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My name is Kandee. I am 60 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 referred to the AKH, "the
largest & most progressive hospital in Western Europe."
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." 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. 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, 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.
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. 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, and never
give up! Those baby steps add up eventually.
My state today:
- Headaches are constant and severe.
- 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.
- 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 others.
- I am a real estate appraiser and enjoy working.
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
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