study remained constant and soon the once apparent empty space in life had been filled not by one or two habits, but a bunch of things which left no time to sit and feel depressed over how others I once knew were acting.

Today, 4 years after doctors couldn't tell on initial examination whether I'd suffered a stroke or not, my symptoms are very subtle, but still problematic, though filling the social void is no longer a concern as my routine allows no time for it.

Let me ask you this : what do you enjoy gardening? Do you grow flowers or have a vegetable garden? My older brother became very keen on this also when he and my sister in law bought their first place, and I can see why : having a nice garden can make a place look a million bucks!

[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.

[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]

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]

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.

[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.......