@T: ALWAYS THE TWAIN

Today would have been my father’s 66^th 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://news.sky.com/skynews/Home/World-News/Rom-Houben-Man-Trapped-In-23-Year-Coma-In-Belgium-Was-Conscious-Whole-Time/Article/200911415463106

· http://www.timesonline.co.uk/tol/life_and_style/health/article6930608.ece

· http://www.telegraph.co.uk/comment/columnists/lizhunt/6649381/Rom-Houben-and-the-human-spirit-that-would-not-be-denied.html

· 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.

Yesterday in the Times there was an article entitled, ‘Babies’ brains are more sophisticated than we ever believed’:

* http://women.timesonline.co.uk/tol/life_and_style/women/families/article6793658.ece

Quite a few of the readers’ comments on the Times’s article are interesting, revealing and worth reading.

TWAIN’S VIEWS

Well, I’ve known how much brighter babies are than adults give them credit for ever since I was a baby myself, later when my younger brother was born and now when I see babies out and about. Yesterday, the whole of London seemed to bloom with babies since the sunshine brought out all their proud parents and their prams. Some were also in harnesses on their mothers’ backs or making their first attempts at walking. One little baby girl in a bright pink baby suit decided she couldn’t figure out which order her feet were supposed to go to make a step, so she plunged herself onto her derrière in protest — LOL. She’ll probably grow up to be a campaigner and do sit-ins. Another baby decided he wanted to show off his ability to put his big toes into his mouth. Cute.

Anyway, I didn’t need any Barbies / Sindys / teddy bears as a kid because I had a real live, kicking, screaming, gurgling, learning human (Twain) experiment, bundle of joy in our family in the shape of our youngest. There was enough of an age gap between us for me to actually treat him like a scientific study case rather than just go “Goo-goo-ga-ga, awwwwww,” over him!

I used to put him through his paces to test his mental, physical, audio-visual and emotional dexterity and consciousness. That started happening when he was 3 months old and my parents decided they could trust us to help him do his muscle strengthening exercises. This involved putting him on his back and gently stretching out his limbs, whilst counting to him in Mandarin with each movement and then holding up brightly colored objects to see whether he was:

(1.) able to follow the object around;

(2.) able to detect when an object had been swapped; and

(3.) able to anticipate whether we were going to put the object near his nose / his hands / us.

He was pretty good at all of these tests. His special talent was more audio than visual, though. Once he could walk the first thing he tried to do was switch the TV on for the sound. Maybe that explains his musical talents now.

Before he arrived though, I’d been experimental with kids younger than me when I was about 4. I babysat a neighbor’s little 2-year-old and earned HK$2 per day for my efforts. That baby, though, was definitely not as bright or inquisitive as my younger brother. She was quieter and more introspective.

With my own children — the ones that will make my mother a grandmother — I plan to record and document all my experiments with them. That’ll be fun!

T-MODEL OF CONSCIOUSNESS

So I was thinking about this whole issue of, “What’s consciousness and where is it,” my father’s coma situation and was also wondering whether the Internet’s version of the Global Brain might enable us to produce a proxy for our natural brain, the location of consciousness and this is what’s emerging as my model:

By medical definition, my father was considered to be “unconscious” which meant that the ECG (electrical conductivity graphs) couldn’t detect any discernible voltage that might indicate electrical activity in his brain. He also seemed to be unresponsive to instructions and actions from the nursing staff. Yet when I visited I got the distinctive impression that he was conscious so I set about doing my own experiments to test for his responsiveness — over and above whatever the ECGs and daily physical routines / procedures the hospital staff were doing.

I reasoned that, according to medical literature, we’ve identified certain areas in the brain which relate to cognisance (or recognition of faces / voices), communication and command/control over our physical limbs. Similarly, in the way in which the Net is forming we have ways of cognisance (via avatars and images), communication (text, images, IMs, emails etc) and a command/control function in the coding which paths all those IF mouse is clicked, XYZ happens or WHEN text is input, insert into database type commands which appear in Boolean, Javascript, AS3, Squeak and every other OOP (object-oriented program) which makes up what we call the World Wide Web or Net.

So I started to make the connections between all the literature (including business psychology models) I’d read since childhood, my own observations of how the brain works in situ (including young children and spending time with my grandparents as much as daily interactions with people @ work and @ play), my father’s situation and my work on the Net and this realization sparked:

* WE HAVEN’T DISCOVERED CONSCIOUSNESS YET BECAUSE WE’RE LOOKING IN THE WRONG PLACES AND WITH THE WRONG TOOLS! What if it’s not via ECGs and MRIs alone?

Then the challenge becomes, “Well what model or framework can we build to detect it and guide us to finding the right tools?”

Through the interactions with my father it became apparent that he had cognisance of who I was and also of Elvis and Pavarotti when I plugged in his music headset. His facial expressions would change subtly but perceptibly. There was also moistness which formed in his eyes and showed up on his lashes. He could sense and was moved by the music, that’s how I interpreted this moistness. I can imagine how frustrating it must have been for him: an intelligent and articulate person who was in a vegetative state.

To the hospital staff, he was a patient number. To us, he was ORGANIC: our fellow journeyer through Life’s ups and downs, evolving and mutating along the way. He was the one who — together with our mother — taught us how to walk, talk, read, write, laugh, cry, imagine, be and a billion other shared experiences (good and bad). Just as he had comforted us, washed our faces and held our hands when we were relatively young and dependent, so it was our turn to hold his hand, wash his face and do whatever we could to comfort him. The sensation of touch was another way for me to gauge his state of being.

Here too I got the sense that he was conscious and aware he wasn’t alone and that we were with him. He couldn’t grip my hand back but occasionally there was a pulsation on the tips and it would become warmer.

After a few days, it struck me that whilst he’d lost functional ability of his communication, command/control, collaboration and coherence faculties I didn’t (and still don’t) personally believe that he’d lost consciousness entirely — only the consciousness as currently defined by medical information and the tools available.

What’s irrefutable is that we haven’t definitively found consciousness or its location yet. If we had, I’d probably have read about it in The Lancet, New Scientist, Wired, Nature, Scientific American, British Medical Journal, Neurosurgery Quarterly etc. (i.e., any of the specialist medical publications listed here: http://www.medic8.com/Journals/All.htm).

So I started to think about, “What are the core elements of consciousness then — if the medical one is incomplete? Maybe once we find the core elements we might be able to narrow down the zones within the cortex where consciousness is triangulated.”

Culture, I thought, must be in there somewhere. Each of us is born into a particular culture and that DNA inherited from our parents must contribute to our consciousness, its course and its shaping in our histories, here and now and futures.

My father had a sense of his own culture because when I spoke with him in Chinese, again there were those subtle changes in his face. When the nurse(s) came to follow through with their procedures and addressed him in English I could see that his face was expressionless. If I read a passage to him from a book on plants, that expression was different from when I read a passage from a historical Chinese novel. When he was listening to Pavarotti there was a glow to his face which was different from if I played a Chinese female singer from the 1940s and 1950s.

Anyway, more recently whilst tracking developments on the Net and the building of “The Global Brain” I realized that culture is a core component here too. We talk about Semantics and yet the definition of semantics means different things to different people (around the world, across genders, traversing cultures and educational / professional reference points).

To Tim Berners-Lee and the W3C it means a set of ontologies to help us classify data objects. To me, it means those ontologies PLUS taking into account cultural and perceptual factors like subtle nuances, double entendres, potential lost in translations, the differences between male-female communication etc.

I think also of the coherence component. We can have ontologies which stand up in their own right and yet are not coherent in the whole. So, for example, the logic of their classification doesn’t synch with another’s. Paris in RDF form is a location, a proper noun and a fictional character from Homer’s Odysseus but, presently, if we went on the streets and asked people, “What does Paris mean to you?” the answer would not be “Capital city of France / Paris Hilton / Paris, Prince of Troy.” John / Jane Doe on the street is more likely to say:

* It means romance.

* It means the Eiffel Tower / Sacre Coeur / the Louvre / La Rive Gauche (the Left Bank) etc.

* It means Sartre / Voltaire / de Beauvoir etc.

* It means an eye line that’s different / compact / elegantly distinguishable from London, New York and Toyko: fewer skyscrapers, more central planning.

* It means expensive / chic / beautiful / etc.

So is this set of classifications coherent with the noun set? No, it’s not. That’s because the adjectives set hasn’t yet been accounted for in the W3C design (I’ve accounted for it, though, in my model and algorithms).

Within the coherence component we also have to think about the clustering approach and whether the Bayesian tree filter approach is the optimal model for clustering. I would argue not (but that’s another post and some more emails between me and the MIT Collaboratorium team).

Once we crack the coherence component, the next ones to focus on would be consideration and creativity. What tools can be developed to harness or enhance those?

Again, if we compare the Net’s potential Global Brain with the actual human brain we can see that according to my model, if we can establish the definitive components and where they reside (cognisance, communication, command / control, collaboration, coherence, creativity, consideration and culture) we may pinpoint the holistic manifestation of consciousness itself.

That’s something good and positive to work together towards…….