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| Kathie |
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The story of encephalitis is an unhappy one. What makes mine particularly unfortunate is the way I was treated by the medical profession. On the other
hand, I had a wonderful advocate, without whom I may not have survived. And I have had a recovery that may not be complete, but is way better than
some others. I truly feel lucky.
In September 1974, I was 31 years old. I had just left my job as a social planner, to return to school for a Masters and Ph.D., specializing in early child development. My husband had almost finished going to school, and now it was my turn. Before school started, we joined my in-laws for a week in rural Michigan. It was an unremarkable but pleasant vacation. I don't remember much, except swimming in a lake there. My husband recalls that he drove most of the way home, I had a headache and I just didn't "feel right". Subsequently, my headache left, but I had increasing periods of dizziness, loss of balance, and blurred vision. I went to a number of doctors (unusual for me-reminds me how sick I was!), none of whom had any idea what was wrong. Finally, I was so sick that I was admitted to the hospital, through the emergency room.
My coordination continued to get worse, I had constant vertigo, I had frequent "projectile" vomiting, I couldn't write, walk, see straight, talk without great impediment, etc. Eventually, within a few days, I went into a coma-like state for a week or so. My doctors gave me test after test. I'd need both hands to count my spinal taps, not to mention blood tests. I had a brain scan (but this was 1974, and some current medical techniques weren't available), and many other tests. I hate to think how many times I failed to bring my finger to my nose, in the neurological "test". Nothing, however, provided the information for a diagnosis. Finally, the preliminary diagnosis was multiple sclerosis, but the problem was, I did not have the appropriate symptoms and identifying characteristics.
After a month or so, they decided that since they couldn't figure it out, it must be psychological. I had had a problem after a few weeks in the hospital, with an "intention tremor" (shaking especially when I was attempting to do something), however, the strong anti-psychotic medication they gave me made the tremors much worse. In addition, I essentially went into a coma and had serious seizures for over an 8 hour period. Frankly, I am very glad I was not my husband, having to watch helplessly, while I literally bounced off the bed. More unbelievable, he couldn't get the doctors to discontinue the drug---the doctors denied this could be related to the seizures and tremors. In fact, the dosage was increased. (I think the theory was that my body had adjusted to it now.) Within several weeks, they transferred me to the psychiatric ward of the hospital. Here I was, ironically, in a locked ward. I couldn't even sit in a wheelchair without falling, so they eventually tied me into the chair. I shook so
much I couldn't eat, but the psychiatric personnel said that was just an excuse for attention, and I couldn't be fed. I was considered uncooperative and wouldn't talk to the psychiatrists. Meanwhile my husband and my parents have been trying EVERYTHING: 1) to get me off Stelazine (the anti-psychotic). 2) To get me out of the psychiatric ward. 3) To get some reasonable care. Nothing helped until my husband got through to the psychiatric director (by literally sitting at his door), and got an influential lawyer.
Eventually, because they wanted to do EST (shock treatment), they discontinued the anti-psychotic drugs. My improvement was noticeable when the drug was discontinued. I was transferred back to the medical ward and sent to rehab., and there was no more talk of EST, to everyone's relief.
After over three months in the hospital, I was released. I needed a walker
to navigate, I slurred my speech fairly badly. I weighed less 95 lbs. (from a starting weight of 120). I remember using my walker while I decorated the Christmas tree. At this point, I still had no diagnosis. I went to a nearby university hospital and saw the head of the neurology department in the medical school. The doctor talked to me, ran tests, etc., and said his best guess was that I had had encephalitis (although the tests revealed nothing he could identify). In a way, this was a positive diagnosis for me, since I was told that a recurrence or continuation were unlikely.
My reaction to this whole experience seemed to be to try to return to "normalcy" as soon as possible. Going to school was out, but my old place of employment took me back after a few months. (This was truly kindness, rather than any acknowledgment I could do my former job.) Shortly thereafter, I got pregnant with my first child and we moved to a new state.
When I think back on it, I almost can't believe it, most of my friends and relatives probably couldn't either. I didn't really know what I'd had, or what my prospects were for recurrence or recovery. I didn't know if my child would pay a price for my disease. Not to mention, how was I going to take care of a baby when I couldn't even walk? But I had the brash optimism of the young! And I managed, and he's a fine young man of 23 now. I went on to have another child, drive carpools, and do the stuff mothers do. I took college-level courses, taught school, and have had a somewhat normal life.
Within five or six years of leaving the hospital, I regained much of the ability to walk. I think now, people who did not see me regularly would not even know I have limitations. Interestingly, much of this ability is compensatory. I use vision. If I can't see (like at night), I can't walk. If I am looking in a store window as I walk by, I wobble all over the sidewalk. I drive, but I have to give it my complete attention. I once spent two days trying to ski (spent most of my time "sitting" in the snow!), when I realized this was just not important.
My speech is still slurred a little bit, and speaking is more hesitant and halting than it should be. My writing is nothing short of terrible, and writing over a paragraph is physically exhausting. My reading may be slower than it was before, but I don't have a major problem. I still shake when I am doing something I'm not used to doing, but that is infrequent. I fall or lose my balance more than average. My typing is slow and labored. I do most things a little (not much) slower than I did pre-encephalitis. Several years ago, I had a brain MRI (for something else), and the neurologist said I had a "severely diminished cerebellum". Little did he know that I was almost glad for this news, at least there was a tangible result of the disease and cause for the problems.
Finding the encephalitis support group was, as I've said before, a life-altering experience for me. I had really never "looked back", and now, of course, I see what a major impact it had on everything. I have gone through old records (many are illegible), and prodded parents and friends for any information they have. I was really too out-of-it to remember most of my hospital experience. The blessings of selective memory!
Anyway, I would not be here to tell this story, if I had not had the advocacy of my husband. My story is a testament to the need for patients to have an advocate. I have seen many people with serious medical problems, and ALL of them have needed a strong advocate to survive, or certainly to get the best care. I should add that I was in a teaching hospital with a fine reputation---do not let "quality of care" lull you into a false sense of security.
I am lucky to have had as good a recovery as I have. When I read man0y of these stories at "Encephalitis stories", or the stories on the encephalitis listserv, I count my blessings.
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Kathie
San Francisco, Cal. U.S.A.
Posted: June 29,2000 |
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