The Art of Not Falling Apart

by Christina Patterson

  It can be a vicious circle. You’re upset, or stressed, or reeling from a loss and your skin explodes in big red lumps. And then you have to chair a public event with a face covered in big red lumps. Show me someone who can do that with the calm of the Buddhist monk who tried to teach me mindfulness and I’ll show you someone who’s on Valium.

  My friend Claire and I were working together when we first bonded over our battles with our lumps and bumps. Hers started, she told me, the summer she was fourteen. Before she broke up for the summer holiday, she had ‘a few teenage spots’. When she went back to school at the end of it, people came up to her and said, “Oh my God, what happened to your face?” The boys in her class called her Pizza Face and Gangrene. People started treating her differently. ‘I think they thought I wasn’t very bright,’ she said. ‘It’s as if somehow by being ugly you failed on every single level.’

  Like me, Claire was on semi-permanent antibiotics. Like me, she plastered her face with fierce creams. One day, when she ran out of antibiotics, she walked ten miles from her village to the GP surgery in the nearest town. Another time, when the surgery was closed, she banged on the door until someone opened it up. ‘I put neat Dettol on my face,’ she said, ‘which gave me these terrible brown marks. I sat in the sun until I got sunburnt. I thought at least if my face is red because it’s sunburnt you wouldn’t be able to see the spots so much.’

  She left parties before the lights came on. ‘I always felt,’ she explained, ‘I had to be seen in the dark. I thought nobody would ever want to go out with me. I would really hate it if anyone said they wanted to meet in a place where I knew the lighting was harsh. I would spend the whole time looking at my feet, not meeting their eye.’ I nodded as I poured us each another glass of wine and told her that I’d sometimes bolted at the end of a date, just to avoid the strip light of a Tube. ‘Right up until my early thirties,’ she said, ‘I was constantly worrying about my face.’

  When Claire realized that the acne wasn’t just going to go away, she was put on antidepressants. She spent most of her adolescence on antidepressants. This is quite common. A fifth of acne sufferers, according to a recent study, have thought about suicide. ‘I wonder sometimes,’ she said, ‘if that sense of being out of control has been one of the reasons I’m so anxious. I felt quite helpless. I panic a bit when I get that feeling now.’

  Well, you do panic when you feel helpless. And it’s not all that weird to panic if your face looks like something from a medical textbook. Or if you can’t walk. I could practically have sent a child to Eton on what I wasted on treatments for my acne and the pain in my legs. The nutritionists. The homeopaths. The hypnotherapy. The cranial osteopathy. The physiotherapy. The psychotherapy. The weird machines I was wired up to that were meant to measure energy patterns. The reiki. The acupuncture at Waterloo. The acupuncture in Soho. The Chinese herbalists. The shiatsu. The cognitive analytic therapy. The neurologist. The pain specialist. I wouldn’t have done any of this, of course, if the drugs the doctors had given me had worked. But they didn’t. The Verve were right. The drugs often don’t work. I will tell you later what did.

  Anna was twenty-two when she first had trouble walking. She was having difficulty breathing after a run, went into hospital with chest pain, and was told she had a ‘massive virus’. When she left hospital two weeks later, her legs kept giving way. It was a few weeks after that, on an outpatients visit at her local hospital, that she found out what it was. ‘My mum was outside in the corridor,’ she told me, ‘and I was behind the curtain. The neurologist was on the other side. I was pulling up my jeans and he said, “You’ve got MS.”’

  I know Anna through a friend and also through bits of my work. I’ve sometimes noticed that she looks a bit uncomfortable if she’s standing up for a long time. At one party, I saw her laughing it off with a fellow guest and saying she had a bad back. It was only recently that she told me that her back is fine, but she doesn’t want people to know she has MS. Whenever I’ve met her, she has always seemed cheerful, so I wanted to find out how she manages to handle such a serious disease with such good humour and grace.

  Anna was in her last year at university when she was diagnosed. She loved clubbing and was ‘dancing all the time’. Suddenly, she couldn’t dance. She couldn’t run. She could barely walk. She was due to sit her finals, but had to put them off for a year. ‘Nobody had warned me about the tiredness,’ she told me over a bowl of spaghetti near her office. ‘I couldn’t really study for more than an hour at a time and was used to putting in an eighteen-hour day.’

  She lost a year and missed graduating with her friends. But they were still a big part of what got her through. ‘There was a group of lads,’ she said, ‘who basically had a party house. They were immensely kind and looked out for me. They let me live with them, rent-free, for months. It’s really interesting where kindness emerges, often from the least likely people. I can think of a couple of cards that some really laddish lads on my course sent me. They were a bit rude, but there was so much sentiment in there as well. They came round with a load of weed for me!’

  Not everyone hit the right note. ‘Some of the letters I got,’ she said, ‘were shocking in their self-absorption. Some older people wrote long letters about confronting mortality. Luckily, I could laugh at it. I could also laugh at the level of egotism.’ Anna laughed and put on a droning-academic voice: ‘“This is my preoccupation, now that I’m coming to the end of my career. I’m now going to share my thoughts on mortality, to you, who are twenty-two, and have just been diagnosed.” That,’ she added cheerfully, ‘was quite bad.’

  It took her about eighteen months to make a reasonable recovery. If she got a temperature, or was too hot, her walking suffered, but she was largely fine until she was thirty-eight and pregnant with her third child. ‘I got a stomach bug,’ she said, ‘and it absolutely floored me. In A & E, my body just completely gave out.’ She was in hospital for a week and then moved to a ‘step-down unit’ for rehabilitation. ‘There are literally people dying around you,’ she said. ‘I was about a third of the age of the others. People would think I was the nurse. When one woman died, someone actually started singing “Roll Out the Barrel” as she was wheeled out.’

  It was, she said, not just depressing, but also strangely unnerving. ‘They take away every bit of you when you’re in there,’ she said. ‘It feels very systematic. First of all, they remove your clothes and put you in a hospital gown. Then they take your jewellery, and then your hair doesn’t look like it normally does, and bit by bit it’s very depersonalizing.’ At one point, she found herself suspended, naked, seven feet in the air. ‘Someone was bathing me,’ she said, almost wincing at the memory. ‘I was on one of those raised seats, eight months pregnant and they just left me hanging there while they were chatting to people. The door was wide open. I’m in there thinking: OK, most people have no vision whatsoever, but still.’

  Most of us would not be thrilled to be hanging naked seven feet in the air. Anna found a practical way to cope with it. ‘If the hospital and the medical system strip you of every sign of yourself,’ she said, ‘which bit do you retain and which bit do you actually just hand over? You do need to find your inner core, that private self that you only share with your friends and family.’

  Anna is now forty-five. She hasn’t been back in hospital, but she does still sometimes have problems with her walking. ‘My leg gives way,’ she said. ‘I often have pins and needles down my left arm, and pins and needles across my lip and face.’ When she has to get up early, the symptoms are worse. ‘Airports are an issue,’ she said, ‘because you often have to wake up very early. We joke I have an airport walk!’

  Anna tells colleagues she has back pain. ‘Most things can be explained with back pain,’ she told me. ‘But you can look really drunk. One day, on the way back to the office after a nine a.m. meeting on a really hot day, a couple of cab drivers wouldn’t pick me up. My friend got really upset on my behalf and I was like, it’s f
ine, it happens.’

  The thing I noticed most as we had lunch was that Anna laughed a lot. ‘I suppose we make jokes about it,’ she said. ‘It’s a source of humour in the family. It’s a distancing mechanism, sometimes.’ And didn’t she, I asked, ever think that what had happened to her was unfair? Anna looked surprised. ‘No. It’s one of those things. If that starts, it’s going to be really difficult to come back from.’

  I wish that’s how I’d felt when I was told I had lupus when I was twenty-six. I wish it’s how I’d felt when the dermatologist called his students in to stare. It wasn’t. What I felt was: cursed. After my years at the Baptist youth club, I was still an evangelical Christian and everybody kept telling me that Jesus wanted to heal me. At meeting after meeting, I would hobble up to whoever was offering prayer. The people praying would tell me that whatever I asked in Jesus’s name, he would do. I didn’t think it was unreasonable to ask if he would mind making me look a bit less like a leper, and possibly just reducing the pain in my knees so it wasn’t pure agony to walk. Jesus seemed to be very good at curing other people’s headaches and colds. What, I wondered, as I dragged myself home in tears, happened to ‘take up your bed and walk’?

  When the body goes wrong, the answer is not God. Well, it may be for some people – there are many studies on the power of the placebo – but it certainly wasn’t for me. It wasn’t the answer to lupus, or acne, or migraines, or stomach pain, or insomnia. It wasn’t the answer to shadows on scans or lumps.

  I have been carved, and radiated, and drugged and reconstructed. What I can tell you from all of this is that sometimes medicine works and sometimes it doesn’t. Sometimes, the body will not be told.

  In her book Illness as Metaphor, Susan Sontag says that we should be very careful about looking at illness in emotional terms. In theory, I think she’s right. All I know is that when I’m unhappy, I get ill. I also know that every time I’ve been ill, I have got better.

  A change in grammar

  It wasn’t a big surprise when my uncle Maurice died, but that didn’t stop me feeling sad. He was a gentle Geordie, the son of a miner and one of the sweetest men I have ever met. At his sons’ school rugby matches, standing on the sidelines, he would often start cheering for the other side. He was on the side of the underdog. He was always on the side of the underdog. He was the only person who dared to tease my fierce Scottish grandmother, the mother-in-law even my mother feared. He called her ‘the Duchess’ and she loved it. Whatever he said, people loved it. Wherever he went, he brought smiles.

  He was ninety-three. He had dementia. He had recently moved into a home. All the women there were in love with him. He just kept telling them how much he loved his wife. His was a gentle death at the end of a long, good life. This is often not what death is like.

  I had only been running the Poetry Society for a few months when I answered the phone and heard my father’s voice. I knew straight away that something was wrong. My father believed you shouldn’t use work time, or work phones, for personal things. When he needed to call my mother about something when he was working at the Cabinet Office, he would go out of the office in his lunch break and use a pay phone in the street.

  My sister, he said, had collapsed while she was washing up at ‘the bookshop’, the mental health café and bookshop she went to almost every day. The ambulance had taken forty minutes to get there. The paramedics had done their best.

  I lay down on the floor of my office. My head was wedged against the filing cabinet, but I didn’t think I could move it. I heard a wail, and realized it was coming out of me.

  A few hours later, I met my friend Tina. We drank Chilean Chardonnay and had a bowl of chips. Anyone watching us might have thought we were on a nice girls’ night out, but I had no idea what you were meant to do when the person you had shared half your life with had been rushed to hospital and ‘not survived’.

  We don’t talk about death. No one prepares you for it, and no one tells you what to do when the person you loved suddenly isn’t there. No one even prepares you for the change in grammar. You love them – and then, in a micro-second, you can’t love them any more. You loved them. You loved a person, who has been a big part of your life, and now what is there to love? A memory? A ghost? Or just some atoms, floating in the air?

  In Papua New Guinea, when someone dies, the women from the surrounding villages gather in the house of the person who has died and wail non-stop for days. Aboriginals keen and then smoke out the dead person’s home. Jews tear their clothes as a sign of their grief. The Irish watch over the body, and friends and family will come to the house to eat and laugh and cry until the person who died is laid to rest. Most of us in Britain don’t do any of this. We sweep our feelings under the carpet and carry on.

  A few weeks after my sister died, I went to have a facial. A friend had given me a voucher because she could see I was exhausted with the effort of just trying to behave as if everything was fine, when it wasn’t. It didn’t help that I was also being taken to tribunal by my stalker. He was someone I had been kind to, because I knew he had schizophrenia and my sister had taught me all about an illness you wouldn’t wish on a rabid dog. My kindness had backfired and he had sent me letters, poems and pictures begging me to marry him. He had even once sent me a bottle of the perfume I wear all the time. He must have sniffed all the testers in Boots until he found the right one. When he applied for a job at the Poetry Society and I didn’t shortlist him, I got a letter telling me that I was being taken to an employment tribunal for discriminating against someone with a disability. At first I thought it was a joke, but I soon discovered that it was not.

  When I was lying on that beautician’s couch, she asked me to take a deep breath. When I did, she said, ‘Well done.’ I almost laughed, because when you keep going, even though your heart is breaking, nobody says well done. But actually somebody should say it all the time because you are still, somehow, managing to breathe.

  I was in my second year at The Independent when I got a call at work to say that the poet Michael Donaghy had died. I left the office and walked round the block, but nothing in my head could make the words real. I had known Michael since I first started working at the Southbank Centre, twelve years before. He had done mesmerizing readings and led workshops on poetry and dance. In my years at the Poetry Society, I had got to know him better. Michael was brilliant. He was charming. He was handsome. He was sparkling. He was sweet. He was irresistible. He was dead.

  There was a memorial service at the Union Chapel. Even that huge hall was full. We tried not to cry, because we knew that his wife, Maddy, wanted it to be a celebration. Some of us gazed at the crowds queuing up to squeeze in and muttered that we’d only need a broom cupboard for ours.

  Ten years after Michael’s death, Maddy Paxman published a memoir about her grief called The Great Below. ‘I was hanging out the washing in the back garden,’ she writes in the first chapter, ‘when he yelled down in panic through the open window that he couldn’t move his left arm and leg. My first reaction was “What NOW?”’

  She had, she writes, got tired of his hypochondria, and the parade of psychosomatic symptoms his body produced, which after one argument included ‘an egg-shaped lump on his back’. She finished hanging up the washing before she followed the ambulance to hospital. She was still hoping to make it to her book group that night. A few hours later, she walked into the resuscitation unit and saw Michael ‘stretched out naked on a gurney like an experimental animal, with tubes inserted into every orifice’. Four days later, she had to make the decision to turn off the machine that was keeping him alive.

  She held his toes as he died. His heart carried on beating as she watched him turn blue. With a nurse, she washed his body. She cut his toenails and put him in a clean hospital gown. As the light faded outside, she sang the song she sang to him when they were first in love, ‘To Althea, from Prison’. Words from Richard Lovelace, set to an Irish melody, a song, she says, ‘about how the spirit can
be free even when the body is in chains’.

  Maddy’s memoir is an extremely moving account of his death and the years that followed. It is also brutally honest, so honest that it lost her some friends. She is honest about the irritation she so often felt with Michael. She is honest about the fact that everyone who knew him seemed to think he was a saint. She is honest about their relationship. Poets, she writes, are ‘the most self-absorbed of all artists’. Having worked with poets for years, I think she may be right, though the ones I’m proud to call my close friends aren’t. And she is honest about the fact that at the time of Michael’s death, they were ‘far apart, in the way only a warring couple can be’. This is not what somebody usually says when the person they love has died.

  ‘So much fiction and film around death is just rubbish, really,’ she told me. We were sitting at the kitchen table in the house she used to share with Michael and their son. ‘I think stunned silence is probably how most people respond, rather than a big outpouring. It’s too big a thing to start feeling the grief immediately.’ On his last day, she said, she had a sense of ‘absolute clarity’, but that soon gave way to ‘the more usual sense of chaotic muddle’.

  She’s unusually clear about the complicated feelings that can hit you when someone dies. ‘We’d had a really bad year,’ she told me. ‘He’d been pretty under the weather and grumpy and anxious and demanding.’ They had been together for twenty-one years, but had only got married the year before. She had hoped that marriage would rekindle the romance of the early years. ‘Getting married was very romantic,’ she said, ‘but being married . . .’ She put her mug down and sighed. ‘I didn’t like it much, to be honest.’