Gaps In Time

I opened my eyes after a coma, but I didn't talk or move. Almost 16 years later I write this. That's a big gap. When did I wake? Fortunately, or unfortunately, because of the government I haven't woken up yet.

Now you need to know what happened just prior to my long (eyes-open) coma. I had been in a deep asleep (eyes-closed) coma for over a month. Initially my GCS was 3. This is the Glasgow Coma Score and the lowest you can get while still being alive. I was still hemorrhaging when I got to the trauma center. They only stopped the bleeding. I was not expected to live.

The trauma center is the third hospital I was taken to on my eventful day. I first went to my town clinic. It is not a hospital, but it was the closest medical facility. I stopped breathing there. They intubated me and put me on an ambulance to the hospital. This took a couple hours just to drive to. That second hospital immediately put me on a helicopter to a trauma center. I was not breathing on my own. I was intubated and on a respirator for the entire ambulance ride. It was amazing that I wasn't dead yet. The trauma center was the third hospital. They did the initial surgery to stop the hemorrhaging. They only stabilized me. No brain repair was done here. That is not their job.

I moved again to another hospital for opening my eyes. This was the rehab. It is attached to a large hospital. Very few rehab centers are like that.

After opening my eyes, technically just one eye, I was made PVS. This stands for Persistent Vegetative State. No one had ever recovered from this state, but it was thought to be possible. Those who have previously recovered from a coma but became unresponsive were most likely made MCS, or Minimally Conscious State. Their responsiveness was very minor and barely picked up.

I moved a few times in my long stay. My placement was actually changed while I was having surgery at an unrelated hospital!

My diagnosis was changed to "Semi-Vegetative" two years after my bleed when I had surgery. I had brain surgery at Stanford University and Hospital. They even argued I was not vegetative. (I most likely was not vegetative and should have been changed to MCS.)

"Semi-Vegetative" has felt more like MCS. The term "Semi-Vegetative" is not in the usual diagnosing manual. I had to ask a friend what it was.

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I had been experiencing gaps in time.

Click

I'm glad I wrote this down. It's a note on Facebook. I used to have gaps of missing time. People around me didn't. Staring off into space for longer than a moment gets noticed.

In the hospital, the first after opening my eyes, I would stare for days, weeks even. When I went to a nursing home, (Yes I moved again.) staring was for a few hours. I remember that they took me to a hospital for an evaluation for seizures.  It was determined that I wasn't having any.

Staring off into space became less and less and I moved a few more times. This is when I had that surgery- AVM removal and neural repair. The surgeon explained that effects wouldn't be noticed immediately.

Staring must have appeared as daydreaming by the time I came home. Like the neurosurgeon said, effects wouldn't be noticed immediately.

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 The man speaking (the younger man) was initially staring. Under advice from a Music Therapist
his father put music on. The man starts speaking.
You see the father wipe away a tear.

I received Music Therapy at the last hospital I was at during my long stay. It wasn't offered at any of the other places I went. The effects have never been investigated. That movie clip is based on a story the late neurologist, Oliver Sack's wrote. This man had a brain tumor. The effects can be close to the AVM I had in my head. There is a very possible link here.
 

     I am with the Music Therapist.

It is this Music Therapist who encouraged me to write my first e-mail. This in turn led to the writing that you see today.

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My getting better is just another gap in time. The time from surgery to now when I write this was never tracked. Ask, "What happened Stanford?" because the surgery was them. Tracking was the government's job. (Here's another gap. You Only Had One Job) Everyone washed their hands from it. I'm the only one who tracks with these notes, and I am brain injured. (Shame on somebody.)