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| Debra |
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I was barely 4 yrs old (Feb. 1964) when I got encephalitis.
I was living in Fresno CA. The memories are vague. I had the mumps. I remember,
vividly, getting a spinal tap in the hallway of St Agnes hospital, since they
didn't have room anywhere else to do it. They thought I had meningitis. I was
screaming in pain and for them to get the needle out of me. When I was admitted
to the hospital, they put me in a crib with a net over it. The boy in the other
bed had a "real" bed and no netting. I was upset at being treated like a baby.
They turned on a console TV with my favorite program just coming on, Superman.
I fell asleep right after the "It's a bird! No! It's a plane! No...zzzzzzzzz.
I woke up once. I saw my mom in a window near the ceiling, showing me a Jetson's
coloring book and the new Barbie with the inter-changeable wigs. I got the coloring
book and crayons. They burned those when I left the hospital. Probably why I didn't
get the Barbie at the time. I was mad they burned my coloring book, since
I never colored in it. That is all I remember of the illness.
My memories of my childhood are vague. I didn't retain too much of those. A reader
though, I read all of the time. I loved it then and still do. In 1982, I started
going to doctors to see why I was always so tired, among other things. It was
attributed to being a new mother and being "female". I spent the last 18 years
dealing with long and short term memory loss, fatigue, insomnia, trouble with
concentrating, remembering what word to use, and then saying it "wrong", very
sensitive to light and loud noises, no motivation, losing my balance easily. A
vampire drinks less blood than I gave during those years. Grin.
The dr's have the info that I had encephalitis as a child, but never correlated the troubles I'm having now with that. I still haven't talked with them
about what I have found out on my own. What good would it do anyway? There is no fixing it. I don't care for drugs, since I react strongly to most
anyway and avoid them whenever possible. Weirdly, my mom met an "expert" on encephalitis during a coffee break while she was doing the computer system
at a hospital. He said I was one of 30 survivors in the US for that particular form of the disease.
I can't hold a regular job. I need to be able to rest when I'm going through what
I call a "bad period" or it gets worse and I can't function well for days or weeks.
I make pottery/sculpture and sell it once a year at a local Renaissance Faire. Sell
some on the net. I can't handle more than that. I knit, spin and just learning to
weave. My teacher/friend has made me work sheets that I can use for the math
formulas to use for weaving. Without those, it would be impossible. I try to do
what I can, when I can. I don't complain... I figure I'm lucky, I lived through the
illness. I can't ask for more than that.
I can't support myself financially. This isn't some disease where you get assistance
if you are disabled from functioning in the normal work world. But I will find a way,
somehow, if something ever happens to my wonderful, supportive husband. I don't quit,
no matter how tired I am. And if I can remember what I was doing at the time. Yes, I deal with it by using humor. I laugh at being "brain-damaged". I find the pleasant and humorous side of things and focus on them. Life is very short, so enjoying it as
fully as I can, no matter how crummy I'm feeling at the time.
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Debra
California, U.S.A.
Posted: June 28, 2000 |
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