Right to Die

by Hazel McHaffie

  The tears had come in spite of her best efforts.

  ‘We have to be practical, love,’ he’d soothed. ‘I’m going to be pretty useless about the house myself in a bit; it’ll put pressure on you. Nobody wants that less than me but I don’t have much choice here. Hopefully Curtis and Lydia and their little army will bring in enough muscle and equipment to spare you the heaviest work, but whichever way you look at it, more of the burden will fall on you. If you were pregnant, or had a baby to take care of, it’d be even worse, wouldn’t it? I mean, you can’t be humping my thirteen-stone carcass around the place in that state. Although I guess we could rig up a train system with a pram attached to a wheelchair. How’d you fancy wearing a peaked cap, blowing a whistle? But we’d need somebody else to do the opposite shifts. Nah! Wouldn’t work. Besides you’re skinny enough already – can’t have you fading away from the sheer daily grind now, can we? You’d be invisible!’

  He’d lightly moved on and the subject hadn’t been raised again for weeks. But there had been no hint of his pain. And she hadn’t delved to find it. Her own disappointment had been overwhelming. She was already thirty-five. Was he in effect closing the door on motherhood for good? Even if – and it was a big if – she did eventually move on to a new relationship, it would probably be years before she was ready to have a child with anyone.

  Maybe then she should…

  Now, remembering her rebellious thoughts, she whispered, ‘Forgive me. Forgive me.’

  1 JULY—For some inexplicable reason today, walking along the road to buy a collection of newspapers to see how the enemy reported yesterday’s fiasco in parliament, I had a sudden terrifying vision of falling and breaking both arms. The horror of relying on others for the intimacies of life was as real as if it had happened. I flopped down on the first available seat and found I was physically shaking. The picture was so vivid: strangers doing… no, it’s too gross to solidify in written prose.

  3 JULY—Devlin told me the progression of MND is very much an individual thing. They can’t exactly give you a map and tell you, you’re here, and this is what you’ll find around the next corner.

  However he did hand me one pearl of great price. When you have something like this, he said, you’ll probably assume everything that misfires is attributable to the MND. But some symptoms may well be due to run-of-the-mill ailments we all get from time to time.

  I see the logic. Best to be on guard against this tendency. No merit in dragging the point of no return forwards.

  Plato springs to mind: attention to health can be a major hindrance in life.

  Harry’s breathing fire and brimstone, so I mustn’t linger here on the therapeutic writing. From his foul mood I guess ‘them upstairs’ must be leaning on him. Sales figures showed a bit of a drop recently, I know, and everybody’s a bit twitchy after the recent bad publicity for the media – a couple of rogue reporters being economical with the truth, a ding-dong battle with a minister over implications of fraudulent activities, gossip about the deputy chief’s expense account. They say a week’s a long time in politics; I say a day’s a long time in journalism. One dodgy sentence, one infelicitous word, and you’re hung out to dry.

  22 JULY—I’m appalled to see how long it is since I scribbled this diary. But things have gone from bad to worse at work. Harry nitpicks endlessly and gives us hell for everything from late submissions to split infinitives. The atmosphere’s hardly conducive to creative flow, so I’m working more and more at home. But that has a spin off – the working day doesn’t have any end point and to stay ahead of the game (in case) I’m working half the night too.

  I know I need to keep sorting out what I think and feel about this illness but I’m so preoccupied with keeping Harry off my back (somehow I don’t seem to have the thick skin for his sarcasm I used to have) that all my energy is going on staying focused on the current topic for my column and searching for a new angle on anything that comes up this week. Hmmm. Somewhere under the surface I’ve acknowledged that I can’t afford to thumb my nose at the awkward squad. If I lose my position with this paper, who else would take me on?

  Maybe this absorption with work is a good thing. Perhaps it means I’m getting some perspective on my situation. I’m knackered at the end of the day, that’s for sure, and I’m more unconscious than asleep at night, so I don’t lie awake obsessing about the future. Lydia would do her huge ebony nut if she knew how exhausted I’m getting keeping up this punishing pace, but I’ve had to miss my last two appointments with her so she hasn’t had the chance to castigate me.

  Naomi let her mind roam back to that summer. Adam’s output had been prodigious. He’d seemed so much less stressed working at home, so much more jubilantly productive. And she’d capitalised on his availability, soon coming to rely on him to get the washing in when it rained, to take delivery of parcels, to put a casserole in the oven, to take Cassandra to the vet. The merging of their roles seemed to bind them closer.

  There had been no hint of anxiety about future earning potential.

  She let out a long sigh. Why had he clung so stubbornly to his self-appointed role as protector and provider? Was it her fault? Had he seen her as too weak to stand alongside him in this ferocious battle?

  What if this was all to come in his diary? Could she bear his disappointment as well as the dragging senselessness of every day without him? Now, when it was too late to change anything. Not tonight anyway. Not without Stella around to give her therapeutic counselling.

  She hammered down on the sleep button and dragged herself to bed. There was to be no respite from the surging thoughts, and she awoke bathed in sweat after a recurrence of the nightmare. The sound of her mother-in-law’s accusations refused to be obliterated and she eventually slunk downstairs to the kitchen. She smiled ruefully. How do you explain chopping vegetables for a hotpot at 4 in the morning?

  But there was no one waiting for an explanation. The emptiness of the house reproached her in its silence.

  The hours ground by on leaden feet until she could dial the number.

  ‘Stella Lucas speaking.’

  Naomi let out her breath slowly.

  ‘I’m a condemned woman all over again.’

  31 JULY—I told Harry today. My conscience (I blame my mother!) forced me to in the end. I couldn’t keep missing appointments with Lydia, not when Curtis has gone out of his way to get help from the beginning. I told him I needed to take time out occasionally but I’d make up for it in the evenings and my output wouldn’t suffer. He stared at me in that superior way he has.

  ‘Just make sure it doesn’t. There’s no room in this outfit for slackers,’ was all he said.

  ‘I’d be grateful if you’d keep this to yourself meantime.’

  I’ve no idea if he will or not but I’d nothing to lose by asking.

  3 AUGUST—The more Naomi tries – oh so subtly! – to do things ‘to spare me’, the more I rebel. I know her intentions are exemplary but…

  Well, I have this stubborn streak inherited from my maternal progenitors: you tell me I can’t; I’ll prove to you I can. That particular trait drove my poor old mum to distraction. They say that parents dislike most in their children those characteristics they possess themselves. After more than one titanic confrontation my mother ground out, ‘What you need, young man, is a sound thrashing!’ Spare the rod and spoil the child, she maintained, and society would be a better place if it took a bit more heed of Scripture and a bit less notice of the reformers and namby-pamby sociologists.

  But there was another very potent reason why she could never bring herself to administer that physical corrective.

  I was only a kid at the time but I swear I smelled the ‘mood’ the second the back door opened each evening. Neither of us ever mentioned it but, looking back, I think my mum did too. It might have been something about the heaviness of the footsteps. Or the time my father took to hang up his coat. Or the speed of his approach. I never analysed it, I just experienced it. But I can r
emember watching her with fearful eyes and noticing the clench of her hands or her retreat behind a chair.

  Eventually he was forced to get treatment. His manager just wouldn’t accept his ‘attitude’. But no work meant no money coming in. There could be no sick-line without a doctor’s appointment. He was a proud man as well as a stubborn one (I get it from both sides); he held out until he was sectioned.

  Severe depression was what my mum called it. At least, doped up, my father was more docile but it crushed his spirit and I don’t believe he ever recovered from what he saw as the stigma. Mum never really recovered from what she saw as the shame of his suicide two years later. Unless you’ve been dragged through this particular mire, it’s probably impossible to comprehend the complexity of emotion that hangs about, not daring to name itself.

  I know there’s unfinished business there still for me too. But hey, this is no time to go unpacking baggage from my schooldays. I only mention it here because this week I’ve had a sneak preview of what it feels like to stand on the edge of that particular murky swamp with no visible stepping stones. From the slurping tongue at the edge to the deep black treachery of the middle, it’s just waiting to suck you under. My rational self tells me it’s legitimate to feel low; my emotional self berates me for giving the devil a foothold.

  Devlin said depression was common; but back then I assigned that particular bogey to other people. It wasn’t in my lexicon.

  Now I’m torn. Whose genes win out here?

  Moving swiftly on…

  Later An absolute belter of an evening writing about our local MP’s latest gaffe in the House has restored me to my customary (??) ebullient mood. His classic spoonerisms just shriek out for caricature. This time even his own party cronies guffawed at his expense.

  4 AUGUST—I could see Harry was impressed by the speed of production of this piece (not that he’d ever actually express any positive emotion). Since I told him about the MND I’ve had a distinct feeling he’s been watching for slippage. In a perverse kind of way, knowing he’s on the lookout for weakness makes me all the more determined to show my productivity is up there with the best of them. Hence the crazy hours, the personal, completely unrealistic deadlines.

  I may (possibly) be fooling Harry but sadly, I can’t (definitely) disguise the problem from myself. I tried. Hadn’t Devlin warned me about attributing every symptom to the disease? It was just normal tiredness from my punishing lifestyle. But that little fantasy is pretty frayed and threadbare now. The strength is definitely going in my legs. Although Lydia hasn’t spelled it out, I’m pretty sure I detect an adjustment in the way she badgers me into easing off. I’m finding ways to compensate but my mind is rebelling like crazy over this.

  And although I keep telling myself it’s frustration not depression niggling away at my temper, I honestly can’t tell where one ends and the other begins.

  So. This thing is already clamping down on my lower limbs. Next it will be my hands (for real this time). Wall-to-wall Velcro and elasticated waists, here we come! They’ll need to drag me kicking and screaming into that little nightmare.

  Can I bear it?

  Hands are so essential to independence. I don’t know if I’m making things worse with all this keyboard stuff but it’s my life-line, my salvation, so there’s no way I’m even asking the question.

  How much am I prepared to tolerate? How much am I prepared to compromise?

  Looking at her own hand unthinkingly stroking the ball of fur on her lap, Naomi saw instead Adam’s fingers splayed against the arm of his wheelchair, stiff, unresponsive… the clenched jaw… the despair in his eyes.

  A groan escaped her. She was the one who’d denied him his way out. If the positions had been reversed would she have wanted to linger through a nightmare?

  If only… If only…

  She got up so suddenly from his chair that Noelani, finding herself without a foothold, yowled in protest and stalked frostily from the room, her tail signalling her disapproval. Adam would have been gentler, she seemed to say. He knew how to treat a lady.

  Indeed. Comparisons flooded unbidden into her mind. He had accepted her flashes of irritation with equanimity, never retaliating. He’d teased her sulks away. He’d given her a sanitised view of his suffering. He’d kept so much from her, until it was too late for her to share his pain. He’d denied himself to give her a future.

  Blindly, she lurched into the kitchen. The clock indicated that it was time to eat; the bitterness in her mouth denied her appetite. Instead she went upstairs and lay on the bed, her face buried in the plain black jumper that still held his scent; her heart, her eyes, too leaden for tears.

  13 AUGUST—Cassandra caused a sensation today, bless her. Somehow she crawled inside the tumble-drier and must have nestled in amongst the damp towels awaiting their evening spin. The first we knew of it was when Naomi flicked the switch as she went by, glancing idly at the load beginning its revolution.

  I was in the conservatory when I heard her shriek and by the time I got to the utility room she’d switched off the power and was just staring at this splayed blackness across the porthole as the drum gradually slowed to a halt. As soon as I released the door one very bedraggled bundle of spiked fur bolted out into the garden. I eventually found her cringing under the shed. She spat and snarled at both of us to start with but gradually I coaxed her out and, once she’d deigned to forgive us, she sat on my lap being stroked for the rest of the evening, although I swear she didn’t stop quivering for at least two hours.

  Why do I recount this here? Because at the end of the day I realised that being preoccupied with her fear and relaxing her, I’d unwound myself for the first time in weeks. I was getting on with some reading at the same time, but it was therapeutic just having her close, stroking her rhythmically. I’ve heard about pets being taken in to nursing homes but hadn’t really made an association for myself. Cassandra could indeed become a help to me.

  We chose the name Cassandra because it means helper of men. She’d begun her time with us as Moggy. I was never a great animal lover and our way of life just isn’t pet-friendly. But fresh from a brutal encounter with an articulated lorry down at the crossroads, the scrawny creature that fawned against us five years ago couldn’t even help herself never mind mankind.

  I staunchly resisted Naomi’s appeals to take her in at first; we would nurse her back to health and feed her up, yes, anything less would be inhumane; but then she’d have to go. I’d bargained without those wide, yellow eyes, that sinewy body snaking silently around my legs, her erect tail stroking my skin in silent appeal. I’d growled at the persistent lurker that if she dared to insinuate herself more permanently she’d have to earn her keep and make sure there were no furry invaders coming into the house from the field on the other side of our fence. Our little arrangement got off to a dodgy start during which she demonstrated her growing affection with half-dead offerings laid at the altar of our bed; but the strategic use of inducements and barriers gradually persuaded her to adapt to the mysterious standards of homo sapiens and we formed a workable pact. Today she repaid her debt to us.

  18 AUGUST—Glorious, wonderful, liberating freedom. Two whole weeks away from Harry! I’m buzzing with anticipation. There are cases to pack, books to select, last-minute emails to send, the garden to leave in a state for my mother to take care of in our absence – oh, a multitude of things to do, but I need to record the sheer buoyancy of my feelings.

  Tomorrow morning we fly off, hundreds of miles away from the carping poison of my line manager’s vendetta. We go with Curtis’s approval and Lydia’s blessing. I got a distinct impression that they were both thinking, Go while you have the chance; this time next year you might not be able to. Probably my paranoia. I’m determined not to let anything spoil Naomi’s break from life’s thwarted and inadequate parents and traumatised children.

  Bavaria, here we come!

  4 SEPTEMBER—Bavaria was fabulous. Wall-to-wall sunshine, loads to explore (s
o we could vary the activity levels), hotel our best choice yet, food fantastic. I fell in love with Naomi all over again.

  Makes returning to a world with Harry in it all the more unattractive. But two weeks and he’s off himself. Maybe he’ll enjoy Tibet so much he’ll lose himself somewhere in the mountains. Or be seduced by the teaching of the monks and come back a new man. I’m allowed to dream.

  5 SEPTEMBER—I’m spitting blood today. I am not going gently into this dark night. And I am not needing any do-gooders to count my cussed blessings!

  Naomi read this entry twice. What had happened to upset him? Something so big its presence was too real to need recording. Curious. This was an Adam she didn’t recognise. What else had he suppressed?

  8 SEPTEMBER—Today marks a defining moment in the trajectory of this disease. I fear I upset Naomi by rushing to my machine too soon after our meal tonight, but I have to get this down. I don’t want to tell her yet, but I’m struggling to stay focused on anything else, so she’ll soon get suspicious.

  We had an editorial meeting from 1 to 3 this afternoon. Roy Travis was banging on about wanting to cover HRH’s visit to the new marine centre and write some dotty article about the royals being up to speed on environmental issues – yeah, right! What an oleaginous creep that guy is! I was, I admit, regretting a soporific lunch with the new kid on the block, Jerry Lloyd. (Thought it might be nice to fill him in on the vagaries of the team so he didn’t commit any faux pas detrimental to his continuation in the outfit.) Merlans en piperade followed by gâteau mousse au chocolat (liberally laced with cognac) not to mention a rather fine Bordeaux might have slipped down the alimentary track unnoticed by the brain cells ten years ago, but these days anything more than an egg sandwich midday seems to turn me into a veritable narcoleptic. But I was still in touch with the general tenor of the discussion… or so I thought. Until I was jerked rather rudely out of my pleasant little reverie by The Editor himself.