I WILL NOT LET MND BROWBEAT ME INTO SUBMISSION.
I AM IN CONTROL HERE.
And tomorrow everything will seem different.
30 JANUARY—Contemplated the pros and cons of ending it all, today. Not easy.
Like I said yesterday, maybe tomorrow will look different.
Nausea washed over her remembering that day.
She’d come home earlier than expected. The silence in the house… the order in his study… it was unnerving. Where was he?
She’d found him standing in the garage with the door closed staring at the car. Her knees had buckled beneath her, and she’d had to lean on the bonnet of the car herself.
‘What… are you… doing?’ she’d managed.
‘Just thinking’ was all he vouchsafed before putting an arm around her shoulders and leading her back into the house.
From that evening she knew a moment of fear every time she opened the front door after a day at work.
12 FEBRUARY—Those different tomorrows didn’t materialise, hence the silence of the past fortnight.
I’ve decided that the quality of the life I have left is as much if not more important than the length of that life. And what do I want as part of that ‘quality’?
I want to be as cheerful as I can be.
I want to be as free from pain and discomfort as possible.
I want to retain my abilities for as long as possible.
I want to contribute usefully to my profession for as long as I can.
I want to maintain my relationship with Naomi, as it is, for as long as I can.
I want to leave her with good memories of me.
If treatment will assist me to realise those aims, then I want to know which treatment, and when.
Okay, Devlin, I’m listening. Actually I’ve taken a tangible, positive step today too. I’ve put photos of Naomi all over the place – not so she can see them and be embarrassed (like she was when I stuck the one of her in bed on my wall), but where I’ll see them and be constantly reminded – reminded that she’ll soon only have memories. Do I want her to remember me as grouchy or morose or defeated? Do I want her to remember me with disappointment or shame, as Mother remembers my dad? Do I heck! Seeing her face when she found me in the garage was enough to convince me of that. It’s down to me to make sure she doesn’t. And this time around is for real, it’s no dummy run, no rehearsal.
So when I’m feeling more robust about all this I’ll get back to Devlin’s papers. For her sake.
It had been a shock finding the photos everywhere – not just in the usual places like his wallet or desk drawer, but tucked inside his sock drawer, threaded into the back of his tie rack, in the pocket of his overnight bag, in folders, books, CD covers. She’d started to find them when he began to need practical assistance. When she’d challenged him he’d grinned at her.
‘Didn’t know I was so sentimental, huh?’
‘You’re not!’ she’d shot back.
‘Well, it just shows how little you know the guy you married.’
It had never occurred to her he was working so hard for her sake back then.
If only… If only…
She looked across at the photograph of him and shook her head.
‘Oh Adam! Why didn’t you tell me all this?’
2 MARCH—Lydia shocked me today.
Now, I’m essentially a private person. My body is my exclusive possession – well, it used to be anyway. I realise there has to be some loosening of the reins of ownership when illness strikes but even so, I see a big difference between taking liberties with my body and exposing my mind. That’s hallowed ground. But Lydia seems to creep inside my head and turn over stones even I don’t look under.
‘You don’t need to struggle on your own, honey.’
‘Struggle? I’m not struggling.’
‘And you don’t need to set yourself impossible goals.’
‘No?’
‘You and me, Mister O, we ain’t in competition. We’re pals. Best mates. Doing the three-legged race. Together.’
I couldn’t help but smile at the picture she conjured up. No doubt about it, she’d steam down the track bearing me along with her effortlessly even if I made no contribution whatever. A dynamo to my brake.
‘I love your analogy, Lydia, but you’ve lost me, I’m afraid. I haven’t a clue what you’re talking about.’
‘I can feel how bad it’s getting. No need to pretend with me.’
Seems Lydia knows exactly how many of my arrows are hitting the outer ring of the target, how many are missing altogether – the mental resolve as well as the physical objectives. Damn her perspicacity. I wanted her to go along with my fiction.
Who else sees behind the façade?
What else had this woman seen that she, his wife, had missed?
7 MARCH—Dr Curtis came today. His receptionist rang to check I was in and available. To tell the truth, even if I hadn’t been, I think I’d have re-jigged things to be here. I’m impressed by what this man is trying to do. GPs I know have a whole host of targets to meet and they get the raw end of things with all the piffling complaints and the griping and the lead-swingers and the hypochondriacs. Seems to me they do a lot of the hard graft but get precious little of the glory. In spite of the demands on his time and energy, Curtis has made it his business to add me to his list of optional extras. Here he is dotting in for a spot of the old TLC outside of his working hours. And I know he’s often in the surgery until 7, 8 at night. If he has a wife and kids, they don’t see a lot of him.
He didn’t even wait till I called him. He thought about me and volunteered to come – just to see how I’m ‘getting on’, as he put it mildly.
He’d heard from Devlin, he said, in a routine letter, that from an MND point of view I was doing quite nicely. He didn’t mention Lydia, but I’m pretty sure she’d have whispered some inside info too, knowing Lydia.
‘How d’you feel you’re doing physically?’
‘Pretty reasonable, I’d say. Nothing spectacular. Just ticking along.’
‘And how are you coping?’ he asked in the same friendly light tone.
‘Fine.’
‘I was just wondering – would you be interested in talking to someone?’
‘As in?’
‘A counsellor?’
‘Why? D’you think I’m losing the plot? And there was I kidding myself I was one of the steel-plated variety!’
‘Oh no! Don’t misunderstand me. You seem to be completely on the ball and handling this really well. But what about what’s underneath? This is a big thing to grapple with. I just want to be sure we’re giving you all the support you need.’
‘Well, I’m totally blown away by all this attention. Dr Devlin’s been really helpful. Sees me himself, too. Lydia is brilliant. And I’m terrifically grateful for your visits. Way beyond what I need or deserve, I’d say. But thanks anyway.’
‘But would it help to let off steam to someone who isn’t part of the actual physical care-giving team?’
‘I don’t think I need that. I can talk to you, can’t I?’
‘Well, yes, of course. That, too. But you could have dedicated time to talk about how you’re feeling to somebody whose job it is to listen. And who isn’t distracted by all the other things.’
‘But you listen. I guess it’d be different if it was just a rushed two minute appointment down at the surgery. I’d be a bit cagey about taking up your time if there were twenty really sick people outside in your waiting room. But with you dropping in like this… I’m sure you have a million other more important things to do tonight but you make me feel like this is important. I appreciate that.’
‘It is important.’
‘I’m sure not all GPs operate like you.’
‘Some of my colleagues are hotter on the technical stuff. Some of them specialise and get right into the research and latest advances and everything. I’m one of the low-key brigade. A stage-hand not a film star! Don’t
have the drive, I guess. As my primary school teacher said in my report, “Hugo is a plodder but he gets there in the end.” I was always rather in the shadow of my older sister, I’m afraid.’
‘Comparisons are odious, to quote a dreadful cliché.’ I grimaced.
‘Indeed. I thought so at the time anyway. Now? Well, I’m comfortable doing what I do and we don’t move in the same circles professionally, so people don’t know I’m the also-ran!’
‘What does your sister do? Is she in medicine too?’
‘No. She’s some big noise in nuclear physics. Part of the international scene. All way beyond me.’
‘But… well, take it from me, you do make a difference. Where it counts. People like me need people like you who have time to care, to share the struggle. Not that I think you’re an also-ran, I hasten to add. I mean you can’t be any intellectual slouch yourself. Seems to me you GPs need just as much skill to know about tons of illnesses as a consultant needs to stay abreast of a tiny bit of medicine. Don’t you?’
‘In a way. But I know my limitations and one thing I do believe in is drafting in experts when we need them. Dr Devlin will keep an eye on your MND and suggest treatments and so on. Lydia will take care of the physio side of things and keep you as mobile as possible. We’ll call in the MND Nurse, the Speech and Language Therapist, as and when you need them. I’ll help with any minor things that might crop up along the way. But a professional listener might just be the ticket for helping you deal with the psychological side of this. That’s all I was thinking.’
‘I have to say, I think you’re under-selling yourself. You’ve been incredibly kind and to be honest, you’ve surprised me. As you know, I haven’t had much experience of illness, so I haven’t dabbled in the NHS before. But you take the time to listen and you understand.’
‘Well, thanks for that,’ he said with an embarrassed air.
‘No, I really mean it. It makes a difference having you folk on my side, I can tell you. You. Lydia. You don’t treat me like just another patient, all in a day’s work. You really seem to care how I feel and go that extra mile.’
‘Lydia’s a one-off! I’m glad you like her. She’s a great person to have on your team.’
‘I count myself very fortunate.’
Long after Curtis had gone I thought about this. It could make a useful reflective feature I think. *(Add to Ideas folder: kindness an optional extra.)
‘Kind’ seems too loose a term for what I’m trying to get at. It’s more a disposition thing – when somebody is disposed to do one good, to be generous in the giving, to be friendly about it, to do it because they care about you and really want to do something for you. It comes from within, stems from inherent qualities of goodness. If it’s genuine anyway.
On the face of it you’d think that anyone wanting to enter the caring professions must be naturally kind, wouldn’t you? But watching the staff in hospital I’m not so sure. One of the doctors I saw when I went for tests (Dr FG Smith-Franklin, Senior Registrar, if his badge was to be believed), well, you wouldn’t mistake him for kind. Technically proficient, probably. Professionally detached, yeah. But I got the distinct impression he’d had kindness trained out of him – if he ever had it in the first place. Would it take up too much valuable time to be kind as well as professional? Would it make him too vulnerable to show his natural emotion? Would it risk him identifying too much with my plight? Would it leave him too empty and drained to be a person outside of his white coat? I might explore this with some of the medics I come across from here on in.
For now though, do I want a counsellor? I told Curtis I’d think about it. A counsellor would set boundaries around her time, around her remit. I don’t want a listening ear at 3PM on a Friday afternoon, I want it when I want it. I need it when I need it. And how long would it take me to feel safe with a professional listener? Especially somebody who doesn’t see what’s really happening to me, who only sees my scrubbed-up self. My hunch is I’d feel more comfortable sharing my thoughts with a trusted friend, somebody who sees for himself what I’m battling with, who shares the bad patches, who sees me as I am, who cares through it all. Who goes on caring, not just for the regulation fifty-five minutes. Someone like Curtis.
And it needn’t take more than five minutes sometimes – just to receive that little touch of kindness in with the prescription. It’s as much an attitude as anything else that I’m looking for.
I don’t want to lay bare the mental, emotional, psychological aspects for scrutiny and dissection. I don’t want someone trying to winkle out that bit more of my inner self. I don’t want to divorce the emotions from the whole beastly thing and offer them naked to somebody who has permission to ignore the context and probe my childhood or my marriage or my fear of dying – or any other stupid red herring the psychobabble lists as a legitimate target for somebody paid by the hour to analyse my chance comments and show me how maladjusted I am to a terminal condition.
No, I think Curtis is exactly the man I need. I really believe I could tell him how bad it is and he’d take it quite calmly and help me through without sending for the straitjackets. He’s already shown he’s a bespoke man, not limited to off-the-peg. He knows there are no-go areas – like PEG tubes and ventilation. I told him loud and clear, I’ll not be here for that bit.
But more importantly, there’s a big question coming up that I need to talk about and I need to know it’s in safe hands when I share it.
Naomi did a double take. Nineteen days without a single entry. After the apparent luxury of a lengthy discourse on kindness it was odd.
26 MARCH—I’ve found another outlet for my tensions, another diversion. Hence the long silence.
It comes in the shape of Hester Ramonides! She’s bounced into my novel and she’s my current preoccupation. She’s helped me through several sleepless nights and I find her irresistible.
Hester has synaesthesia – along with six per cent of the population in the UK, apparently, although I’ve only recently come across it. There’s a joining up of sensations – words with colours, for example. In the normal brain there’s a division; in the synaesthete it’s missing. I’m intrigued. Imagine tasting or smelling music, or feeling the texture of words, or seeing language in technicolour. My character Hester is a fellow patient of Aidan’s, and she sees words and letters in 3-D and colour.
I know you can’t produce these effects artificially and I don’t suppose it’s a joking matter for those people who live with synaesthesia in real life, but in order to get a feel for Hester’s sensations I’ve been practising with my own thoughts. It seems there are several well-known writers who do have this extraordinary perception of words and if I can find one of them I might get them to check the description in my book for authenticity – although no two people experience this curious phenomenon in exactly the same way so that allows me some latitude.
For Hester, MOTOR begins as glossy black, iridescent sparks on the circles with the final letter fading to a blur of pale grey with frills of smoky blue inside the loop of the R. There’s a hint of olive green down one side of the T which fades in and out with the changing light. NEURONE is an all-over oceanic greenish-grey with spiky letters at the beginning but the O and N start to roll out more smoothly and have opalescent halos around them with hints of fuchsia pink and dark turquoise underlining the bottom edge of the letters.
I wanted to make DISEASE spectral white with a bilious yellow shadowing each letter, but I realise that’s too stereotypical. Instead it’s horizontally banded with the colour and bloom of black grapes at the top going through a spiteful mustard to a sort of murky pink with little bumps like the suction pads of a non-slip bathmat here and there anchoring it to the line. And there are waving navy-blue tentacles coming out of the last E.
Like I say, I’m having great fun with Hester Ramonides!
28 MARCH—Lydia should have become a spin doctor. She’s a natural!
‘Why Mister O, this is a golden opportunity you are m
issing!’ she said with one of her throaty laughs, manhandling my legs in her powerful black hands, Caribbean drums thrumming through her vowels.
‘Oh?’
‘Well, you are getting tired, yes?’
‘With you putting my poor old body through the mill, is it any wonder?’ I retorted. ‘Ever thought of becoming an interrogator of spies? You wouldn’t need training for the torture techniques!’
‘Not now, I don’t mean. I mean tired day by day, after just normal, everyday lolloping through life. Yes?’ Somehow she didn’t miss a beat with her exercises in spite of her tongue running off at a tangent.
‘Oh, I see. Well yes, I get tired.’
‘And what should you do when you get tired, huh?’
‘Sleep?’
‘Yeeeeeees. And?’
‘Rest?’
‘Sure thing, honey! Lots of luuuuvvaly rest. In bed.’ She threw me a broad grin and a wink.
‘So?’
‘Sakes alive! And you a writer and all! Big imagination. Not like us lesser mortals.’
I stared at her feeling somehow mentally deficient but seeing no clues.
‘Well, you sure are not the most compliant of my customers when it comes to taking things easy. That I must say.’
‘Sorry.’
‘Sorry is not the point. What you need is incentive, honey. Innnn-ceeen-tive.’
‘And the incentive you’re offering is?’
‘I am not offering! No, sirree! A person can get struck off in my business for propositioning a customer. No. It’s the little lady who will do the offering.’
Enlightenment hit me at last.
‘Lydia! I’m not at all sure that you wouldn’t already be struck off for exceeding your brief!’
‘It is not exceeding my brief to get you to relax more, Mister O. Only you have not been listening to my pearls of wisdom up till now. You and me, we got to find some way to make you ease up. And I am just thinking sidey-ways. You need rest. You need bed. But you do seem allergic to bed. So! We need to find a way to make bed more exciting. Pop the little lady in it. You get my drift?’
Right to Die Page 11
