"You made me"

[Daniel]

I've made no secret on this site about the fact that, like anyone here I imagine, old acquaintances, or people who I formerly associated with regularly, hid in the shadows when I came across as being horribly brain injured, as used to be the case, and avoided keeping in contact.

It was this reaction which made me......somewhat down about life for the first year of recovery. By the end of that first year, I made a promise to myself, 'make one, final and decent push for health, or chuck in the towel' I thought while in a particularly self absorbed state of mind.

I'm relieved to say that I made the right choice and began to do something about the problem. I used the avoidance of those....people as fuel to get up each day and try and take the encephalitis virus to the cleaners. I felt nauseous with hatred sometimes and, rather than allowing my former irresponsible mindset to manifest itself in the form of taking it out against anyone, I let it rip on the virus and on recovery and rebuilding my health which, at the time, I didn't know from day to day how each day was going to feel - like anyone here, some days were utterly intolerable, either physically or emotionally.

As time passed by, these people : those grown up with, who I'd shared life experience after life experience with, remained gone or only sending a brief text message at a birthday or Christmas and, in time, national holidays and personal celebrations began well, but ended with such reminders of how I'd come to resent being omitted due to brain injury.

I continued to progress, reclaiming small milestones of normality over each passing month until passing months became passing years of hot and cold climate change mixed with smatterings of token greetings but general isolation.

This year, 2009, I've begun to feel very consistently close to near normality again (I don't buy into that question, 'what's normal?' because everyone has their own idea of what normal is with some degree of definition), and I got a few additional returns of recognition from....those people. Family jumped at it immediately,
"Why don't you go see them, don't you want friends back in your life again?" they asked and I answered, in my mind, with an emphatic
'I don't want people who up and leave when the going gets tough only to return with apparently open arms when the problem subsides to come within breathing space of me',
"I'll think about it" I replied as I walked out the door and hit rehab harder than usual.

I used to be a complete slob. I used to be utterly lazy. I used to virtually have a deathwish-esque mentality to my approach to life, but encephalitis has provided me a chance to re evaluate such things.
I'm no longer a slob. I'm no longer lazy. I love life and thank god daily for allowing me to remain in it......
....all that change because of encephalitis, and now these....people, who were formerly so absent and allowed me years of isolation and solitude and grief and depression, just begin to filter back into life with an apparent expectation that I'll ask,
"How high?'
When they say,
"Jump"

I say that I've learned a great deal over the past 4 years about valuing life and appreciating those who matter and, I think, going back to knowing these.....people, would be a slap in the face of those who unwittingly advocate my making that very bad choice. I want my family to know how much I detest the abandonment of those people and why I now am sickened by the suggestion of going back to them. It would say I've learned nothing. It would feel like an emotional junkie going back to a bad old drug. I want to tell family this, but their own emotional state in regards to how they view me, I get the distinct impression, is greatly influenced by them seeing my valiant return to the side of former friends, as though they are the last piece of some oversized puzzle I'm putting back together.

I've been creating a new puzzle for some time. I now see those former friends as being a backward step in social recovery. I haven't gone at recovery for 4 years like I have just to end up back at square one, to me, that would equate to having learned nothing.

....So, therefore, I'm gonna float out a discussion open to others either formerly or presently in the same position : how did you go about creating a new social life/how do you intend to do that? What did you do or plan to do? How did you overcome feeling hatred or resentment towards people who left you for dead, and begin to trust others again?

I feel like I'm the product of those people who turned their backs on me. I feel hateful about them to the point where I just wanna get up, do what I need to, and go to bed again at the end. I know that's a surefire bad way to live life, and I'm looking for ways to get around it but, I feel, when your social confidence and standing has been put through the proverbial meat grinder and you've spent years numbing yourself to that with monotonous and rigid rehab routine, what's left is a large and empty void in life and I think they helped create that. I'll never forget and am unlikely to forgive for that. I don't think I should have to. Instead, I'm going to move on past it.

(Just a note to anyone who plans on saying anything diplomatic like, 'you need to forgive' or something like that - don't).

[Stephen]

I started a reply, but it got complex really quickly. You gave me a lot to think about. I'll be back to respond soon!

[Kim]

This is by no means a solution to this problem. I really have no idea what to tell you. The reason I am replying is to let you know that you are not alone in this. Hobo is in the same situation of abandonment. In the beginning his family and friends supported him. There was so many people at the hospital that the doctor was scared when he approached us. You could see it in his eyes. They came and built a ramp at the house. We was in the middle of major construction when Hobo got sick and they came after he was released and finished it up. Not long after that though, they started disappearing. He had one faithful friend that stayed for four years but then he too gave up. Now, no one comes or calls. It is very sad. I have told them several times how important thier precense is to Hobo with no success.

Do I think you should forgive and forget? No, I think that it is unforgiveable that when someone needs you, you bail. Should you move past it? Absolutely! How? That is a question I can't answer as we have not been able to move past the abondment issue yet. Just know that you are not alone. Encephaltis has changed our lives greatly as it has your life.

Hoboswife-Kim

[Daniel]

Hi Kim. This is obviously a consistent theme amongst survivors of either permanent or long term illness, the way others handle the sufferer. Can I first just say a thankyou to you for responding as you have, I very much think this is an issue which many on this site could offer whatever methods they've discovered to circumvent their isolation and reclaim meaning to life and, perhaps in some cases, a reason to get up in the morning.

I recall that my main reason for undertaking a 7 day/week gym routine was *not* out of a bold desire to be staunch or tough, but to instead take my mind off thinking about the situation I was then in. Same with my studies, same with many other facets of my day which originally deterred my swelling depression.

These things are now who I am and what I do. I have little time to worry about those people in my past because I'm too busy being self absorbed in getting around their absence.

In my opinion, this is the basis of why I chose to post this discussion : I think not allowing the way others leave a sufferer of brain injury to their own devices after an initial showing of compassion involves forming a strong and positive habit to take the mind off their absence. I feel I understand the concept you mention above of people initially being concerned and grouping around and promising this, that and the other about how they'll remain ever present, only to contradict themselves soon afterwards as it becomes, in my experience, evident that they were only ever trying to pat themselves on the back and look heroic and supportive, like we frequently see in the movies. To me, my former friends didn't account for earning anything or that my recovery would take years, not a very small amount of time, yet it is those like myself (the recoveree) who are essentially made to tolerate their miscalculations as they have the freedom to move on with their lives while we feel stationary, like our feet are cemented to the ground at the edge of some escalator of life which they queue up with you at, but essentially get on like everyone else and leave you behind waiting indefinately.

I got home from the gym at 12pm today, after arriving there at 9am. My point is that morning is now gone and I was too busy to get depressed. I'm about to have my lunch, take a half hour walk around the neighbourhood, study for a few hours, have tea, do more rehab this evening, perhaps come back online here, and write before bed.

This is not an attempt to display how motivated I might think I am, but to instead show that the best way I've found to ignore the temptation of getting down about the absence of people in my life is to get busy with whatever I can do : which is improve, surpass those losers and return to life at an undisclosed time in the future.

I'm under the impression you are the carer for someone hindered by this disease, rather than being in recovery yourself. If I'm wrong, then I apologize, but I think the thing which has undermined my progress...hindered, is perhaps a better word, has been emotion - fear, uncertainty, lacking self confidence, and so forth. Learning to remain busy in a tolerable fashion, I find, is the best emotional bandaid there is.

How long, would you say, it took for the people formerly in your lives to evaporate and disappear, if I may ask? Was it instantaneous or happen over a course of months? What made you realize they were gone the most? Was there anything they said or did, or was it just general evasiveness?

Great to hear from you.

[Kim]

You are right to assume that I am the carer of a encephalitis survivor. Hobo is my husband and had meningoencephalitis in 2002. You ask how long it took for people in our lives to disappear. The answer is not very dang long. Maybe, two weeks after Hobo was home, most of the support (friends and family) was gone. A few kept calling for a 3-4 months. One friend stayed faithfully for four years. He came by at least once a week but we have not seen him in over a year now.
What made me realize they was gone? Stress from handling everything by myself including two children and a full time job. Lonelyness from lack of social interaction. Hobo's anger and depresson. They are gone and that is all there is to it. It is my belief that they are scared of the changed man that they once knew or they just don't give a damn. I have not decided which it is.
I, on the other hand, am here to stay. He needs me and I need him and our vows mean something.
And yes, they made him the depressed, inactive, unsocial man he is now. It is my belief that had they not gave up on him that he would not be in the state of mind that he is in now.

Hoboswife-Kim

[Daniel]

Do you think it might also be due to their own perceptions of a future outcome? I mean, my own friendships kinda sagged and died over time, and I just got the impression they were expecting to see some kind of a miracle return to health, rather than the elongated slow crawl which has transpired. (ie like in a movie)

I don't know about your husband, but them more or less throwing their hands up and saying, "ah well, he's screwed, time to get on with our lives" - was an *incredibly* painful thing which actually made me more angry than I've ever been in my entire life - if I then had the health, I'd probably have attacked them.

Thankfully, now I do have the health, I'm over that resentment and narrowing on a semblance of a return to health. It's slowly creeping back and I feel it almost daily as something just seems less difficult than before. Getting close to something like health, in my experience, is actually not easy either to negotiate - it becomes addictive and you think, 'just one more week, month, year or so and I should be fine' - then you get to that point and it's still not fine, just less bad than it was, which is enough to make you think of the next fine and the one after that and that and....well, you get the idea.

People then began to encourage me to give up on full recovery and resign to what I then had. That was infuriating because, where I saw tangeable proof of improvment, they seemed only to see reasons to chuck in the towel.

I don't believe in chucking in the towel, but I do now believe there's a sort of credability to what others were suggesting - not stopping getting well, just incorporating new things into life to begin relearning normality again. That was hard to do because I felt so very abnormal with brain injury that I wanted to hide away and only resurface when I felt like anyone else does.

Unfortunately, it doesn't seem to work that way and it takes a long time to come to terms with losing enough of your own inhibitions to no longer care what others think, try new things, and progress faster - letting go of those former friends was an humungous hurdle - by default I think people either make fun of me or are belittling simply because trust and self confidence are two things which I'm yet to really regain and they have major, physical implications in terms of symptom presentation, as a result (eg dizziness due to heightened, nervousness related neurological blood circulation - hopefully you understand what I mean by that though, for your husbands sake, I absolutely hope not).

If I may ask, and I don't expect an answer to this, how effected by the virus is your husband still? What symptoms remain?

[Kim]

Seizures, static balance, short term memory, headaches, fatigue, diebeties, prostate problems, dizziness, right hand shakes almost all the time. Thats most of the symptoms he was left with.
Now that sounds like a lot but he has made incredible improvements since the beginning.

Hoboswife-Kim

[Daniel]

I don't know about seizures (not been a problem in my recovery), but fatigue and dizziness is something I've had a significant battle with throughout the course of my recovery. From what I've gathered, and you may or may not already know this, the dizziness and headaches are possibly the result of a nerve in the brain called the vestibular nerve, while also related to eye astigmatizm and general imbalance - I'm under the impression that this particular nerve is more or less responsible for imbalance/vertigo when damaged.

What things tend to trigger these attacks are simple things like walking through a narrow gap, down a sloped surface or through a tense situation (eg crossing a busy street) - all these things tend to challenge equilibrium or create a raised anxiety or tension, which equates to blood circulating to the brain in a manner which causes the dizziness and headaches resulting from the situation or possibly even just the emotional stress it may cause.

What can be done about that is not my right to impose upon you in a suggestive manner, but I will mention what I have done which has worked and helped my brain to adapt to being less nervous and, in doing so, genuinely improve over time. I used to get horribly and painfully dizzy an average 3 times/day in 2007 (2 years post infection) when I began to get outside and try busing to town and so forth, I'm now 286 days without a serious attack of dizziness or lightheadedness (perhaps a more apt term for this, I've been told the name of this is possibly 'presyncopal lightheadedness'), and only a handful of minor instances therein.

Does your husband do any physical rehabilitation? I ask, as, fitness not only helps the heart to circulate blood more efficiently to the brain, but also the actions done can help the brain to relearn how to move and perform physical tasks required of it, which can desensitize it to adverse reactions like dizziness, to the point where they may lessen in severity, regularity, or perhaps stop altogether (can't promise that, obviously).

I found that there are also a number of non prescription medications available which encourage efficient blood circulation within the body. I suggest you speak with a pharmacist/drug store attendant, and ask if they can recommend anything. This is also something which will not help overnight, but assist long term improvment in conjunction with ongoing rehabilitation.

There is also a freely available website offering eye muscular retraining exercises :

http://dizziness-and-balance.com/treatment/cawthorne.html

These are movements of the eyes which, assuming your husband has any double vision/astigmatizm issues, can help re strengthen the eye muscles and encourage efficient rehabilitation. If he chooses to try these, I cannot emphasize enough that care be taken to find if they can be tolerated to prevent any further damage being done. Doing these twice a day for the past 3 years has greatly helped me, though.

Memory is something I've also had a major struggle with - entire weeks used to go by and I didn't recall, then days, then hours, and now my memory is pretty much fine again. I've found doing things like sudoku puzzles (Japanese number game :

http://puzzlechoice.com/pc/sudoku_puzzlex.html

has freely printable ones)

or some other type of memory stimulating activity like wordfinds, crossword puzzles and so forth also all have helped my memory. I do also study something, but the fundamental point which seems apparent is that the brain is designed to learn how to better function so, if it suffers an injury which hinders the ability for it to function at a full capacity, it requires constant stimulation in order to relearn how to better function).

I'm not trying to preach anything to you, but the above has greatly helped me, and still does so. I certainly don't mean to suggest going from 0 to 100mph in recovery from now, more a slow and gradual introduction of new activity to encourage improved adaptation.

I hope some of this helps : I can only advocate it all as potentially useful as, without it (especially physical rehabilitation), I'd still be where I was a few years back : ie wheelchair bound or using crutches and getting dizzy at the drop of a hat.

Self confidence, and believing something is possible *not* by lying to yourself but instead empowering yourself with the knowledge that similar activity has been successfully achieved before, is an important aspect of improvment, I've found, though the diabetes is something which I know little about in terms of how it effects the ability to achieve any of these things.

Slow improvment is always best, not doing what my stupid behind did and jumping at it too intensely, too early.

One more thing I'll mention : brain fibres heal at about a mm/day by default so, if you or he ever get down about how much time has passed, consider how many brain fibres there are in the average skull (ie lots) and know that there is absolutely no cut off point for improvment, only potential for something to get better if encouraged to do so, and it sounds like your husband has an admirable attitude towards improving if you feel he's coming along quite well.

Advance apologies if I come across as being a knowall, it's not my intention.

[faith]

My two closest friends and my husband have stayed with me.
everyone else has vanished into the wilderness. as you know we recently made the 12hr drive (4kids, a baby two adults and a dog... crazy) down to visit my folks, and while we were there my mother told my daughter in front of me that i "use my so called brain damage as an excuse for my behaviour".... i was so stunned that i didnt even reply. i couldnt. firstly i didnt understand what behaviour she meant... i thought i was doing really well, and acting quite normally. and secondly the attack seemed to come out of nowhere...
personally, i would prefer those who cant be supportive to be in the wilderness and not around me... i have (as all survivors and caregivers do) enough to contend with just getting thru each day, without the ignorance and arrogance of others interferring with that... i dont need their crap in addition

i am so sorry for the pain and loss that we all expereince with this illness and its effects. If only those who lack the courage to stay could see the incredible strength in those who remain. hidden gems i say you are.

my recovery comes in waves, i feel like i am improving greatly.... until a negative comment or thoughtless throwaway line can have the capacity to totally wipe my confidence.... all i can say is thank god for survivors.

faith

[Daniel]

That utterly insensitive remark made by your own mother is something which I assume is more a reflection of a comment designed without any actual intent to seriously hurt you, but also lacking in any intelligence or forethought for what saying it might do either.

I've been on the receiving end of such comments - not from family, but from friends. We don't speak anymore because their attitudes drove my sense of self worth to a level I'd rather not discuss and resulted in my being a slightly selfish individual for a long time as I promised myself to get well with the sole intention of harming them.

That was as immature to think as they had been unsupportive when I needed them not to be. The ambition for revenge is gone, I'm pleased to say, but it completely undermined my self confidence for a long time, and also my ability to trust people.

I'm not suggesting the same reaction for you, I just hope that your mum becomes aware of how such treatment can be detrimental to anyone recovering from an intellectual illness. Conversely, I think having the guts and intestinal fortitude to be a parent, such as yourself, post brain injury is deserving of a medal. I just hope your mum begins giving you the respect you obviously deserve.

[Karen Stirling]

All that pain and hurt that you have shared will be processed with the JOY AND LOVE OF LIFE in new things. Hurting your emotions and disappointments will always happen in this PLASTIC WORLD and people don't all have the same emotions as you do after you E. I also have been disappointment in my spirit with friendships and have lost friends but have loved those left and accepted a smaller amount of GREAT friends and LOTS of acquaintances. They are the people that run away when something changes in your life. When I got retired from my career, I felt that isolation and anger and turned that into sharing my life with new people and treasuring the ones' left. Honesty is important, PEOPLE ARE HUMAN. I reached my relationship solidtude in having FAITH to get me thru the upward slope of life. That climb has been nurtured by loving what I have left of myself and sharing that person with people who loved me. WE ARE ALL HERE TOGETHER IN THIS WORLD TO UNITE IN LOVE. Love people in life that don't hurt you.

[Daniel]

Hi Karen, great to get a comment from you.

You obviously identify adaptation to change, coming to terms with a situation and so forth as being important aspects to moving past social segregation. I get that, and I appreciate what you say above, I do. Point is this : when you've been mentally altered by a virus of this nature along with also possible physical implications, I've certainly found just dealing with that and moving past it to actually be pretty much an exercise in submission (bear with me).

By this, I mean that those aspects of the unforgiveable way people who I formally appreciated have chosen to react, is actually a major part of why I still refuse to accept the after effects of this illness and, more importantly, do something about it. It is unacceptable to fear stepping off a bus because doing so causes a headache, that takes a wrecking ball to the self confidence (it used to be a major hurdle for me, that very task of stepping off a bus), and exascerbates tension, turning stress in an all out bad mood. This is compounded by others completely avoiding you and creating a need to manufacture a reason to go into town in the first place - it's necessary to do in order to overcome the problem of being underconfident and knowing that stepping off the bus is actually fine and dandy, but dictated to by a negative mindset, such as how the segregation of others towards yourself can create.

It's obviously all well and good to float cliched terminology like, 'we're all here together' and 'people are human' and whatever else - those are great virtues to follow and difficult not to concur with, but at the moment where a ritualistic point of stress is encountered, like stepping off a bus and nearly fainting can sometimes be, or approaching a shop clerk to buy something and stuttering horribly due to associated nervousness, there's no rule you can tell yourself which is going to absolutely suppress such negative reactions, only previous experience of doing something well and doing it right.

Stepping off the bus is a physical activity condusive to creating presyncopal lightheadedness. This symptom is born of nervousness and poor blood circulation. Therefore, being more self confident is the answer. The only way to get used to this action is by simulating it as well as you possibly can and by getting the body used to the anticipation of moments such as this one on the bus - I rigidly rehab at the gym and now stepping off buses is fine.

Therefore, social rehab should be the same, right? Practicing speaking with others using a non direct interactive medium like this website, should yield a certain amount of desensitization to social apprehension, should it not? I believe so, and I feel less nervous around others as a result of both the gym and this site, hence why I come online here often.

There is no mantra for self confidence. A good mindset is useful, but it's only a bandaid for actual, tangeable experience - simulate a solution to the problems by physically going out and doing something about it, is what I should add to your suggestion of personal self reassurance - the latter alone will not solve the problem, I find.

[Daniel]

Just in addition to the above :

* I was apprehensive about being able to convince an employer about being worthy of being in a paid job, so I volunteered for 9 months and now I feel more convinced and confident.

* I was nervous each time before I left the house for this voluntary job because of dizziness, so I went to the gym and reversed it in doing so, along with helpful medications, and in an ongoing capacity, for the past 3 years. I now have more confidence in my physical abilities from that and turning up to the voluntary job became no problem for having done that.

* I was nervous about buying groceries or music or whatever else, so I came onto this site and bombarded it with chatter and replies to discussions posted by others, posting my own when things were slow : I no longer feel apprehensive about physically speaking because I can communicate here without meticulous planning of responses - that's improved my confidence when away from the computer.

* The only thing which has been hard has been making new friends away from the computer - that's hard to simulate to any satisfactory degree.