Right to Die

by Hazel McHaffie

  1 JULY—Lydia popped in again today. She’d been to some sort of exhibition and seen a gadget and thought of me, she said.

  ‘Does it involve criminal activities in the company of maverick physios?’ I asked her.

  The sudden Caribbean metamorphosis lifted my spirits instantly.

  ‘Why bless you, Mister O, you sure are suspicious of your oldest friend these days!’

  ‘Go on then, reassure me.’

  ‘Weeeell, you’ve been getting tired legs, yeeees? A mite uncomfy round the rear end, yeeeees?’ The sequence of rolled out vowels emphasised her point eloquently.

  ‘A mite, yeeeees.’

  ‘You need something gentle, yeeees? To get those luuuuuvely legs I’ve had my eye on for all these years moving like oiled pistons.’

  ‘And?’

  ‘Well, since I’m your Number One fan, I’ve been thinking. And I think I’ve found the exact right object, Mister O. Yes, sir!’

  She vanished into the hall and then reappeared with a cross between a footstool and a body massager.

  Next minute I was treated to the extraordinary sight of Lydia squeezing her ample frame into the chair opposite mine and hoisting her legs up onto this rolling contraption. She pressed a button and her feet began to move back and forth on the rows of polished wooden balls. Once a steady rhythm was established, she leaned back with her eyes closed, a beatific smile playing on her lips, as if she was experiencing something wonderfully satisfying.

  ‘Lydia,’ I said, ‘You give every appearance of once again exceeding your brief!’

  She opened one twinkling eye.

  ‘Now Mister O, after all we’ve been to each other, over the years, I hope I can depend on your discretion. I’ll leave this little beauty free for you in exchange for your silence about my irregular manner of working, yeeees?’

  I had to laugh.

  She sprang out of the chair and next minute she’d manoeuvred the contraption under my feet and her powerful hands were ‘walking’ my legs in mimicry of her actions. Once the footstool started to move rhythmically she withdrew and beamed at the effect of this effortless exercise.

  ‘You’re a genius,’ I said. ‘I owe you.’

  ‘Neat, huh?’

  ‘Fantastic. Where did you find this little gem? Or did you invent it?’

  She may not have invented this gadget but I have a strong suspicion that she it was who patented her particular brand of getting truculent patients on board.

  She rocketed back up my list of favourite people.

  Later It really is bizarre how often my visitors come in twos. Like buses. Only tonight I feel as if a whole depot full of buses have driven through my day.

  Not long after Lydia had gone, Curtis rang to see if it would be a convenient time to come round; he wanted to see both of us, there were things we ought to discuss. Intrigued, I agreed – I happened to know Naomi was home tonight because we’d made a tentative arrangement to be in together to watch a travel programme that included Madeira. I’d observed her carefully when I made the suggestion and hadn’t detected any reluctance, but now when I came to think about it, recording it might be safer.

  Curtis doesn’t shirk the grotty tasks, I’ll give him that! He was quite shockingly direct and eloquent – maybe shock tactics were part of his strategy. A summary of his points must suffice. And my reactions.

  a) It’s time to talk about how we’ll manage my death. (At last!!)

  b) An emergency might present and we all need to have agreed a course of action.

  c) Madeira was a turning point for him. (And me!)

  d) He needed what’s been called ‘a pause’. Not a pause to reflect; a pause, a break, from reflection. (This gave me something of a jolt. Maybe that’s what I need too, rather than this relentless thinking.)

  e) The break has clarified his thinking and now he believes the three of us, together, need to try to grasp something rather elusive – partly a matter of careful reasoning, but also something more subtle… more reflective, more comprehensive, more sensitive, more aware. And painful.

  f) He’d start with something concrete: my advance directive. We can safely trust that everyone who knows of its existence will do their best to respect it, given the circumstances. Does it still represent my current wishes? (It does.)

  g) It states, among other things, that I don’t want to be resuscitated in an emergency. But families can’t always envisage what those emergencies will feel like, so it’s best to talk about the possibilities and anticipate just how much we’re both prepared to tolerate.

  At this point Naomi suddenly said in the lightest of tones, ‘If they end up treating you against your wishes, Adam, I could always sue the Trust for trespass to your person and end up a rich woman!’

  I turned to stare at her.

  ‘Where did that come from?’

  ‘Trespass against the person, you mean?’

  ‘Yes.’

  ‘Bertie. He told me.’ Albert Finnegan, a lawyer we know. But when did she discuss all this with him? This woman is a darker horse than I ever knew.

  Curtis interrupted, also in a mildly humorous vein. ‘Unfortunately these cases don’t exactly carry much financial weight. You might still be doomed to penury.’

  ‘Well, please don’t trouble to leave me with an inflated view of my own worth, will you?’ I said sarcastically.

  h) Curtis stated solemnly, when I asked him outright, he wouldn’t himself initiate any heroics to prolong my life if we were both at ease with that. (We are. Hallelujah!)

  i) He would sedate me if I was distressed. (We both agreed with that.)

  j) He outlined some scenarios where I was at the centre of a medical drama that might end in my imminent death. This bit was tough on Naomi – and weird for me too, but now we know and have agreed (in theory at least) what would be best for us all. Curtis alone, I think, has inner confidence in what he would or would not do even in a crisis, but he is the only one of us who has any experience of these things. And he is the only one who isn’t losing the person he loves most in the world. At least now Naomi and I are aiming for the same goals and he knows what they are.

  It’s something of a comfort to have his hand on the reins, to know that he has heard our promises and would, I think, have the strength to help us hold to our resolve. Maybe this was part of his agenda, this reassurance. I pressed him to share a glass of port with us afterwards. The three of us talked of bestsellers and weedkillers, of pedigree cats and damp-proof courses, and by the time he left, I felt composed enough to grip his hand for a long moment to convey what my tongue could not.

  In the privacy of our bedroom that night, I could finally tell Naomi what it meant to me knowing that I had her support for the rest of my life.

  So often at night the doctor’s graphic scenarios had swirled against Naomi’s closed eyelids. She could only pray for the strength to hold firm when it actually happened. Having Dr Curtis so emphatically on her side had been some consolation.

  3 JULY—My fourth rejection letter. I know even bestselling authors have drawers full of rejection slips but stupidly, I thought I’d be the exception.

  The timing is all wrong. I should have done all this when I was powerful enough to thumb my nose at poxy editors who can’t write a decent paragraph themselves but who get off on crushing those who can. Today’s letter had two typographical mistakes in eight lines of text! Some bumptious upstart dismissing my perfectly constructed manuscript – it’s an insult.

  I’m mad at myself for letting this get to me. I thought I was big enough to let it wash over me. Another myth exploded. But it makes Arkwright’s offer all the more tempting. At least I know that what I write for him would be published; he’s commissioned it. That way I can be confident something of my experience lives on; all my effort to live creatively with my disease won’t die with me.

  Another duty-visit from Jerry. I found myself blanking out his newspaper gossip. All that politicking leaves me cold. Was I really once part
of it? I like to think I forged my own path and remained detached from the back-stabbing. It doesn’t matter now anyway.

  I was much more pleased to see IT Dave, even though he did overlap with Jerry. I think he was impressed by my speed with the machine, but he tutted over the state of my desktop, calling me a ‘slovenly worker’! Hey, you’re talking to a dying man here! Apparently the hard drive was ‘obscenely fragmented’ so he pressed keys and created wonderful kaleidoscopes of colour until everything formed into even-coloured bars and he pronounced himself satisfied. He unscrewed things and took the base apart, tinkered around with sprays and brushes and peered knowledgably at a whole board of electronic wizardry.

  ‘You should call me if you need things tidied up,’ he said with a hint of criticism. ‘It’s all part of the service.’

  ‘I would if I knew I had a problem,’ I retorted.

  He shook his head at me. ‘You arty types! Haven’t a clue about how to handle machinery, have you? Doesn’t the reduced speed drive you crazy?’

  I shrugged. ‘It’s just a tool to me. As long as it works. How would I know it was slow? I’m reduced to snail speed myself nowadays.’

  ‘Philistine!’

  It was good to have an opportunity to thank him for giving me such a lifeline. He asked what I was writing at the moment but I got a distinct impression that he wasn’t paying much attention to the answer. Even so, he was a welcome link with the real world, and a decreasing number of people fall into that category these days.

  Apparently he’s a cat lover and Noelani really took his fancy. I thought he’d condemn her long hair in the vicinity of the computer but no; he even stroked the traitor as she curled up in his lap during the long waits while the belly of the machine grumbled a way out of its indigestion.

  Dave’s a big muscular bloke, so I risked asking him to help haul me out of my chair enabling me to stand to relieve the pressure on my backside for ten minutes. The trouble with peripatetic carers is that they aren’t always there when you need them.

  4 JULY—It’s abominably hot and sticky. Sheepskins and cushions aren’t what you need in July!

  After another disastrous night, I was exhausted by the time the carer had got me bathed and dressed this morning, so I slept for two hours. But at least I can; Naomi had unavoidable meetings all day. I’m putting pressure on her to sleep in the spare bedroom; so far without effect.

  My joints are stiffening up. The discomfort is definitely getting worse. Curtis is considering muscle relaxants to ease the muscle cramps and spasms, the only trouble is they may increase my weakness and hence limit my mobility still further. Talk about the devil and the deep blue sea!

  Naomi has finally conceded we need more frequent help. It’s a mixed blessing, of course, having all these unselected strangers coming in and out of my world. I’m the first to accept that I’m a harsh critic of my fellow man, but they do seem to invite judgment. In my present captive and dependent state, I can’t avoid their foibles, so I’m quickly irritated by them. If I wasn’t indebted to them I’d find a useful outlet in using their mannerisms and habits as an endless source of rich detail for my fictional characters, but it would be too cruel to throw their help back in their faces. You wouldn’t catch me doing their job!

  Maybe a little secret exploitation…?

  Cathy talked about herself constantly – every minute detail of her mundane life – all in this affected nasal twang that gets right up my nose!

  Dorothy’s conversation revolved around me rather than herself, but her personal remarks about my ‘smooth shoulder blades’ or my ‘long thighs’ seemed somehow faintly indecent.

  Louise gave every appearance of being breastfed on misery. She couldn’t seem to complete more than an hour of tasks without going out for a cigarette. Foul breath in my face I don’t need.

  Shamus brought a wonderful Irish humour to the business of caring but I found his personal habits left a lot to be desired. I couldn’t quite bring myself to request that he washed his hands at strategic moments, but my very cowardice compounded my tension.

  Findlay was the best of the bunch when it came to manhandling me from A to B. Nobody has got the supporting framework in my chair as exactly right as he did. But I found myself cringing when he said, ‘Yeeeeeeah, right!’ in response to everything I said.

  Kristel’s variation on that theme, ‘Absolutely’ when she meant ‘Yes’, was almost as annoying. And she has a laugh like a mechanical digger.

  Some of my carers have had such strong local accents that I’ve been at a loss to engage in any meaningful conversation with them, but they actually served a useful function: they reminded me forcefully, and rather painfully, of what it was like for everyone else struggling to decipher my own grunts and slurs. Normally I’d have persevered but it’s such an effort to keep asking for a repeat performance, with every attempt feeling the heightened pressure to pick up what they’re saying this time. I just don’t have the space for it now.

  Chas snorted; Hilary kept picking her face… does all this constitute libel, I wonder?

  Of course, these minor irritations are as nothing against the positive things these dedicated people do to keep me mobile, clean, decent and functioning. I am indebted to them.

  Phew! What a relief to get that off my chest! I take comfort from the fact that I’ve kept all these nerve-jangling foibles sternly to myself. I do not want to turn into a Victor Meldrew!

  Naomi stared at the list.

  Her own irritation had been of a different order. She had baulked at the need to be constantly polite to these people who were invading her home. She didn’t want to be pleasant to the nurse who arrived at 11.45PM to put Adam to bed, because it suited her schedule. She didn’t want to be understanding to the helper who appeared an hour and a half ahead of expectation, because the person before Adam on the list died last night.

  She didn’t want everything to revolve around other people’s timetables and priorities.

  But there was more...

  Not long ago I felt that the days were flying by too quickly, rushing me towards my death. That feeling is receding. Some days crawl by and I find myself wishing I could wind the mechanism up tighter and whiz through the indignities faster. It gives me no pleasure to watch every step, in minute detail.

  I must be terrible to live with.

  7 JULY—Another rejection letter today. I found it depressing contemplating the pettiness of my present world last night. Seeing my swollen ankles today, my feet encased in Velcroed slippers, I feel like a social leper. The only marvel is that Naomi still wants to be close to me. I don’t want to be anywhere near myself. I hate the disfigurement on top of the distortion. But her kindness is a constant reproach as well as a consolation. I do not know if I could have been so generous, were our positions reversed.

  Should I try the diuretics Curtis wondered about? But diuretics mean more trips to the loo. More trips to the loo mean more exertion, more help needed, more exposure of my ravaged limbs. Maybe I should just burrow inside a huge quilted bag to hide the whole of my offending body. And never come out.

  This thing is spreading inside me like ink on blotting paper. Soon I will be entirely soaked in MND.

  Words like ‘future’, ‘hope’, ‘joy’, have vanished from my lexicon.

  Later I’m quite pleased with myself. In spite of my low mood I made a concerted effort to drag myself back from that dark place. I started Arkwright’s piece on my experience with this accursed disease. And having finished his other column last night, I checked it once more by the cold light of day and emailed it to him before I scrapped the lot as an exercise in vanity.

  8 JULY—Curious. It’s only Wednesday, not a weekend, but Joel is up again. He says he just decided to take the day off.

  I wanted to be bright for him; I couldn’t do it.

  He said he wanted to help; his presence helps. But I worry about him getting so involved. He dragged out of me the fact that I’m hating the physical changes. He reckons h
e doesn’t notice them nearly as much as changes in my mental state.

  I told him about Curtis and our big chat, so he knows where we all stand. No point in him worrying unnecessarily about how bad things will get.

  That visit was still sharp in Naomi’s memory. Joel had fallen into the habit of ringing Adam several times a week; a regular therapy of jokes and light-hearted banter. On this occasion, sensing the despair, he’d dropped everything to come in person to rally his brother’s spirits. The potential for suicide was still preying on his mind.

  ‘Don’t get me wrong, Nay, I wouldn’t blame him. How he copes with all this, I just don’t know. But… ending it all… himself… well, it screws me up somewhere inside. To think of him having to do that!’

  ‘Oh, I know! I know. It feels so… selfish, but I feel physically sick walking up the path, putting my key in the door, in case I find him…’ It didn’t bear putting into words.

  ‘I know it’s what he wants and I wish I had the courage to do it for him, but… I’m a wimp. I’m a lily-livered coward. I’m useless. I just couldn’t. I couldn’t.’

  ‘Don’t beat yourself up on that score. Neither could I.’

  ‘We’ll be cowards together, huh?’ The words trembled in spite of his attempt at levity. He turned abruptly and left the room.

  10 JULY—Another letter from a publisher. I like its logo. I chose it for its name: Omega Press.

  ‘I am Alpha and Omega, the beginning and the end, the first and the last.’ Apposite.

  I sat for several minutes not wanting to even slit the envelope open. How much more rejection can I take before I go under? I put it down and waited until I’d had a strong mug of coffee.