At our table there was the customary banter you get with a gathering of wordsmiths, but I became increasingly aware that the conversation was carrying on around me not with me. When I did speak, they didn’t seem to pick up what I was saying. I know my voice is weaker these days; I didn’t realise how pathetic I must sound. I can’t compete with the racket of a crowd any more. A sobering epiphany: the party – life – carrying on without me. Naomi reckons they were only trying to save me the effort of raising my voice. I say they were ignoring me. It’s probably impossible for them to get it right but I haven’t the space to make concessions on behalf of people for whom everything is so easy.
I sneaked a look at some old videos this morning. I needed to know I was once a normal bloke with a normal voice and a normal walk and a normal zest for life. Once upon a time.
I was. But it just made the reality of today even worse.
I’ve made an appointment to see Arkwright later this week.
Naomi slumped back in the chair. The tragedy of his deterioration had struck her forcibly that night. She too had seen the discomfort, the uncertainty, around him. It had been a turning point for them both. She hadn’t forgotten his problem remaining upright. She hadn’t. Intuition clamoured: whisk him away to the relative comfort of home, bolster his self-esteem by concentrating on what he can still do. Logic denied her: he must set his own pace. He’s always wanted that.
Adam had been so quiet on the return journey. Only later had the flood-gates opened as he poured out his despair. She’d listened in appalled silence. Until he got to the subject of the deterioration in their sex life.
‘Oh, come on!’ she interrupted. ‘You ought to be mighty thankful we don’t need any outside help for that! I saw a film once where somebody had to wait at the door to go in at strategic moments to give a disabled couple a hand. We haven’t come to that, at least.’
And how empty the nights were now, without him.
‘Oh Adam! I miss you so much! The sound of your laughter… the twitch of your eyebrow just before some silly wisecrack ... the look in your eyes as you reach across to touch my face ... your fingers walking down the bones of my spine, slowly, one by one… the warmth of your body… Oh, how I miss you. The real you.’
4 JANUARY—Life stinks. I hate what’s happening to me. Hate it, hate it, HATE it! I’m sorely tempted to hop on a plane to Switzerland tomorrow. But I know in myself that I haven’t reached my own nadir yet. My novel isn’t finished, I’m not ready to say goodbye to Naomi… or Joel. And yet objectively, I must meet the clinic’s criteria: an incurable illness, a sustained desire to die, fully mentally competent. Some of their clients have had nothing more life-threatening than epilepsy or diabetes. But… if diabetes is an intolerable burden for you… Curtis, where are you?
These clinics apparently have hundreds registered, booked in way ahead of time. Should the patient always know best? I read somewhere they’re thinking of making it obligatory for foreigners to have lived in their country for at least a year before they’re eligible for assisted suicide. You can see the rationale, but what a hassle! I’d sooner park my car on a railway crossing here.
Maybe the powers that be in this country will take pity on people in my predicament soon. It may be a criminal act to assist someone to commit suicide at the moment – you risk fourteen years in prison – but the Assisted Dying Bill keeps coming up for debate. They won’t give up on this one; the argument for it is too strong. It’s no longer the tiptoe of the tiny minority. And much as I want to see it passed, I’m all in favour of caution. It has to be carefully regulated. We don’t want some half-baked plan, botched jobs, general fear and mayhem all round – although I’m not about to concede that to Curtis just yet!
What makes life intolerable? At what point in my illness does my decision become fixed? I conceded a point to Curtis when he called in casually.
‘I hate to admit this, Doc, but you were right.’ I slurred.
‘Goodness. Are you ill?’ He grinned. ‘On which subject exactly did I reach a pass mark?’
‘The goalposts changing.’
‘Ah, yes.’
‘But I still think it has to be my decision.’
He simply waited; no chivvying, no filling in my sentences for me. That’s worth a lot these days.
‘Somebody else inside my disintegrating body might say, “I don’t want to go on.” Pretty much anybody thinking about my problems might say, “That’s intolerable.” But when will it be intolerable for me?’
‘Time for me to say, “Only you can say,” huh?’
‘Steady now! Let’s not start out-conceding each other! Where will it all end?’
He laughed, looking suddenly much younger.
‘If I keep procrastinating, I’m in danger of losing that window of opportunity for being able to do it myself.’
He just nodded.
‘I haven’t the strength and courage to fight the medical and legal establishments. Nor the time.’
‘Hopefully it won’t come to that.’
There was a long pause – tolerable between old friends.
‘You were right about the things I might want to live for. My book, Naomi, Joel, children.’
‘Mmmmhmm.’
‘Gee whiz, all this… and no argument? You sickening for something?’
‘I’m just enjoying the peace and harmony while I may. Unless I’m much mistaken, we haven’t finished yet.’
I sighed.
‘Spot on. We come to the little matter of implementing that decision… when the time comes.’
‘You can refuse treatment, remember.’
‘But your mighty ethical consciences would still baulk at anything more than that.’
‘Well, maybe not. Ahha! I thought that might take you by surprise! Let’s say something happened and you needed emergency life-saving treatment. If they knew your expressed wishes – documented preferably – two doctors might agree that, given the prognosis and the effects of the disease itself, it’s perhaps best not to initiate that treatment.’
‘Would you be prepared to go along with that? Not treating, I mean.’
‘In the right circumstances, yes, I would.’
‘Strange that. I’d have thought that people like you would find it incredibly hard to just stand there, doing nothing, and watch someone you’ve taken care of just… die.’
‘Oh, I didn’t say we’d do nothing. We’d do something. We’d pull out all the stops to ensure your dignity and comfort.’
Curiously, I liked the way he didn’t try to de-personalise this.
‘I don’t know how these nurses I see in hospitals and Homes do the things they do. There’s no way I would ever want to clean up the backside of some doubly incontinent stranger, or mop up the vomit, or even trim their toe nails. These folk have to really care about people. And surely if they couldn’t let them lie in excrement, they couldn’t stand by and just let somebody die who might be saved… could they?’
‘If there’s a clear and sustained wish for non-intervention in the case of advanced and degenerative disease, yes. They can and do. That’s not to say they wouldn’t feel sad about it. Maybe even regret it.’
‘Fair enough.’
‘Can I put a different scenario to you?’ Curtis said after a brief pause.
‘Fire away.’
‘Imagine you’re lying there unable to communicate but you can hear what’s happening around you. The doctors hover just outside the door of your room…’
‘Good. You’ve given me a private room I see. Thanks, Doc.’
‘No problem. I’ll try to remember to pull a few strings, when the time comes.’
‘I’ll thank you now, then, in anticipation.’
He grinned broadly.
‘Where was I before I was so rudely interrupted?’
‘The doctors are hovering outside my palatial suite of rooms…’ I said in my best story-telling voice.
‘Yes, right. And you hear them say, “It’s not
worth doing anything for this guy. Just let him go. He’s better off dead.” How would you feel?’
‘Vexed that my taxes had helped to train such an insensitive moron.’
‘Indeed! But after that?’
I pondered the thought.
‘Would I mind someone else agreeing that my life is worthless? I don’t know. I’d feel a bit of a reject, maybe. So does this mean I secretly want people like you to refuse to let me die because you value me too highly? I’ll need to think about that one.’
I have a sneaking feeling that there’s a flaw in this thinking somewhere but I can’t afford to be deflected too far from my principal question. No doubt Fuggins would have spotted it. He knew two and two didn’t equal five in real life.
‘Hold on a minute! I don’t want to die from inactivity. By default. I want an active decision to be made. A logical, rational, thought-through decision.’
‘I know. Hence the terrier instinct!’
‘And suddenly you’re not with me.’ It was said entirely without rancour.
‘Well… that would depend.’
I stared at him for a long moment.
‘Don’t tell me you’re actually relenting.’
‘Not relenting exactly. Exploring the possibilities, maybe.’
‘Well, hallelujah!’
‘Time changes the situation,’ he said quietly. ‘For me as well as for you.’
‘Are we talking about helping me?’
‘I am. And I presumed you were, yes?’
‘Yes. So… I’m suspicious now. Are you saying that you might… help me?’
‘I want to help, yes. That was always my intention. Now you’re talking about a point much nearer a natural end, I’m qualifying my earlier response.’
‘Ahhah. The careful obfuscation we know and love!’
He laughed aloud.
‘So you’re not agreeing to give me a generous gift of morphine to send me on my way rejoicing?’
‘When I was a kid I liked surprise presents. My parents didn’t ask me what I wanted. I was grateful for what I was given. And strangely enough they seemed to know what I’d like. I guess old habits die hard.’
Like I say, this man is good for my health.
Thinking in this focused way about death-bed scenarios led me to my mother. I can’t see why she’s so hell-bent on hanging on to this life when she believes there’s something better to come. I tried asking her once but she just said, ‘Adam! Don’t be so irreverent. God wouldn’t like to hear you questioning His judgment. He decides.’ Maybe I’ll ask the local man of the cloth, next time he comes, to pray for me to find a way through this. Nothing to lose.
‘How could you… persist so?’ Naomi said out loud.
Exhausted by the sheer effort of daily living, when it took him over two hours to shower and dress, when simply holding his head up required a monumental effort, he still had the capacity to engage with these issues, record his thinking so… so coherently. And yet he’d so seldom shared his preoccupation with her?
‘Forgive me, Adam. Forgive me.’
5 JANUARY—Sigh. Yesterday I thought I’d got things sussed. Finally. Today a brief letter to one of our competition newspapers has made me slither sideways on that proverbial slippery slope. Damn it!
It’s by some academic who’s spent his life in a wheelchair. He’s already in his seventies but he really, really wants to go on living. He’s got some elaborate system in place which means no one else can say he’d be better off dead, let’s not resuscitate him, or let’s not give him food and drink; it’d be a kindness to let him go. If anybody manages to avoid all his documents and directives and his army of advocates, his relations are primed to hound them through the courts. However, if everyone agrees he’s past saving, then death is to be swift and painless. The whole shebang signed and sealed by his own hand.
You have to admire his sheer… well, I don’t know... grit? Bloody-minded determination? Here he is, a man who’s obviously had his fair share of difficulties in life, but he reckons his quality of life is good and he doesn’t want it ended a nanosecond sooner than it ought to be, and he doesn’t want somebody who doesn’t know the inside him to decide when that moment has come.
His bigger contention is that there is too much time and attention devoted to endlessly debating euthanasia and assisted suicide issues; efforts ought to be concentrated on providing robust support for folk like him, giving them as much control, as much say, as much independence, as possible. Hhhhmmmm. But he roundly denounces platitudes about the value of counselling and sensory rooms and Rich Tea biscuits. Amen to that!
I had my meeting with Arkwright yesterday. That man is a real gent. He went through the motions of trying to get me to change my mind about handing in my resignation, but then, when he saw I was resolute, he offered me open-house, basically. Write as often as you like as much as you like. We’ll pay you handsomely; consultancy rates.
I came out of that meeting feeling like a winner. I’m going to be free of meetings and administrative slog. Free from Harry! And free from the pressure of deadlines. But free to write creatively, as and when. And what’s more, Arkwright’s going to talk to Harry himself. Oh to be the proverbial fly on the wall!
It was something of a dampener finding my mother in full war-cry when I got home from that meeting. I swear I smelt the tension the minute I opened the door.
Mother thinks decorating our house for the festive season is an affectation – especially the use of natural things like cones and fir that maliciously shed their component parts and leave a legacy to be found months later. Decorations – if you must have them – are for children, in her book, and should be one hundred per cent synthetic. She restricts herself to a solitary string of cards across one wall of her living room. That’s the sum total of her extravagance. And the sum total of her friends.
So the big binge-clean yesterday and today has been a poultice on a fermenting carbuncle. Today was eruption day. In a curious way I’m grateful. It’s a relief to know that she can still allow herself to be annoyed with me.
I sneaked into my study initially but my conscience eventually drove me out to join her in a coffee. It’s our mess, not hers. After a few false starts I told her I was leaving work. She was slicing off the unused pieces of A4 white paper from my scrap tray when I said this and her scissors cut the paper – and the silence – viciously.
‘Oh dear,’ she said, not looking at me.
‘I want to conserve my energy to finish off other things while I still can.’
‘What kind of… things?’ She seemed to be holding her breath.
‘My novel.’
‘Oh.’
‘It makes sense to take the pressure off.’
‘And when you’ve finished that book, what then?’
Ahhah. I see where she’s going!
‘Get it published. I hope. Make decisions – about the cover; about the blurb; about the marketing. Maybe even sign a few first editions. Who knows?’
She was gathering the scrap paper together, hitting the table with the edges as she sought in vain to tidy an ill-assorted bundle of hacked ends. This predilection for saving paper drives me insane but it suits her notion of economy and I hesitate to take away such an insignificant source of satisfaction.
‘So you aren’t still thinking of taking the law into your own hands then?’ The words came out like hailstones.
Okay, I know she’s angry with my father for dying, angry with his manner of dying anyway, and I do try to let that knowledge soften my own irritation with her but…
‘Not at the moment. No.’
‘You’ve got to think of Joel too. He looks up to you. He needs you to set a good example.’ A new tack.
‘I doubt it actually. He’s all grown up now, got his own ideas.’
‘Well, you boys always did gang up together.’ I’m not sure what she means but I have to divert the incoming tide.
‘I will say this, Mum: you should be proud of him. He
was fantastic over Christmas, and a real help to Naomi.’
I made my excuses and hid in the study again, earphones blasting Debussy’s best to shut out the concerto of angry steel and maternal frustration outside.
7 JANUARY—Curtis rang this morning after surgery and asked if he could pop in once he’d done his house calls; he had a book he’d value my opinion on.
He seemed in no hurry, lolling back in the chair, turning his enquiries as to my health into an exchange between friends rather than a medical inquisition. And as ever he listened intently to the answers. It crossed my mind that maybe he was needing to concentrate harder to understand what I was saying but not once did he ask me to repeat myself. I could almost see him going down his little checklist to reassure himself they were doing everything they could. Maybe assessing my mental state too. Who knows? He’s more aware of my internal struggle than anyone else anyway.
After an excellent discussion on the literary merits of fiction as a vehicle for conveying serious opinion, he surprised me suddenly by saying he looked forward to using my book as a text with his students. I confess I didn’t know he taught at the University – where does a busy GP find the time? But I’m flattered.
We’ve agreed a rough timetable for him to see the manuscript and give me his expert opinion.
8 JANUARY—My last few waltzes with Lydia have been rather subdued affairs. There’s something missing. I can’t forget she’s grieving, and I’m so afraid I’ll touch her wounds. Today however, she greeted me with a wide smile and a hearty, ‘Happy New Year, Mister O!’ and as soon as I was safely seated she was into expansive Jamaican mode.
‘You sure did knock them for six with that jet-propelled wheelchair.’
I grinned back at her.
‘You were there? You saw us?’
‘In the flesh, honey. In the flesh.’
‘But why didn’t you come and speak to us? I could have introduced you to my brother.’
Right to Die Page 29
