Rewiring the System


How Do I Cope?

Posted in Uncategorized by rewiringangel on July 8, 2009
Tags: , , , , ,

Jason’s story sparked how Ilsa has coped with debilitating head injury.

Love One Another is the Key!

For some creepy reason I seem to attract terribly controlling totally self-involved people who are incapable of caring either for themselves or another. It was true back in the 1980’s and it is true now.

You can see Jason’s story on PBS show (Point of View), POV

Professionals label me as high achieving, yet I am terribly injured. I managed to pull myself out of the brain surgery trauma without a loving family support system of closeness, care, love and tender tending to fill the space that I no longer have. My mother never came to visit and none of my family sent a card or a helping hand.  My friends at that time actually said right to my face that I was no different from before my time in the hospital.  These same people who never, not once, visited me while I was flat on my back. One of my redhead friends from my teen years came and held my hand every day. He never talked and I was incapable of conversation.  I wish I could remember his name today.  He worked at the first computer, which functioned on cards and had rooms of refrigerated storage boxes.  I send him, from my heart, my real heartfelt gratitude.

I believe that my years of meditation supported a natural internal strength enabling me reclaim my life.  However, this deep loneliness and feeling of helplessness with no one to hold me or surround me with human loving changed me and toughened me on the outside.  I long for real love both to receive and to give now that I am able to share the story of my physical, mental and most deep emotional scar.

How did I do it? All I can say is I put one toe out and then placed my foot on the floor and struggled to walk to meet the life that was possible.
Today, I went out to dinner with a woman from my apartment building.  We met when we each sat at the same New Years Eve party table.  We found that we have a warm heart, general kindness with the ability to really listen to one another and ethical kindness in common. Is this kindness an effect of having lived in NYC? She is more a city rat than I am! I found that I had trouble completing thoughts about minutia.

Life’s limitations occupy my mind more than usual after seeing the Point of View PBS television show.

It is amazing how little respect I get for climbing out of the vegetative state where I fogged for years after being released from the hospital. Dan, one of my students at the parkway program high school took a picture of me in Intensive care. He was there taking pictures the time I actually died and left my body… I am ready to ask him if he has copies of that moment or those pictures. Fluttering, without a body, in the right corner of the hospital room, I watched while doctors and intensive care nurses somehow pulled me back into life.  My wonderful surgeon Leonard Bruno saved my life initially.  Thank You Lenny! I did get to enjoy the Milky Way stars and feel the deep indigo of formless consciousness. Space flight seems to stick in my memory.  It was almost a month in a private room with round the clock nurses. I endured 40 spinal taps.  The Neurologist asked me if I was a misogynist!  What the F#@*k, I thought, here I am unable to walk much or keep down food and I am accused of some neurotic response to the painful spinal tap done by a student instead of kindness and understanding. That student Dr. missed the spine and nailed me in the back and I am called names.  It was such an offensive conversation that I actually remember the blond head neurologist tossing me her venom in my altered state.  Was it a surprise that I did not want her medical care when I got out of the hospital?  I was throwing up after I ate most foods.  What was she thinking?

I did not have friendly faces of people who loved me sitting by my side during the jiggling jellied hours of semi conscious fog as almost alive bag of chemicals trying to climb out of this crash all alone.  Three of my students, Cloudia, Claudia and Dan, from the high school came and gifted me, but their attentions highlighted how really alone I was for endless months of looking blankly at a color TV placed12 inches from my nose.  This was the time before a hand held channel changer.   In 1980, you actually had to move to get a channel other than the info entertainment parading as news or the price is right. I do not remember much of the first two years. Around my first year anniversary, I was driven to Lord and Taylor store on the Main Line to purchase a new nightgown.  This was my treat.  Soon after that, I started to relearn how to walk and talk.  The wooden bars at the height of my armpits really made an impression on my dazed consciousness. I remember as well as that specialist doctors’ maroon and indigo bow ties.

So here, I am today and people have no idea of how much I have to exert to get dressed in the morning.  How hard it is for me to converse since I miss some things and get more information on other things.

The Jason movie this evening really rocked my psyche.

I am a shining example of healing from what might have been a tragic situation with me strapped in a chair drooling.  It was the unpleasantness and discomfort of the bedpan, which made me throw myself out of bed and crawl to the toilet for more than 9 months.

Tonight I was recalling that in the last four years I have had four concussions, which, compounded on the brain surgery have made life a struggle.  I still laugh a lot.

So many people have had an auto accident that joggled their brains and concussions from sports or a fall.  Head injuries are on the rise and they are always a struggle since they are the unseen disability. My left frontal quadrant is empty. Gone are the linear learning and sense of style and aspects of human being.

Yet my right side of my brain is just fine!

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