Me Without You (26 page)

‘You can’t
know
that.’

‘I do know that. I feel it. I can hear it in my fucking voice, for God’s sake.’ She pulled my hand to her face and rested her cheek against it. There were tears in my eyes and my jaw was flapping like a fish. I wanted to argue with her. I just didn’t know how to start. When she spoke again, her words were softer. ‘We did a swallowing study a few days ago. When I swallow, a tiny amount of saliva is slipping into my lungs. That’s why I keep getting pneumonia, and that’s why I’ll keep getting it, until it kills me.’

‘But pneumonia is
treatable
.’ I was so frustrated that I had to stand, and I began to pace the length of the room. ‘You bulldozed your way into a one-in-a-trillion miracle cure last time; this time you’re going to let a bloody cold take you down?’

‘If the
bloody cold
takes me down, it’s a mercy,’ Lilah shrugged. She’d had years to prepare for this—I’d had hours. But I couldn’t fathom ever being as calm about this topic as she was. ‘If I wait for the HD to do it, I will forget how to swallow altogether, and smile, and wipe my bum. One day Mum will come into the room and I won’t remember her name, and because my brain will have lost the connection between her name and my memories of her, even once you remind me who she is, I won’t care. That’s
exactly
what happened to my father. So I get a fever and I cough and I die? That sounds
divine
to me at this point.’

‘Do you two want some privacy?’ Lynn asked. I was still pacing up and down beside Lilah’s bed, from wall to wall, looking for a tiny glimmer of hope and feeling like I had just found one, and Lilah or Lynn had immediately shot me down.

‘I just need to understand, Lynn. I need to understand why, with all of the resources of this hospital and your training and this whole damn industry, that there is absolutely nothing that you can do to help her.’ My voice broke.

‘There is plenty we can do to help her, Callum. I have an entire team of specialists ready to treat the symptoms as they arise.’ Lynn rose and her expression was sad as she watched my pacing slow. ‘The only thing we can’t do is change her DNA.’

O
ver the next few days
, I could barely leave the hospital room.

I sat with her and slept beside her and shared her disgusting hospital food. We held hands in silence, we talked about the weather, and we read the newspaper together. There’d be time for explanations and deep conversations—this wasn’t that time. All I could do was soak up the wonder of having her back beside me.

And then I began to search for answers, to try to find a way to understand. Lilah, Peta and even Lynn sat with me for hours, showing me academic studies and textbooks and silly line drawings to try to help me understand what was happening. Lynn showed me the sequencing they’d run all of those years ago that had shown the genetic mutation that caused the disease. She explained patiently and repeatedly the basics of measuring trinucleotide repeats in genes, which basically put a number on how bad the Huntington’s mutation was in Lilah’s DNA. This was then fed into a model which predicted the onset of symptoms, so Lilah had known to expect to get sick in her early to mid thirties. Although HD symptoms could start at any time, Lynn’s experience was that the earlier the onset, the worse the decline. Some HD patients didn’t get sick until their sixties. Failing another miracle, Lilah wouldn’t live to see her sixties.

Lilah’s quirks suddenly made a lot of sense—her paranoia about MSG, for one. There were a few disparate journal articles that suggested that one of the ingredients in MSG was somehow related to neurological disorders, and that was enough for her—she’d eliminated it religiously.

‘I wanted to give myself the best chance. So I read, and I read, and I read, and I turned every novel idea into a dogma,’ she explained softly. ‘Haruto was a strict vegan. I only adopted the diet after he died, but I always felt better for it. And there’s no shortage of science suggesting that a plant-based diet is better for general health.’

She was still adhering to her diet in the hospital, and I took that as a sign that on some level, she did still have a degree of hope. Why anyone would endure the hospital’s pathetic attempt at vegan food without a genuine belief that they would reap some greater benefit was beyond me.

And of course I did my own research. While Lilah rested, I bombarded Google with search after search. And just like I had the day after we met, I was looking for the right combination of keywords or characters to give me what I wanted: hope.

It didn’t matter how I cut it, though, the situation was dire. Research was underway all over the world, studies and trials and ideas being worked on and worked out all of the time. There were genuine possibilities for the future, too: research into stem cells was obviously promising, and studies in animals had shown some potential in a DNA-based drug which might disable the mutated gene for a period of time, causing a break from symptoms, much like Lilah had experienced already.

I showed Lynn my research when Lilah was off having a test.

‘Down the track,’ Lynn told me, very gently. ‘There’s definitely hope that in my lifetime we will see a cure for this disease. It might well be that concept, the DNA-based one, that cures it.’

‘But what about Lilah’s lifetime? The article said the drug trials are only a few years away. ‘

‘Yes, Callum. The antisense drug trials in human patients are at least two years away.’

Two years. Twenty-four months. Ninety-six weeks. It was nothing, a blip in time. Surely Lilah could hold on that long? When I said as much, Lynn shook her head silently.

‘She has to, Lynn. She’s come this far.’

‘You’ll keep reading and you’ll keep researching,’ Lynn told me softly. ‘No matter how pessimistic Lilah or I or anyone else is, you’ll keep going, because you love her. ‘

I nodded. She was right. I couldn’t stop wishing or trying if my life depended on it.

‘But if you want the truth from me, Cal—it’s this: I don’t know how the Mexican clinic triggered her remission, or why it ended, and I don’t know why she’s deteriorating this rapidly. But as hard as it is to hear and accept, I’d say we’re talking about months for Lilah, not years; and I’m pretty sure she’s okay with that.’

‘I can’t just give up.’

‘Of course you can’t. But I think you need to find a way to focus all of this fantastic, positive energy on making the most of the time she has left.’

Lynn left me alone after that. I stared at the laptop screen until my eyes ached, tossing theories and possibilities this way and that in my mind. There was a university in China conducting animal trials on the antisense concept. Could I take Lilah there? Bribe someone to try to help her? Try to steal some of the drug? How could I convince Lilah? Would Peta stop me?

I put the idea on ice when Lilah came back to the room. She was tired and she needed me to be calm and supportive, not bouncing crazy ideas off her. As I left to retrieve her an alternative dinner—
any
alternative to the limp salad the hospital had delivered—I promised myself that I’d come back to it, maybe in a week or two once things had settled down.

W
e had
some visitors during the hospital stay. Peta was in and out, trying to maintain her private singing classes back at Gosford, staying overnight in a nearby hotel when she could. Nancy and Leon brought a few fresh salads in and a box of fruit, and sat and had morning tea with us as if we were in a café instead of a hospital ward. They came with all of the news of the family and the farm, and of promises for astounding preserves from the winter crop.

On Wednesday afternoon, a group of four people appeared at the door while Lilah rested. I was reading a newspaper at the time—rather I was
rereading
for the tenth time the previous day’s edition—and I rose and quietly slipped into the corridor.

‘Can I help you?’

‘You must be Callum.’ The oldest man in the group stepped forward as if he was going to shake my hand, but then shocked me by embracing me. ‘I am so relieved that you’re here. I’m Alan, one of the partners at Lilah’s firm. This is Bridget, Anita and Liam.’

‘We’re—we were Saoirse’s team.’ Heavy tears swam in Bridget’s eyes. She was young, maybe in her early twenties, and seemed overwhelmed. ‘I’m her legal secretary… I was, anyway.’

‘And Anita and Liam were Lilah’s paralegals,’ Alan explained quietly, although he didn’t need to because I’d heard their names dozens of times—usually in between curse words, given the brutal disappointment Lilah seemed to experience in their work. I surveyed the faces of her colleagues and saw the misery within their eyes. ‘How is she doing?’

‘Much better,’ I said. And in terms of the pneumonia, she really was.

‘I’m so, so happy that you and she…’ the tears spilled. I was suddenly uncomfortable with the sympathy in Bridget’s eyes and I shifted awkwardly, uncharacteristically self-conscious.

‘Me too,’ I said.

‘Would you idiots get in here?’ Lilah called from the room. I pushed the door open and Lilah’s colleagues followed me inside. ‘Fuck me, you do realise this is a hospital, not a nightclub. Why are you all here at once?’

The disdain in her tone shocked me, but it didn’t seem to faze her visitors one bit.

‘Was Lilah an awful boss?’ I asked suddenly.

‘Oh, God yes.’ Anita said, and we all laughed a little nervously, except Lilah who grimaced.

‘I miss you.’ Bridget neared the bed and tried to take Lilah’s hand. Lilah shook her away and motioned impatiently towards the chair I’d been sitting in.

‘Sit down, Bridge. This isn’t a deathbed farewell you know. You don’t need to weep all over me.’ Lilah’s sharp tone lightened the mood in the room considerably, until she added quietly, ‘Yet.’

‘I have great news, Lilah. We managed to recruit Ann Jenkins; she’s going to start in a few months’ time.’ Alan unbuttoned his jacket as he sat on the end of the bed.

‘Ann?’ Lilah repeated. ‘As a partner?’

‘She’s going to buy in.’

‘That is brilliant, Alan. Congratulations.’

‘I thought you’d approve.’

Lilah glanced at me.

‘She’s a lawyer. A much better one than me. She’ll run the environmental practice.’

I looked at Alan and frowned.

‘Lilah’s job?’

‘It’s not my job anymore,’ Lilah said. ‘Alan has bought me out of the partnership.’

She began a cross-examination of her previous team, enquiring about various cases and staff members, while I stood silently by the door, digesting the news that she’d given up work. After a few minutes I glanced at my watch.

‘I might just… I’ll just duck home and pick up some fresh clothes. Will you be okay, Ly?’

‘Of course I will.’ She smiled at me. The work discussion had animated her, and as I drove home, I thought about that. Of course I could understand why Lilah had given up work, but it was still a surprise and not a pleasant one.

I made it all the way home and back to the hospital before I realised why I was so upset about the news. I was looking for signs that Lilah was fighting, hanging all of my hope on little signs of life. She was maintaining her diet. She’d taken the antibiotics. She seemed genuinely thrilled that I’d found my way back to her. At the same time, almost all of my focus had been on understanding the disease and how we could access a cure. As long as I did my job and found the miracle, and she did her job and kept trying, somehow, surely, she’d be fine.

But Lilah had given up work and sold her partnership. She was finalising her affairs, getting ready to say goodbye. For her, the battle was already lost. I had been so focused on her illness and what it all meant that I hadn’t spared much brain space for the reality that she was actually going to die. I was never going to be ready to let go of Lilah. Not even if she did manage to hold on for a decade or two or three.

Her teammates had left and Lilah had showered while I was gone. She was sitting on the bed drying her hair with a towel. I noticed that her IV had at last been removed.

‘Lilah, you have to go back to work.’

She looked at me blankly.

‘Well, firstly, no I don’t. And secondly, I can’t, even if I wanted to.’

‘Look.’ I sat beside her and took the towel from her, and she spun around so I could finish for her. As I blotted and rubbed her hair, I struggled to form the right words. ‘You need to work. You just have to work. Maybe Alan can give you a few small cases to do from here or from home.’

She was silent and I wasn’t sure she'd heard me. She turned around eventually and took the towel back. Her expression was blank.

‘Lilah?’

She dropped the towel in a heap beside the bed and leant against her pillows, her gaze on mine. Her skinny hand reached up to brush against my cheek.

‘Do you know, Cal, until I met Haruto, I’d never had any interest in environmental law.’

That shocked me, almost winded me actually. I found it hard to imagine Lilah without the green-hippy environmental bits. I knew she’d worked in corporate law at some stage, but I had assumed it was a stepping stone to the real, noble profession she’d always dreamt of, saving the planet and all that. Besides which, I really didn’t want to hear about her dead lover, especially now that I knew how he’d died.

‘I changed my specialty after he died because the environment was his passion, and I felt so guilty that I’d survived and he hadn’t. I felt like I owed it to him to try to make a difference. And the fact is, I came to love it. I’m a hippy at heart even if I didn’t really understand that myself until five or six years ago.’

Her hand dropped to my thigh, and she entangled our fingers.

‘But, Callum, I have HD. Even if I wanted to, I can’t go back to work, and the fact is, I
don’t
want to. When I realised I was getting sick again, once I’d processed the grief of it, a weight was lifted off me. No more obsessively looking for signs that it was back, no more feeling like I’d robbed Haruto somehow of his chance to change the world. I got five years, five wonderful, unexpected years, and I made the most of them for him. But these last days or weeks or months, they’re
mine.’