Public funding of health services as a tribute to Hawking’s life

On personal encounters with the scientist, his quirkiness and why efforts that went into ensuring that he could indulge his enthusiasms should be available to all with his kind of medical condition

The death of Stephen Hawking a few days ago, is not only the loss of a gifted scientist, but a courageous human being, who had a great zest for life, helped by a bit of essential quirkiness. His life, characterized by his brilliance at mathematics and physics; and also the motor-neuron disease that he lived with, serves as an example of what individuals, and societies, can aspire to.

But the quirkiness first. As a Commonwealth Fellow at the Gonville and Caius College at Cambridge, in 1994, one often found Stephen Hawking at the dinner table. A charming raconteur himself, he followed the chatter around the table, and often made comments that left everyone bemused. On one such occasion, the clocks chimed outside, and some of us looked at our watches, and observed they were ‘off’ by a minute or so. Someone commented on the incongruity of being at Cambridge, with someone who had just written the book on Time, and the un-synchronized clocks! To which Stephen Hawking responded that this being Cambridge, they did not necessarily follow the Greenwich time, but set the clock to the ‘actual’ sidereal time. Greenwich was a fraction of a degree to the west of Cambridge, and the clock was thus set to about a minute off! Whether this asynchrony was an actual example of the academic and intellectual freedom of the University, or Hawking pulling our leg, one could never know. But most people around the table seemed to agree that eccentric Cambridge habits seemed a likely explanation.

In the case of Stephen Hawking, was the propensity to develop the motor neuron disease somehow also linked to his brilliance, and the capacity for flights of logic and insight, that helped all our imaginations soar to the ends of the universe? As some cells were dying, were the others trying to overcome the problem by reconnecting, and in a way that made these insights possible?

One often saw Stephen Hawking moving around the streets on his support vehicle, and shopping; and participating in the life of the University. Colleagues at the Addenbrookes hospital, where I was working, would talk about the various prostheses, the activated sensors, the voice synthesizers and the technological skills that were being deployed to help Hawking move and communicate. And of course the nursing and medical help that was necessary all the time. And the fact that it was all co-ordinated through the National Health Service (NHS), and an array of services.

This, for medicine, and health care, was obviously a triumph; and equally importantly, raised compelling questions about the relationship between the brain and the mind. As his movements got more and more restricted, his mental capacities did not show a proportional decline at all. How much of the brain, and which parts of it are necessary to create the mind (are the two linked at all?) is a question that has baffled clinicians for centuries. Motor Neuron Disease/Amyotrophic Lateral Sclerosis are a syndrome wherein critical nerve cells in the spinal cord and brain die, though slowly but inexorably. Since these cells are otherwise programmed to live very long, in some cases the entire life span of the person, the symptoms too begin much later in life. Nerve cells cannot be replaced or regenerated, thus there are no treatments available as yet. Research in genetics has identified many ‘at risk’ genes, but the mechanisms remain obscure. In general, these kinds of diseases that affect the mind and brain, from the common ones such as schizophrenia and autism and Parkinsonism, to the relatively rare syndromes of MND pose particular scientific and ethical challenges.

Colleagues at the Addenbrookes hospital, where I was working, would talk about the various prostheses, the activated sensors, the voice synthesizers and the technological skills that were being deployed to help Hawking move and communicate. And of course the nursing and medical help that was necessary all the time. And the fact that it was all co-ordinated through the NHS, and an array of services

In the case of Stephen Hawking, was the propensity to develop the motor neuron disease somehow also linked to his brilliance, and the capacity for flights of logic and insight, that helped all our imaginations soar to the ends of the universe? As some cells were dying, were the others trying to overcome the problem by reconnecting, and in a way that made these insights possible? Many gifted scientists have struggled with psychiatric and neurological disease. Kurt Godel starved himself for death for fear of being poisoned; Paul Dirac manifested behavior that would be called autistic; and Albert Einstein’s son developed severe schizophrenia. The links between genius and madness are often debated, but since madness itself is perhaps a brain dysfunction, perhaps it’s time to address this question in a different way.

As research continues into the biological and genetic correlates of these diseases, one if often asked about the ‘public health’ utility of this information; of preventing their occurrence by offering the choice to those who have the condition to ‘not conceive’; or abort fetuses who may carry the risk genes for these disorders. Since these diseases typically start much later in life, it raises an ethical quandary. If this genetic and medical knowledge were to be put into practice, would we actually prevent another Stephen Hawking (or Paul Dirac and Kurt Godel) from being born? Would the world be a better place? The human body, and the mind, have evolved over millennia, and whether we accept all the diversity (and eccentricities) of the human condition, or try and iron out every wrinkle to make a flatland is a decision we must constantly debate.

At another level, Stephen Hawking was relentless campaigner for a national health service (the NHS in the UK). He was a strong advocate for the public funding of health services, and went out of his way to support it, and engage in active debate with the politicians, because, as he said, his life actually depended on it. In sharp contrast, the total lack of services, or even discussions about this, for those who develop these disorders, in India, is shocking, indeed tragic.

While our lives are enriched by this very peripheral contact with Professor Stephen Hawking and his ideas, we must try and ensure that his zest for life, and the efforts that went into ensuring that he could indulge his enthusiasms, for our benefit as much as his, are made available to everyone with these conditions. That would be fitting epitaph for a life such as his.

(Sanjeev Jain is a professor of psychiatry at the National Institute of Mental Health and Neurosciences (NIMHANS), Bengaluru)

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