I'm so glad I've found this site. I've spent 15 years feeling very much misunderstood about what has happened to me and continues to evolve.
My name is Chris Little Carmack (female) and I live in Exeter, CA, USA, (in the San Joaquin valley just a bit south of Fresno and north of Bakersfield)
I went to India in 1989 with a group of artist friends (20 of us) to explore the textile production in different areas of the country. I actually came down with the big E while awaiting our return flight from Bangkok to Tokyo to Seattle. I spent about 8-10 hours on a 747 being very sick(non-stop vomiting and severe double vision) trying to get home to CA. I can tell you it was a nightmare of a trip and the only thing that really saved me from being put off the plane by the airline people in Tokyo alone was the fact that I was travelling with others who made sure I got home.
It was the first part of December and no one could figure out what was the matter with me. I was not taken to the hospital when I got of the plane in a wheelchair, but taken home by my partner/now husband, and put to bed. The next morning he took me to the ER because I couldn't walk and my vision was double. The dr. in ER gave me antivert and told me I had an ear infection (some infection!) and gave me antibiotics also. After three days of not improving, I called my own physician and he saw me immediately. He sent me to a neurologist who saw me immediately and started running tests. I was tested for everything under the sun. I had MRIs, EEGs, blood tests, etc. After weeks of this, the final upshot from my neurologist was that I had a lesion on the brain stem, I had a rare form of encephalitis (in the US, but not rare in India), and that there was basically nothing to be done. He never identified the type of E and so I then spent the next year on state disability, unable to do much, trying to heal, etc.
The result of all that was that I lost my very good job in aerospace, was never able to go back to work, eventually lost all I'd spent years saving, accumulating, and ended up with no insurance, no job, and filing bankrupcy.
I was 42 when this happened in 1989. It has been a arduous 13 years and I finally decided last spring to file for disability because I just was unable to function outside the home.
My current challenges are that I react to many situations with
confusion, anger, sometimes even temporary paralysis, where I
collapse, am conscious, but can't move any part of my body. It lasts
for approx. 20-30 minutes and then I am able to regain my motor
skills. But after one of these episodes, my brain feels swollen, I
can't distinguish what is really going on around me, and basically am
shut down for a day or two. One dr. thought this was very
My needs right now are to find information regarding what kind of E I
have (my original neurologist told me that one can relapse, so I
assume that once one has this it doesn't go away), accept the fact
that I'll never be who I was in the past, get on disability, and try
and recover my life in some fashion.
In 2000 I felt like I was having a relapse, so I saw a different
neurologist from my original (who had retired), and this fool told me
that as far as he could tell from my MRIs/etc., I'd never had it. I
was so dumbstruck by his remark that I just left his office, went
home and cried for a week. That was the beginning of my latest slide
with my health.
The rest of the story is that I've lived with a wonderful man for 27 years (Joe, now my husband) who has taken good care of me up until 2001 when he had
a stroke which left him disabled and in need of care. I am the caregiver and he is on the road to recovery, but it is slow and exhausting
for both of us. I have been under great stress and have now been diagnosed with diabetes (type 2) and so that has added one more thing
to deal with. I'm doing well with the diabetes but there are so many complications with it that I have to really watch myself.
This is like a bad soap opera--thank the gods that my husband and I
have a good sense of humor and can laugh about things.
Thanks for reading this and listening to my strum and drang. I can't
believe there is a place that I can vent all this stuff. What a
Posted: August 27, 2004