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    Tuesday, July 12, 2005

    A Locked-In Life: The story of Nick Chisholm, whose life changed irrevocably due to a rugby ball:

    "It felt like I was in a really bad nightmare constantly for about the first three months. I could only just hear (I couldn't even open my eyes or breathe by myself); without them even knowing that I still could hear, the doctors and specialists in front of me said to my mum that I would die. They even asked my mum if she wanted them to turn the life support machine off after a few days.

    ....Even my case manager at the Accident Compensation Commission at the time said in the same room that I was in (my eyes were still closed), that "even if I did live, I wouldn't want to anyway." One specialist told me to get used to the wheelchair, because I'll be in one for the rest of my life. What do they really know? They only know what they read in textbooks .

    ...Some time in 2001 I had to meet with my neurologist again. He wasn't at all positive (telling me bluntly), "Whatever gains you have made to date, they're all the gains you'll ever make." After being home about four months, I had to see one specialist who, ages ago, said I wouldn't get any better (he basically said I'd never move or talk), he asked me to show him what I could do and say now, so I did. He apologised and took back everything he had said. I gave him the finger, and the carer and I left.

    I've always thought, fuck what they think and say—or I would have been dead at the start. Most specialists and doctors with whom I've dealt since my accident have been so extremely negative."

    Sadly, that's a universal attitude toward the brain injured.

    The medical co-author inserts an also-worth-reading philosophical dialogue on the difference between locked-in-syndrome and the persistent vegetative state:

    Locked-in syndrome (also known as coma vigilante) poses problems for clinicians, who just do not understand that their patient is a silent and unresponsive witness to everything that is happening. It is more often relatives than medical staff who realise the patient's predicament (usually by noticing intuitively that the patient is awake and registering what is going on). Nick's mother and his girlfriend pleaded with the medical staff to realise that he was aware of what was happening, and when the clinicians appreciated that the diagnosis was locked-in syndrome, the climate of care changed. A patient in locked-in syndrome cannot interact with us because he or she has lost the ability to control his or her body (except, in most cases, the ability to move the eyes up and down) but, importantly, the subliminal cues that intuitively alert us to the presence of another person are all that is needed for the suspicion to form and then the diagnosis to be confirmed by imaging and bedside interaction. Locked-in syndrome is caused either by a lesion in the brainstem (usually vascular) or by extensive demyelination, denying the brain its peripheral connections.

    Nick, aged 23 at the time, was plunged into locked-in syndrome by a dissection of the vertebral arteries during a rugby game. The syndrome is quite different from other forms of coma or the persistent vegetative state, although they may be confused at the bedside.

    He goes on to argue that the locked-in-syndrome and the persistent vegetative state are diametrically opposed ethical problems. In the former, it's unethical to deny the right to live to a conscious person; in the latter it's unethical to grant the right to live to an unconscious person. But, since even specialists are so bad at distinguishing the two syndromes - shouldn't we - at least (or especially) initially, and until all doubt is removed - err on the side of caution? Especially given how little we understand of the brain's workings.

    posted by Sydney on 7/12/2005 01:09:00 PM 0 comments


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