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| Julie |
My name is Julie. I was diagnosed with encephalitis when I was seven years old. I contracted the illness when I was six. I can remember exactly how it started.
My father built a skating rink in our back yard. One of those aluminum things. He was filling it with water and my seven brothers and sisters and I were waiting for it to fill and then freeze. Lots of our friends were over, skates intact, and we were all willing to sit and watch the rink freeze.
I can remember that I was sitting on the edge of the patio watching my father when it happened for the first time. Everything started to "fuzz over" and then turn and twist around. Almost like being on a spinning amusement park ride, only worse. It hurt somehow. It felt like it was under my skin. I could not speak. I remember crawling to the other side of the patio so that nobody would notice. Nobody did. I held my head between my legs for a very long time. Then it was gone. I was never one to complain about anything. One,because if I was sick then I couldn't play outside; and two because I considered myself to be very "tough", a tomboy, if you will.
I had several similar attacks in the following weeks. Once I passed out in the middle of a school play. Then again in the cafeteria. Then came the nightmares. They happened every night. This is when my parents figured I should see a doctor. In the nightmares I would walk in circles and chant inconcievable words. Over and over, until morning or overwhelming fatigue. I can sort of remember my parents trying to pull me out.
I spent nearly a year in the hospital after that. I missed the whole second grade. My parents went through hell that year. Once they were told that I had lukemeia as the illness had caused a severe drop in my white blood cell count. I can remember lying on tables and holding onto my mothers hand as blood was drawn from my seven-year-old body. I can remember looking into her eyes and hearing her say "You are my strong girl." I beleived her and I did not cry when needles were stuck into me.
Funny thing is, I was not strong. I just put up a front so she would not be hurt. At night, I cried and prayed for answers. For life. To be "normal." I remember the day I had the E.E.G. It provided the answers we had so desparatelly sought. It provided the diagnosis of encephalitis. It made my mother dance with joy. I was standing next to her when she got the news over the phone. I would not die. I did not have lukemeia. I could be treated.
I took medication and soon I learned to skate again. Slow at first, but then long and
flowing. My mother cried as she watched me regain my balance. I skated: then rode my
bike and climbed trees and punched out the nieghborhood bully. I exceled in school. I
had passed the second grade by doing my work in bed. I took a test before entering the
third grade and was told that I had and exceptionally high I.Q. and could skip the
third grade.
School was easy for me. Encephalitis did not affect me in this way. I loved learning,
still do. It is just to bad that I was not "cured" of encephalitis. It has reared it's
ugly tounge at me several times since my first experience.
I understand encephalitis to be a viral infection. Viral infections cannot be cured.
The common cold is a viral infection. So is AIDS. Putting the common cold into
submission is possible, curing it is not. One has to "ride out the storm", so to speak.
Same goes for encephalitis.
I am now thirty-seven-years-old (2005) and I am still riding out the storm. I can not possibly count the times when I have been tormented by this illness.
It has changed me as a person. It has made me have to explain myself to lovers and friends. It has made me try to explain to others that which is
uncertain. That which frightens me sometimes. That which is unforseeable. And that which is very, very real. Only to me.
I am a naturalist at heart. I did not lose my love of life and nature through this
disease. I just became afraid. It was only after I had my son that I decided it was
time to re-evaluate my illness. It was only when he woke up in his crib and was calling
"mommy" that I realized I needed help. I was in an encephalitis dream and I could not get out. I was screaming too get out but I could not. It could have been an hour, I do not know, but I could not rise from my nap too pick him up and kiss and smell him. I could hear him. I was begging to get out of the dream. But encephalitis had struck and I was stuck. I was having seizures. Kicking and screaming. Just to wake up. When I finally pulled myself from the nightmare, I ran up the stairs to find my baby. His chubby leg was stuck between the bars of the crib and he was crying. I tried to pry the bars apart to no avail. I called 911 and got my sweet love out of the prison he was in.
Never again did he sleep in a crib. Never again did I nap during the day. My son is 11 years old. I am tired and I am proud and I am tormented. Most of all, I am proud.
I have researched encephalitis in great detail. I will be doing my disertation on the illness. I will make this disease known. I do not care if it is five or fifty who understand. Or even one. Or even just me. Selfish, I am not. Frustrated, I am. I have gone to doctors and been given temporary solutions. I have read books and been accepted to medical schools. Most importantly, I have cried tears for what this illness has done to me, my family and my relationships.
I am about solutions and hypothesis. I am tired of having seizures. I am tired of being tired. I do not want to miss any part of life. I want to see my son graduate from college. I want to see the look in his eyes when he achieves. I want to have spent every moment contributing to my son's goals. He deserves that.
Calling all Artists....I wear a Scarlet Letter. Proudly. This is not to say I am not looking for a cure. I am on the realm of the ship. Rain splashing on my face.
Write to me.
This website helps!!!!!!
Let's beat encephalitis work without drugs.
It can be done because the soul is far stronger than the words.
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Julie
Any State, U.S.A.
Posted: April 11, 2001 |
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