I had HSV encephalitis 29yrs ago. Unitil recently I have never had ANY contact with other long-term survivors. Initially (at the age of 26 in 1978) , after I "woke up" from a coma (then was still "semi-conscious" & "unaware" not able to communicate from Oct.1978 til Jan.1979), I did not "know who I was" and lost 6-8yrs of memory (before the illness) and I was given a "poor prognosis" -- not expected to live past the age of 30. I think that's why after I was put on disability back in 1979, I was given NO REHAB.
Never-the-less, here I am---- still alive at 56.
I did a lot of my own rehab (either giving myself up as a "research subject" to "get help", or for "physical rehab"-- since back then, I was partially paralized, I worked out with Campbell's soup cans alone at night, talked to the T.V. to be able to "speak normally" etc.).
After I survived past 30yrs old (in 1982), I was given a "disability review " by the Social Security Disability people (consisting of a 45minute neurology exam & a 45minute "psychological evaluation") at which time I was considered "able to work" and was abruptly "taken off disability". Unfortunately, I was not aware of how the "system" worked and managed to "perform well" for the S.S.I. evaluators even though my brain had not really "healed", and I was just trying to "prove" I could "look & act normally" when in "reality", my brain was still "scrambled eggs" .
Afterward, I tried to get a job and after being "fired" from 2 "minimum wage" simple jobs (one was in a restaurant kitchen & the other was just filing index cards in a library).
I had 2 college degrees plus a year in graduate school but because of the "brain damage" from the illness & the "sedatative effect" of the seizure control meds I was taking at the time, I could not "function' in "so-called main-stream jobs" because I had "cognitive problems" and was "not aware" of the fact that I would "think one thing" but when I tried to "express it , that same thought is NOT what I said" plus I was suffering MAJOR depression problems & could not control my emotions. After O.D.ing on my RX's many times (I kept thinking that if I took enough Phenobarb, I would just sleep for a few days and "wake up my old-self). It was like living a "real-life nightmare" all the time. Luckily, in 1983----I wound up living in southern Illinois, U.S. in a college town (the home of Southern Illinois University, Carbondale) that had a large medical school with a "new neuropsychology program" where I became the "subject" of a woman's P.H.D. project, where I was in "therapy sessions" with her 3 times a week for almost a year to "rebuild my personality". The best analogy I can use it that it was like my brain was a "Mal-functioning computer system" that needed to have "its software fixed".
After my "personality re-building", I finally realized that I was trying to "find the old Jane" that I was before my illness and had lost so much memory that I had become "different".
It's been many years since then, so I can "look at it" more objectively to see that I'm "part the old Jane, and part a new Jane" but I feel lucky that I retained the knowledge I gained during my "formative years" through high school and college but that my memory sort of became "fragmented" somewhere around the time I received my 2 undergraduate degrees, got married etc (basically, I "lost" most of my 20's --- from somewhere around the age of 21 to the middle of my "recovery time" from the encephalitis around 28-29yrs of age) . Unfortunately, during that time I got married, my marriage then disintegrated plus I had moved at least 5-7times, living in at least 6 different towns and cities in at least 4-5 different states in the U.S. ------ Now, since many years have gone by, I can look back and wonder in amazement as to how I managed to survive, yet I DID make It & it's been a "wild ride". I consider myself "lucky to be alive" and see every day as a "precious gift".
I know this seems to be a "long, long story" but believe it or not it's only an "abrieviated version" of what I've been through over the past 29yrs.
I'm pleased to see that there's been much "progress" since then in the treatment of "neurological disorders" and "brain viruses" but UNFORTUNATELY there's is still TOO MUCH IGNORANCE and not enough AWARENESS regarding what's referred now as "organic brain disorders" --------- INVISIBLE DISABITITIES !!! --- just as debilitating as those that require a wheelchair, a guide dog etc.
I've been lucky enough to be able to work full-time from 1985-89 through 2003 when the "damage" from my illness "caught up with me" and I had to go back on disability (at least it was "easily recognizable" legally) but I still hear all too often the phrase "but you don't LOOK DISABLED, why aren't you working" or words similiar.
I've unfortunately go out less and less --- plus have fewer and fewer friends these days --- yet, I don't mind because I am more "at peace" with who I am. I'm very THANKFUL that I finally got someone to help me learn to use the computer so I could access the internet and "discover" that there are "other survivors" like myself "out there".
I'd like to hear your "survival stories", especially people who had HSV encephalitis or a similar "brain virus" who have survived over 15yrs (who became ill as adults). So far, through "encephalitis global" it's been "enlightening" for me!!!
Peace & Love, Jane (it's been a long journey)