A Moment of Grace

by Patrick Dillon

  Early on, we’d hoped recovery might be swift. I think the doctors hoped so too. Nicola was young. She’d pulled through the initial immune system attack, and steroids seemed to have it under control. The aim, long term, was to wean her off oxygen and ask her lungs to work harder as they recovered. There was talk, even, of removing her breathing tube in a day or so.

  It didn’t happen. Recovery was slow. So instead, the doctors proposed a tracheostomy: to cut a tube into her throat for breathing.

  ‘She’ll have her mouth back,’ the doctors explained. ‘But she won’t be able to talk – the tube goes through the voice box.’

  Before the tracheostomy could happen, though, Nicola needed to get stronger. It took two weeks. On the day after she texted me, Tracky likely to be tomorrow, I was nervous all morning, frightened the procedure would be cancelled again. But when I got to the hospital, Nicola smiled at me – really smiled, her mouth free. Her neck was swathed in dressings. I kissed her, very briefly, on the lips. Her eyes said everything.

  The consultant, that week, was inspiring. Energy fizzed around her. She’d decided to take Nicola in hand. After the usual caution at the start of the week, she’d become convinced of her patient’s strength and spirit. She was constantly in and out of the room, adjusting the machine that controlled Nicola’s breathing, quizzing the nurse of the day about her oxygen levels. It would take time – we knew, by now, it would take time. But Nicola could recover, slowly, cautiously – we were sure of it.

  Every night, when I reached the hospital, I got an update. Often I arrived at handover time, just as her nurses huddled over the trolley outside her room, passing on details of meds and observations. Martha or Joe would usually be there, or Anne. But I always insisted that Nicola and I have half an hour to ourselves before she went to sleep.

  It was her favourite time, she wrote on her board. And mine too. We got the nurses to wash and prepare her, change drugs, take obvs. They tiptoed around us, respecting our need for privacy, half-drew the curtain so we could be alone. And then I told her stories about our life together.

  I described sailing up the coast in our boat, anchoring in a creek where the only sound was the lap of water against our dinghy, towed on a rope behind us, and the lonely call of oystercatchers. The sun fell late, and the tide dropped around us, revealing shelves of shining mud where the waterbirds stalked, lifting delicate legs and probing the silt with long beaks. Felixstowe docks cast an orange bloom in the sky behind us. Landwards we could see no lights at all. When evening came the sky darkened against a fringe of grass and reeds. I described everything: the hurricane lamp glowing in the cabin; the call of sea birds across the mudflats. I described the stars when we went into the cockpit last thing at night, and our riding light reflected in the oily water.

  I described an evening taking the bus to Brixton to see a film at the Ritzy; Brixton market afterwards; the bus home. A day in France, lunch on the terrace, and a walk in the afternoon. A party at home, friends’ faces around the table in candlelight. Coming home from a show over Waterloo Bridge, with lights shining from tower blocks and the tide slipping under the arches. They were memories polished and crafted, tidied in the way one might pull weeds from a flowerbed to let the plants grow. The stories were a record of our life’s blissful happiness; of our astonishing luck. Rings on a bed of velvet; jewels brought out not for every day, but for a special occasion. It was our taking stock, though we didn’t yet know it, of the treasure we had amassed together. We had carved our love into so many days, like lovers cutting their initials in the bark of a tree. There was no greed in it, just a deep-rooted sense of our good fortune.

  My voice grew tired. Sometimes I thought Nicola was asleep but, if I stopped, her eyes would open again. I’d carry on: water bubbling in our boat’s wake; a pile of artichokes on a market stall in France. It was our life idealised, I suppose; but there was no fiction in it, just a removal of grit, as an archaeologist might dust earth from a long-buried statue, or a restorer swab layers of varnish from a painting until its colours glowed. In stories, sitting beside Nicola’s bed, we could travel anywhere. The world was going wrong outside; we were a fortnight away from the Brexit vote. It made no difference to us. In our lost world, the valley to which we’d escaped, nothing outside mattered.

  Nicola would be asleep by eight, usually. I went home to cook supper for Martha and Joe. We never stayed up long. I liked to visit Nicola before work, to see how the night had gone. She was always livelier in the mornings, though I couldn’t stay more than half an hour – my early visits were a matron’s dispensation that I didn’t want to abuse. On my way back down the steps I’d call Anne to tell her how Nicola had slept and what the nurse had said.

  Anne always wanted more, of course; we both did. We wanted someone to throw us the lifeline of comfort: She’s doing really well, getting on faster than we expected. She’ll be up in a fortnight … It didn’t happen. The figures winking on her monitor stayed obstinately the same. The machine was still doing most of her breathing for her.

  A microbiologist visited, trying to hunt down the infection that, so her markers indicated, was still there in Nicola’s blood. They’d given her the strongest antibiotic they had – ‘Domestos,’ they joked. It wasn’t strong enough. They tried to wean her off steroids, too: one doctor thought the immune reaction over. But she lurched backwards and we had three bad days when she was weak and confused.

  They wheeled her off for a scan, then the consultant called us into his office.

  ‘I’m afraid I have to warn you how serious the situation is.’

  Joe was beside me, Martha at home. I called Anne afterwards. Nicola’s lungs were worse than ever. They were telling us, again, that they thought she might die. They wanted to raise her sedation, put her to sleep so her lungs could recover. We agreed. Stooping to kiss Nicola’s forehead, I tried to explain. She understood already. For the second time, I felt as if I might be saying goodbye, but couldn’t say so. Martha arrived. We held Nicola’s hands as they turned up the sedatives. I could feel grief choking inside me like a weed growing through the foundations of a building. We couldn’t lose her; Nicola was everything, to all of us. Her eyes were closed and her mouth fell slack. Air hissed in her tube.

  ‘Rest may help,’ the doctor said. ‘It may help.’

  With each decline, each recovery, the three of us felt like steel tempered. Stressed and relaxed; heated, then plunged into the coldest water. I don’t know whether it strengthened or fatigued us. Somehow life went on. We shopped, cooked; I went to work. Martha finished her exams. Joe’s jet lag faded.

  Nicola lay with her eyes closed, as if we were just her dream, everything around her, my face, conjured into existence behind her flickering eyelids. It was June, by now, the 8th or 9th. We sat by her bed; shuffled our chairs around when the nurse needed to reach a screen or swap a syringe. The numbers winked endlessly: blood pressure, oxygen. On the other side of the bed were the racks of drugs that kept her body stable, floating in the quiet dark while her bruised lungs healed, while the oxygen filled her tired, poisoned blood. There was nothing to say or do. Sometimes we talked. At others, I was alone with her. We kept the door half-closed. Outside, voices murmured. In the room there was nothing between us, now, but memories. Her whiteboard lay on the trolley, the pens in rows, lidded. To talk felt like stirring darkness. Sometimes when she was asleep I’d watch her face; the line of her hair, her wide, closed mouth; or sometimes wake up and find her watching me. But she was further away, now, than sleep; a spaceship voyaging away from the earth, our signals to her becoming ever fainter.

  When Nicola was gone, five months after this, we held a celebration at the Roundhouse. Nicola’s friend and boss Marcus had offered it – he wanted to help. They put a plaque on one of the columns. Everything that happens there now – bands, theatre, circus, or kids performing poetry – all that energy, happens under an iron plaque with Nicola’s name on it. It’s better than a gravestone.

  For the c
elebration we invited everyone we could think of, who’d feel her absence and want to mark it. Family and friends poured into the studio where Joe spoke first. He was brilliant: upright and brave, honest, strong. Martha didn’t want to speak, then, but I said a few words, then we drank to Nicola. Upstairs, others were already arriving. They flooded up the great staircase, jammed the landing at the top, talking non-stop – Nicola would have loved to hear them talking. Inside, the Roundhouse crew had set up lights. The dome was filled with music. We’d made a playlist of every song she loved: the tracks she’d danced to at Oxford, our favourite tunes from when we first went out, Nina Simone, BB King; the music that had tied us together as a family, the Felice Brothers, The Low Anthem; bands she’d discovered at the Roundhouse, songs Martha and Joe had introduced us to. We had known, of course, how much Nicola was valued in her world, but not how many would flow into the Roundhouse, filling it with talk and love.

  Nicola’s friend David spoke first – about talking, the root of art. The Roundhouse choir sang, beautifully. Two poets spoke. Marcus, restraining tears, captured the essence of what everyone was feeling; that under that giant dome where art was made, and joy felt, Nicola was there, was with us still.

  Afterwards we stood exhausted at the door, Martha, Joe and I, saying goodbye. We took the tube home with friends. Nicola would have hated grief. Sitting here now, on our last morning in Rome, I can feel it still, grief’s river tugging at my knees.

  Nicola’s breathing recovered, slowly recovered. Her numbers crept upwards again. We were with her when she opened her eyes, drowsily, and looked at me. She seemed unfocused; I don’t know what she saw. She squeezed my hand.

  ‘You’ve done so well,’ the nurse said.

  She looked so tired, but in another day she was writing again, and looking around. They took another scan. It showed no change, but no deterioration either.

  ‘From a transplant point of view,’ the consultant said, ‘she’s doing OK.’

  Like reeling in a kite, we pulled her back to us. It proved again how strong Nicola was. She could walk along death’s riverbank, trail her foot in the water, and still come back.

  Another day and she had made up the lost ground. She smiled, raised her eyebrows. Notebooks, she wrote on the whiteboard. I brought in spiral-bound notebooks and a pen. She scribbled busily, covering page after page. I had to buy more. She chatted, via her notebooks, with the nurses. One of them was getting married. Nicola wanted to know more. Her thirst for life was greater than ever; she sucked it in just as her lungs sucked in oxygen, greedy for air. With the tip of her pen she directed where she wanted photographs moved to.

  The staff were pleased. They stood around her bed, tired. Nicola wrote busily, You should be taking proper breaks. When I went out onto the steps each morning, to call Anne, I had to temper her enthusiasm. There was still a long way to go, I said. It was amazing how she had bounced back but she wasn’t out of danger. I felt as if I was taking treats away from a child. Nicola texted me for the first time in days. I texted hearts, she texted back, x10000000000.

  All the same, I could tell how tired she was. And for the first time since her lungs started to fail, for the first time in our whole year-long journey, Nicola showed signs of anxiety. Sometimes, when I wasn’t there, she panicked. It made her breathing worse; then they had to switch up the oxygen. I was more frightened by her loss of confidence than anything: Nicola had been so strong since the first afternoon, that awful moment, when we met on the corner of Wincott Street after the doctor’s call.

  Reason didn’t help. I said, ‘You’re being so well looked after. There are nurses and doctors all around you. Think of something soothing. Think of Martha and Joe.’

  I knew it was no use; you can’t reach fear. And Nicola was confused, baffled by Fentanyl and the other drugs they poured into her, trying to keep her alive. Perhaps the antibiotics, a thick sediment clogging her blood, contributed to it as well; and the claustrophobia of bed, unmoving; the machines seen from the corner of her eye; the conversations outside, half-heard; the doctors’ unreadable expressions as they scanned her notes; and, most of all, the tube gripping her throat, squeezing her neck. Of course she panicked.

  Are you coming to see me this afternoon? she texted; then followed it up, seconds later, with question marks. We agreed a system. I drew a chart on a laminated board, a column for each day. At the top I wrote the name of the nurse looking after her. That helped her, blurrily, to keep track of time. I wrote who would come to see her and when. I’d agreed with work to go to the hospital Monday, Wednesday and Friday. Anne visited on the other afternoons. Nicola looked at the chart, nodded as far as the tube allowed her. It was a structure of sorts.

  She texted, Battery running v low but good morning and I love you even more today than I have in the last 28 years. Xxxxx. I didn’t know if she meant her phone’s battery, or her own. I texted back, My sweet sweet darling I always told you I’d love you more and more and I do.

  Dear All, I wrote to friends, almost the last message I’d send them,

  I thought you’d want an update, and lots of you have been asking, so it’s good to be able to say that things are looking a lot better now than a fortnight ago. We’re still facing a long recovery process, with quite a stretch in Intensive Care while Nicola stays on the ventilator. And, of course, there are still risks of further infection etc. But she’s back with us, unsedated, feeling very positive & upbeat (as you would expect), and busily scribbling notes on a paper pad, while trying to catch up with all the Intensive Care Unit nurses’ gossip. Full recovery is still in our sights, however far off. The haematology doctors are very upbeat about the transplant.

  Reading it now, I can hear the note of false cheer in it, almost of desperation. But we didn’t despair. We were still clinging to hope.

  I arranged for the Transplant Unit’s counsellor, whom Nicola had met before, to come and see us both. He listened. I hated talking on Nicola’s behalf – I kept apologising, kept checking with her to see if I’d expressed things the way she wanted. Nicola was the patient; she was the one who needed his help. Tired, she wrote on a pad, nodded, listened.

  The next morning she texted, asking me to come. It was a muddled message. I wasn’t sure if she meant to come straightaway, or was confused about what time I’d be there at the end of the day. And by now I was feeling the strain myself. I wondered if I should give up work and just look after Nicola, but she would hate that – or so, at least, I told myself. And since we were both certain she would recover, we needed to keep our lives intact. I sent a long text back, equally garbled, then called the ward to see how she was, and spoke to her nurse. In the end I stayed at work, worrying whether I was doing the right thing or not. I felt guilty – I still feel guilty. I felt selfish for needing work as a rest from the Frank Stansil Unit. Nicola’s recovery could go on for months, I told myself. We had to pace ourselves. The doctors had told us the same thing.

  Nicola texted back, All good. Come when you can. It still didn’t feel right. For the first time in her year of illness, I felt I wasn’t standing shoulder-to-shoulder beside her, but two paces behind, looking at her – as if I couldn’t keep up. We talked when I reached the ward. I talked, she wrote. I suggested leaving my job. Of course not, she wrote firmly. What you’re saying is right. But it still didn’t feel right. What choice did she have but to agree with me? All the same, I knew that I didn’t have the strength to be there every minute, as she was.

  Nicola was stronger next day, busy with texts. I had a meeting in Kent. I texted, Sitting in Tunbridge Wells Council meeting. I’d rather be in Intensive Care. She texted hearts.

  The week’s consultant was brusque but encouraging. She said, ‘In my view, we’re now in a recovery pattern.’

  She was keen to get Nicola up. It took a whole team of nurses to manoeuvre her onto a special chair. She didn’t want them to put her back to bed until I reached the hospital to see her. I cycled as fast as I could, arrived just in time to see her
perched there, queen on a throne, with Joe beside her. He and I went for a cup of tea while they manhandled her back into bed.

  ‘For her,’ the nurse said, ‘that’ll be the equivalent of running a marathon. She’ll be exhausted tomorrow.’

  So she was, but pleased with herself. She did some breathing exercises. She was weaker, perhaps, than the doctors had expected; another scan was ordered. She texted, I’m feeling mentally much better but exhausted.

  The next day, Friday, was the morning after Brexit. I went into the office and found colleagues sitting in stunned silence. Many came from elsewhere in Europe; their world had caved in. I wanted to hurry to the ward and be with Nicola. When I got there, early afternoon, the nurses were standing by her door.

  They greeted me as usual – nothing had changed – but when I went in, I knew something was wrong. Nicola seemed drowsier than before, listless.

  I mentioned it to a nurse, who frowned.

  ‘Her stats haven’t changed. I’ll get a doctor.’

  The doctor examined her but found nothing new. Nicola’s eyes were closed.

  ‘We’ll keep an eye on her,’ he said.

  Looking through texts now I can see the end coming. The blue texts on the right of the printout are mine; hers, in grey, are on the left. Reading through them, I can see the signs leading towards the end: Battery running low … exhausted … The next morning, Saturday, I texted, Hello? The page is empty after that. Nicola never replied.

  When I arrived at the hospital that morning she was half-asleep. A new consultant was there, a burly man, Italian. He looked concerned: the oxygen in Nicola’s blood was dropping. I sat at the end of her bed, trying not to watch the figures decline. Each time the nurse stepped forward to increase the flow, and I heard the whistle of gas in the line, it felt like a small defeat, another withdrawal; a defensive line abandoned. Martha and Joe arrived. Nicola’s eyes fluttered. When she tried to write on her pad, the writing wasn’t hers: it was weak, shapeless. I look at it again sometimes now, leafing through the pages of the notebooks I’ve kept. As the pages turn, the well-formed words begin to melt. By the end she could only manage a scrawl.