Words, images and sounds are ridiculously inadequate for conveying certain experiences.
So far, I have managed to write down only one such “hell” but the link between ICU and delirium is unfortunately much too common.
This recent article in the NYTimes describes how unhealthy it is to go “there” – and how preventable it could be. Do read the many comments following the article.
We’re not in Kansas anymore…
The weeks spent in I.C.U. were like an eternity in hell (more in another entry).
Later in rehab I was shown “Encounters at the End of the World,” Werner Herzog’s masterpiece. To my amazement, it was as if someone was describing the universe I had barely escaped from.
Just like those divers going through massive layers of ice with only one hole to come back to the surface,
while it had been all about life or death, there had been absolutely no road map.
I had been submerged too and was still gasping for air.
I speak of this elsewhere, but it was clear from the ICU on that what was considered normal was a complete aberration. Being surrounded in rehab by many brain surgery survivors who could only mutter vague sounds to express themselves, regular activities like speaking, holding a pen or defecating have to be considered miracles, amazing victories!
Nothing can be taken for granted.
We are born disabled, and most of our lives are probably disabled in one way or another (but deny it)… and we will most likely die disabled.
Another one of those “beams in the eye” – so prevalent it is one more omnipresent blind spot.
With life having slowed down in a major way – did I know whether I would EVER leave ICU, “eternity” appears like a daily occurrence.
A particular bird’s-eye view cannot be avoided – all of the tohu-bohu of daily activity, whether it is the curtains that are drawn across the way in the ICU (I assume from the movement of people that someone has just died), or on the other hand, their busyness, people can easily be summarized in this way:
- The Dead
- The Living
- The Kind
- The Unkind
People Simplified ©Marton 2012
Copyright Alma M. 2008
I was probably already in the ICU unit but in my head it was as if before surgery someone had asked me some questions and I had answered that I spoke French and their response had been that they had always wanted to learn French and so a French brain was great for them. My next thought was that they were going to squeeze that out of me to get that useful skill. Plus, they seemed intrigued by “the Pataphysics knowledge” stored in there too.
In the intensive care unit for the almost three weeks I was there, most of the time I felt I was nobody: everybody that came to me seemed to shove more tubes into me… until one day another tube was shoved down my throat but then I found myself, to my surprise, saying “no!” I had barely spoken before and this major act of resistance became suddenly the beginning of my escaping the timelessness of the ICU.
The only time when I remember feeling a strong sense of myself was one time when I felt humiliated by trying to defecate in an almost open fashion while nurses were circling around me.
I remember someone dying across the way. People were surrounding the bed, then a curtain was drawn. Everybody was very quiet. There was that kind of quietness…
Copyright Alma M. 2008
I remember someone having been injured in Iraq. More, as soon as I can….
After my brain hemorrhage, I looked for websites to guide me along. Short of that rare meeting when I could compare notes with another survivor, there was no place on the web to consult. So… Brain Bleed!
To summarize, I went from “hell” (how inadequate a word!) through “wild rides” to a present and constant knowledge of what I call “the arrogance of normalcy” – in other words like with many other disabilities, I am not “normal” but most people are unaware of that.
So while I am neither a doctor nor a health professional (PLEASE do consult them if you are looking for more than just support – this blog nor its participants are liable for any misinformation), I am starting this site because “someone needs to do this.” This site may re-appear in a different format at a later point.
As the creator of “Brain Bleed” I reserve the right to edit or block any contribution/contributor that I deem not to be contributing to a supportive environment. Disagreement is allowed but, please no flaming, rants or insults. Yes there is uneven care out there but this is not the place to bad-mouth any medical staff.
Below is a mind map I created that may guide me along as I create, time permitting, the various categories to help us all navigate better this rough terrain.
Brain Bleed/Hemorrhage Mind Map ©Marton 2011
Please feel free to comment so I can tweak the mind-map to reflect the community of brain bleed survivors.