Lecretia's Choice

by Matt Vickers

  By November Lecretia was well enough to resume catching the bus home. I was nervous about it, but she insisted. She hated being dependent on others, being dependent on me. For her, the troughs of her illness were temporary inconveniences to be recovered from as quickly as possible so that she could resume her normal life.

  Her independence helped me, too. My career was taking off at Xero. I had restructured the mobile team and expanded the banking team, and was now responsible for the work of over twenty people. I was being called on to speak at company conferences, and to travel overseas to meet with Australian and American banking partners. When I had to travel, friends and family would come and stay with Lecretia. She would insist that she could look after herself, but I knew that wasn’t true. I think she knew it too, because after a short protest she would relent, and she was not someone who would give in easily.

  I’m ashamed to say that these excursions were sometimes welcome breaks. It was tough looking after Lecretia at home on my own, and when I went overseas I had some time to recharge and find my way back to appreciating my wife and loving her in a renewed way, so that when I came home I could be with her completely. It’s true that absence makes the heart grow fonder. I suppose in that respect it’s similar to grief.

  Lecretia wanted to come with me on some of these excursions, as my work took me to places like Sydney or Melbourne or Los Angeles or San Francisco, but I worried about her being alone while I worked. In unfamiliar surroundings she would become hopelessly lost, and incapable of getting the help she needed.

  Nevertheless, I organised with Lecretia’s friend Hilary to meet us in San Francisco while I was on a work trip there. Hilary was based in Bermuda, and the agreement was that we would meet her in San Francisco for a weekend, after which Lecretia would go to Bermuda with Hilary and I would stay in the US for work.

  In San Francisco I took Lecretia to Atelier Crenn, a restaurant holding two Michelin stars, where a single meal cost me more than a week’s salary, but whose chef was an utter artist. Her dishes were the most imaginative I have ever encountered. The menu was a seventeen-line poem. As a diner, Lecretia preferred taste and texture over spectacle, but this was one of the best meals of our lives.

  In Bermuda I found my wife in the picture of health. She had spent most days sunning herself at the beach and enjoying the fresh Bermuda seafood with Hilary and her children.

  Back in New Zealand in August 2013, it was clear that Lecretia’s ability to walk was deteriorating again. The tumour was starting to resist the effects of the chemotherapy. The oncologist insisted that temozolomide was no longer providing any sort of tangible benefit, and that we should not continue with it.

  Despite this, Lecretia decided that after she stopped taking temozolomide, we deserved another holiday, this time in Morocco. I was worried about terrorism—some of the ISIL soldiers in Iraq and Syria had come from Morocco, and had threatened to bring its reactionary brand of fundamentalism home—but Lecretia was fearless. She could no longer read outside work—it took too much effort—but she devoured audiobooks. She would listen to them in bed while she went to sleep. Her two favourite audiobooks were a history of the papacy—a litany of scandal and abuse—and A Concise History of the Middle East, the ‘concise’ part of the title being ironic, as the print version was more than five hundred pages long.

  In listening to this, she built up a more nuanced understanding of Islam and the Middle East and was not worried about visiting Morocco in the slightest.

  We scheduled our flights in early October. Larry and Shirley agreed to join us again. Given our experience in Argentina, we arranged a private tour this time, so we’d have our own driver and all the accommodation would be booked.

  We flew to Casablanca via Abu Dhabi, and landed in the morning. We were driven first to Rabat, the capital of Morocco, about two hours away. Our driver, Namir, was a pleasant man with a receding hairline who wore a black shirt and beige trousers. He immediately saw that Lecretia needed assistance with a few things, such as getting into our SUV. We talked about Morocco and our cultural differences, and he was kind and open with us.

  After a night in Rabat we travelled to Chefchaouen, a beautiful mountain town where all the houses were painted a cool sky blue in honour of the town’s Jewish heritage, as Jews were allowed to settle there after they and the Muslims were expelled from Spain.

  We stayed in a place up on the hillside. Unfortunately it had three flights of stairs, and Lecretia struggled with them. Larry and I took her by the arm as she slowly climbed up or down. Every excursion to the restaurant upstairs or to explore the city below meant negotiating these steps. But when we sat on the rooftop under the clear sky, waiting for dinner, I saw her face light up as the sun shone on the arid hills around us, bathing the deep blue terraced dwellings of the town in light, as the muezzins called out their evening prayers from the minarets and the whole place seemed to bow in worship.

  In Fes we visited the city’s giant medina, or old Arab quarter. It was criss-crossed with narrow alleys and lanes and tunnels, designed to confuse invaders and certainly confusing for a young woman with brain cancer, but it was still a delight for her. We went to a cooking school there and learned to make a tagine: chicken with olives and preserved lemon. I teased Lecretia that the tagine was the poor cousin of the casserole, but she wouldn’t have that. She diligently tasted every tagine at each restaurant as if it were being tried for the first time, mentally taking notes so she might recreate the best possible version of the dish at home.

  We then headed to Erfoud, and took a four-wheel drive out to the Sahara in the late afternoon. We rode camels into the dunes, and looked out over the burnished expanse of sand. I had always wanted to see the Sahara, without really knowing why. What I felt was impermanence, as the wind lifted sand off the crests to rest in the shallows, forming new crests and gullies. We felt very small, but utterly present, alive and together in an alien place. I put my arm around Lecretia and we sat quietly taking it all in. Time is the only thing we truly possess, and even that runs through our fingers like a handful of dust. How grateful I was to be there in that moment, to have found this person I loved, and who loved me.

  We camped that night in the desert. The stars were abundantly clear and the silence absolute. That night, I held Lecretia close, and I slept the best I had ever slept in my life.

  In Marrakesh we stayed at an incredible riad—a traditional Moroccan house—and I fell in love with Arabic architecture. When you live in a riad, your home is truly a sanctuary. They have few exterior windows; instead there is a central courtyard, open to the sky, and all the rooms face into that yard. It really feels like an escape from the outside world.

  At this point, Lecretia’s ability to climb stairs was becoming much more limited. But when we got to the seaside town of Essaouira she wandered around the city, venturing with me down to the ancient docks, where seagulls sprinkled the stones with guano as they circled hungrily.

  That night we dined at a restaurant close to the hotel. After every meal, Lecretia would take a cocktail of pills: Salvestrol, levothyroxine for her thyroid, turmeric, clomipramine, levetiracetam. She would swallow these without complaint, though she would often sit back with her eyes closed and savour what she’d just eaten first, before taking the bitter tablets.

  Our tour finished with lunch at Rick’s Café in Casablanca, where the classic film starring Bogart and Bergman was set. Years earlier, when Lecretia was well, we had watched the film together at an outdoor cinema in a vineyard in Hawkes Bay. I remember she wore a thick blue fleece hoodie, because even though it was summer, it was a cold evening. We would never have dreamt that we would one day be here in Casablanca, eating lunch where Rick and Ilsa had their unrequited reunion before saying goodbye. But nor would we have dreamt of the struggles on staircases, the pills, the tiredness, the confusion and the frustration.

  Inside the Hassan II Mosque in Casablanca, we saw the polished wooden floor and the carpets and the glass windows an
d the retracting ceiling and every surface covered in calligraphy—the words of the prophet Mohammed, and through him, his god. I felt the same feelings as at the Vatican all those years ago, the sense of a warp in the tapestry so great that the knot obscured the truth of its binding.

  Rumi, the Persian poet and Sufi mystic, tells a story about several men in a dark room each touching an elephant and being asked to describe what it is: the man touching the trunk says a waterspout, the man touching the ear says a fan, the man touching the leg says a pillar, the man touching its back says a throne. Each is sure of his convictions.

  Judaism, Christianity, Islam—each the palm of a hand on a different part of God. Which man do you trust when we are all in the dark? How is it that where I am born or who I believe might condemn me? When I look at these holy sites, I see humanity’s desperate yearning for meaning, and how we cleave to the seduction of metaphor in the stories we tell ourselves. How beautiful these stories are, and how amazing that some people find them so seductive they will build lives and empires around them.

  The flight home was long and arduous. Shirley and I walked Lecretia up and down the plane to stretch her legs, and she staggered up the aisles slowly, her left leg clearly less responsive than it had been. Her left arm too was now weak, and she had trouble gripping the edge of the seats as she passed them.

  A few days after we returned, Lecretia went back to work. She was giving advice on a review of New Zealand’s contempt of court legislation. She confessed to me now how difficult she found it: the words on her computer screen and on the pages in front of her were swimming disturbingly.

  We went to her oncologist in November, and Lecretia scheduled her first round of her new chemotherapy, a mix of procarbazine and lomustine, which were older and harsher drugs than temozolomide. She wrote to her friends:

  Hello gorgeous friends,

  I just wanted to reiterate that I am embarking on my new chemo regimen on Monday in a positive frame of mind. The fight is not over!

  I would, however, like each of you to watch the clip of Terry Pratchett in the link below to get a sense of what I may want further down the track.

  I may become active in this area ...

  I love you all so much and could never have got this far without you. You’re my besties!

  L xx

  The link she included was to a lecture given in 2010 by Sir Terry Pratchett, the novelist, assisted by the actor Tony Robinson, called Shaking Hands with Death. In it, Sir Terry describes his struggles with progressive Alzheimer’s, and his experience of being aware of slowly losing his mind. He explores the inevitability of his death and how it is a horror to him, and how, given his values and the way he’d lived, there was a conflict between the way he wished to die and the way he likely would. Through Tony, he illustrates sitting in his garden, listening to music, and taking some modern hemlock to bring himself to a peaceful end.

  Chapter 14

  LECRETIA HAD NOT spoken of her death much with me. She was focused on getting better, and managing her illness, but since Morocco it had come up a little more often. That may have been because the new regimen of procarbazine and lomustine would squash any hope that we could have children. Now she started talking about ifs.

  If she were to die, she wanted me to move on, find someone else, have a family, perhaps move overseas and see more of the world. If she were to die, maybe she would prefer to be cremated rather than buried. If she were to die, she wanted to be interred near her grandparents.

  But all the speculation seemed ridiculous: there was too much she wanted to do. Her contempt of court project wasn’t finished. She hadn’t yet been to India, and had started making inquiries about a guided tour there. She was determined to speak at her mother’s sixtieth birthday in 2016, and to see her beloved sister Kat have a baby.

  Though she was still well, I had resumed taking Lecretia home from work in the afternoons because she couldn’t lift her legs high enough to get on the bus any more. It was heartbreaking to see her stagger across the road to meet me. When she got into the passenger seat, I had to lift her legs into the car. But this was nothing more than an inconvenience for her. It was a long way from a terminal decline.

  And yet the actual manner of Lecretia’s death, whenever it happened, was of concern to her. In late 2014, a member of parliament, Iain Lees-Galloway, was canvassing support for an End of Life Choice bill. Lecretia researched the bill and was supportive of it—it allowed for something called an advance directive, which would allow a person to specify their end-of-life wishes before they reached a point where they were no longer competent to do so. Those wishes could include euthanasia.

  Assisted dying was not legal in New Zealand, and only legal in a few countries. Australia was the first country in the world to have assisted-dying laws, passing them in the Northern Territory in 1995, but the territorial law was overruled at the federal level shortly afterwards. In the US state of Oregon, assisted-dying laws came into effect in 1997, making it legal for a doctor to prescribe life-ending medication to a terminally ill patient with less than six months to live. Oregon has had its laws in place the longest of any jurisdiction in the world.

  Belgium and the Netherlands passed laws allowing assisted dying in 2002, permitting doctors to administer life-ending medication with a patient’s consent. Luxembourg followed in 2008. Several other US states legalised assisted dying from that same year onwards, either through explicit legislation or court rulings.

  Switzerland, interestingly, has never had explicit laws permitting assisted dying, but since 1942 it has only been a crime to help someone commit suicide if your motive is selfish. Private groups have formed there to help people suffering terminal illness or unendurable pain to plan an assisted death: they can arrange access to cooperative doctors and life-ending medications that patients self-administer. Dignitas, perhaps the most famous association of its type, has been in operation in Switzerland since 1998.

  New Zealand is a fairly forward-thinking nation. It was the first country in the world to give women the vote and it has legalised gay marriage and abortion. Freedom of religion is something we have always taken for granted, but it was formally enshrined in our bill of rights in 1990. Holding back on assisted dying seemed to go against New Zealand’s values of fairness, pragmatism and tolerance.

  Lecretia wrote an opinion piece to support her views.

  When I was first diagnosed with brain cancer, I was told I would only have weeks to live unless I had urgent surgery. That was three and a half years ago, when I was thirty-seven years old.

  Over the ensuing years, I have had brain surgery to prune the tumour, as well as radiation therapy and chemotherapy in a bid to control the growth of the tumour. I have recently embarked on a different chemotherapy regimen, and remain very hopeful that this will stave things off for another few years. Ultimately, though, there is only one way my story can end.

  Life is not the same as it was pre-cancer. I am unable to see anything left of centre. The left side of my body does not move very well. I have difficulty walking, typing with my left hand and eating with a knife and fork. I require assistance from my husband to get dressed each morning. I am not allowed to drive. I have lost spatial awareness and get lost easily in new places. I constantly bump into things. My balance has been affected and I have falls like an old woman. My head is scarred and bald in patches from radiation burns. From time to time I have searing headaches. My dreams for the future have been dashed.

  And yet I still have so much to be thankful for. My cognitive ability has not been affected, so I am able to continue working as a senior legal and policy adviser at the Law Commission, albeit with shorter hours, as I tire easily. I am presently the lead adviser on the commission’s review of contempt of court.

  Being near death prompted an outpouring of love and support from friends and family that most people never have the opportunity to experience in their lifetime. I continue to live my life to the fullest, including travelling to exotic
and exciting places, and I have wonderful friends and family to share my precious time with.

  I am not afraid of dying but I am petrified by what may happen to me in the lead-up to my death. My greatest fear is losing my mental faculties and leaving my husband with a mad wife to deal with, like Mr Rochester in Jane Eyre. As far as I’m concerned, if I get to a point where I can no longer recognise or communicate with my husband, then for all intents and purposes I will already be dead. Why string out the process of actually dying? Nor do I wish to be a prisoner in my own body, unable to move and lying in my own excrement. That’s not a dignified way to die!

  Why can’t we make informed choices regarding the timing and manner of our death, so death is as pleasant a process as possible?

  I believe it is a fundamental human right to choose to die when life will become intolerable because of the effects of a terminal illness or debilitating condition. I’m not sure I could actually exercise that right if I had it, but I should at least have the choice.

  I would get that choice if MP Iain Lees-Galloway’s End of Life Choice bill were selected in the members bill ballot and passed by parliament. It would provide individuals with a choice to end their lives and to receive medical assistance to die under certain circumstances. To qualify, the person making the request for assistance to die (‘the applicant’) must be a New Zealand citizen or resident aged eighteen years or over who is mentally competent, as attested by two medical practitioners.

  The applicant must also suffer from either a terminal disease or other medical condition that is likely to end his or her life within twelve months, or an irreversible physical or mental medical condition that, in the applicant’s view, renders his or her life unbearable.

  A request for medical assistance to die must be made in writing, signed by the applicant and confirmed in writing by the applicant after a cooling-off period of at least seven days.