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My Experiences with Encephalitis

Contents

Part 1: The Beginning
Part 2: The Struggle
Part 3: Starting to Recover
Part 4: Further Strides
Part 5: Other Effects

On September 23rd, 1992, my life changed. Until then I had been a single woman, somewhat obese, with what one friend calls "bodacious ta-tas". I had been working as a technical writer for a small consulting firm in Atlanta until I was laid off September 11th, and I was searching for a job in the same field. I had a Victorian-style house, built at the turn of the century; two Labradors, Molly (a chocolate) & Annie (a black); and a roommate. All were in Barnesville, Georgia, a small town about half-way between Macon and Atlanta.

The weekend before the 23rd, my roommate and I went to "Buggy Days": a local heritage festival with an attached arts & crafts show. Going there is my last clear memory. I'm told I complained of a severe headache and was excessively sleepy on the 22nd.

While I don't doubt that's true, I don't remember it. On the morning of September 23rd my roommate found me sleeping on the sofa and attempted to rouse me. Unable to do so, she took my temperature, which registered 106 degrees. She called an ambulance, but because the EMTs managed to get me up and walking while they supported me and because I was talking some, they concluded I was either on drugs or drunk and declined to transport me. When my roommate pointed out my temperature, she was told her thermometer must be broken, as "no one's temperature could be 106." At no time did they check my vital signs, including temperature, blood pressure, or heart rate.

When the ambulance declined to transport me, my roommate decided to take me to my personal physician, Dr. Bruce Perlman of Peachtree City. I have flashes of memory in Dr. Perlman's office: I seem to remember being in an examining room, and also being taken for a chest x-ray. Despite all this, he could find nothing, although something was obviously wrong, so he sent us to the Emergency Room of Piedmont Hospital in Atlanta.

At the ER, I met Dr. Philip Brachman, an infectious disease specialist who would be my principal physician for the next 5 weeks. Also, my parents were there, having come from Tennessee. Dr. Brachman, pointing to my parents, asked if I knew who they were. Haltingly, I'm told I answered "my mother and my father." Those were my last words for a long time -- while I can't exactly say when I spoke again, I know it was late in my time in ICU. From the ER, I was taken for a CAT scan and then transferred to ICU, where I stayed about 5 weeks. In ICU, I began having flashes of awareness again.

Apparently, these flashes of awareness aren't unusual. The unusual thing is that I remember anything; like the flashes in Dr. Perlman's office. My brain, I am told, had more important things to do than form memories. Things like keeping me alive, for instance. Thus, it's not surprising that I don't remember the ER (at all) or the first weeks of ICU: my body was busy trying to stay alive during that time. I'm told that I showed emotion when procedures were painful. Not remembering them is a blessing, I guess.

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Part 2: The Struggle

Once I was in ICU, the task of finding out what made me sick began. Dr. Brachman tried a number of tests, none of which showed anything. He was still getting test results back on me when I was transferred to a rehabilitation center in Knoxville, Tennessee.

Meanwhile, I was on every antibiotic known to medical science: all intra-venous.My mother says there were so many IV poles around my bed that they looked like trees. None of the treatments seemed to work, although all those antibiotics caused my kidneys to shut down and put me on dialysis. The nephrologist (kidney specialist) was afraid I would never get enough kidney function back to get off dialysis, but my kidneys rallied and I was off dialysis by the time I left ICU.

I was on a respirator via a throat tube for a while. I kept biting the tube (despite a bite block) and would get it all up in my mouth and then spit it out. Strange behavior. The staff wanted me to breathe on my own (without the respirator) but were afraid my lung capacity wasn't enough to let me do it. They tried taking me off the respirator, and when I couldn't get my breath, a tracheotomy was recommended. My family went out to the waiting room, expecting about a 15 minute procedure. Two hours later, the staff came out of my room. In the meantime, my heart had stopped and I had been revived via electric shock. I still have the burn marks from the paddles. I was an atypical patient for ICU, like nothing they'd ever seen before. That's mostly because viral encephalitis is fairly rare (one doctor called it "a bizarre encephalitis") and often fatal.

The antibiotics weren't working: I wasn't getting any better. Viral encephalitis can best be understood as an infection in the brain; but it's a viral infection, not a bacterial one. Where most common infections are bacterial and treated by antibiotics, in a very real sense throwing antibiotics at whatever I had was like trying to treat a common cold with antibiotics--chances are good that whatever virus is behind the infection won't respond to the antibiotic. Piedmont Hospital is not only one of the premier hospitals in Atlanta, it's also just across town from the Center for Disease Control. Brachman had already sent some samples to the CDC to see if they could figure out what I had. They couldn't.

Dr. Brachman finally recommended an experimental antibody, Ha-la, that was undergoing trials at Piedmont. Only trouble was, it was a double blind study: he didn't know if I'd get the actual drug or a placebo. If I got Ha-la, I might live. With a placebo, I'd probably die. He got permission to enter me in the trial and within hours it was obvious I had gotten the drug. I had turned a corner. I was probably going to live.

So what did I have? We still don't know for sure, although the multitude of doctors who saw me are pretty sure it was some form of viral encephalitis. How did I get it? Again, we're not sure. One conjecture is that it was from a mosquito bite. There's evidently a big mosquito-related encephalitis problem in north Florida; one or more may have found its way to Georgia. I was taking a systemic medication for psoriasis when I got sick: it may have lowered my immunity. At least that's one theory.

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Part 3: Starting to Recover

I went from Piedmont Hospital in Atlanta to Knoxville, specifically Fort Sanders Regional Medical Center, which is home to the Patricia Neal Rehabilitation Center, by ambulance. I slept most of the way, but I remember it was a dark, rainy day. We had to leave Piedmont by 5:30 AM to be at Patricia Neal on time. We only stopped once, for gas. We were almost to Knoxille by then, well into East Tennessee. I can remember reading a sign aloud through the open doors while we were stopped: "Cold Beer", I said. The ambulance attendant laughed and said he didn't think they'd let me have one.

Patricia Neal Rehabilitation Center is located on the 3rd, 4th, and 5th floors of Fort Sanders Regional Medical Center. The 4th floor has two wings: one for traumatic brain injury (TBI) patients, like me; and one for non-brain injuries or illnesses that required rehabilitation. The most obvious difference was that the TBI unit had a locked door: you could get in, but you only got out if someone pushed a button at the nurse's station or if you had a coded badge. That bothered some people who didn't think they needed to be locked in. I didn't think so, either, but it never bothered me.

The first couple of days, I had therapy in my room I was officially admitted as a quadripelegic, but I had so little muscle control that I couldn't sit in a wheelchair, so anywhere I went, I went by gurney. Gurney or no, within a few days I was going upstairs for physical therapy, occupational therapy, and speech therapy. My physical therapist was a woman named Eileen. I found out later she had been in PT herself, as the result of an automobile accident. I also heard many other therapists say she was the PT they wanted, should they ever need one.

At first, PT came to me instead of my going upstairs. The second day, I remember Eileen trying a Hoyer lift (heavy cloth under you, attached to an arm that "ratchets" up) to get me in a wheelchair. Somehow I slipped, either out of the lift or out of the chair, and it fell on Eileen to catch me. It took her and a couple of PT aides to get me safely back in bed.

After that, PT must have given up on the wheelchair for a while. I went upstairs to PT on my gurney and it was a red-letter day when PT found me one with an adjustable back! From the gurney, I was transferred to the tilt table. This is what it sounds like: a padded table, about single bed size. The patient is strapped to it, and a remote control raises the head. The amount of lift is measured in degrees. The object is to eventually get to 90 degrees . This is harder than it sounds--once you're up, you're "standing"--the muscles used in standing are getting a workout. Gradually, as the amount of lift increases, you stand straighter and straighter, putting more and more pressure on your legs and feet. I was on the tilt table for 20 minutes at a time. Before I could try walking, I was doing squats on the tilt table at nearly 90 degrees.

The other thing I was working on in PT was sitting. We started out with a sheet behind me and Eileen or one of the aides holding the sheet, both to help me up and to help hold me once I was up. Even though I needed assistance, sitting up worked the muscles that held me erect and got me ready for a wheelchair.

Soon I was, in fact, ready to change my mode of transport from gurney to wheelchair. I was still using a wheelchair to get around when I was released from the rehab center in March of '93. I'd spent Thanksgiving in the hospital and Christmas on a two-day pass that let me visit my folks.

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Part 4: Further Strides

For months after my release from the rehab center, I continued my therapy. The most noticeable improvement took place in physical therapy, where I went from wheelchair to crutches to independent walking in the space of a few months.

But as I improved, I began to want to return to my home in Georgia. My roommate had (with my family's help) been making the mortgage payments, so my house was still there. My dogs were, too. Despite their misgivings (who would take care of me?), my parents re-installed me in Georgia.

First order of business was getting my driver's license back. To my mother's chagrin, that was almost too easy. Second, finding a place to continue my therapy (which continued until January of '95). Accomplished when we found a therapy center 15 miles from me. Finally, making contact with the Georgia Department of Rehabilitation.

I met the criteria for service with no problem. My counselor was more than helpful, but sometimes needed a bit of a "push". By late 1994 I was tired of doing nothing and decided that my forced unemployment provided an ideal time to finish my undergraduate degree (I already had 2 years' worth of credits). Despite my "hints", Vocational Rehabilitation (VR) didn't pick up on any of them. Finally, I applied to National Louis University, was accepted, and got my financial aid in place. That woke VR up--they agreed to pay tuition, books, and mileage in order for me to attend Clayton State College. I graduated from there in the Spring of 1996, had sold my house, and moved back to East Tennessee the week after graduation. I've been looking for a job ever since.

Since I wrote the above, I've done contract work for Top Dog Endeavors and written feature columns for KALEIDOSCOPE Interactive.

Update: I'm Administrative Director for Pets and People: Companions in Therapy and Service. I got my Masters degree in Information Systems from Mississippi State in Spring 2000 and am now living in Alabama, near Mobile. I work for the computer center at the University of South Alabama.

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Part 5: Other Effects

I don't suppose anyone can imagine what it's like to be unable to communicate. You can't ask for the simplest thing; if you need something, you can't get that across, either. Imagine not even being able to say "I'm thirsty"! People tried to anticipate what I needed; so I was never really hungry, or thirsty, or cold; but even so, those things were provided when someone else thought I needed them, not when I asked for them.

After a while, my family realized the tube from the tracheotomy made it impossible to speak, so although no one was sure my cognition was all there, the ICU staff at Piedmont brought me a letter board, which is just what it sounds like: a board with the alphabet on it, so I could point to letters and make words. No one counted on the fact that the encephalitis had so destroyed my motor control that I couldn't control my hand to point. (I still have some residual tremor & weakness more pronounced on the left side. It makes it difficult to carry anything, but I manage the tremor through medication and use of an arm support on the left side while keyboarding).

Yes or no questions were relatively easy I could nod or shake my head, eventually. I have clear memories of being unable to control turning my head from side to side--in fact, when I got to Patricia Neal, I was almost bald. One ICU nurse finally suggested I mouth the most important word in the sentence. In this very rudimentary way, I began to communicate. And it was frustrating even with only one word, I can remember many times I simply could not get my point across.

By the time I got to Patricia Neal, things were some better. I had mostly quit rolling my head (although it was still in almost constant motion), the trach tube was out, and although not supremely intelligible, I could speak, some. Lack of motor control precluded a letter board or writing by hand; using a computer to write came much later (but has since become my primary mode of communication).

This inability to control my communication was especially difficult for me. I have a number of friends who call me a control freak. I was sure not in control now. Words, both spoken and written, have always held a special place in my life...I was a member of the debate team in junior college, and after we won the state tournament, I was offered debate scholarships to 2 different schools. I read before the congregation at church, also in my best friend's wedding. I sang. I worked, singing and playing guitar two summers at a church camp. I wrote my own songs, and made a demo tape with a friend's help that included 3 original songs, one of which I sang at a friend's wedding. I played and sang both as wedding gifts and for pay. I was good enough at writing that I often wrote papers to meet course project requirements. I preached and I wrote in church I had both permit and a ministerial degree. All that was behind me, at least for the time being.

The thing that made all of this so horrific to me was that, cognitively, I was fine. I knew I couldn't communicate well. It bothered me then, it bothers me now. Someone once pointed out that the world views lack of speech as negligible on the scale of disabilities. Maybe. Largely through the efforts of my speech therapists, I am at least intelligible in person now, although telephones and drive throughs are sometimes a problem. While much work and therapy has made me ambulatory, I would gladly be wheelchair-bound if it meant having my voice as it was before.

That sounds like a bad trade. Consider this: the world tends to equate lack of speech with lack of intelligence. I know, having been in a wheelchair and knowing a number of folks in one, that the wheelchair-bound occasionally run into the same prejudice. Not as often, believe me. In the world's eyes, if your speech is impaired, your thinking must be impaired, too.

Although my illness has been frustrating to someone who never considered what it might be like to have her speech snatched away from her, I have learned some important things. I still have all my skills intact, so it is up to me to be patient while I let others know that my speech might sound odd but I am still sharp. That is the ultimate lesson in communication: getting people to listen, not just hear.

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site linked above created by Barbara Anello, a brain injury survivor

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Copyright 1996-2000 Mary Heath Johnson
last update November 2000
URL: http://village.fortunecity.com/martina/170/bio.htm