Right to Die

by Hazel McHaffie

  ‘These muscles are tied up in knots so tight even a lifelong sailor couldn’t undo them,’ she declared in her broadest accent, kneading my shoulders with fingers that missed nothing. ‘But maybe that’s on account of you being angry with me for some reason. Maybe you’re all sweetness and light with the little lady in the privacy of your own home.’

  ‘I’m not angry with you, Lydia; really I’m not.’

  ‘Aaahh. Well, then, if the blame’s not laid at my door, we need to get you relaxing mighty quick. Afore you scrunch yourself up into reeeeeeeeeeal trouble.’

  I felt the vibration of elephants crossing the room through the examination couch. Next moment, a click and a whir of a CD player, and deep rolling sounds fill the space between her calm and my tension. More thudding steps. Her fingers search and knead. Not until she’s successfully uncoiled my various muscles does she speak again. This time she’s on a chair beside the couch, her shrewd black eyes level with my wary ones. The Jamaican has left the room; in her stead is the archetypal British professional.

  Friend to friend she explores how things are at home, just what I struggle with, how much of my personal care is still within my capabilities, what I’d consider relinquishing.

  ‘What about someone coming in occasionally?’

  ‘I’d rather have Naomi helping – if I need help.’

  ‘And is that okay with her?’

  ‘I should think so. I haven’t asked. But… stands to reason she wouldn’t want strangers pawing me before we need it.’

  ‘Just so long as she doesn’t overdo it, too.’

  I’m instantly super-alert.

  ‘D’you mean…?’

  ‘It’ll get harder. You both need to conserve your energy. We need to make sure we don’t wear her out too soon.’

  Suspicion evolves into full-blown certainty.

  ‘Does it harm a pregnancy? Lifting, I mean.’

  ‘Ahh. Now that’s a different kettle of fish. I didn’t know she was pregnant.’

  ‘But I thought… isn’t that what you’re talking about?’

  She leaned back in her seat and looked at me quizzically.

  ‘I think we need to rewind here. Is she pregnant or is she not?’

  ‘Well, not as far as I know. But she might be. Maybe you know more than me.’

  ‘No, sir! Not on this point. I know nothing.’

  ‘Well, I seem to remember you taking an uncommon interest in my love life in the past. I just wondered if maybe you had special radar, or inside information, or something.’

  ‘Not me. But, is that something you’re hoping for?’ Her gentle tone took the impertinence out of her question.

  ‘If it happens. It’s something she wants – we both want.’

  ‘In that case, you and I need to make doubly sure she doesn’t exhaust herself.’

  ‘And just what magical potion are you going to give me this time?’ I teased, feeling suddenly vulnerable.

  ‘Meaning?’

  ‘It was you who tipped us into bed together at all hours to make sure I got enough rest way back when.’

  ‘Ahhhh that! The time you accused me of professional misconduct, huh?’

  ‘The very same.’

  ‘Weeeell. Let’s see. We’re looking for something that gives you maximum flexibility, with minimum effort lifting and moving. Seems to me you’ve got a couple of options. More equipment. Or a bit of outside help just to ease things a wee bittee for your good lady.’

  I’m only half attending.

  ‘If Naomi was – pregnant, I mean – would it be harmful? Her helping me. I don’t want to put her at risk.’

  ‘She’d need to be careful. Joints and things soften up with pregnancy. It’s easier to do damage. But we could give her some special training. Minimise the risk.’

  ‘Maybe I ought to think about professional help, then. In a little while. When I really can’t manage myself.’

  ‘Think about it. We can put things in motion fairly quickly. When you’re ready.’

  My thoughts are racing.

  ‘In the meantime, just to ease the pressure on her, how about using a zimmer in the house? You could lean on that rather than her to get from the bedroom to the shower. It’ll keep you independent longer.’

  Suddenly it becomes a means to a greater good. I have to protect my wife, my child.

  She is looking at me with a sad look in her eyes. Too late I remember her widowhood.

  ‘Lydia, forgive me. I’m an insensitive brute.’

  She’s clearly bewildered.

  ‘All this talk of… so soon after your loss. I’m terribly sorry.’

  ‘No need for apology.’

  ‘I should have been more careful.’

  ‘Please don’t. To be honest it does me good to think about other people’s problems. It’ll spoil things if I think you’re watching everything you say. Besides if you’re on your best behaviour, I’ll have to be. And then where would we be?’

  ‘Fair enough. But just don’t let me overstep the mark. You’re a tonic for me. I don’t want to be a thorn in your flesh.’

  ‘You won’t be. And just you remember, man,’ – the Caribbean drums are rolling again – ‘you and me, we’re in this for the long haul. Together. A race for three legs, yeah? And we’re in it to win it!’

  I leave her magical presence with a spring in my shuffle.

  Back at home, my mind is replaying our conversation. I’m suspicious that they’re all watching me – Lydia, Curtis, Devlin, Ursula – anticipating the next stage. Lydia, bless her, has managed somehow to reconstruct the unacceptable and change it into the desirable. Naomi and our baby take precedence over my pride.

  Not easy. I shudder to think of myself naked on a bath stool with two strange women in attendance lowering me, lifting me, washing me, drying me. With Naomi I can turn the necessity into a flirtatious choice, with my words if not my actions. There’s nothing unseemly in her seeing and handling my body.

  But… how will she feel when the disease distorts everything? How will she cope when she’s pregnant or has a young baby? When I am no longer her top priority.

  Naomi shuddered. Privacy. Fatherhood. Conspiracies. On-going anxieties; hidden fears. He’d even joked about them.

  ‘Lydia was telling me about a couple of MND patients who were dispatched to a home or a hospital because the relatives were so house-proud they couldn’t deal with the sheer untidiness of it all. At least you aren’t the type to sling me out because I don’t match the furniture.’

  ‘Are you by any chance casting nasturtiums on my aesthetic standards?’ she’d retorted indignantly. ‘I’ll have you know, I’ve got the colour charts in already. I thought a deep ochre for the wheelchair to co-ordinate with that mustard and sage rug your mother gave you.’

  ‘Horrors! At least choose a colour I like!’

  But that had been much further down the line. Back then, when he had first given in and used a zimmer in the house, she’d have been as opposed to outside assistance as Adam had been. Caring for him was part of loving. Resentful thoughts came much later. She’d clung stubbornly to her role, filling the gaps left by the various professionals.

  Adam had wanted her to be more aggressive in pursuing her right to respite, he didn’t want her to kill herself caring for him; it was she who had resisted.

  He’d played his trump card – pregnancy. She made the right noises, adding layers of deception to her existing guilt. She knew he had no need to protect her on that score, but it would only serve to weaken his will to live if she took away that hope.

  29 NOVEMBER—Lydia has stirred up all sorts of slurry. I feel like a bottle of Shiraz clouded with sediment.

  My time has to be limited. And Naomi still doesn’t seem to be pregnant. It’s more than likely my fault. If this muscle-rotting disease is demolishing so much of my body, chances are it’s doing things to my sperm production too. Much as I hate the idea, I think I ought to go and get that checked out. Thing is, do I tell Naom
i? Last thing she needs is pressure in that quarter; if I do seem to be in full working order that suggests she might not be, and she doesn’t need that.

  Maybe a chat with Curtis is called for.

  Naomi closed the file sharply, shut down the computer and pushed the chair back with a jerk. Noelani opened her eyes reproachfully from her cocoon of cushions but made no effort to move. Naomi picked the warm cat up without a word and left the study, making no effort to sympathise with her indignation.

  30 NOVEMBER—Nothing in the manual about fertility. ‘Personal details’ sprang out at me, but they didn’t mean that personal. So much for their claim that all the information is there when you need it.

  The ‘personal details’ section conjures up images I’d rather not visit. It suggests writing out demographic facts so that those deputed to look after us don’t have to ask umpteen questions and drain our dwindling reserves by telling our story over and over. Name, address, relatives… Wow! Surely anybody invading the privacy of my home ought to know the essentials about me.

  Apparently you’re just supposed to hand this form to each person with whom you come into contact. Conserve your energy, they say. Relieve yourself of the strain of speaking when it’s a struggle, they say. Relieve them of the strain of trying to understand me, I think! Ahhh. I concede that strangers in uniforms in A&E departments or hospital ward won’t know I own a house in Edinburgh and have a beautiful wife. Or what stage I’m at with my MND.

  This folder is not good for my health. I see myself slumped in a wheelchair, slavering, grunting, while pitying eyes skim my history. If I can’t communicate, what am I?

  2 DECEMBER—Naomi’s birthday. Not my finest hour. But it has brought me face to face with new questions which require an answer. Smartish.

  After a night of cramps followed by a frustrating day, I was like a tortoise in fog by the evening. Showering and dressing took forever and I was forced to accept Naomi’s help – sadly, with a bad grace, birthday or no birthday. I had no surplus energy to create a façade of gratitude. Every fibre implored, ‘Stay at home. You’ve gone beyond your limit’, but I’d said we were going; go we would. Genetic predisposition.

  I’d booked a table in a new restaurant in George Street – over the phone. We were only forty-five minutes late; they were empty enough not to care. First impressions were encouraging. Good ambience, excellent menu. The tension started to ease. Good tangy paté. Venison cooked to perfection. Vegetables nicely al dente. Bonus points accumulating; irritation receding. A full-bodied smooth Australian red hit the spot. Crème brûlée. One of my favourites. Last time I had it, a sharp crack with my spoon fragmented the caramel perfectly. Try that manoeuvre with weak wrists and it’s another game altogether. Naomi made a joke of it and did a subtle swap with her rum gateau, soft and altogether more manageable. I didn’t ask for rum gateau. I didn’t want rum gateau. I don’t even like rum gateau. I wanted crème brûlée.

  My real mistake came after coffee. ‘Exhibition by local artist’ the sign said, an arrow pointing to the back of the restaurant. By the time I’d negotiated the narrow spaces between tables and arrived at the second arrow: ‘To the basement’, there was no way I was going back without seeing those paintings. But when your two feet aren’t connected to your ankle bones and your brain has severed connections with your locomotor system, a steep flight of stairs represents potential disaster. Somehow Naomi managed to prevent my tumbling headlong into oblivion on the way down. Relief all round! Then... spring loaded doors, highly polished floorboards, absurdly narrow doorways completed the conspiracy. I emerged from that badly-lit display of something vaguely approximating to art with black gremlins on both shoulders, not to mention an impossible flight of stairs between me and escape.

  It was entirely my fault. I chose to go. No one made me. But all my anger was directed at the management who had compounded their architectural iniquities by hiring staff with all the sensitivity of a herd of hippopotami (or whatever the collective noun is for those artiodactyl mammals). No less than three of them grabbed various bits of my anatomy (legitimate bits, I hasten to add) and issued loud and patronising instructions on where to place my feet, how to haul myself up on the handrail, who to lean on next. I can see why they weren’t busy. They won’t be getting my custom again either, that’s for sure.

  Naomi was very quiet on the way home. I know she deserved an apology; I couldn’t dredge it up. Every nerve was too raw for self-flagellation. Threaded through the whole scenario was the unspoken but pervasive realisation: this will almost certainly be her last birthday with me. If I could go back and do it again, I would. I can’t.

  His struggle had completely distorted the picture. It had been tricky negotiating those stairs but nothing of his anger had been directed at her.

  Naomi smiled ruefully, remembering the liquid vitriol he’d released against those waiters as soon as they were safely out of earshot. His criticisms were entirely justified; they’d treated this clever, articulate man like a moron. The words he used to describe their insensitivity were probably completely outside their lexicons. In the midst of her own anguish on his behalf, she’d known a sense of awe at the richness of his vocabulary, his similes, his descriptions.

  Sadness engulfed her. What must it do to an intellect like his, to be so much at the mercy of misconstruction and condescension? To tick each special event off as the last of its kind? The only wonder was that he had found the courage to take her out at all.

  5 DECEMBER—I don’t know if it’s connected with three days of intensive writing but tonight I couldn’t even get out of my chair. Admittedly I’d been in one position for several hours and got very cold. Maybe something of Aidan’s incapacity is creeping into my subconscious. Whatever the cause, I had to call Naomi to help haul me up. As soon as I saw how much I was pulling on her, I made her get my zimmer and transferred my weight to that the minute I was semi-upright, but she took the strain. Lydia’s advice is writ large across my vision: I’ve got to protect her. The time has long since passed when I should have given in and seen the specialist nurse Curtis has up his sleeve. Having said that, I’m impressed by Naomi’s technique. She bends and stands just like Lydia does when she’s putting me through my paces. Perversely I resent her professionalism. She’s my wife! I don’t want her to handle me like a patient. I want to be the one to carry her to bed; I want her to melt into my arms. I know I should be grateful that she’s performing her role so expertly, never making me feel insecure; I’m not. I can’t tell her. I’d burst into tears.

  He hadn’t asked her how she knew the best way to move him. Lydia’s advice had been exactly right. Her understanding of Adam’s point of view, her intuition, her wisdom, had saved Naomi from many a mistake.

  ‘Resist the temptation to do things for him. It’ll take ages, it’ll exhaust him, but you’ll be helping him more by leaving him to do things for himself rather than underlining his inability.’

  ‘Help him to retain what control he has. He’s a proud man.’

  ‘When you feel impatient, think of other things to do or use the time to plan things mentally. Anything that’ll distract your own mind while he struggles.’

  Wise counsel. With so many other demands on her, Naomi had been tempted to go for efficiency; thanks to Lydia she had resisted the temptation – usually. It had been tempting to strap his head to the chair to ease the strain of holding it up. It was Lydia who gently cautioned her to let Adam decide when he would be reduced to this. He was the one who ached all over from the sheer effort of sitting.

  It had been tempting to apply for benefits for his disability early on to give him as much assistance as he needed. It was Lydia who pointed out that Adam didn’t see himself as disabled yet, and that in his perception these benefits were handouts to the underprivileged.

  7 DECEMBER—More milestones. I left a message for Curtis: I’ll see the nurse. When it’s convenient. No hurry. And I rang the MND Helpline. I need information. Something I don’t want to ask o
f those I know personally, nor risk leaking out to Naomi. Impersonal is best at this stage. It’s about the fertility thing.

  After all the effort of summoning up the courage, overcoming all my reservations and prejudices, articulating the issue clearly, even if slowly, I got this woolly woman who said, ‘What a good question. I’m afraid I don’t know the answer.’

  Back to square one.

  No, not even that; a point below square one.

  Of course, Mrs Woolly Woman offered to find out, ring me back, but I can’t take a chance on that. What if Naomi answered? We always said we’d take a relaxed approach to conception; if it happens, it happens. There’s nothing to be gained by her becoming preoccupied with getting pregnant. Guaranteed to reduce her fertility. And to put a strain on our sex life.

  Naomi gritted her teeth and moved swiftly on.

  8 DECEMBER—Mr Last-minute-dash has come to this; Christmas shopping finished two weeks early. (Of course, Naomi does the bulk of it, so it’s no great achievement.) This year it was a case of, if you can’t obtain it over the ether, it’s off the list. And if they send it direct, so much the better – to hang with battles over ribbons and tags or worse still, sticky tape.

  Totting up the price of things for the credit card has brought my thoughts unwillingly round to our financial state – again Naomi’s province. Heavens! I owe this lass, big time! Anyway, I’m still productive for the paper and working reasonably effectively – for Arkwright, at least. Stuff Harry. He set impossible deadlines even in my heyday. But given the difference from twelve months ago, I have to face reality. My earning potential is declining. I shall at some point be eligible for incapacity benefits. Incapacity – how I hate the dull treacly sludge of it. Benefit – the very spit of its brisk emerald green syllables mocks my resistance.

  ‘The Dept of Social Security will need to be satisfied that you cannot continue to work,’ the leaflet threatens. In my case that’s difficult to establish. Physically, I can do pretty much everything that my job requires; it just takes longer. I minimise inefficiency by working from home, but the sheer exhaustion of living can easily leave neither mental space nor emotional energy for thinking outside the box.