Right to Die

by Hazel McHaffie

  Lydia thinks splints might help. If my ankles are supported, my feet won’t drop and I shan’t be so likely to fall over them.

  Of course, being Lydia she wrapped it all up in her mock Caribbean drawl and her exaggerated gestures, and managed to conjure up this graphic picture of a new, turbo-assisted me, powering along in the fast lane again. But I confess I was struggling to see the humour this time around.

  Splints represent the triangular wedge that prises open the gates of hell. My very first real aid to normal living. It’s symbolic. Therefore to be resisted.

  I stalled.

  Lydia dropped to her gentle tones, ‘Just give it some thought, honey.’

  I thought all right.

  ‘Get thee behind me, Satan,’ I roared in the privacy of the bedroom standing looking at my reflected ankles, thinking.

  Speaking to my stalker, my Nemesis, is a tactic I’ve adopted recently. Telling it just what I think and how I absolutely refuse to let it get a grip on the essential me, is part of this resolve to remain in control. It gives me a punch-bag.

  I must talk to Naomi about her limits.

  Naomi frowned. She had no recollection of such a conversation.

  11 MAY—Naomi has taped down the edges of all our rugs. No discussion. No explanation. It’s a fait accompli. My feelings have shocked me to the core.

  A few weeks ago I really believed we were rock solid. Nothing could shake our closeness. Knowing we were destined soon to part for ever would keep me from hasty words or petty annoyance.

  Today I feel a powerful urge to lash out, retaliate in some way.

  How could she join in the conspiracy?

  The very fact that she did it while I was out highlights the underhand nature of the crime. Treating me like a child. For my own protection, no doubt. Not wanting to upset me. Assuming control. Not asking for my opinion. Like a mother.

  SHE IS NOT MY MOTHER.

  I need time with this.

  Wow!

  12 MAY—Seeking some perspective on this seething resentment, I tried to concentrate on bigger issues last night. In some twisted way it was easier to think about it feeling mad with Naomi. Maybe she won’t be as distraught to be rid of a drag of a dependent husband as she might have been to lose a beloved equal partner.

  A way out. Is this what I want?

  I have quite a collection of snippets from the papers now on euthanasia. The Dutch scene. The Swiss situation. Oregon’s. Australia’s skirmish with it.

  My thoughts are muddled. Depends on my mood. Today I just need to let my mind dot around in all of this.

  First then, Dignitas. The death-deliverers. They’re filling a void for some people. But what a hassle flying over to Switzerland to die. I’d need to go alone while I still could; I couldn’t ask Naomi to deal with that cheapskate death room, or the solo return flight, or getting my body back.

  I was shocked to read about the people with perfectly treatable conditions – physical as well as mental and psychological – who’ve gone down this route. I get this vivid picture of a crocodile of folk, withered and hunched and disabled, wending their way along the road to this house of death, weighed down by the burden of self-denigration, feeling worthless, a drain on resources; just wanting the doubts to be stilled. You can see why they call it a slippery slope!

  Next up, sanctity of life. I hate the very expression, because my mother always churns this one out. But in a perverse kind of way, I envy her the certainty. So much in this area is confusing and grey; a moral maze indeed. I like the idea of an absolute, immutable, fixed point of reference such as she has, something to take bearings from when the arguments are drawing you into troubled waters. But I just can’t swallow it.

  Is suffering good for the soul? The further down my own track I go, especially since this business with Naomi – the baby and the rugs – the more I think you have to consider spiritual and existential and psychological suffering, not just physical. And I don’t feel any of them are doing me good. If it’s so good why does everyone strive to avoid it?

  Actually, Curtis has given me a lot of food for thought, and as far as I’m concerned, because he’s in there with his sleeves rolled up, getting his hands dirty in life’s real messes, his opinion carries a lot of weight – certainly more than my mother’s!

  I guess it’s a completely different issue for philosophers to advocate euthanasia and propound the academic arguments to back up their opinions – they won’t be required to implement it. That’s presumably why they call it ‘philosophical killing’. So I have to take Curtis’s reservations seriously, even though he might not wow the courts with his scholarship or literary eloquence. His real-life understanding certainly counts for more in my book.

  I had a look on the Net for relevant cases and two in particular have settled in my consciousness and made me think. Both of them happened around the same time. Both were young women, forty-three years of age. Older than me but still young to die.

  One was Ms B, a quadriplegic, completely paralysed, so totally dependent – unlike me (so far). She’d had a bleed into her spinal column. Knowing there was no hope of improvement in her physical condition, she was battling to be allowed to die.

  Now, I’d have thought that was a cert. She’s refusing treatment. You’re allowed to refuse treatment. Doctors aren’t supposed to treat you against your will if you’re a mentally competent adult – as she was. But the Trust was arguing that she couldn’t decide until she’d tried rehabilitation in a specialist unit. She, however, bless her cotton socks, stuck to her guns and must have put up a pretty eloquent defence of her position because the judge, Dame Elizabeth Butler Sloss, went on public record as saying how impressed she was by Ms B’s logical and sustained wish and arguments. The newspaper report included these sketches of a group of ‘my learned friends’ gathered around the hospital bed, straining their outraged ears to hear what the woman was telling them. In my mind’s eye I see them clutching their robes around their legs to avoid the creeping MRSA, consciously trying to obliterate the steady bleep and blip and hiss and squoosh of the monitors and machines ticking towards infinity. But I reckon any judge who’s prepared to abandon the sanitised court surroundings and step firmly into the real environs of intensive care is well on the way to forming a good judgment. And this M’Lady in particular sounds like a thoroughly good egg, with compassion running through her veins alongside the legal precedents and articles and arguments. In spite of being the front-line legal eagle, constrained by all the strait-jackets and inflexibilities of law, the said Dame felt for this poor captive woman and ruled in favour of her right to have the ventilator switched off. Quite right too.

  Ahhhhah! I have an idea for my own death – my choice but wrapped up in legitimate legal paper, tied up securely with the string of medical obligation, and franked by society. Yes!

  Diane Pretty – same gender, same age, same wish to die – got a completely different verdict. In spite of being so far advanced in her disease that she couldn’t even speak without a machine, she spent precious weeks struggling in her wheelchair to various courtrooms to plead for the right to have her husband help her to commit suicide without risking legal punishment. She (with her husband) persisted right through to the European Court of Human Rights but she was denied that right. It’s a criminal offence to assist suicide, full stop, these bewigged and befrocked and benighted mighty ones decreed.

  And Diane Pretty had MND. She died the death she had feared. In a place, at a stage, in a way, at a time, not of her choosing.

  So. Does this answer my queries? I guess writing it down helps me feel more sure about what I do not want.

  1. There’s no apparent reason why I shouldn’t remain perfectly mentally competent.

  2. I might get to a stage where I can no longer express my wishes.

  3. I might reach a point where I am unable to take my own life without assistance.

  4. I have a legal right to refuse treatment even if it means I will die.

 
; 5. If the doctor caring for me objects he must hand over my care to another doctor.

  6. Ending my life in any other way holds perils and potential pitfalls for me and for anyone else involved.

  Hmmm.

  Conclusion – suicide earlier or refusal of treatment later. If the latter, my wishes need to be explicit, but it might be ages before there’s any significant treatment to refuse.

  Naomi shrank back from the screen. Here it was in black and white; tangible evidence of the closed door which had kept her out.

  After his first attempt to take his future into his own hands, she’d broken down in front of Dr Curtis. Why had Adam excluded her from his intentions? How could he be so thoughtless as to what this meant to her, she’d sobbed. She’d clung to his reassurances: Adam was only trying to protect her, spare her the burden of his agonising. But why couldn’t he see how hurtful it was to be shut out like this?

  Dr Curtis had let her weep. Then gently, as if thinking aloud, he’d suggested she tell Adam what it felt like from her perspective.

  ‘But I don’t want to make him feel worse,’ she’d wailed.

  ‘A good cry together is just what you need,’ he’d told her firmly. ‘You’ve been protecting each other for too long. You need to reach out to each other, both of you share what you’re going through. And make it soon.’

  Don’t leave it till it’s too late to communicate freely, her inner voice had supplied. Or until a crisis forces a precipitate decision. Or until he’s been successful in his suicide attempt.

  ‘It doesn’t need to be confrontational. Just talk about what he’s thinking, what it feels like to you. And start off gently. Maybe re-visit the issues every now and then. Emotions fluctuate a lot in these circumstances. How he feels today won’t necessarily be the same as what he thinks in two months’ time. And it might help you both to voice your emotions.’

  Her blotched face when she’d gone back to sit beside Adam had been enough to open up the questions. He’d held her tight, promised to share more in the future, they’d talk properly when he got home.

  But that had been later. Much later.

  She dragged her mind back to the spring when he’d written this entry.

  Here it was again. She was part of the problem. She’d made him resent her. She’d forced him to bottle up all his uncertainty. She’d denied him his choices.

  ‘I’m so, so sorry,’ she whispered.

  20 MAY—The muscle cramps and spasms are definitely worse. Just as I’m starting to relax in bed at night it’s as if Nemesis says, ‘Hey, big guy, don’t forget, I’m still here.’

  Naomi is brilliant and even when the cramp stops play, she seems to be unfazed by it. I’m the one who feels tetchy.

  Last night’s episode was particularly frustrating and I stomped up and down in the shower room, glowering at my reflection and slapping the tiles at each end as I paced. All the flapping about made my dressing gown slip open: shades of Belsen and Ethiopia! I think it’s fair to say I’ve never been inclined to narcissism but I was sick to my stomach in that unguarded moment. Where my muscles once bulged they now suck in like a partially-deflated balloon.

  When did this start?

  Who else has noticed?

  Or is it a trick of the subdued lighting, casting shadows where the full beam would give me flesh and health once more? I didn’t switch on the main light. Instead I crept back to bed and burrowed underneath the duvet, nursing an ache worse than cramp.

  I read yesterday that three people a day die of MND in the UK. I don’t know if that should actually read three people with MND or if it really is the disease itself killing them. There’s a small but significant difference wrapped up in that innocent little preposition.

  The article also said that the average survival from onset to death is twenty-five months. If you’re younger you tend to live longer. As in Stephen Hawking, diagnosed at twenty-one, who’s now in his sixties. Forty years of this!

  I’m obviously going to be somewhere in between, but more towards the geriatric end if the medical fraternity are right in my case. And if I get my way.

  21 MAY—Curtis has confirmed; it’s not a feature of my paranoia. So it’s official. My muscles are definitely weakening. Result? Too little horse-power plus real fatigue.

  So, today I’ve added a veritable armamentarium to the medicine cabinet (to encourage Naomi too, to be honest. She’s still looking peaky ever since those dodgy prawns, though she won’t admit to anything other than tiredness). Well, ‘medicine cabinet’ is poetic licence for a shelf in the kitchen! À la the advertisements there’s zinc, cod liver oil capsules, folic acid, vitamin B complex, Vit B12, Vit C, Vit E – an assortment of minerals and supplements that should boost my depleted reserves, and some multivitamins to bring the sparkle back into Naomi.

  And, heaven preserve us, I’m starting to think gadgets, devices, gizmos; aids to daily living!

  Naomi and Lydia are singing from the same hymn sheet: let people help you with the mundane things, save your energy for more interesting activity. Only it’s Lydia who injects a wicked laugh into her suggestive advice. I guess it’s the old mothering, nurturing thing. But me? Nope. Maybe it’s male pride but I find it easier to deal with using a gadget to enable me to retain my independence, rather than accepting help from others that just underlines my growing dependence. And at least for the time being, I’m the choir-master.

  12 JUNE—It’s Nemesis’s anniversary today. One whole year I’ve been doing battle with it.

  One article I read said the average time from diagnosis to death was fourteen months – although Devlin says diagnosis is too variable a marker to be useful. On that basis, though, if I’m your average ordinary Joe Bloggs, in two months’ time I should be dead.

  When I stopped to reflect on that little pearl of wisdom I asked myself: Do I feel nearly at the end?

  Answer: No.

  Is life so intolerable that I wish I had only two months left to go?

  Answer: No. Not yet.

  Naomi let her breath out slowly. Maybe it was worth the pain to glean these precious fragments of reassurance.

  Hmmm. As a newspaper hack I’ve long been tuned in to the opportunities of anniversaries, and old habits do indeed die hard because today my own personal anniversary started me off on a feature on sport. I wrapped the autobiographical elements up in an impenetrable disguise, of course, but I waffled on about athletes preparing for sports and developing muscles and having goals, etc etc. It occurred to me that Rev. Castlemaine might build a sermon along those very lines. You know, preparing for the race of life. Shades of the Apostle Paul in his letters to the young churches. Heavens! My mother would start to get glimmerings of hope for my eternal welfare if she could see how much I’ve retained of my childhood legacy!

  At 4.15PM I had this weird experience. I was watching the second hand tick towards blast off and I distinctly heard last year’s news dropping with a resounding hollow ring into a deep hole somewhere inside my head. The echoes were still reverberating inside me when it registered: the protective numbness has gone but the sound is less harsh now. It’s as if the year has muted the stridency, or perhaps I have become desensitised to the discordance.

  Given the significance of the date, I thought I’d pop in and see Lydia but when I rang the surgery to arrange it, the receptionist said, stiffly I thought, Lydia was off sick. My subtle enquiries were effectively stonewalled. There it is again. I am the wrong side of an unbreachable wall. My carers may know everything there is to be known about me; they may take unspeakable liberties with my body; they may seek to invade even my mind, but I may know nothing whatsoever about them outside of their professional roles. The gatekeeper made me an appointment with the locum person. But even before I met her I knew she couldn’t fill Lydia’s shoes.

  Not today, anyway. Perhaps not ever.

  Véronique. She says it with a French roll of the tongue but in all other respects she sounds like a thoroughbred Sloane. Véronique is every
inch the model physio: trim athletic figure; impeccably groomed; efficient but kindly; a ruthless time-keeper; bracingly encouraging. In every way she appears to outstrip Lydia in the objective tick boxes. Furthermore, she did her job blamelessly, putting me through Lydia’s programme, consulting Lydia’s notes, deferring to Lydia’s expert knowledge of my case. But she isn’t Lydia.

  I came away unusually low in spirits. I pray Lydia’s indisposition is brief and chide myself for missing her cheerful flirtation, for being this dependent on her support. I am weakened by her absence on this day of all days. I feel naked, vulnerable. Afraid.

  28 JUNE—Another bombshell dropped today. I was telling Naomi about Harry’s latest iniquities when she suddenly said, ‘Why are you putting on that daft voice? Does he talk like that?’

  I stared at her.

  ‘What daft voice?’

  ‘Talking through your nose like that.’

  She knew from my face it wasn’t part of my nonsensical repertoire and she instantly started to back-track. But the door had clanged shut.

  The manual says it happens when the soft palate weakens and air escapes through the nose when you’re speaking. So on top of all the other changes to the original model, I now have a nasal voice. In itself I don’t see that as major major league. But what it does tell me is scary. Big time. Mega.

  The paralysis is creeping higher. It’s inching towards the centre of my existence. My communication skills. It’s a boa constrictor wrapping its massive body round its prey, inch by inch, until it has gained complete mastery, when it will pause momentarily to enjoy the sense of power, before crushing the very life out of its prey.

  But then… nobody at work has mentioned my speech. Not even Harry. Maybe it’s a subconscious thing. Maybe I read about this early on and some recess in my brain has thrown up this idea and my body is just trying it on for size. When I’m relaxed at home. Devlin’s warning rings in my ears for the umpteenth time.