26 November 2009: my father, the Global Brain and Thanksgiving
Thursday, November 26th, 2009Today would have been my father’s 66th birthday if he hadn’t passed away following a coma, induced by a fall and the resultant head injury. It’s also a year today that I posted the ‘Global Brain’ onto Google Knol, which has won every Knol community award possible. On top of that, Thanksgiving falls on this Thursday so it’s quite a day of triangulated serendipity and personal peace.
I was thinking about my father earlier this week because a story surfaced about Rom Houben, a Belgian engineering student, who was diagnosed to have been in a coma for 23 years and now seems to be communicating that he was conscious and could hear the entire time:
· http://www.spiegel.de/international/spiegel/0,1518,663022,00.html
· http://news.bbc.co.uk/1/hi/magazine/8378262.stm
· http://www.cnn.com/2009/HEALTH/11/24/coma.man.belgium/index.html
· http://www.timesonline.co.uk/tol/life_and_style/health/article6930608.ece
· http://www.guardian.co.uk/world/2009/nov/23/man-trapped-coma-23-years
· http://www.huffingtonpost.com/michael-shermer/the-coma-man-hoax_b_371269.html
· http://www.wired.com/wiredscience/2009/11/houben-communication/
As is clear in the Wired and Huffington Post articles, Houben’s story is not without its skeptics and detractors — particularly those who question the use of “facilitated communication” techniques and technologies and who liken his carer’s interpretations of Houben’s communiqués to be another form of Ouji board psychology.
However, personally, I’m a lot more interested in finding out about his neuroscientist, Dr. Steven Laureys’s, research and analysis at the Coma Science Group, Sart Tilman Liège University Hospital :
· http://www.coma.ulg.ac.be/home/steven.html
· http://fivanblog.blogspot.com/2009/07/conversation-with-dr-steven-laureys.html
· http://www.neurology.org/cgi/content/abstract/63/5/916
Several of the news articles mention that the Glasgow Coma Scale is the current established methodology for establishing consciousness via checking physiological responses (eye opening, motor response to pain stimulus, verbal response), and it is this test that I openly challenge is INSUFFICIENT for establishing whether a person is conscious or not.
MY FATHER’S STORY: HOW I KNOW MORE NEEDS TO BE RESEARCHED
Let me share again my father’s story. My family entrusted me with the responsibility of visiting my father and dealing with the doctors AND THANK GOODNESS IT WAS ME because if it was a person less aware, intelligent and thorough than me, then the doctors would have gotten away with a pitiful letter in which they stated that my father was “completely unresponsive” during his coma state.
As a matter of legal record, they later had to apologize for this statement and also for the trauma caused to my family throughout my father’s situation in coroner’s court.
When the coroner notified us that this was the hospital and the neurosurgery team’s account of events (my father was unconscious the whole time, they claimed) and the basis of why they thought there was no need to appear in the coroner’s court to explain any further the medical situation that befell my father, I immediately sent the coroner mobile phone videos I’d made which clearly showed that my father WAS RESPONSIVE, was aware of our presence and could hear us. I also sent the coroner transcripts of the conversations we’d tried to conduct with him and the expression changes in his face.
Initially, there was to be no appearances in the coroner’s court by any professional parties involved. My father’s case was supposed to be a simple letter to the family and case closed.
Needless to say, after I provided the evidence and my account, the neurosurgeon, the hospital trust representative (they were concerned about us taking legal action against them), the ambulance staff and the policeman who found my father collapsed on the streets ALL had to appear in the coroner’s court and account for themselves, under oath.
It’s from personal experience that I know the Glasgow coma scale, the ECGs and the MRI scans are insufficient and that the medical profession needs to explore additional tools and tests to establish human consciousness (physiological as it manifests in the limbs as well as a neural phenomenon).
This is why in the ‘Global Brain’ knol I make a reference to a model of consciousness that challenges the orthodoxy of what neuroscientists think we know about the brain and consciousness. Just because my father had lost his command of communication and physiological control of his limbs, did NOT mean he was unconscious. In my model of consciousness, I list these characteristics to define consciousness:
To this day, I remain convinced that my father could sense our presence — whether that was via hearing our voices or sensing our touch. I believe this because no doctor or nurse in the world (who regards the patient as a number on a ward, only drops by a patient’s bedside to conduct some insufficiently informative tests for 5 minutes and have no emotional history with that patient) are going to spot changes in the coma patient’s face when he recognizes and is cognizant of either the face, voice or touch of cultural inputs he’s familiar with.
The doctors and nurses are ignorant and not there when that happens.
However, family members who sit with their loved one all the hours permitted DO KNOW even the subtlest changes in the person’s face. Then when the mobile video evidence is provided that’s when the doctors and nurses apologize for writing ridiculous statements like the patient was “completely unresponsive” and a level of care which was not what it should have been.
In all probability I’ll contact Dr. Laureys and share my father’s story because becoming more informed about states of consciousness is important and will affect how the medical profession takes care of coma patients and communicate with their families. For example, the neurosurgeons told my mother and I that they had little hope of my father’s chances of survival right next to his hospital bed. That’s one of many procedures I’d change. Personally, I always worked on the belief and principle that my father could hear and sense us. Therefore, in my view, that comment by the doctors should NOT have been said in the same room as him, much less right next to his bed. I included that in my statement to the coroner too, which got another apology from the lead neurosurgeon.
My family was slightly apprehensive when I said I was not going to accept the hospital’s original letter and that it was not only an inaccurate account of my father’s final days, it was also disrespectful to my mother because the information they provided could not help her towards closure or proper grieving. In the end, everyone was glad I did get the professionals to appear at the coroner’s court and the hospital apologized to my mother. That means a lot.
I hope that all readers, whoever and wherever they are, will cherish the time they share with people they love and who are important to them — particularly today at Thanksgiving.
As for my father, I know he’s happy and at peace. We were there beside him and did what we could during his final days and thereafter. We showed love, care, humor, honor and respect.




















