Right to Die

by Hazel McHaffie

  ‘Riiiight,’ He extended the word over several spaces, as if hesitant to commit himself to even hearing what I’d said.

  ‘Well, I suppose my question is, how will I know when it’s the right time to say enough is enough?’

  ‘I’m not quite sure…’

  ‘I don’t want to drag out the last bit and end up totally dependent and unable to do anything about it. But for Naomi’s sake I don’t want to quit too prematurely. My question is, will I know when it’s the optimal point in between? Would you be allowed to tell me when that time had come if I asked you to? Just tell me I mean, not actually do anything. I’m afraid that I’ll keep hanging on and maybe lose the opportunity to take things into my own hands.’ It fell out in a rush.

  There was a long pause during which I was painfully aware of my ragged breathing. Was he? When he did eventually speak, his voice was calm but devoid of expression.

  ‘We’re talking suicide here, are we?’

  ‘In a nutshell, yes.’

  ‘The optimal moment? That’s a tough one. I don’t know. The thing is, the perspective changes when you have something drawn out but progressive like this. What feels like an intolerable burden today might not seem so terrible when you get there.’

  ‘Exactly. That’s what I’m afraid of. I don’t want to put Naomi through a ghastly disintegration.’

  ‘Have you talked to her about how she feels?’

  ‘I tried. Once. She just got too upset. Wants to hang on to me for as long as poss. So I want to make the decision and just get on with it to make it easier on her.’

  ‘You could make an advanced directive.’

  ‘That’s not quite what I was meaning. It’s relevant too, I guess, but before we talk about that, say I want to go before we get to that point, could you just tip me the wink and say, “This is as good as it gets, best to do it now, you mightn’t be able to next week.” Or words to that effect?’

  ‘I’m not sure I could, actually. I see your point but it’s a very subjective thing. And the goal posts tend to move. You might say to me today, “Tell me when I’m on the brink of not being able to hold a gun steady” – let’s say. But supposing in X months time I say to you, “I doubt you’ll be able to hold a gun next week,” you might by then realise that actually not being able to hold a gun isn’t terribly significant because life is still precious. You can still enjoy good music, a beautiful garden, the company of your wife, a good book. You can still write and you haven’t finished your novel. So you want to hang on to accomplish certain things. So you say, “Tell me when I won’t be able to slip a poly-bag over my head, Doc.” And at that next stage you say, “I’m still enjoying my music, my garden, my wife, my writing, tell me when I’ll be past swallowing ninety pills, Doc.” You see what I mean?’

  ‘Yes, but that route takes me to the very position that I want to avoid. An impasse where I can’t, and nobody else should or will.’

  ‘It could do, I agree.’

  ‘So if I decide now that I’ll go to a fixed point – let’s say for argument’s sake, until I’m on the brink of not being able to attend to my own personal needs – could you make sure I do it at that point?’

  ‘I guess I could physically say you’ve arrived at that point, but I wouldn’t choose to say, “Do it now.”’ He spoke slowly in a bland and unemotional tone but I could feel the tension in the air.

  ‘Well, you wouldn’t need to say that, would you? But just out of interest, why wouldn’t you want to?’

  ‘Because I’d have a problem with suggesting you end your life. My aim is to help you have as good a quality of life as we can possibly manage. To help you live the life you have with as much dignity and enjoyment as possible.’

  ‘But if I decide this is the point at which life becomes intolerable?’

  ‘Forgive me for sounding rather patronising but experience tells me that point changes.’

  ‘So what’s your suggestion?’

  ‘That we monitor your progress. Best not to make an arbitrary decision based on how you feel now. Let’s wait and see how things go. We can try anything that will help to prevent or at least alleviate the things that you find distressing. And if that isn’t possible then we can look at the various options for treatment, and you can say which you will consider and which you want to refuse. Because, of course, you’re perfectly entitled to refuse treatment at any stage. That’s a different thing from saying, “I want to actively hasten my death.” But you know that. You’ve already declined drugs.’

  ‘Ahh, we’re in the realm of the difference between allowing to die and actively killing. The medical argument.’

  ‘Is it a medical argument? Of course, it’s doctors who tend to get asked to help people out of these sorts of predicaments. And they know that it feels different. Maybe that’s why it seems like a doctors’ cop out.’

  ‘To you too – it feels different?’

  ‘Undoubtedly.’

  ‘So even if it was legal, and there wouldn’t be repercussions, you wouldn’t be willing to bump me off?’

  ‘No, I wouldn’t want to.’

  ‘Not even if it was my expressed and sustained wish?’

  ‘I still wouldn’t want to, no. But that’s not to say I don’t have sympathy with the request. And if it was a case of unrelieved pain or distress I would be willing to give a patient a large dose of drugs to ease the suffering even if those drugs would actually hasten death. That wouldn’t trouble my conscience. My aim is to help patients die, as well as live, with dignity and in peace.’

  ‘It’s a fine line between that and killing, though, it seems to me.’

  ‘I agree. It can be.’

  ‘So, you’ll take into account my wishes?’

  ‘Most certainly. Within the boundaries of the law and my professional obligations.’

  ‘That’s good to hear. Not that it surprises me. I must say I’ve been tremendously grateful for your support with this thing.’

  Curtis shrugged dismissively.

  ‘And thanks for listening. I can’t talk to Naomi about this, so I’d be grateful if you could let me bounce ideas off you occasionally. Before the window of opportunity closes.’

  ‘I think we’re a long way from that point, but by all means. If I can help in any way – well, that’s what I’m here for. By the same token, if talking to me isn’t enough, don’t forget there are counsellors who’re trained in this sort of thing.’

  ‘Okay, thanks. Point taken. So these advance directives. As I understand it, they’re just a precaution in case you’re unable to state your wishes yourself.’

  ‘That’s one use. Recording things is also a way of demonstrating that your wish is a sustained one, you’ve discussed it with other people and they know that it really is what you want.’

  ‘In case somebody tries to argue that my current wish to die is a knee-jerk reaction to my present situation?’

  ‘That kind of thing.’

  ‘And if it’s in writing, it’s legally binding?’

  ‘If it’s drawn up under the required conditions, yes.’

  ‘Which are?’

  ‘You were mentally competent at the time it was made. You were not under the influence of someone else at the time. You were fully aware of the relevant risks and complications. And that you intended the directive to apply in the circumstances in which you now find yourself.’

  ‘And can I get just anybody to witness my signature?’

  ‘Well, they’re supposed to be independent. In other words, not stand to gain from your death. So if you have a secret lover with a love-child and she stands to inherit a million pounds and your estate in France, then she’s not a good choice of witness!’

  Curtis’s sudden excursion into humour took me by surprise.

  ‘Point taken. Keep the string of paramours hidden! Although to be politically correct, Doctor, you should have said if I have a secret lover and she or he stands to inherit!’

  ‘Ah, but please note the subtle int
roduction of a love-child.’

  ‘You’ve been studying too many creative writing manuals!’

  He grinned back at me.

  ‘If I didn’t have a directive and there was a sudden emergency, would they take your word for it, or Naomi’s, that I don’t want to be resuscitated?’

  ‘They might – or might not. Rather depends on the circumstances of the emergency. They might already have revived you before either of us are even on the scene.’

  ‘So I should have an instruction tattooed on my chest or on a bracelet or something, huh?’

  ‘We could talk about exactly how best to notify your intentions.’

  ‘And if Naomi objected?’

  ‘Ahhh. That’s a tricky one.’

  ‘I don’t want her to be caught up in some legal nightmare. At the moment I’m pretty sure her resistance is because she’s struggling with the idea of my death. I think that when she sees more of the deterioration she’ll appreciate where I’m coming from. So it’s just about what would happen before we get to that point. If she objects, it could undermine my decision?’

  ‘There are doctors who’d attach a fair amount of weight to her opinion, yes. Legally the role of the relative is to reflect the patient’s wishes, not make proxy decisions. But doctors are uneasy about flying in the face of a wife’s stated wishes in cases like this.’

  ‘So if you had my advance directive and could wheel it out duly signed and sealed that would help.’

  ‘In the end, yes – well, it might. But there could well be delays while people looked into exactly why there were conflicting messages here and I’m afraid some doctors would err on the side of caution, not wanting to be sued by a distraught family.’

  ‘So I guess I must talk to Naomi. Get her on my side.’

  ‘It would be best if she was fully in the picture and willing to represent your view, yes.’ He paused for a long moment before adding quietly. ‘Just give it time, Adam.’

  I nodded.

  The shrill of his mobile phone broke the peace of the garden and he slipped quietly out of earshot to listen attentively, only his occasional staccato questions punctuating the silences. He returned full of apologies for having to attend an emergency. My thanks were somehow lost in his parting promises to return to continue the conversation. I believed him too.

  Naomi forced herself to stay with it. If she were ever to get any sleep tonight, she must read on to other topics.

  It hurt acutely – seeing it in black and white. She had been part of the problem. Now, more than when he was alive, she craved his humour, his light-hearted take on the world. All this serious debate weighed the heavier for his absence.

  3 MAY—My spirits are low tonight. It’s not frustration this time; it’s depression. And I know its cause.

  I saw this afternoon how much Naomi is pining for a baby. And the knowledge is much more troubling than it was before, when I thought I had all the arguments buttoned up. Her sister’s two did it. Anabelle is four and Courtney is two and they really are stunners. Golden curls, wide blue eyes, dinky little noses and perfect skin (naturally tanned-looking, just like Naomi’s). They’re such affectionate little creatures and Naomi and I are firm favourites. The feel of their little arms wrapped around your neck, the softness of their lips kissing your cheek, their spontaneous gravitation towards you – well, it stirs something very profound. So I sympathise with where Naomi’s coming from.

  Anabelle is at that stage where she can hold a serious conversation and she has no inhibitions. Tells it just like it is.

  ‘Aunty Namey?’

  ‘Uhhmm?’

  ‘Can I come and stay in your house these nights when it’s holidays?’ – holding up all ten fingers and thumbs.

  ‘Please may I,’ came the instant automatic correction from Sally.

  Anabelle tossed her mother an exasperated look.

  ‘Please may I?’ she repeated in a tone of resignation, letting us know it was a formality and the question still stood.

  ‘We’ll have to see.’

  ‘And can I play with your dressing-up box?’

  ‘Please may I.’

  ‘Please may I play with your dressing-up box?’

  ‘You may, certainly, if you are very, very good,’ Naomi smiled.

  ‘I will be good. Gooder than this.’ She stretched her arms out as wide as they would go.

  ‘Wow! That’s a very big good!’

  The child skipped over to lean on the arm of my chair.

  ‘And will you throw me up in the air, Uncle Adam? Like you used to when I was ever so tiny? Like on the video?’

  The silence held its breath.

  ‘Pleeeeeeeease may you?’ she wheedled.

  Brittle laughter broke the spell.

  ‘We’ll see,’ was all I dared.

  I saw Naomi’s face a split second before she stooped to pick up Courtney and waltzed off with her, a superficial ‘Right, young lady, time to get you cleaned up for tea,’ trailing behind her.

  ‘Me, too!’ Anabelle shot after her, leaving Sally and me stuck in the footsteps of innocence.

  ‘I am superfluous to requirements when you two are around,’ she offered.

  ‘Novelty value, that’s all it is.’

  By the time Naomi returned with the children we were all back into the pretence of normality. But under cover of the noise and excitement I noticed the softened expression, the lingering touch. I saw the way the girls chose Naomi to sit beside them, to read the stories, to wash their hands. I saw her face. What right have I to deny her her natural fulfillment? It might be too late when the opportunity comes again.

  Sitting here now I’m aware of my own yearning. I have an over-whelming desire to create with her the child she longs for.

  Maybe…

  Naomi shrank into her jacket, wrapping her arms around her body, staring at his inner thoughts.

  He had completely misread her expression that day. Anabelle’s innocent request to be thrown up and caught had brought the reality of Adam’s deterioration surging into her consciousness. She would not have wanted him to take such a risk.

  Her every instinct was to clutch the children closer, guard them from the unseen danger. How, then, could she have his baby, only to have it snatched away for its own safety, its own father part of the lurking hazards she would shield it from?

  And that thought had made her shrink from him that night, from his teasing, ‘Now, as to baby-making…’, from his tempting touch. Pleading exhaustion. Needing time to unravel her turbulent emotions.

  The cruelty hit her foursquare. Just when she was steeling herself to accept the inevitable, he was preparing to bow to her instinctive need.

  Maybe Stella was wrong. Maybe it would be better not to know what he had thought, what he’d felt. She could cling to her own comforts.

  She buried her face in Noelani’s pulsating fur, torn by her own grief. Then with dragging steps she left the room, emptiness echoing everywhere in her mind. She made herself a mug of hot chocolate. Slowly. Mindlessly. She let the cat out. Waited till she returned.

  Maybe she should read one more entry. If she could just conjure up other pictures in her head…

  4 MAY—Well, my first efforts to provide an heir(ess) met with conspicuous failure! Good thing my self-confidence in that department is fairly robust or it could have marked the beginning of deep psychological hang-ups and sexual dysfunction.

  Naomi closed the file abruptly, switched off the computer and left the room.

  The pain was physical. She wouldn’t read any more.

  Stella didn’t understand.

  But at least she wasn’t asleep long enough to be haunted by the dreaded nightmare.

  7 MAY—One hell of a day. Harry spitting blood. Working until 3 AM re-writing a piece just because he was beyond listening to my rationale for focusing on world pollution.

  It was eight days since she’d resolved not to read any more of Adam’s diary. At first she’d known relief, but a growing c
ompulsion had undermined her determination. She would proceed with caution. Limit her dose. Maybe skim in places. Perhaps even omit any entries that looked as if they’d be too harrowing.

  Harry was safe ground.

  8 MAY—Naomi was away before I even surfaced this morning. And out at some office do until midnight. Her absence meant I could lose myself in Aidan’s life until I fell asleep on the desk. Another three chapters written. Brilliant therapy, as ever.

  9 MAY—Poor old Naomi. She’s always had a more dodgy digestion than me but she sure was vomiting her heart up this morning. Reckons it’s down to the prawn soup she had yesterday, on a stomach already weakened by that blessed D & V bug. She dragged herself off to work looking wan enough to be sent straight back again by anyone other than a Harry look-alike; but she says she perked up again by coffee time.

  Her indisposition, minor though it is, made me think again of my coming dependence on her.

  What if she really was ill?

  How would I feel about anybody else invading my privacy? The honest truth? Sick to my stomach. I don’t even like to think of Naomi doing the basics – for different reasons, of course.

  So am I going to let myself get to that stage?

  Which bits of personal care are beyond my tolerance zone?

  Is that when I say goodbye?

  And if she were to become ill, do I say farewell sooner? Leaving her ill and bereaved?

  Hello?! Reality check.

  Am I all kinds of a self-centred git or am I really thinking of her in all of this? Seems to me, she and I are intertwined and you can’t actually see just where her interests end or mine begin.

  So the next question is, how does she feel about looking after a cripple?

  A cripple.

  In a way that word sounds too sanitised. It conjures up somebody with gammy legs; it doesn’t encompass this global disintegration. But I’ve seen MND called a crippling disease. And these past few weeks I’ve been feeling the aptness of that descriptor for where I’m at at this moment in the trajectory of my incapacity. My feet seem to be hinged too loosely at the ankles. And I’ve succumbed to the temptation to hang onto things as I get about… in case. I’ve fallen with a fair whack several times and Naomi says if I end up in Casualty she’ll have a hard time proving my bruises aren’t down to her. I’ve told her I’ll be fine in a home for battered women, all those needy females looking after me.