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It was a bright sunny day in June. Life was good. I was out
with my neighbor taking our two-year old girls for a walk. I
had just found out that I was pregnant and was very excited.
We were walking and chatting when all of a sudden I felt a hot
gust of wind blow in my left ear. I turned to my friend and
asked her if she had felt that gust of wind. She said that she
hadn't felt a thing. We both thought it was strange but didn't
think any more about it.
The next day I had plans with another friend to go swimming. I woke up with a
headache but decided to go anyway. My headache was getting worse
by the hour. Tylenol just wasn't helping it. I muddled through
the day the best I could. We were on the way to the pool and
I told my friend about my headache. She was sympathetic of course.
We had been at the pool for about twenty minutes when a storm
started to brew. There was lightning flashing in the distance
so the lifeguards decided to close the pool. I was secretly
glad because my head was hurting so badly. All I wanted to do
was sleep. When my husband came home from work I went directly
to bed. We decided if I didn't feel better the next day I would
go to the doctor.
The next day was a Saturday and I felt worse. A friend of mine from Washington was in town and I had planned to meet her for lunch. I called her hotel and cancelled our plans. My husband insisted I go to the doctor and I was too tired to argue. The whole left side of my head and neck hurt. The pain was unbearable. I thought I had a really bad ear infection or something. I also thought of the hot gust of wind. We got to the doctor's office and the doctor couldn't find anything wrong with me. I didn't have a fever. My glands weren't swollen and my ear looked fine. He didn't bother to look any further and suggested a sprained neck. I asked if he thought I should see a chiropractor and he said no. He said to go home and take some Tylenol. I told him that Tylenol was not helping. He shrugged and left the room. I guess I was being dismissed. I went out to the lobby and found my husband. I was sad and angry because the doctor didn't help me. I knew something was wrong. This was not your ordinary headache or migraine. I hurt so badly. I was too weak to say much.
We tried to go to dinner since I hadn't eaten all day. I could only sit there
and hold my head. When we got home I started to throw up. I
thought I would never stop. Finally I crawled in bed. The next
day was Sunday and I felt even worse. I slept most of the day
and my husband woke me to go to the doctor again. I cried in
protest because I feared a repeat of the previous day. My husband
came in the office with me this time since I was not well enough
to explain things to the doctor. I still didn't have a fever
but this doctor seemed to believe that something was wrong.
The doctor said that my ear was very red and prescribed some
antibiotics. I couldn't take much else since I was pregnant.
I started throwing up again when we got home and continued off
and on throughout the night. I hurt so badly that I didn't think
I could take any more. I started asking my husband to shoot
me. The drops didn't seem to help and the pain continued to
worsen. I put an icepack on my head and neck and finally fell
asleep.
I have no memory of the next several days. The doctors and my husband filled me
in on what happened. On Monday morning my speech was slurred
and I was incoherent. I was still throwing up. My husband called
in to work and started to get himself and our little girl ready
to take me to the doctor once again. He went downstairs to get
some things out of the dryer. Our little girl came running down
the stairs yelling "Daddy! Daddy! Mommy is crying!" He ran upstairs
to find me in the throes of a Grand -Mal seizure. He held me
on the bed so I wouldn't fall off and get hurt. When I stopped
he called 911 (the emergency number).
Right after he hung up the phone my mother happened to call. My husband filled
my mother in on what was happening and she said she'd make some
calls and meet him at the hospital. The ambulance came and was
getting me ready for transport when my neighbor came running
up. She offered to take our little girl and scurried home with
her. We got to the emergency room and I was put behind a curtain.
My family arrived and they took turns being with me while my
husband consulted with the doctors. I was last priority since
I wasn't bleeding. When he got time the doctor would look in
on me. I continued to throw up and was incoherent. I didn't
remember that I was married or had a daughter. After eight hours
in the emergency room and a bunch of tests the doctor still
hadn't figured out what was wrong. He said that sometimes it
takes a while for people to come out of a seizure. He suggested
maybe sending me home and coming back the next day. My husband
and family protested and he agreed to admit me to the hospital.
I was wheeled upstairs to a room and the attending physician looked in on me.
She decided to transport me to another hospital immediately.
I was transported by ambulance to a larger hospital that was
better equipped for major test procedures and that had a neurologist
on staff. The neurologist came in and looked at me and said
he didn't know for sure what was wrong with me but he suspected
an aneurysm. He called another specialist from home and asked
him to come in and perform an angiogram to determine if I had
an aneurysm. The specialist came in immediately. It was 11:00pm
by this time. The angiogram results came out negative. The doctor
then ordered an MRI. The MRI showed signs of encephalitis but
was not conclusive without further tests. The doctor informed
my husband that time was running out he needed permission to
start treatment immediately or I would be dead in a few hours.
My husband granted permission to start treatment and asked what it would do to
the baby. The doctor told him he didn't know but that he needed
to save the mother in order to save the baby. They started treatment
right away. I started to respond to the treatment very quickly.
However, the whole left side of my brain was full of fluid and
covered with infection. They told my husband that the baby would
probably be severely damaged and recommended terminating the
pregnancy. The first priority of course was to wait and see
if I would live. The following morning I woke up and was somewhat
coherent.
Two days later I was out of ICU. The doctors told me how lucky I was. I didn't
feel so lucky. I was still in a lot of pain and I was worried
about my baby. The medicine they used to save me had hardly
been used much less on a pregnant woman. The medication they
used to stop my seizures had also been known to cause deformities.
They said all we could do was wait and see how the results of
the ultrasounds came out. That wouldn't be until I was five
months along and I was only two months at the time.
Next I got to find out my own limitations. First off I couldn't drive for at least
six months. That's provided I didn't have another seizure. Now
lets go take some tests and see what else I can't do. I was
given a battery of tests. The same tests they give to stroke
victims. I found that I had short term memory loss as well as
some other problems. I couldn't do math equations. Reading which
was one of my favorite pass-times was also a problem. I was
told I could re-learn all these things with therapy. In the
meantime I couldn't be left alone for at least six weeks. I
was released from the hospital two weeks after I had been admitted.
I needed to be babysat for six weeks. I couldn't drive for six
months and my baby was in serious trouble. But hey I was lucky
to be alive. I was depressed and angry.
I went to therapy to regain some of my memory. Every time I went I found something
else I couldn't remember or do. I did my very best to cope with
everything. I wanted mostly to be able to take care of my self
and my little girl. The day finally came. I was alone at last.
I could take care of my family again. That day was quite a milestone.
I was progressing well. Everyone kept telling me how lucky I
was. I didn't feel lucky at all. I couldn't cope with anything.
The simplest thing like spilling my coffee could change my mood
from bad to worse. I was so low that I didn't think I could
get any lower. I got so frustrated that I felt like I was nuts.
I tried to explain myself to my family and friends but I failed
miserably. I just couldn't express myself well enough to be
understood. I had no patience and I just lashed out at everyone.
I felt like no one understood. I really never gave anyone a chance. I just assumed
that they knew how I was feeling and would give me a break.
I was wrong and because of that I lost some of my closest friends.
I did my best to pretend it didn't bother me but it did. My
depression, fear, and anxiety continued to worsen. I was feeling
really bitter also. I wanted to know why me? My moodiness and
anger were taking their toll on my marriage also. I tried to
explain myself to my husband and he did his best to understand.
All I had left was my family, my little girl, barely a marriage,
and a few friends. Could I get much lower? Oh yes.
After Christmas I was put on bed rest. My blood pressure continued to go up and
my baby was at risk. More than before that is. I was feeling
worse by the day. I was worthless as a wife, mother, friend,
and person. I couldn't even keep my unborn child safe in my
womb. Mercifully the baby was developed enough to come out early.
My battle was almost over. My labor was induced and after 12
hours of torture our perfect baby boy was born. Perfect!!! He
had all of his organs in the right place, all of his limbs,
fingers and toes. He was even cute too!! The baby that was going
to be so sick and malformed came out perfect. I can't even begin
to explain what a miracle he is.
The moment he was born I began to feel better physically, mentally, and spiritually. With every day that passed I felt better. I still had a long road to recovery but it was a downhill battle from there. I was scheduled for a follow up MRI and EKG to see the extent of my brain damage after the baby was born. At my follow up appointment I told my neurologist about our healthy baby. He was very pleased and happy for us and expressed how lucky I was. I was starting to believe it by then. He explained to my husband and I that people with the amount of brain damage I had sustained from the encephalitis were usually lucky if they could walk or talk. Here he was holding on a conversation with me and I wanted to know when I could drive.
The doctor left the room to take a look at my brain scans
and EKG results. When he came back he looked strange. He sat
down and took a deep breath. He started to say something and
then stopped. He stood up and said it would be easier to explain
if he showed us my results. My heart sank. I figured it was
bad news like a brain tumor or something. Maybe I wasn't so
lucky after all. He showed us the brain scans from when I
was first hospitalized. As I explained earlier the entire
left side of my brain was blacked out. Then he showed us the
current scans. He was grinning from ear to ear. He showed
us that there were absolutely no signs of any brain damage
at all. The doctor kept repeating this just doesn't happen.
He said he had been so pleased to even be able to converse
with me and be able to understand me. He said it was a miracle
and this just doesn't happen. I am lucky. I am grateful and
I am humble. .
I thought the day I walked out of the doctors office I would
be able put encephalitis behind me. I have found new limitations
as I go along. I am also finding solutions and support along
the way. I know that I will always have to try harder to do
the things I used to do. I have less energy and stamina. I have
depression and mood swings at times. But most of all I have
hope for a brighter future. I have my family intact and my true
friends are still here. I have met many new and wonderful friends
through this illness that I would not have met if it didn't
happen.
To this day the doctors are unable to determine the type of
encephalitis I had. I was treated with Acyclovir which is a
very strong anti-viral used to treat patients with herpes encephalitis.
I went for further testing after my release from the hospital
because the doctors really wanted to find the cause. A cause
was never found as I tested negative for everything and I have
no immune system problems. I guess it will always be a mystery.
Just like the hot wind that blew in my ear.
Sincerely,
Melanie
Minnesota, U.S.A.
Posted: June 30,2000
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