Four people share their life-affirming experience of living with a terminal illness
Watch the full documentary here: Before I Go, The Documentary | BBC World Service
Four people share their life-affirming experience of living with a terminal illness
Watch the full documentary here: Before I Go, The Documentary | BBC World Service
Should my daughter go to her father/s funeral? Families are complicated, and finding the right way to say goodbye is hard. Is there a right way?
Read the full story here: Is This How My Daughter Should Say Goodbye? - Sharing A Journey
Lower house MPs vote in favour of bill that will allow people who are terminally ill and in intolerable pain to end their lives
Read the full story here: Victoria becomes first state to legalise assisted dying as parliament passes bill | The Guardian
Years ago, Charlie, a highly respected orthopedist and a mentor of mine, found a lump in his stomach. He had a surgeon explore the area, and the diagnosis was pancreatic cancer. This surgeon was one of the best in the country. He had even invented a new procedure for this exact cancer that could triple a patient’s five-year-survival odds–from 5 percent to 15 percent–albeit with a poor quality of life. Charlie was uninterested. He went home the next day, closed his practice, and never set foot in a hospital again. He focused on spending time with family and feeling as good as possible. Several months later, he died at home. He got no chemotherapy, radiation, or surgical treatment. Medicare didn’t spend much on him.It’s not a frequent topic of discussion, but doctors die, too. And they don’t die like the rest of us. What’s unusual about them is not how much treatment they get compared to most Americans, but how …
Read the full story here: How Doctors Die | Essay | Zócalo Public Square
‘After the soaring, a peace
like swans settling on a lake.
After the tumult and the roaring winds,
Sheila Kitzinger, the natural childbirth activist who died in 2015
I am 64, and entering into the terrain of my own drawing-closer mortality - yet talking about death is still forbidden. Sex is so much more out in the open. Death is the last taboo. We do not talk about dying, how we’d like to die, or how others have died.
Last October, my mum nearly died of sepsis – her organs had begun to close down but being the 90-year-old Yorkshire woman she was and still is, she battled through – and then by chance, I saw there was a death café at the Dissenter’s Chapel in Kensal Green Cemetery as part of their October Month of the Dead.
I invited a close friend who presumed erroneously that Death was the incidental name of a café, and that we were meeting for Saturday morning tea and a natter. Instead we found ourselves in a circle of twelve discussing - the feelings that are evoked when a family member dies, the nature of a good death and different funereal rituals.
It was simply incredible to have this space to reflect on death and dying. There was a palpable sense of closeness and connection between us all at the end. Amanda and I definitely felt more alive as a result of the extraordinary conversations. One man admitted he’d never really expressed the grief around his mother dying. Another woman talked about the terrible suicide of someone close to her in detail. There was the death/life paradox in action. Plus it took place in this simple chapel created for non-conformists in 1834. Perfect. It sounds weird to say but we loved it, and vowed we would visit more. Forget bars and restaurants, death cafes are the place for truly, deeply, madly meeting.
A few months later, I found myself having the idea – we’d already featured a couple of fiercely brave pieces of writing about death, My First Death by Lena Semaan who told us about her friend, Bob, who had been terminally ill and courageously took the act of dying into his own hands, plus Dreaming of Death by Caroline Bobby who has been in an intimate relationship with death since she was young - for a Death Dinner as part of our OUTage series of events supported by the Arts Council. It would also take place at the Dissenter’s Chapel. The aim was to invite ten people from Deathworld – from mortician and author Carla Valentine to Soul Midwife Patrick Ardagh-Walter, to academic and expert in death rituals, Professor Douglas Davies to coffin plate aficionado, Hannah Gosh who happens to have a tattoo of one on her leg – to dialogue openly about their interests in death and dying, then dig a little deeper. We, at Advantages of Age, are keen to open up this last taboo as well as helping to form a Death Community, supporting the Assisted Dying movement, and also facing the nitty gritty of what we might personally want in terms death and dying.
I also thought it would be fascinating to invite the guests to come dressed as they would like to be buried or burnt. As well to bring objects with them that they’d like to go alongside them on the onward journey. This personal DeathStyle fascinated me.
Our aim was to turn the death stereotypes on their head. The guests arrived to a big red neon sign declaring Welcome to Death and then had their photos taken in or out of a deliberately kitsch Lachapelle-influenced gold frame with a leopard skin backdrop! Of course, not everyone was so keen to be snapped in this Day of the Dead type Momento Mori and we let them off the hook. Professor Davies wore his grey suit but had a rather extravagant cravat with it. Patrick, the soul midwife, was in his suit and photographed with his white miniature rose, the object he had chosen to take with him into the next world, which he felt crossed over between earth and spirit, a living rose. Others were keener to step into the frame, Liz Rothschild who runs a woodland burial ground, had turned up in her cream nightie and had chocolates to munch in the after-life. Suzanne, co-founder of Advantages of Age, was wearing a sexy scarlet dress clasping a photo of her beloved boys. Caroline Rosie Dent dazzled with her gold and black Victorian dress, black shawl and headband covered with ivory roses. In fact, she was the style star of the Death Dinner.
Everyone was welcomed over that liminal threshold into Deathland by the Queen of the Night (Ingrid Stone), all in white, of course, rather than black, with her purifying burning sage sticks. In silence, we made our way to our seats at the table accompanied by the haunting, ethereal sounds of Fran Loze’s cello. An abundant feast – from tomato and goats’ cheese tartlets to Parma ham and the remarkable broken heart cake – had been prepared by Caroline Bobby, our magnificent cook and a guest.
During the first half of the dinner, I invited the guests to tell us a little about their relationship with death and how they were linked to Deathworld.
Charlie Phillips, photographer, has documented Afro-Caribbean funerals at Kensal Green cemetery for years. He explained how Afro-Caribbean funerals are changing and that the emphasis is on paying out a lot of money and having songs like Do It My Way by Frank Sinatra these days. He had brought along his camera, of course, as his death object because apparently he is referred to as ‘the dead man photographer’.
Liz Rothschild is a celebrant, started the Kicking the Bucket Festival in Oxford, owns a woodland burial ground and has a show called Out Of The Box about death. Liz explained how when a friend of hers died, her group of friends gathered in such an intimate DIY way, it inspired her to want to support others create this kind of a ceremony.
Hannah Gosh makes modern mourning jewelry and told us why she is so taken with coffin plates. She had also brought along a pug’s skull as her object, but not her pug’s skull!
Caroline Rosie Dent is an end of life doula and a death café host, she told us about her death anxiety as a child, and why she’d brought along a part of her son’s umbilical cord to take with her on the ancestral trip.
John Constable aka John Crow wrote The Southwark Mysteries, a series of poems which became a play. It is the story of the Winchester Goose, one of the medieval sex workers in the area who were condoned by the Bishop of Winchester but forced to have unconsecrated graves. John has been a campaigner around the Cross Bones graveyard for many years and holds a monthly vigil there on the 23rd of every month.
Caroline Bobby is a writer, cook, erotic healer and psychotherapist. She had brought with her The Book of Longing by Leonard Cohen and her favoured piece of fine woolen cloth, that she would like to be wrapped in when she goes. She sees herself becoming ash and being blown away.
Patrick Ardagh-Walter is a soul midwife, which he describes as being simply alongside someone as they approach this last stage of their lives.
Carla Valentine is an author, mortician and the Technical Assistant Curator at Barts Pathology Museum where she looks after 5,000 body parts in bottles. She describes herself as being quite an unusual child who was interested in death and whose grandfather died when she was seven, in front of her.
Professor David Davies lectures in Death Studies, his most recent book is Mors Britannica: Lifestyle and Death-Style in Britain Today. He explained that he’s fascinated by different groups and their attitudes to death, some like their lives and deaths to cohere, others are just the opposite. He said he hadn’t brought an object because he’s never thought of having an object with him at that time.
Liz Hoggard is a journalist who admits to feeling like a bit of a death tourist in our midst. She sports pearls that might act as some sort of collateral in a future existence and has brought along two lipsticks, one of them is black, the other red. Max Ernst described the latter apparently as ‘the red badge of courage’.
During the break, we listen to Caroline Bobby’s recorded version of her piece, Dreaming of Death. It is precious and moving. In it, she says: ‘I don’t know if I long for death just because living with baseline depression is unforgiving, and every morning is a shock. I don’t think it’s just that. This human and embodied world has never, quite felt like my natural habitat. At a cellular level I am aching to go home.’
After this raw and vulnerable piece, we entered a discussion about death led by Suzanne. We looked at whether there is a revolution in death going on, whether death is really trending, how we could welcome death into our daily lives in conversation and what sort of funerals we would like. Some of it was funny, other parts were poignant. Professor Douglas Davies declared controversially that the only revolution going on is amongst middle-class women. ‘The Death Chattering classes,’ he asserted.
Finally, Charlie Phillips declared that ideally, he would go while making love. And that he’d like ‘Lucky Motherfucker’ on his gravestone as well as ‘Came and Went at the same time’. As you can imagine, laughter rippled through the chapel.
I announced that natural birth activist and then death activist, Sheila Kitzinger had inspired me. She had a death plan, managed to stay at home to die surrounded by her close family despite doctors trying to get her to hospital because she had cancer, then she was put in a simple cardboard coffin decorated by family and friends, and eventually taken in the back of a car for a small woodland burial. The more flamboyant memorial service came later.
Son – take note!
Death Dinner will be screened for the first time tonight - 6.30pm at Barts Pathology Museum, E2. https://www.eventbrite.co.uk/e/death-dinner-film-screening-tickets-38270917344
So we are selling up and have to clear all your stuff from the attic. The boys brought it down from the attic to what used to be Kitty’s room. Kitty said, “Mum, it’s like tons of stuff, not all of it Paul’s, but literally, it’s tons.”
“Do you mean literally in the non- literal sense, as our friend used to tell us she was ‘literally bathing in sweat’ and it made us laugh and grossed us out at the same time? Or do you mean literally as in truly?’” It’s a fair question. We are a family of talkers and exaggerators. She tells me wait and see.
So I go to the house to open my daughter’s old room and the door is just blocked with wall to wall boxes, there is not even a little passageway like you see in those programmes about people with OCD. It’s like Charlie Chaplin opening the door to a wall of snow, after a snow storm. A sea of boxes, each one overstuffed with things from your living life, with your wife, and before your wife. The forecast calls for storms. I feel strangely seasick.
I try to pull out one of the middle boxes, like giant Jenga, and manage to not drop the ones on top, which plonk down on the bottom ones with a heavy thud. I remember when you lived on the top floor as the same block of flats where we lived, when I was pregnant with Kitty, and climbing all these stairs, puffed out with my heavy pregnancy, walking slowly and heavily like an elephant in platform shoes. I called though your letterbox, “Paul, let me in, I need to pee….” But you were asleep, or not there. You are not here now, not ever. And yet you are everywhere, in these fucking boxes, hundreds of em.
I manage to carve out a Michele sized passage way, opening some of the dusty boxes with bits poking through them. A tripod. A shitload of band flyers for your various bands. Boxfuls of faded Christmas tree decorations and Halloween stuff: your wife was a big fan of both. Big box of home bar equipment. You had beautiful cocktail glasses. Oh God those cocktails. No I mustn’t. Just for today I am not going to drink. I have to say this every day, to not drink. But those home bars. We did love them. First Eddie got a bar. Then we got one, which proved to be my undoing, our little oval lit up monster maker in the corner, soon to be my favourite toy, a drunk’s version of a Wendy House. You had a bar corner and a beautiful black and grey ice bucket. I don’t remember the bar, if you had one. If nothing was clean we’d drink out of Arsenal coffee mugs anyway. Your father said, at your funeral, that you didn’t believe in God, you believed in Arsenal. That got a laugh, the sad funereal forced laugh you do when you want to cry.
More stuff. A guitar stand which topples onto my left shoulder. Boxes and boxes of damp ruined red velvet. A strobe light. A vintage effects pedal. Hundreds of unsold CD singles of your band. Bettie Page posters and magazines. A Velvet Underground fanzine I loaned you but you never returned, Now, you are really never returning, which puts the magazine thing in perspective. A box filled with the most awful clothes that are meant to be yours, including your strange Japanese 17 year old tourist with I Love Kitty everything ( not my Kitty, the other Kitty) Camden market style punk clothing. Irony or just plain bad dress sense? You kept me guessing. You and your big girly fun fur coats. The campest straight guy I knew.
I remember the job lots you used to buy from the BBC costume department, because you’ll never know when you need 30 size six dresses in a checked Dolly Parton style , for a Benny Hill episode with a big country Western dance scene at the end. “The whole lot for a tenner, you bragged at the time, in your miniscule flat, now filled with dresses no one could wear. I tried one on, and it fit beautifully. But I didn’t want 30 of them. That was 30 years ago, 87, I think. We stayed up all night on speed, playing the same Television album over and over, trying to decide if Tom Verlaine’s nasal vocals added or detracted from his guitar playing. We played Glory fifty times at least, just for the opening riff. That was the sort of stuff we’d do not even on speed. Just to make sure we weren’t missing anything.
I sniff everything, like a dog, anxious to find something, anything, that faintly smells of you, that strange mixture of sweat, vintage clothing and whatever it was you put in your hair to quiff it up, when you had enough hair to quiff up. But everything smells of dust and damp and shaved wood and rotting cardboard. Those pink and black hounds tooth trousers , price tag still on ( twenty quid) – something a born again Christian would wear, with a polo neck and polyester leisure jacket, in the early 60s, on the cover of a knitting pattern magazine, you wally. I am looking for a trace of you, not just your stuff, a trace of the friendship that partially defined me for over 20 years, my best friend, and I think I was your best friend, ( you were so loved by so many, I must not be the only one to claim you for BF status) the one who stayed up with you watching a documentary about the Jonestown Massacre on Christmas day, when everyone had gone to sleep, stuffed and drunk, we watched them drink the Kool Aid and become bloated bodies in the forest. It seemed Christmasy to us.
The very thing that defined me and made me feel OK, you, your absence became the new thing that defined me. When you died in 2010, the only thing I knew how to do was be sadder than anyone else, I even had to out-sad your devastated wife and parents. I did this by becoming a raging alcoholic and pill head and walking out on my family, to live in a small room and drink, and think about you. Now, I am somewhat reconciled with the family I so selfishly left, not enough to live there, but enough to be nice and fair. And here I am, wading through boxes of the life you lived so outrageously, so passionately with your wife, with your music, with your strange obsessions with Jimmy Swaggart and other telly evangelists, your nerdiness about Mac computers, even your taped answerphone messages.
You were a curator before everyone became one. I choke as I hear my own, younger voice on your answerphone tape, sounding all warped and watery, the cassettes not swimming well in the attic damp storm. “Hey Paul, it’s Kirschy, are you coming to the Mean Fiddler with me or not, or shall we just meet at the Killer after the gig?” The Killer was our local pub, on average a police incident or at least a glassing a couple of times a week. A girl drunkenly calling your phone, while dancing on a table at your own gig. “Paul, I’m dancing on the table, at your gig, and ringing you at home. How mad is that?” Then an interview tape, something for your work ( the day job- a journalist) with a guy saying the biggest spend of social security will be residential care of the elderly and things like “ medication reminder systems” -an alert to take your pills. You never got to be elderly. I never forget to take my medication.
I am making good progress. I have four piles. One for charity. One for the junk yard, one for me, one for your wife…your widow. I understand the need for tangible memorabilia, that by touching your stuff it will somehow magically bring you back to me, that that smokey glass and steel coffin going behind the curtain never happened, that I didn’t get trashed at your funeral and fall down in the disabled toilets, trying to hoist myself up by the emergency cord. But it’s all an illusion.
It’s just a bunch of stuff sitting in green recycling bags or boxes marked “Soothing lemon and ginger tea” Out of date technology that was new, once. Strange, global shaped Macs and tellys. Stuff that might not work again. When you died, I thought I would not function again. For two years I made myself redundant, a skeleton with a bellyful of vodka and pills, wanting the next best thing to being where you were, which was oblivion.
How dreadful it was to embrace the dead when I had living, loving children and a confused and sad husband who could not understand why I made this crazy choice. I guess at the time, it felt like the choice made me. You know where you are with the dead. The living are a constant unknown, for living people are always undergoing a process, changing. Meanwhile, your stuff gathers damp and dust in the attic. I keep opening things up, clearing things away
My daughter works from home, the clicking of her keyboards in the other room a strange comfort. There was a time, in my madness, I probably would not have been welcome to be in the house alone with her. Now we break for tea and biscuits. I do the washing up, just like a normal mum visiting her daughter. I have a fleeting thrill of feeling, well, normal. Looking out at the window at the still intact family next door, two kids, maybe three? The nervy but always on call for babysitting grandmother , going outside for fag breaks as the kids knock a football around. A kitchen extension in an already enormous house. I ask Kitty, “When did they build that?” And she tells me ages ago, when I still lived there, as some sort of mother and wife. I can’t remember that. I have a hazy memory of the family that lived there before this one. Of people in gigantic houses, their house, the house next door, building, always adding bits, floors, extensions, playrooms, guestrooms. Everybody wants more space. I just want, wanted, more time with you.
Me, I have all this stuff, Paul, your stuff, and no room for it. I finish the washing up and head back upstairs on a caffeine buzz, determined to get the job done.
Then, just like in that Chrissie Hynde song that always makes me well up, I found a picture of you…young, leather jacketed… and my heart leaps into my mouth and I gasp for air. I’m not sure why. I have loads of pictures of you, I just didn’t expect to find “you” here, although you are everywhere…. and I am willing myself not to cry, because I’ve been instructed not to by Mally. I don’t how things work in the land of the dead, if you have found each other, but Mally died a few years after you did. Not suddenly like you, but slowly, cancer ravaging his throat and eating him up inside. One day, months before the end, he drove me to work. I didn’t know how he could see anything, as his eyes were reduced to slits, his face so swollen from the useless steroids. He pulled over into a side street and said, “Look, when I die, don’t do that crazy shit you did when Paul died. It’s not allowed. Don’t fuck things up again, Kirschy, because I will come back to haunt you. Just don’t do it.”
And I didn’t. But still, here I am, kneeling in the middle of my old front room, sobbing over a picture of you, and then I clock Kitty in the doorway, hands on hips, in a motherly “What sort of mess do you call this?” sort of way. She says, in a long, exasperated exhale, “Why are you doing this, again? Why are you …doing this? Don’t do this…”
“I’m not doing it, I’m not doing anything,” I lie badly, eyes red-rimmed, a stray tear falling onto the photo.” I stand up quickly and put the picture on a pile. She’s rightfully on guard. I did some crazy shit when you died and she’s had enough. It’s taken ages to get her back on side, just about, so I just need to crack on tidying, and stop crying.
I miss you, but I understand for whatever reason, your number was up. I’m back in my flat now, crammed with a fair bit of your stuff. The strobe light turns my little corner of Hackney into a disco. I can listen to Cosmic Dancer, your funeral music, without crying now.
If you get this, let me know what it’s like , where you are. Give me a sign. I’d ask you to look for my dad, for Rita, for Mally, for Lizzy, for Zak, for Josie, for Bowie, for God’s sake, he’s got to have some dead sightseeing address. but I know there are way more dead people than live ones so it’s probably pointless. Right now, just for today, I won’t drink, and I will stay in the land of the living.
Love you always,
What makes a good death? This is just one of the questions we asked four end-of-life doulas, who have been trained to be a calm, compassionate presence for people who are dying, and their families.
How might listening to the conversations of those who confront one of life’s taboos regularly and in such a hands-on way change how you approach your own death or that of someone you love?
In this short film, we meet four British end-of-life doulas
Read the full story here: “I help people to live until that very last moment” (5 min)
Read the full story here: Likely Lads star says her GP grandad helped hundreds of patients to die
Read the full story here: On Losing My Mother