ENCEPHALITIS CASES

Encephalitis Cases

Phil

I have had encephalitis twice; the last time was a little over four years ago. It is my hope that someone who reads this will be encouraged. I experienced deep dis-couragement and depression, yet just last month the doctor told me I was in good health. I am not an expert on encephalitis, I can only tell what happened to me after having encephalitis twice, once in 1986 and again in 1994. My message to you is simple. Hang in there. It does get better.

I'm a man, now 54 years old. A few years back when I was in my early thirties, life looked good. I had graduated from both, Moody Bible Institute in Chicago and from Boise State University in Boise, Idaho, and I was close to finishing a master's degree in secondary school administration. I had a good job as an electrician, had a exceptional wife, four tremendous kids and owned a large 3-level house.

After the death of our parents, we felt very little pull to stay in Boise where we had lived for most of our life. A couple of years latter found us in the Amazon jungles of Ecuador, South America, where I was supervising the electrical installations in a hospital being built out in the jungle. We spent two years in Ecuador. All of us, my wife and I and our four young children.

While in Ecuador, I applied and was accepted at Miss-ionary TECH Team in Longview, Texas. After finishing our work in Ecuador, we returned to Boise, Idaho to get ready to move to Texas. Little did I know that before we could move to Texas, my whole life would be turned upside down by a illness that I had never heard of Encephalitis.

In early February 1986, the flu was making the rounds in Boise, and even though I don't normally catch it, this time I did. The bout with the flu wasn't particularly significant except that about one week later I woke up with a headache. I almost went to work, but my wife persuaded me to stay home. As the day progressed I evidently became less and less responsive. My wife knew something was wrong, but I refused to go to the doctor or hospital. Late that afternoon my wife called an ambulance and off to the hospital I went. By that night I was in a coma. The next day they told my wife I was suffering from viral encephalitis. For the next few days my condition deteriorated. On the second day, after a number of tests, they told my wife that there was about a 1/3 chance that I would die, about a 1/3 chance of being permanently brain damaged or paralyzed or both, and about a 1/3 chance of "some recovery". They never gave her much hope for a full recovery. They also indicated that if I did recover it could take months, perhaps years.

It would be difficult to tell my story without reporting how my faith and the faith of my extraordinary wife, Linda, was part of our experience with two severe cases of encephalitis. My wife deeply loved her husband and after hearing what the doctor said, she was devastated. Within a few minutes after the doctors had talked to my wife, a family friend came in the hospital room to visit Linda. They prayed for my recovery and our friend prayed that Linda would have the strength to go through the trials ahead. My wife vividly remembers that after our friend prayed she experienced a deep sense of peace. That peace sustained her throughout my recovery.

For the next couple of days there was little change in my condition. I was literally being kept alive by machines, wires, and tubes. I had several IV's, was on a breathing machine, feeding machine, heart monitor, a "Foley", and who knows what else. On the sixth day of being in a coma, I woke up rather abruptly. I can remember looking around and realizing that I was in a hospital. I wondered why I was there and why I was connected to all those machines. A nurse came in and was surprised when she saw me awake, looking around, and moving. Soon Linda came in and in a very calm way explained what had taken place and why I was in the hospital. I will never be able to convey how my wife encouraged me at that critical point in my life. She explained what encephalitis was, and then went on to say that everything was going to be okay. Her calmness was deeply reassuring and I accepted what she said. At that point I did not worry about my recovery.

I don't remember much from the week after I woke up. My mind was still not functioning very well. My co-ordination and balance were very poor and I couldn't walk without help. I also remember being strapped in a chair, and needing to go to the bathroom. I was supposed to call for help, but I decided that I didn't need a nurse to help me. I somehow managed to get out of the restraints, hang on to my IV pole and shuffle and stumble into the bathroom where I successfully carried out my mission. I thought it was great progress but shortly afterward, I was chewed out rather soundly by both the nurse and my wife.

The next week I was transferred to a physical rehab-ilitation hospital to learn to walk again. Even before my rehabilitation started, I got out of the wheel chair and walked down the hall with only a cane. The next day I stopped using the cane and walked to the dining room by myself without help. Nobody ever told me what I could or couldn't do I just tried to stay ahead of them. In another week I was allowed to go home, but had to keep coming back to the rehab hospital as an outpatient.

The doctor did not say anything about when I should go back to work, so after a couple of weeks at home I figured it was time to get on with life and start preparing for a move to Longview, Texas. I went back to work as an electrician. I worked less than a week and it started becoming painfully obvious that my mind was simply not what it had been. I would work for two or three hours, and my mind would simply stop functioning. I simply couldn't think. I had to come home by noon. This pattern repeated itself for three days in a row, and the work I was doing would have to be redone by someone else. By the end of the first week I was laid-off.

By this time, it was beginning to sink in just how serious my sickness had been. The following days were the darkest of my life. I went from depression to deep despair. I was brain damaged. I could no longer work, support my wife and children or be any good for any-thing and the future that I was looking forward to was apparently gone. I cannot describe the mental anguish I went through in those dark days. I tried to put up a good front but inside I was in anguish and I couldn't talk to anyone, not to my wife, or anyone else.

In the meantime there were bills still coming in and we also had the normal living expenses. I got another job as an electrician, worked another week and was fired again. Seven months after I came down with encephalitis, we were on our way to Texas. Also because of the gen-erosity of friends and family, by the time we moved to Texas, all our medical bills were paid in full.

It is my feeling that, with time, I made about a ninety five percent recovery. I forced myself to use my mind. I would get tired easy but I was able to adjust by varying my schedule and not trying to do to much when I was having a "bad" day.

Considering everything, the work at Missionary TECH team went quite well. I was doing a number of different things. I supervised the installation of some heavy electrical equipment, did some electrical design, and represented TECH Team at several different colleges. I was traveling and enjoying it. However, I was also getting restless, and two years later, when I was asked to become the director of a non-profit work in southeast Oklahoma, I accepted. My reasoning ability was not what it had been prior to my sickness and it just didn't work out. Two years later I was asked to step down.

I again was discouraged and depressed. However, in that period of time I had became friends with a Choctaw Indian man who had at one time been a multi-millionaire and the owner and president of a Fortune 500 company. As our friendship grew, he encouraged me to seriously start thinking about a ministry working with alcoholics and other drug addicts. At first I resisted, but we did visit several recovery centers and then began to put together plans for a recovery center. It was stressful and not easy, but there were good results and it was a very rewarding work.

In September 1994, I had agreed to help the state mental health department distribute some literature on drug addictions near an area where they were giving flu shots. I had never gotten a flu shot before and I wondered if I should get one. I talked to the individual in charge and told him that I had had encephalitis. I was assured that was no problem and that it would be completely safe for me to get a shot. I had also been assured by the doctors in the hospital that I would never get encephalitis again. I decided to go ahead and get the shot.

Again my life was about to be turned upside down again by a illness, that doctors had assured me that I would never get again. A week after getting the shot we had some friends over for the evening and I began developing a splitting headache. Again that is the last thing I re-member for about the next week or so. The next day I was again unresponsive, and my wife recognized the same Symptoms that I had nine years ago. I again was diagnosed with viral encephalitis. That night in the emergency room I became quite combative. I am told that I tried to hit a 5' 3" woman doctor and also one of the nurses. They kept a security guard with me all night long. They gave me large doses of sedatives, but evidently none of it worked and I continued to be com-bative. I have no recollection of any of this. By morning I quieted down but then stopped breathing. The hospital announced "code blue" and they were able to resuscitate me. After this I was flown by helicopter to a larger hospital in Tulsa OK.

This time I was in a lighter coma than the first time, but I was kept heavily sedated for about a week. When they would ease off the sedation, I would become restless and difficult to handle.

About a week after being in the hospital, when they eased off the sedatives, I was able to respond and look around me. Again, I saw all the machines, the wires and the tubes. Unable to talk because of the tubes in my mouth, I looked at my wife who was by my side, and she again calmly explained that I had encephalitis.

The first time I had encephalitis I did not actually feel very sick when I came out of the coma. This time I was very nauseated and sick. When I opened my eyes I would get very dizzy. When I closed my eyes I would hallucinate. I can remember seeing wires, plumbing fixtures, and furniture flying through the air. I was sick and I couldn't open or close my eyes. As I lay there I remembered recovering from the first bout of encephalitis and I did not want to go through that again. I can remember praying that god would go ahead and take me. I simply could not go through this again. As the days passed, the sickness eased and I became stronger and more alert.

Shortly after I woke up, I gave my wife and nurses a real scare. I was on a breathing machine with the tube down my throat. When I turned my head the tube would clog and I could not breathe. Even though my arms were tied down, I was able to barely get my finger around the breathing tube and pull it out. My wife immediately yelled for the nurses. I, however, was breathing just fine. I can remember the rush of relief that I felt at being able to freely breathe again. Since I was doing fine without it, they did not put it back again. I also remember the pleasure of talking again, even though it was difficult, even with the tube out.

The doctors never identified what kind of encephalitis I had, nor were they able to say how I got it or why I got it the second time. It may be coincidental that I got it the first time one week after having the flu and the second time it was one week after getting a flu shot. Some of the doctors vehemently denied that there was any con-nection. Others weren't so sure and said there very well could be a connection. I am not trying to suggest to others what they should do, but I will guarantee that this is one old boy that will never get another flu shot.

My long term recovery from the second bout of encephalitis seemed to go easier than the first time. However, three months after returning home, Clark our close friend unexpectedly passed away. I submitted my resignation not knowing what we would do next.

There seemed to be a number of different possibilities open to us, in various parts of the country. We joined the United Indian Missions, which is headquartered in Flagstaff Arizona. We are a very small church. Most are individuals who have had or are still having a difficult time in life. Some are recovering addicts, others have family problems, financial problems, and even mental problems. We encourage each other and they seem willing to put up with me.

I definitely have days that I just can't think very well. On some of the worst days it can feel like I am in a mental fog. I have learned that on those days I just don't try to do anything very heavy or any reading, studying or writing. If I get out and do some plain old hard physical work, I have learned that I can sometimes work the fog out of my brain. Most days my mind feels more or less "normal" and I am able to do a fairly normal days work. I can honestly say that I am satisfied and that most of the time, I am enjoying life even after two serious bouts of viral encephalitis.

Phil
Oklahoma, U.S.A.

Posted: July 1, 2000

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