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Posted September 22, 2003

Steve's Story

 

A recent front page story as posted in the Arizona Daily Sun, July 26th, 2003. Click the following link to see the story (unfortunately AZ Daily Sun wants payment for this, but I have included the details in this rendition) Be sure to use the "BACK" button to return to this page:

Moving experience nearly fatal

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

I fell gravely ill January 6th, having been ill for several days before the situation became acute. Before then, the day previous, resting on the couch, having pangs of nausea throughout the day, I was acting strangely. Attempting to change the water in my bird's cage which was a habitual task done each day, I simply poured it on the floor, amazing my wife. 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, and a plant light 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 and numb, 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-- 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 before she left. 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, for 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 in that odd state of mind. I saw my brain against a brilliant field of pink, being "worked on" by someone with medical tools of some kind. It was very strange, 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 as the people sitting changed,each time I looked at the cat, its head would seem to 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, and 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. In a coma, unable to see, and not having my glasses at the hospital, yet 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--" said my brother, Carl, "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. There was 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, I wondered, 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 thought that I had a grand mal stroke; I recalled the admitting doctor saying so 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 my family that it would be best at that juncture to perform a brain biopsy on the left side of my brain, but the hospital needed permission to perform it. He then explained briefly what the proceedure 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 by me 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, my awareness was better than it is now, or ever before.

I am dying I thought. What now?

Then a the most 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, 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. It could have been inspired by a scene, perhaps that I had once seen in a movie previous to this.

"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. In the center as this circle of color and light expanded 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 were rays of light, gold and silver streaming out. And there was a figure there, standing there in that doorway, approaching me.

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

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 in that instant, I had no idea from where I had come or what had brought me there. Everything about this life was forgotten. This state of mind 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 like 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 and sounds had persised for nearly 20 days after. ( I was told recently by the a physician that this could be related to a dopamine imbalance caused by the brain trauma that I had sustained. ) But during the initial period of recovery it was a strange, weird time, and for two weeks I did not sleep a moment, even with doses of morphine as my left brain was "buzzing" constantly. My consciousness after this was totally altered; staring out of my window for hours, I could be completely occupied. Even TV was too weird at first, as I did not understand what I was seeing. And during this time, it was frustrating not being able to speak, nor read, nor read a clock, walk, or relate anything to anyone of things that I had experienced while I was gone in that coma state. I had to re-learn, or re-discover all the things that made me the person that I am.

But, having come out of the coma surprised the neurosurgeons-- Because of the severity of the brain swelling that I had sustained. At first I was in a vegetative state that they predicted would be my fate if I came back. And determined that that would not be my fate, it was a struggle to regain what I had lost.

But I had seen Jesus. Remembering 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.

Having emerged from the coma state I was in a hospital for a lenght of time that depended on my recovery. Initially my prognosis for recovery did not look good. Though not sure as to what was going on around me, I knew that my right side was gone, and I could not use it. And my left-brain was in limbo, not able to process anything. But I was acutely aware that something very serious 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 previously. Probing my thought processes, things began to come back. Not able to talk until near two weeks after my admission, and only in very broken sentences, eventually, my linguistic skills returned, but only in broken sentences. Many times words would not come to me, even though I knew what I wanted to say. In post op tests I found to my dismay that math, and other math related skills were pretty much gone, too.

But all the while, 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, the first task for me was to move my thumb and big toe. And 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 wiht hours of hard work each day I pushed 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 to the point of exhaustion. The exercises that they put me through were excruciating and painful to my right side. But I pressed on. Everyone that saw me were astonished; coming back from what was at first a vegetative state, in the process of regaining my right side, and beginning to speak. 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. My right side also is very cold and this I am told might be a residual effect of damage to the left brain. And I have given much thought regarding what I experienced, 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.

What caused this condition that almost killed me?

ADEM (Acute Disseminating Encephalomyelitus); a rare disease. I was told the ones that survive it are young, usually 5 to 7 years of age, with just a few in my 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 massively involved. (Believe me, I know what it is like to have "half a brain") No one knows exactly what cases this rare disease. It could have been a spider bite, ticks, or even a flea bite transmitting a virus or bacteria that then sparks an auto-immune reaction, which in turn demyelenates the brain. 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 previous functions as they were prior to this condition.

As for me, the neurosurgeons had cut a 5.5-inch slit in my head to get a portion of my brain for analysis. The scar remains to this day, with a very deep dent in the left frontal portion of my head caused by a trepan 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 this operation, but considering my condition, the doctors had no other option to find a course of treatment. The brain samples were then sent to the University of Kentucky, Chandler Medical Center, a world renouned neurologigal pathology lab, and consultations were made with staff at Barrows in Phoenix, Arizona, as well as other neurologists, and with the noted symptoms, the conclusion was ADEM, affecting the entire left hemisphere of my brain, including the brainstem.*

It amazes me that so many specialists were invoved in my case. But 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 now on disability, there is a way for me to go in the recovery process, and it will take time. My cognitive ability remains mostly intact, but with some deficits. And there are physical problems as well, mostly on my right side. And the most annoying thing for me is that I can no longer drive. All of this aside, 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 and two weeks. 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

See the actual slides of my brain through my microscope, and very interesting links regarding demyelenation, and what neurologists have discovered about it.

Slides

 

Postscript Addendum 04/06/04

On the evening of March 24th while out on a meteorite recovery trip, I suffered a major series of seizures "status epilepticus" lasting 30 to 40 minutes. I believe this to be due to Lamictal, and or the initial trauma.

SEIZURE

 

Postscript Addendum 12/18/03

2003 has proved to be especially hard for me and my family. In addition to the impact of this near fatal illness on me, my dear mother died as a result of cancer on November 30th, 2003, after having suffered with it for four years. Click the following link to see her and my eulogy to her given at the Scandinavian Mariner's Lutheran Church in San Pedro, CA on December 13th, 2003. Being that I am disabled, and in recovery, it was very difficult for me to speak to all those gathered that day.:

Eulogy to my dear mother.

* 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.