‘I’m sorry, I didn’t mean…’
Naomi sighed.
‘No, nobody does. So why say it?’
Their unmeant words continued to reverberate: ‘Just take one day at a time.’ ‘You mustn’t be selfish – think of the family. This affects them too, you know.’ ‘With the right frame of mind you can achieve the impossible!’ ‘It’s a personal challenge.’ ‘Keep smiling – think of Adam.’
For Adam the platitudes and admonitions had been a thousand times worse.
Dorothy’s face merged with her mother-in-law’s in her dreams that night, sneering, the taunts sibilant in their ferocity: ‘Murderess! Murderess! Murderess!’
15 JANUARY—Today I had another appointment with the Big Chief Wallawalla himself. I’m going to record it in some detail because my brain won’t retain all this stuff.
I am reassured that Devilish Devlin’s keeping a watchful eye on me personally because he of all people surely knows how to spot deviations from the projected path and he certainly ought to be up to speed with any new therapies. On the other hand, I didn’t want an expert eye to detect anything I couldn’t yet see myself.
He is the expert and there’s no mistaking it. But what a subject to specialise in! Hundred per cent mortality figures. Never any cures. I’m gob-smacked just thinking of breaking news like that to people time after time. What does that take out of somebody like him? And just how many poor beggars hearing the death knell want to shoot the messenger?
Devlin looked as calm and unflappable as ever. He was wearing rimless glasses. Somehow the lack of a containing frame made his eyes look even more unrestrained as they struggled alternately to peer over the plastic barriers, getting into a frenzy when the opposition won.
It was a mauve ensemble day: shirt, tie, triangle of handkerchief. I read somewhere that mauve sends out signals to male homosexuals. I looked at Devlin and tried to imagine him in the role. With those eyes? Even on a perfectly unambiguous playing field there’s scope for misunderstanding. In a game where the rules are subtle and some of the players are unsure themselves which side they’re batting for, he’d never get past first post. It’s a jolly good thing Devlin can’t scan my thoughts with his X-ray vision. At least, I devoutly hope he can’t!
At this point I had to say something just to stop him seeing into my head, so I blurted out something about hoping he was better himself. I guess I shouldn’t have expected for one second that he would let anything personal ooze around that rigid guard. He just thanked me and said he was fine. I knew he’d have said that even if he had three weeks to live. He instantly moved into asking me how I’d been. Like two acquaintances meeting casually on a station platform and exchanging civilities until the train arrived.
But that’s where the illusion ended, because of course, though I know nothing at all about him, he knows more about me, the physical me anyway – and probably more about the psychological too – than anyone else alive. He can probe and touch and test and take incredible liberties with my person; but I am instantly feeling I’ve been too familiar asking a simple non-invasive question as to how he’s feeling. Weird. *(Balance of power – add to Ideas folder.)
Anyway I wasn’t going to waste valuable time analysing that with the clock ticking in the good doctor’s consulting room. The bumph from the MND Association had reminded me of the age thing that Devlin had mentioned at that bombshell visit. MND usually affects people over fifty, so why do I get it in my thirties? He was big enough to say they don’t know. Stephen Hawking developed it in his early twenties. Why? Nobody knows.
Today he volunteered that he had been a tad suspicious when he first probed my family history, on hearing about my father dying aged thirty-seven. He admitted my GP had since filled him in on that. I mumbled something akin to an apology. He must have thought it strange that I hadn’t been forthcoming but until Curtis sneaked up on me unawares, suicide wasn’t something I ever really made eye contact with.
He asked a stack of questions and checked me over with his usual noncommittal noises in what seemed like a suspiciously long exploration of my repertoire. I was just starting to get that feeling of dread, when he gave a sudden smile. It was the first time I’d ever seen any evidence of real warmth in him, and I confess, it counted.
Overall he pronounced himself satisfied with my present condition; well, he wrapped it up in more professional language, but that’s what it amounted to. The audit over, I expected to be instantly shepherded back out into the real world. Not so. Devlin leaned back in his chair, steepled his fingers and did his utmost to look directly at me. Was there anything I’d like to talk about? He knew, he said, that people needed to take their own time assimilating information. Where was I with this? He’d be happy to discuss any aspect of MND if it would be helpful.
I was devoutly thankful I’d read the MND Association pack from cover to cover.
‘I was wondering if you could fill me in on some of the treatments,’ I said. ‘I made a list of the drugs and things but to be honest the jargon was pretty incomprehensible to someone as clueless as me.’
He was kind enough not to mention my refusal to listen to a word about drugs at my last appointment and conceded it was a daunting subject to contemplate. Was there anything specific I had in mind? I actually had the list with me, so I spread the scabby bit of paper out on the desk and started at the top. Even the names of the drugs were complicated.
‘Riluzole or Rilutek? The report said it’s had “modest results”. What does that mean in real terms?’
‘There’s some evidence of improved survival rates with it, yes.’
Survival… ahhh! The more I hear that term, the ghastlier it gets. Seems to me, living longer with this thing isn’t necessarily a positive outcome. Still, I’m not about to share that thought in this particular wigwam. Not yet.
‘But… ?’
‘Sorry?’ He looked truly mystified.
‘Do I hear a “but” in there somewhere?’
He shrugged his shoulders. ‘Well, these drugs probably only slow progression by a few months at most. Not all neurologists feel they’re appropriate.’
‘How do drugs like that actually work, then?’ I asked. Back to AO’N, journalist, on safer ground.
And I even took in the first part of what Devlin said. Apparently there’s something called glutamate, which is an amino acid that acts as the main neurotransmitter in your central nervous system. People with MND have too much glutamate and that affects key parts of the brain and spinal cord and damages the nerves. This drug, Riluzole, inhibits the amount of glutamate being released into the synapses.
I have this crazy mental picture of an old man producing excess saliva. You stick a dry crust in his mouth to mop some of it up and it disguises his problem for a while, but eventually the bread is saturated and the drooling starts all over again – and this time it’s mucky stuff littered with fragments of regurgitated toast. I want to put a bib on him, turn his chair to face the wall, hide the defeat in his eyes. I’m not so keen on the analogy by this time.
I don’t know if Devlin picked up on my vibe but he suddenly said, ‘I seem to remember you’re not personally keen on taking medication. However, I should tell you that there’s a newish line of enquiry into something called neurotrophic drugs, which may slow down the degenerative process. Have you come across those?’
I skimmed my list. Yep, there it was.
‘These drugs are chemically similar to the proteins our bodies make normally when we’re in good health, which ensure nerve cells survive and function. But the drugs are still at the testing stage. We don’t really know exactly how they work and it’s incredibly difficult to get them to the right spot. Basically, what we’re doing at the moment is smuggling them into the body disguised as other cells such as viruses – although the nasty elements of the viruses have been removed first, of course.’
I grinned at him.
‘Go in for treatment for MND and come out with HIV, huh?’
; He half smiled.
‘We wouldn’t use viruses of that sort. What we’re hoping to do is to hoodwink the immune system into believing the cells are who they appear to be. The problem is that the immune system has a nasty habit of rebelling against the intrusion of foreign cells. Other scientists have been trying to overcome this resistance by using something like fats instead of viruses to carry the genes to the nerve cells. I must be perfectly frank with you. Clever as these ideas are in theory, test results have been rather disappointing.’
‘In an odd sort of way it’s comforting to know that nature isn’t so easily tricked, isn’t it?’
‘Hmmm. An unusual line of thinking but I see your point.’
‘From the little I’ve read, I get the impression that these experimental treatments tend to be tried out on patients who are already extremely severely compromised. Yes?’
‘That’s certainly the case with some of the trials.’
‘So they don’t stand much chance of being effective anyway, do they?’
‘That is one of the obstacles in work with gene therapy, for example, and it’s one of the big problems when it comes to translating laboratory knowledge into clinical practice. There’s a tendency to limit the risk by offering it to those who have least to lose.’
‘So how does someone like me decide whether or not to try a drug or a treatment then?’
‘Well, I’m not trying to fob you off with a non-answer, but it’s way too complicated to explain the pros and cons of every option in a few minutes. I could give you some literature on the subject, so that you could see what’s already been trialled and some of the other avenues of thought that offer promise. I don’t myself really understand all the complex science behind these things but you’re welcome to see what the researchers know so far and why some of the trials have been stopped and where they’ve tried new ideas out. I should perhaps warn you, though, that it’s not a very encouraging picture so far. Most of the trials have shown no improvement. I think you ought to know that before you see this stuff.’
‘Thanks. I appreciate the honesty.’
‘It’s not all doom and gloom though,’ Devlin rushed on. ‘The brightest star on the horizon at the moment is probably stem cell work. You’ll have heard of stem cells?’
‘I don’t really understand it, except that early cells can develop into specialised cells, given the right environment. I knew someone who had leukaemia and she was given stem cells which would turn into new blood cells. Am I vaguely in the right ball park?’
‘Certainly. And what the aim would be with ALS – MND, if you prefer – would be to try to create new nerve cells using stem cells, pluripotent cells, which are potentially capable of turning into any kind of cell. Basically what it involves is taking these early cells that haven’t yet decided what they’ll be when they grow up and giving them instructions that turn them into healthy nerve cells. Very much what we’re doing with bone marrow transplants, where we’re giving a patient stem cells designed to turn into various kinds of blood cells. Turning a cell into a nerve cell is obviously different, but as far as ALS goes, from a purely scientific point of view this is the most promising development on the horizon.’
‘But?’
He looked at me with his head on one side.
‘Sorry?’
‘I feel another “but” in there somewhere.’
Devlin nodded with a resigned air.
‘You’re right. It’s an area of work that’s fraught with ethical as well as medical problems. To begin with there’s a lot of resistance in a number of quarters; people questioning the wisdom or morality of this kind of tinkering with cells. Is it ethically acceptable? There are plenty of people who would say most definitely not. But in any case, stem cell work is very much in its infancy. Even its most enthusiastic supporters would say, don’t expect any clinical trials for ALS for at least a couple of years, probably far more. And the trials themselves take years to do effectively. Nobody wants to rush into something this experimental when we don’t know either the short-term or the long-term consequences. So we are nowhere near being in a position to offer this treatment to patients generally.’
I heard the implication loud and clear: not in your lifetime. It was a fine balancing act: hope, comfort, but not too much promise.
‘Whether or not you’d personally be interested in taking part in experimental drug treatments is something perhaps we might discuss when you’ve had a chance to read more about the options and the risks and the ethical concerns and so on. I’m anxious not to raise any false hope.’
‘I appreciate that. And as you say, I need to know a lot more about the risks.’
20 JANUARY—Devlin was right on one thing. It was hard going. And it wasn’t just my resistance to taking drugs of any kind, it was dense and difficult information to understand. I gave up reading the scientific stuff after a couple of attempts, on the basis that I needed to have a better grasp of the overall picture to see these fine details in context.
So I went back to the material I’d downloaded from the Internet and some ‘self-help’ literature. Self-help has a whole new meaning to me these days. *(Add to Ideas file – Self-help.) Some stark facts leaped out at me.
‘The senses remain intact.’ There’s a pretty cruel inventor at work here. I’ll make sure you savour this thing to the full. No merciful numbing – not even of the intellect. No, you’ll be aware, fully aware, of what’s happening, you poor sod.
This isn’t really connected but it flashed into my mind. I remember the actor, Michael J Fox, talking about the ‘brutal assumption of authority’ over his life that Parkinson’s Disease assumed. And the phrase holds resonance for me now. It is a battle for supremacy. I need to fight to retain the areas in which I still have sovereignty. I need to hang on to the authority I have to be myself, to keep the ‘I’ in MIND. Consciously. Deliberately. Persistently.
And I guess that means I need periodically to take stock of where I am, what control I still have and where the defences are weakest.
‘Sphincters are not usually affected.’ So incontinence isn’t on the list. Phew! But hey, wait a minute. If your legs won’t take you to a safe place when your bladder or bowel tell you it’s loo time you might as well be incontinent, mightn’t you?
‘Sexual needs should not be ignored.’ Gee thanks, matey! Like I needed that permission. ‘MND does not usually affect the ability to have an erection or to reach orgasm.’ So it’s a matter of being creative when the old limbs become recalcitrant, then. Naomi permitting.
‘It’s not contagious.’ Well, maybe the degeneration of the nerves isn’t, but the stigma, the fear, the anxiety, they sure as hell are.
‘It’s progressive and life-limiting.’ This thought has stubbornly lingered in the cracks between my brain cells, I have to admit. I’ve come to the conclusion that slow disintegration is worse than a sudden illness that strikes you down rapidly. You have time – far too much time – to absorb the full implications of what’s ahead. It’s a bit like knowing your brakes are faulty and at any minute they’ll fail and you’ll be rushing headlong towards a precipice.
But it’s not all negative. Once you’ve accepted your own mortality, you have this unusual opportunity to work out how you want to make your mark, a time-limited chance to repair broken relationships, leave your affairs in order, get rid of incriminating evidence. Most people will cruise through the bulk of their lives not even nodding in the direction of the Grim Reaper. When they slam into a tree at a hundred miles per hour, or board a plane with a terrorist, or go into a coma, or fall down a mineshaft, some poor grieving relative has to sort out the underpants with sagging elastic, and pay the bill for back copies of ‘Naughty but Nice’. And now Cousin Billy will never have the chance to say sorry for stealing their girlfriend, and the wronged wife will never get that overdue explanation for being abandoned. Not that I have a string of wronged anythings queuing up for absolution.
Those of us ringed for the disease
don’t know how fast, or how long, or exactly when. They tell you that in your case it’s slower or faster or whatever, as if you personally achieved this distinction. But the fact remains, you do have an unexpected opportunity to put your house in order before it’s too late.
Even saying this in the privacy of this diary, it smacks of Pollyanna. I’d give it all away for the carefree unconcern of the unmarked man. I know I would. Sagging elastic notwithstanding. To hang with Cousin Billy!
‘And I’d cheerfully have sorted out the chaos to have one more month, one more week, one more hour,’ Naomi whispered. She looked up from the screen and her eyes wandered around his study at the things he had left behind. So many memories. Bitter-sweet memories.
29 JANUARY—Against my every inclination I’ve returned to Devlin’s little scientific offerings. Although I didn’t get any deeper into the jungle of technical detail, I did match up the overall findings with the simpler accounts in the other literature, so I’m getting a clearer picture of what types of arrows the big Indians have in their quivers. And it stinks.
So some drugs have ‘modest benefits’. (Modest seems like an odd word to my journalistic mind. As if its hemline is below-the-knee or it’s falsely self-effacing. I know what they mean, but I’d have chosen a different descriptor myself.) Why would I want extra time to watch myself staying alive against the odds? What’s the point? We know there’s no cure, so let’s just get on with it.
Okay, the pamphlets say there’s merit in relieving or managing symptoms. Maybe. But not prolonging the horror. Definitely not.
They can help you maintain your independence.
What independence?
I’m perfectly well aware that I’m feeling down and I know I’m being totally unreasonable but I’m not going to pull myself together. It’s a grey, drizzly, freezing-cold almost-February day and that pesky, vindictive, nit-picking bully, called Harry Bloody Mansfield, is doing his utmost to pressure me into resigning.
I WILL NOT LET HIM BROWBEAT ME INTO SUBMISSION.
Right to Die Page 10
