Not long after my father died, I found myself cuddling the dressing gown he had been so anxious to always have with him in his last days. I had come to think of it as his security blanket (now mine), the one thing he kept between hospital and home that signified safety and some small control over a world gone ludicrously subordinate to the wicked cells that were taking his life, first by slow inches, then by relentless rapid force.
I remember holding the old white terry robe in my arms and inhaling its fragrance (not altogether nice by that time, but still, altogether Dad) and ended up slipping it on; familiar with the heavy cotton and pulled threads and giant stretched and shapeless pockets from the many, many times I’d sequestered it over the years, traveling home for a week or a weekend and never bothering to pack my own. (It’s one of the many things I miss about having a parent – all the liberties taken; shirts and hankies and hairdryers and money borrowed with little thanks and virtually no thought of return or repayment. It’s not the stuff you understand: it’s that there were people on this planet who belonged to me, and I to them in a million very personal and proprietary ways.)
But this time the robe felt heavier than usual; the hem weighted in a way that made it swing and bump against my shins. I took it off and turned it upside down and examined the crude stitching that had clearly replaced the once neat factory finish. I ripped and I tore and I shook the damn thing until out rolled several handfuls of pills and a few capped syringes; a hidden stash of drugs that if not capable of killing a horse, would likely have been sufficient to polish off my father.
I didn’t have to puzzle to know what I was seeing – it was his last vestige of control. I saw in a moment what he had planned to do if it all became too much, his dressing gown the one item that would likely always lie within reach even were he in extremis.
We both knew what the alternative could be like. The way my mother had died – in pain and fear and (until she was anaesthetized to the point of coma) begging for someone to help her leave. But more than 20 years ago we didn’t know what to do or who to go to (had there been someone to go to) and we were terrified at the implication of what she seemed to be asking us to do.
This is what my father learned. And though he didn’t have to take that option in the end, I realize now how much that small bit of jurisdiction, that infinitesimal piece of power must have meant to him; how it must have soothed and calmed those fears of the ultimate agony – to be aware, conscious and out of control.
I was glad he’d had his hem-full of hemlock.
So though very different, the Terry Schiavo controversy and the right to die how and when you please has my full attention these days, hitting several of my most sensitive buttons. And I have some small insight into the business of brains, having worked on a definition of neurological death for the government agency that coordinates organ transplants for the province of Ontario.
There are some absolutes – absolutes that are if not a comfort, are at least a means of answering the complex questions of what constitutes life or death, and possibly a help to people trying to fathom how it is their loved one can still be breathing, still have a pulse and a heartbeat – but be for all of that, dead.
I’ll quote myself if you can stand it…
Neurological Determination of Death – a definition:
A diagnosis of death by neurological criteria (also referred to as “brain death”) means the brain has permanently lost all function.
This is how we expanded on the definition in the informational pamphlet designed for families searching for answers, so as to make the meaning absolutely clear:
As a result of the severe brain injury or trauma your loved one suffered, the accumulation of fluid, blood, or a swelling of the brain cells has caused pressure to build inside the skull, making it increasingly difficult for life-giving blood and oxygen to flow into the brain. Since the bones of the skull create a space only slightly larger than the brain, as the pressure increases, the brain soon has no place to expand. The pressure then builds rapidly to that point that all blood flow from the veins and arteries supporting the brain are completely blocked and all brain function ceases. Without oxygen the blood delivers, the brain begins to die immediately. Once the brain cells die there is no way to bring them back to life; the brain itself dies and no longer functions in any capacity – and never will again. When the brain dies, the person can no longer breathe, move, think, or feel. Neurological death is permanent and irreversible and there can be no hope whatsoever of recovery.
Neurological death IS death.
So, clearly by that definition, Terry Schiavo cannot be described as neurologically dead. But the brain injury that didn’t kill her brain completely may have left her with life in its simplest form, with no more thought nor will than the most primitive organism, deprived of virtually all that makes most of us want to live – the simple control of conscious thought and the ability, however small, to influence our environment.
I learned that lesson many years ago during my gap year between high school and university – a year in which I was a sort of teacher’s aid at a school for the most severely mentally and physically handicapped children in Calgary. I loved it right away, but went in to it with the kind of zeal seemingly reserved for enthusiastic yet totally uninformed teenagers and certain Presidents of the United States: people who think they can fix everything with a simple blend of want and will, mixed with evangelical passion and just a slightly overweening ego.
But what I learned within a week was that we weren’t going after the ‘Eureka’s!’ and the miracles; we were doing something much harder, that required just as much enthusiasm and want and will to achieve, but required no evangelism or ego whatsoever. The goals we had were for communication, and the communication we were most hopeful of eliciting was simply the sort that gave a child the ability to indicate what he wanted – the red one or the blue one… this one or that one… chocolate or strawberry…And sometimes – just sometimes – we were able to. And when we did it was huge – it was control; the ability to choose. I want THAT one.
Terry Schiavo, except in her mother’s loving imagination and the opinion of a very few family-picked medical consultants, chooses nothing. She lives in a hospital bed in a hospice, surrounded by the feeding apparatus and the multiple shifts of professionals it takes to keep her alive day in and day out. Her husband – once a beloved family member – is now cruelly at odds with Terry’s parents, having indicated many years ago his desire to carry out what he insists are Terry’s wishes; wishes she discussed with him before the drug reaction that changed her life forever. He says she was clear that if such a situation were to occur, she would choose to be removed from all life-sustaining equipment and be allowed to die.
It’s not so unbelievable; I don’t think I know a single person who would wish otherwise. But the question remains: how dead is she? And, what even remote hopes are there for any sort of recovery?
Most doctors describe her as being in a ‘nearly complete vegetative state’, and the video tape captured by Terry’s parents that has been repeatedly played in the media – where she appears to be conscious and possibly even making eye contact – is viewed by many experts as nothing more than instances of random motor reflexes, the kind that are sometimes even observed in patients diagnosed as neurologically dead. Even the most ardent supporters of Terry’s continuing in this twilight existence have not much more hope for her rehabilitation than that she might one day be taught to swallow. The absence of which ability at this point seems a nightmare in and of itself.
The debate is terribly disconcerting and upsetting – not the least to Terry’s parents and presumably other individuals currently going through similar tragedies with family members or loved ones. But what may be even more disconcerting to some is the ongoing and insidious interest shown by congress who spent the weekend debating the issue before voting to approve legislation that would allow a federal court to intervene in the Schiavo matter, potentially ordering Terry’s feeding tube to be re-inserted.
The irony of the President breaking off his holiday in Texas in order to fly back to Washington to sign the legislation as quick as a wink, when he could barely interrupt his backswing to comment on American troops in danger in Iraq, is not lost on a number of observers. The interference on the part of the government, the ease and comfort with which they once again enter the bedrooms and the minds of citizens is breathtaking in its presumption.
The Christian Right and the president they support once again seeks to trump the individual, the right to die, and the right to control one’s own body - to have one’s deepest and most heartfelt wishes respected.
But what do I know? I know that at the height of the dissonant discourse, and even with my own views and experience as plain as can be, I still feel great empathy and sorrow for Terry’s mother, who just as plainly feels her daughter is in some significant way alive. But what life? And, to borrow from playwright Brian Clark, whose life is it anyway?
It’s not that Terry’s life isn’t valuable – it certainly was, and the memory of it remains so to those who knew and loved her – it’s just that it isn’t viable. And whatever else it may or may not be, the tragedy of it should not be allowed to be exploited for either political or personal gain. There’s no question the Christian contingent want this issue and that of abortion front and centre on the agenda – there’s little doubt they feel it personally and passionately. But it’s not their life to direct, nor their life to control.
If it could be controlled – in even the smallest of ways – it should be Terry’s to choose. Failing that, the law as it exists suggests it lies with her legal guardian, who tells us that when she was in full living control of her life, she said she would want to be allowed to die if she found herself in her such circumstances.
She doesn’t have a drug-riddled bathrobe somewhere close by her bed to comfort or keep her, or the ability to remove the pills, or even to swallow them if she had them. But it’s worse; the horror now is that the entire government of the United States of America is seeking to compound the tragedy that befell Terry Schiavo following the heart attack that caused the severe brain damage that robbed her of anything resembling a life back in 1990 – now they want to control her.