Long-Term Encephalitis Survivor

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)

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6 replies. Join the discussion

Hi Jane,

My name is Sherry and I had HSE (herpes simplex encephalitis) in 1977 at the age of 11 years old. I am a long-term survivor of 30 years. I basically grew up with the residuals of post E. As a child/teenager I didn't and couldn't comprehend what had happened to me fully and it was a hard time for me to learn to adjust and eventually accept a new version of myself.

Like you since so many years have gone by I could go on and on but to cut it shorter there were many high moutains I climbed and many deep valleys that I had to go through. I was very fortunate as I retained my cognitive abilities and was left with a few neuro problems that are lifelong.

Today I am married and work full-time. I was previously on SSI but that was taken away when I got married. If I didn't get married they said I would still get SSI --- nice system, eh?

Feel free to ask me any questions you may have. It is nice to meet you.

Sherry

1977/HSE Survivor

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I was an adult when I came down with my HSE, but it was only a few years ago. I'm not really sure how many years ago, but not more than 3 years ago. I am 32 now and I have a long story even though it's no where near as far back as yours. I'm really glad you survived and are here to help those of us that are recent. Thank you very much.

Michelle.

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Hi Jane

My sister is the survivor of E as a toddler. When Carol met Wendy, Ingrid and Sherry, Tish and Stephen it helped to cope and understand her disability. It only took Carol 50+ years to meet other survivors. What a difference meeting survivors has done for her and me

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The photo at the top of the website is Debe behind Carol in the wheelchair, Sherry, Wendy and me. Our meeting was in Nashville (this is where last year's meeting was going to be) and we had a great time; just a few survivors and some caregivers hanging out all day/night and laughing at ourselves!

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Thank you for your reply. It also has ment a lot to me to "meet" all of you through this "web-site" although it's taken me a long, long time to "learn" how to use the internet (since it did not exist when I finally recovered enough to "communicate" -- somewhere between 1983-1986 -- at least not in "wide use").
Luckily, even though I "lost" at least 7yrs of memory (mostly from approx. mid 1973 through 1979-80), I'm able to "remember" college but find it "difficult" to learn "new things" and remember them --- therefore, unfortunately I tend to "repeat myself" a lot.
I'm thankfull that most of you "here on this site" have been patient with my "ramblings" and it's been a real
"eye-opener" to see that a lot of my "difficulties" with "day-to-day" interactions with others are "shared" by many of you.
I only wish that the "general public" and especially "medical professionals" (referring to doctors and medicare/social security beaurocrats) learn to be more "patient" with us to "help" us have the best "quality of life" possible. Just "surviving" , though (especially in cases "like mine where I was comatose and hospitalized for most of the first 2 to 2 1/2yrs after I became ill) miraculous loses it's "value" if "continuing" to live has too many "roadblocks" due to the "ignorance and predujice" shown to "disabled" individuals by the very people whose "job" is to "assist" us.
Since so many years have passed since my "difficult" recovery, life has become more "meaningfull" but it's been a long, long road that I DO NOT WANT OTHERS to have to experience. Hopefully, we can "join forces" to make those future "E" survivors have an "easier" recovery ------ educating the "general public" as well as "health care professionals" that there are MANY, MANY more of us alive and "functional" .
I'd like to make things "easier" for "future" survivors (espescially after West Nile, I think that encephalitis will get "more attention" in the media).
What are your thoughts on this issue ???

Thanks for your "interest" in my "story" and your time ---- I wish you all the best !!!

Peace & Love, Jane

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Thanks for your "photo description". It must have been "wonderful" to meet "face to face" and speak to each other all in the same place.
As much as I love Denver, CO -- I do feel isolated here but think of "Mother Nature" as my "constant companion" and source of comfort, inspiration and companionship. Although I grew up in NYC, I only "miss" all the "culture there" (symphony, Broadway shows, the "vitality" of "the city that never sleeps" etc.) but here I LOVE the mountains and the "closeness" to nature (seeing all the stars at night is always a wondrous site).
Do any of you know of any E survivors in this area ?
So far, even through my "connection" with the Brain Association of Colorado, I've only met car accident or stroke survivors over the past 6-8yrs.
Hopefully, I'll meet "E"survivors sometime in the future.
Good Luck to all of you. Spring has just come and with it all the "beauty" of "new life" around us.
Peace & Love, Jane

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