My son's gone: let no one else suffer like us

21st February 2011

Response to article Sunday Times 23rd January 2011 by Lois Rogers

Despite the passing of time and attempts to diminish the seriousness of the above article, I finally felt compelled to write the following response. Can it ever be too late to speak up for those who are the unheard DISTANT VOICES.

DAMAGE DONE - THE 6,000

Newspapers are always full of horror, infidelity, scandal and the detritus of life, that can leave us feeling helpless to bring about change, or, on the odd occasion, helpless with laughter at the bizarre and downright, unbelievable. So it is in this way that those wishing to have control for good or evil, deliver little bits of information that cause a puff of indignation or a tremor of discomfort. This being so, it is rare that an outcry brings about change or indeed a u turn, we can save the trees, which is good, but we seem nowadays unable to save each other; such is the barrage of information and the roll of the propaganda machine that keeps us, dim, tired, mistrusting or impervious to the truth. We appear to be unmoved past the point of charitable giving, preferring to just get on "liking what you've got to do." Or to quote, since it seems apt, from Huxley's Brave New World, inured to the belief that, "the secret of happiness and true virtue" should be, "making people like their un-escapable social destiny." True in 1932, and sadly, true now.

And so, it was in my usual readings about euthanasia, of which there are a multitude at the moment, it being almost one might say 'in vogue,' and causing a few puffs of indignation, nothing that will cause a u turn, too many trees there, definitely can't see the wood. That I had pause, no, not pause, more of a shudder, a shudder that sank down the ages and sent me running for my history books.

You see there it was, right there in the Sunday Times, set in a diatribe of sentimental rhetoric, a plan, a mission, a request for a list no less, to review the 'inappropriate lives' and I assume possible deaths of 6,000 people. People residing as those with so called, 'permanent vegetative states,' or PVS as it is ubiquitously called by some medics. Some classed as 'minimally conscious states' and others in comas, whose brains are thought to be in a state of necrosis, that means curtains for you, or any relative that gets this diagnosis.

What I can't understand is why would a neurologist, in this case Professor Lynne Turner-Stokes of Kings College London, who is also Chair of Academic Rehabilitation at The Cicely Saunders Institute. She must know about the issue of consciousness and the blurring of its boundaries; so, why would such a person ask for a list and presumably information about how people are? The professor is leading a review, funded by the Royal college of Physicians. She states that, "Fundamental changes in medical practice are expected." Already I'm scared. What does this mean?

She goes on to offer some advice to us all, she says, "We need to take a deep breath and consider whether doctors are striving to keep people alive in 'inappropriate circumstances.' We wouldn't want to do that, would we?"

No-one is saying these are easy circumstances to find one self in. You see I know, I know because I was 'locked in' for 5 months, unable to move or communicate, the only method of being understood was my right eye, which when I blinked was largely ignored by the nurses and doctors. I was beaten regularly by a male nurse who clearly was to mentally ill to be anywhere near vulnerable people, he never paid for his crime but I continue to do so. Okay, so my brain wasn't damaged but it might as well have been for all the notice that was taken of my desperate attempts to get help for the pain and stay alive. Imagine, what it would have been like without my tiny link with the world, without my clownish winking, my yes and no. Imagine if I'd signed an Advanced Directive, a passport away from my little boy to a destination none of us know, and from which none of us can ever, ever, return. If I had never known that the human spirit fights to survive even under the worse circumstances and that you can never, ever know how you would feel, until your there, in that hopeless place, where all, and I mean all, that your left with is hope. I might have, probably would have, failed their test, been taken off the list, taken of all the lists, for life, forever; forever without my son, without my light, my future.

So what dam hope, for those without even an eye? Well I'll tell you, since this appears to have been omitted, this, literally, life saving, information.

The information comes from many quarters here are a few of them.

First comes, Dr Adrian Owen, now the holder of a research project which is at the cutting edge and forefront of research, at Western Ontario Canada. Then Dr. Nicholas Schiff, of Cornell Medical Centre, who remembered the axiom taught by his medical peers when considering brain injury, 'damage done,' he no longer believes this to be true.

Others working for change are, Mariano Sigman, Tristan Birkinstein at the University of Cambridge I could name many others, but I think you get the point, are all at the cutting edge of new work, work that has made amazing discoveries.

This work has proved beyond doubt that given MRI scanning and appropriate measuring tools, that many people thought to be given the disgusting title of 'cabbages' or 'vegetables,' people who are categorized as PVS, are in fact able to hear, respond to stimuli, and are most definitely very alive. Take the case, one of many, of George Melendez, who after 5 years of being in what the doctors termed a 'minimally conscious state,' was given a sleeping draft, and regained cognition, answering coherently to his mother's questions.

This was the same mother who was told, "What you see lying there in the bed. That's as good as it gets, he's a vegetable." Was this really an acceptable way to diagnose George, for something as complex, as traumatic as a brain injury?

Consider this. Why when we wouldn't accept such a diagnosis for cancer, diabetes, heart disease etc, are we willing to play ball with a witch doctor approach to a serious major illness? Because we're scared that's why. George, like me is now looking forward to living in the world, with a disability. Many doctors working in this field are horrified that such a subjective diagnosis can be made, one can only conclude that so little is actually known about brain injury that inept hospital doctors are reduce to mutterings and .......well, lies.

Take the astounding story of fireman Don Herbert, suffering from PVS for ten years, who woke up and spoke, recognised his family, and as a consequence has changed our knowledge of this condition. That is for those who are professional enough to care and who want to know. Professor Turner-stokes makes absolutely no mention of this, which is strange for a neuroscientist; she shows no interest in these cases, surely they form a unique and rare opportunity to learn and review medical attitudes and approaches.

Joy Hirsch Professor of Neuroscience at Columbia University, looked at Mariano Sigmans work and had this to say, "It's really quite appalling that we don't have better techniques to evaluate cognitive and brain states in these individuals."

It's well worth noting that recent research has revealed that about 40 per cent of PVS diagnosis is WRONG, yes WRONG. A startling statistic when you try to imagine just how many people have been allowed to die by withdrawal of artificial hydration and nutrition (ANH), or have simply had the machine turned off.

This very week I will take a short break with a group of young people. Adam who was in a Persistent vegetative State for some 5 months, his mother was told to go home and forget about him. He and his partner are soon to give birth to their first baby. Then there's Amy who adores her mum. This is the mum who after being run over and suffering from 'irreversible brain damage', was offered a 'special home' and who, taken home by her own mother went on to have a career a marriage and a child. I could go on, there are so many incidences, so many now being found to have been misdiagnosed.

But, a word of caution and it's about our fears. I said before that we don't question, we don't ask for more, because we're afraid. We look at the person who is ill and we feel lost, devastated, afraid of the future, afraid we won't cope, of course this is a normal human response. Indeed a good part of our hesitation comes from a strong suspicion that the help we need won't be forthcoming.......and it won't be, ask anyone who's a carer, ask my partner. Ask Mr Cameron and those making hateful, retrograde, decisions about our future.

I just can't help feeling that the really 'inappropriate' thing that's happening, is more to do with the attitude of many of the medics I've met with. Maybe they can't imagine a future that is different, you see to them we're the failures, the reminder that you can't always cure, sometimes you just have to let people live, just as they are. Let me tell you a little about my "inappropriate" life, you should know then, that with my 'differences' the many that I was left with. I taught my son at home and he passed the entrance exam to Oxford. I write and am published, I still love the theatre even though I can't get into half of them, I study the birds, I'm an autodidact, I'm a pain in the ass, I'm still on the side of the underdog even though I didn't expect to be one of them for the rest of my life. Think of all the love, all the pain, the anguish, all the mistakes and bloody heartache they'd have taken from me, think of the life they would have taken from me. Would I not be worthy of their permission, permission to live?

There are 6,000 of these patients,we are told, each costing 100,000 per year, they're asking for a "centrally funded NHS register of the large number of half forgotten vegetative patients." Isn't that clever. Now we see lines of inanimate people, drooling and wasting away. We are ready to sign on the dotted line for ourselves actually, not just for others. Oh, and by the way this includes brain damaged-premature babies and adults with incurable conditions, that's me then.

But wait, I'm not just pleading here for those who might be saved, no, that's too easy. You get your tick or cross and away you go into the great big bank of grief. We all know those who liked the numbers. They were the ones who said that 360,000 "feeble minded" people were to be sterilised between 1933 to 1939. They were the ones that said, 70,000 mentally ill people were to be put to death in gas chambers, the first to test the new machinery. Were their lives "inappropriate"? How do you decide how long's too long, to be on life support or for that matter to be disabled by an incurable condition? There's some talk of a year, well it took me 2 years before I could lift a spoon. Not good enough I bet. Think a minute. How did they know where and who these people were? Because they had a list.

So, who should live? Whose going to make the decision? I'll tell you who it won't be, it won't be me. Why? Because no one has ever asked me, and unless I speak up myself no one ever will, just in case I care or have an influence on how the monies spent. Look at the people working for and supporting Dignity in Dying, Compassion in Dying or the even nuttier SOARS, The Society for Old Age Rational Suicide the current favourite of the definitely nutty Minette Marin. Rational suicide is a bit like fighting for peace or as the saying goes ******* for virginity. Most of them are either fit, wealthy or terrified of old age. How many disabled people are speaking up for them? Very few. Where will it end.? Where it always ends with those who are too poor to escape being the first victims.

Let's take this 'deep breath' and consider these words which are recorded here by the wonderful Dr.Richard Lamerton, an expert in palliative care and a very funny man, he quotes from a nurse who was working on a ward with patients in 'inappropriate circumstances.'

"My memories of working with these patients leaves me with a feeling of worship. Their silent presence had about it an atmosphere more akin to a cathedral than a greenhouse."

Whether you believe in God or not, I'm sure, like me, you'd rather have her as a care giver than the dangerous people with their lists.

Be careful. Keep those close to you safe and seek help in the right places or you may not live to regret it. Don't forget the 6,000 and remember the others another 6,000 who grew to be 6,000,000. They're always the ones with the lists, trust me, I know.

I'll leave you with some prophetic words again from Brave New World.

'Ending is better than mending'.

I hope this particular medic never has to face the end like I did, she might find herself blinking hazily at someone with a list.