Me Without You (24 page)

I suddenly pictured Lilah, alone in a hospital bed, and I stood, the motion violent with urgency.

‘Where is she?’

‘You need to be sure, Callum. Go away, think about this, do some reading. I can’t have you trying to reconcile with her and then running away when things get ugly.’

‘Things
are
ugly.’ I sounded harsher than I meant to. Peta recoiled a little. ‘I haven’t slept a full night since—’ I took a breath, a hard breath, and finally met the older woman’s eyes. ‘If I can have a few more moments, or days, or weeks even, with Lilah, I will treasure that time far beyond whatever pain I go through watching her get sick. You wouldn’t have come here if you didn’t already know that.’

Peta nodded. She drank the last of her coffee.

‘Let’s go then.’

1
0 March

It’s time.

I've put this off for five years. I never used to put things off. I need to do it now. It’s slipping—I’m slipping, and no one knows the truth. Once I’m gone, it will be gone with me, and that doesn’t seem right.

I used to write in a journal like this so that I could make sure I wasn’t losing the parts of me that mattered most. After I first developed symptoms, I kept a journal so I could track them and note down when I had taken my medication. It evolved into a way of reflecting on my personality and my decisions, a way of ensuring that I was still able to connect with myself. I knew the disease would take my memory. I wanted to make sure I had a way to remember who I once was.

I met Haruto on my first trip to the Huntington’s clinic at Newcastle. His appointment was just before mine, but Lynn was running late, as I now know she almost always is. He was reading a
New Scientist
magazine and like almost everyone else in the waiting room except me, jerking uncontrollably at irregular intervals. I somehow wound up sitting beside him and as the minutes ticked by, every spasmodic movement of every patient felt like it wound the pressure within my chest tighter and tighter, until a somewhat strangled
hello
burst from my lips in his direction and he offered me a sympathetic smile. I think his first words to me might have been, ‘
You’re new to this, huh
?’

Haruto had never known his biological parents. He was abandoned as an infant, bounced around a few foster homes until he was a toddler, and then he somehow found his way into the home of Janice and Ryan Abel, who immediately set about building their lives around him. The fresh start of an adoptive family gave Haruto every opportunity he otherwise might have missed, but the one thing it couldn’t do was restore the defective gene lying dormant in his DNA.

Unlike me, Haruto had no idea he might have Huntington’s, and no time to simultaneously dread and prepare for its onset. He was in his thirties when he started getting sick, and the first signs for him were psychiatric. He was at the absolute top of his game at the time—a high-profile environmentalist who had a number of very public wins under his belt, he was achieving everything he’d always dreamt of. He sank slowly into a deep depression and began systematically alienating his friends and colleagues, until an accidentally helpful psychologist suggested he might make some peace with his adoptive past if he had his DNA analysed to understand at least something of his history. And so he ordered a kit online and had a run-of-the-mill analysis done, some genetic heritage tracing and a routine review of DNA for likely genetic issues.

The DNA analysis confirmed what he’d already suspected—Haruto’s parents were both Japanese. It also flagged that he had the Huntington’s gene, and the game changed overnight. A few easy blood tests later and he finally knew he was a walking time bomb which had actually already gone off.

He was forty-four when I met him, and furiously determined to find a way to beat the disease. I was a decade younger and for every shred of anger he possessed, I held only fear. My hands were beginning to twitch, my speech was already suffering—but worst of all I felt my mind bogging down as if my thoughts had to wade through treacle before they came clear. When I thought about the future, I saw a terrifying hurricane of uncertainty.

Not so for Haruto. He had a master’s degree in environmental science and knew
stuff
about genetics and stem cells. He seemed to have spent years researching breakthroughs in rare genetic diseases and he was absolutely, positively certain that there was a way to beat this. He just had to convince Lynn to try something experimental—and if he couldn’t, he was going to go around her.

I latched onto him like a parasite. He went in for his appointment, and when he emerged, I slipped him my business card and all but begged him to call me. My appointment that day with Lynn was futile as all of my future ones would seem to be—but Haruto called me that night, and we met for coffee, and over the next few weeks and months somehow wound up living together. He lived in a shoebox in the CBD and the walls were lined with journal articles and post-it notes of ideas and email addresses. Our bathroom cabinet was full of medication.

Haruto was something of a household name by then. He had been active in the environmental scene for a long time—a passion he’d inherited by osmosis from Janice and Ryan. They did crazy things like chain themselves to trees in rainforests with him in tow while they raised him, and their passion had left an indelible mark. He’d worked for worldwide environmental organisations, campaigning to save whales and bees and patches of foliage other people saw no value in.

By the time I met him, though, the only passion he had left was to save himself. He was living off savings initially, but before long I was supporting him financially. I didn’t care—I was working in commercial law and I could afford it—why bother saving now anyway? Besides which, it was almost like we were trading precious commodities. I paid his mortgage and he gave me hope.

He found Dr Charles’ website after countless dead ends, people who didn’t seem to have the science to back up their claims of a cure. What Haruto was looking for was a clinic and a neurologist who would attempt a stem-cell therapy that was illegal in just about every country. Thousands of patients with terminal illnesses do that same desperate search for a lifeline every day, but unlike most desperate patients seeking a back-alley service, Haruto knew his stuff. He sent Dr Charles a list of questions and when the answers were all satisfactory, he interviewed him several times via Skype. And then he turned to me one night and announced that I needed to sell some shares and take time off work.

Janice and Ryan begged us not to go. Ryan had great hopes that if we continued the regime prescribed to us by Lynn and the Huntington’s clinic, we would have years, maybe decades, before the disease stole away our quality of life. Who knew what could happen in that timeframe? It was a slow decline ahead of us both, plenty of time for opportunities to arise for clinical trials. Maybe someone would even stumble across a cure. Janice, understandably, just wanted Haruto under her wing. She adored him, and I think she would have contentedly nursed him at home right to the end if he’d allowed her.

I remember feeling sick to my stomach the day I went in to tell Alan I was going to take a year away. I hadn’t told him about the Huntington’s, but he knew I was sick.
Everyone
knew I was sick. My work was slipping, and although I knew it, there didn’t seem to be a damned thing I could do about it. I was no longer arguing in court because not only could I not handle the pace of thought required; my speech was thick and when I was tired, words only came in waves, with long pauses in between. Most insulting of all to me somehow was I was beginning to lose the feeling in my feet, and I’d shifted from wearing sky-high stilettos to ballet flats just to maintain my balance. Alan had been concerned, but supportive, even when I refused to tell him what was wrong. The day I finally took leave he shocked me by embracing me as I went to leave his office.

The clinic was in Mexico. It was booked out for months though, and Haruto and I made the most of the time before we could be treated. We stopped taking our medication and we travelled, criss-crossing over Asia and Europe and finally stumbling our way into Central America.

I had totally lost fine feeling in my feet by the time we flew into Mexico. So, I could still walk, but I couldn’t manage uneven terrain at all. There we were—me, hopelessly clumsy and blindly following Haruto, who was suffering less physically but really deteriorating mentally. In any ordinary morning he might swing from euphoric to violently angry and all the way back again, sometimes without any warning at all. His short-term memory was still reasonable, but his long-term memory was terrible—at one point he argued black-and-blue with me that we lived in Perth, not Sydney. I’d lay awake at night and wonder if I had let him lead me all over the world based on a delusion that Dr Charles could cure us, but even if I had, I had nothing else to live for, so I figured that I may as well see it through.

Dr Charles was American. He lived in Chicago and travelled to Mexico only a few times a year to perform the stem-cell treatment. We would never know his real name.
Just call me Dr Charles.
His stem-cell patients never saw his Chicago clinic, and he never referred his Chicago patients to Mexico—it was his way of protecting his reputation back home.

Although he’d impressed Haruto, the first time we met him, I knew we’d made a terrible mistake. He was like a late-night infomercial up close, all bad spray tan and artificially white teeth framed in a collagen-plumped mouth. And after our initial greeting, Dr Charles just took over, with an endless spiel of pie-in-the-sky promises and nonsense statistics. Haruto, for all of his smarts and caution back in Sydney, now lapped the gold-plated promises up. The clever scientific questions via email had disintegrated into naivety. I remember watching the excitement dawning on his face when Dr Charles spoke, even though with absolutely no scientific training to that point, I could easily see through the unlikely guarantees and the overtly simplified science he was pitching us.

I went ahead anyway. On some level, maybe I hoped the supposed cure would kill me.

Haruto had the first treatment. They harvested cells from our skin and conducted an experimental induction process. Dr Charles told us he might win a Nobel Prize one day for his process, but he also assured us the medical establishment was going to take some convincing and widespread use of his groundbreaking technique was years away. It took weeks before the cells were ready, and then they took Haruto into an operating theatre. I met him hours later in recovery, where he was resting comfortably, his condition unchanged except that he now had a tiny hole in his skull. The procedure was, I suppose, as non-invasive as brain surgery could possibly be, and they hadn’t even shaved his head, just a tiny patch around the little wound.

I had my first treatment the next day. I remember rising from the anaesthetic sleep. Before the mild pain in my head or the grogginess or the IV in my arm registered, I felt a tidal wave of disappointment. I had been so sure I would die.

And when the clinic cleared us both of infection, we went back to our hotel, and we waited.

At first, I thought it was just my imagination—perhaps more likely wishful thinking—that the sensations in my feet might be returning. Haruto was also sure his symptoms were easing too, but I couldn’t see any evidence of it. There was a tension that simmered just below the surface with Haruto, and increasingly it would bubble out of him in the form of frustrated outbursts and irrational ranting. I remember more than once sneaking out of the hotel while he was in an overwhelming, unseeing rage, and walking around the streets of Mexico City, waiting for the storm to pass. Early in our relationship I’d console him, or reason with him, or try to distract him—but by the time we were in Mexico, there was no way to reach him when the fury rose. His anger and confusion were an ever-widening gap between us, and my only option was to avoid him until he found his centre again.

When he went for his follow-up treatment a month later, I wasn’t at all surprised that his assessment showed further degeneration rather than improvement. But mine… somehow,
mine
showed a marked improvement. My cognitive function really was returning, I was gradually regaining the sensation in my feet, and the twitching in my hands had all but stopped.

Dr Charles was excited, very excited. He promised Haruto that his improvement was only a treatment or two away and recommended follow-up treatments for me too.

We were to have the second treatment on the same day, and we were first and second on the theatre list. Now when I held Haruto’s hand, mine was the steadying force, and he was looking at me like he could drink the improvement right out of me and into himself. He had been my hope, and now, somehow, I was his. He had volunteered to go first again, but the nurse called my name, and so we exchanged a shrug and in I went.

When I woke up in recovery, I expected Haruto to be next to me. He wasn’t, and time passed, and he didn’t appear. None of the nurses spoke English, and Dr Charles was nowhere to be seen, so it was days before I found out what had happened.

We knew the risks. Even Haruto, for all of his blind optimism, knew we had placed our lives in the hands of a doctor who was essentially treating us with a combination of theory and luck. Maybe the luck ran out, because when Haruto was having his second treatment, something went horribly wrong. I never saw Dr Charles again, and I never found out exactly what happened, but when I finally found Haruto in the intensive care unit of another hospital several days later, he was drooling on his pillow and he didn’t react to my presence.

The cruellest irony was that, overnight, the last of the feeling in my feet was back. While I tried to figure out how the fuck to get Haruto some help, I paced on the gravel outside of the hospital and the sharpness of the rocks in my soft skin was more mystical than sex.

Eventually I made up a story about a car accident and managed to get him medevacked back to Sydney and under Lynn’s care. When the doctor overseeing his transport asked me why Haruto had wounds on his skull from surgery, I feigned confusion and said the hospital had operated when they were treating his concussion.

Lynn wasn’t so easily fooled though, and neither was Mum. At first, they hammered me for answers. It was impossible that my symptoms had disappeared—just as it was impossible to her that Haruto’s brain injury could possibly have been caused by a car accident. My hair was shorter then, but it didn’t matter; I easily hid the tiny scar with a ponytail. I never told them, and in spite of journaling just about every other thought that crossed my mind after Haruto’s accident, and even more so after his death, I’ve never written this down before. I was genuinely scared that if I put this on paper, it would suddenly become real, and the guilt would destroy me.