Me Without You (28 page)

‘That’s the great thing about being in a totally hopeless situation: you don’t need a plan. I don’t think I had any expectation that the treatment would work; I just couldn’t bear the thought of doing absolutely nothing but sitting around waiting for my brain to dissolve.’

I thought about that for a long moment and tried to imagine how I’d feel in her shoes. I was beginning to feel like an expert in HD, although I still couldn’t bear the thought of witnessing her decline.

‘Did you see much of your dad when he was sick?

‘Yeah, enough.’ I heard it then, the shift in her tone. It seemed when Lilah spoke about her own experiences, even with Haruto, she was matter of fact. As soon as I mentioned her father, though, a heaviness sank over her. ‘It was awful. He went from this vibrant, life-giving man, to… he couldn’t sit or lie or stand still. The chorea got so bad that he would move constantly, but he was totally unaware of it. And then he began to lose his mind, and eventually he was just a twisted, soulless body in a nursing home.’

Oh, how I wished I hadn’t asked. I’d seen only a few photos of James McDonald, but now I could see him vividly in my mind, and he suddenly looked a lot like his daughter.

‘The worst thing about them dumping me with Grandma and Pa was that every time I saw him he was worse, so to my stupid teenage brain, it seemed like it was happening overnight. And now here I am, and it’s my turn, and it really is happening overnight, just like I always feared. It’s like all of my teenage nightmares are coming true. If I let myself, I could be really, really scared right now.’

We were both silent for a long time after that. I shifted so that she lay partly over my chest and I could stroke her back. After a long silence, she spoke again, and when she did, her voice was hoarse.

‘It was a long, slow march to death for Dad. Mum wouldn’t put him into a nursing home; Grandma and Pa had to force her to when he was beyond even knowing she was there. And he was a there for months, until finally he died from a heart attack. And instead of grief, all we felt was relief because we’d already grieved him a hundred times over.’

There was nothing I could say to that, and we lay silent but for the sound of our breathing, until we were both asleep.

A
few days later
, she was in the bath and I was reading a book on the bed nearby.

I was listening for sounds that she was in trouble. I particularly hated it when Lilah decided to take a bath. There were so many potential hazards in that bathroom. When she’d renovated years earlier, she’d installed an enormous freestanding bathtub under the window. It wasn’t close enough to the wall for my liking, and there was nothing for her to hold on to getting in or out. And those damn floorboards in the bathroom were an absolute nightmare; she always filled the bath too high so it was always overflowing when she got in, and they were slippery at the slightest hint of moisture. I’d been putting down towels and bath mats, but Lilah kept picking them up and throwing them in the hamper.

After a while, I realised I was turning the pages but not absorbing a word of the storyline, so I stood and walked to the bathroom door.

She was so beautiful and frail, humming out of tune to the music playing from an iPod dock on the window sill.

‘Hi there,’ she smiled at me. ‘Good book?’

‘Not really. Do you think we should get married?’

She didn’t miss a beat.

‘I’d love to marry you, Callum Roberts. If I wasn’t me, I’d marry you in a heartbeat.’

‘But given that you are you…’

‘This has been the problem all along, you know. The only problem, actually.’ She lifted her hand from the water and watched the droplets fall back into the bath. ‘I’d love to promise a lifetime to you. I just don’t have one to give.’

‘Of course you do,’ I said. ‘It might not be as long as we’d like, but it’s still a lifetime. And while it’s very noble of you to try to save me from your shortened life expectancy, Lilah, the whole way along you’ve been missing one important factor here.’

‘And what’s that?’

‘That I love you. And I’ll love you forever, whether you’re sick or well, or here or… not.’ My eyes filled with tears, and then hers did too.

‘I love you too,’ Lilah whispered, and she pressed her hand over her mouth as if she could stop the sob that soon escaped it. I walked to the bath and dropped to my knees beside her.

‘I know you thought that you were saving me from having to be a part of this, Ly. But you were also taking these moments from me, from us, and I wouldn’t trade them for the world.’

‘I just want you to be happy, Cal.’ She slurred worse when she was upset, and the words were barely distinct.

‘I want that for you too,’ I said. She fumbled her wet hands for mine against the edge of the bath and as our fingers entwined I rested my cheek against them to stare at her. ‘You, in
all
of your perfect weirdness, are the love of my life. I can’t fix this for us, Lilah, even though I want to more than anything else on this earth. But I can promise you that I’m yours no matter what happens next.’

‘I love you so much, Cal. I feel exactly the same. I’m sorry that… I’m sorry that this is all of the life we will have together. But I’m so glad you found your way back to me.’

For a moment we were silent, except for the rough-drawn sounds of our breathing and the periodic drop of her tears into the bathtub.

‘That sounded a lot like a set of wedding vows to me,’ Lilah whispered. I squeezed her hands and nodded.

‘None of that legal bullshit, right?’

‘This is almost exactly how I dreamt it’d be, except I wouldn’t be naked and you wouldn’t be kneeling in a slippery puddle next to my bathtub.’

She sat up and we shared a soft, lingering kiss. I could soar now, just for a moment. She loved me too, and she’d said it. Everything else slipped out of my mind and I was fully there, and fully alive. I didn’t want to move, not ever, because I didn’t want to shatter the spell.

The floorboards undid me. My knees went numb, then my feet, and then I realised that her bath was getting cold. Damn reality would not be put off, not even for a few more minutes. I kissed her again.

‘So, what do you want for our reception dinner?’

‘I’ll get out in a minute and help you cook.’ It was code for
please let me do it myself
. Not only because she was still so damned independent, but time had not improved my vegan culinary skills one iota. She brushed a stray curl back from my forehead. ‘I
knew
you were a romantic deep down inside.’

‘You caught me.’

W
e instituted
a tradition at the farm. Every Sunday, we’d spend all day exploring the garden looking for ingredients, and then researching recipes that would best suit them. I bought insanely expensive wine matched to the food, and even had a bucket of the coconut soy ice cream Lilah liked so much couriered up from Manly.

As the sun set, Leon and Nancy would walk down the drive and Peta would arrive soon after. We sat on the deck and ate and swapped stories and drank until the laughter and companionship almost drowned out the reason we were all there. It was like a mini Christmas Day every Sunday night, and for those brief hours I lived fully in the moment, just being there with Lilah and
her
people, who collectively had become my family.

I watched the joy on Lilah’s face in the flickering candlelight, and I tasted the depth and richness of the food and the wine. Although she’d be exhausted, we would cautiously, tenderly make love in the bed afterwards—with the French doors open just a crack, and the cold winter breeze and the sounds of the ocean washing over us. It was those nights, more than any other, when I would lie awake in the quiet afterwards, thinking about who we were, and where we’d come from, and as little as possible about where we were going.

I
t was
a cool morning and we’d decided to go for a walk, out the long driveway and past Leon and Nancy’s. If Lilah was still up for it, we’d planned to keep going and have a look at the neighbouring properties up close. We hadn’t yet made it to the end of the driveway but I could already see her tiring.

‘Have you told Ed and Will about me?’

‘I mentioned you at Christmas when we were chatting,’ I admitted. ‘But… as for everything else… I don’t really speak to them all that often, so there hasn’t been the opportunity.’

‘You should ring them.’

‘Why?’

‘You’ll need them sooner or later, Cal.’

That did not bode thinking about.

‘I’ve gotten this far without them.’

‘What are they like?’

She stopped for a rest and I automatically stopped with her. All of the hundreds of hours of conversations with her, and I’d only mentioned them once or twice. I kicked at the gravel driveway with my feet as she leant against a gum tree with her hands behind her back.

‘They’re not like me,’ I said. ‘They don’t wax their chests, for a start.’

She grinned.

‘Nor do you these past few weeks.’

She was right. I felt like I was becoming a slow-motion werewolf. It had been weeks since I’d had my hair cut, and it felt unruly and long—out of control—just like my life.

‘I have higher priorities at the moment. And frightening regrowth. But that’s beside the point. No, my brothers are…’ I searched for words. ‘They’re manly men. Does that make sense?’

‘Blokey blokes, huh.’ She raised her eyebrows at me.

‘I might have said meatheads, once upon a time. They were a barrel of fun and fights as kids; I was studious and focused. While I was studying, they were usually wrestling each other or entertaining girls in their bedroom and getting caught and chastised by Mum. Whereas I
was
just studying, and I only discovered how much fun girls could be by the time I got to university.’

‘Which was probably a good thing.’ She watched me thoughtfully. ‘I reckon you were an awkward teenager.’

I laughed.

‘Oh, you have no idea. I felt like when I walked my knuckles dragged along the ground behind me—not because I was a Neanderthal, just because my limbs were so long and it took me years to grow into them. But I made up for lost time with the ladies once I hit my early twenties though, I promise.’ I winked at her and she raised her eyebrows at me.

‘I’m sure you did. But you never mended bridges with your brothers before they both moved away?’

‘It wasn’t even that we didn’t get along, so there were no bridges to mend. It was just they were so different to me, but they were so similar to each other.’

‘What do they do?’

‘Ed is crazy on sport. He was on a short-term contract as a soccer coach in France when he met his wife and now he’s settled there permanently. I think he’s coaching some famous team, not really sure. And Will is a mechanical engineer; I think he works with car engines or something.’

‘So he stopped wrestling long enough to do some studying.’

‘They both did. Ed has a degree in sports psychology or some such nonsense. But you see the problem: I can tell you seventeen ways to sell a car and I can manage to drive one, but if it stops working, I don’t even know how to change a tire. And as for sport…well, I watch it sometimes, and I do like squash… but it’s not my thing. ‘

‘You’d much rather look at drafts of artwork for ads, or drink fancy wine, or get your hair cut every five minutes so you look neat all of the time.’

‘Exactly.’

Lilah stepped away from the tree and continued her awkward shuffle along the driveway.

‘Did you ever figure out what Ed’s wife’s name is?’ she asked me as I fell into step beside her again.

‘Karen.’

‘No way! I thought you said it was Lizette or Suzette?’

‘I’m kidding—I still don’t know.’

‘You’re an arse.’

‘So I’ve been told. But surely I’m an adorable one?’

‘You have your moments.’ A few more steps down the road, she turned to me and frowned. ‘Did you ever figure out what Ed’s wife’s name is?’

I swallowed. Hard.

‘Lizette.’ I said. ‘I’m pretty sure it’s Lizette.’

1
1 May

If my mind were a tide, it would be pulling away now. It would leave a damp shoreline, because I know I’ve made some kind of impact here. But the next wave that crashes here will not be me, because my moment will have passed.

This morning Callum stopped me from taking my antispasmodic medication a second time because I forgot that he’d already crushed it up and given it to me in honey. I spent at least twenty minutes trying to figure out how I used to get the hand towel to hang on the bathroom vanity before he quietly came and took it from me and hung it simply on the hook. Callum doesn’t really leave my side. He thinks I don’t know he’s lurking outside the bathroom or watching like a hawk from the windows if I go out for fresh air.

Mum quietly told me yesterday that I’m snapping at him, and asked me to try to keep it in check. I don’t think I’ll be able to, because I’m literally not aware I’m doing it. Just like I’m not aware of the chorea until someone points it out, the agitation simmers somewhere below my consciousness.

And it’s awful, beyond awful, because I have been in Callum’s shoes with Haruto and I know the pain and the frustration of watching someone you care about suffer these exact symptoms.

Callum tells me he loves me dozens of times a day, but he doesn’t need to. Even if he was mute, I’d still get the message loud and clear, because his eyes and his hands and his kisses say it. The fact that he is still here says it. When he wordlessly chops peas in half so I can swallow them, I know he loves me. When I see him pretending to remake the bed for the fifth time when I go into the en suite to pee, I know he loves me. When I realise he’s cluttered up my bathroom floor with improvised floor mats—again—so that I don’t slip, even though it’s driving me completely insane to be babied like that—I know he loves me.

I worry for Cal. I’m going to die, and I know it’s going to rock him. Losing Haruto nearly killed me, and the connection I had to him was loose, sporadic at best. I think Callum will probably go immediately back to work, and he’ll stick his head up in about twelve months’ time and suddenly realise he’s lonely again.

If I could make a dying wish and know that it would come true, it wouldn’t be to save myself, it would be for Callum. I’d wish into existence a wife for him, someone bursting with fertility and gentleness, a curvy woman—I think he’d like a curvy woman. She’d pull him into her cushiony bosom and soothe his loss, and cook him dead animals and give him beautiful babies. She’d make him ring his fucking brothers. And he’d move into a big house with her and their children would have the one bedroom each right up until they leave home.

Oh, God, I’d wish that for him. I’d wish him happiness, all of the happiness I’ve compressed into our short time together, spread out over the decades that he has ahead of him.

There are no magic genie bottles here though. Just bottles and bottles of pills.