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| Daniel |
 I contracted Encephalitis in 1997
and my life as I knew it changed overnight. The Encephalitis was contracted by a mosquito bite when I was on my honeymoon or from a flu
shot I received a week earlier, no one can be sure of how I got it or what type it is. And after 11 years I learned that it doesn't matter
what type of Encephalitis you get. If your hit by a car does it matter if it's a Ford or Chevy?
I was married on Valentines Day, February 14, 1997. At the time I was Computer Operations Manager, managing five government agencies in Boston at the "Government Center." I was making a great salary. I had made the Dean's list in college, and had above average intelligence. I enjoyed life, work and play. My new wife of only 5 weeks and I were looking for a home to buy. I enjoyed my family and family outings. I was an avid bicyclist bikeing 8,000 miles a year. I also played guitar and enjoyed my collection of records and books.
Shortly after returning home from my honeymoon I had flu like symptoms one afternoon while at work. I went home feeling ill and never saw my office again.
The following day I had a temperature of 106 degrees and my head hurt so bad I couldn't talk, eat or drink. I was taken to the emergency room, and
they packed me in an ice bed for several hours and my temperature went down a few degrees, I was released to go home that night, at that time they
believed I had the flu.
The next day I was unable to move. I lay in bed in a fetal position unable to talk or convey my feelings. My wife kept talking to me to prevent me from
slipping into a coma. I was taken to the Brigham Woman's hospital in Boston where I was admitted immediately. I had pain of such intensity, that only
those who have had it can imagine. These headaches felt like a ice pick was being stuck in my head. I suffered the tortures of the damned. I was given
heavy amounts of Morphine and Demerol & Percoset all in the same day and it did not stop the pain. I slipped into a coma and when I awoke nothing
was the same. I could not remember my home address when asked by the doctor nor could I remember who the current president was. That was very scary.
I could not remember things at work even though I had worked there a few days before. I was kept in the hospital for a while. While in the hospital
they taught me how to walk again so that I would be able to climb the 5 steps to our home. I was allowed home from the hospital wearing an electric
pump attached to me feeding Acyclovir. I went home to a house that seemed unfamiliar to me. I couldn't move or eat for many days.
After many months I was finally able to start doing little things. I remember telling my wife after about 4 months that I had gotten up on my own and gotten
an apple from the refrigerator. It was a small milestone. Each day I pushed myself to try to do a little more. The improvements came very
slowly.
Friends and relatives soon stopped calling and the cards stopped coming. I was alone with my wife & daughter facing this illness. I soon learned that not
even the medical professionals knew much about this illness. My wife sought help from our HMO. We had to ask many, many times for therapy.
Finally a meeting was held at the HMO between my doctors to see if I would benefit from therapy. I sat in front of 5 people while they
observed me and discussed whether I should be allowed therapies. I remember this sentence being spoken "how much is this going to cost?"
And I remember thinking even in my fog that money seemed more important to them than my getting well. As I sat there at the meeting they
referred to me as "he" and not as "Daniel" while I sat across from them, I must have become invisible. After the other's spoke, I was
allowed to speak in my behalf. I found your humble narrator pleading for any therapy that would help me get well. Eleven months after
I first got ill I was finally given my first therapies. The therapies I should have had in the begriming.
Eleven years later and I am doing much better. I'm better than when I left the hospital, but than I was very close to death at the time. I am only a fraction
of my old self. After 11years, every day is still a struggle. I have chronic fatigue every day, you may recall encephalitis was referred
to as the sleeping disease. I drink a lot of coffee to keep active. I have a lot of bad headaches and I have other symptoms too numerous
to mention.
I made progress by playing on the computer for hours to keep my mind active. I got bored playing computer games, I wanted to do more so I enrolled at Clark
university and I got a degree as an "Oracle DBA." This is a very intense course, but I did it and got all "A's". I had a fantastic teacher
named Gary and he helped a lot. My doctor and family suggested that I would not be able to work in the fast paced world of a DBA, I could
not work around the clock as they sometimes have to. On the last day of the course a tear came to my eye. I realized that all my class
mates were going off to be DBA's and I would be staying home. I never told my classmates what the doctor had told me and we all congratulated
each other and went our ways.
I was disappointed for awhile because I had tried so hard. We moved and I decided I would try returning to college again. This time I would plan on
taking courses that would help me work, but not require such a fast pace. I took the Webmasters course's. I graduated with honors. I created
this entire web site that you are now reading. I am hopeful of finding a job doing web sites. It would be nice to have a salary again
as I am surviving and trying to keep a family on my long term disability insurance money which is a fraction of the salary I used to make.
Friends have suggested that I should permanently retire. It's easy to say this, but they don't walk in my shoes so do not understand how
important it is for me to work and feel useful.
If I could give you just one piece of advice about Encephalitis, it would be start lining up Physical, Speech and Occupational therapies as soon
as you can. These are the key to your recovery.
My way of helping others with this illness is to give this web site to the world for all the people who have gotten encephalitis and need information
that was not available elsewhere when I got ill. Yes, a diminnshed encephalitis survivor built this entire web site you are now on. I have found much
comfort in helping others through this web site. There is a special bond between people who have survived encephalitis.
Sincerely,
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Daniel
Massachusetts, U.S.A.
Posted: Feb. 1. 1998 |
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