BrainScience

None of this is a call for help, nor is it any kind of alarm.
It is just another reflection about a particular state.


While I can write, I write – there may be a time when writing is no longer available.
Am I trying to be ahead of my time? I remember thinking very clearly that “the true avant-garde is death” – that’s what I thought  in my twenties
This is not the topic here.


It has to do with the fact that there is a possibility that what one calls “brain fog” appears, and remains.
I had a few hours of it today & I wondered how thick it would get. And how persistent it would be.
But here I am, typing all of this down: the panic may not be warranted, but my concern is as thick as the isolation I found myself caught by.

It is not a matter of politeness.


Part of this thick haze consists of the distance between the medical words (the diagnostics) I hear, and the subtle yet concrete fluctuating sensations I am feeling.
All of this comes and goes, and I remain. For now.

To Dr. Michael Chicoine – May He Keep Saving Many More Lives!

From the New York Times

For The First Time, Treatment Helps Patients With Worst Kind of Stroke, Study Says

After three decades of failure, researchers have found a treatment that greatly improves the prognosis for people having the most severe and disabling strokes. By directly removing large blood clots blocking blood vessels in the brain, they can save brain tissue that would have otherwise died, enabling many to return to an independent life.

The study, published online Wednesday in The New England Journal of Medicine and conducted by researchers in the Netherlands, is being met with an outpouring of excitement. One reason the treatment worked, researchers suspect, is that doctors used a new type of snare to grab the clots. It is a stent, basically a small wire cage, on the end of a catheter that is inserted in the groin and threaded through an artery to the brain. When the tip of the catheter reaches the clot, the stent is opened and pushed into the clot. It snags the clot, allowing the doctor to withdraw the catheter and pull out the stent with the clot attached.

“This is a game changer,” said Dr. Ralph L. Sacco, chairman of neurology at the University of Miami’s Miller School of Medicine.

A stent, basically a small wire cage, on the end of a catheter is inserted in the groin and threaded through an artery to the brain. Credit Covidien

A stent, basically a small wire cage, on the end of a catheter is inserted in the groin and threaded through an artery to the brain. Credit Covidien

“A sea change,” said Dr. Joseph Broderick, director of the neuroscience institute at the University of Cincinnati.

About 630,000 Americans each year have strokes caused by clots blocking blood vessels in the brain. In about a third to half, the clot is in a large vessel, which has potentially devastating consequences. People with smaller clots are helped by the lifesaving drug tPA, which dissolves them. But for those with big clots, tPA often does not help. Until now, no other treatments had been shown to work.

The new study involved 500 stroke patients. Ninety percent got tPA. Half were randomly assigned to get a second treatment as well. A doctor would try to directly remove the clot from the patient’s brain. The study did not specify how the removal would happen. There are several methods, but the vast majority were treated with the new stent.

One in five patients who had tPA alone recovered enough to return to living independently. But one in three who also had their clot removed directly were able to take care of themselves after their stroke. And that, said Dr. Larry B. Goldstein, director of the Duke Stroke Center, is “a significant and meaningful improvement in what people are able to do.”

It has been a long road to this success, explained Dr. Walter J. Koroshetz, acting director of the National Institute of Neurological Disorders and Stroke. It began in the 1980s when researchers began testing intravenous tPA. In 1995, when the first large study was published demonstrating tPA’s effectiveness, stroke experts were jubilant. They were left, though, with the problem of helping people with large clots.

Companies began marketing various clot-snaring devices, but there were no studies showing they helped. Using them could be risky — some involved pushing wires through twisting blood vessels that often were damaged already from atherosclerosis, Dr. Koroshetz explained. “You could puncture an artery and if you do and get bleeding in the brain, you have a problem,” he said. Another problem was that sometimes fragments of a clot could break off and be swept deeper into the brain, causing new strokes.

The systems were also expensive. Giving a patient tPA cost about $11,100. Using one of the new devices could cost $23,000, Dr. Koroshetz said.

But some neurologists were enthusiastic. The Food and Drug Administration cleared the first device for clot removal in 2004, allowing it to be marketed. The clearance was granted because the agency considered the device to be equivalent to something already in use — devices used to snare pieces of wires or catheters that might break off in a blood vessel during a medical procedure.

That, other neurologists said, was not at all the same as going into the brain to grab a clot. “There was a lot of controversy,” Dr. Koroshetz said. But the devices quickly came into widespread use. It took time and experience for doctors to learn to use the devices, and not everyone had the necessary expertise.

Even so, said Dr. Diederik Dippel, professor of neurology at Erasmus University Medical Center and principal investigator for the new study, when his study was about to begin, people questioned why it was even needed. “People said why bother with a clinical trial. Just do it,” Dr. Dippel said.

The Dutch study began in 2010. In the meantime, several other large clinical trials testing clot removal were well underway, including one sponsored by the National Institute of Neurological Disorders and Stroke and headed by Dr. Broderick. By 2012, with 650 out of the planned 1,000 patients enrolled, the American study was ended. “Because of futility,” Dr. Koroshetz said. It had become clear that, if anything, those randomized to have their clots directly removed were doing no better.

Two other clinical trials also ended without showing benefit. All too often, attempts to remove clots resulted in uncontrolled bleeding in the brain.

Gloom settled over the field. In the Netherlands, Dr. Dippel said, attitudes about the trial reversed. “Everyone said, ‘Why should we go on?’” Dr. Dippel said.

But the Dutch study happened to start at a time when there were a few key developments that made it possible to hope for success. There was new technology that allowed doctors to quickly assess whether a stroke patient had a large clot and, if so, where it was. In previous studies they tried to guess from a patient’s symptoms. And the stent system for snagging a clot seemed safer and easier to use than previous devices.

The stent system, said Dr. Dippel, “was clearly a better device than we were used to.”

Of course, said Dr. Goldstein, he would like to see the results confirmed with other studies. But, he and others say, that may already have happened. Two other studies like the Dutch one were just ended early because the results were so positive. The data will be presented in February at the International Stroke Conference in Nashville.

Now neurologists are increasingly confident that, at last, they have something in addition to tPA to offer patients.

“I think this is the real thing,” Dr. Koroshetz said.

[Addendum: les morts-vivants sur France-Culture]

There is a Jewish joke about someone prostrating himself on the floor during the holiday of Yom Kippur and being ridiculed by two observers muttering to themselves “Look who thinks he’s nobody!”

After “being nobody” by not being able to move, speak and communicate, there is no going back to the innocence – and the naivety – of a simple existence; the point of no return can turn most activity into just that, just an activity.

Most people imagine themselves in charge of their own lives and relegate questions about free-will to philosophers.

Rarely do we question what we take for granted, but here is
a brilliant article that does just that – in the New York Times.

It is by Ferris Jabr, a freelance writer and an associate editor at Scientific American.

Why Nothing Is Truly Alive

By FERRIS JABR
MARCH 12, 2014

On a windy day in Ypenburg, the Netherlands, you can sometimes see sculptures the size of buses scuttling across a sandy hill. Made mostly from intricately conjoined plastic tubes, wood and sails, the many-legged skeletons move so fluidly and autonomously that it’s tempting to think of them as alive. Their maker, the Dutch artist Theo Jansen, certainly does. “Since 1990, I have been occupied creating new forms of life,” he says on his website. He calls them Strandbeest. “Eventually I want to put these animals out in herds on the beaches, so they will live their own lives.”

Poetic, most would say, but Strandbeest are not alive. They are just machines — elaborate, beautiful ones, but inanimate contraptions nonetheless. A few months ago I would have agreed with this reasoning. But that was before I had a remarkable insight about the nature of life. Now, I would argue that Strandbeest are no more or less alive than animals, fungi and plants. In fact, nothing is truly alive.

What is life? Science cannot tell us. Since the time of Aristotle, philosophers and scientists have struggled and failed to produce a precise, universally accepted definition of life. To compensate, modern textbooks point to characteristics that supposedly distinguish the living from the inanimate, the most important of which are organization, growth, reproduction and evolution. But there are numerous exceptions: both living things that lack some of the ostensibly distinctive features of life and inanimate things that have properties of the living.

Crystals, for example, are highly organized; they grow; and they faithfully replicate their structures, but we do not think of them as alive. Similarly, certain computer programs known as “digital organisms” can reproduce, mate and evolve, but ushering such software through the gates to the kingdom of life makes many people uncomfortable. Conversely, some organisms — such as gummy bear-shaped microanimals called tardigrades and brine shrimp (whose eggs are sealed up in little packets like baker’s yeast under the brand name Sea Monkeys) — can enter a period of extreme dormancy during which they stop eating, growing and changing in any way for years at a time, yet are still regarded as living organisms.

In the 1990s, a group of scientists tasked with helping NASA find life on other planets devised a working definition of life: a self-sustaining system capable of Darwinian evolution. Even this phrase does not satisfactorily identify the fundamental difference between living things and nonliving things.

Consider a virus: a bit of DNA or RNA encased in protein that hijacks a cell to make copies of itself. Viruses are incredibly efficient reproducers and they certainly evolve — much faster than most creatures. Yet biologists have disagreed for centuries about whether viruses belong among the ranks of the living, the inanimate or in some kind of purgatory. Gerald Joyce, one of the scientists who helped devise NASA’s working definition of life, says that viruses do not satisfy the definition because they are not “self-sustaining” — that is, they can only evolve in the context of the cells they infect.

The same is true, though, of many larger parasites that everyone agrees are alive. Bloodthirsty intestinal worms, vines that suck the sap from other plants, fungi that extrude filamentous antlers of flame orange through the shells of spiders they have killed — all are just as dependent on their hosts to reproduce and evolve as is a virus.

About 10 years after serving on the NASA panel, Mr. Joyce embarked on experiments that further deflated the agency’s working definition of life. In the lab, he and his colleagues coaxed into existence two rather unique molecules of RNA that can indefinitely make copies of one another by stitching together sequences of nucleotides, their building blocks. Four billion years ago, in Earth’s primordial soup, similar self-replicating RNAs may have spontaneously formed from linkages of free-floating nucleotides. As naked pieces of RNA, they are even simpler than viruses and, because they can reproduce and evolve, Mr. Joyce admits that they, too, meet the working definition of life. Yet he hesitates to say they are alive.

Why so much ambivalence? Why is it so difficult for scientists to cleanly separate the living and nonliving and make a final decision about ambiguously animate viruses? Because they have been trying to define something that never existed in the first place. Here is my conclusion: Life is a concept, not a reality.

To better understand this argument, it’s helpful to distinguish between mental models and pure concepts. Sometimes the brain creates a representation of a thing: light bounces off a pine tree and into our eyes; molecules waft from its needles and ping neurons in our nose; the brain instantly weaves together these sensations with our memories to create a mental model of that tree. Other times the brain develops a pure concept based on observations — a useful way of thinking about the world. Our idealized notion of “a tree” is a pure concept. There is no such thing as “a tree” in the world outside the mind. Rather, there are billions of individual plants we have collectively named trees. You might think botanists have a precise unfailing definition of a tree — they don’t. Sometimes it’s really difficult to say whether a plant is a tree or shrub because “tree” and “shrub” are not properties intrinsic to plants — they are ideas we impinged on them.

Likewise, “life” is an idea. We find it useful to think of some things as alive and others as inanimate, but this division exists only in our heads.

Not only is defining life futile, but it is also unnecessary to understanding how living things work. All observable matter is, at its most fundamental level, an arrangement of atoms and their constituent particles. These associations range in complexity from something as simple as, say, a single molecule of water to something as astonishingly intricate as an ant colony. All the proposed features of life — metabolism, reproduction, evolution — are in fact processes that appear at many different regions of this great spectrum of matter. There is no precise threshold.

Some things we regard as inanimate are capable of some of the processes we want to make exclusive to life. And some things we say are alive get along just fine without some of those processes. Yet we have insisted that all matter naturally segregates into two categories — life and nonlife — and have searched in vain for the dividing line.

It’s not there. We must accept that the concept of life sometimes has its pragmatic value for our particular human purposes, but it does not reflect the reality of the universe outside the mind.

Theo Jansen and his Strandbeests/BeachBeasts
(Music by Khachaturian’s Spartacus)


Video by Theo Jansen

Recognizing life as a concept is, in many ways, liberating. We no longer need to recoil from our impulse to endow Mr. Jansen’s sculptures with “life” because they move on their own. The real reason Strandbeest enchant us is the same reason that any so-called “living thing” fascinates us: not because it is “alive,” but because it is so complex and, in its complexity, beautiful.

Watch a Strandbeest’s sail undulate in the wind, its gears begin to turn, its legs bend and extend in sync over and over — so dauntless, so determined. It does not matter whether this magnificent entity is alive or not. Just look at it go.
====
Strong parallels with Cymatics:

HospitCurt01When the “engine” was just starting to rev up again, when I could still feel the difference between the “nothing” of being a vegetable and what I was starting to experience, i.e., looking outside, at a tree, at the grass, feeling the breeze around me, hearing music… it was clear that all of that was amazingly addictive.
I wanted more of it, even if it was in small doses.
There was a pleasure principle (endorphins?) that was activated, and I was hooked.

What a relief from the hospital where. starving for stimulation, my eyes and brain would relentlessly work off the curtains’ patterns and imagine various creatures and scenes.HospitCurt

Nothing is more real than nothing. Beckett Malone Meurt/Malone Dies – 1951

We Are Nobody by Pier Marton

Yes, there were times when I forgot not only who I was, but that I was, forgot to be. – Samuel Beckett, Molloy, 1951

The clamor is everywhere: BE SOMEBODY!… but those efforts are illusory. Beyond our names and our affiliations lies the same eternal nobody that we were when we were born – and that we will be when we die. What surrounds us – all the stuff, the concepts… – blinds us and entraps us into a fortress, a coffin. These facts, though, do not constitute any reason to become pessimistic, merely realistic. And freer.

A false sense of self, or is it that any sense of self is false?
Not unlike the Buddhist warning about everything being “maya“- a form of illusion, it is clear that much of what surrounds us (the concepts, the busyness… ) stands on wobbly foundations.
The silence – not the physical type [machines were beeping, announcements and similar activities abounded around me] – a form of beyond-activity spelled out clearly, within a form of silence – that everything was nil.

O vanity of vanities, behind all the “stuff” that surrounds us lies…

… nothing.
And no need to expand much on this.

Either you understand this or you don’t.
More words will not help.

It seems most people have no interest in this type of “information” – it just does not seem to fit anywhere.


About “being nobody” per se, paralleling Kafka’s “I have hardly anything in common with myself ” & “My People! My People! If only I had one,” I would refer you to many others who have expanded on that topic: Guy Debord, Alejandro Jodorowski, U.G. Krishnamurti. Or you can view the recent brilliant film “The Other Son.
Without saying, saving lives is not part of this concern.

My response to someone asking me whether I was healed.
Ma réponse à quelqu’un qui me demandait si j’étais guéri.

(use Google Translate for a quick translation)

On n’oublie rien de rien
On n’oublie rien du tout
On n’oublie rien de rien
On s’habitue, c’est tout

Ni ces départs, ni ces navires
Ni ces voyages qui nous chavirent
De paysages en paysages
Et de visages en visages
Ni tous ces ports, ni tous ces bars
Ni tous ces attrape-cafards
Où l’on attend le matin gris
Au cinéma de son whisky
Ni tout cela, ni rien au monde
Ne sait pas nous faire oublier
Ne peut pas nous faire oublier
Qu’aussi vrai que la terre est ronde.

On n’oublie rien de rien
On n’oublie rien du tout
On n’oublie rien de rien
On s’habitue, c’est tout

Ni ces jamais ni ces toujours
Ni ces je t’aime ni ces amours
Que l’on poursuit à travers coeurs
De gris en gris de pleurs en pleurs
Ni ces bras blancs d’une seule nuit
Collier de femme pour notre ennui
Que l’on dénoue au petit jour
Par des promesses de retour
Ni tout cela ni rien au monde
Ne sait pas nous faire oublier
Ne peut pas nous faire oublier
Qu’aussi vrai que la terre est ronde

On n’oublie rien de rien
On n’oublie rien du tout
On n’oublie rien de rien
On s’habitue, c’est tout

Ni même ce temps où j’aurais fait
Mille chansons de mes regrets
Ni même ce temps où mes souvenirs
Prendront mes rides pour un sourire
Ni ce grand lit où mes remords
Ont rendez-vous avec la mort
Ni ce grand lit que je souhaite
A certains jours comme une fête
Ni tout cela ni rien au monde
Ne sait pas nous faire oublier
Ne peut pas nous faire oublier
Qu’aussi vrai que la terre est ronde

On n’oublie rien de rien
On n’oublie rien du tout
On n’oublie rien de rien
On s’habitue, c’est tout

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.

What U.G. Krishnamurti (not the famous one) said over and over in his books already made a lot of sense before my surgery.

Now, would anyone be able to hear what he said, it would save a lot of my efforts in explaining the particular distance I started describing in my earlier posts (Brecht, Herzog…).

If you are willing to enter his realm – not a matter of arguing with him – there are many texts/sites that could challenge your self.
U.G.
The two main sites:

U.G.Krishnamurti.org
&
U.G.Krishnamurti.Net

And books (composed primarily of interviews):

My teaching, if that is the word you want to use, has no copyright. You are free to reproduce, distribute, interpret, misinterpret, distort, garble, do what you like, even claim authorship, without my consent or the permission of anybody.
–U.G.


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.