ENCEPHALITIS CASES

Encephalitis Cases

Jane

My Name is Jane Labie. I had was diagnosed with H.S.V. Encephalitis when I was admitted to the hospital (for the first time) on Oct. 15, 1978. I was 26 years old at the time and was living in northern New Jersey, U.S.A. I now live in Denver, CO, U.S.A. as of 2009 I'm 56 yrs old. I consider it amazing that I've made it this long.

I do not remember initially "getting sick" because I lost my memory. I don't remember anything from approximately the middle of 1973 through the beginning in 1979. My first memory was "waking up" in Jan. 1979 with a doctor's face approximately 6" from mine asking me questions. I found out later that I had been in a coma for a week to 10 days initially, then "not aware" but off life support until Jan. of 1979. I was told that 9 other people (age 6-67 years) had become ill in northern New Jersey the same time that I did but that all of them had died.

I had been in isolation for the first 7-10 days until I was taken off complete life support and was expected to die at that time. They even told me I was "brain dead" for 4 minutes, but my "body" woke up. I was totally incoherent and was not aware of anything around me until that first "question" session with the doctor in 1979. I barely knew who I was, I had to "re-learn" how to eat, talk, walk. I was partially paralyzed on my whole left side and dealing with "day to day" tasks. Unfortunately, I had an allergic reaction to dilantin as well as tegretol and had 20 or more "grand-mal" seizures a week until the doctors found a way to control my seizures with medication, which only added to my confusion. With every "group" of seizures, I would forget what I had learned & had to go back to square one. I did not receive ANY rehabilitation. I discovered later, this was due to the fact that my prognosis was so poor - they had "predicted" I would not live past 30 years of age. I also had no medical insurance when I first became ill. At the time I was married, and my husband worked for my father. A very volatile person who had "fired" the insurance company he had for his company when he got "mad" at the agent. It only interrupted everyone's insurance for one week, but that was the week I first was admitted to the hospital. It's been a long road for me. I had to find ways to do "my own rehab" - became estranged from all my friends and family who were afraid of me because they did not understand why once I "looked normal", I was not the same person that I was before my illness.

I had to become separated then divorced from my first husband. It was a "dark" time for me but I came out of it eventually understanding that I would never be the person I remember from college but slowly learned to like the person I had become. It has given me a greater appreciation of life and I treasure each day as a "precious gift." There has to be a reason I lived when the others who were ill did not. Therefore my goal in life has be to help others and make "the general public" more aware of "invisible disabilities." I spent many years making myself physically look "O. K." or "normal". I soon realized that my brain works differently than so called normal people and that it doesn't make me any less of a person or inferior. All "survivors" need to know that we're "O. K." and that once there's more information out in the media regarding encephalitis and other organic brain disorders, we'll be more "accepted" among the so called "normal" population. Diversity is the "spice of life" so LIVE LIFE TO THE FULLIST. I think we can all demonstrate what the "best" of humanity can be.

Think of life as a continual challenge. The longer we live the more we'll teach the medical establishment that it's O.K. to say "we don't know."

Love & Peace to you all.

Jane
Colorado, U.S.A.

Posted: March 4, 2008

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