Rehab

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.

Most people, when things are not perfect, would love for a change to take place. Unfortunately for many of us, the changes are minimal to the point of appearing non-existent.  In French we use the expression”faire du surplace” – moving without creating any change.

It is in that spirit – and that of the film L’Amour à Mort (Love Unto Death) by Resnais – that I hope to write a short text to be called On n’en revient pas (a French expression meaning both “from there one does not come back,” and “hard to believe”).

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

 

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.