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| Jennifer |
 I was 36 years old in 1981 when I
caught chickenpox from children at the school where I was teaching kindergarten. The chickenpox itself was severe and I was hospitalized
for several days. It became infected and was an oozing mess from head to toe and was quite painful. As I recovered, my 3 children, all
young adolescents, caught it one by one every two weeks.
I went back to work but began feeling strange and then stayed home for about a month. My memory of that time is hazy. My exhusband took
the kids. I remember sleeping outside in the garden most of the days. I called my doctor but was told that he was on vacation and was
so confused that I didn't think to go to the HMO and see another doctor. As a result I had no medical care during the acute period of
the encephalitis. But the modern antiviral drugs had not been discovered yet anyway. And from what I've read of the other stories here,
with the horrible misdiagnoses and bad treatment, maybe it was just as well!
As I recovered I began doing strange things like putting the milk in the cupboard and the dirty dishes in the refrigerator, or mixing
up my kids' names. Then I went back to work but I was exhausted and still confused. I finally saw my doctor, who happened to be the infectious
disease specialist of that hospital/clinic. He took a spinal tap and said since it was negative there was nothing wrong! Later, after
a diagnosis was made by a neurologist, I researched encephalitis at the UCLA BioMedical Library and found that a negative spinal tap does
not rule out the disease. Of course I changed doctors.
After several months a friend of mine who is a nurse said that something was wrong, the doctor was mistaken, and I must see a neurolgist.
So I did and 4 months after onset it was finally diagnosed. But of course they could do nothing, back then they didn't even offer rehab
of any kind. The CAT scans were negative, and it wasn't until the MRI was invented several years later that my brain damage was revealed.
Here's what I was left with:
Constant pain, a low level headache 24/7 since January 1981. There were years of intermittant blinding headaches, too, but they stopped
when I was given a drug called atenolol for a heart condition several years ago. There were times when I banged my head on the wall as
some of you have reported, the pain was so bad. Oddly enough the neurologist said the headaches were not caused by the encephalitis but
this was contradicted by a neurolgist in a Caribbean country where the disease is more common.
Fatigue. I must take a nap every day after lunch. If the nap happens late, say after 4:00, then I can't function the rest of the evening.
Loss of balance. Instead of being a graceful young woman I was clumsy.I gave away all my high heels.When I walked in an unfamiliar place
I had to be very careful or I would stumble. People who saw me walk when I was tired assumed I was drunk, when I actually don't drink
at all.
Ability to handle stress much diminished.
I can't understand mathematics past about the first grade level. I can do it with a calculator but can't explain it. This isn't good when
you're an elementary school teacher!
Speech problems. I use antonyms frequently, or say the opposite of what I mean. If I want to say "hot" I'll say "cold" instead, etc. And
I lose words, much as a much older person would do. Even my grandson began supplying me with words when he was about four years old! But
my Spanish, which I learned later, was not affected. Your native language is in one part of the brain, and later languages in another.
The virus damaged the English part but not the Spanish.
Memory loss, both long and short term. I've learned to keep a calendar book and to write down absolutely everything in it that I should
do. Parts of the past, whether important or not, are gone forever, as well as parts of yesterday or today.
Cognitive loss. I have a hard time with abstract concepts. It's even hard to follow plots of mystery films. We watch them on tape so I
can pause them and ask my husband what's happening!
I can no longer visualize things. I must see directions, plans, machines, etc either in person or written down, because I can't "see"
anything in my head. The therapist who helped me cope with all this early on was surprised when I couldn't see any pattern to a Rorshach
test; he said only psychotic patients did that!
There were many difficult years, with a workers' comp court case and struggling to keep working. Finally I had to get a disabilty retirement
after 10 years. Now I work one day a week teaching parenting skills to young parents. The financial loss over the last 15 years is steep,
but the work is enjoyable and it's all I can do. I do a lot of community work but on my own schedule so that I can always take that nap!
Oddly enough this experience was valuable in that when I was diagnosed with breast cancer 1 1/2 years ago I already knew how to cope with
a devastating disease!
Here's something I want to recommend to everyone. I started tai chi classes 1 year ago, to reduce stress and improve my immune system.
And it has done that, I feel much more relaxed now. But it had the added benefit of improving my balance tremendously! I'm no longer clumsy
or have to touch a wall to walk down a long corridor. I think tai chi can help people with any sort of brain damage.
It's amazing to read people's stories. I've only met one other person who had encephalitis during all these years, and the condition is
so rare here that there are no support groups. It's been lonely up till now. Thank you to everyone who has written in. If anyone wants
to email me that's fine.
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Jennifer
California, U.S.A.
Posted: May 3, 2003 |
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