Joel was her lifeline. With him she could be honest and acknowledge the changes without feeling disloyal. He’d tried to cheer her with his light banter: ‘Good thing to know the old boy’s still sparky enough to feel jealous!’
But there’d been nothing good about Adam’s slow loss of contact with everything he’d held dear. As his own world shrank, it was one thing she could do for him; protect him from her work problems, spare him the reminders that the world went on out there, heedless of his private battle; the knowledge that there were other real families in trouble, sometimes even of their own making, and that she was part of the solution.
No. She’d been right to use other shoulders to cry on.
25 AUGUST—It was an exhausting weekend. Joel’s energy is hard to take now. But Naomi needs him, I see that. And I dare say he needs to see me for himself.
As for me, I spent the whole time dreading that moment of parting – again. As soon as he’d gone I went to bed, too worn out even to cry. It was my worst night so far; difficult even to breathe. Brendan stayed in the easy chair beside my bed from 1 o’clock on. I tried between breaths to find out what he thinks. He values all life. Quality of life doesn’t matter. Contribution to society (or lack of it) doesn’t matter. Drain on resources doesn’t matter. I tried to tell him it matters to me.
Today he took me out in the wheelchair. ‘Fresh air might help.’ The wind was spiteful. Nevertheless, we did a circuit of the area. ‘In the teeth of the wind’ felt literal. Maybe it’s just my lack of adipose tissue. Brendan was in short sleeves.
A young woman jogged past us. ‘Money over Morals’ her T-shirt proclaimed. I’d need to think about that.
Naomi pushed back her chair and left the room without even stopping to switch off the computer. The abbreviated entries as well as the staccato sentences were so eloquent.
Every time now Joel faced an agonising decision – to stay or to leave. Every night she tossed and turned herself, listening to the sounds of Adam’s battle, fighting the impulse to go in and take over from this stranger, this paid helper. But Adam had insisted. She couldn’t deny him what little control he retained.
It still hurt. She still wanted to be the one he needed.
27 AUGUST—I’m screaming on the inside. I’ve descended into a does-he-take-sugar world. I am not a moron. I have two degrees. I have lost count of the things I’ve had published. I am – or at least I was until recently – a wordsmith par excellence. It is an insult, an offence to slowly over-pronounce your puny vocabulary, to offer me closed sentences.
I do not want to be coaxed into accepting an alphabet board or a Dalek-like pre-programmed voice.
I do not want this grotesque parody of life.
I do not.
Later Well, I may be past the stage of changing the path I’m on, but I can at least select the company I keep along that way.
In no particular order…
1. Arkwright. He’s brilliant at working on my text with me; reckons in places I’ve assumed too much knowledge of MND. Not surprising. My whole world is written in its language these days; I can’t think myself back into a position of ignorance.
2. Lydia. Her monologues are wonderfully soothing and vibrant with pictures. And even in her British guise, I still love to see her eyes vanish inside her bass chuckles, and feel her massive ebony fingers ironing the wrinkles out of my muscles.
3. Brendan. He’s been gradually but not unwillingly re-shaped in my image. And he’s admirably receptive to suggestions and advice on how to improve my care.
4. Curtis… I don’t know. He’s playing a waiting game. But I think when the moment arrives he’ll come through for me.
5. Ernest Kane. There are things I want to hear from him.
I can relax with all of them, just be myself. Surely a man in my advanced state of decrepitude ought to be allowed to choose his companions without the burden of other people’s sensitivities weighing with him. Or is this as utterly selfish as my embryonic plan for my own end?
1 SEPTEMBER—All visitors are exhausting – even the most welcome.
Chloe suggests adapting the phone so that I can stay in touch with people – hands-free. But she has no magic bullet to fire the neurones that used to activate my speech and breathing. The phone would be one hundred per cent frustration.
Inside my head my diction is perfectly clear. I can see from the faces around me that once the sounds escape into the outside world, they develop impediments and shyness and fall over themselves in their haste to hide.
Joel’s fantastic at understanding me. Of course, he can trade on a lifetime of practice; he’s known me longer than anyone else I know. But he can’t be here all the time. I hate to think Paige scarpered because of me. He said not, but I’m not sure if that’s the truth; he didn’t elaborate.
Understanding me is part of Brendan’s job, of course, but I hate it when he translates for other people. He doesn’t stand in that relationship to me. It’s not his right, even though I know his motives are good. I’ve told him, but it’s instinctive with him; I need help, he supplies it.
The purge of redundant visitors began today. I said my last goodbye to Jerry. I can’t handle his unease with my situation. My disintegration hangs between us. Now I can no longer fill the breaches, the silences are not the kind friends can tolerate. Perhaps I make him face his own mortality.
2 SEPTEMBER—My first major outing for weeks. Devlin day. Naomi took the day off to accompany me, but Brendan drove and he pushed my chair.
Once I was safely in the consulting room, they both withdrew.
It was a blue day in Devlin’s wardrobe. Sky blue. So bright even when I closed my eyes during his examination, the sheer vibrance of it stayed imprinted on my retinas.
I told him about my lack of concentration.
‘Is it… the start of… dementia?’
(I’ve been resisting the impulse to record my speech with all the rasping breaths, but it seems relevant here.)
‘I presume you’ve read that somewhere. In the region of three to ten per cent of people with ALS develop dementia,’ he said calmly. ‘From what I’ve seen, you’re not in that percentage.’
‘Yet!’
He smiled. His asymmetry is somehow less daunting warmed by humour. And that brilliant blue.
‘If I exhibited… socially unacceptable… behaviour… would you… knock… me out… with some… thing?’ I wheezed.
‘It would depend.’
‘On?’
‘How antisocial that behaviour was.’
I tried to shrug my shoulders.
‘Difficult to fake,’ he said wryly.
Nothing for it but to take him down a different track then.
‘I have… a DN…R… order.’
‘I see that.’
‘It’s… futile… to per… sist… with this.’
He nodded with pursed lips for a long moment.
‘Is there anything you’re looking forward to in the next few weeks?’ The question took me unawares. I took my time thinking.
‘Sorry?’ I was completely mystified.
‘Any big event? Anything that you really do want to see or experience? A wedding perhaps? A book coming out? An anniversary? Something like that.’
‘Not… in… my life… time.’
I raised my eyebrows. I still couldn’t see where he was coming from.
‘Futility. It’s a strange concept,’ he said quietly. ‘Sometimes even a couple of extra days can be of supreme value to a person who is otherwise set on dying.’
‘Mending… fences?… Seeing a… relative?’
‘That sort of thing.’
‘Nothing left… in… my… case.’
‘No unfinished business.’ It was a statement. ‘Fair enough.’ Then he suddenly lifted his head and said quite briskly, ‘I’ll just call your wife in.’
He was kind but honest. It was just a question of keeping me comfortable, dealing with the symptoms as they presented. Nothing heroic
; he promised that. He was satisfied that Dr Curtis had things well in control.
There was no mention of a next appointment.
Naomi recalled that day with perfect clarity. Dr Devlin radiated authority. She felt compelled to listen to the words she did not want to hear articulated. The deterioration was gathering pace now.
Even with all his experience as a neurologist, he could offer no promises – about how long, about how bad things would get, about a solution. Only that Adam could be admitted to hospital if they felt unable to continue caring for him at home.
Adam’s powerlessness – intolerable didn’t come near it.
Joel too railed against the cruelty when she reported back to him that night, and together they inched closer to Adam’s abyss, his answer.
She’d clung to him across the miles, not wanting to be alone with her thoughts.
7 SEPTEMBER—It’s uncanny. Just when I’ve declared I have nothing left to live for, I get a letter from Anthony Frobisher (Editorial Director, Omega Press). He liked the ‘unusual angle’ of Aidan’s Story (but not its title!). ‘Some editing’ will be necessary. But they’re prepared to negotiate a contract… if I’m interested. If… ? I have to keep going for long enough to sign that piece of paper. Yes, Devlin, you’re right. Even a couple of days can be of supreme value. Today I understand that.
I shan’t see it in covers, of course. No publisher works that fast and these guys don’t even know I’m dying. But Naomi and Curtis have agreed to nurse it through the birthing process. I just need to ensure that my little embryo is safely embedded in Omega’s womb. And I like to think even a hard-nosed editor will respect a freshly dug grave and go lightly with the red pen.
So, how far to go?
Okay, Doc Curtis, I’ll accept I could do with more help – just to keep me functioning until that contract’s signed. I confess I’m knackered just taking in enough oxygen. Now that my intercostals and diaphragm are throwing teenage tantrums, I have to use the muscles in my neck and shoulders to breathe, which means I ache everywhere. And coughing’s a killer, inasmuch as it’s exhausting, not in the sense of finishing me off, more’s the pity.
So yes, I’m ready to accept painkillers now, thank you. As strong as you like. The time for keeping a clear head is past. It was so bad last night that I got Brendan to fetch Mother’s Coproxamol from my desk drawer. Two can’t hurt, I coaxed. I couldn’t wait. I needed it now. I sent him out of the room so he could say, hand on heart, he had no part in the unorthodox action. There were no watching eyes – well, only my mother’s ghost! – but I limited myself to just two.
Night-time is worst. It seems my shallow breathing is partly responsible for my disturbed sleep. The effort, the nightmares, the sweats and panic attacks, mean I wake up completely done in, ‘hung-over’ and headachy. So Doc, if you’re offering…
A koala would be in paradise in my room right now! Brendan swears by eucalyptus oil, to ease breathing – it’s on my pillow, tucked into my shirt collar, on my hanky. I’ve no idea whether or not it’s helping me, but it’s helping Brendan, and I need him on-side – especially in crises. It’s illogical to panic, I know, but it’s outside my control. Breathing is such a fundamental, instinctive need.
Curtis asked me about assisted ventilation last week. I didn’t need to think.
‘No! We agreed. No heroics.’
‘It needn’t be invasive… just a mask, to provide extra air as you breathe… perhaps just at night?’
I held out.
Now… since Omega’s letter… should I reconsider? Just until the contract’s in the bag. But there again… the longer I extend my life, the worse the other disabilities become. I’m in a sort of limbo. Medical technology offers me an illusion of choice.
Ernest Kane is coming on Wednesday. He’s the chap I need. Three days to go.
10 SEPTEMBER—Ernest Kane came. Early. I feel a sense of peace. I have his unspoken blessing. I think.
‘His grace is sufficient.’
Brendan understood too. And agreed.
I’m ready. Only one thing left: the contract.
Joel’s coming up again this weekend. He’s the one who unnerves me most.
I will be strong. I will.
Naomi held her breath.
15 SEPTEMBER—Omega’s publishing contract arrived. Scrawled something. Joel posted it straight away.
That’s it.
Jigsaw finished.
Naomi stared at the last entry. Then she backtracked five pages and read it all again, more slowly.
The cues were there.
But even knowing what she knew, suspecting what she suspected, there was nothing to incriminate, nothing to use in evidence.
***
That afternoon Adam had asked her to call Dr Curtis. His breathing was shallow and with every breath his shoulders heaved.
‘D’you need some oxygen?’
‘No… I’m… exhausted… I just need… something… make me… sleep.’
Dr Curtis looked concerned when he eventually emerged from Adam’s room.
‘He’s struggling. I’ve given him something now to ease his breathing. And I’ve left him some night sedation. It should help. I’ve told Brendan, give it to him just before he settles for the night. There’s a second dose if he needs it in the middle of the night. He’s just exhausted – the effort of breathing, the lack of sleep. It should be enough to help him get over. I’ll pop in again tomorrow. We might need to think again about assisted ventilation.’
Naomi had sucked in her breath sharply at that. He smiled ruefully.
‘Oh, don’t worry! I didn’t mention it to Adam. Let’s see what a good night’s sleep does.’
‘He was adamant. No ventilation.’
‘I know. But circumstances sometimes alter cases. Goodness, how he’d slate me for such a hackneyed statement.’
The smile faded before it even took shape. He moved closer.
‘What about you, Naomi? You look all in yourself.’
‘I’ll be all right. Especially if you can give Adam a better night.’
‘I can give you something, if you like?’
She shook her head. She was tired enough to sleep. If only Adam did.
‘Joel’s here. He’s staying on. Thanks for coming.’
‘No problem. Don’t hesitate to call me if you need me.’
She peeped around the edge of Adam’s door without making a sound.
He half smiled.
‘Can I get you anything?’
‘Couple of… tablets. Headache.’ His eyes closed as he said it, a frown creasing his forehead.
She tipped them out onto his hand.
‘Another… one… It’s thumping.’ But he hadn’t taken them immediately. ‘In… a minute… on… my own… Don’t… want to… choke.’
She moved the beaker closer, turning the straw towards him, dropped a kiss on his forehead, noting the damp heat of exhaustion, and left as quietly as she’d entered. They tiptoed around his room whenever anything needed to be done but most of the time he lay with his eyes shut, not moving, his breathing steadied for the time being.
Joel elected to sit with Adam for the evening while Brendan got some sleep in case it was another difficult night, but for most of the time, with nothing to do but read, in the gathering gloom of evening he found himself nodding off.
An early night appealed to everyone.
It was Brendan who roused her.
8.15. What…?
‘I think he’s unconscious,’ he whispered.
Adam was certainly unrousable.
‘When did you…?’
‘I checked at 6 – when I woke myself. I thought he was just sleeping. I didn’t want to disturb him.’
‘Could it just be… Dr Curtis’s medicine?’
‘It’s possible. Presumably Joel gave him the second dose some time last night.’
Joel!
He woke with a start.
‘No. I didn’t get up last night. I thoug
ht you were doing the night shift, Brendan.’
‘Yes. But he didn’t ring for me.’
They all stared at the row of empty medicine glasses.
‘He asked me for another dose of his painkillers with his night-time drink,’ Brendan said slowly. ‘I gave him two. He asked for another one.’
‘He had three after Dr Curtis left too,’ Naomi whispered. ‘Said he had a thumping head.’
‘I left two more in case he needed more in the night,’ Brendan spoke slowly, a watchful look on his face. ‘He asked me to.’
‘And they aren’t there now?’
He shook his head.
‘That makes eight, plus Curtis’s stuff times two,’ Joel said, staring down at his brother.
‘On top of whatever the doctor gave him for his breathing,’ Naomi added.
Joel suddenly opened the drawer of the bedside cabinet. His breath seemed suspended.
‘What were those tablets in the drawer?’
‘Your mother’s Coproxamol.’
‘He asked me to press tablets into those coffee creams Sally brought him – said they were more palatable that way.’ Joel’s voice sounded tight.
Two pairs of eyes gimletted into him, waiting.
‘He said I might as well make myself useful, not sit there just nodding off. They’d be ready when he needed them. I did them all. Like he said. All six of them.’
‘Six more tablets – Coproxamol.’ Brendan tallied them up.
‘No, twelve. Two tablets in each.’
‘And have they… all gone?’ Naomi hardly dared voice the question.
Joel checked the dish where he’d laid the chocolates, and nodded.
‘And the rest of the tablets – where are they?’
The question hung suspended in the air as they stared at each other.
‘Well, he won’t have eaten the container! They must be somewhere.’
Their eyes scanned the vicinity, nobody daring to move.
It was Brendan who turned back the sheet, he who took the bottle from Adam’s hand and placed it back in the drawer. In silence. Without even the rattle of pills against the glass.
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