Right to Die

by Hazel McHaffie

  She’s gushingly willing to come out to the house to see what they can do to ‘adapt’ things. The pages of her treasured catalogue flick assuredly to double handrails, scaffolded toilets, ramps, bath hoists, stair lifts. There’s no picture of her latest acquisition but her enthusiasm makes her poetic in her endorsement. A new motorised wheelchair – well, new to her stable. A reject from some spinal unit in reality. One instantly wonders what dire fate befell its last occupant.

  I haven’t the heart to dampen her bright eagerness. By all means come if I’m on your list, have a coffee even, as long as you get the message loud and clear: I’m not ready yet to yield ownership of my castle to a bunch of carpenters. But the proffered grant form for ‘necessary alterations’ is the tin lid. I’ve suddenly got an urgent appointment with my boss.

  I’ve become paranoid about backing up my novel. My therapy. Imagine telling my story, inch by painful inch, and then a machine failure obliterating the memory in the flick of a switch. Somebody once told me to keep copies wrapped in polythene in the freezer in case of… was it fire or gas explosion or bomb damage? Whatever.

  I’m trusting the usual computer archives, and sundry backup discs. The bigger the files the more I fear over-writing today with yesterday. The more copies I make the bigger the risk.

  As I say, I’m paranoid.

  26 SEPTEMBER—You’d have thought I’d be pleased to receive a DVD of the 2004 Paralympics. I’m not. I can’t bear to watch more than edited highlights. And since not even sports commentators will castigate a disabled loser, you can’t pretend it’s an extension of the cruel world of able-bodied competition. If I can’t compete on equal terms, I have not the least desire to enter the race. Consolation prizes are not for me.

  And I am not defined by my diagnosis nor its associated deficits.

  29 SEPTEMBER—I’m beginning to suspect it was Curtis or Lydia who organised the OT consultation: sound him out; we know what he needs; maybe he doesn’t.

  Am I on the verge of derailing?

  Prawns, mushroom, egg, rained onto my lap at lunch today; plopping soggily one by one to the floor. I cursed them roundly for their mutiny and slammed the denuded slices of bread I still clutched straight into the bin. Well, almost. One piece stubbornly draped itself on the edge, dripping seafood dressing the wrong side of the polythene liner.

  The washing machine took care of my clothes. But even that took another annoying chunk of time out of my working day. It’s ridiculous the way they reverse fasteners on waistbands so they’re invisible to an observer. Who cares? And why do shirt buttons have to be so small? There’s no rule says they must, is there?

  For once I prayed my mother would drop by to scrub the evil smears from the carpet I couldn’t reach. Perversely, of course, she stayed away. Noelani’s breeding prevented her from bailing me out, even with the fishy component. Maybe I need the kind of mongrel dog that hoovers up the evidence behind its humans automatically. Forensically aware. They do exist.

  Naomi substituted for my deficiency when she eventually got home. Without complaint. Or comment.

  It had been a particularly lowering moment for her too. Naomi remembered now the tight look on Adam’s face, her own feeling of irritation on top of the exhaustion of a draining day. The realisation that this was the future she had in store as long as he was alive. The fear that she would buckle under the demands.

  Her silence as she scrubbed was a mask. Her every effort had been devoted to suppressing the protest within.

  Oh, if only she could scrub carpets for him now. She’d do it gladly.

  30 SEPTEMBER—I cannot be accused of lacking in initiative even in the face of my disability.

  It’s a combination, I suspect – autumn temperatures, decreased movement, worsening circulation to the extremities – all conspiring to chill my flesh. A quick email to a sportswear company and… Abracadabra! I’m the proud owner of some warm but light ski-wear. The label says windproof, washable at forty degrees. I look poised for a jolly little slalom down the Austrian slopes. Hmmm.

  The MND leaflets advise lots of layers. Are they crazy? Do they know how long it takes to negotiate these hurdles – inwards and outwards? My only concessions to their expertise are sheepskin slippers and… would you believe it?… long johns!

  Oh, I was as resistant as any bloke of my age to begin with, but when I tried them on for Naomi I stuck out one leg and adopted a model pose and a ponsy voice: ‘These, daaaaling, are all the rage, don’t ya kneuww.’ And she, bless her, did some rather pleasant things to various parts of my anatomy. She reckons they emphasise my sexy legs. Come to think of it, Lydia always had a thing about my legs in her married days, too. And I must admit these all-encompassing underpants nicely absorb the heat from the towel rail so I start the day cosy. Bring on the check slippers and cloth cap!

  Sexy legs or not, I look like an eccentric explorer in my own home.

  1 OCTOBER—Ursula Major re-appeared today. Full marks for persistence; no marks for radar. A ring at lunch time; on my doorstep at 2.15.

  I was remarkably patient, I thought, listening to her spiel about finding alternative ways of doing everyday tasks, conserving energy, the range of equipment available. Yawn, yawn. And to her credit, she did try to soften the edges. She can’t be expected to read my distorted thought processes.

  ‘Just give it a try – if you don’t like it, or it doesn’t suit you, we can return it.’ Aye, right. In my book better not to order in the first place than go through all the delays and arguments of returning unwanted goods. I can see my hallway stacked high with the detritus of disability.

  ‘You can just have these things on loan. Better than going to the unnecessary expense of buying equipment like this.’ For such a limited amount of use, you mean. No point in Naomi inheriting zimmers and wheelchairs and high-back chairs with head restraints.

  ‘Don’t dismiss getting a grant. Adjusting your home is a question of safety as well as independence. No point in being more disabled than you need to be, eh?’ She can laugh; I can’t.

  ‘Don’t look a gift horse in the mouth. Lots of people get equipment too late to be of any use.’ And this is supposed to be a comfort?

  I am not hoodwinked by this bribery and corruption for a second. And I resent this intrusion. I accept I need assistance. Devlin, Curtis, Lydia – okay they’re emphatically on my team. Fellow travellers. But… chiropodists, OTs? Where will it all end? How many gaolers will be blocking my escape route?

  Ursula Major is a straw too far. Her parting shot shows just how little she has understood me. There are places called Disabled Living Centres, she trumpets. They display and demonstrate equipment. My hostility seems to prickle through my ski-suit but the petite blonde burbles on oblivious to my reactions.

  ‘Her name’s Theresa – a lovely lady – about your age, too. She’ll demonstrate things for you.’

  ‘Look, I don’t want to be rude,’ I lie, ‘but I have deadlines to meet for my job and a boss who’s a cross between a Rottweiler and a dragon. So thanks, but no thanks. Not at the moment anyway.’ I’m impressed myself by the authenticity of my hypocrisy.

  She boomerangs back without missing a beat.

  ‘Oh well, if time is an issue I can give you the name of a mail order firm and they can send you a catalogue. I expect you know how to use the Internet, yes?’

  I stare at her bleakly, and nod. She rummages in her papers and gives me another leaflet. Somehow I manage to inch her to the door. I have no energy left to tackle Harry’s demands.

  2 OCTOBER Lydia to the rescue!

  ‘Help!’ I squealed when I shuffled into her room at the surgery. ‘Save me! Rescue me! I’m teetering on the edge of committing a major crime.’

  ‘You got a problem, Mister O?’ The rhythms of the Caribbean were music to my ears.

  ‘Sure have, Lydia. But I think you may be in a prime position to bale me out.’

  ‘I’m listening. Just you take your time now, man. What’s been happening to
make you all a-fluster like this, now?’

  ‘I’m in mortal danger of being equipmentalised to insanity.’

  Not unnaturally she needed explanation. I did my best not to ridicule or denigrate her diminutive colleague, but I piled on the horrors of those infernal catalogues.

  ‘And just what do you want from me, honey?’

  ‘I need you to give me every tip in the book, every plan that’s ever worked, anything – anything to keep me from sliding down the slope to rented stair lifts.’

  I felt the rumble of laughter before it reached my ears.

  For twenty minutes she sat beside me probing my deficiencies, suggesting solutions. Non-essentials were wrenched out of my days. Activities were prioritised on a continuum from strenuous to gentle; and then casually distributed in a beautifully balanced scatter across the twenty-four hours. Occasional hiccups of rest were slotted in as comfortably as cups of coffee. My study, the bathroom, the whole house, were suddenly rearranged, bringing important things close to hand, removing unseen booby traps. Labour-saving gadgets were dragged out of cupboards.

  ‘Stick to the old principle, Mister O: Never stand when you can sit, never sit when you can lie…’

  ‘…and never lie when you can tell the truth!’ I finished for her.

  ‘We can do it, honey. We can do it!’ she exclaimed triumphantly, punching the air in salute.

  ‘With you everything is possible, Lydia. I owe you, big time. Bless you.’

  ‘Just you keep smiling, Mister O!’

  Balm to my tortured soul.

  Naomi thought for the hundredth time that Lydia should have inherited something from Adam’s estate.

  It was only after his death that she’d discovered he’d wanted to do exactly that, but Lydia had told him in no uncertain terms that to do so would, for her, spoil the pleasure of working with him. She wanted no remuneration except his enjoyment of her company and his appreciation of the limited help she could provide on his difficult journey.

  The debt was, in reality, beyond monetary value.

  4 OCTOBER—I’m sitting here late at night, ostensibly dealing with emails. Maintaining the illusion of a demanding professional life. I alone am awake in this crazy world.

  Joel’s up again this weekend. Joel. My little brother. Who can tramp in the Pentlands with Naomi, leap up and help her clear the table, look suave in designer labels. Who makes Naomi laugh again.

  I have an illogical urge to bind her closer to me by means of a baby. It’s not for want of trying – on my part at least! She doesn’t talk about it now. I don’t either. I daren’t risk any suggestion of failure. And tonight the prospect seems further away than it’s ever been.

  Mother joined us for dinner this evening. After she’d gone, Joel, with his characteristic openness, shot out: ‘What’s she making of all this business, Adam?’

  ‘You really want to know? It’s not a pretty sight.’

  ‘Bible bashing again?’

  ‘From the sanctity-of-life soap box.’

  ‘Ahhhh. Dad’s legacy, huh?’

  ‘Partly, yes. But… She means well. My eternal welfare is crucially important to her. In a way I envy her unshakeable convictions. They’ve stood her in good stead in hard times in the past. I could do with that kind of prop myself…’

  ‘But?’ Joel interrupted with a grin.

  ‘But she’s so… unscientific, irrational. I run out of noncommittal things to say.’

  ‘Just because you can’t prove things doesn’t mean you should dismiss them, out of hand.’

  I turned in surprise. Naomi was supposed to be safely outside with Noelani.

  ‘I feel sorry for her. She’s genuinely worried you’ll do something silly,’ she said defensively.

  ‘She’s talked to you about it?’ I asked, staring at her in amazement.

  ‘Yes, of course she has. She needs somebody to be there for her, too.’

  ‘But I haven’t talked to you – about that!’

  ‘Well, maybe you should.’ Her face was impassive.

  ‘Time for a sharp exit, methinks,’ Joel said, scrambling up from the floor. ‘Night all.’

  Heavy silence pervaded the room. She curled herself on the floor on the other side of the hearth, her face turned towards the fire, her expression hidden from me.

  ‘I was only trying to protect you, Naomi.’

  ‘Maybe. But you can’t. I’m living with this too, you know.’

  ‘But you don’t need to take on the burden of my uncertainties, too.’

  ‘It’s worse not knowing what you’re thinking. Hearing it from your mother doesn’t help. I know how you say things you don’t necessarily mean to her.’

  Silence.

  ‘Are you going to do it?’ There was a hollow echo below her tiptoeing words.

  ‘I don’t know. I’m thinking about it. It depends.’

  ‘And were you going to tell me?’

  ‘I honestly don’t know. But I’m definitely not going to implicate you if I do go down that road. I told Curtis that.’

  ‘So he knows?’

  ‘Only that I’m questioning the best way forward and that’s one of the options – for the future. Not yet.’

  ‘And does he agree?’

  ‘It’s difficult to tell. He’s sympathetic but basically on the side of treating symptoms, making life worthwhile.’

  ‘But you don’t think it’s worth going on.’ It was a flat statement. The distance of oceans lay between us.

  ‘At the moment it is. But I don’t know about later. Damn it, Naomi, what d’you think it feels like watching everything I care about slipping out of reach?’ I broke off abruptly.

  ‘Probably as lousy as watching the person you love falling apart in front of your eyes,’ she began, but got no further. I saw the fire sparkling on her tears. Still she made no move towards me.

  ‘Would it be so wrong, Naomi? Do you agree with my mother?’

  ‘I understand where she’s coming from. I don’t want you… to…’

  Another eternal pause. In the end I broke into it.

  ‘It’s not a cut and dried issue, is it? I mean, okay, life is special. You don’t have to be a religious nut to think that; I think it is too.’

  She didn’t speak.

  ‘But – well, there are grey areas. I’d have thought you’d understand that. You see it all the time with abortions. How much are those lives worth? – in this so-called civilised society! Abortions come on demand.’

  She just sat there staring into the flames. I ploughed on.

  ‘Literally thousands of sanctified little lives ended every year. For the flimsiest of pretexts – it doesn’t fit a social calendar, it was a one-night stand – you know the excuses they give. But there it’s the mother deciding to end somebody else’s life. This is my life and I’m making a rational assessment of the quality of that life. And I’d rather have a shorter, good quality life than a protracted, poor quality one.’

  The complete lack of response was unnerving.

  ‘It’s absurd that the law doesn’t make distinctions. Surely Shipman’s more morally guilty, murdering however many patients, than Curtis would be if he helped me out of my predicament compassionately.’

  ‘And is Dr Curtis willing to help you?’

  ‘Probably not.’

  ‘Why?’

  ‘Because he thinks you’re worth going on for.’

  She half turned.

  ‘D’you have to make a joke of everything?’ Even with the tears drying on her cheeks, her look spoke volumes.

  ‘No, seriously. That’s exactly what he said. Reckons that as time goes on, I’ll still rate life better than death because of you, my writing, music, the garden. But especially you.’

  ‘But you disagree.’ She turned away again, but not before I saw the bleakness in her eyes.

  ‘No. I don’t know. Because it’s not simply about what I rate for myself. It’s what I rate as best for you. Having me leeching all the life out of you,
isn’t what I want for you.’

  ‘But shouldn’t I have a say in that? You want to decide for yourself; why can’t I decide for myself?’

  ‘Ideally you should. But I know you. Not a selfish bone in your body. I don’t want you to sacrifice yourself for me. I’m going anyway. What difference does a day make?’

  ‘You’re not thinking about a day.’

  ‘Literary licence.’

  ‘Are you going to tell me… if… when…’ Again the strangled words cut off in their prime. Suddenly silent sobs were wracking her body.

  It took an eternity to heave myself out of the chair and get to her. Ages later I answered her question.

  ‘It’ll depend on whether you can accept my decision or not.’

  This time her silence wasn’t slicing through me; not with her curled up against me, all soft and yielding.

  ‘If Curtis could promise to help me when my time’s up, I’d probably keep going longer because I’d feel secure. If he won’t give that undertaking, I might have to decide sooner while I still have the capacity to do it myself. Ironic really, isn’t it?’

  ‘Mmmhhmm.’

  Long after she’s gone to bed here I am still mulling over the things I said. Actually that bit about it not just being about me is taking my thoughts down a new route. Makes me realise that autonomy is relative; depends on the unit you’re talking about. Should it be us as individuals, us as a couple, us as part of a larger family unit? Help! My mother is squeezing through the gap!

  Vivid memories of that evening were etched into her brain. His version told her more. But what could she have said? Even now, with all the benefit of the lived experience, she had no easy solutions. If he had only known the double-edged sharpness of the knife he drove into her heart that night… Yes, she had shared the burden. Out of his sight.

  8 OCTOBER—Scunners! Joel must wonder what on earth’s going on; driving all this way for a weekend and sandwiched between two sphinxes. What did he think, leaving this time? Would he ever see me again? I must ring him.

  I was lucky. Somebody had cancelled the last appointment with Curtis – well, maybe. Whatever, the receptionist said she could slot me in. Better, this time, on his turf. Better still, no one waiting in the waiting room.