She’d lashed out. And his silence thereafter had served merely to fuel her wrath. How could he?
Oh, it was all too cruel.
If she’d only told him then…
If only…
20 APRIL—This time last year I was living life in the fast lane. Now I’m going to bed by midnight, I’ve turned down two assignments abroad, I’ve talked to Arkwright about more local work to reduce the travelling. I’m working from home as much as possible to maximise productivity. All to conserve my energy. How old does that sound!
I’ve given up golf with Fred altogether.
And on top of all my personal problems, I’m worried about Naomi. She’s had a bad dose of D & V this week. Says it’s an occupational hazard, working with kids. I know she’s always had a delicate digestive system, but she seems really peaky with it. Probably run down already from the hours she puts in, on top of the anxiety about me. Worrying about her affects me, so it’s a vicious circle.
We probably need a holiday.
The thrice-blessed Lydia keeps checking. I respect her judgment and I value her support, so I do take her advice seriously – much as I kid her on that she’s simply a pugilist who lost her way. She’s so much more than an exercise guru. She’s a fount of wisdom with this wonderful knack of never drawing attention to her own role in these insights, she just drops the idea and leaves you to think about it, almost as if it just suddenly came into your head.
It was through talking to her that I realised that I’ve been more frustrated than depressed. Frustrated by the need to curb my activities. Frustrated by the uncertainty: will I be able to get from A to B, or carry something, or fulfil an engagement. Not knowing if or when. Hanging back from commitment in case my fears are realised. For some reason I haven’t quite fathomed, frustration is an easier enemy than depression. (Probably something to do with my dad.)
Lydia’s helping me set staged goals, focus on my present abilities rather than future inabilities. And all that with her gentle brand of teasing that takes the sting out of advice.
I’ve still to ask her if she minds being immortalised in my magnum opus.
‘Now, Mister O,’ she said today, as she stood ready to catch me while I put various parts of my anatomy through extraordinary contortions under her tutelage, ‘this here beautiful body is giving me a glow of pure delight. All this resting and loving and respect for its needs is exactly what it was craving.’
‘Careful, Lydia, praise to the face is open disgrace, you know.’
‘Praise, honey? Who said anything about praise? I’m just sharing with you my own emotion watching that wheelchair going backwards into the future.’
‘Thanks largely to you and your magic touch.’
‘Well now, speaking of touch, I was wondering – just wondering mind, nothing more – how you might fancy a different kind of touch. Maybe not right now. Maybe something to think about for later on.’
‘Mmhhhmm?’
‘Well, there’s a whole lot of other things outside conventional medicine, that they do say as help.’
‘Witch doctors and black magic and things that go bump in the night, you mean?’
‘Well, honey, whatever turns you on. Whatever turns you on. Just a bit farther back… goooood, goooood, perfect. Now let the muscles relax slowly, slowly, slowly. Beautiful. Okay, okay, just you lie there and think of England while you catch your breath. No, I was thinking more along the lines of complementary medicine.’
‘You mean acupuncture, aromatherapy, reflexology, that kind of thing?’
‘Exactly so. Can you see yourself lying back inhaling essence of magnolia and tea-tree fumes? Having pins stuck in your ear lobes? Yeeees. Mind you, honey, I have my own personal reservation about a skinny blonde massaging these luuuuuvvaly legs I’ve been admiring all these months.’
‘Ahhhh, have no fear, Lydia, no skinny blonde could ever compete with your charms.’
‘We have to think of the feelings of the little lady back at home.’
‘And don’t you think she’s jealous of you, then?’
‘Me? Oh, I’m on her side. Just you make sure she know that, Mister O. I’m just here making sure this beautiful body is in as best a shape as I can for her delight.’
‘I’ll tell her that.’
‘You do that, honey.’
‘Complementary medicine isn’t something I’ve considered, I have to say, although now I come to think of it, an hour or so in the lotus position might be just the thing to clear the brain and free it up for fresh ideas. As well as give the office something to talk about.’
Lydia’s eyes disappeared inside the wrinkles of her smile.
‘Sure thing! I read somewhere that yoga was found to reduce fatigue in patients with multiple sclerosis.’ She’d lapsed back into her normal professional voice.
‘Seriously? So does it follow it’s beneficial for MND too?’
‘Well, I haven’t seen any studies on it – not for MND, I mean. It was just an idea.’
‘But would you personally recommend becoming a pin-cushion with my lungs full of bitter aloe, and a nubile pagan priestess sending exciting messages to unexpected places through the soles of my feet?’
‘Recommend? No, actually I wouldn’t put it that strongly. But it’s something you might like to ponder.’
‘Have you ever tried it yourself?’
‘I did once have my hands massaged. Oh, and my head and neck.’
‘And?’
‘I think I must be too thick-skinned. It didn’t do a lot for me.’
‘Too sceptical maybe?’
‘Possibly.’ She grinned at me.
‘And the needles?’
She shuddered theatrically. ‘Too chicken by half, me!’
‘Not much of an advert, are you?’
‘None whatever. And of course, it’s entirely up to you. But if you are interested I could get you some literature.’
‘Thanks, Lydia. I’ll keep it in mind.’
‘Right then, enough of this slacking. Back to business.’
22 APRIL—I could have done without this. On the very evening before I go to see Devlin for my four-months check! I want him to see what good shape I’m in, encourage him to revise his predictions. What I did not want was to be frazzled by someone else’s anxiety.
I guess illness – and the fear of it – can bring out the worst as well as the best in people.
It must be four months at least since I even heard from my cousin, Milly. She lives on the Isle of Man and we’ve little in common except our maternal relations: her mother is my mother’s sister. The two sisters stay in touch by phone and send things at Christmas and on birthdays, but I maintain only a token link with both my aunt and Milly. We don’t even write that extra message in the Christmas cards. My mother keeps them up to speed with family news and I’m certain that neither of them has even sent me a card since hearing about my MND. So getting Milly’s phone call caught me off guard.
No point in trying to record the actual conversation. I was, and still am, so gob-smacked by her insensitivity I’d probably distort it wholesale anyway. But it went roughly along these lines:
Milly: Her mother had told her I was seeing the consultant neurologist this week, could I get him to check again to see if my MND was the kind that runs in families.
Me: (mildly) They’ve already checked that. It isn’t.
Milly: Well, just to be sure, could I get him to do the test again.
Me: Why?
Milly: She needed to know. For her own peace of mind.
Her peace of mind!
Me: And why the sudden interest? (I suspect my sarcasm showed, but stuff that, why should I care?)
Milly: She was sure she had it too.
Me: (instantly contrite – and my mind now in overdrive) Oh no! Tell me about it.
Milly: Lots of almost incoherent thoughts about how scared she was, how awful it would be, what would her children do, etc. etc.
Me: Lots of soothing n
oises but trying to coax her past the ‘too scared to say’ stage.
Milly: She’d been getting bad cramps, lately. Waking in the night with them. Having to get up and stand on the cold tiles in the downstairs loo.
Me: And?
Milly: (wailing) Last night in the middle of this trek to the tiles she’d stubbed her toe on the step into the loo and was convinced that was the first sign of loss of sensation. She just knew she had MND. (More wailing and gnashing of teeth.)
Me: (working to keep my voice even) Had she seen her own GP?
Milly: She was too afraid to have it confirmed. But if my consultant said yes, it was the inherited kind, she’d have to go then. She owed it to her children. (Lots of wailing about their bleak and hopeless futures.)
Me: I’d check, but if Devlin assured me there was no mistake then she’d just have to accept it.
Milly: She just knew he’d got it wrong. She just knew it.
In the whole of this exchange there had been no smidgeon of sensitivity to my reality, only her surmise. I said all sorts of reassuring things – falsely reassuring coming from my position of ignorance, of course, but it seemed like the right thing to do in the circumstances. By the time I put the phone down I felt shattered.
‘And thanks for asking, I’m fine – or I was until you rang!’ I spat out at the innocent handset.
I inwardly cursed my mother for passing on information to these self-centred people with whom I share ancestry but precious little else. Did they ever express any sympathy for my ‘bleak and hopeless future’, I wondered?
This was one experience Adam had shared. It had been a good feeling, being the one to absorb his anger and contempt, to stand proxy for all those who let him down. To be his safety vent, feel his trust.
23 APRIL—Wow! Devlin was a positive vision in yellow today. Now, I’m not a yellow man myself, but I must admit he has this colour co-ordination thing down to a fine art. The exact shade of shirt-lemon was echoed in his bow tie, his handkerchief and… yep, in his socks!
I sneaked a look when he crossed his legs. He had little bees up the outer edges of his otherwise black ankles that matched perfectly. I wouldn’t be at all surprised if his underpants weren’t chosen to complete the ensemble!
But there was nothing in the least waspish about his response to my – or rather Milly’s – impertinence.
‘It’s a natural reaction,’ he said, without rancour. ‘Relatives do wonder, will it be me next? I can’t, of course, say categorically, not having seen the lady in question, although it sounds unlikely from what you’ve told me. But she’s nothing to lose by going along to see her own doctor. If he knows there’s ALS in the family, it might make him view her symptoms with some sympathy.’
So even he suspected hysteria. And he hadn’t heard Milly!
But I had other fish to fry.
‘Can you tell me more about the inherited aspect? Am I right in thinking that it’s down to a faulty gene?’
‘Well, as you know, only a small minority of cases are familial to start with. There are at least half-a-dozen, if not a dozen, different genetic variations of the disease, but a mutation of one specific gene has been associated with a small proportion. So this particular anomaly accounts for no more than two per cent of all cases of MND. That’s a very small number. Tiny, in fact.’
I looked at him with some respect. Being able to trot out figures when he didn’t know the question was coming is impressive. Me, I’m a words man. Numbers just don’t stick. I have difficulty even remembering my car registration number. The unworthy thought popped into my mind that he might be making the entire thing up. I wouldn’t know.
‘When this discovery was made in 1993 it was hailed as a breakthrough, because at last scientists had identified a cause of MND. However, their optimism was rather deflated when they found something like ninety or a hundred different mutations of this gene around the world – they’re still finding new ones – and all these mutations had resulted in MND.’
‘So if someone has the non-familial kind, is it possible that their genes might mutate and they could pass on a faulty gene?’
‘I have to admit that’s not something I’ve ever really thought about. I suppose it’s technically possible, since we don’t know what causes the gene to mutate. But I don’t think we have any evidence of it and I should think the statistical probability is billions to one.’
So if you ignore Sod’s Law that’s not something I need to worry about for my children… always supposing…
‘In point of fact, a lot of people waste a lot of precious time worrying about things that’ll never happen,’ Devlin was saying. ‘Inheritance is always something of a lottery. And any of us could develop a whole raft of illnesses or die from accidents or infection, even if our parents give us the full complement of healthy genes.’
He actually smiled as he said it although I can’t be a hundred per cent sure he was looking at me as he did so.
I quit while I was ahead and didn’t ask him any more questions. He professed himself well pleased with my ‘progress’. What does progress mean in this context? I decided not to spoil the moment by probing that one.
We parted on mutually satisfied terms, for ‘another four months’. Then, just as I was about to leave the room, he suddenly asked, ‘Mr O’Neill, I was wondering if you would consider being a patient for the next round of clinicals here. I know you’re a very busy man but your case is interesting and I think would be a good one for the students.’
‘How much time would it involve?’ I had to be cautious. Harry wouldn’t give a toss if life was interesting for already privileged medical wannabes.
‘As long as you can free up. We’d arrange things around your commitments. If you feel you could give us a little time.’
‘Can I think about it and get back to you?’
‘By all means. Just ring my secretary if you feel it’s something you might be able to fit in. And don’t worry, if you can’t manage it – for any reason. You’re under no obligation.’
I was, but I knew what he meant and I appreciated the sentiment. He’d still give me the VIP treatment.
30 APRIL—In spite of her protestations to the contrary I don’t think Naomi’s properly recovered from that D & V bug yet. She felt too nauseous to have breakfast this morning but assured me she tucked in once she got to the office. Admittedly she did finish the salad I made for dinner – a change from picking at things. She’s skinny enough without skipping meals.
Devlin’s secretary was gushingly grateful when I rang to say add my name to the list of patients willing to expose their anatomies to inexpert fumblings. I felt as if I’d bequeathed my body to medical science. Now there’s a possibility I haven’t considered. Should I? Save Naomi the expense and trauma of a funeral. Could I – or she – cope with the knowledge that my shell in all its nakedness and deformity will be/is being gawped at and mauled by pimply youths and brainy young women?
Adam had never mentioned this possibility so she hadn’t even had to think about it. Naomi leaned back in his chair staring at his words. Would it have been acceptable to her? The response was instant and visceral: No! Irrational though it might be, she needed to know he was at peace, his body beyond further humiliation, the secrets of his tissues safe from further revelations.
Her eyes went to the photograph. That unclouded smile made her heart lurch. Hopes and dreams intact. Unaware of the impending destruction. Strange to think that if he’d been killed suddenly about that time then they would never have known of the defect he carried – that hideous stalker that had become bolder with the passing weeks, cruelly robbing him of so much he held dear.
No, nature had wrought havoc enough in his life. He deserved to be unmolested after death.
1 MAY—It was probably knowing about my hospital appointment that prompted Curtis to come calling today. This time he said he was doing a house call nearby and had just dropped by on the off-chance, and since it was 11 in the morning, it was inde
ed an off-chance.
Perfect timing. I was at home working on a big feature, avoiding interruptions. Naomi was away, visiting one of her adoptive families. The birth mother had asked to see the boy she’d given up and all parties needed Naomi there to make sure everybody stuck to the rules, so I knew she wouldn’t suddenly appear. Ideally I’d have liked enough warning to prepare my questions but otherwise Curtis was a welcome distraction.
The good doctor was in his shirt-sleeves with his tweed jacket slung by one finger over his shoulder, looking more like a country squire than usual. I used the opportunity to suggest coffee in the garden and he slumped onto the wooden bench with a sigh. I could see him leaning back with his eyes closed while I brewed up, looking older in repose than when animated in conversation.
‘This is more like it. Your garden’s looking glorious.’
‘Thanks to Naomi. She’s the green-fingered one in the family. And the inspiration. I just do as I’m told.’
He inhaled expansively.
‘Mmmm. Those azaleas smell fantastic. I only wish my patch looked half as good.’
‘I can’t imagine gardening figures very high on your agenda.’
‘It ought to but, sad to say, it doesn’t,’ he admitted with a rueful half-smile.
We roamed casually over hobbies and energy levels and onto mine in particular. Then I plunged.
‘Can I ask you something a bit off the wall?’
‘By all means.’
‘In confidence?’
‘Of course.’
‘I realise I’ve been lucky so far, still getting about and doing most things in spite of the increasing weakness. But I know it can’t last and I’ve been giving some thought to decisions for later.’
‘Uhhuh.’
‘First off, I don’t want anyone else getting into hot water because of me, okay?’
‘Okay.’ He was guarded.
‘I know about Diane Pretty and Annie Lindsell and Reginald Crew and all those cases, and I know the family or the doctor can be left with a mess on their hands. I definitely don’t want that.’
Right to Die Page 13
