Me Without You (27 page)

‘But what will you do?’ My lips were numb. Lilah brushed her thumb against the back of my hand.

‘The main thing I’m going to do, Callum, is get sick, and then I will die. You need to understand that.’

I brought her hand back to my cheek and hid behind it. I didn’t want her to see that I was on the verge of crying like a bloody baby. Again.

‘I want to go back to Gosford with you,’ she whispered. ‘I want to laze about the house and eat fresh greens and talk shit as if we have all of the time in the world.’ Her hand jerked against my face. I shut my eyes tight. ‘I want to pretend this is the middle of our life together. I want to pretend we’ve had decades and we have decades left. I want to pretend that we know everything about each other but we haven’t run out of things to talk about, because we just like to
hear
each other speak.’

It sounded lovely. Truly lovely. She sat up straight, and when I opened my eyes and looked back to her, her gaze was hard.

‘But we do this on my terms. When it’s time for me to go, you let me go, even though it’s too soon and you don’t want me to leave.’

‘Jesus, Lilah. You can’t ask that of me.’

‘I’m strong now. I’m as strong as I’m going to be. Tomorrow morning when Lynn does her rounds, I’m going to discharge myself and go to the apartment. We can spend a night there so I can water the plants and pack some things up, but then I want you to take me to Gosford. And when I get sick again, I’m not coming back to into the hospital. Do you understand?’

Maybe I’d change her mind, maybe I wouldn’t. She’d never convince me to stop trying. I opened my mouth to tell her as much, and she clamped her hand over it.

‘And that is all there is to it, Callum. If you can’t deal with that, then go. I want you here, but I won’t
have
you here if you can’t do it my way.’

Her hand was still over my mouth, but our eyes were locked. She was scanning me, looking for resistance, ready to turn me away again. I reached up and gently shifted her hand away from my face.

‘I understand.’

I didn’t.
Of course
I didn’t. It was all too new, and I was a long way from even understanding this strange place I found myself in, let alone her demands. But I needed time to grasp it all, and this conversation couldn’t survive a month-long pause.

‘Good.’ Her smile was satisfied, until a sad thought crossed her mind. ‘It’ll be a relief to get back to the apartment. What was left of my pot plants is probably dust by now.’

L
ynn didn’t resist
when Lilah asked to be discharged the following day, and I’ll admit it was a relief to walk her to my car and drive her home.

And Lilah was right about the garden. It was all but dead.

‘I just wish I could do what my dad did,’ she sighed as she walked among the pot plants with a watering can. ‘He really had a gift for making things bloom. No matter how hard I’ve tried over my life, I just can’t do it.’

‘You can’t do it with plants,’ I murmured. ‘You did it with me.’

She looked up at me, and we shared at wry smile at my corny line.

‘Did you
bloom
these last few months?’ A flicker of guilt crossed her face.

‘I don’t want any secrets between us anymore, Lilah. So I’ll tell you I have been utterly, hopelessly miserable since we said goodbye at Gosford.’ I looked out to the ocean beyond her balcony. ‘You could have just told me, you know.’

‘I thought I knew how you’d react,’ she said, and gave me a sad little laugh. ‘And now I know for sure that I was right. It was only fair to give you an out before you knew you needed one.’

‘I think you’ve lived a big life, and you’ve seen the four corners of the world and you’ve known fascinating people and achieved a lot. Maybe to you this relationship is just another part of all that, but to me, this has been a mind-blowing, soul-changing revelation. And to have you take that away from me because you could see things were going to get rocky up ahead, well, I appreciate the sentiment. The fact is, when I imagine the pain of watching you get sicker and compare that with life without you, I know immediately that I’m going to stand by your side withering in helpless frustration even while I feel embarrassingly grateful that you are still a part of my life.’

Lilah’s hand jerked and the watering can moved with it, spilling water all over her leg and the balcony floor. She carried on as if nothing had happened.

‘How did you know it was back?’ I asked her. Lilah plucked a weed from a pot plant and shrugged.

‘I suspected for a while, maybe even since before we met. Knowing this guillotine was looming over my head, I’ve always seen symptoms even when there were none, but the last year or so… there was just a change in my ability to keep up at work…’ She tossed the weed over the balcony onto the street below and went back to watering. ‘I think that’s part of why I tried to tell myself I’d just keep you at arm’s length.’ She looked up at me and flashed a cheeky grin. ‘See, I was delusional already. We both know this isn’t the kind of relationship a person can control.’

‘Don’t you think it’s brutally unfair that you’ve been well all of these years and we meet just as you’re getting sick again?’

‘Chance is chance, Cal.’ She watered a completely dead plant, as if there was hope for it yet somehow. ‘After we met the first time, I decided it
wouldn’t
be fair to you to let this thing between us solidify. I actually drove to work after that first night so that I wouldn’t see you, and then—bang—there you are, walking past my office at just the right time. Part of me wants to believe this was meant to happen, but most of me believes it just did, and once we knew each other…’ She trailed off and turned back to me. ‘Have you taken leave from work?’

‘They emailed me this morning.’ I had actually read the email while she packed up the hospital room, but then I’d forgotten all about it. Funny how work really was the least of my worries these days. ‘The directors have given me three months’ paid leave, after which we’ll reassess.’

‘Reassess,’ Lilah repeated softly. The flow from the watering can had slowed to a trickle and she turned back and held it towards me. ‘Refill?’

‘You know you’re watering dead plants, right?’

The dozens of pot plants on the balcony contained mostly leafless sticks in dry dirt. She shook the watering can anyway and raised her eyebrows at me.

‘We’re in last-chance bucket-list territory, shithead, and being an amazing gardener is on my bucket list, so get hopping.’

1
7 April

I’m not sure that I’ll ever forgive Mum for contacting Callum.

I
am
sure that I’ll be forever grateful.

I’m on the last part of my journey. These are the last days and weeks that I’ll be here, and I thought I knew what it would look like. I’ve been anticipating this point in my life for nearly six years. Everything is in place; all of my affairs are wrapped up—all except one. What’s left is the best loose end, the love knot I’ll be slowly tying until I go. What Mum and Callum have given me is an unexpected beauty and warmth—and complication—during this very last period of time.

I still daydream about marrying him sometimes. I still retreat to that garden in the mountains and promise him the lifetime that I don’t have to give. It is a beautiful and delicate dream, the calmest part of my mind. Maybe it will be the last part left. I’d like that, for everything to fade away now, and for my last thoughts to be of Cal.

But now… I get to live the honeymoon. I’m the luckiest woman in the world, given that, right down to the very strands of DNA that compose me, I have been fucking unlucky since literally the moment of my conception.

If it was just the swallowing, or just the chorea, or just the way my balance is failing, I’d be fine. There are solutions to those things. Give me a feeding tube. Pump me with antispasmodics. Hand me a walking frame. I could deal with that. I really could.

But the treacle is returning. The sense that my mind is becoming muddy and my thoughts are jumbled in amongst the mess. I search for ideas, and find only concepts. It’s a fine distinction, I know, but it’s an important one. What is that thing called, the thing I want to pick up my food on? I could tell you everything about it. It’s cutlery and it’s got four prongs. It’s sterling silver and my grandparents were gifted the whole set on their wedding day, which means it’s nearly seventy years old—maybe I could even calculate down to the day how old it is, given I know their anniversary. I’ve eaten a thousand meals with it at the farm, some of which I can remember in vivid detail. It’s sharp and cold and surprisingly heavy because it’s such a high-quality set. It belongs to a knife and a spoon.

And then I will sit and stare and hold it and finger it and still minutes might pass before I can assign it the name fork. It’s happening more and more. Not every day yet, but every second day. The fog has returned, and it’s thickening in front of my eyes.

It’s just too much, too much altogether. That’s why I can’t handle it. Or so I tell myself. The truth is, I’ll never know what I could or couldn’t deal with, because these were the cards I was dealt.

I
t was almost
a relief to be back at Gosford, even given the circumstances. I think I’d always have missed closure if we’d left things the way they were.

I was getting used to being with Lilah again, the initial delirium and shock of the week in hospital wearing down. I was learning not to see the jerking movements of her hands or the clumsy way she walked now. There was an awkwardness to her steps and a stiffness in the muscles in her legs. She was still very much mobile, and if it was only a few steps she might just have been rigid from sitting too long. But when I watched Lilah cross a room or in the garden, it was clear that she was struggling.

And that was bad, but not nearly as difficult for me to see as her choking. She let me know in her typically unsubtle way that I couldn’t panic when she tried to swallow and coughed instead, because I only made things worse when I leapt to my feet and rushed to her side.

‘For
fuck’s sake
, Callum. Give me some fucking space!’ She’d barely be finished choking before she’d let loose on me. I retrained myself to eat very slowly so that I didn’t finish a long while before her. I learned to focus on my breathing while we ate, and if she did seem to gag, I’d take two long breaths before I tried to help her.

I also found ways to be beside her almost twenty-four hours a day. She was clumsy, and her coordination was already suffering. If she went to the toilet, I casually lingered within earshot, in case she fell. When she showered, I’d wait until she was in the bathroom, and as soon as I heard the water turn on, I’d stand at the door and listen to make sure she was okay. When the water turned back off, I’d quickly walk away so that she didn’t know. She was more open now with me, about our relationship and her feelings for me, but she still refused to be coddled. I knew instinctively that Lilah would refuse to be treated like an invalid long after she really had lost her independence. For now, I was part guardian angel, part stalker.

I’m sure part of my subconscious motivation was to soak up every second in her presence while I could, but mostly I was just scared. Every room, every activity, every moment brought potential danger, and somehow I needed to enjoy every second of it. The days were gloriously long, so much time to enjoy her, and so much to do to keep her safe.

O
nce we’d adjusted
to the new normal, I began to encourage Lilah out into the garden. She was at her best in the autumn sunshine. I’d pack a picnic basket with a blanket and some books and snacks, and take her to a soft patch of grass. This naturally lent itself to her wanting to work in the garden again, and although this was a nerve-wracking exercise for me, I could see that she needed it.

‘What do you think happens when we die?’ she asked me one afternoon as we harvested from the vegetable plot.

I didn’t know how to answer her, and I guess the silence that became awkward answered for me.

‘Same as me,’ she surmised correctly. ‘Nothing.’

Don’t get me wrong; I wished with all of my being that my rationality was wrong and there was some beautiful afterlife waiting for Lilah. The problem was, I just didn’t buy it, not even now when it would give us both some desperately needed comfort.

‘My belief is that we only have this life,’ I admitted. I tossed more celery into the cane basket we were harvesting into. ‘So you’re the same?’

‘I lean towards humanism,’ she admitted. Suddenly she snapped a stalk of celery off the plant I’d just cut and bit into it with some force. ‘I expect that when I die, it will seem like falling asleep and that will be the end of it—a relief, just like dozing off when you’re super tired or going under anaesthetic.’

‘Aren’t you scared?’ I asked. I was amazed and bewildered, and too fascinated by the turn in conversation to continue with my physical work.

‘I’m not,’ she shrugged. ‘I’m not scared at all, which scares me, in case that’s a symptom. Dad was wildly impulsive once he was really sick. Once, Mum found him climbing down the cliff face in front of the house here; when she asked him what he was doing, apparently he had just thought he might paddle in the water for a while. The connection between activity and danger had come apart in his mind.’

I made a mental note to reinforce the fence one night while she was asleep.

‘But I think I’m being rational about it,’ she continued quietly. ‘I just expect I’ll get sick with a flu and maybe there’ll be a fever, and I’ll slip in and out of consciousness until there is only darkness. My brain won’t be awake enough to feel fear.’ She gave me a smile. ‘Darkness. Peace. What’s there to fear? I won’t even
know
to be scared.’

I had to go back to cutting the line of celery plants before me; the image she painted was too depressing. After a moment, she jumped over the lines of plants to cup my shoulders and I had to look into her face again.

‘But, hey, if I’m surprised and I die then wake up among fairies and there is some kind of afterlife, I’ll sneak back and mess you up somehow. Maybe I’ll pop into your room to tip your underwear basket out, or reorder your shoes so they aren’t even in
pairs
anymore.’ She feigned horror and I laughed, in spite of the agonising way my gut twisted.

‘I can more easily imagine waking up one day to find my bed covered in leaves or flowers or something.’

She giggled too, and bent to kiss the top of my head.

‘You’re right. I would like to hope I’d be more subtle, but quite frankly, if I drift off to sleep and wake up a fucking fairy, I’ll make you look like you just stepped out of the Mardi Gras.’

‘
T
he symptoms started just
before my thirty-fourth birthday,’ she explained to me as we lay in bed one night the following week. The anxiety I’d felt the first few days had passed, and finally I could just enjoy her again. ‘I'd had the genetic test just after Dad died and I knew it was coming. I knew I’d be young too, because of my CAG repeat size. Do you remember what that is?’

‘I remember yours was high.’

‘Forty-eight.’ Lilah said, and it was clear from the tone she used that she had considered the number at length over the years. ‘It’s high, but it doesn’t mean the HD is worse. It just means the symptoms are likely to start earlier and progress quicker—and mine arrived, bang on time.’

‘And your dad?’

‘He was a bit older when he got sick, and my grandmother was a bit older still. There are some cases where it gets worse with every generation. That’s why I was never going to have kids. It stops here.’

‘How did you know you were sick?’

‘Most people have psychiatric symptoms first. Often it’s anxiety or depression, but I don’t think I did. My feet just started going numb, and I
knew
, and I was just so furious. I had read that keeping my brain stimulated would lessen the motor symptoms so instead of seeing a doctor, I just started working like a maniac. I worked and I researched, and I was just livid with the whole universe.’

‘Is that when you found the neurologist in Mexico?

‘No, first I found Lynn. I did what you did that morning in the hospital—I tried to talk her into giving me the cure,’ she laughed softly. ‘I just had some crazy feeling there was some breakthrough she was withholding from me. And via Lynn’s clinic, I met Haruto.’

We drifted into silence. I brushed the hair back from her face and listened to the ocean for a moment.

‘Do you want to hear about him?’

Her voice was small. Of course I didn’t. I didn’t want to know anything more than I already knew, but there was a thread of longing in her tone, and maybe she needed to talk about him. I forced down my jealousy.

‘Absolutely.’

‘You never talk about your exes.’

‘My exes aren’t very interesting.’

‘I’ll bet they talk about you.’

‘All of my notable exes would be happily married by now and at some point each of their husbands would have said the words
Callum Roberts is an arsehole
.’ We both laughed softly.

‘Tell me about one.’

I sighed.

‘You’re a demanding wench. I’ll tell you about Annalise.’

She was my last girlfriend before Lilah, a silly, giggly little girl, really.

‘Can I guess? She was a gym instructor.’ It sounded like Lilah had me pegged anyway.

‘Wrong,’ I said, and I was smug, until I realised how much worse the truth sounded. ‘She was a beauty therapist.’

‘Oh, this is perfect. Let me guess. She was
your
beautician?’

‘Only for a while.’ I pretended to be defensive because it seemed like a hitherto heavy conversation had suddenly turned light-hearted and teasing, and even if it was at my expense, that was preferable to the previous topic.

‘Isn’t that a conflict of interest on her part? I mean, lawyers and doctors can’t date clients.’

‘It was handy, actually. She never made house calls until we were going out.’

‘And Annalise the house-call-making-beautician, was she beautiful?’

‘Not like you,’ I said, and I meant it. ‘But she was attractive. Pretty is a better word for her than beautiful.’ All of my ex-girlfriends had been pretty. It had seemed so important, once upon a time. No wonder I’d never settled down.

‘What went wrong?’

‘We went out for a few months. It never actually went wrong; more… I don’t know. I knew it wasn’t going anywhere.’

‘Because she wasn’t perfect.’

‘No,’ I said, and then it felt like my heart was going to leave my chest as I realised I could say the words and it wouldn’t do any damage at all to what was already a rock-bottom situation. ‘Because she wasn’t
you
.’

The playful light disappeared in Lilah’s eyes. She bit her lip and settled back against my chest. I knew she wasn’t upset, and I knew she wouldn’t retreat. She wanted me there, and she had no secrets to hide behind anymore—I could be open with her now.

We lay silently together for a moment.

‘I hate this disease, Lilah.’

‘The thing is, Cal, it’s not a disease. It’s my DNA. That’s what
I
hate most. It’s not something that happened to me, or something I caught. It’s the way
I am
, so when I try to hate it, I’m just hating a part of myself. That’s what’s most awful about it.’

‘What did Peta think of all of this? You never told her you were going to Mexico?’

‘No, we told Haruto’s parents and they tried pretty hard to talk us out of it. So I left Mum in the dark. She has always been behind me one hundred per cent but I couldn’t ask this of her. It didn’t seem fair.’

‘Really? It’s hard to imagine either of you pulling any punches.’

‘Mum absolutely
lost
it when I did the genetic testing and we knew I had the gene,’ Lilah sighed.

‘It must have been hard for her.’

‘Oh, I know, Cal. I’m sure it was horrific for her—but, Jesus, it was
worse
for me. Grandma and Pa had both died by my final year of high school, and then Dad finally died too, so we had both been battered and bruised by life and I just think she’d reached the end of her rope. She insisted I have the test, I think looking for a ray of sunshine and believing I’d somehow dodged the genetic lottery, and then I didn’t. So to cap off the worst year of our lives, I got accepted into law and the world was briefly my oyster, and the next week found out I had HD, that my CAG repeat was high, and that within twenty years I’d be well on my way to hell. And just when I needed support to process it all, Mum went totally off the rails, so I was alone with it.’

‘I’m sorry, Lilah.’

‘I survived. And I got past it. I had to because I knew life really is too short, at least for me.’

I think she was trying to be funny again, but this time I didn’t laugh.

‘So you went to uni anyway?’

‘Mum didn’t want me to. She thought, if I only had fifteen or so good years left, that I should make the absolute most of them. She proposed selling the farm and travelling the world while I still could. She even offered to come with me.’

‘You went to uni anyway, obviously.’

‘I’d already seen the world. I knew what was out there. I wanted knowledge, learning, challenge, stability… mostly I wanted something normal before all of the twitching and insanity started.’

‘And you had it.’

‘I really did. I’ve had a great life, Cal.’

‘Your mum obviously came round.’

‘She did, and once she got over her meltdown, she was, and is, unfailingly awesome. But I didn’t tell her when I started getting symptoms; I just left it unsaid. I knew she’d figure it out for herself. She didn’t exactly love Haruto, so when we decided to go and try the stem-cell therapy, I just told her he and I were going travelling. I kept in touch with her via email but for the time we were away I just let her think I was making the most of the time I had left.’

Lilah shifted slightly on the bed beside me, snuggling closer at the memory.

‘So you lost the feeling in your feet, and then you got it back. Is that why you never wear bloody shoes?’

‘I missed the feeling of the earth beneath my feet. But no, I don’t have an excuse, I’ve always done that. I just fucking
hate
shoes.’

I felt her grin in the darkness.

‘How long was Haruto sick for before he died?’

‘A few months. He was breathing on his own, but otherwise he was a vegetable, and he didn’t ever regain consciousness. I lied to everyone and told them we had a car accident. I didn’t even tell his parents the truth. I just said the stem-cell therapy didn’t work and we decided to make a holiday out of the trip and were travelling around Mexico and that’s when he got hurt. It was such a fucking stupid lie. They must have known the truth. But they were just such great people and I couldn’t bring myself to draw attention to the fact that he was dying and I was actually living.’

‘I’m sorry, Lilah.’

‘The worst of it was I never contacted them again. He died, I went to the funeral and we cried together, and I told them I’d keep in touch. And I didn’t. It was too hard.’

‘I’m sure they understood.’

‘Maybe.’

‘And what was your plan from there? Just go on lawyer-ing?’