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Posted September 22, 2003

Steve's Story

The initial onset of the illness is even now a muddle in my mind, but here is what happened, as best as I can recollect:

 A recent front page story as posted in the Arizona Daily Sun, July 26th, 2003,

Moving experience nearly fatal

 I fell gravely ill January 6th, having been ill for several days before the situation became acute. Before then, the day previous, and resting on the couch, and having pangs of nausea throughout the day, and acting strangely, according to my wife, when I attempted to change the water in my bird's cage, I simply poured it on the floor. Returning to rest, sleeping fitfully through rest of the day and that night on the couch, the next day things for me really got out of hand. My wife had gone to work that morning, leaving me alone. One of the plant lights came on in the adjacent room. Wanting to turn it off and getting up to up to do so, I then noticed that my right side was going limp, but still not completely gone. Dragging my right foot all the way, when I got to the light, I could not turn it off. It made no sense, to solve it-- Shutting a light down, it did not make sense. The options of pulling the plug, hitting the switch, or unscrewing the bulb did not even cross my mind. But there it was, on and blinding... I could not figure it out. Something was very, very wrong, yet I could not figure out what it was. Speaking my dilemma out loud, what I did say was gibberish, the words did not make any sense at all.

My wife, having gone to work that morning, wondered what was wrong with me, for she noticed me acting strangely. And when she returned late that morning, she found the living room in disarray as well as me in a bad state. She decided that it would be best to take me to the hospital. Somehow she got me dressed for I had discarded most of my clothes in my delirium. How she got me to the car I cannot remember, as my entire right side was numb, and I could barely walk. The motion of the car, and being upright caused me to dry heave all the way. And if that was not bad enough, at the hospital the real nightmare began... The condition was rapidly getting worse and I was beginning to lose consciousness. After two MRI's, after the last one, the lights went out as I lapsed into a coma.

I saw a number of very strange things, my brain against a brilliant field of pink, being "worked on" by someone with medical tools of some kind. A very strange vision and I tried to turn my attention toward the sounds to see who was working, but they vanished and the sounds stopped. Then there was a weird scene of people I had known through out my life, sitting in an armchair petting a cat I once owned. Different people in the same chair petting the same cat. And each time the person changed, and each time I looked at the cat and its head would seem to split open and brilliant rays of light would emerge from between the eyes. During all of this there was no pain, or any sense of fear. Then, a most amazing thing happened... My folks, my father, brother, wife and a doctor were there together in the hospital ICU room. It was as if I had been awakened and suddenly made aware of what was happening. Yet I was still in a coma. It was as if I was floating over my bed. Now, what makes this so strange is that I wear very thick glasses, so thick that I cannot see with out them. Deep in a coma, unable to see, and not having my glasses at the hospital, I saw my folks clearly, better than I have ever seen them before.

My brother was arguing very vehemently with the neurosurgeon, with my stepfather and my family standing beside him. "I just want to say; my brother, he is a fighter and I can see that he is fighting this. I can see it in his eyes."

At the time, in the ICU hooked up to monitors, there were tubes and catheters coming out of my arms, and every opening in my body. With no idea or conception of my grave condition, as from my standpoint, it seemed to me that everything was okay. No pain, and no sense of what had happened, even then I had no idea that I was near death in a fetal position in my bed.

The doctor said to my brother, "I just want to give you a warning... Do not get your hopes up too high, for a person in Steve's condition usually does not come back. And if so, they are quite disabled after."

Hearing and seeing all of this clearly, and wondering, for at the time, everything seemed okay, and I was in a serene, peaceful state of mind.

Then in that instant, after hearing what the neurosurgeon had said I realized that what had happened to me was serious. At first the doctors though that I had a grand mal stroke; I recalled the admitting doctor saying that as he was examining me for an MRI. Then with all the tests after my initial admission to the hospital, they could not figure out what had affected me so profoundly. But in this "out of body experience" I then heard the neurosurgeon advise that it would be best at that juncture to perform a brain biopsy on the left side of my brain, and that he and the hospital needed permission to perform it. He then explained briefly what that would entail, and that it was a dangerous operation, but one that under the circumstances was needed in order to further my treatment, if any such treatment was possible. (I was dying and they needed to know why. They had not determined what was threatening my life, and they had no treatment plan other than to stabilize me with blood thinners and steroids. They thought that it might have been a brain tumor, or some strange pathogen, but at that moment they had ruled out a grand mal stroke.)

All of this was seen clearly, better than anything that I would normally see if I were in my body with my very bad eyesight.

And I thought I am dying… That is it. But there was no pain, no feeling of being ill, nor any decrease in my awareness of self. In fact, though it may seem strange, my awareness was better than it is now, or ever before.

I am dying I thought. What now?

Then an amazing thing happened.

Everything went gray and there was a hissing sound, like what one would hear from a TV that is off channel. And suddenly, I found myself in a scene, the crucifixion scene. There before me was Jesus on the cross, and all around in this scene, with the sky dark, were people standing around, frozen in motion. Everything was static, not moving at all, not a sound, and I was there, in their midst, looking at the Cross. The scene was amazing, but not that spectacular. It could have been a scene, perhaps that I had once seen in a movie.

"This is where I need to be" I thought. "This is where I need to be, yes"

Then the hissing came back and the scene vanished, and everything went black; completely black

And there was this light, very bright off in the distance. But oddly it was not distant, and if I could reach up, I think I could have touched into it. It was like something opening up from another dimension. The edges of it were scintillating with rays of light, against rays of darkness that I was in. And the light inside was bright, full of colors; iridescent silver cast colors, and I wanted to look away it was so bright. And in the center as this circle of color and light became larger filling my field of view, there was a gold and silver light like rays coming from appeared to be a doorway of sorts. It was rough-hewn, like the edges of a cave, and from it rays of light, gold and silver streaming out. And there was a figure there, standing there, approaching me.

I wanted to look away, it was so bright, but I could not.

And then I saw,

It was Jesus!

He was looking right at me!

And I thought in that instant. "I am here."

Jesus spoke to me, not with words that came from His mouth, but I heard Him speak in my mind.

"I am sending you back."

That is all He said.

"Where?" I thought, for I had no idea from where I had come or what had brought me there. In that instant everything about this life was forgotten. It was very strange, but completely awesome. Myself, my awareness, but where I had come from, and what had brought me there was completely gone from my memory!

Then, after having visions of my brain being worked on, I emerged from the coma. And oddly in recovery I had this persistent vision of my brain against a pink field being worked on, with the sounds of medical tools filling my mind. Later, when I could speak, I mentioned it to my brother, the weirdness of it for I had had this experience for 20 days after coming out of the coma. My brother pointed out that surgery done had been done, but could not explain why my vison had persised for nearly 20 days after. But during the initial period of recovery it was a strange emergence, and for two weeks I did not sleep a moment, even with doses of morphine as my left brain was "buzzing" constantly. My consciousness was totally altered; staring out of my window for hours, I could be perfectly occupied. Even TV was too weird at first, as I did not understand what I was seeing. And during this time, not able to speak, nor read, nor understand a clock, walk, or relate anything to anyone of things that I had experienced while I was gone in that coma state was a frustrating time. I had to re-learn, or re-discover all the things that made me the person that I am.

Having come out of the coma surprised the neurosurgeons, because of the severity of the brain swelling that I had sustained. Emerging, at first in the vegetative state that they predicted would be my fate if I came back it was a struggle to regain what I had lost.

But I had seen Jesus. Remembered the brief experience clearly, he sent me back, but He did not tell me why. And though I was confused between where I had been and where I was in the hospital, there was a certainty in my mind that He would not send me back to be sitting in a wheel chair for the rest of my life, looking vacantly out a window.

Initially my prognosis did not look good... Unexpectedly, and to the surprise of the doctors, I came out of the coma after 5 days, and gradually emerged from it over the next 2 days. But not knowing where I was or what was going on around me, my right side was gone, could not use it. And my left-brain was in limbo, not able to process anything. It soon became evident that I was in a hospital. With nurses attending me it came to me that something had happened. With my right side limp and gone, and the weird focus of my left-brain, the world was different than what I had experienced. Probing my thought processes, things began to come back. Not able to talk until near two weeks after, and only in very broken sentences, eventually, my linguistic skills returned, but but in broken sentences. And many times words words would not come to me. Math, and other math related skills were pretty much gone, too.

I was determined to get control of my right side even though I did not even feel it. Working very hard to demonstrate that I was coming back, first by moving my thumb and big toe, all the while struggling to regain my ability to speak. After I got my finger and toe to move demonstrating it to the doctors and nurses, I was transferred to the Rehabilitation Unit. And with that, hours of hard work each day pushing myself to regain what I had lost. Knowing that my physical condition would deteriorate if I did not put in the extra effort, like some of the other patients that had been there for many months, I pushed myself hard. Everyone that saw me were astonished; coming back from what was at first a vegetative state, and some of the first words out of me were in regards to what I had seen.

"You won't believe what I saw." I whispered, but it was difficult finding the words to say, and to hold it in my mind. Aphasic, unable to relate in words what I had seen, it was all like a dream, like a dream that one has and wants to remember, but forgets by the end of the day. But I held onto my experience for fear of forgetting. Eventually, I regained the use of my right side, but it feels strange, as at times it does not feel like it belongs to me. And much thought has transpired in my mind about what I experienced in this trying time, and I now wonder if all of the coma NDE's do not have similar experiences such as mine, but as the person regains normal consciousness, they as in a dream forget it.

What caused this condition that almost killed me?

ADEM (Acute Disseminating Encypalomylitus); a rare disease. I was told the ones that did survive were usually 5 to 7 years of age, with just a few in my 52 year age group emerging from an ADEM caused coma. ( I was told that I am among the oldest survivors). ADEM is a form of encephalitis with generalized swelling of the brain's white matter, cortex and brainstem *; in my case the left brain hemisphere was involved. (Believe me, I know what it is like to have "half a brain") No one knows exactly what cases it. It could have been a spider bite or an auto-immune reaction to a virus. In children it has been noted that it can be triggered by vaccinations. Once contracted there is no cure for the affliction, and those so affected usually wind up as vegetables or dead... very few that survive retain all of their functions.

The neurosurgeons had cut a 5.5-inch slit in my head to get a portion of my brain for analysis. The scar remains with a very deep dent in my skull from a drill to allow for a larger section of skull to be temporarily removed for the brain biopsy. Much of my current disability problems might be due to the severe brain swelling, as well as the operation, but considering my condition, the doctors had no choice. They had to know, but initially nothing specific was found... The brain sample was then sent to a leading neurology lab KY, and with the noted symptoms and what they learned from the sample, the conclusion was ADEM, which also involved the brainstem.* But they never identified exactly what caused this attack, but the MRI indicated lesions in my brainstem, and the white matter, but the cortex was not so affected.

Where am I now?

Coming back.

The neurosurgeons call me "The Encephalitis Miracle Man," for they have not encountered anyone that has come back from the state that I was in. Not having fully recovered, and am on disability, there is a way for me to go in the recovery process, and it will take time. And I wish to thank everyone close to me, my family and friends for having prayed for me in this very trying time, and those great doctors and nurses at the Flagstaff Medical Center, who cared for me over that month. I am a different person now, seeing things differently. It takes something like this to really change a person's perspective, and to give new meaning to a life that is all the more mysterious.

Steve Schoner

Flagstaff, AZ USA

* Notes from Med Help.com
Brainstem Encephalitis is also referred to as Bickerstaff-Cloake Encephalitis. It is usually characterized by subacute (days to several weeks) development in adolescents and young adults of brain stem dysfunction, including ophthalamoplegia (can't move eyes) Facial palsies, sensory loss, dysarthria (can't speak right), deafness, and ataxia, and is associated with mild fever and an increased white count in the CNS. This entity may represent a mixture of true viral infections, post infectious syndromes, and the initial manifestations of multiple sclerosis.