by Louise Voss
‘It’s OK,’ Ed said. ‘We’ve all got to go some time, right? And at least this way I won’t know anything about it. It’s Lynn and Ben I feel sorry for.’
His eyes filled and then all four of us were crying.
‘Are they sure?’ asked April, who had gone very white.
‘As sure as they can be without doing scans. He won’t have the scans because of his claustrophobia.’
‘He?’ Ed interrupted, trying to smile. ‘Who’s “he”? The, er, dog’s dinner?’
‘Cat’s mother,’ Mike said.
Ed glossed over his mistake. ‘Oh, come on, everyone. It’s not the end of the world. I’m sure they’ll find a cure in a few minutes anyway. No. A few … oh fuck it, what do I mean?’
‘Years,’ said April, dabbing the corners of her eyes with a tissue. ‘I did wonder why you kept doing that. Missing words, and so on.’
I paused. ‘Listen. We don’t know what’s going to happen. It might develop really slowly and we’ll have loads more good years. Ed’s dad lived it with for about five years until he had to go into a home. We’ve just all got to stay positive.’ The words sounded hollow even as they left my mouth. ‘Can we go? We’ll miss the sunset otherwise.’
‘Yes, sure.’ Mike jumped up and untied the moorings, clearly glad of something to do. He still had a strange dazed look on his face as he pushed the boat away from the quay and leaped back on board.
April started the engine and took the helm as Fringilla chugged upstream, the evening sun fracturing into a million pieces on the water as our passage disturbed its calm reflection.
It was a far more sombre evening than our boat trips usually were, and I wondered if perhaps we should have waited until the end of the night to tell them. But I couldn’t imagine breaking it to them when we’d been laughing and joking and getting pissed. It was better this way.
After we had eaten, Mike navigated us back downriver towards the lock. It was pitch dark by then.
The first bang came as we were nearly back. ‘Oh look, fireworks!’ April called. ‘Someone must be having a party.’
A huge burst of golden rain showered down almost on top of us, reflecting in the water when Mike cut the engine so we could watch.
‘Look, Ed.’ I nudged him, but he didn’t move. He was staring away from the display, out into the darkness. Fireworks continued to explode out of the clear black sky all around in a riot of noise and colour, but Ed remained stubbornly facing the other direction.
It didn’t matter. So what if he didn’t want to watch the fireworks?
I realised for the first time how much of this whole dementia experience would be dictated by my own reactions and behaviour. I had to pull myself together and stop imagining that strangers were creeping round the house, for a start. It just wasn’t helpful. As long as I carried on as normal, then things would remain normal. Wouldn’t they?
I supposed it just came down to what my definition of normal actually was – particularly in the case of our marriage.
8
Things calmed down a bit in the couple of weeks after the madness of the naked-deckchair-sitting and Ed taking a swing at me in the shower. I convinced myself that I must have imagined the noises in the house that night, the day of Ed’s diagnosis.
Even when I suggested it, Ed continued to insist that I didn’t quit my job – which was a relief, as I’d have hated to admit defeat, just yet anyway; and Suzan confirmed that he was either with her during the day, or, whenever she checked on him, watching TV at home or pottering around in the garden. I still worried about him falling in the river or wandering off, but I accepted that I couldn’t keep an eye on him twenty-four seven.
I asked Suzan if Ed had been with her that time I heard someone sounding like him on the radio, on my first day at work, and she looked at me like I’d lost the plot.
‘Are you serious? Lynn, I can’t remember what time he went home that day – not till about threeish I think – but even if it was earlier, I really don’t think he’s capable of taking part in a radio phone-in, do you?’
She was right. The man on the radio had been lucid and informed – there was no way it could have been Ed. He just wasn’t capable of that kind of intellectual debate any longer, and it was so hard to accept. I knew it was just wishful thinking on my part.
He hadn’t even been able to give me more details about this clinical trial, so I decided to do some investigating – when I was at work, though, with no danger of him overhearing and accusing me of interfering. The sooner he started on the trial, the sooner there was a chance of halting the damage.
It was a beautiful October Monday, sunny, but with a chill bite to the air heralding the changing season. I went and sat on the stone step of the terrace at the back of Fairhurst, glancing behind me up at the house to make sure there were no open windows for my voice to drift through and be overheard. The wintry sun warmed my face as I dialled Mountain Way’s number and got through to Deshmukh’s secretary.
‘I’m sorry,’ she said, in a singsongy voice that slightly set my teeth on edge. ‘Mr Deshmukh’s in with someone at the moment.’
‘I wonder if you can help me?’ I asked. ‘My husband, Ed Naismith, is a patient of his, and he was telling me that a colleague of his, Mr Deshmukh’s, I mean, rang him up and invited him to participate in some kind of secret clinical trial. Because of my husband’s condition – he’s recently been diagnosed with Pick’s Disease – he couldn’t remember any more details, so I thought I’d try and find out myself. I’d want to know what sort of drugs they were planning to give him, how long for, what it involves, who’s running it, et cetera? Ed can’t remember the doctor’s name. He’s waiting for an email but doesn’t seem to have had anything yet.’
There was a puzzled silence. ‘I don’t know anything about that, I’m afraid,’ the voice came back, in a less singsongy manner. ‘And I’m sure I would do. I’ve not heard of a clinical trial for Pick’s. Let me take your number and I’ll call you back when I’ve had a chance to speak to him.’
I thanked her and terminated the call, turning my face up to the weak, wintry rays. I could hear a woodpecker drilling for insects on one of the bare tree trunks across the lawns, and I wondered if it was the same one I’d heard the day I came for my interview. Could Ed be confused about who had rung him up? Maybe nobody at all had rung, and he’d dreamt it.
The secretary called me back an hour or so later, as I was dusting the music school’s Balinese gamelan. As with the purchasing and consuming of alcohol and the regular massaging of my boss’s ego, this was not on my job description, but it needed doing, so Alvin had sent me in with a duster and a can of Pledge. The instrument, collectively, was huge, a whole room full of different-sized South-East Asian bells and gongs, and I was the only person in there, so I was able to talk freely.
‘It’s Becky from Mountain Way,’ she announced self-importantly.
‘Hi Becky.’ I put her on speakerphone and carried on rubbing a rack of cowbell-type things. It was all very dusty – the cleaners had presumably also decided it wasn’t in their remit.
‘Mr Deshmukh says he doesn’t know who rang your husband. He doesn’t know anything about a drugs trial for Pick’s – and says that to the best of his knowledge, no such trial exists. He hasn’t given your number to any of his colleagues – and he wouldn’t do, without your permission.’
‘Oh. I see. Well, Ed must have been mistaken. I’ll ask him about it later. Thanks for getting back to me.’
‘No problem!’ she sang.
I turned back to the task in hand, feeling miserable. This must be what it felt like for Ed, too, a new and unpleasant world where things didn’t quite stack up in the way they ought to. It was disorientating and confusing and my heart went out to him. I wanted to go home, cocoon us both in the safety of our bedroom and not come out again until I knew the pieces would all fit together properly once more.
When I did get home that evening, Ed was lying in the dark on top of ou
r unmade bed, staring at the ceiling, wearing only his dressing gown. The whole room stank of talcum powder, but even that didn’t quite mask the musty smell of the towelling gown.
‘Hi darling,’ I said, noticing as I bent to stroke the hair back from his forehead that my fingernails were filthy from dusting. We made a grubby pair. ‘Let me go and wash my hands, I’ve been cleaning a gamelan today – bet you don’t know what that is when it’s at home.’
He didn’t reply and I sighed inwardly. It was like communicating with a rock, I thought as I walked into our ensuite. A teenage rock, I concluded, surveying the bathroom. The bathmat was sopping, the shower curtain had been half ripped off its rail, there was a spilled bottle of bubble bath on the floor, a wet towel in the tub and Ed’s large footprints were a dark silhouette in a white settle of talc. It looked as though he’d dumped a whole tub of it over his head. Ed was the only person I knew who still used talc.
‘You’ve had a bath, I see,’ I said, raising my voice over the sound of the running taps as I scrubbed at my hands. ‘By the way, I called Deshmukh’s secretary today to ask about that clinical trial. She said she asked him, but he didn’t know anything about it.’
There was a long pause, during which I tidied up the bathroom and went and lay on the bed next to him. The pillows smelled stale too and I realised how long it had been since either of us had changed the sheets.
‘I got it wrong. It wasn’t him. It was Bill,’ Ed eventually announced cryptically.
‘Who’s Bill?’
‘You know, Bill, who I went to junior school with. No, junior doctor school.’
‘Medical school?’
‘Yes. Medical school. I forgot. It was him who rang me and told me about this trial.’
‘How did he know you had Pick’s?’
‘I emailed him,’ Ed said, the ‘duh’ audible in the statement. ‘He’s a doctor that does research. What’s it called?’
‘A medical scientist?’ I wasn’t sure either.
‘Yeah. I knew he does that kind of stuff. I thought he could help me and he says he might be able to if I take these drugs.’
‘What’s his surname?’
Ed’s shoulders moved in a shrug. ‘Bill … Bill … Can’t remember.’
I rolled over onto my right side to look at him. ‘You told me it was a colleague of Deshmukh’s. I really want to know what drugs he’s proposing to put you on. And you’ll need to run it past Deshmukh and Dr Lark; it’ll need to go on your medical records. I definitely think you should do it, but I’m worried, Ed. You hear some horror stories about side-effects in these trials, things going catastrophically wrong … We need all the details!’
He rolled towards me, putting his arms round me and pulling me close. He smelled of shower gel and the cloying sweetness of too much talc.
‘You worry too much. What have I got to lose?’
‘It’s just all so vague. I’d be a lot happier if I knew the details.’
He kissed me. ‘OK. I’ll ask Bill to email you.’
‘Please do – but I thought he was going to email you? Oh, hello! What’s this?’
I grinned, feeling his penis sticking through the open dressing gown and rubbing against my leg, and Ed grinned back. I thought it was the first time he had properly looked at me for days. I manoeuvred myself into a better position and we kissed again, harder.
Two minutes later we were both naked and I forgot about the trial and all my worries. As long as we always had this, we’d be OK. Everything would be OK.
9
‘I don’t want you to go to work today,’ Ed said, looming up behind me in his pyjamas as I put on lipstick in the hall mirror. ‘Why are you all tarted up?’ He sniffed my neck. ‘And why are you going in so early? You’re wearing perfume.’
‘I always wear perfume!’
I wasn’t ‘all tarted up,’ but I was wearing my interview suit. He was right, though, it was an hour earlier than I usually left. I was surprised – it had been some weeks since he’d had any awareness of what time it was.
‘It’s open day today,’ I added, zipping the lipstick back in my make-up bag. ‘Got to go in early to get everything ready. There’s a load of sixthformers coming to look round and a lunchtime Big Band concert to put on.’
‘Will he be there?’ Ed glowered at me in the mirror.
‘If you mean Alvin, then yeah, of course. He’s the head of department. Right, got to go, love. If I don’t leave now the traffic will be awful. See you later.’
I turned to kiss Ed on the lips but he moved away, tinkering with the old barometer on the wall by the front door. He tapped it, but it hadn’t worked for years.
By noon, the open day was in full swing in the recording studio opposite Fairhurst House. Fifty nervous-looking seventeen-year-olds, accompanied by one or both parents, were being given the jovial welcome speech by Alvin. I was hovering by the foyer doors to welcome any latecomers, and the band were all set up and sound-checked for their two o’clock set. Everything was going to plan. One of the other lecturers, Sandy, and I were unwrapping cling film from the sandwiches I’d made first thing and uncorking the wine. More wine. Needless to say, this was Alvin’s initiative. I wondered if open days at other unis offered this much free booze?
‘Righty-ho,’ Sandy said, pouring himself the first plastic cupful as if this was something he’d been looking forward to all day. It probably was, as well. He was a short, stocky man with a faint Scottish accent, bald but with masses of grey body hair crawling out of every shirt opening – collar, neck, sleeves. He always wore the same grey trousers and academic-issue tanktop from circa 1979, and Alvin scornfully referred to him as ‘a hopeless lush’ – rich, coming from him.
Just as Sandy raised the cup to his lips we heard a faint banging and what sounded like yelling coming from outside.
‘What fresh hell is this?’ muttered Sandy, scratching his hairy chest. He seemed to be, from my brief acquaintance with him, very much a glass-half-full kind of guy. He reluctantly put down his wine and we went out to investigate.
To my utter, abject horror, the source of the banging noise was my husband, hammering on the huge studio windows, shouting abuse at the top of his voice. As Sandy and I ran out to try and drag him away, I noticed that every single person inside the studio had swivelled in their seats and was staring out at Ed, Alvin’s talk forgotten. I couldn’t believe it.
‘Ed!’ I grabbed his arm and pulled, but he was immoveable, a furious light in his eyes, his fists red from banging on the thick glass. ‘What are you doing? Stop!’
‘You know this man?’ Sandy asked, seizing his other arm. Ed tried to shake him off but Sandy’s grip was tighter than mine.
‘He’s my husband,’ I confessed through gritted teeth. ‘He’s not well. I’m so sorry.’
At that point, Alvin burst through the double doors, his face contorted and puce, energy rolling in almost visible waves off him. I imagined I could see both men’s rage massing above their heads, like two storm fronts colliding.
‘You leave my wife alone, you cheating piece of shit!’ Ed yelled in Alvin’s face. ‘I know what you’re fucking up to, behind my back!’
Alvin’s fury turned briefly to astonishment. ‘What?’
I tugged his sleeve, puce with mortification. ‘This is Ed, Alvin. My Ed. I’m really sorry, this is a nightmare. I had no idea he was coming.’
Or how he got here, I thought. I had the car, so he couldn’t have driven. ‘Come on, Ed, please. I’ll take you home.’
Ed wriggled out of Alvin and Sandy’s grips and I lunged for him, grabbing his arm to try and incapacitate him with a taekwondo move – but he lashed out, catching his thumbnail on the side of my face. I felt the blood, hot and thick, begin to slide down under my eye and instinctively bent double, my palm to my cheek.
That was when it all escalated. Alvin tried to grab Ed and force his arm up behind his back, but although Alvin was taller, Ed was a much bigger, stronger man. He punched Alvin hard i
n the stomach, causing him to stagger and topple like a newborn giraffe, ricocheting off a wooden pillar outside the front doors of the studio. By now the prospective students and their parents had abandoned any pretence at discretion and were crowding up against the windows, as though this was a show put on for their entertainment, one of the official open day activities.
Alvin hit the deck, hard, and I waited for him to jump up – but he didn’t. He lay motionless and I realised that he must have hit his head on the pillar. Oh my God, I thought, Ed’s killed my boss. In front of an audience.
Thankfully Alvin stirred and moaned, and struggled to a sitting position, dust all over his jacket and his glasses hanging skew-whiff from one ear. He clutched his head but I was the only one bleeding. Ed, admittedly, did look as ashen with shock as the rest of us. Sandy handed me his hankie – of course he was the type to have a pocket handkerchief – and I pressed it against my cheek as I crouched down and touched Alvin’s shoulder.
‘Are you OK?’
He nodded, anger replacing the shock. ‘Are you? You’re bleeding.’
‘I’m sorry,’ Ed said, to the back of Alvin’s head. ‘I didn’t mean to do that.’
Alvin grabbed my arm and hauled himself back up to standing. He jabbed his forefinger into Ed’s chest and opened his mouth to speak, when he was interrupted by the shrill bell of the studio fire alarm, shortly joined by the fainter sound of the Fairhurst House alarm from across the car park – the two worked in tandem. The double doors opened and all the guests began to pour out, the sixth-formers looking excited and their parents looking anxious.
‘Oh FUCK,’ Alvin hissed. ‘What idiot set that off? Now we’re going to have the fucking fire brigade here on top of everything else!’
I was just relieved that he’d been distracted from another confrontation with Ed, and took a firm hold on Ed’s unresisting elbow.
‘And the police, I’m afraid,’ Sandy added, tapping his mobile screen. He’d obviously dialled 999 when it all kicked off. My heart sank. He slid back towards the studio and for a second I thought he was going to retrieve his wine, but instead he stood by the open studio doors directing the emerging throng: ‘This way, please. It’s just a drill, no cause for alarm. Please head down to the designated Fire Assembly Point – those two pine trees by the gate. Thank you.’