Monday came; I called the Doctors office to make an appointment. Told them I wasn't feeling well, that perhaps I had a urinary track infection. They told me to come in. They did a urine test and found blood in my urine and put me on antibiotics. Due to my previous history of Stroke, I mentioned about the "weird experience" I had on Saturday. I told them that I "phased out" twice on the highway. Unfortunately I wasn't able to explain my experience clearly enough. Had I said I "blacked out", perhaps they would have checked more than my urine that day.

Tuesday through Thursday I called in sick. I felt like I had the flu. I was weak, headachy and light bothered me so much I had to darken the room. I made a follow-up appointment with the Doc that was covering for my regular family physician. My urine was okay. I told the Doc about the incident driving so he did an extensive exam, checking for possible stroke. He could find nothing that would indicate anything was wrong. I went home thinking that I was a bit of a hypochondriac, but relieved. Monday back to work. I worked in a small V.A. Clinic across from St. Thomas Hospital in Akron, Ohio. I worked the afternoon shift. More symptoms. I complained to my co-workers that I kept getting the date wrong, that I felt like I had lost a day. I was grouchy and irritable. A client was expected for an intake at five o'clock. He arrived, the interview began. I blacked out; then the next thing I remember happening was seeing my right hand in front of my face vibrating. The experience seemed to be in slow motion. I remember telling the client that I thought I was having a seizure, to go get help. At the same time I wondered how I knew that. I thought that I would fall and probably hurt myself. There was an absence of fear, I felt calm. I thought that perhaps I would fall in an undignified manor, and my next thought was who cares. I have told people that this moment was the closest thing to a death experience that I have felt. I wish I could go through life with the attitude that was in me at that time. At that moment all I remember was that I felt at peace. It was the absence of Fear that was remarkable; I felt safe and in God's hands, at least part of me anyway......

My co-workers verified that I did tell the client that I thought I was having a seizure to go get help. I did in fact fall and really hurt my shoulder. I also did not land in a particularly dignified manor. Peaceful?? They told me I wasn't exactly Peaceful!! When the Paramedics got to the site I was highly combative. They said that I was trying to punch the paramedics. Apparently I didn't like getting strapped down. So much for my peaceful state of mind. (Grin)

My family and co-workers have filled in a lot of the blanks. They told me that I was transported to the hospital across the street. My family said I was "out" I am not sure if they called it a Coma or not. My temperature was 105. Several hours went by. When I "came to" I was delirious, "in and out". My one son said I was very thirsty, disorientated and argumentative. The first thing on the agenda was that they needed to rule out another bleed (stroke). I only remember bits and pieces of time. I remember conversations with family and co-workers. I was joking with them about doing my work from the bed using my supervisors lap top computer. The weird thing is that I could not see anyone. No color, everything was foggy and gray. My daughter told me that they were going to send me home, which was fine with me. The scary part is that I was in no way ready to go home...so much for managed care. They had gotten me to sit up according to my daughter, to help make me more comfortable. The nurse had left my daughter alone with me and she was holding my IV bag, when I told her: "Oh no! It's happening again!" I saw my hand vibrating and I went into my second complex seizure. Infectious Control was called to rule out Bacterial infection. A Neurologist was called. They admitted me to the ICU. Batteries of tests were done. MRI, Spinal tap and later the next day I was given a CT Scan. I was "out of it" for most of "it", with the exception of the Spinal tap. The pain of the Spinal tap made me conscious and I remember telling them to numb me out more, then I drifted back into blessed oblivion. The Medical staff told my family that I had viral meningitis/encephalitis. They ruled out the herpes encephalitis, no check for mosquito (arbor borne) encephalitis was done. I later requested that test and it was negative. We were informed that it was too early in the season for arbor borne infections. I told them about the horse fly bite, and was told that you could not get encephalitis from horse fly bites. I was put on Acyclovir IV for 14 days. I chose to go home half way through the treatments. The Visiting Nurses came and helped with the infusions. It worked and I got better. The other drug that I was put on was Dilantin, but I but was taken off of that, as I was allergic to that medicine. I have not had any more seizures, and I am not on any current medicine for seizures.

The only thing that makes sense to me is that I may have had a major allergic reaction to the horse fly bite and that may have caused the encephalitis. At this point it is no longer important how or why. In the beginning of my recovery I was obsessed with trying to find the cause. I was full of Fear; somehow it seemed logical that if the cause were identified I would be able to protect myself.

With time on my hands I went to the Internet looking for answers and found the NEF site. That is where I was found some answers. They had a listserve at the time where you could ask questions, vent and just connect with other folks that had survived or were caregivers to those with this disease. This is where I met Daniel. He was so helpful. It is so important for us to use our brains. He was one who encouraged me to play computer games to help stimulate the brain. Writing and re-writing this story has been very therapeutic for me. The NEF site is down, but Daniel is still around and now Ingrid has started up a place where folks can go to ask questions, vent and get support.