Encephalitis Cases

Kandee My name is Kandee. I am 52 years old. I was 33 when I contracted viral encephalitis, and six weeks pregnant with my 3rd child. My husband and I and our two older children, ages 9 and 12 were temporarily living in Vienna, Austria. I became ill during the Easter holiday of 1981. Many people had left the city for the holiday, including my obgyn. As my condition worsened during the week my husband called the small private womens hospital where the doctor practiced. I was told that my illness required better medical testing than they could provide and I was referred to the AKH, "the largest & most progressive hospital in Western Europe." As a graduate student in Womens' Studies I was well aware that Freud and Socialized Medicine were not a good combination. Bottom line: I was deathly afraid of Austrian medical facilities. My husband told me that he had been promised I would only get biological testing at the facility. He never thought they would be so bold as to lie to him. I was immediately put into a mental ward, locked in a room, and told that I needed to "dry out." Being from California they thought I was on drugs and trying to kill my baby. My husband was frantic. Vienna had policemen with machine guns posted all over the city, including the entrances to hospitals. The doctors told my husband that he could not check me out, they had to release me. Even my doctor could not get me released. I continued to have seizures (similar to many of you). I could see only shadows, could not stand and could barely talk. I was never given a simple blood test. Over the next 2 weeks I slipped in and out of consciousness, crying when conscious due to the intense head pain. Troups of doctors and interns paraded through my room with clipboards in hand, several psychiatrists interviewed me (in English) and proceeded to verbally abuse me, a neurologist ordered me to stand, walk etc. When I collapsed on the floor he became irate and "ordered" me to stand and walk, it didn't happen. I tried to "crawl" out of the hospital only to be dragged back to my room and locked in. My husband feared I would somehow try to escape out the window thinking I was on the ground level, in fact I was on the 4th floor. I was finally given a blood test, it showed a virus. Of course they had to be sure, so at least a dozen more blood tests were taken (The doctors in California were horrified at my black and blue arms). They then took several EEG's, with equipment my neurologist insists came from the Smithsonian. They finally admitted I had a virus and would "allow" me to go to Stanford University for further testing. The neurologist in California told me I was lucky to be alive, it was too late for medication. He suggested I go home and see how far I could recover. My husband was left with an enormous task, 2 pre-teenagers and a pregnant wife in addition to his daily job. He dressed and fed me in the morning and put me in the living room where I stayed until he arrived home at night. My children tried to converse with me. I saw their mouths move but I had no idea what they had said until 2 or 3 days later when my brain processed the words. I could think but not communicate. My brain did as it chose and I could not "will" myself to perform any task. Like many of the survivors I could not tolerate noise or light and needed to sleep around the clock for many months. Recovery is like watching grass grow and simple tasks become a triumph. Here is an example. At some point I became aware of things around me - like fog lifting, and the bubble evaporated. I began to notice objects. I became fixated on the can opener and refrigerator. I knew that I had used these in the past but did not know what I had used them for. As weeks passed I remembered I used to cook. I could not remember recipes and soon found out I could not read, it was odd seeing the words jump around on the pages of the cookbook. I desperately wanted to be useful. Everyday I pushed myself to remember, to walk, to hear, to control my mind and body. At some point progress kicked in. One day I remembered that can openers open cans, the next week I took a can out of the cupboard and placed it by the can opener. I did this every day for about 2 weeks. Finally I remembered how to open the can - triumph! TO MY "SURVIVOR FRIENDS" Be good to yourself, enjoy the things that you can do, accept what you cannot do. Try and laugh at your mistakes (you will make lots of these so there is a lot of potential for laughter), and never give up! Those baby steps add up eventually. I Wish that in the future: Neurologists would help patients seek appropriate treatment for their illness. Many of us have suffered from mis-diagnosis. We need to be told that we might "potentially" lose motor skills, emotional control etc. We need to know that we are lucky to be alive and that we are "victims" of a terrible illness. We need to be aware that progress is like watching grass grow, recovery may take place gradually over the years. Others need to know that we get frightened & intimidated when we are pushed to socialize sooner than our body/mind will allow. Loved ones are important, just to sit quietly beside us holding our hand is empowering. They need to watch for signs of disorientation. Others need to tell us if they recognize coordination or speech problems. We may be able to make slight modifications which will benefit ourselves and those around us. My state today: Headaches are constant and severe. I wear hats all the time, my head cannot tolerate bright sunlight. My eyes are sensitive to light, I use sunglasses inside and out. I cannot be in a room with a rotating fan or rotating lights. I am uncoordinated and need to watch where I am walking etc. I swim every day, it has helped. I am learning golf! I think faster than I speak and often leave words out of sentences. I become emotional when I am very tired or stressed. No short term memory. I can't remember appointments etc. I can no longer play piano concertos or accompany other musicians. I am a real estate appraiser and enjoy working. I never finished my masters thesis. The university refused to grant me extra time even though I explained my illness. My family is encouraging me to try for reinstatement. Just maybe ....... PS. November 1981, our baby boy was born - healthy. He enters UCLA this fall (2000) as a freshman. My husband is still a "mother hen". He grasps me tightly as we walk to ensure I don't trip, watches out for me, and laughs with me at my language mistakes etc. Kandee California, U.S.A. Posted: September 6, 2000