… 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
Insights
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 2011
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….
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.