Right to Die

by Hazel McHaffie

  He’s chairman of the local branch of the Scottish MND Association and wonders if I would consider coming along to talk to ‘his’ members – worse than doctors claiming ‘their’ nurses. Presumably he’s got where he is because he talks like an officer and a gentleman, but who gave him the right to appropriate a motley band of human beings from all walks of life as his own? Maybe he thinks he bought it.

  Well, Lieutenant Colonel Grant-Hartwood, I do not intend to get sucked into your unhealthy little empire, thank you very much.

  I have an aversion to self-help groups.

  I do not want to hold a mirror up to my future disability.

  I do not want to feel crushed by the stories of others snared in a net of the same fabric as mine. I do not want to be identified with them.

  I do not want to smell their incontinence, listen to their grunting, or weep at their graves.

  Sufficient unto the day my own evil.

  So thanks, but no thanks.

  You may think my story would be ‘inspirational’; I know it is not. Underneath this façade of success there beats the miserable frightened heart of a confirmed coward. I work on the principle that if I keep shtumm (how do you spell that?), people may suspect my deficiencies; if I open my mouth, I’ll leave them in no doubt.

  Furthermore, you, Lieutenant Colonel, no doubt hold a chestful of medals for valour on the killing fields of the world; I, on the other hand, am implacably opposed to the senselessness of war, so if your commandership is what I think it is, we have nothing in common but our membership of the same species, and might well come to blows on the platform of your little closed society.

  I wrote him a polite but brief letter, declining on the grounds of pressure of work.

  Guilt smote Naomi. It was she who’d agreed they could contact him, but only once they’d told her he’d rung the Association. She flicked back through his entries. Yes, there it was. Bonfire night. Who knew what he’d said!

  19 NOVEMBER—I’m only just beginning to appreciate how much that infection dragged me down.

  Aidan’s story is rushing ahead like a river in spate. I fill pages for hours together; not so good for my joints and muscles because I’m immobile in my concentration, but brilliant for my mental welfare. During the night, scenes flash before my eyes with such clarity I have to get up and commit at least a few gems to the computer; to lose them in the receding dreams would be too profligate.

  In spite of all this disturbed sleep, I am truly alive. The adrenaline rush of creativity is better than any stimulant I’ve experimented with. And I confess I’m glimpsing the truth of Curtis’s wisdom: the sheer pleasure of this life is enough to weigh the balance in favour of another day. I cannot leave without telling the world what happens to Aidan. The pull of nothingness has lost its appeal.

  Having committed the latest instalment of Aidan’s story to my working file (and to a floppy disc and a CD and my zip drive and to the trusty archive), I have pause for reflection. Aidan’s questioning merges with my own to such an extent that our parallel worlds frequently cross over these days. Deliberately standing back one pace from his path right now, I am resolved to consider my own real-life position. Dispassionately. From the high ground of my present contentment.

  I suspect that depression was distorting my judgments in the past. This is probably as good as life can be for me. The time to formulate my plan for the future is now. These are the decisions which I should translate into legal-speak.

  So what do I feel? – now; when I wake up glad to be me, when I fall asleep eager for another day.

  I want to finish my novel, definitely. I have plans for my other writing.

  I want to keep writing for the paper as long as I can reach my own standard of prose, as long as I can exercise influence for good.

  I have dreams for myself and Naomi; sensitive, unspoken dreams – even I tread softly around them.

  I am prepared to accept some – limited – assistance to further these aims.

  At the point where this low level of augmentation is no longer sufficient, then I’d like to go swiftly, painlessly and with dignity. No heroics, no rescue missions.

  How? That’s still the big question.

  1. Suicide? Preferably not.

  Why?

  a) to protect Naomi and my mother and Joel from the backlash

  b) in case I botch it and irretrievably damage my relationships with these special people

  c) because I don’t want to repeat history.

  2. How then?

  In order of preference:

  a) an accident – swift and clean

  b) a sudden life-threatening condition at the right moment, requiring

  immediate treatment, which could then be withheld, no recriminations on anyone’s head

  c) Doc Curtis easing me out of this world – again with no hint of suspicion or blame.

  The formal declaration of my Advance Directive will have to be more judiciously expressed. Is my request reasonable under the circumstances? In essence:

  • I do not want to live beyond my usefulness.

  • I do not want to be a burden on others.

  • When I can no longer contribute to society I want to go painlessly and with dignity.

  Quite reasonable.

  Later Curtis called in after surgery again today, bringing me another Jonathan Kellerman medical thriller he’d enjoyed. I tried a surprise attack.

  ‘Are your rights and responsibilities more important than mine?’

  ‘Hmmm.’ Long pause. ‘No. I’d say they’re equally important.’

  ‘Well, that’s the first time I ever heard you boasting, Doc!’

  He grinned at me.

  ‘See, I’m actually putting my value lower than other people’s,’ I said in a preening way.

  ‘You are? How come?’

  ‘I don’t want medical technology and skill and resources to be devoted to me until the last squeak; let them go to other more needy cases.’ I sketched a halo over my head and quick as a flash he crossed his fingers, making us both laugh.

  ‘Okay, you’re a self-abasing, card-carrying hero. So?’ he said.

  ‘Well, you were the bloke who found me hanging over a precipice. You strapped the harness around me, hung the safety net under me, designed the whole damn expensive package of care. Why shouldn’t you be the one to cut the safety wires?’

  ‘Because my conscience and my ethical code don’t allow me to – much as I appreciate your graphic depiction of the situation!’

  ‘But say you did do it, what effect would that have on you?’

  ‘Huge qualms of conscience, self-reproach, criticism from colleagues, vilification from the public, crucifixion by the media, end of career; just a few little hiccups like that.’

  ‘So I need to fall into the clutches of a touchy-feely Intensive Care guy who’s been breastfed on the milk of human kindness, who’ll agree with me that free-falling into death is the kindest option.’

  He shrugged. ‘You could always try to find such a specimen.’

  ‘Or a hard-nosed economist who’ll see that vast sums of dwindling resources should not be wasted shoring up this waste of space that used to be me.’

  ‘You’re persistent, I’ll grant you that,’ he conceded, smiling ruefully.

  ‘But am I persuading you? That’s the question.’

  ‘I can see where you’re coming from.’

  ‘A glimmer of a concession… Wow! Blimey, you’re hard work, Doc!

  ‘So my wife tells me!’

  ‘Seems to me, society has handed you sawbones a disproportionate amount of magisterial authority. I accept that you inevitably hold an impressive hand of cards here. You have all the medical knowledge; dispensing only that information you decree the patient should share. You have the power to put a spin on it to suit your purposes. You hold the keys to treatments. You can summon up legions of colleagues with expertise to support your position. Whereas I am as powerless as a newborn babe.’


  ‘But a lot more articulate!’

  ‘I’m under no illusions. It’d take a very astute lawyer to win my puny case.’

  ‘Are you thinking of going down that route?’ he asked mildly.

  ‘No. No point in pitting an amoeba against a dinosaur. I don’t want to spend my last days setting my dwindling reserves on a collision course with the establishment and getting nowhere. Nor do I want even more money wasted on a cause doomed from its inception.’

  ‘Very wise.’

  ‘Like I say, you’re hard work!’

  ‘Sorry. If it’s any consolation I sympathise with everything you’ve said. And agree with most of it. Goodness, I’ll probably regret admitting that.’

  ‘But you still can’t see your way to a nice dose of strychnine, huh?’

  ‘Something like that.’

  He’s a worthy opponent and does me good just being a listening ear. I’ll soon need to stop all this pondering and commit my wishes to paper with a legal seal, and expose them to the scrutiny of witnesses. I have in mind getting Curtis to check them over first.

  Every time Naomi read his arguments she felt the power of his logic. Why then had it gone so wrong for him?

  26 NOVEMBER—I’m amazed to realise I haven’t scribbled in this diary for a whole week. In that time Aidan has graduated from a zimmer to a wheelchair.

  Today I went to see Devlin for my four-monthly check. He had a pretty Italian student with him. With some inner reluctance, I gave permission for her to sit in on my consultation.

  Devlin was sombre in dress (a black shirt with a dark purple tie has the effect of royal mourning) and strangely reserved in manner. I felt a curious distance between us that only served to exaggerate my clumsiness. His look sharpened as I fluffed his mini-tests and extended the examination with my slowness.

  ‘I was typing until 11.30 last night,’ I said. ‘I’m not like this at home.’ And in a last ditch effort to regain my position, ‘Must be the effect of a young lady in attendance.’

  She gave a half smile; who knows what she thought? Devlin’s eyes rolled but only within their customary orbits.

  When I was on the couch, he made no effort to offer her liberties with my person and she stood discreetly just outside my line of vision. As his hands did what they were expensively trained to do, his voice probed my experience looking for the outer limits of my present abilities with more persistence. His concentration by now was absolute; there was no teaching of Miss Carla Bendetti, and I knew my façade was crumbling.

  The physical bit behind us, and both now vertically inclined, the inequalities were less obvious. I started to relax. It was strangely soothing, placing the absolute truth about my weakened state in his hands, although I wrapped it all up in blankets of qualification: maybe I was imagining it; I was no expert; that’s just what it felt like to me, but I could be wrong.

  Without prompting he reassured me on several points. A distressing death from MND is rare. Pain is unusual. Cramps, pressure problems – there are preventive as well as alleviating things they can do for most symptoms. I’m already in the hands of the experts: the GP, nurses, physios.

  By this time I’d forgotten the intruder. I found myself telling him about the tiredness.

  ‘Describe a typical day,’ he said.

  He listened without interruption.

  ‘And you wonder why you’re tired?’ There was a wry note in his voice.

  ‘I was hoping it’s a relic of my bad spell a few weeks ago. I did get very run down.’

  ‘The infection won’t have helped but I think you have to accept a certain amount of reduced energy levels at this stage. It’s a matter of prioritising. Decide which are the most important things you want to achieve, and work out a strategy that allows you to reach that goal with the minimum amount of effort. I know it’s hard for someone as energetic and busy as yourself, but you may have to set more limited goals for each day. Driving yourself too hard is going to be counter-productive in the long run. Think of it like a purse full of coins, each representing so much energy. Once it’s empty, no amount of shaking will extract any more. It’ll just leave you more exhausted for the next day.’

  I shrugged, but gave no concessions.

  ‘It’s not easy to give yourself permission to ease off, I know. Feels like self-indulgence. But you’ll actually achieve more if you learn to conserve your energy.’

  It’s perfectly true: I do need permission not to work till I drop. It’s a genetic pre-disposition.

  He couldn’t have been too disappointed overall, however; he gave me another four months’ grace.

  Now that I’ve written up my account of Devlin’s assessment, I have this crazy picture of him as a little man in a sombrero and a striped poncho, prancing about in front of a donkey, dangling his carrots of hope in front of me. Maybe it’s good medical practice, but in circumstances like mine, it has to be a much over-rated section of the doctors’ guidebook.

  I have nightmarish visions of things going wrong in spite of careful planning, so I’d planned to check out the rules of engagement vis-à-vis resuscitation ready for my advance directive, but somehow Miss Carla Bendetti’s ears were too young and idealistic for the frank discussion I’d envisaged. I feel an obligation to preserve her hope too.

  ‘If I request, and you agree, that a DNR order is appropriate and you enter it in my notes, how do we ensure it’s adhered to?’

  ‘The decision would be clearly documented and flagged up to ensure everyone knows it’s not for negotiation.’

  ‘So there would be no margin for an individual with scruples flouting it?’ I have this vivid picture of my mother at my bedside when I collapse, leaping up and down, imploring them to do something. Out-of-the-loop staff might instinctively respond to her distress. Or juniors, who measure the success of their shift in terms of the same number clocked out in the morning as they inherit when they come on in the evening, might rate their own credentials more highly than my unheard request.

  ‘Hopefully not.’ Guarded. There are no guarantees.

  ‘I do not want degrading rescue efforts. There’s absolutely no point in returning for more humiliation, more suffering, more goodbyes, more tears.’

  ‘I understand,’ he said calmly.

  ‘I don’t want ventilators, or feeding tubes, or antibiotics. I want them just to let me go.’ Carla Bendetti was forgotten.

  ‘Right.’

  ‘There wouldn’t be any repercussions for anybody in this case, would there?’

  ‘Not if your wishes are clearly recorded. And things are sufficiently advanced.’

  It’s some small comfort.

  Adam made it all sound so logical, so reasonable. In the same situation, Naomi knew she could not have expressed herself so cogently. She’d have relied on Adam… if only!

  27 NOVEMBER—The NHS seems to be tightening its purse strings. Or the folk on the sharp end are taking seamless care seriously. I had an appointment with Lydia, but Curtis sneaked in to have a quick chat while I was with her. She popped out to get some special cream or other, he popped in, like the weather heralds on Austrian clocks. Except no lederhosen, no dirndls, no edelweiss.

  How did I get on at the hospital? he wanted to know. Full marks for registering the date. More likely his memory was jogged by seeing me arrive, or catching sight of Lydia’s list, and he checked. I gave him a resumé and he listened intently. Did I need more help? Was there anything he could do? A sick line, maybe? No. No. No.

  He left with the ball squarely in my court: just give the surgery a ring if you want anything.

  I hate to admit to disappointment: what a prima donna! Why shouldn’t he kill two birds with one stone? I’m there in the vicinity of his surgery; it makes sense for him to see me too. He’s got a few thousand patients; probably all of them want to be top of his list. What gives me a greater claim? Until this all started, I wouldn’t have even recognised him in the street.

  A cautionary tale, indeed.

  Lydia ret
urned to the room on cue. Not much escapes her perspicacious eye and she instantly adopted full Jamaican disguise.

  ‘Why, Mister O, you sure are looking weary. You been overdoing things again when my back was turned?’

  ‘Ahhhhh, Lydia. It’s a fuel injection I need, not another lecture.’

  ‘Oh my, oh my! Things sure ain’t right when you try to pick a fight with your number one admirer.’

  ‘Forgive me. I’m sorry. I’m in disgruntled mode. I’m not looking for a fight – least of all with you. It’s just that I’m sick and tired of people trying to clip my wings. I know I’m getting weaker. I know I haven’t got the stamina of a month ago. I know I have to shrink my world. I know I’m soon going to need assistance. But does everybody have to keep rubbing it in?’

  ‘Is that what it feels like where you’re sitting, honey?’ Her silky voice let the words slither round my sensitivities.

  ‘I know everybody means well, and I know they want to help, but it’s my last chance to stay in control here. Once I acknowledge defeat, I’m on a slippery slope to dependence. I’m hanging on by my fingernails.’

  ‘I know, I know.’

  ‘I accept it takes me for ever to get showered and dressed in the morning these days, but damn it, I can still do it. I’m like a slug in a blizzard walking from room to room, but I can still do it. Is that so wrong?’

  ‘Not if that’s your priority.’

  ‘It is and it isn’t. The bathing and the walking themselves are not. Hanging on to my dignity and my independence is. It’s a symbolic thing. Once I concede, where do we go next?’

  As usual she was getting on with her therapeutic tasks while her tongue ran off down different escape routes.

  ‘And how’s the little lady coping with you so churned up?’

  I stared at her impenetrable expression for a long moment.

  ‘I’ve no idea.’ The words dragged out slowly. ‘I didn’t know I was.’