Right to Die

by Hazel McHaffie

  ‘Thank you for sending us’… ‘intrigued by the synopsis’… ‘the first three chapters hold promise’… I stopped and started from the beginning again.

  No, I had understood correctly the first time. They want the whole manuscript! Yes!

  Slow down, O’Neill. This is by no means acceptance. But someone likes the beginning enough to give it a whirl. I think I may be permitted a modicum of satisfaction.

  Joel ran me off four full copies a few weeks ago – in readiness for the fierce competition for film as well as publishing rights! So all I had to do was write the specific reply to Anthony Frobisher (Editorial Director, Omega Press), and get Naomi to package it up and post it off tomorrow – well no, perhaps in about three days’ time. Don’t want them to think I’m desperate.

  It’s like walking out of a dark cave into brilliant sunshine.

  I must keep a check on unrealistic expectations.

  Seeing myself through Joel’s eyes this week, I’ve suddenly become much more aware of the deterioration in my swallowing. I’m dribbling like a baby cutting four incisors at once. And regurgitation is a real problem. Apparently my diaphragm is weakening.

  ‘Picture a steel band around your body holding all your organs in place,’ Curtis said. ‘As it slackens, things start to migrate.’

  The acid and food reflux is an offshoot of this migration, it seems. It helps marginally if I stay upright after meals. I’m still waiting for the Speech and Language Therapist to advise me on this. It’s been nearly four months since Curtis and I agreed the time had come to see one; three weeks since Lydia blew her gasket – not that I’m pathetic enough to be counting the days; I just checked back, using the search facility. It probably means that the managers don’t hold out much hope of her being much use in my case, better to spend her valuable time where she can make a difference.

  Hey ho! Joel already jokes about my ‘retinue of servants’.

  12 JULY—Talk about coincidence! A young lady answering the S< description actually made contact today – rang in the morning, came in the afternoon.

  Chloe. Friendly but brisk. She overrode all my petty reservations. I expected a posh elocution teacher, instead I got a thoroughbred Scottish lassie who is three parts common sense to one part private education. (As soon as I knew she was Edinburgh born and bred, I asked the ritual second question, that’s how I know she wandered the converted hotel corridors of St Margaret’s School for Girls.)

  Today’s shared wisdom included making a conscious effort to swallow more frequently, having my head better supported (she’s gone off to find a proper headrest for my chair), and sleeping on my side so that the saliva doesn’t pool in my throat. The simplicity of her measures appealed to me. While she was rummaging in her bag, she muttered something about a suction machine but I didn’t understand the words frilling round the edges even on a second repeat. It can wait.

  Naomi said she felt reassured too. Like Devlin, Chloe said in reality choking is relatively common but rarely fatal. If and when I choke, she said, Naomi should resist the temptation to slap me on the back; that would just make me breathe in and exacerbate the situation. She’s to keep calm, try to retrieve whatever’s causing the choking (yuck!), and get me to lean forward with my head above my knees.

  I had to laugh. They both looked at me as if I’d flipped my lid. But the thought of me being able to bend into a preordained position at this stage in my paralysis was irresistible. They eventually saw the point but the smiles were faint. Apparently the Heimlich manoeuvre is rarely necessary. Just as well given the impossibility of Naomi getting us both into position to carry it out.

  Chloe also explained another phenomenon that’s been more annoying than painful. My eyes sometimes feel like balls of grit, and yet I seem to have an overflow of tears. It can be embarrassing; must look as if I’m weeping when I’m not. Chloe says it’s another feature of the loss of muscle tone; as the facial muscles slacken, even normal quantities of lubrication overflow. Marginally easier to accept once you know.

  This new therapist has wafted into our disorderly lives like a breath of spring. I now regret my past stubbornness.

  Later Digby Arkwright came this evening. It crossed my mind to wonder if Harry knows about these visits, and if so, what he thinks. He, of course, sends no messages. As far as I know, he has forgotten I ever existed.

  Anyway, Arkwright liked my piece in principle but had a few minor amendments to suggest. And he was spot on every time. I’ve sometimes wondered if his comprehensive approval lately has been merely a kindness to a dying man, but when I showed my appreciation for today’s critical comment he reassured me on that score: even if he felt inclined to go gently in my case, nothing I write goes out with a footnote about my condition, so it goes into the race with the able-bodied scribblings.

  My kind of language.

  14 JULY—In my dippings into this diary for Arkwright’s piece about my disease, I’ve become aware of a change in my intentions vis-à-vis these reflections. I need to make them explicit.

  At the outset they were for my own release, my eyes alone. I have become increasingly aware that Naomi needs an explanation. I want her to understand more completely why I’ve been as I’ve been. So today I wrote a note to her and labelled the envelope: ‘To be opened in the event of my death’. It gives her the names of the appropriate files and express permission to access them.

  While I was tidying things up, I checked my living will again. It still represents my considered wishes.

  I hope my death can be engineered within the law and the boundaries of medical permissibility but I haven’t ruled out something on the grey side of that line. Oh, and on that subject, I need to record my latest musing. I might write a piece on the distinction to be made between legal and legitimate. *(Ideas folder: legal v legit)

  Legal = what the law allows or dictates.

  Legitimate = what we believe to be right and proper, a kind of intuitive morality, a sense of natural justice.

  It seems to me, it’s this intuitive sense of right and wrong that underpins a civilised society. It’s about according universal respect and dignity to one’s fellow man, not because the law tells us we must, but because our innate sense of right tells us to. It’s about those things that aren’t enshrined in law, but a strong moral imperative exists to do them nonetheless. Legal imposition feels more restrictive. Doing things because they feel right is more a matter of personal choice, a freedom to do it this way because of inherent values and legitimate standards set in a context of communal good.

  Wow! Where did all that come from?

  Ergo doctors ought to respect my wishes because of the essential rightness of them. If it’s known you’ve discussed the advance directive with a doctor, it has extra clout, improving your chances of having your wishes followed. Brownie points there, then. Curtis has documented our agreements. And signed my directive. And promised me that he’ll do his level best to protect Naomi from any compromising situations.

  If only the guy would agree to be active about this himself we could all feel more secure. Medical consciences!

  Later The Reverend Ernest Kane called again today. I think he more than merits the title of Very Reverend, although I don’t actually understand the real distinction in church terms. I couldn’t help but notice he had a hole in his sock, because he’s wearing… Jesus sandals!! With socks. Holey socks. Holy socks!

  He came right out with it: he was shocked to see the state I was in. I surprised myself by my instant response. ‘Blessing in disguise. The faster the end-stage, the better for my sanity.’ That from me! – utterly and implacably opposed to the Pollyanna principle!

  He raised an eyebrow but let it pass without comment.

  As before, he instinctively adapted his pace to mine. He enquired about my novel’s progress and said something kind about the contribution I can still make.

  ‘I see a lot of lonely people who get precious little reinforcement in life,’ he said quietly. ‘If you
don’t feel valued by others, it’s a lot harder to appreciate your own self-worth.’

  Is that why he goes about making everyone feel valuable, I wonder?

  ‘You evidently have a lot of reinforcement. From your writing. From your friends and family. From colleagues and people whose lives are the richer for having known you.’

  ‘But it makes for complications,’ I said slowly, my brain galloping ahead of me.

  ‘Yes?’

  ‘When I first found out I had this disease, I wanted to die while I still had most of my faculties. Now look at me! I’ve drifted into exactly the situation I was so desperate to avoid.’ Did I sound bitter? The thoughts were tinged with sourness as they formulated. ‘If I could have just suited myself, if I’d been one of your loners, I could have ended this exactly when I wanted to.’

  ‘So what made you keep going?’

  ‘My wife. My brother. My writing. My GP.’

  He tilted his head questioningly, not making the connection.

  ‘He refuses to help me die.’

  ‘Ahhhhh. I see.’

  ‘So I’ve sunk into the depressed and morose freak you see today!’

  He smiled gently. ‘Oh, Adam, “wad some Power the giftie gie us…”’

  ‘Oh, I’m quite sure “ithers” see me in just the same way,’ I flashed back. ‘I don’t like what I’ve become either. I never used to get depressed.’ It somehow blurted itself out without my permission.

  He sat in silence. Waiting.

  ‘It’s a particularly hard thing to deal with,’ I ground out.

  ‘I can feel that.’

  Again he simply waited.

  ‘My father committed suicide. He suffered from depression.’

  ‘Ahhhh.’ A long pause. ‘But in your case depression is perfectly understandable.’

  ‘I tried to end it all back in the spring. Someone intervened.’

  ‘D’you wish you’d been successful?’

  ‘Yes.’

  ‘Has anything good happened since? Or has it all been bad?’

  ‘Well… there’ve been some good times, I suppose, but there are certainly bad times I regret having survived for.’

  ‘Do you still have goals you’d like to reach? Seeing your book published, perhaps?’

  A baby. It just flashed into my head, unbidden.

  ‘Not now,’ I said. ‘And I know I shan’t see the book published, so I’m not pinning any hopes on that.’

  ‘I’m sorry. Is there any way I can help you with living this out?’

  ‘Thanks, but no – unless you can find me a shortcut.’

  I instantly regretted it. I wanted to send him away feeling he had done some good.

  ‘I really do appreciate your coming,’ I said lamely through a sudden rush of saliva. He stood beside me as I coughed and spluttered my way back out of the paroxysm. ‘Sorry about that.’

  ‘You have nothing to apologise for,’ he said, gripping my shoulder. ‘I’m just sorry life has dealt you such a raw deal.’

  ‘This is where I say, “Whom the Lord loveth he chasteneth,” isn’t it?’

  ‘Your mother again?’

  I nodded. ‘It took care of a lot of punishment!’

  ‘There’s chastening and there’s chastening,’ he said gently. ‘Remember the tower of Siloam.’

  ‘Those unfortunates weren’t in her Bible!’

  He half-smiled.

  ‘I was weaned on the idea of unworthiness,’ I said.

  ‘Not one of us is worthy – not even your mother! The only chance is through grace.’ He turned as if to leave and then threw his punchline. ‘And there’s enough of that for all of us.’

  He knew exactly when to make an exit.

  I wish I could be convinced, but throughout my formative years, I had this impossible target held up to me. Every day I went to bed knowing I’d failed. My mother saw to that.

  It’s in my bones.

  Maybe I can fail and still feel Rev. Kane’s confidence. I’ll need to think about that.

  15 JULY—The more stiff and immobile I get, the more impressed I am by these professionals. They make it look effortless to haul me up and frog-march me around. Everything takes forever but they never seem to share my impatience.

  I’ve just discovered that it was Lydia who taught Naomi, and I confess I like to think of these two women in this together, Lydia including my wife in her enormous motherly embrace. Véronique, for all her efficiency, just wouldn’t have been the same.

  I’ve noticed this in life generally, you either warm to someone or you don’t. It’s not so much what they do, as the kind of people they are. I used to have a favourite uncle and aunt. They were spasmodic in their present-giving on birthdays, they didn’t visit often, but when I saw them I just loved them – so much more than the worthy ones who kept calendars and sent cards without fail and wrote me letters when I left home. Unfair, I know, but just life.

  Much as their habits jar, it’s a relief having these paid professionals taking the strain. Naomi may have been well taught but I can see she finds it hard going sometimes – emotionally as well as physically.

  She was right to decide against having a baby.

  I must let her know that.

  This buried jewel brought sudden tears to Naomi’s eyes.

  She still paid a heavy price for deciding to abort the one child they had created together.

  His acceptance of her other choice, not to become pregnant, was some consolation.

  She picked up Noelani and buried her cheek in the thick fur, feeling the warm vibration of the feline heart, imagining the softness of a baby’s breath.

  More intervention! I mentioned to Naomi that there’s a specialist ‘village’ in Aberdeen, a residential facility offering twenty-four hour care to residents with wasting or degenerative illnesses, but with the emphasis on maximising independence and being part of a community. Tailored care. I read out the advertised strong points.

  She heard me out and then said, ‘And you want to move to Aberdeen, and live in a community of disabled people, away from me, do you?’

  ‘No. But I do need to reduce the strain on you.’

  ‘Then let’s get more help,’ she said.

  Today, a mere forty-eight hours later, Lydia called to ask if we’d consider hiring a friend of one of her colleagues, somebody called Brendan Buchanan. Very experienced, including several years working as a specialist nurse in a spinal unit, but currently unemployed while he goes through the emigration hoops for working overseas. He’s been filling in time working as a personal carer, that is until his last patient died, twelve days ago. Sounds perfect – his qualifications, his availability, I mean, not the fate of his last victim! A recommendation from Lydia is worth a fist-full of references (although we’re to get those too).

  I’ve decided he’ll be known as my ‘personal assistant’. Ever since hearing about him, my mind has been racing. What if he’s someone who recognises futility when he sees it? What if he’s big and brave and would hold the syringe or pillow for me? Do the deed; leave the country. Ideal. I have new hope. I am resolved to get him on my side.

  Naomi wanted to make up the room next to ours for him – ‘so he’s within easy hailing distance.’ I have personal reservations about anyone being that close to our bedroom; I want him to be at the other end of the landing, on call by means of a bell. Keeping assistance on our terms.

  21 JULY—Enter Brendan as the next stage of my descent into invalidity. We had a pseudo interview on Friday but the result was a foregone conclusion – after all, none of my other carers was selected.

  He moved his meagre belongings in at the weekend ready to start this morning – not that it’s a nine-to-five job; it just felt right, starting on a Monday.

  I’m not sure quite what I expected. It certainly wasn’t this! Brendan’s six feet tall, solid muscle. Moving me seems like child’s play.

  In spite of an instinctive resentment, I have to admire his physique, but everything els
e seems curiously incongruous in a man of his stature. His skin is luminously fair and freckled. His hair is blond, so fine you can see the pinkness of his scalp through it, like the brave perm on an octogenarian. When he stands underneath the light it gives him an ethereal look. His eyelashes and eyebrows are fair too, but sufficiently coloured to be seen, unlike that albino fairness that makes a face look as if the outline has been rubbed out by the Creator’s eraser. And he has what I can only describe as perfectly etched lips. It’s that sort of sculptured mouth a film star might draw for a plastic surgeon: ‘the exact shape I’m looking for’. He keeps his moustache trimmed straight, well above the lip, not like Harry, whose straggly ends get caught in his yoghurt.

  But this Adonis has one maddening trait: he closes his eyes when he’s talking.

  How I hate that!

  Over the years I’ve been amazed at the number of people who do it. Though I can hardly use it as a reason not to take him on, not when he comes with Lydia’s blessing. Oh, and he’s a tad too liberal with his aftershave for my taste. Well, nobody’s perfect. I daresay he’ll find things about me annoying too – although, of course, he can escape.

  I’m horribly conscious of the fact that if I don’t get this live-in minder on my side, he represents another chain locking me to this life.

  It was curious to see Adam’s first impressions of this man who soon became his shadow. Naomi herself hadn’t been bothered by his closed eyes, only by his invasion of her territory.

  20 JULY—Brendan has already drawn up a list of the key people involved in my care. He says he wants to talk to them all and build up a care package that maximises my potential – and I quote.

  He assures us he’s happy just to take so many hours off here or there, so as to be available for the heavy stuff each day, but I want to keep this properly professional. He’s entitled to days off. Naomi wants to fill in the gaps. Hhhmmm. I do not want her knocking herself up again.

  I like the idea of one full-time person paid to get the job done, who won’t panic in a crisis, and who can switch off the minute he leaves me.