ICU

— As I have written elsewhere and will keep repeating, in spite of all appearances, “you’re on your own.”
The isolation of being in nature, or lost in ICUs can lead to a very similar wisdom —


Another way to be and to think — Une autre manière d’être et de penser

Claudie Hunzinger - Photo Françoise Saur

Claudie Hunzinger – © Françoise Saur

Claudie Hunzinger est écrivain et artiste. Elle vit en Alsace dans les montagnes des Vosges depuis 1964.
Wikipédia (en Français)

ENGLISH TRANSLATION BELOW

Interview sur Hors-Champs (France Culture)

Question (Laure Adler): Une dissolution?
Réponse (Claudie Hunzinger): C’est quelque chose comme ça la solitude. Il y a quelque chose d’infiniment merveilleux qui peut vous attirer très loin, qui est le fait qu’on se quitte soi-même. Quand on est seul, on perd son identité. On se déploie dans tout ce qui vous entoure, on devient ce qui vous entoure.
On peut devenir la maison si on est à l’intérieur, on se dilate et on prend toute la place; c’est un peu une expérience très “Alice,”
Et si on est à l’extérieur, on devient absolument ce qu’on voit. On devient l’air, on devient les forêts, on devient l’herbe, et c’est un sentiment très puissant, très reposant aussi.
L’élément humain… on devient un élément étranger, et quand je quitte la montagne et que je me retrouve à Paris, il me semble que j’entre dans l’élément humain, et que l’élément humain est un élément étranger. Que je suis, que j’appartiens à la montagne, que j’appartiens aux bêtes, que j’appartiens aux plantes, et que je me rétrécie que je rentre en moi-même et que je suis en face de ce micro…


Question
(Laure Adler): Quand vous dites que la montagne vous appartient, elle vous appartient sensoriellement? Elle vous a capturé?
Réponse (Claudie Hunzinger): Sensoriellement. J’en fais partie. C’est quelque chose qu’on sent, c’st quelque chose qu’on remarque. C’est un bien–être.

Le désir doit rester une fenêtre ouverte sur la nuit, sur sa foule d’étoiles.” La Survivance (2102)


Les Promesses Tenues de Claude Hunzinger –  © Françoise Saur

Claudie Hunzinger is a writer/artist who has been living in the mountains of Alsace since 1964.

Question (Laure Adler): A form of dissolving?
Answer (Claudie Hunzinger):  It is something like that, solitude. There is something infinitely marvelous that can draw you forth very far in the sense that one leaves oneself behind. When we are alone, we lose our identity. We spread out into everything that surrounds us, we become what surrounds us.
We can become a house if we are indoors. We blow up and take all of the space; it is a bit like an “Alice experience.”
And if one is outside, one becomes absolutely what one sees. We become the air, we become the forests, one becomes the grass, and it is such a powerful feeling, very relaxing too.
The human element… we become a foreign element, and what I become when I leave the mountain and I find myself in Paris, it seems that I enter the human element, and that the human element is a foreign element. That I am, that I belong to the mountain, that I belong to the animals, that I belong to the animals, and that I shrink and re-enter inside myself when I face this microphone…

Question (Laure Adler): When you say that the mountains belongs to you, do you mean that you do on a sensory level? It has taken over?
Answer (Claudie Hunzinger):  On a sensory level. I belong to it. It is something one feels, something one notices. A well-being.
Desire must remain a window open onto the night, with its multitude of stars” La Survivance (2102)

Brother David Steindl-Rast, A Network of Grateful Living (ANG*L) and his many books!

Br. Steindl-Rast, against solidification:
The religions start from mysticism. There is no other way to start a religion. But, I compare this to a volcano that gushes forth …and then …the magma flows down the sides of the mountain and cools off. And when it reaches the bottom, it’s just rocks. You’d never guess that there was fire in it. So after a couple of hundred years, or two thousand years or more, what was once alive is dead rock. Doctrine becomes doctrinaire. Morals become moralistic. Ritual becomes ritualistic. What do we do with it? We have to push through this crust and go to the fire that’s within it. — During Link TV’s Lunch With Bokara 2005 episode The Monk and the Rabbi.

CabbageSMLMarton

My cabbage by Pier Marton

Say No To Say Yes

I may have written about this earlier: this was a key moment in my “survival.”
I had tubes in my head, my nose, my throat, my stomach, where else I am not sure anymore… I had been more dead than alive. I could not speak… I could not write… my eyes seemed my only way to connect to the visitors. After being in the I.C.U. for what seemed like an eternity [beware of the myth of that neutral taste of eternity on the Jewish Shabbat -nobody had considered what eternity in hell could be like?!], as another tube was being inserted into me, this time into my throat, I came back to life by shouting a loud and clear: “NO!” –  As if this were a form of re-incarnation (re-entering my body), I came back to a certain sense of self by refusing that tube.
The nurse was shocked, I had been absolutely compliant before… I had surprised myself too.
Was this the same life force that Marceline Loridan-Ivens – who survived the concentrations camps – often speaks of?
Biology of the cells uniting?  Life must be?

My refusal corresponded to some re-investment of my body, and my need to control its boundaries.

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.

Illness, sickness, being “out” has
NO REDEEMING VALUE.

Trying to “be positive” about it
(to hide one’s fear?)
represents an indoctrination like any other.
– life is the way it is –

While one does know certain things because one has been punched by life – often by just plain stupidity – that knowledge amounts to being able to say:

“one can be punched hard by life or by stupidity.”

Christopher Hitchens’s take on the famous saying goes this way:

“Whatever doesn’t kill me makes me stronger.”

“Oh, really?” says Hitchens, “Take the case of the philosopher to whom that line is usually attributed, Friedrich Nietzsche, who lost his mind to what was probably syphilis. Or America’s homegrown philosopher Sidney Hook, who survived a stroke and wished he hadn’t.”
… it ends with “one can dispense with facile maxims that don’t live up to their apparent billing.”

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

    d

 

Copyright Alma M. 2008

Delirium #1
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.