ENCEPHALITIS CASES

Encephalitis Cases

Elena

My name is Elena. I was 14 years old when I contracted Equine Eastern Encephalitis in September of 1974 in Selkirk, New York, USA.

My recollection may not be terribly consistent, but here is how I remember things. I was the youngest of 5 children, had a horse and lived in rural New York with just my parents. It started with headaches, becoming more and more severe. My parents, having already raised 4 children, figured they were only temporary, but were keeping an 'eye' on me. The headaches become so severe that I would lie in my bed with ice packs on my neck. My parents still waited and watched thinking perhaps I had the flu. I slept a lot also and was becoming progressively irritable. Of course my parents figured I had the 'typical 14 year old attitude', but by that time took me to the doctor. The doctor gave me codeine for my headaches.

I remember being placed in isolation in Albany Medical Center. I was violent by then, screaming, throwing things, cursing words I normally would not say, (around adults anyway). They did a spinal tap. I don't remember anyone talking me into it, but my father said that they contaminated the first one, and because I was so violent and objectionable that, "he talked me into the first one, they would have to talk me into another one". I was diagnosed with EEE, and my parents were told that I had a chance of not making it because the swelling around my brain was severe.

I don't remember how long I was in the hospital. On my school transcripts it says I missed 38 days of school that year. I remember being home and being terribly violent. My mother told me that the doctor said to be patient with me because it was an effect of the EEE. They said I had 'temporary' brain damage and that I would have to have an EEG every 6 weeks. I remember only two of them. My childhood memories were all but gone. I had difficulty speaking to the point where, as I got older, I lost a great deal of confidence and stopped speaking unless I had to. I felt like a freak in school, everyone said I was crazy. I slept a lot in and out. I was married at 18 and had my daughter at 19. At 23 I was divorced (because of my violent temper), among other things. I finally went to psychotherapy. Four years later, I was taking antidepressants and dealing with some of my problems. I learned to control my temper somewhat, and had to concentrate on one thing at a time. I took control of my speech by talking very slowly and enunciating my words very carefully. Eventually I could at least carry on a decent conversation without feeling as though people were putting an effort into trying to listen to me.

I am now 43 years old with a grown daughter. I've been married to my second husband for 15 years. It has not been easy. Every day is a battle to get up and do something. Some days feel 'normal' some feel totally 'unreal'. It's funny how you learn to make excuses every day for your problems and behavior. If it weren't for this site, it would never had occurred to me that some of the things I deal with are manifested from the encephalitis. I'm super sensitive to loud noises, and being startled is a giant fear. I'm also very sensitive to light and get headaches often. Oddly though, I rarely have to deal with the common cold or flu. I can't even remember when I last had one. I've finally gotten the confidence to start college this year and am currently working on that. I would be glad to hear from anyone that wished to write.

Thanks for this site. I don't feel so 'alone' anymore.

Elena
New York, U.S.A.

Posted: August 17, 2002

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