ENCEPHALITIS CASES

Encephalitis Cases

Ingrid

I wonder sometimes how, if encephalitis has affected my memory so much, I can remember the day I first started feeling like something was really wrong with me and what it was like waiting in the waiting room at my local hospital. That was on December 18th, 1995.

My husband George and I live in Tarrytown, NY which is about 25 miles north of NYC. We had just returned from a week's vacation in Miami Beach, Florida. A few days before December 18th, I had an awful headache so I went home from work early. I thought I was getting the flu.

When I got home I really didn't have much of an appetite but I ate a little and then told George I was going to bed. I think it was around 7:00 p.m. I called in sick the next day and never got out of bed. When George came home from work, he was taken aback and thought it would be good for me to get up. Well, my eyes were crossing (which scared me but I didn't say anything); I felt like I had a fever but didn't check to see what it was; and then, the scariest thing to happen to me was not being able to speak. I smoke cigarettes (no lectures, please) and told George that before I went to bed again I was going to have "a mustard". He had no idea what I was talking about and that was when he realized something was really, really wrong. I forgot to mention, we were in the middle of a snowstorm.

The next day I realized I had to go to the hospital so I waited for George to come back in after shoveling the car out so we could go to the emergency room. The nurses, then the doctors took my temperature, had me walk back and forth, do circles, etc. At first they thought I had a stroke because of the way I was speaking but I didn't have any limp or weakness and my fever was up to 105. They didn't know what to do so they contacted my doctor. She had no idea what was wrong with me, but whatever it was, it was serious enough so she then gave approval for a neurologist to check me out.

Dr. Rothman has to be the best doctor I have ever known! One of his partners (another neurologist) had died from encephalitis a few years prior to Dr. Rothman seeing me. I had a spinal tap, an EKG, an EEG and an MRI. My fever was still over 105 degrees and I really couldn't talk. I could answer yes and no questions by shaking my head. They admitted me, sent me to ICU, hooked me up to IV's with penicillin, acyclovir (the doc figured if it wasn't an infection, it was something that acyclovir could help) and packed me on ice (which I hated; I do not deal well with being cold; I have something called Raynaud's Disease).

I know I came as close as you can to dying without really dying. I saw my mother and her sister, both of whom had died years before, waiting for me to enter a tunnel with them. My mother looked like she was in her early 40s (her peak), and my aunt, who was a polio victim and spent her entire adult life in a wheelchair, was standing 5'9" tall and looking great. She kept saying "Come on Ingrid, don't you want to come?" Then she'd say to my mother, "Come on Marianne, I can't wait forever. I'm leaving now." With that my mother looked at me with a big questioning look on her face and asked if I were coming. I remember saying, "Not this time, mom, I have to tell George I love him." After that, the days just kind of went on. I was in the hospital for Christmas and New Year's Eve. I got home on January 2nd, George went to work and I welcomed another snowstorm (what a year 1996 was!).

I went back to work part-time at the end of March 1996 (3 half days a week for about 2 months; 3 full days for all of the summer; and then full time after Labor Day). I have been fortunate not to have had any seizures. I am sure I am over the worst of it. I may not get any better than I am and hopefully, I won't get any worse. Needless to say, I don't think I'll ever be going to Florida again. Should I get this illness again, I hope I don't make it.

I came down with encephalitis in 1995, now years later, I never thought I'd say this but, I feel like I'm starting to function "almost" normally and I have a lot of new friends who know exactly what I've gone through!!! I found the encephalitis support group on the internet; now I am running an Encephalitis listserve Encephgroup! We all have had different levels of this disease but we have all had the same disease and know what each other is going through. I feel so lucky to have a job where I am allowed access to the internet (which is how I found the group and because of the group and the amount of e-mails, I now have a computer at home). How many of us are there who do not have any access to any computer?

I may have some residual disabilities but since I came so close to dying, and spent so much time looking at only the negatives, I have now tried to focus on the positive aspects of life. It's working! I have kept my sense of humor and instead of getting upset when I forget something or do something wrong (such as crossing Fifth Avenue in NYC when the traffic had a green light) I look at it with tongue-in-cheek sense of humor. Anyone who has not had encephalitis will not know what we've gone through but, WE know what each other is going through or has gone through. And, shock of all shocks, I'm beginning to enjoy life!!!

Thank you Daniel for starting the Encephalitis Cases web site and thank you all for reading my story.

Ingrid
Tarrytown, N.Y. U.S.A.

Posted: Dec. 17 ,2000

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