ENCEPHALITIS CASES

Encephalitis Cases

Kathleen

My name is Kathleen, and I had encephalitis. I live in Rhode Island. I got the E virus in 1999, when I was 18. I was attending a school-sponsored concert when it all began. It was a Friday night, and my friends and I were all excited about a Mighty Mighty Bostones concert that my school was having. During the concert we were dancing and having a good time, until the crowd started to get more violent. After being thrown into the mosh pit, I was trying to make my way out, when someone who was crowd surfing fell on my head. At the time I only had a slight headache, so I thought nothing of it. After that night, I only have fuzzy memories.

The week after my hit on the head, I remember being really sick, like I had the flu. The only thing that I can clearly remember was the day that truly set the ball rolling with my illness. My friend from home was coming to visit me, for a few days before Easter break started. I remember going to the train station to pick her up, but I remember acting differently than I normally would. I can't describe how, but I could sense a change. My friend and I went to my boyfriend's lacrosse game, where I would meet his parents and go out to eat afterward.

As the game went on, things started to get blurred, my hearing was going, and I was still thirsty. To my amazement, my friend commented on how I was acting different. After the game, my friend stayed at school, while I went to eat with my boyfriend. I didn't talk the entire time we were at the restaurant. All I did was drink and drink. Everything around me was getting more blurry than before, and I was beginning to feel light headed. Everything went black and the last thing I heard was a shout of " she's having a seizure!" When I opened my eyes, I was in the back of an ambulance, not knowing what had happened. At the hospital I don't remember my friends being there, only the screams of a man somewhere in the ER.

After being released from the hospital, I went back to school. There was only three days left until break, so I thought that I could live through it. But my friends called my Dad and he came to pick me up the next day. That I can remember, I didn't say a thing that whole 2 hours home. That would be my last memory, for almost five months.

Although I could communicate with others, there was a switch inside that was turned off, because I have no remembrance of almost half a year. Anything that I know about my time in the hospital, in a coma, I know through my parents and relatives that came to see me. I can't say when I woke up from the coma. Because there was a period of time that I was functioning, but I can't recall that time.

The middle of August was the first that I remember. I hated myself so much. My hair was greasy and uneven, from the brain biopsy. I had a scar on my throat, and still had to be fed with a feeding tube. So many things had happened while I was "gone", I couldn't recognize my own family, and worst of all, I had to start everything all over again. It was like being reborn into an adult. I had to learn how to talk, write, walk, eat, bath, I couldn't even remember how to tie my shoes. I would get so frustrated because I had turned 19, but acted like a 5 year old. Learning simple math, like adding and subtracting was especially hard! Even though I was studying Statistics before I got sick, basic math was virtually impossible for me.

I was released from the hospital, five months after I was first admitted. At home things weren't any easier. I had to be watched 24 hours a day and could never be left alone. I was taking Dilantin, Paxil, and another drug. I couldn't drive, and worst off I couldn't go back to school. It was more difficult to watch my friends all move on with their lives, and live like I wanted to, than it was to relearn everything.

I have lost so many friends that I went to school with. But the person that I lost that I miss the most, is my old self. Being sick changed my life entirely. Even though I have started school again and am getting back to health, there is something that is missing, that will always be missing. Not just the things that I missed while in a coma, but also the person that I once was.

Kathleen
Rhode Island, U.S.A.

Posted: January 14, 2001

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