A point of no return?
Alain Resnais, the master of time in cinema, wove some formidable strands with Jean Gruault’s screenplay and Hans Werner Henze’s music.
On my 10 Best Films list “before,” and now even more so.
and its music by Hans Werner Henze:
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:
Visitors, well-wishers, friends (so many disappear… ) overall do not know how to be with a sick person. It seems as if THEY would like to be taken care of because THEY cannot handle the stress of being with you…
I remember a friend from those days having a hard time accepting that “No, things were not better” and this was not changing fast enough… but a sick person cannot be teaching a healthy person how to be (with a sick person).
From my point of view, besides the good tips below,
just BE with the other person, NO need to fill in the gaps.
Presence is 100 percent of life.
=================================================================
An excerpt from the NYTimes article by Bruce Feiler:
The NEVERs:
1. WHAT CAN I DO TO HELP? Most patients I know grow to hate this ubiquitous, if heartfelt question because it puts the burden back on them.
2. MY THOUGHTS AND PRAYERS ARE WITH YOU. In my experience, some people think about you, which is nice.
3. DID YOU TRY THAT MANGO COLONIC I RECOMMENDED? I was stunned by the number of friends and strangers alike who inundated me with tips for miracle tonics.
4. EVERYTHING WILL BE O.K. Unsure what to say, many well-wishers fall back on chirpy feel-goodisms.
5. HOW ARE WE TODAY? Every adult patient I know complains about being infantilized.
6. YOU LOOK GREAT. Nice try, but patients can see right through this chestnut.
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:
People Simplified ©Marton 2012
d
… the good and the bad.
You are in charge, even if you are dying.
(to be remembered, if possible, till the end)
–
Samuel Beckett
” Ever tried. Ever failed. No matter. Try again. Fail again. Fail better.”
“I can’t go on, I will go on.”
–
Don Miguel
“Don’t Take Anything Personally. Nothing others do is because of you. What others say and do is a projection of their own reality, their own dream.
When you are immune to the opinions and actions of others, you won’t be the victim of needless suffering.”
–
As Ajahn Sumedho calls one of his books:
Don’t Take Your Life Personally
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 2011REENTRY
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!
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….
I lead a so-called “normal life” except that my father, one day around 6 or 7 in the morning, had died of a brain hemorrhage at the age of 55.
I had wondered whether it had been an earlier trip to the mountains that had precipitated it (or some imagined sexual activity); we did not know nor did any doctor we had spoken to. His blood pressure had not seemed an issue.
With that kind of history a radiologist friend had recommended that I get an MRI of my brain, and I did: an AVM was present, like a knot of small vessels.
The neurosurgeon wanted to operate – either the regular way or with gamma knife. All of it sounded scary – I wanted to leave my brain alone. A neurologist friend had told me that if it were asymptomatic, not to touch it. The AVM could have been present all of my life and may have remained stable until old age.
And I kept thinking of how surgeons may think of surgery the way butchers think of cuts…
Later, I found out that one of my paternal grandfather or great-grandfather had died of a brain hemorrhage and so had one of my father’s sisters.