Remember Me, page 24
Then came a very frightening thing. I went out to the airport car park, but I had no idea where I’d left my car. I looked, and looked, and tried to remember, but I had no memory at all of parking the car. The parking-car moment had fallen into a chasm, a treacherous drop-off with no light or time. I thought of looking for cars of a similar colour, and then I experienced a moment of terror—not just fear, not just disquiet: screaming terror. Because I could not remember anything at all about my car!
Just as I thought all was lost, the mist cleared. Hurrah! Of course, it’s a dark blue Toyota, parked on the left, waiting for me in all its glorious familiarity. You can imagine my relief. But that moment was a warning shot across my bow. I’m losing the battle. Time is short. Now is the moment to write this letter.
First, the confession: I’ve been lying to you for over two decades. I’ve allowed you to believe that Leah died a lonely but natural death, and even to hope that she’s still alive somewhere. I’ve lied because she asked me to, but also to protect myself. I think this may be one of the factors that has driven me to dementia. I deserve it.
Where to begin?
Begin with Leah, of course. Leah is at the heart of everything, isn’t she? Her presence had such weight, such brilliance, that everything else seemed to revolve around it.
She would have been about eleven when we first arrived in Tawanui. Your children and mine all ran around your place and ours, they piled on and off your school bus. I remember a strong, dauntless girl riding across the farm, up and down those steep gullies, mustering sheep with her father. Even then she was fearless. Just a child, of course—and I didn’t see her as anything else. That is not my sin.
But time passed. Your family endured the years of Manu’s illness. Leah left home and began her academic career; my unhappy marriage came to an end when Lillian returned to England. One day, visiting Manu, I was surprised to find a poised adult competently looking after her father. Leah was writing up her PhD thesis but had come home during the long summer break, knowing he was nearing the end.
Leah was, of course, extraordinary. Her intellect, her energy, her constant enquiry—these set her apart. She thought with absolute rationality and independence of mind, along with that wry humour which made me laugh more than I ever had (not a high bar, my children might declare; they think me dour). She shared my fascination with the natural world. And so, despite the wide disparity in our ages, we became friends during those final months of Manu’s life. Close friends. But her father was my patient, she was the same age as my own children. At this time, I assure you, we were no more than friends.
Leah began post-doctoral research on the impact of pest control. We wrote, we phoned, we talked, and talked, and talked. I have never felt such a connection with another human being. Indeed, until that time I hadn’t believed such a thing was possible.
One weekend, she invited me to accompany her on a research trip into the Tararua Range. That was when we became more than friends. You’ll think I took advantage of her. You’ll think me grubby, ridiculous, obsessed, going through a midlife crisis. She was in her mid-twenties, I in my late forties. She was still registered as a patient at the Tawanui Health Centre, though she swiftly moved to a GP in Wellington.
I was in love with Leah; how could I not be? She was the love of my life. That’s a cliché. It is also, in this case, the simple truth.
We weren’t ashamed, but we knew that our being together would cause trouble. Leah was afraid I’d be ruined. My involvement with a young woman I’d known from her childhood, who’d been my patient, might destroy both our reputations. We were also very afraid of hurting you, Ira or my own children.
For over a year, we kept our secret. If I had a meeting or conference at the hospital in Palmerston North, Leah would travel up from Wellington to meet me. Sometimes she drove to the western side of the ranges while I set out from here. We’d each walk in and meet in one of the remote huts, or we’d camp. Leah’s research on the Powelliphanta marchanti was wonderful for us, because it brought her home to Tawanui. That was the happiest time of my life.
There were no mobile phones, no texts, the world was not yet in the thrall of email. Leah’s landline was in the kitchen of her shared flat, and she worked in a room with other postgrads. So we wrote real letters and posted them, or left notes for one another. Her favourite note-leaving spot was in our school bus shelter. There’s a nook at one end of the seat, where we jammed much-folded letters. It served us well when Leah was home: dry, hidden and inconspicuous for either of us to nip in there. Her idea, of course. She was far better at the subterfuge than I. She enjoyed it, whereas I really did not.
We made two wonderful trips to the South Island. I drove my car onto the Cook Strait ferry while Leah jumped on as a foot passenger and met me, smiling, in the lounge. We’ve camped on Stewart Island, listening to the shrill of a kiwi. We’ve stayed in a bach in the Nelson Lakes, reading books, watching films and behaving like any other happy couple. Sometimes I worried that she should be looking for a man her own age, who could be a father to her children. When I mentioned this, she was scathing. Age, she said, was an artificial construct and irrelevant to her—and anyway, she would never have children. She was at risk of developing Huntington’s disease and might pass it on to the next generation. I know that Ira feels the same. It was only during this time, 1993, that the hereditary version of the gene responsible for Huntington’s was identified and a reliable test developed. Leah told me about it; she kept up with all scientific developments. But these were very early days, and the test wasn’t yet available in New Zealand.
One afternoon, when tramping in the Ruahines, we made an orienteering mistake. We battled our way along a spur for hours, only to realise that we weren’t at all where we’d thought. We were also running out of daylight. We blundered about until, dropping into a gully, we found ourselves in a magical Eden: a clear stream, a small waterfall, a sheltered spot to bivvy for the night, and some of the richest flora and fauna either of us had ever seen. The little valley rang with birdsong. In the evening we heard and saw long-tailed bats.
In the months that followed, we often returned to our private Eden. It’s far from any trail, but we navigated a route via Whio stream, starting halfway along Biddulph Road. It’s entirely possible that no human foot has ever—to this day—trod in our gully, except for ours. No human foot. Think of that, Raewyn. Think of that.
But our joy involved an awful lot of deception, and we wanted the secrecy to end. We planned to tell you. We talked about marriage. Leah felt it would legitimise things, help to quell the inevitable small-town gossip and judgement. She said she’d make an honest man out of me! We decided to keep our secret just a few months longer, until after Carmen and Richard’s wedding. It would have been unforgivably selfish to spoil their day with our scandal.
Leah also had another secret, one which she hoped would come to nothing. She hid it from me as long as she could.
I weep when I think of those golden days, planning our future, looking forward to a lifetime together. One of my happiest memories is bathed in the heavenly light of a summer sunrise. We’d spent the night by our unnamed stream, and Leah was cooling her feet below the waterfall. I took a photo of her there—I have it still. I was singing aloud. I felt alive!
I remember saying that I’d never been so happy. I was brought up to feel unworthy of happiness, and I was afraid that some terrible hammer must be about to fall. Leah came splashing to kiss me. She declared that no bloody hammer would dare to fall on her! And I believed her. Leah’s buoyancy kept me afloat.
But later that same morning, as we were hiking down the steep stream bed, she fell heavily. Sharp stones caused contusions on her knees and hands. She cursed herself for not looking where she was going, laughed off my offer of first aid and set off faster than ever—leaping from rock to rock. She was like a mountain goat. I had to work hard to keep up.
I didn’t see her again for almost a month. She said she was snowed under: preparing for the new academic year, tackling research grant applications and rewriting her thesis for publication. I was busy with the long-planned extension to the surgery so couldn’t get down to Wellington. Perhaps that’s why I dropped the ball. I noticed a change in her tone when she phoned, a flatness, but put it down to overwork.
But when she next came home, I knew that something was very wrong. The energy and optimism had drained out of her. She arranged to meet me by the bridge where Biddulph Road crosses Whio stream. I was sure she was going to end our relationship, and I wouldn’t have blamed her for one second.
I’ll never forget it. We sat in her car, watching a pair of twittering riflemen in the branches of a kowhai. They were arguing, hopping from one twig to another. Leah called them lucky guys, because they didn’t know whether a predator was creeping up on them. They just lived each moment.
Then, ever so casually, she mentioned that she had ‘a little bit of a worry’.
A little bit of a worry.
Those six words marked the boundary between heaven and hell.
A little bit of a worry.
I stopped breathing. I felt as though my heart had stopped, too. I saw Manu, sitting in his tidy town clothes in my consulting room.
A little bit of a worry.
Leah told me that there was something she’d been keeping from me. She had been noticing unusual things about herself for years, perhaps as many as five years—she couldn’t be sure how long—but they had come on so gradually that she’d been able to minimise and deny, blaming hormonal changes or the pressures of life. She had to work harder and harder to stay at the top of her game academically, but persuaded herself that this was inevitable because the challenges were ever greater. Recently, though, these problems had become impossible to ignore. Her typing had become clumsy; she kept striking the wrong keys. She bumped into things. She dropped things. Most distressing was a loss of mental acuity. ‘I just can’t seem to concentrate anymore,’ she said. ‘The other day, I forgot my own phone number! I feel hopeless, as though I’m going mad, I’m always on edge.’ She described storming into a senior lecturer’s office and ranting at him about the timetable. ‘Fred was shocked. I never behave like that!’
As I listened, my own hands began to shake violently. I gripped them between my knees so that she wouldn’t see my terror. I tried to reassure her. All this could be easily reversible, I said. It might be a virus—had she ever had glandular fever? Could be a thyroid problem, an infection, a vitamin deficiency. Might even be depression. ‘I’ll arrange for you to have some blood tests,’ I told her. ‘We’ll get to the bottom of it. Don’t worry. Don’t worry. Please don’t worry. We are in this together. I will never leave your side.’
When I ran out of reassuring words, she took my shaking hand and held it to her lips.
And then I began to remember things—small things, which I’d stubbornly refused to see. A change in her gait. Movements in her fingers, which I’d shrugged off as fidgeting. An elegant, but odd, circling of her wrist before she used her hand. Bursts of irritation.
Leah knew as much as anyone about the diagnosis and prognosis for Huntington’s. She was young to be showing the symptoms. She hadn’t expected them to appear, if at all, until middle age. But sometimes it does strike the young—and there’s evidence that it tends to progress faster when it does. This is the final proof, if any were needed, that God is an utter, vicious bastard. Or non-existent. Take your pick. Perhaps he is both.
We met later at the surgery, after hours. She wouldn’t see her own doctor in Wellington. She didn’t want mention of Huntington’s on any official health records. I took blood to send to the lab, for what I told them was a routine check, and did a series of basic neurological tests. What I found was so sinister that I was physically sick later on. Her reflexes, fine motor skills, balance and short-term memory showed subtle abnormalities that would ring alarm bells in any patient. And in her toes, the first stirring of the chorea—the involuntary jerks and twists, the St Vitus’ dance which might take over her whole body as the disease progressed. She didn’t even know her feet were twitching. I didn’t mention it.
I would have given my life for this not to be happening. I would have died for Leah, without a second’s hesitation. I had to tell her what she already knew: that her clinical presentation, together with her family history, put Huntington’s high on the list of possible diagnoses. But, I said—but—it was only one possibility. The blood tests might show other conditions, the symptoms might resolve spontaneously. We shouldn’t despair.
She, of course, had lived with this risk since childhood. Sitting on the edge of my examination couch, legs swinging, she said she wouldn’t take the genetic test even if we could arrange it, because it would later be traceable back to her. She wouldn’t see a specialist. There was to be no paper trail whatsoever. Could I do that? If the blood tests indicated that her symptoms had a more benign cause, well, wonderful.
‘But I know what this is,’ she said. ‘I can feel it. I know. And I’m not going the way Dad did.’
That was the start of months of waiting and observing. Months of terror. The blood tests showed nothing reassuring, but still I kept hoping, hoping, hoping for her symptoms to disappear. She carried on with her working life, concealing her problems by sheer force of personality. A stumble and fall down a flight of steps left her covered in bruises, so she invented a collision with a mythical young man. She rarely visited you, Raewyn, because you were the person most likely to recognise the signs. She even announced that she’d somehow managed to have the genetic test, and that it was negative. I couldn’t approve of this lie, but she was implacable: I will not put my mother and brother through it again!
And then, late one night, I had a terrible phone call. It was the only time I ever heard her panic. She didn’t sound like herself at all. She said her mind had seized, statistics meant nothing to her, she couldn’t process information. She was stricken. ‘I’m losing control, I’m dissolving. It’s happening too fast.’
I know how that feels, now that I’m in much the same boat. I understand at last.
I drove straight down to Wellington and arrived in the early hours. Her housemates were away. She’d already lost weight, dark circles around her eyes, her hair unwashed and unkempt. I’d brought medication to take the edge off her anxiety and help her sleep. I persuaded her to lie down, made her warm. I felt as though my heart was being torn out of my body.
That was when she first asked me to help her to die.
She’d been thinking about this for years, she said, and had decided that it would be best if she were simply to disappear. She could live without her strength, even without her dignity, but not without her intellect. Her aim was to die in the place she loved, while protecting me from the slightest possibility of suspicion. She’d already formulated a detailed plan. Leah had overcome one obstacle after another to become a leader in her field, and now one faulty gene was destroying her. I’m not going to let this bastard of a disease win! I’m going to cheat it! Having a clear plan gave her some kind of control over her destiny.
When she outlined it to me, including the part I was to play, I refused point blank. I was horrified.
She simply shrugged. Okay, never mind. She’d manage without me. She felt hanging herself might be the best option, or possibly drowning. She was wondering about the Cook Strait ferry. She lay there, considering the pros and cons of her options as though she were choosing a fabric for some new curtains.
Please believe me, Raewyn, when I promise you that I argued that day, and again, and again. I reminded her that a person can live for decades with Huntington’s, that there was constant research and soon there might be a breakthrough—a cure, or at least an effective treatment. There were clinical trials going on, perhaps she could apply to join one? She was ready for my arguments. She’d kept a close eye on research around the world; she knew it was hopeless in her timeframe. She believed the next generation might have hope, but it was too late for her.
I talked about the terrible pain her plan would cause you and Ira. I urged her to let me tell you what was going on. She forbade it. Her logic was that you’d spent over a decade nursing Manu, and you could not do it again.
‘Raewyn won’t have to,’ I said. ‘Because I will. I want to.’
I imagined an unbearable future without her. I imagined your future, too, and Ira’s, and the insupportable grief that you were soon to face, whatever decision she made. I racked my brains to think of a way to save her.
I had to leave her flat in the morning, because Lillian was due to arrive for Carmen’s wedding. Leah walked out onto the street with me, and we agreed to talk again after the wedding was over. I didn’t want to get into my car. I held on to her, begging her to stay alive.
I think about my behaviour, now that I too am facing neurological decay, and I wonder how I could have been so selfish.
She wrote to me later that same day. I’ve kept her letter. I’ll transcribe some of it here. I want you to see that she really meant it.
You think my plan is heartless. You think I should ‘let nature take its course’.
Felix, put yourself in my shoes. Since I was twelve years old, I’ve known I was at risk. I’ve known this since the day you came to our house and broke the news to my parents. That’s why I’ve been driven. I feel my mortality. Every day of health and strength is priceless. Dad used to say to me, ‘Ehara i te ti—you only live once, don’t waste it.’ He, of all people, knew how true that was.
You and I both know what’s waiting for me. We both watched Dad become skin and bone, a puppet on strings, forced to dance and dance and dance. We both saw him regress into a second infancy. I didn’t want him to leave us, but I wanted his suffering to end. If I could have given him something to make him fall asleep and never wake up, I would have.
