Post-Rehab

No Man’s Land (Beyond Regular Communication)
[Could be “no woman’s land” and “no child’s land” – and all of the other animals, plants (I was just told of  Stefano Mancuso’s work), and what we, in an easy way, call “nature.”
A lot of people do try their best to do their very best. This is not what this is about.]



We speak, like on a freeway, we honk, wave, flash our lights and move forward, until… we don’t.
It is NOT “the road less traveled” – it is just “something” less talked about. Something we cannot “just discuss” – even friends listen without necessarily getting it, so yes doctors and nurses, surprisingly even less.


Beyond the words, beyond the diagnostics, the visual evidence, the charts and the scales, there is something else.


That is where I am, and what I want to address as pointedly/directly as possible.
I have heard a great many stories of patients going from doctor to doctor, from specialist to specialist, and the great many tests performed.
In my eyes, there is a very clear place that has to do with the fact that
whatever one describes is not properly heard.
Is it a lack of communication skills, the amount of time allocated for the exchanges, the poverty of the means to assess “what is wrong” and the fact that the symptoms may be too complex to fit a regular exchange in a doctor’s office?

To be continued – there is much more to this.


For those who many be interested in this: the Glasgow Coma Scale rates me a 15 (Mild) but because of a so-called   “Complicated Head Injury,” I end up in the Moderate category.
What’s good about this? It allows me to acknowledge as per French rabbi Delphine Horvilleur’s recent book title, “comment ça va pas?” – how is it not going?.
Maybe all we need is some kind recognition, the details to be elaborated somehow, IF the right context exists somewhere, for that kind of  exchange/communication.

LET IT BE ALWAYS BEYOND THE REACH
like an asymptote, but with fellow passengers onboard
ACKNOWLEDGING “THAT”

What do we do after a major crisis? We are here but we are also somewhere else.
What remains is a state where simple answers do not exist anymore.
Someone asks “how are you,” and it is absolutely impossible to answer – cf. below Robert Frost on voting.

Language as a whole seems to belong to a “universe of scoundrels.” Not that anyone has any bad intentions, but non-conscious exchanges – when normalcy is assumed (which is most of the time) – turns the limping into some kind of consolation dance.

Insouciance” or “what-me-worry” was left behind.

One writes to make a difference, or simply to try to distinguish, not extinguish…
As each moment passes, one attempts to leave one trace, so each moment, in its particular uniqueness, is noticed — “I bore witness to myself.”

As much as the miracle of healing can take place – and we cannot take credit for that – there are points of no return.
What happened is what happened.
Overall though, I am where I am and you are where you are.
In that sense, we do not really communicate. As Artaud said: “we are (only) making signals through the flames.”
That difference is paramount. And unbridgeable: tears are not enough.
In this culture of denial, the dictatorship of positivity reigns; nobody has actually any room for what is conveniently summarized as “negativity” & real difference.

APPEARANCES
Because I can speak and interact normally*, most people assume that I have made a complete recovery… but the exhaustion endures (hands or knees shake at times) and very often there is a fog to be pierced through to interact with others.
The best way to express this is to say that my eyeballs don’t feel completely aligned with my eye sockets. I can look but am I looking, am I seeing?
Taking a warm shower or sitting in a hot-tub seem to help this discomfort – this simple trick provided my first sense of relief from feeling utterly “out of it.”
Similarly, if I move my head upward/downward or sideways too fast, everything spins around me. Doctors and rehab personnel have called this symptom a vestibular issue and tried in vain to manipulate my inner ear crystals.

DISTANCE
Earlier I have brought up my sense that much of life seem to be populated by “stuff” (as if I were floating in the intergalatic space described in the classic film “The Powers of Ten” [a link]).
There is also my persistent way of being disconnected from the (mundane) busyness of regular life.
As a doctor remarked astutely:

just to be there, present interacting with eyes, ears and one’s body and mind, IS a lot of work.

Normal sound and visual stimulation, even in their more quiet forms, are plenty to process. Handling the intensity of  a sunny day with the wind bristling through the leaves, or an excited crowd, is too much.

I used to value the distanciation/alienation (“Verfremdung” in German) that Brecht had advised for his epic theater. I had looked for it in theater, film and art.
Now I live with this distance on a daily basis. Even if I decried fluff in past writing, now fluff surrounds me everywhere (cf. Resnais’s film mentioned earlier).

And so, the small, the quiet, are much more appealing… I am reminded of this “Auto-Interview” by Primo Levi which I had always appreciated:

… we must be cautious about delegating to others our judgment and our will. Since it is difficult to distinguish true prophets from false, it is as well to regard all prophets with suspicion. It is better to renounce revealed truths, even if they exalt us by their simplicity and their splendor, or if we find them convenient because we can acquire them gratis.

It is better to content oneself with other more modest and less exciting truths, those one acquires painfully, little by little and without shortcuts, with study, discussion and reasoning, those that can be verified and demonstrated.

*more about that later

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.

To regain my footing – I still have major fatigue/balance issues – (following my mother who lived till 93 thanks to the good care of my brother), AFTER I have listened and followed most official medical advice… I now

TRUST IN VEGETABLE JUICES!
If I can gather them: ginger, garlic, parsley, cucumber, beets, spinach, tomatoes, carrots, celery, cabbage, asparagus.
(a few samples from an on-going series)


The Healing Arts Series © Pier Marton 2011

The Healing Arts Series © Pier Marton 2011

The Healing Arts Series © Pier Marton 2011

The Healing Arts Series © Pier Marton 2011The Healing Arts Series © Pier Marton 2011

REENTRY
I am finally at home. Never thought it would happen… Time had been so stretched out that I could not afford to hope for that anymore.

The drive home is “out of this world.” Trees, light, people, space… an amazing sight. And that huge gap between what I am, the most finite form of a self observing all of that, and the rest, what is generally called “life.”

OMG?
The weeks pass one by one.
Yes I am home…
BUT I am so sick that, in my naivete, I think that people in my state would NOT be allowed to live… by God.
So much for God!
Being asleep is the only solace along my (horizontal) day.

THOSE FRIENDS
So much for friends too, it has become clear that many friends will not be there, cannot be there. A no-man’s land has appeared, as sad as it may be, the borders are clear. I am losing “friend” after “friend.”
Days, weeks pass and no improvements. People asking me how I am doing cannot handle my repeating day after day that I am not well. They want to feel better about me.

KNOWLEDGE CAN ONLY COME FROM INSIDE
Hoping to finally read some of the classics on my shelves, it is clear that will have to be for another time: I cannot hold a book in my hands, nor concentrate on a page.
A great physical therapist who visits me at home and to whom I complain that I am doing absolutely nothing, responds that I am doing plenty: I am healing.
To take off from John Cage, I am doing nothing, but I am doing it!
Silent lesson in humility.

BARELY THERE
Later, when I can sit for a dinner, I cannot really sit up: my head has to be resting in my hands or worse, on the table on my arms.

STUFF
My first look at my desk with all of its tchotchkes, it was clear that had I not come back, most everything would have been stuff to those that survived me. I am the only one who knows what is what and provides meaning to “stuff”… most everything is stuff!

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.