Right to Die

by Hazel McHaffie

  ‘Real life always transcends the rule books,’ he said quietly. ‘I’m more concerned with why you want to take this particular way out.’

  If he couldn’t see that, he didn’t deserve any help doing his job.

  I was gentler with the SHO, the most junior link in the medical chain. Poor bloke, the last thing he needed was a clever-clogs patient undermining his rote-learned tenets. He’d obviously had a hefty dose of training in bedside manners. He explained every single thing he was doing. Inside my head I screamed at him: stuff your potentially reversible apnoeic episodes where the sun don’t shine; go hang your targets and your aims on the firing range; sling your fluid balance on the other side of the scales. I’d be far more grateful if you’d simply allow those little physiological imbalances to get way out of control. I was careful each time to thank him for his services.

  But the hurt from these men was as nothing to the overheard comment from one agency night nurse, talking in a penetrating stage whisper at the nurses’ station. Patient confidentiality had clearly been omitted from her curriculum. Apparently a teenager called Trixie had been admitted for the sixth time with slashed wrists.

  ‘Me? I’d just leave her. I’ve no patience with these time-wasters. I didn’t come into nursing to pander to people who just want attention. It’s her choice. There are plenty of poor sods who are genuinely ill.’

  I devoutly hope Trixie never comes within her personal ambit. On the other hand… she could be just the nurse for me.

  Joel has been subdued. He’s been here since the day I was admitted, and he seems unable to let Naomi out of his sight.

  And where was Hugo Curtis in all of this? He did visit me; two days into my hospital stay – at least outwardly it was the shape of the Curtis I know – but he seemed ill at ease in the hospital environment. His polite doctor-questions probed my physical state, my comfort, my pain management, he reiterated the cause of my choking, he outlined steps I might take to avoid a repeat performance. Stilted, superficial. But as he left he dropped his voice and promised to come and see me when I got home – ‘We’ll talk some more then.’ Is he fearful of his role in this? Afraid for his career?

  All these people suddenly wary, not daring to name the dread. All because of my answer to an intolerable problem which none of them can (or will) solve.

  Naomi had lived in moment-by-moment dread that she would be the one to say the wrong thing.

  Without Joel she’d have broken down under the strain. But he’d been brilliant. He’d been there at the house when they returned from Madeira. He’d been there for her when the tears finally came. He’d sat with Adam through the long silent hours while they each grappled with what had happened. He’d dropped everything to fly to Adam’s side when he’d ended up in hospital again this time. But even he couldn’t rid her of the sense of failure.

  ‘It must be my fault. I’ve let him down. I shouldn’t have gone off that day,’ she’d wailed.

  ‘Now you’re being daft. You’re his world. You’re his reason for hanging on this long, for goodness’ sake.’

  ‘But he isn’t happy. He’s still here, but he doesn’t want to be.’

  ‘Well, can you blame him? Good grief, Naomi! What does it do to a guy with a brain like his, to be trapped in a body that refuses to do what he wants it to do? How does he sleep at all, knowing what’s ahead? The only wonder is that he’s cheerful any of the time. I’ve got about a tenth of his talent and I’d have drowned myself on the day of diagnosis!’

  ‘Would you? Would you really?’

  ‘Too right I would! And if he didn’t have you to think of, I’m pretty sure Adam would have gone long before this, too.’

  ‘Is that what he said?’

  ‘Not in so many words, no. But I have eyes and ears. And he’s hinted as much.’

  ‘So it is my fault.’

  ‘Course it’s not! But I’ll tell you something for nothing: you’re exhausted. You’ve got to get extra help. It’s completely batty trying to do this on your own. I know you want to – Adam told me he wanted you to have help, but you refused. Far be it from me to come between a man and his wife, but he’s right, Nay, you can’t keep this up. It’s far too much work physically. And it’s going to put a strain on your relationship too, if you don’t watch it. It’d be better for him to have professional people telling him what to do and how to do it. He’d take it from them – well, he might anyway. Although we both know what a cussed blighter he can be when he sets his mind to it!’

  ‘Dr Curtis said something like that too.’

  ‘About him being cussed?’

  ‘No! About me needing help.’

  ‘There you are then.’

  ‘But you know how much he needs his privacy.’

  ‘Yep. But the way I see it, he doesn’t have much choice now.’

  She dragged her eyes back to the screen.

  Once they’d stabilised me, the hours between visiting times hung heavily. Nothing held my attention for long. Reading, radio, crosswords, even writing; everything felt remote or of no consequence. I managed to get to the common room on my third day, but a king-size TV ruled the space. Everlasting soaps and gameshows.

  I had my fair share of visitors but, I don’t think it was my imagination, most of them were glad when it was time to leave. It’s hard work understanding me now. Naomi and Joel are used to deciphering my convoluted sounds but they had other reasons to dread coming. Being in the presence of someone who wants out of this life, who prefers death to their company. The knowledge lay between us all the time.

  Sally and Matthew came once but didn’t stay long. I had no idea how much they knew; I stuck to their agenda. They brought hand-made cards from the girls. Anabelle’s depiction of my hospital ward was as nightmarish as my reality.

  So no one who came to see me had it easy and I breathed a sigh of relief when the bell went each evening to signal an end to this forced, artificial conversation. I just needed to be left alone – to think.

  It’s doubly lowering, now I’m back at home, feeling their unspoken recrimination and dealing with my own disappointment.

  4 MAY—Sunday. Church day. I felt a compulsion to go somewhere today. Not to my mother’s church – I’m certainly not robust enough to deal with her disapproval!

  Not yet.

  Naomi agreed, after some persuasion, to take me to the local kirk. It’s tiny and very old. Beautiful and very hallowed. And within a walkable distance. Joel insisted he would come too, ‘to push my chair’. He could have waited outside, or gone home and returned at the end, but he didn’t. Just what mischief does he think I can possibly get up to in a church on a Sunday morning with seventy people all around me?

  The service, the ambience, didn’t live up to my expectations. Other people’s air of devotion jarred with my rebellious thoughts. The droning exhortation to rejoice in the bounty of the season was at odds with my passionate desire to turn my back on what this life holds for me. It was all too predictable.

  I needed solitude; to be alone with my Maker: to take Him to task, to seek answers, to beg for His help.

  But now no one trusts me to be alone.

  Naomi re-read the last two paragraphs three times. It had been like living on a knife edge. She had searched every situation for any possible avenue to suicide. When he’d suggested church she had known a surge of hope. Perhaps finding God would give him the strength to go on. There were few enough straws blowing in the wind at that time.

  5 MAY—Curtis kept his promise to return once I was back at home. Initially he stayed outside talking to Naomi and Joel for so long that by the time he sat down beside me I was not disposed to welcome him too warmly. He came to the point directly.

  ‘Are you cross that we didn’t let you choke to death?’

  I was taken aback and had to think before answering.

  ‘No, I don’t think so.’

  ‘If you swallow food the wrong way it could lead to a chest infection. Would you want us not to treat t
hat?’

  ‘No.’

  ‘Why not?’

  ‘Because it’s not the death I want.’

  ‘No, indeed. Nor is it the death we want for you.’

  He sat waiting, letting this point sink in. Or perhaps he was rehearsing his next line of attack.

  ‘You just wanted something more dramatic, huh?’ he said with a hint of a smile. ‘Throwing yourself into the ocean.’

  ‘It would have been over in seconds. I wouldn’t have known anything about it.’

  ‘You wouldn’t – maybe.’

  Again, a long silence.

  ‘And now?’ he asked.

  ‘Now what?’

  ‘How do you feel about it going wrong?’

  ‘Angry. Frustrated.’

  ‘You still wish you’d been successful?’

  ‘Yes.’

  ‘So who are you angry with?’

  ‘Myself. For not managing things better.’

  ‘Mmmmhhmm.’

  ‘And the man who insisted on dragging me off that ledge.’

  ‘But he’s not here.’

  I didn’t bother to grace this stupid remark with a response.

  ‘Do you know that we did our best to respect your wishes in Madeira?’

  ‘How?’

  ‘Do you remember Dr Wickham, the American doctor who took care of you?’

  ‘Vaguely.’

  ‘Well, when he suspected you’d taken an overdose, he rang me – Naomi gave him my number. I told him about your wish to die before you lost the capacity to take things into your own hands and that I suspected it might have been deliberate.’

  ‘You gave me the idea, actually,’ I shot out – cruelly.

  ‘I did?’ His incredulity had to be genuine.

  ‘Yep. When I gave you the manuscript. You thought it was because I planned not to come back. I hadn’t actually considered doing it then.’

  He shook his head slowly, struggling with that notion. Somewhere deep inside, my old self wanted to retract. I couldn’t even bring my present pathetic self to apologise.

  ‘Well, anyway, between us Dr Wickham and I put two and two together, and it felt counter-intuitive to both of us to pull out all the stops to save you. I was worried about Naomi though, because I didn’t know if she had any idea of your intention. The news was probably marginally better coming from someone she knew, so I told her what we suspected. She was terribly shocked at first; she thought you’d just had an accident. But I must say she coped with it all remarkably well. And amazingly Dr Wickham was prepared not to intervene actively, just let things run their natural course. I take my hat off to him. Not an easy thing for a doctor – and an American one at that – to do. Especially on the say-so of a foreigner hundreds of miles away! But… well, you came out of it.’

  I shrugged.

  ‘Not because of what anyone else did,’ he said quietly.

  ‘Except that crazy little Madeiran guy!’ I burst out jerkily. ‘He just wouldn’t take no for an answer.’

  ‘Tell me about it, Adam.’ Curtis was gentle now, reaching out to my pain. Like I’ve said before, the very man to have walking alongside you when the chips are down. Except I couldn’t afford to have anyone too close right now.

  I felt myself shrinking back into a dark space, no bigger than myself and my MND. All I ventured aloud was, ‘Is there a DNR order in my notes?’

  ‘There is. I’ll let you see it for yourself next time you’re in the surgery.’

  ‘And you’ve seen my advance directive?’

  ‘There’s a copy in your file. On that subject, we agreed we should revisit it periodically. You’ve stated specifically today you don’t want to die by choking or from a treatable chest infection. It would help to get a clearer picture of what you see as acceptable.’

  A wave of weariness washed over me. The detail seems so trivial. I just want out of this. Why does it have to be so complicated?

  By the time I re-engaged with Curtis he was talking about community support. I went through the motions of listening, but when he got around to Toni with an ‘i’, I was still sufficiently incensed to tell him in blunt terms that if I had to continue with this miserable life, there was no way I’d find space in it for that blasted woman. Writing this now, I’m quite appalled by my temerity. The poor creature’s only doing her job; it’s probably not her fault she’s inadequate. But the fact remains, she’s completely wrong for me. Curtis took it calmly. I wonder if he’s sized her up too, and found her wanting.

  I was instantly contrite and apologised for my outburst. What happened to my resolve to leave good memories? Curtis looked so taken aback I couldn’t help smiling. Only then did I see the tension lines around his forehead and eyes relax a fraction. He’s a saint for tolerating my ill humour.

  Before I knew it we were discussing a target date for him to get his comments back to me on the novel, and the procedure by which a carer or a nurse can be brought in to relieve the strain on Naomi – amicably.

  We were a team again.

  Joel came in a few minutes after Curtis went away. Thinking about it, I suspect it was to give the doctor time to talk to Naomi.

  ‘How come you’ve been able to take all this time off?’ I asked him.

  ‘You’re my number one priority,’ he said looking directly at me. ‘You and Naomi.’

  ‘I don’t want you ruining your life on my account.’

  ‘I won’t.’

  ‘That’s why I…’

  ‘I know.’

  Neither of us spoke, for what felt like forever.

  ‘You must get on with your own life. Don’t worry about me. I’ll cope.’

  ‘But will Naomi?’

  I stared at him. He held my gaze.

  ‘She can’t go on like this, Adam. She’s knocked up.’

  ‘Because of what I did?’

  ‘No, just day-to-day living. She needs help. What you did makes it harder. She’s afraid to leave you alone now, afraid of what you’ll do. But she’s just exhausted, trying to keep everything going. I can’t leave her to cope with all that on her own. I feel responsible. You’re my brother.’

  ‘D’you think I don’t know what it’s doing to her?’ I ground out, glaring at him. ‘That’s exactly why I wanted to quit now.’

  ‘Well, it didn’t work out that way and we’ve got to face the next phase of this thing. So I’m here for as long as it takes.’

  ‘I can’t have that. We’re going to have to get help in whether Naomi likes it or not. Curtis is going to organise carers to do the heavy stuff and nights. Naomi can get back to a more normal life.’

  Joel nodded.

  ‘How d’you think it feels… being the cause of this?’ The words slurred out raggedly.

  ‘I can’t begin to imagine,’ he said, gripping my arm fiercely.

  What a struggle it had been, giving way in inches.

  At first she’d said she’d hand in her notice. He was much more important than work. He was adamant: she must not. She’d go part-time, then. He refused to countenance it. And he held the trump card. If she insisted on sacrificing herself, he’d find a way of cutting short her sentence.

  A part-time carer had been the compromise, enabling Adam to retain something of his coveted solitude, Naomi her job. A personal alarm took care of potential emergencies. But guilt and anxiety remained her constant shadow, even though she still took every opportunity to do things with and for him.

  If only she’d had access to his diary then. If only she had really understood.

  9 MAY—We had dinner guests yesterday. It was a longstanding engagement, churlish to call it off.

  Geraldine is a colleague of Naomi’s; a social worker who specialises in fostering. She’s a quiet, self-effacing person and in the past I’ve wondered whether families brutalised by life respect her at all, she seems so entirely lacking in authority.

  Under other circumstances I’d have enjoyed the challenge of drawing her out on the problems of deciding what makes a goo
d foster parent, or adoptive family. But now? I sensed her unease throughout the evening. Having to ask me to repeat myself so often only added to her reluctance to prolong any conversation directly with me. Naomi’s interpretations seemed too blatant to me, but Geraldine turned back to her with obvious relief. I guess you need the cement of real personal friendship to persist in this game, not second-hand obligation.

  Wilf had no such sensitivities. Difficult to see what possessed Geraldine to share even a week of her life with him, never mind eleven years. He’s a prize prat, as puny in his intellectual capacity as he is unattractive in his person. I was reminded of John le Carré’s pithy descriptor: he’s someone who thinks ethics is a county east of London.

  After that experience, I am resolved not even to attempt to eat in the presence of guests ever again. On my own, or with Naomi, I can just about cope. Ursula Major put me in touch with splades. More than one utensil is a recipe for disaster; one that combines knife, fork and spoon, offers my best chance to stave off the need for assistance.

  Her other suggestions don’t bear mentioning!

  That meal had indeed been a distressing event, one that Naomi had been in no hurry to repeat. She hadn’t missed the pitying looks Geraldine cast at Adam when his whole attention had been focused on skewering a broccoli spear or a piece of cheese. She too had resolved this would be their last invitation.

  How painful, all the ‘lasts’.

  16 MAY—Digby Arkwright called on Monday.

  Polly, my morning carer this week, had left me more than usually comfortable, packed around with cushions at my machine, and I said a special prayer of thanksgiving for Ursula Major’s idea of an intercom at the front door. I didn’t have to stir a muscle to let in this Father Christmas of a visitor, so I was at my physical best when he marched in, filling the room instantly with his good-humoured presence. He’s always welcome but today he brought with him a special commission. He wanted me to do a retrospective, tracking some of the lighter moments in my life as a columnist over the years. No hurry – just when I can fit it in.

  Was this his way of handcuffing me to life? I find it hard to believe he was being devious, but…