A Personal Perspective on Bereavement

This is the talk I delivered today, 8 July 2011, at The 7th Annual Barts And The London NHS Trust Bereavement Conference. Thank you to everyone.Hi, my name is Elaine Kingett and I am a widow. Now, let’s be honest. What does that word conjure up for most people? Grey hair? Bus pass? Well, I do have one of those….Evenings in front of the telly with a cup of cocoa and a cat on my lap? Certainly not sex.You don't get a booklet on that one, you see. There's one on claiming your pension, another on bereavement counselling, but where's the one on suddenly being single after 30 odd years with the same bloke, who you fancied right up to the end?My husband, Jerry Kingett, died in the summer of 2000. He had been ill with leukaemia for over three years. I loved him then and I miss him now. And so do my three children. But he had been ill for so long that his death came as a release for both of us. And I needed to move on. And as part of the moving on – inevitably – there was the thinking about new intimate relationships with men.While he was ill, I didn't have time to look in the mirror and then suddenly he wasn't there and when I looked at my reflection, I saw someone I didn't recognise. The trouble was, grief is great for the figure. Want to lose weight? I’ll tell you how… I lost pounds. Someone dies, there's loads to do. You race around. You don't eat. You drink like a fish. You drink like a widow. At seven and a half stone, two weeks after his death I went on holiday with my kids and friends to Samos and got chatted up by the local tour guide. I laughed in his face at the absurdity  of it all.And what about this grieving business? How do you do it properly? For how long? When are you allowed to laugh again? To think about other men? You're not divorced. You're not single. You're a widow and you're meant to be a saint, a goddess, an object of grief and pity. But after the sheer hard work of dragging my family through years of chemo, bone marrow transplants, stem cell transplants and late-night hospital dashes up the M23, death was initially a blessed relief for us all, I remember driving away from the hospital after Jerry died and a small voice from the back seat saying,“I know it’s sounds awful Mum, but it does feel like a relief.’ And that was my 11 year old daughter.You’re a widow.  You've done your job. You did it well and everyone said so, constantly reminding you of the weeping martyr role you are expected to fulfill, while you’re discovering this disgraceful urge to get your hands on a healthy male body to prove you’re still alive. I remember lying in bed on my own at night for weeks afterwards, in the dark, breathing in and out with great concentration, hands on my rib cage, wondering when my heart would stop, wondering how it managed to function all this time without my attention.It was hard on my kids when I was ricocheting round the house like a pinball, gleefully clearing out binbags full of syringes, drugs and dressings. For them, there was no exhuberance, just a huge gap and a mother who had overnight turned back into a woman. Oh, I thought I had it sussed, this grieving and dealing with it, and then I found a note he'd written saying goodbye and to not hurt for too long and it was Crumble City. I threw away the spicy pickles only he ate because they were past their use-by date. I didn't buy white wine any more. The fridge never emptied, it rotted, and still the post arrived addressed to him, offering accidental death insurance. I took photos of the kids on their first day at senior school and caught myself thinking: "I must take them to the hospital to show him." Wrong.Plus there was this awful sense of vulnerability. A long-term partner provides boundaries, however flexible, and without them I flailed around, my anchor up, crazily searching for something, someone, to hold me down, keep me in check, under control. I had joined a new gang and I didn’t know the rules. I'd been booted out of Happy Families, smack bang into Blind Date. Suddenly I looked at my women friends and wondered which one would be the least likely to put off the blokes and most likely to want to talk about sex all night. I went Christmas shopping for the kids and came back with a catsuit for myself. When my husband was ill, parties were to be avoided to spare other guests embarrassment. Cancer's not fun, it makes people uneasy, and baldness is only attractive when you still have your eyebrows and your face isn't blown out with steroids. But after his death, every invitation was accepted with brazen enquiries about probable single men quotas. It's not that I wanted to move a bloke in, you understand. I didn't want "a new Daddy for my children". Not then.But while I, from the very first gut- wrenching, hand-clenching moment of his diagnosis, knew his leukaemia was terminal, incurable and unlikely to respond to treatment (they had lots of  booklets on that one), my children saw every subsequent day as confirmation of success and a possible return to normality. But for me, the person I fell in love with, gradually faded away, as I watched our roles change from ones of equality and delight into fragile, terrified patient and supposedly strong, optimistic carer. For my children his death was a total surprise, a deceit, a denial, a promise unfulfilled.  I’d had more than three years to try to get my head around it; they've had only just begun. They were raw and ragged, trusting nothing and no one. Watching my every move. Urging me to eat properly but worrying when it was liver and broccoli in case I had something wrong with my blood. They wanted life back as it was, but I couldn't bear that.And it's all very well 30-year-olds moaning on about wanting to meet the right man, settle down and have kids. At least that's socially acceptable. Try talking about rediscovering your desire when you are 50 and your husband's just died. So what do you do? Take up knitting? Rambling? No. You go and treat yourself a load of new underwear, just in case, and scan the Lonely Hearts columns with a healthy air of skepticism.In fact, it was six years after Jerry’s death, when I no longer felt half of a whole, when I was full of plans for the future, and had learnt how to live on my own and not fear the weekends, that I did meet a new partner at the wedding of an old friend. By that time, meeting a man was way down on my list of things to do. Getting the car serviced and removing the greasy stains on the hall walls came way above. It was actually my kids, two away from home and one about to leave, who began to fret."We don't want you to be on your own," my daughter explained, "but trouble with you, Mum, is you're too picky."Maybe. But I'd already decided I’d rather be single than bored stupid by some dull, middle-aged bloke with no hair or significant muscle tone. So I wasn't looking. Which, as they say, is when it happens.But my kids were confused, we had become such a tight unit after Jerry's death – maybe too tight. We had clung together on the wreckage, our home was like a student house-share and my daughter would often sleep with me. She was used to having me to herself and in the face of "losing me" her worries about leaving me alone were forgotten.For my eldest son, it meant a lack of role. Although it was an overdue liberation, he'd shouldered far too much of the responsibility of looking after his younger siblings and supporting me emotionally, but it must have seemed as though he was pushed aside in my affections. My middle son, decided, dismissively, that it was up to me if I wanted to have a boyfriend, but he was not interested in hearing about him. Ouch. I'd thought they'd be pleased that I'd finally met a grown-up, but I realised that they saw this new man as much more of a threat than other dates: the terrifying possible "replacement" for their father."He's nothing like daddy!" My daughter shouted at me, when emotions were running high. And it was true. She ranted, I raved. We both cried.But when you start a new relationship at a later age there's so much baggage – a horrible, but apt, word. You take on ailing parents, ex-partners, children, social networks established over decades. It's about integration into an existing infrastructure, often policed by cautious, highly protective friends and suspicious offspring.And unfortunately, this time, it hasn’t worked out.A year after we met, he asked me to move in with him and I thought it had to be the right decision. I'd missed sharing my life with a partner. I missed someone to share my bed every night. A hand to hold, a chest to lay my head on, a foot to stroke with my toes, and warmth for when the winds howled and the bills added up in my head. And of course, we agreed sensibly, it would be much cheaper living together.My three children thought I was mad. The  gap year daughter hit the roof."It's meant to be me that leaves home, not you! We won't have a family home any more.’ How right she was.I stuck my fingers in my ears, my worldly goods in store and dreamt of log fires and sandy beaches. But He liked a TV in the bedroom; I preferred the dog. He liked local radio; I loved Radio 4. The list seemed endless. He liked dark colours; I yearned for white walls. Were soft furnishings going to drive us apart?Perhaps as a widow I was less skeptical – I’d been lucky. I had no experience of deception or rejection. He was divorced, his wife had left and that leaves a heavier heart.And my adult children, how did they respond? They wanted me back in a house that had designated space for them, with Kingett family photographs on the dining room walls, our memorabilia sitting side by side with his, on the sitting room shelves, and freedom for them to come and go without asking permission.Our naïve idea of Happy Step-Families saddled up and rode off into the Cornish sunset.And was our relationship just about sex, as so many dismissively pronounced, as if that was so inconsequential at our age? No. True, the chemistry between us warranted a Nobel Prize in Physics, but it was about so much more. I was looking for a best friend, a companion. I wanted what I had before. He didn’t.In later life, we crash together at vastly different emotional stages. Even if we equate chronologically, we cannot be in the same "space". I'm surprised to realise how much my needs have changed. Living alone inevitably made me stronger and more independent.After nearly five years together, he told me that he no longer loved me and I had to leave. I realised that change and letting go of the past, selling the family home he’d lived in for 30 years and leaping forward into new unchartered waters, something my family had been forced to confront, was a too frightening  prospect for him to consider.  His bereavement, after losing his wife, would be to ‘loose’ his home, which had become his, and his adult children’s, identity.So who can a woman rely on when the proverbial hits the fan?I discovered when Jerry was diagnosed and after he died, the differing and sometimes surprising attitudes of my nearest and dearest. Death and dying, words more shocking in polite society even now than the crudest of blasphemies, are still the big taboo – even in our brash Reality TV world.The sexual shenanigans of all and sundry are splashed all over the tabloids and the broadsheets, and body brazen pop stars can flaunt their kit in sexually provocative poses 24/7 but as Eve Richardson, chief executive of Dying Matters, a coalition backed by several major charities, which promotes discussion of end-of-life issues says‘Although someone dies every minute, our research has found that many people still avoid talking about dying.’And the euphemisms still abound, ‘Sorry to hear you lost your husband,’ says the neighbour, as if Jerry was the left hand of a pair of gloves or ‘Sorry to hear he passed away’, as if he’d  floated out of an open window like a puff of smoke or, like the  gravestones in my local Abney Park remind me every morning when I walk the dog,  ‘Fell asleep’. How terrifying that one is for small children in their beds at night.Even some close friends don’t know how to cope with a widow but disasters happen and whatever they are, whether it's the washing machine grinding to a standstill the night before a family holiday or your husband being diagnosed with terminal cancer, you need your friends. But this is not a cautionary story. A "Better be nice to Sonya who bores me stupid but who always offers to have the kids" edict. No one expects you to get on with everybody and, let's face it, some people are a right pain in the butt. This is more a tale of sheer wonderment at the extraordinary ability of some to support, nurture, understand and, above all, forgive…. and the heart-stopping ability of others to shove their faces in the sand and wave goodbye with their feet. My husband was diagnosed with plasma cell leukaemia. That's the dodgy leukaemia, the one that excites research professors for its incurable end - of - the - road status and terrifies the rest of us. Our middle-class lifestyle was thrown into disarray.Suddenly, he was the helpless member of the family, I was the carer and our three children, were mere shell-shocked ninepins toppling over at every opportunity. My parents were in Cornwall, Jerry 's relatives were in Inverness and we lived in Brighton. During the subsequent three years of chemo, statementing, school expulsions and Prozac, it was our friends who absolutely kept us alive. And just as there is Waitrose for good fish and Lidl for cut price beer, so friends click into different categories. There were those who thought that the bad karma of cancer would rub off on them; that by associating with our debilitated state they too would become tarnished. They didn't want their hermetically sealed bubble to be popped by the realisation that death would get them as well. We were dinner party friends and it's hard discussing your next holiday in Antigua if the person opposite is bald through chemo and wondering when his toenails are going to fall off. Male friends, so guiltily glad it wasn't them, were jolted into income protection insurance as they saw their traditional role as father and provider threatened by the destruction of Jerry 's life. I would catch them staring at him across a room, tears in their eyes, embarrassed by their own rude health and so moved by his fragility. But his conversations with Paul, Lloyd, Ludo or Ric were about model aeroplanes and jazz CDs, not death, and that made him feel normal and allowed him to escape from his new job description of cancer patient.On the other hand, sometimes another person's crisis gives true friendship a focus, an opportunity to show, in practical terms, the love and respect that binds people together. Two days after he was first admitted t o hospital, when death seemed imminent, I had to "phone a friend". Joy worked for a solicitor and Jerry needed a will. In a noisy hospital corridor, I frantically scrawled down the format while she dictated over the phone. Suddenly, we'd been catapulted into an alien world of haematology and pharmaceuticals that others had only experienced on Casualty or Holby City. As a family we had to deal with it, we had no choice. For us, the emotive words "bravery" and "fight" were irrelevant and insulting. We had to swallow our pride and ask for help, over and over again.Our friends had a choice: they could stay or they could run, and some ran. They sent cards and sometimes flowers (my kitchen looked bizarrely celebrational every time Jerry had a crisis), but they didn't call. They looked embarrassed when you met them in the street and slid away mumbling. They responded appropriately but tacitly avoided involvement.But there were those that rose to the occasion, My three friends of 40 years' standing - Sue, Kay and Alethea - organised a rota and, in turn , abandoned their families and travelled half way across the country to cook, clean and hand out tissues. Alethea was with me when Jerry died. We held hands across his bed as the man we'd known and loved for 32 years faded away. Always good to have a Quaker in a crisis, as another friend remarked.Empathy coupled with positive action, not passive altruism - maybe that's what sorts the wheat from the chaff - and without going all Halle Berry on you there a was a couple whose joint support was, and continues to be, truly incredible. We'd known Harry and Lesley for 20 years, but it wasn't until Lesley turned up at the hospital in London with flowers AND a vase to put them in, that I realised what a rock she would become.They were a "me substitute" on whom I could rely, far away and exhausted in Brighton. They were surrogate parents I could lean on, knowing they would stand up to any pressure. I trusted them implicitly at a time when I trusted no-one, believing that if I didn't keep my eye on the ball 100 per cent of the time, a blood test wouldn't be taken, a rise in temperature not noted.During Jerry 's last nights Lesley and I would lie on mattresses, either side of his high, white metal bed, taking it in turns to try and sleep while listening attentively to his breathing. After he died, we went back to their house to cry, to eat, to remember and let go. The next day we went to Brixton to register his death and I sat numb and dumb as Lesley correctly answered all the questions for me. Together we toured the crematoriums and funeral directors of south London with Mufti, searching with the help of The Good Death Guide for a suitably groovy location for a dead bloke with attitude. Afterwards, they invited my kids and I to join them on that family holiday to Greece and when we came back Lesley and I went together to collect Jerry 's ashes.After Jerry died, a lot changed, including me, and not all the relationships I'd depended on survived my metamorphosis. Initially, the sheer selfish relief of having survived with most of my marbles intact brought on a type of hysterical euphoria. I wanted to taste, to smell, to feel everything. Friends were dismayed. When Jerry was ill I'd been easy to like and admire, the wife and mother who gave up everything, including make-up, for the sake of kinder, kirche, kuchen. Now, I was drinking too much and eating too little but I had boundless energy and glowed. It was just not on. In turn, I rejected them. They wanted to grieve and I couldn't bear it. After living with death for so long, I wanted to live. They were all indoors and I wanted to go out. Indoors, I felt I had nothing. I had lost my best friend and had no one to play with. I couldn't watch TV or listen to Radio 4. Everything seemed to be about relationships. I couldn't do "happy couples", I hated cooking and we lived on pizza. I didn't want old life and responsibility, I wanted Radio 1 and oblivion. I felt alienated from my friends and unable to play the role I felt obligated to fulfill. I knew no single men or women of my own age. I lived with my children and worked with one woman. I felt divorced from polite male society and days would pass without a conversation with a man.Now, I understand the meaning of true friendship and the responsibilities attached to it. I'm more selective about who I spend time with and sometimes it's just me.Friendship demands sacrifice, it's awkward and gets in the way. It wakes you up in the middle of the night because it wants to talk about where the hell its husband is and it tells you that, my God, your arm s really can't do sleeveless anymore. It's honest and it hurts, but if it's not, it's not worth it and anyway, give and you get back. Especially in today's scary world, where we need even more to tell friends we love them and give them a hug. Whatever they've been up to.So finally, what advice do you give some one about all the stuff that dead people leave behind? The tangible reminders of loss? How do the designated decide on the importance of another life’s aquisitions?A few months after Jerry died, I’d finally plucked up the courage to touch the things he'd left neatly arranged on his desk in the sitting room. A small, red plastic-covered notebook glowed like fire. I'd always dismissed it rather grumpily as containing yet more of his slightly obsessional shopping lists of obscure music and new books that he had to own. But it was a love letter to me and to our children. A last "Hello & Goodbye" in failing script, for us to discover after he'd gone. His hopes and dreams for us all, for even the cat and the dog. Written so alone and in such despair."Don't hurt for too long, Elaine. I've stopped hurting now. It's time to get on."I just crumpled into a heap. "Mum? What's the matter? Why are you crying?" My daughter asked nervously, kneeling down beside me."It's from Daddy," I said.In those early days I'd been crazy, with an almost manic need to sort things out and construct a new framework without him. Close gaps, wipe out the pain, remove the evidence and show the world I could cope. Sorry, kids, it must have been hell. Initially, I'd had no problem chucking things out – it was cathartic and I was relieved to no longer live in fear of his death, which had haunted and absorbed my every waking moment for almost four years. Only Jerry and I had known the hopelessness of his diagnosis. I gave away the majority of his clothes to male friends and packed away classic pieces for my sons. Jerry was a snappy dresser, and as an art director in an advertising agency, he adored good design and was an enthusiastic shopper. He was an avid collector. I kept a bit of this and that, donated 43 corkscrews to the local hospice and asked his male friends to help with the rest – Ric to sell the tin toys, Paul the model aeroplanes, Lloyd the guitars and saxophone.When I downsized a year after he died, desperate to escape from a house that echoed with his loss, I roped in close friends to help sort three storeys and 16 years of family life. I went on autopilot and planned a clear-out campaign. Every weekend was taken up with visits to the local tip, hurling black bin-bags full of college work, old duvets and clammed-up paint tins into oblivion. I organised an open house sale and invited in the neighbours.Looking back, it must have seemed like raking over his bones. But I was rolling on adrenaline that numbed my senses. How could I sit and read every letter, every postcard, I reasoned. How could I keep every toy, every playschool painting? Who needs a collection of 12 old teapots or two big-bags of fabric remnants? If I slowed down and reflected for even a second, I might never find the will to start again. I've never regretted what I gave or threw away, but the kids have told me recently that they have.In the years that followed I kept a white canvas trunk in my bedroom. In the sunny bay window, the blanket-covered top was the dog's favourite napping spot. Inside, I kept a selection of items, a potted history, if you like, of J Kingett Esq, which was hidden from view but near to my heart. His favourite soft, grey V-necked Gap sweater that Lucy loved to cuddle him in, neatly polished brown leather penny loafers complete with shoe trees, four special American-label, button-down collar shirts in glorious coloured checks and stripes, a faded baseball cap that protected his chemo-attacked scalp from the summer sun, a leather briefcase and Buzz Lightyear. The kids would spend hours emptying and packing away his treasures.There were also totems that had significance only for me. A collection of round beach pebbles. A blue Bakelite mug with a crack in the rim. The keys to his bike lock. I sold his mountain bike but the keys were far more portentous. During various moves I also took with me a plastic crate of tangled audio/electrical cables that only Jerry knew the function of, and which achieved almost mythical significance. "Oh, chuck it," Jamie, my eldest, finally said one day. So I did.Ten years later, I had regained my sanity and lived with a new love. And the grief triggered unexpectedly by unpacking my late husband's possessions in my new partner’s house was far greater than I had imagined.Tucked away at the back of my jumpers, in a pile of "might wears" was a tattered, check Madras cotton shirt. Handmade, ripped to shreds, too small for me or anyone else. Jerry made it for me, without a pattern, when we first got together. Why did I keep it? What lightning would rend the heavens if I put it in the bin?In my office was a red cardboard box, patched at the seams with parcel tape. "Scary things", it says on a white label, and then underneath, "Not scary now". But who was I  kidding, because this was a box of cancer diaries that I kept during three years of his treatment and a place for all the get well cards that didn't quite work.It took me longer to unpack all the boxes labelled "Jerry's Books", which I'd been carrying around during two house moves and years in storage. I stacked the Sci-Fi, Charles Bukowski and Tom Wolfe on the new Ikea shelves.Brought out into the light in another man's house, it felt like adultery. As if I was inviting him to witness my infidelity. The books we collected with "Jerry" in the title still slept in the dark, too blatantly named for me to display.His most personal effects I  kept hidden. A neat chestnut-brown leather suitcase held his last Filofax. The diary entries recording my hospital visits to him, dates of our kids' school activities, his in-patient appointments and blood test results. As the weeks passed, his writing collapsed and began to wander over the pages, searching for a home. Even now, it is his writing that most attacks my heart. There are no entries after 26 July 2000.Last week, my daughter and I once again packed up our family stuff, this time in my ex partner’s house, and she wept again when she discovered this case. Inside was his wallet with lottery ticket receipts, bank cards, library cards, credit cards – all the paraphernalia of life. All expired in 2000. Five pairs of designer reading glasses, all in proper cases. Useless to anyone else but as much a part of the man we remember as the twinkle in his eye. There was a black-and-white spotted scarf that he used as a sling when his collarbone disintegrated, good-luck presents from the kids, a Swiss Army knife.All that was no longer there was body.I still have piles of his aircraft books, music books, style magazines. For ten years I have promised myself that I would sell them, but each one is a part of our life together and it feels like casting off a child.When I see my beautiful daughter, now 22  and so physically like her father, wearing a T-shirt emblazoned with his name from a gig he did 45 years ago, I am so proud. When Jamie tells me he's released his first record and William gains a place on a graphics degree course and then does internship in Chicago, I understand how people live on.It was in sharing my life and family possessions with a new partner, in his family house, that I had to finally face up to the true loss of my husband and my children's father. I had to learn, painfully at times, how to celebrate his memory with happiness. And how to finally move on. Jerry wouldn't have wanted it any other way.With thanks to Tessa Hilton and Woman&Home magazine.