Right to Die

by Hazel McHaffie

  ‘He wanted kids?’

  ‘Oh yes. Very much so.’

  ‘Poor bugger,’ Joel muttered, half under his breath. ‘That, on top of everything else.’

  ‘I just couldn’t have given him that burden too. It was one thing I could do to help him.’

  Joel had given her a swift hug.

  ‘Naomi O’Neill, you are a very special woman.’

  ‘I did have some counselling, so don’t worry, I’ll be okay. Sorry to dump this on you.’

  ‘No problem. And for what it’s worth, I don’t think you should waste another second feeling guilty. You made the best choice you could. It’s done. You can’t change it. And you’ve got enough else to worry about!’

  He’d made them both a strong coffee and by the time they’d drunk it, Adam had woken. Strange really, they’d never returned to the subject but it hadn’t hung between them. A degree of closure had come with that exchange. Joel’s approval had given Naomi permission to move on, not forgetting, but forgiving herself.

  Mavis’s ghost receded.

  ‘Thank you, Joel. Bless you,’ Naomi whispered.

  16 JUNE—I’m positively skeletal these days. Easier for carers and Naomi lifting me, not so good from the point of view of my personal comfort. Cushions and sheepskins help, but sitting in one position is becoming a disincentive when it comes to writing for any length of time. I rail against this particular restriction to myself but it’s too much effort to grumble aloud.

  An increasingly inadequate intake of nourishment is also, I suspect, contributing to the sore throats, the headaches, the general feeling of malaise, I’m plagued by these days. People nag me to eat more – they don’t have to fight for every swallow.

  Today I was feeling pretty sorry for myself when I woke up after a bad night with muscle spasms and nightmares, and much in need of some healthy distraction, so I got the carer to pile extra padding under me and settle me in for a longish haul at the computer. I set myself a target of twelve letters to publishers about Aidan’s Story.

  Reminding myself that it was for Naomi, I managed to persist beyond my comfort point. I no longer harbour any hope of seeing the novel in print myself, but I warm to the idea of her getting something tangible out of this horrific experience. I don’t know why I didn’t start this part of the process a long time ago. Was I subconsciously delaying the date of my death by procrastinating? I’m suspicious of even my own motives.

  The letters completed, I started on my second piece about journalistic experiences and was soon well into my flow and a healthy distance away from my bodily discomforts. It’s an immeasurable bonus to have this best of therapies within my control and at my fingertips – literally! Dave, I salute you!

  I haven’t decided yet whether I’ll do the MND article. I suspect the trauma would outweigh the benefits. Would I gain anything from such an altruistic endeavour? I don’t know. I have a nasty feeling that I might plummet into irreversible depression. Not the state of mind I need to make wise choices about my life and death.

  Later It’s another door closing. A lifeline weakening. I had to give up this morning. It is so frustrating. My mind surges ahead but I get to a point where I simply can’t tolerate remaining in that position any longer. If I can get the bare ideas down it helps; I can lick them into shape later.

  Maybe I need an amanuensis as well as a physical carer! Do they come on the National Health? Now there’s an original angle! Of course, I know it wouldn’t work. Headings maybe, notes possibly, but not the flow that in my case requires absolute solitude. Could I record the ideas onto tape? They’d be there then ready for me to write when I feel able. With my speech problems? Hellloooo!

  This is all exactly what I wanted to avoid. Damn that Madeiran peasant!

  Later again Curtis rang this evening after surgery. Was I up to a visit? He’d finished reading the corrected manuscript and would like to discuss it with me, if I wasn’t too exhausted.

  My thoughts fragmented.

  That was quick!… he’s only skimmed it… he knows it’ll never see the light of day, no point in wasting time over a lost cause.

  He’s hurried through it… he knows I haven’t got long left… doesn’t want to leave unfinished business.

  Why hadn’t he procrastinated, delaying my suicide? He knows something I don’t know.

  He didn’t like it… he could have told me over the phone if it was an improvement on the last draft.

  Do I keep re-writing to suit his preferences? If I do, will it ever be done? Why do I so much want his approval? This is a work of fiction, not a medical treatise.

  His eventual arrival came as something of an anti-climax. He was wreathed in smiles and gave his verdict before he’d even sat down.

  ‘Tons better! Totally consistent now. I like it.’

  ‘Really? You really mean it?’

  ‘Don’t sound so surprised. It’s a masterpiece.’

  ‘But I need it to be authentic.’

  ‘It is. Definitely. It’s a terrific read. And I’ll certainly be promoting it in medical circles.’

  I tried to thank him but it all sounded so trite and hackneyed, so I reached for the acknowledgements I’d printed out just before he arrived and I handed it to him without a word.

  He read in silence:

  ‘A particular debt of gratitude goes to my friend and doctor, Hugo Curtis. Not only did he give me the benefit of his medical wisdom but he endlessly rehearsed the philosophical niceties of assisted death and kept me sane. He helped to shape my thinking on many things and I could have asked for no better companion along the path to my own death.’

  When he eventually looked up, he was shaking his head.

  ‘Far too generous. And quite undeserved. But thank you.’

  ‘Sincerely meant,’ was all I managed.

  In his controlled and measured way, he steered me safely into neutral territory: where I was with getting the book published. And, as so often, he surprised me with his understanding of the publishing process. Just as he was leaving I remembered the question of Digby Arkwright’s request. Curtis, the only person to have read the whole novel, was just the man to advise me on one point. Was there a conflict of interest? He saw none. One was fiction, one was fact. Different style, different perspective, different language, different audience.

  ‘In fact, it’d be a great opportunity to use the newspaper to promote the book, wouldn’t it? If I read that an author had your credentials, I’d be doubly keen to get hold of the novel. Go for it!’

  First get the book accepted then! A great big incentive to get cracking on both fronts.

  Like I say, this friendly neighbourhood GP can be positively inspirational at times. He has shot several places up the pecking order of my visitors. When he left today I was already seeing the dollar signs of a bestseller!

  By the time Naomi had gone in to see Adam after this visit, he’d been engrossed in drafting an outline for the feature on his illness. It had been good to see the glint back in his eyes.

  A sparkling dribble down his shirt-front stopped her in her tracks. It was no longer just a question of co-ordinating breathing and drinking; by this stage, simply swallowing – even his own saliva – had become a huge effort. She could only hope he was so absorbed he hadn’t noticed.

  Eating was already something of a battle ground. Staying well nourished helped to counter the effects of the MND; he knew it, she knew it. But at what cost! The evidence of untouched food-flasks and picked-at meals despite her own or the carers’ best efforts three or four times a day, told their own story. She’d been prepared to accept his eating what he felt like – until Dr Curtis had taken her aside and painted a picture of the consequences: emaciation, pressure sores, constipation… She’d redoubled her efforts to make food appetising. But just knowing the facts didn’t make swallowing any easier. There was only so much you could pack into a smoothie!

  That night, as he stood at the door talking to her, the doctor had looked so grave. Light
-hearted and unconcerned he might have appeared to Adam, but his watchful eyes had missed nothing. For the third time he suggested getting a dietician involved.

  He was sympathetic; he understood why these offers had been declined before, but Adam was still here, and there seemed no point in his refusing what little effective help there was available.

  17 JUNE The first rejection letter came today. Polite – the novel didn’t fit their lists. I’ve had very little training in dealing with failure. Naomi commiserated but she had more pressing news to convey: advice from a dietician. She took a day off work to see this woman, such is her concern.

  I am now to be on the receiving end of lumps of various hues and guises: apparently having everything liquidised is counter-productive since it doesn’t help to keep my jaws working. My fortified drinks are henceforth to be girded about with steel reinforcements. My mashes and slops are to be laced with a huge new range of additional extras to support those said chunks of highly chewable food. Gravy, sauces, melted butter, these are to be my staple diet.

  Naomi did her best, bless her, to sanitise the advice and make a joke of it, saying how she envied me being able to have as much cream and chocolate and sticky puddings as I wanted. I tried to respond in kind: what wouldn’t I give for a massive heart attack right now! Hardened arteries might offer more rigidity to my stick-like legs!

  This damned disease has got me by the scruff of the neck.

  The words that had been too much for her self-control had actually been: ‘This is the lump that makes the jaws act that make the tongue work that deals with the saliva that gathers in floods in the mouth of the man with the bib on.’

  A vivid picture of Adam before the disease struck flashed before her eyes, rushing through the kitchen in the morning, an uncut wedge of toast in one hand, a mug of coffee in the other, gathering papers together, flinging out his expected timetable for her information, perfectly co-ordinated.

  Perhaps that merciful cliff fall would have been a better way.

  19 JUNE—Joel’s here again. I tremble to think what all this travelling is doing to his own schedules. He makes light of it but… Paige is no longer in the equation. I don’t know why and I don’t like to ask. He’d tell me if he wanted me to know. Or is it that I don’t want to find out that it’s down to me?

  Joel had fallen into the habit of ringing most evenings. Naomi had done her best to give him unvarnished reports but despite her warning, he had been shocked by his brother’s gaunt appearance on that occasion.

  There had been no mention of Paige.

  Curtis called after morning surgery. Was it of his own volition? Did Lydia clype? Worse still, did Naomi summon him without reference to me?

  He was concerned about my weight loss, he said, and wondering about a PEG tube. Percutaneous Endoscopic Gastrostomy. Apparently it involves a minor op to insert a feeding tube through the abdominal wall into the stomach. Food can be given as a bolus or be drip-fed or by electric pump, bypassing the mouth altogether.

  My first reaction was fury.

  Have all our discussions meant nothing?

  He understood.

  He wasn’t seeking to prolong my suffering, he said mildly, but to relieve my present difficulties.

  The answer was still no… unless… could he arrange an anaesthetic catastrophe in the process or a massive dose of a killer hospital bug?

  He shrugged. ‘You never know.’

  Once we’d moved out of danger, we talked more about possible escape routes.

  He had no magical solution. But at least I feel he has now recognised things have gone far enough, even for his conscience.

  If a way could be found… I think he won’t stand in my path.

  ‘At the risk of alienating you completely, can I just clarify – you still want to decline the PEG tube?’

  ‘I do. End of discussion.’

  Naomi had felt real concern for Dr Curtis that day. His own powerlessness was clearly troubling him enough, he didn’t need Adam’s constant challenges.

  The wonder of it was that he persisted in going out of his way to support such a complicated patient. She’d tried to apologise; Curtis had stopped her.

  ‘It’s perfectly normal to lash out. Don’t deny him that. I don’t take it personally.’

  But she did, on his behalf!

  21 JUNE—Lydia was briskly British today. Curtis must have told her.

  In amongst her manipulations and massages, while she pummelled my chest and supervised my breathing exercises, she probed for details. When she heard the Speech and Language Therapist still hadn’t been in touch she pounded my rib cage like a jungle drum in time to a denunciation of a system that permitted such deficiencies. She promised to rectify the situation without delay or her name wasn’t Lydia Grace Lovelock. I have no doubt her indignation will already be reverberating in the corridors of the guilty.

  Much as I love her staunch advocacy, I so miss her glorious Jamaican metaphors and her uninhibited conversation. It seems my disintegration has compounded the sorrows of her widowhood and we can’t seem to recover our old camaraderie.

  I feel impoverished as well as very alone.

  Dull apathy, that’s what he needed, just not noticing, not caring.

  23 JUNE—Two more rejections from publishers today. I don’t need this.

  One did say graciously that they’d considered my submission carefully, but I know it’s a standard letter, so I can’t find solace in that assurance. The other one looked as if someone had at least bothered to read the stuff – probably some lowly minion! They commented on my ‘strong writing style’ and the ‘powerful material’, but regretted that ‘misery memoirs’ fell outside the genres they handled. They wished me well elsewhere, ‘sure it will eventually find a publisher and do well’… huh!

  It was Devilish Devlin day today. Three months since my last check up with that prat, Stedeford. Is it really half a year since I saw the big white chief himself? I hadn’t planned ever to see him again.

  He has lost none of his clothes sense in that time out of my view. Green is today’s choice, the colour of a dark forest, soothing on the eye – my eye anyway; both of his are as wayward as ever.

  He watched me in silence as I staggered into his room on my frame. And he seemed to spend an inordinate amount of time flicking through my notes, reading letters, checking reports. In the silence I imagined what van de Veere and co. were telling him.

  Eventually he leaned forward to face me directly.

  ‘So, how have things been?’

  ‘Increasingly intolerable,’ I slurred out.

  He wanted more specifics; he got them.

  He gave nothing away as he examined me. But what was there to say?

  ‘So, where do we go from here?’ he mused, more to himself than me.

  ‘Have me put down,’ I suggested.

  He half smiled. You think I’m joking?

  ‘Dr Curtis tells me you don’t want PEG feeding.’

  I shook my head.

  He leaned back in his chair, lacing his fingers.

  ‘I had a patient in here, earlier today as it happens, who felt the same way as you initially. She’s since had a tube and been surprised at how much stress it relieved. Getting enough food into her was becoming an ordeal for all her family, and the act of swallowing was a constant source of anxiety for her. And she’s had a couple of chest infections from inhaled food. The PEG tube has improved the quality of life for all of them. Her own energy levels have risen because of the better nutrition and because she isn’t now expending a great deal of effort on trying to eat. She tells me she sucks chocolate and has a taste of things she really likes – curry and Chinese food and chilli-flavoured crisps. And apparently one of her grandchildren has asked if he could borrow her PEG tube on spinach days!’

  I rewarded him with a smile. I can only admire his tactics but my mind is made up. I can still lick my Stilton cheese and sip a glass of port. Besides, I have no grandchildren.

 
He made no attempt to put pressure on me, just checked that I knew I had the whole team on board if I wanted them.

  ‘Dr Curtis seems to be on top of everything. I don’t need to see you myself for…’ – long pause – ‘shall we say, two months this time? August? Or are you going away for the summer?’

  I hope to be going away for good, never mind the summer. I simply shook my head.

  ‘Just ring and make an appointment if you feel you should see me before then.’

  I thanked him without specifying that this was my comprehensive acknowledgement of his support. He accompanied me in slow motion to the door of the consulting room, missing nothing of my ungainly exit. I wanted him to penetrate through to my desperation, but he didn’t relent; he didn’t come after me and offer the help I really wanted.

  I willed the hospital car driver to be involved in a fatal car crash. He didn’t oblige me either.

  Later I’ve just watched the video of my fellow-sufferer, Phil Such, for a second time.

  Could his choice – starving to death – be the choice for me? I think not. I just know I’d fail. Even cameras and a publicly-avowed intention didn’t stop Phil eventually succumbing to the urge to eat and drink.

  Naomi shivered, remembering that night.

  She’d walked in just as Phil Such’s carer/girlfriend had been describing what it was doing to her being with someone who didn’t want to go on living. Naomi had slipped away, shaken. Did she have the stamina to see this through to the end?

  30 JUNE—Arkwright rang tonight. Naomi fielded the call. I wasn’t up to a visitor right now, not even Arkwright. I sent a second-hand message: I’m well on the way with the journalistic reminiscences, still undecided about the more personal reflections. He chatted to Naomi for a while and accepted my apologies for today without delving into my reasons.

  I can still see the value of that newspaper feature as a promotional vehicle for Aidan’s Story, but in reality, I’m finding it too emotionally as well as physically exhausting. It’d be at the expense of this diary, and this diary is my principal coping strategy. Brutal honesty, that’s what I need; it’s of no positive benefit to me to write a sanitised version for public consumption at this stage. And I certainly don’t need to concern myself with royalties; Naomi won’t be in want of a pound or two.