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| Leigh |
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My story starts when I was 16 years old. I had been out of school a week for what was diagnosed by my doctor as an earache and a cold. I didn’t feel particularly badly, and by Friday I was feeling guilty for having stayed out of school. I decided to return to school the following Monday.
On Saturday, I remember experiencing a sensation that I described to my mother as my brain feeling like it was expanding and trying to get out of my skull. It was not a painful headache, just constant and increasing pressure. That afternoon, I was watching television with my sisters when I exclaimed that the characters were talking in French. It didnt seem out of the ordinary to me because one part of the show we were watching had actually been run in French before. My sisters didnt deny it, but indulged me. That night, I could not sleep because of a noise I can only describe as radio static kept me awake. I got up constantly to make sure my radio and television were off, but the noise didnt go away. On Sunday the symptoms increased. I had a difficult time being able to hear because of the static noise. My family was not sure what was going on, and though it was out of the ordinary, didnt give it extensive thought. But that night, the floodgates broke open. What happened to me Sunday evening was told t me by my family.
I went into a fit, saying that I was someone else, that I was married with children, which was untrue. I also accused my father of abusing me, which was utterly untrue. I roamed the house trying to hide, suspicious that my family was keeping secrets from me or trying to harm me. My parents phoned for emergency assistance. The police arrived first. While my dad tried to inform them of my condition, I ran out of the house yelling at anyone in my way. A policeman accosted me on the ground, accusing me of trying to harm him. My parents explained that I was sick and not in my right mind. Soon the ambulance arrived and after a struggle, I was inside and on the way to the hospital.
At the hospital, I was immediately put in ICU and given all sorts of tests and scans. I may have had one spinal tap that came back normal, but no more were done because the doctors told my parents I was too fat. I was in and out of consciousness and struggling to understand my predicament. Friends came to visit, but I became so excited or agitated that the doctors prohibited anyone but family from visiting. My condition deteriorated as the doctors struggled to control the very high fevers. I also had pseudo seizures and long bouts of sleep. My vision was dark and I couldn't see well or recognize people. Too, the medication I was given caused an allergic reaction, making me tense my body and stick my arms and legs ramrod hard straight out and constantly contort my mouth.
After all the tests and observation, the doctors concluded that I was just suffering from a nervous breakdown due to stress and there was nothing more they could do. After two weeks a family friend was able to get me moved to another hospital. During this time, when I was conscious, I would tell my parents that the nurses were conspiring against me. I was constantly devising plans of escape. My mother told me that one time she came in my room and I and the elderly lady I shared it with were standing in the floor tugging on one another. I was trying to show her out of the room and she was trying to keep me in the room! At the new hospital, I underwent more of the same tests. This time the doctors said that I had some type of organic sickness like encephalitis but weren't concretely certain, even though I had several of the symptoms. I spent two weeks there, and then the doctors said they could do no more for me either. It was evident that I had lost my short-term memory and since the doctors did not rule out psychological problems, I was transferred to a hospital for mental health and drug abuse.
This facility was different from the hospital because patients looked after themselves and moved about the facility as they wished. Because of the memory loss and lack of critical thinking, I was unable to consistently care for myself, not even being able to remember where my room was. The nurses looked after me in between the time my parents were there, even putting a sign with my name on my room door so I could find it. They also told my parents that I did not belong there because I didn’t have psychological problems. After a week, I was released to go home.
The road to recovery was very difficult and disheartening. I had been an honor roll student, a voracious reader and relatively happy teenager. I played the violin and could memorize entire music selections. I am the oldest child in my family, which carried a lot of responsibility. I was also very active religiously in my congregation. After the encephalitis, I was withdrawn, easily irritated and frustrated. I had no memory of being sick and in the hospital at all, which made my new inabilities confusing and frustrating. My brain was overwhelmed by simple tasks and situations. My younger siblings assisted my parents in looking after me which was a big help. But this unintentionally made me feel like a baby and that I was useless.
A few weeks after returning home, I was ready to get back into my old routine and return to school. My teachers kindly sent the work I’d missed to me so that I could complete it at home. I agonized over it, completely baffled as to the reasons why I could not read and understand any of it. I could not read any books because I couldn’t remember what happened from one page to the next. I liked school, and the fact that I was not able to go back threw me into depression. Depression came and went because I couldn’t remember for any length of time what was going on around me that made me feel badly. Mood swings were exaggerated, and I would be upset and cry over petty things. I was constantly afraid that my family members would get sick and die. Many nights I would stay awake checking on my grandmother to make sure she was still breathing. I had lost about twenty pounds while I was in the hospital because I was not able to eat sufficiently. But afterward I was put on cortisol, which greatly increased my appetite. I was always hungry and could not remember what or when I ate last or if I ate at all. Plus, my body was in starvation mode from not eating much while I was in the hospital. Needless to say, I gained a substantial amount of weight in a very short period of time. I loved attending my congregation’s meetings again, which helped re-establish my weekly routine. But I could never remember what went on while I was there. And I would fall asleep almost immediately when I sat down from the extra effort to pay attention. I did not engage much in conversations, being unable to concentrate enough to follow the trains of thought.
My parents took me to various therapists to determine if my problem was mental, emotional, or physical. It was usually hard to help them understand my situation because I looked healthy and well, which was very deceptive. Eventually, with help from a family friend I was able to see a great therapist and receive cognitive remediation therapy, which included playing computer games to increase my concentration, thinking speed and reasoning abilities. After just an hour of treatment a couple of days a week, I would have bad headaches and become very sleepy. The doctor said this was a good sign that the connections in my brain were healing. This treatment continued for about six months and succeeded in helping to restore my memory and improve my thinking processes. My family also helped by buying memory games and playing them with me and helping me keep a journal so I could recall my daily activities. Finally, I was able to continue my schooling with home classes to finish the 11th grade. Before, school had come easily, but afterward, studying for tests, doing homework and paying attention in class was a much greater challenge. I had to drop my advanced placement classes and take general ones. But the following year I was able to return to high school and I graduated with honors.
It has been 11 years since I got sick. In that time I went to college, graduating with honors. I am now 27 years old. I’ve held a full time job with a major corporation for the past 5 years that enables me to live on my own. I have my driver’s license and a car. The doctors say I have recovered completely, and by all accounts it looks that way, but I disagree. Even after all this time, I can tell that I still have problems concentrating and remembering things. I have a very difficult time sleeping at night, usually getting by on 3 or 4 hours of poor sleep. I try to catch up on the weekend, but even if I do get a full night’s sleep on Sunday night, I will still get sleepy while I’m working on Monday. It takes more effort to listen and understand during work meetings, and sometimes I have a hard time staying awake from the effort. It caused some problems with my job, but I try to compensate by making lots of notes for future reference and trying to stay organized so I don’t have to remember where
reports and papers are located. But I still have bad days where I can’t find anything or I have to read a report several more times to figure out what it’s about. I try to make sure the lapses are not frequent, because no one at work knows why they happen. I’m afraid I would be “marked” and my job jeopardized if my boss and coworkers did know. I’ve recently begun reading novels again, but it’s been years since I’ve played my violin.
For a long time I did not know for sure if I had a nervous breakdown like the first doctors suggested, or if something had really been physically wrong. Bits and pieces of the experience returned to me, and made me wonder even more. It wasn’t until I found a site about encephalitis and recognized so many of the symptoms that I realized that’s what I’d had. To me, my life is made up of two periods, before I got encephalitis and afterward. Sometimes I wonder what would have happened if I had never gotten sick. Would I have graduated on time with my peers instead of a year behind? Would I have pursued a different profession, not one chosen based on lesser expectations and abilities? Would I be married and have a family by now? Then I remember it does no good to dwell on the past, but look ahead to the future and concentrate on the things that I can do.
I will be eternally grateful to my family who suffered along with me in my ordeal, but who stood by me and did what they could to aid in my recovery. I also am indebted to my congregation, who not only offered prayers in my behalf, but materially assisted my family. Some gave donations to help with the parking fees at the hospitals, or provided hot meals for my family. Others offered to sit with me when my mom had to go out and run errands. And I was included in social gatherings and outings, which helped show me that I was not alone and I had loving friends who really cared about my wellbeing. My classmates at school and my teachers were very supportive, often sending cards to cheer me and inquiring about my progress, which made me feel missed and loved.
One very crucial thing we learned from all of this is the importance of getting as many different doctors’ opinions as necessary to accurately diagnose and treat any condition. The patient has to take his/her care into her own hands, often having to research treatment options because either doctors aren’t aware of them or won’t suggest them. My parents are convinced that I would have died if I stayed at the first hospital I went to. And the therapy I received was not suggested to us by my doctors. It was a while after I had been out of the hospital before we became aware of it.
In all of this, it would have been easy to question God as to why I had been afflicted with this sickness. But I do not blame God at all for my sickness, because it could have happened to anybody. Why not happen to me? Instead, I thank Him that I had loving people to look after me, that I was able to get the help I needed to get better, and for giving me the strength to endure my situation, whatever the outcome may have been. My faith is even stronger now, and I am confident that He will be with me in any situation I face. This experience has also made me more humble. I never want to blame any of my problems on the encephalitis, but I’ve had to learn to accept my limitations. Looking back, I see that I’ve come a very long way. That hardship and the ones I continue to face now make me appreciate life so much more, because I almost lost mine.
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Leigh
Atlanta, GA, U.S.A.
Posted: June 29, 2004 |
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