Encephalitis Cases

Dianna Hello, my name is Dianna, and I was 30 years old when I was diagnosed with viral encephalitis in February 1994. The following is my story: As you read the following, please read it as if you are looking through the eyes of one who has experienced a serious illness, and not your own. Many people, who have never personally experienced first hand a serious illness, do not understand or realize how very important it is for the person who is seriously ill to be able to hear an encouraging and uplifting word that could help motivate them to pull through and not quit the fight for their life. Sometimes, you don't even have to speak, but just be there to and give the gift of time and a warm embrace. The gift of time is the greatest gift! When you do come to visit, really come to visit. Do not rush in and hurry out. For anyone to receive words of encouragement and given time, from another, this is truly the material of what a gift is made of. I am a survivor of a very serious illness called viral encephalitis. It can leave a person with brain damage. A lot of people do not survive. It is very rare that one who has had the severity of my particular degree in which the entire brain was swollen to be able to function with any kind of "normalcy." This was a very severe case, and yet I am here to tell you about it. People seem to be there in the very beginning upon hearing you are having difficulty, but then you hear from no one. It is as if you do not exist any longer. When you are in the hospital, you receive calls and everyone is showing such great outward concern for your life, and say they care for you and love you with sympathetic voices showing concern for your welfare. Some will even show an ability to understand or share your feelings. But somewhere along the journey of your trail you hear from no one and are left on the pathway alone. As soon as I was no longer hospitalized, it was with great infrequency that I saw anyone nor heard from anyone. I guess they just may have thought that since I was no longer in the hospital physically, I was all of a sudden completely recovered. I am still very much recovering from the emotional, as well as some physical, trauma that is personally being faced NOW. I am greatly disappointed in how the "professionals" are helping a person get through a serious illness. In other words, they are in charge of helping your healing process. There may be a few "professionals" out there who really do care to help a person through a serious trauma in their life, but I must admit they are very, very rare. I have yet to meet a Neurologist who sees me as a whole person and not just a part of my anatomy. I am a complete person, not just a brain or an illness in which I am still healing from. I was told not to cry by one of my doctors as he came in to check on my progress. I would like to see them not cry facing the same trauma that one faces when your head is swollen and you have complete memory loss, and don't know where your life is heading. What warm and uplifting and motivating and enlightening words to speak to someone who is now facing a very serious life challenging existence. I was told that doctors could not get too involved in my case by being sympathetic with the issues at hand. They had to remain "professional" in their field of work. All I have to say is, "What the heck are they professing to be doing, if it is not to help a person become well who is in need of a supportive and caring person?" I have personally yet to find a neurologist who is there to help me through my healing. Who hears what I have to say. They are so "professional" that they cannot hear anyone but their own selves. Perhaps it comes from too much book knowledge and not enough heart. They might experience more success in their "professional" field of medicine, if they tried a lot more sympathy towards their patients who are now facing a very serious challenge in their life. One of the many issues I now face is that I have seizures from my head injury from. I had to give up driving and now be totally dependent upon others to drive me around. I was not at all used to that. You now have to have someone drive you and you cannot be alone. This is a reality for me and a lot of other people. I made the choice to not drive for the safety of others and to myself. Life is interesting and everyone experiences it differently. Going through this serious illness has certainly given me the personal experience of how important a kind word and action can truly really help you improve and motivate you into setting goals and reaching towards obtaining them. It is truly too bad people cannot recognize that life is too short and you do not know what will befall you at any given moment. My Dad was killed when I was 21 years old, in a car accident. It was quite a shock to me. I had a close and friendly relationship with my Dad. He was my mentor, the person whom I would go to if I had a situation in my life to discuss. When he was killed, I was lost. You truly do not know what role a person holds in your life until after they are not here to fill it. As you read the following questions, try to imagine how would you handle them? What would you do if you had to give up driving? You had to find someone to take you to where you needed to go? You could not be alone when you went out in public? You could not take a walk around the block by yourself alone? You had to stay home all day without any outside contact? No social contact that you once had known while working? You no longer had a job? You have no skills or a memory of the skills you once had held? You really do not have complete memory of your life? You now have seizures, and don't know what will set them off? You lose consciousness of where you are or what is going on? Sometimes you have partial paralyzation on one side. What if you were 30 y.o. and your life was now changed forever? Try to find a neurologist who cares who is willing to help you? You have no family to talk with about what you went through. Going through an illness such as viral encephalitis, and you lose your complete memory is like having all this very, very special important data that you saved on your computer and some diskettes for backup, and then your computer crashes and you loose your backup diskettes so now you cannot reboot your computer to where you can be able to retrieve all these memories you once had. You have now lost your entire hard drive and all your very, very precious and important memory is now gone. The computer looks the same on the outside, but on the inside of the computer it is different and not able to function as it once had done before the crash. It looks the same, so it must be okay! They may look the same on the outside but internally they are different and cannot remember things as they may have before. Following is my documented story about my personal experience of having viral encephalitis: It was January 28, 1994, Friday, and I had recently started a new job and a few days earlier I started feeling illl. I felt bad not being able to go to work because, as you know, it did not look good to a new employer to not come to work. I knew it did not look good, but I could not help it, I really was sick. I thought I just had the flu. Also, during this time, I was going through a divorce and was already separated and the divorce was final. I was now living in an apartment on my own. I had already been separated for almost a year. I would like to mention here that during the early part of 1993, I had gotten shingles (herpes zoster) from, what I believe, due to the shock of having been asked for a divorce that my body responded with shingles. I have learned that although a person has had chickenpox as a child, the virus can remain dormant in the person's body's muscles. My Dermatologist, who treated me for my shingles, asked me, "Have I had anything happen to me recently that was shocking or traumatic?" I, of course, did! I was going through a divorce, and my immune system was not strong enough to be able to tolerate the shock. My ex-husband had come by that Friday to try to see if we could get back together. I had stayed home from work that day, because I was really ill. My mother had come over to visit me. I do not have memory of that day, so what I share with you is what I was told by my mother what had happened. He showed up with some soup and wanted to talk. What was said? I do not remember! It has been erased from my memory. It was February 1, 1994, Monday, I went to work that morning, but I was still very ill. My boss asked me, "What are you doing here?" She had not expected to see me in the office. I worked as an administrative secretary. I told her, "I still did not feel very well but will work a little while." I left my office to head home at 10:00 a.m. and drove home myself. It is a miracle I made it home safely. I called my mother around 3:00 p.m. after I awoke from a nap. She came over and brought me dinner. She said, "I ate very well and even had a second helping." We were watching the evening news, when she realized, I was having a seizure. I, at that time, had never had a seizure before. She dialed 911 (around 6:30 p.m.) and spoke with an operator who told my mother that I would be kind of confused when I came out of the seizure. To just make sure I understood I was okay. The paramedics came fairly quickly. They asked me questions such as: Do I know my name? In which I answered, Dianna. Then they asked me, do I know who this lady was? Pointing to my mother. I answered, My mother. Then they asked me, do I know how old I am? I answered, "Seven years old." My mother just about went into shock, which she was pretty shaken up anyway. I was still looking wild eye and confused. The paramedics took me to the hospital in the ambulance. I kept pulling out the tubes they where trying to put in me. After I entered the Emergency Room , I recognized my sister, Dee Anne, and I still knew who my mother was. But by then my words were becoming mumbly and not making any since. They ran a CAT SCAN, and I was still fairly calm. By then my other sister, Dawn, had shown up and the time was around 11:00 p.m. to 11:30 p.m. was then given a Spinal Tap, and I went into another grand mal seizure around 1:00 a.m. On February 2, 1994, they took me up to the second floor. By then I was becoming very irritated. I kept wanting out of bed more and more. They were afraid I would hurt myself so they had to restrain my arms and legs. They wanted to do another KAT SCAN, and they really did not want to give me any medication to put me out, but they knew I would not lay still in the KAT machine unless they did. They gave me three different types of medication to knock me out, nothing worked. So they tried to do a KAT SCAN anyway. It took about six people to hold me down and finely the medicine took hold and they were able to take the test. The next day, the doctor decided I needed to be transported to another hospital and while in the ambulance, I came too. I remained very calm. I still really did not know where I was. I only recognized my mother and two sisters. That continued for two weeks. I was very sweet and very loving to anyone who came into my room. If my mother or sisters came to visit me and then left my room for only ten minutes and returned back to visit me, it was as though I saw them for the first time. I had a very, very short-term memory. In the next two weeks, they did another Spinal Tap, two MRIs, and an angio-gram. I lost coordination in my left hand and left leg slightly a few days before the two weeks were up. All this time I was having seizures. Some were grand mals but most were petite seizures. I went down to being totally paralyzed and had to be hand fed by a nurse. I do not have any memory of this time. I woke up on February 14, 1994, and I was in a hospital with my sister, Dee Anne, handing me all these different Valentine cards. I was really weak and groggy and my head was hurting extremely bad and it felt swollen. A doctor came in and introduced himself, and I was told that I had viral encephalitis. He said that is when your head swells and that is why it hurts right now, and they are trying to get the swelling to go down. I was scheduled to take speech, physical and occupational therapy. I had no memory of my life. I was given pictures of my apartment and what I looked like and I remember that I could not speak two words together. I knew something was terribly wrong, and I started to cry because I was afraid. My mother talked with me a while and told me that these people were here to help me and that helped me work with them. I had no memory of my life and I had to be told about being married before. I had known him since I was 15 years old and had no memory of him now. I only spoke one man's name while I was, what I call in a "walking coma" and that was Greg Mahl, the man whom I am now married to. While in my real slow state of not being able to carry on a conversation, I was made fun of and treated like I was dumb because I could not speak very fast and I searched for my words or spoke them backwards when I did speak, and I had a slur to my pronunciation. The hospital staff thought I could not understand them, so they spoke very freely right in front of me making snide remarks about my inability to talk well. But I was able to understand them fine. I was at John Muir Medical Center, so I tried to remember the name. If I remembered the word John, I would not be able to remember the word Muir and if I remembered the word Muir, I would forget the word John. I was not able to say them together. My mother brought me tablets of paper to write in for a journal. So I started to try to get my ability of speaking back by writing out my emotions on the paper. I was extremely slow in the beginning but started improving a little each day. I would stay up at night (I could not sleep very well in the hospital). started putting things together to help me remember someone's name or a certain subject that was being talked about. My mother brought me music to help me try to get some sleep at night. I had a headphone and listened to soft soothing music. I was very sensitive to noises and my head hurt extremely bad. The doctors did not give me any hope of being able to improve. They told my mother that I may never regain any memory or ability again. That you may want to put her in an institution to be taken care of. They even had a meeting about my progress in which I was to be included but was not. They met with my mother and two sisters. They had my mother look at different places to place me in, but my mother decided she will just take me home. The next morning I felt stronger and I was focused and had a mind set and goal set to get well and out of this place. I got up and made my bed and went to the nurses station and got a towel for my shower and went to the showers and continued to get ready for my day. The speech, physical and occupational therapy. I started to improve instantly. I improved so quickly that the doctors could not believe that I was the same person and I was released one day earlier than from what I was supposed to have been. I got to go home on March 3, 1994! Faith in God's grace in healing me. By His grace, I am alive and healing. I am not some sort of religious fanatic or nut. I am a spiritual person, and it is by my faith in God that I am able to share this message, and if He (God) is not included in my story, then please remove my story from your pages because if He is not able to be mentioned or shared by my testimony, then I have no business in telling it. It is by the miracle of faith I am healing! Truth is what stands the test of experience. Albert Einstein Dianna California, U.S.A. Posted: March 1, 2001