Lecretia's Choice

by Matt Vickers

  In the emergency department I found Lecretia sitting up in bed. She turned to me as I entered the room.

  ‘Hello,’ she said, groggily.

  ‘What happened?’

  ‘I think I fell,’ she said. She was blinking slowly and looked unsteady.

  A doctor arrived to examine her. The doctor was brisk and efficient. He looked at her and examined her and asked her how she was doing.

  ‘Do you think you might have had a seizure?’ he asked.

  ‘I don’t know,’ she said.

  ‘Are you on any anti-seizure medication?’

  She looked confused.

  ‘No,’ I said, and I rattled off the drugs that I knew she was taking.

  And then, as if on cue, her eyes closed and her hands rose in front of her and her mouth opened and her head flew back and she began trembling. It was a strange sight—she was clearly having a seizure, but there was also the appearance of ecstasy or revelation, as though some part of her had unhooked from its mooring and drifted free, and her body was floundering for purchase. The doctor held her shoulders as she shook, and he instructed the nurse to bring some drug to calm her, which was injected into her arm until the trembling stopped. She opened her eyes, drowsy.

  ‘It looks like you just had another seizure, Lecretia,’ said the doctor.

  ‘Did I?’ said Lecretia.

  ‘Yes. I think we’ll do a scan to check there are no problems in your brain, and then we’ll need to prescribe you some anti-seizure medication, so that this doesn’t happen again.’

  Lecretia stayed in the hospital for two days after her fall. Her skull had developed a bump where she had hit it. I could feel the ridge where the skull plate had been cut, one side slightly raised, one slightly depressed, like a mountain range. The fall had knocked her around quite a bit, but she was desperate to get home. She hated being in hospital. They only let her out on the condition that Shirley would look after her, as she couldn’t walk unaided or even talk properly. Lecretia didn’t tell the doctors she was feeling nauseous as she was worried they would keep her in the hospital.

  When she was discharged the doctors said that oncology would call, as they needed to confirm all the prescriptions she was taking were compatible. With the anti-seizure medication she was now taking a huge number of pills every day, including drugs to counteract the effects of other drugs—steroids, an anti-nausea medication and laxatives to deal with the constipating effects of the steroids. The oncology clinic never called, so Shirley followed up, as Lecretia was deteriorating. They told her to come in. We found out that when she fell she had landed on the very part of her skull that had been operated on, and the scans revealed she’d had a brain bleed. Her dosages were adjusted, and the steroids increased to reduce the swelling.

  Lecretia spent a few days adjusting to the new regimen. The higher dosage of steroids was difficult for her to cope with, and the new anti-seizure medication didn’t immediately agree with her—but although she was barely able to walk and felt like throwing up, she insisted that she wanted to get back to work. I think Lecretia, so defined by her career as a lawyer, saw work as something normal that she could latch on to. If she was well enough to work, she was in control of the situation. She was doing something for others. She dreaded the idea of helplessness. It just wasn’t who she was.

  From August 2011, things steadily improved. Lecretia’s energy slowly returned, and her hair started to grow again. She wasn’t having trouble getting around, she could cook and swim and dance, and she seemed like she was almost back to normal, except for that persistent blindness on her left side. But I was still worried. One night, after a couple of beers, I sat down at the computer and started writing.

  I don’t know what’s going to happen to Lecretia. I am so afraid. She is so beautiful and kind and this, of course, was not how we imagined things would be. I know there are statistics, and chance, and some people win the lottery and others get this. We all get something. No one has a perfect run. Or maybe a few do. But it’s clear now that we are not those people. We will experience life as a fractured promise. We’re the one per cent. And there is always one per cent of something, and it is not always good. History will forget us, there will be no children to research our lives, to tell our stories in their classrooms. We’re not destined to be ancestors of anything. I find that the hardest to deal with. I cannot bear the thought that my wife will be forgotten, that she will have no children to carry her spirit, to bear a little piece of who she is, so that a part of her continues to live on. If she dies, and let’s be frank, that is on the cards, she will be lost forever, a memory for me, and for her family and friends, but then, after we all die, nothing: just a name. I suppose that will happen to most of us—it does happen to most of us. We haven’t figured this out yet, have we? Some of us invent stories, or accept stories, but in our heart of hearts we know that there is an end, and it is abrupt and final, and that the divide between this and that is cold and infinite. Even people who believe in an afterlife cry at funerals.

  I am worried about me, but mostly I am worried about her. I am awestruck by her bravery and how she is facing this. And even when she cries, terrified and bearing the full weight of her circumstance, it is brief, over in less than an hour, and she is sunny and cheerful again. But I know that she sits in her office caught up in her thoughts, and I know that she lies awake in bed at night while I am sleeping, and I know that though she would never want pity she must struggle with this. There’s that great existential question, isn’t there: if you were going to die tomorrow, what would you do? And the thing is, you probably wouldn’t do anything any different, or anything more than you normally do, because the spectre of death keeps you from seizing the day you are expected to seize: you would spend your last day mourning the ones you would never have. I wonder if people reaching a certain age, suddenly aware of their decrepitude and deterioration, are filled with the same thoughts.

  We went on with our everyday lives, but even in the most ordinary activities there were subtle differences. Lecretia had always loved to cook, and was an expert in the kitchen, but issues with her short-term memory started to get in the way. One night she started making dinner, but she’d forgotten to take the steaks out of the freezer, so we had to defrost them in the microwave.

  ‘It’s okay, Lecretia.’

  ‘It’s not okay. How could I be so stupid?’

  ‘You just forgot, that’s all.’

  ‘I forget too many things now.’

  I helped her finish dinner by making the kumara mash and pepper sauce. It was delicious. We sat at the table and ate together, in front of her room divider, on which she had arranged photographs from her past and our shared past. I looked at those photographs and she was still the same person. She had the same dreams, the same features—she was simply diminished. She did seem smaller. I found myself feeling so protective towards her.

  After dinner I took a look at her head. Her scalp was still dry and cracked. Her hair was growing, but only on one side of her head, and at the back. The photographs of her with long hair now looked strange. I rubbed in the aloe vera, but I’m not sure it helped. Her hair seemed to absorb it, and the skin was so dry now that it appeared to have completely lifted away from the scalp, forming a bronze incrustation. It came away as large brown scabs, the size of coins, and it felt thick and waxy.

  Soon after this she had lunch with her friend Carolyn. Carolyn was twenty weeks pregnant. Lecretia had given her advice about using the clinic in San Diego. They made it, we didn’t. I asked Lecretia whether she was jealous. ‘Yes,’ she said, without hesitation.

  Despite everything, Lecretia still wanted a child. I was not so certain any more. My logic was that a child would make life harder than it already was. I would end up with two dependants, and if the worst should happen, I would be a solo parent. I didn’t want that. My logic, selfishly, was that if I were thrown back into a situation of having to find another partner, a child would limit my chances and my choices
. And there was the child to think of too. I had been a child of divorce and loss; I came from a broken family. Could I inflict that on someone else, knowingly?

  But I really didn’t know anything for sure. If Lecretia wanted to be a mother, and I wanted to be a father, then maybe we should continue trying. If life made things difficult, we would deal with it. The child would be surrounded by a loving family. Children are resilient and cope with change better than adults do.

  Our San Diego plans had been to use an anonymous donor, but now I thought, well, if Lecretia dies, maybe it would be better if the donor wasn’t anonymous, so the child could still find out where it came from, so it could still have a sense of belonging and of its place in the world.

  I discussed this with Lecretia one night. ‘If the worst should happen,’ I said, ‘at least the child would still have a mother.’

  Lecretia burst into tears. It was the worst thing I could have said, and I felt so bad. She already knew that I thought using a donor egg was somehow a lesser route, not true motherhood, but it was a reminder of my feelings, and it hurt her, and I hated to hurt her.

  After Christmas 2011, things settled into a normal rhythm. Lecretia kept working at the Law Commission, and I kept working at Xero. She caught the bus at 3 pm with the school kids. I was promoted to a management role, leading the teams that built our mobile products and handled integration with banks. Xero was going gangbusters and was on the cusp of becoming a global force. The share price was steadily climbing. I fantasised about it getting so high I could sell down my holding and never have to work again. I wanted to spend time with Lecretia—I didn’t want either of us to have to work.

  But Lecretia felt differently. Her role at the Law Commission gave her purpose. She loved going into the office each day and she retained the respect of her colleagues. She was consumed by the work she was doing on the review of the Judicature Act 1908. When I raised the idea of her stopping work, her response was brief.

  ‘What would I do all day?’

  So we got on with the business of living. We enrolled in Spanish classes. Our theory was that learning a language might help Lecretia’s brain heal. She excelled in the classes, though she hated reading off the whiteboard, or having to write on it, because she inevitably missed things. But she wasn’t discouraged, and we practised at home at nights, talking in Spanish to one another.

  Lecretia decided that she wanted to do dancing lessons, too, so we enrolled in tango classes. Her left leg wasn’t behaving but she pushed through it, swinging her hip slightly to throw her leg forward. She loved dancing tango with me, and was able to pick up the steps, but she wasn’t so much of a fan of dancing with others. When we rotated partners in our small group, she always came back into my arms with relief.

  After a year of Spanish and a few months of tango, Lecretia proposed that we take a trip to Argentina together. The idea of travelling alone with Lecretia in a foreign country worried me somewhat, as she could be unsteady on her feet and got lost easily. A month earlier she’d fallen asleep on the bus home.

  ‘Last stop,’ said the driver, waking her.

  ‘Where am I?’ she asked. It was dark outside.

  ‘You’re at the last stop. You need to get off.’

  ‘I don’t know where I am.’

  ‘Not my problem,’ said the driver. ‘I need to take the bus back to the depot and you can’t be on it.’

  Lecretia got off the bus, looking for her bearings. She pulled out her phone and it was flat. She cried tears of frustration and started walking in the direction the bus had come from. After ten minutes, she found herself in a place she recognised and was able to negotiate her way home.

  Even the familiar was becoming unfamiliar. Lecretia loved doing the grocery shopping, but recently she’d started buying things we already had, or she’d get stuck in a single aisle, staring at the shelves in confusion because someone had moved the sauces section two rows over. When her favourite supermarket changed its layout it was a nightmare for her—she couldn’t find anything. Our weekly trips to the supermarket became hugely frustrating for me, because it took so long, and for her, because of her disorientation. In the end, I told her it would be better if I went alone armed with lists of what she wanted. She wrote these out dutifully, but was miffed, and I would work my way through the kitchen crossing out half the items that we’d already stocked up on.

  The thought of losing her in Argentina and her being unable to find her way back to the hotel on her own was frightening, so I asked Larry and Shirley to join us. They agreed and we booked our flights.

  I think Lecretia was worried about her condition deteriorating, though, because she requested a scan shortly before we left. We flew out before the results arrived. We’d have to wait until our return to see whether anything had changed.

  Chapter 13

  BUENOS AIRES WAS a faded beauty of a city. The sons and daughters of Spanish and Italian migrants modelled their buildings on the decorous facades of their favourite Mediterranean promenades. In the prosperous suburbs of Recoleta and Palermo, gargoyles loomed from apartment buildings, and in Monserrat, a spectacular building, the Palacio Barolo, inspired by Dante’s Divine Comedy, dominated the skyline. Huge boulevards swept through the city, the widest being Avenida 9 de Julio, as if the men who made it had come from small European cities and now found themselves blessed with the broadest canvas they could imagine.

  For our seventh wedding anniversary, we found a restaurant we liked a few blocks away from our hotel. Larry and Shirley accompanied us for dinner. We drank wine from Mendoza and ate complex and clever dishes and practised our Spanish with the waiter.

  But this sprawling city was hard work for Lecretia. She walked slowly but without complaint, not letting on how tough it was for her. We visited El Ateneo Grand Splendid, a former opera house and one of the most beautiful bookshops in the world. Lecretia had barely had time to take in the sight before her legs fell from under her and she collapsed to the floor in exhaustion and wouldn’t be moved.

  When she had her breath back, I helped her up and held her by the arm as we left the store, and the four of us returned to the hotel via taxi.

  We travelled to Bariloche, a beautiful town near the Andes, where dozens of picture-perfect lakes reflected the surrounding mountains. A short drive from the town, there was a chairlift taking you up to the summit of Cerro Campanario, an elevated peak with a full panorama of the area. We approached the chairlift.

  ‘I’m not going on that,’ said Lecretia.

  ‘It’s a long way to walk,’ I said.

  ‘I can do it,’ she insisted.

  We climbed over two hundred metres to the summit, up a narrow trail of switchbacks. Lecretia pushed herself hard, ignoring the tingling in her limbs. She climbed all the way to the top. The summit offered views of the vast Andes topped with snow, and the surrounding lakes, sparkling in the sun.

  In Mendoza we stayed in a beautiful bed and breakfast outside the city, where we drank red wine and ate empanadas at sunset. Lecretia’s stamina was proving variable. She wandered the city of Salta without complaint. When we visited the salt flats north of Jujuy near the Bolivian border, she had trouble breathing due to the elevation. But she pushed through.

  Our last stop before returning to Buenos Aires was the trip’s highlight—a visit to the Iguazú Falls on the border with Brazil and Paraguay. We stayed at a hotel in the national park where the falls were visible in the distance and had two magical days exploring their majesty.

  Back in New Zealand, I sat with Lecretia and showed her the photos I’d taken. The pictures of her face worried her. The left corner of her mouth had begun to droop slightly, resulting in what she called a crooked smile. It was an effect you sometimes saw in people with Bell’s palsy. I was surprised I hadn’t noticed it.

  Walking was becoming more difficult. She was losing sensation in her left foot and ankle, which refused to bend, and needed a walking stick. She was back at work, but it was getting harder for h
er. Changes in technology—a new payroll system or an operating system update—would cause her stress. There was also the issue of her eyesight—she would often miss the first column of words on a page, or the first couple of words after a line break, rendering whatever she was reading nonsensical.

  A few weeks after we returned, we received the results of the scans taken before Argentina. They suggested that Lecretia’s tumour was beginning to grow again.

  It was time to move on to the next treatment. Temozolomide was available but would be very expensive. But it turned out Merck, the pharmaceutical company, had a stockpile sitting in a warehouse unused. The temozolomide was supplied to Lecretia compassionately, at no cost, and to several other cancer patients besides. I was filled with a huge amount of gratitude for Merck.

  Lecretia began taking temozolomide in May, less than a month after we had returned from Argentina, but it didn’t arrest her decline immediately. We added clomipramine, a drug that had been shown to reduce the size of tumours in mice, and Salvestrol, a plant extract that some believed had anti-cancer properties. Neither drug had significant side effects so Lecretia had nothing to lose by taking them.

  She was still insisting on getting herself to and from work alone, but after a couple of close calls, I organised to leave work at 3 pm, drive to her office and pick her up. I’d log into work from home, finishing up at around 6.30 or 7 pm, when I’d cook dinner if Lecretia hadn’t managed to do so. It was a busy time.

  After a couple of months, however, the combination of drugs that Lecretia was taking began to kick in, and her movement improved. She stopped using the walking stick. She was brighter. She started to go to work on her own again. In October 2013 we travelled to Queenstown together, and stayed at the fanciest hotel we could find, right on the lakefront, and we went to beautiful restaurants. Lecretia watched as I experienced the luge, and when I did a bungy jump from the Kawarau River Bridge.