Me Without You (25 page)

But once again I find myself in a position where I have literally nothing left to lose, and it actually feels good to get this out. The memory will dissolve soon enough, like all of my memories, and it’s cathartic to confront it before it fades away. Maybe I’ll get up the courage to leave this journal for someone, so they could know the things about me that no one has known. My love for Callum. My failure for Haruto.

Time caught up with Dr Charles, just as it has caught up with me. Months ago when I realised that the chorea had returned and my hand was beginning again its godawful dance, I spent days at the farm trying to track him down. With Callum enjoying his supposed holiday around me, I forgot all about my work and began to hunt Dr Charles like a stalker. I know it was crazy, given Haruto’s outcome, but it was an automatic reaction—or maybe just a way to keep myself busy until I figured out what to do about Callum.

I found Dr Charles after a few days, and as soon as I knew his fate, mine was sealed. His real name was Charles Morgan, and he’s serving a life sentence in a Chicago prison. Judging by the news reports, Haruto’s outcome was much more standard than mine.

When I was well, there were times where my brain would get stuck on a mantra which would fuel a frenzy within me.
You got Haruto’s miracle, Lilah
. And I’ve always known it to be true. But it was a one-time-only deal, and it seems only to have delayed the inevitable, given that I’ve wound up in exactly the same place I was destined for all along.

I
stood
outside Lilah’s room and watched her through the doorway. The bed was at a half recline and she was propped up on all sides by pillows. Her flame-red hair was loose and matted, around her shoulders, over the top of her chest.

She was pale, so pale, and above the sheet I could see she was wearing a hospital gown—white skin against white sheets, and then two straps of an ugly green gown. Lilah hated sleeping in clothes, and there was obviously a reason for the attire—but I struggled against an irrational impulse to run in and strip the gown from her, at the very least to reclothe her in something beautiful.

Her hands were over the sheet, and even as she slept, I could see them move sporadically. It wasn’t a constant movement, just the occasional twitch; had I not known, I would have thought she was just dreaming. It was a slightly familiar movement too, and I wondered if I’d seen her doing it back at Gosford and just not registered that it was anything more than an idle habit.

‘Don’t wake her,’ I said as Peta reached for the door. Peta turned back to me and, to my horror, I started to cry. ‘Please, Peta, let me just go for a walk before we go in there.’

I didn’t give her a chance to respond. Instead, I turned and walked as calmly as I could down the hall, back to the elevator we’d rode upon. I took it down to the ground floor and pressed my fists into my eyes in the privacy it offered as it descended.

Lilah did not yet know that Peta had contacted me. In spite of my bravado at the coffee shop, now that I was close to her, I realised I had a choice—a real choice. Now that I knew she was sick, I would have to grieve her again one way or another—but I could choose not to watch her slip away from me, piece by piece, losing the person she had been.

The last thing I needed was more coffee but I ordered one anyway, and I placed a call to the office, explaining that an emergency had arisen and I didn’t know when I’d be back. Then I sat at the table in the cafeteria and watched minutes tick by.

Minutes you could spend with her
, a vicious voice in my mind reminded me. If she was going to progressively lose herself, I needed to spend every second I could with her now, soaking her in, before the disease stole her away.

Or, I could go home. I could go back to my half-renovated apartment and eat a steak and drink some milk and watch silly TV, or work until all hours. I could find ways to fill the emptiness. Staying with Lilah would mean watching the void left by her absence gradually return and ever expand.

Time passed. Tears periodically rained from the corners of my eyes. I noticed strangers staring, but I didn’t move. At one point, an elderly man in a clerical collar came and sat opposite me.

‘Is there anything I can do, son?’

I looked up at him, stared into the faded blue of his wrinkle-framed eyes, and asked, ‘How do you believe in God when the world is so fucked up?’

The priest smiled sadly. ‘You’ve got it backwards. It’s
because
the world is so fucked up that I believe in God.’

I was choking. I shut my eyes. ‘If I had faith at all, today I’d have lost it.’

‘Can I sit with you a while?’

‘You may as well.’

He sat with me for a long time, not saying a word, probably praying I suppose. Eventually he slipped a card onto the table, reached across and squeezed my hand, and then silently left. Shortly after, Peta returned and sat opposite me. She looked at the card on the table and laughed softly.

‘I remember when James was diagnosed. It was such a shock, and I fought. God, how I fought. I dragged that poor man to doctors and specialists and therapists, faith healers, mystical healers, herbalists, naturopaths, kinesiologists, spirit guides…’

She bent the card in two and sat it like a tent on the table.

‘The worst thing was that no one could help. Sure, I could understand that the doctors couldn’t fix it. And I could understand that the various healers each weren’t quite up to it. But what I couldn’t quite grasp was that absolutely
no one
could help. Not even a little bit. Not individually, not collectively, no matter how much I begged or rallied or fought. This was just happening, and there was no force in the universe big enough to even slow it down.’

I reached out and picked up the priest’s card and crushed it into my fist. Peta reached over and enveloped my fist in her hand.

‘If you want to go, I will completely understand. Truly I will, and better than anyone, Callum.’ She was strong. There was a resolve in her face that I envied. ‘I’m so sorry to even put you in this position, but I couldn’t let
her
go without giving you the choice.’

I looked back to the tabletop. It was scratched, worn in one patch right near my coffee cup. The laminate was loose all around the scratch and under my fingernails. How long had I been sitting there, scratching aimlessly, lost in my misery? The disconnect between my body and my consciousness was startling.

Fuck
.

Peta squeezed my hand again. One more glance into those achingly familiar blue eyes, and the choice was made for me. I remembered that moment on the ferry all of those months earlier, where logic tried to intervene and I wondered if Lilah and I were suitably matched, and how my emotions had just quashed that thought like the tiniest of irritants. Here I was coming up against some much stronger logic, and the very same thing was happening.

‘Let me go to the bathroom and clean myself up,’ I said. My voice was strong and I had no idea how. ‘And then we can go back upstairs.’

L
ilah was awake this time
, sitting up in bed, an oxygen tube under her nose and a scowl on her face as she stared down at afternoon tea on the tray before her. As Peta opened the door, I watched Lilah poke at a packet of sweet biscuits as if it was a diseased animal. I felt angry for her, and frustrated—I knew she was so easily pleased with food. They could have tossed her a carrot or a banana and she’d have been content. Why give her long-life biscuits?
Idiots
.

She looked up and our eyes met. A million emotions flickered across her face. Guilt, shame, sadness, grief, misery—

Joy. Relief. Happiness.

‘You are in so much trouble, Peta,’ Lilah whispered, before her face crumpled and she pressed her hands over her mouth. Her speech really had changed. It was thick, as if she was drunk maybe, and just a little stilted.

I ran to the bed and I cradled her like she was a broken bird. There were tears and sobs in the room and I had no idea how many were mine.

‘You shouldn’t have to watch someone die like this if you’ve only had a few months of them at their best. I can’t ask you to be a part of this, Cal. I just can’t.’

‘I don’t care. I just don’t care about what I should or shouldn’t have to do. And I don’t care if you hate me for it. If you have ten good minutes left, I
need
to have them.’

Her face was in my shoulder, the jerking movements of her hands against my back were frightening, but no more than the heaving sobs of her fragile chest. I heard the door close as Peta retreated, heard the sounds of the hospital around us, the steady beeping of Lilah’s heart monitor and the gentle hiss of the oxygen. In the most hostile, alien place in the world, in circumstances so uncomfortable that my worst nightmares couldn’t begin to compete, I found myself at home.

‘Please don’t make me go again, Lilah. We can deal with this together.’ I whispered the words, my mouth against her hair. I breathed in, looking for her unique smell, but the antiseptic sterility of the hospital drowned her out. I was already ready to steal her away from the hospital, back to her home, where she could be herself. ‘Whatever is ahead of you—please let it be ahead of
us
.’

W
e were fragile that day
. The rawness of the knowledge and the wound was too fresh—we just couldn’t speak much. I held her hand and then I fell asleep on the bed with her in my arms. A nurse tried to send me home late into the night and I told her she’d need to physically force me out if she needed me gone. After some negotiation, I allowed them to evict me as far as a stretcher beside Lilah’s bed.

In the morning, the doctor came.

‘Callum, this is Lynn Overly. She’s my neurologist.’ Lilah introduced a surprisingly young woman in a white coat. Lynn had enormous green eyes and a startling halo of white-blonde curls. As tall as me and with the broad shoulders of an Olympic swimmer, she was Amazonian almost, but her strong physical presence was strangely comforting. ‘This is Callum Roberts, my partner.’

Partner
. Oh, how I’d wished for her to label us with something as concrete as that. I didn’t cry when my parents died—but now it seemed every time anyone spoke, I had a sob waiting to burst out of my chest.

‘Nice to meet you, Callum. And you’re looking much better, Lilah. Your chart is markedly improved on yesterday and I understand you finally accepted those antibiotics I’ve been trying to ram down your throat.’ Lynn surveyed the clipboard she’d taken from the end of Lilah’s bed.

‘I feel a lot better. When can I go home?’

Lynn slipped the clipboard back into its holster and pulled up a stool, perching beside Lilah’s thighs.

‘I need to talk to you about that, Lilah. It’s time for a frank chat, and a plan to move forward.’

‘Move forward?’ Lilah’s smile was wry. ‘You found a cure for HD and forgot to tell me?’

The depth of regret on the doctor’s face spoke of someone who held a far closer attachment than her profession would have recommended.

‘I wish that were the case.’ Lynn looked to me. ‘Callum, would you mind going for a walk?’

‘No.’ Lilah interrupted Lynn. ‘If Callum wants to be here now, he needs to hear whatever you have to say.’

‘I’m fine with that, Lilah. I was hoping
you
might have some things to say though.’

‘Lynn, I’ll tell you if you really want to know. I just don’t see how it will help.’

‘Tell her what?’ I prompted quietly to Lilah.

‘How I went into remission.’

‘I know it was something dodgy.’ Lynn’s tone was wry. ‘I just feel that now might be the time for us to swap specifics.’

Words hung in the air, unspoken. They were words which held no form as yet, but which I’d be pulling together as soon as I had some detail.
How do we get you back there to do it again and how soon can we arrange it?

‘I won’t put you in an awkward position, Lynn. Is there any point to this disclosure?’

‘I’ve never heard of a Huntington’s case going into complete remission—let alone for five years. I’m desperately curious, Lilah—but more than that, what they did might give us a clue as to what we can expect next.’

‘There’s no point,’ Lilah sighed, sitting up straighter on the bed. No oxygen tube in her nose today, and her colour was better. I wondered about the doctor’s comments about the antibiotics and if I was responsible for that decision. ‘It was stem-cell therapy. An American doctor did the procedure in a hospital in Mexico, and he is now in jail.’

‘Is that all you know?’

‘Of course not.’ Lilah was annoyed and offended at the question. ‘The neurologist who did the procedure injected pluripotent stem cells into the basal ganglia.’

‘What kind of surgery was it?’

‘Stereotactic.’

‘How many treatments?’

‘Two. I started getting better after the first; the second seemed to send me into immediate remission.’

After a moment, an expression of pure concern settled on Lynn’s face. She looked at the floor, then shook her head.

‘That procedure is ten years away still, Lilah. Maybe more.’

‘I had nothing to lose,’ Lilah shrugged. ‘I had literally nothing to lose.’

‘They injected something into your brain that they told you were stem cells, but it could easily have been toilet water. You’d never have known.’

‘If I died, I died. What did I have to live for? Decades of slow decline? It was worth a shot, and I got five great years out of it, so it paid off.’

‘And…’ Lynn asked the word hesitantly, and then thought better of it. Lilah sighed as she stretched her neck this way and that.

‘Yes, Haruto had the same treatment. I don’t know what went wrong. It was our second treatment, but he hadn’t responded like I had. He never woke from the surgery so I assume the doctor slipped or a mistake was made with his anaesthetic.’

‘Let’s go back to Mexico,’ I said. A sudden flare of hope had been birthed in my gut. ‘We can get a flight as soon as you’re strong again. We can go back to that hospital—maybe there’s another neurologist—’

Lynn waved her hand towards me, politely dismissive.

‘Other than Lilah and Haruto, I can think of seven patients off the top of my head who’ve gone overseas to a country with looser medical regulation, in the hopes of a cure.’

‘So do you have contacts we could use?’

‘You misunderstand me. Out of the seven, five had no improvement, one died, and one other was severely brain damaged. Even Haruto… I assume you know that he came back in a vegetative state. That Lilah happened to find someone who did what he said he was going to, and did it successfully, without damaging her brain during the surgery or leaving her with an infection—well, honestly, it’s nothing short of a miracle. Hell, this isn’t even an exact science as yet, nowhere near it—I’ll bet even if you could get that same neurologist to repeat the procedure he couldn’t replicate these results.’

‘I’m not even entertaining the idea of trying again.’ Lilah was looking directly at me, and when I opened my mouth to protest, she continued with determination. ‘Last time around, I hadn’t come to terms with this. Now, it’s different.’

She squeezed my hand and I knew she was referring to me, but that was just nonsense. I was surely all the more reason for her
to
fight.

‘You can’t give up,’ I said. ‘You just can’t. Even if we just have to hang on for a few years, the procedure might be available safely here. ‘

‘Even if they perfect it and somehow it’s approved that quickly, I don’t have a few years, Cal.’ Lilah’s blue eyes pleaded with me to understand. The pleading didn’t bother me—the complete and utter peace I saw within them did. She really had come to grips with this, and that meant that she’d given up.