Thank you, Aaron Burch, for publishing Nine Endings at Hobart. (My first piece of nonfiction – which turns out to feel pretty exposing. Who knew, right?) Hobart has long been a journal I hoped I’d one day find a way into and I’m pretty damn chuffed. If you’d like to, you can read Nine Endings here.
Category: Uncategorized
The hell that is endometriosis
https://www.bbc.co.uk/news/uk-54513072
Mine is a familiar story. I was in total agony every time I had a period. In my teen years and twenties, I always knew at least 2 days of the month would be spent curled in a ball, weeping, puking, trying to breathe my way through the worst pain in the world. I had days off school. I walked out of classrooms and exams because I needed to vomit. (Nobody ever suggested I retook one A level that was completely messed up by my period and me walking out after only half an hour.) Nobody ever said being so sick wasn’t ok; hot water bottle, ibuprofen and bed was the only thing on offer. It didn’t touch the pain which was an endurance to get through. Now we have people like Professor John Guilleaud (University College, London) saying menstrual pain for some is as bad as having a heart attack. Back then I was told I had a low pain tolerance. I thought everyone suffered as I did but I was weak. (Hollow laugh.)
It was a matter of knowing it would end. That day one was worse than day two. I just had to keep breathing. Work was tricky. I knew I’d be ill once a month so I could never afford to have any other sick leave. I only had a small window once my period started before I began vomiting, so travelling home from the centre of London was nerve wracking. I have puked in a lot of public places. It just added to the humiliation.
It ruined holidays, parties, romantic encounters, fun, work, play.
A gynaecologist told me I was perfectly healthy and would get better after I gave birth. She was wrong!
On the ward after my emergency caesarean, I didn’t ask for pain relief and a nurse asked why. The truth was the pain was nowhere near the pain I endured every damn month – it was a breeze in comparison. After the boys were born, contrary to what I’d been told, it got far worse and I was in excruciating pain for 3 weeks out of 4. I was dismissed by the doctors, told I was neurotic. Despite me insisting the pain was all related to my menstrual cycle, I was told it was probably IBS. It’s hard to keep going when professionals tell you there’s nothing much wrong with you and your body insists otherwise. It took eight years before I had a laparoscopy which showed I was chock full of endometriosis. Bits of my insides were glued to each other. It was such a relief to be told that I would have a simple operation – “a spring clean” – and all would be well.
Of course, all was not well. There is no cure for endometriosis. With my first period post surgery, back came the pain.
No treatment is perfect. No treatment cures. They dampen symptoms but produce their own side effects. Mine lists the following: abdominal/pelvic pain, ovarian cysts, back pain, headache/migraine, nervousness, dizziness, nausea, bloating, breast pain, weight gain, acne, depression, changes in mood, loss of interest in sex, itching/skin rash, and puffiness in the face, hands, ankles, or feet. Such fun!
People don’t know what endo is, or they think they do and imagine it’s a bad crampy period. There’s no recognition of how debilitating it is. How destructive. How it ruins lives.
I sometimes wonder what I could have achieved if I wasn’t derailed by this damn condition so often. I know there’s no point on dwelling on what-ifs though and bumble on as best I can, but it niggles at me. Just when I make headway on a project along comes the endo to fell me. Everything I do has to be done when I can manage it and everything is stop-start.
That things still haven’t improved in the decades I have suffered says much about the lack of importance afforded to women’s issues. It’s heartening to see #endometriosis trending on twitter, but watching this video is heartbreaking.
Hell yes, endometriosis care needs urgent improvement.
Smash Lits with Jane Flett
I published a superb short story – Shadow Puppetry over at The Forge Literary Magazine. Please do read it; it’s one of our nominations for the Pushcart Prize and is something special. Thank you Jane Flett for taking part in one of my Smash Lits interviews.
1) How do you organise your bookshelves?
Alphabetically and also divided into novels/short stories/poetry. Also I have a special section for books of witchcraft and cults, and one for Stephen King and other books to read in the bath.
2) What is your favourite cheese?
A really sharp cheddar.
3) Bacon VS Tofu—who wins? Why?
Tofu—specifically Mapo Tofu with a holy fuck-ton of Sichuan chilli bean paste. Bacon is pretty tasty but tofu is a sponge you can turn into whatever you like, and that is a quality I find appealing in food. Possibly also in humans.
4) What colour is Wednesday?
Black and white like piano keys.
5) You have to swap places with one other writer for a week. Who and why?
Alissa Nutting, to see how it feels in the glorious and filthy innards of her brain.
6) Have you ever had your fortune told?
Of course! I’m a witch, I do tarot all the time. Also I have a soft spot for those old arcade machines you place your palm on and they give you a printed out page of your destiny.
7) What lighting do you have in your living room?
Lamps and candles, and sometimes a red rope light.
8) What’s your most vivid childhood memory?
Splitting my chin open at playschool because I dared a boy he couldn’t stand on a wobbly block for 5 seconds. He couldn’t. Me, I could do it for 4 seconds and a half…
9) Who is your favourite Neighbours character?
I don’t know anything about Neighbours, except that when I was younger I had a cassette tape of Kylie & Jason and now I have Especially for You stuck in my head. So them.
10) Did you have an invisible friend when you were younger?
No. I did have a hand puppet of a hedgehog called Hedgey though, and also my brother and I made friends with a napkin ring that had an alter-ego of a fat lady opera singer called AwMiLaw. She would fly around the kitchen and sing opera songs in a beautiful and not-at-all annoying voice.
11) What sandwiches would you make for a picnic with Zadie Smith?
I like the number of food-related questions in this interview. I would take a fondue kit in my wicker basket and she would find that charming.
12) You are wallpaper. What is your pattern?
The wallpaper that’s in my kitchen and author photograph: big 70s red and orange poppies on a white background.
13) What was the last text you sent?
“Ahh we are so hungry!”
14) Do you think Antiques Roadshow is boring?
I don’t know it, can we talk about Gladiators instead? I have a lot more feelings about Gladiators. We had gerbils called Jet and Lightning as kids and I spent a lot of time pretending to do the Eliminator in the school playground.
15) How much money did you spend yesterday?
I am in Madrid, so a lot more than usual! About €50 on Colombian baked goods, calamari sandwiches, and many many beers in the gay bar.
16) What is your most played song at the moment?
9–5 by Dolly Parton (this is almost always true).
17) What question should I have asked you?`
“Can I get you a drink while you answer these questions?”
18) What’s your favourite swear?
Cunt. I like that it upsets people who think vaginas are horrifying.
(I agree wholeheartedly. What’s up with that? Cunts.)
19) Do you like spiders?
Sure. I haven’t met all of them though.
20) Mermaids, dinosaurs or unicorns?
One glorious hybrid to rule them all.
(A merocorn?)
Tastes Like Fear by Sarah Hilary
Sarah Hilary’s London is full of shadows, darkness, underground places where people can vanish; places full of people, estates, tower blocks, all with blind spots and corners around which people disappear. A young girl running away from something, or someone, causes a car crash. Another girl is missing. Around a table, three well behaved young girls eat dinner served by a slightly older girl, presided over by a man. His name is Harm. On an estate an elderly woman watches warily from her window, noting names and times of the kids outside running riot. What links these people?
This is the third DI Marnie Rome book and if you are a fan of the others in the series you won’t be disappointed. Hilary’s customary intelligence and storytelling verve are in full force. It’s amazing how chilling words on a page can be. There’s a smashing twist that I genuinely didn’t see coming, oh, and tantalising snippets woven in about Stephen Keele, the killer of Rome’s parents, whose story we MUST learn one day.
I can’t say more for fear of spoilers, so I’ll leave you with this:
“The kitchen reeked of wax. Fourteen candles burning but they didn’t make it brighter, just dragged in more of the darkness. Greedily, the way his pain pulled at her, at everything.”
The Museum of You by Carys Bray
When Carys Bray writes, woah, she sure does get you in the feels. Both “The Museum of You” and Bray’s first novel, “A Song for Issy Bradley,” deal with the aftermath of death, but Bray has a wonderful way of illuminating darkness with humour and empathy so the novels remain a pleasure to read.
Clover Quinn’s mother Becky died six weeks after Clover was (unexpectedly) born. Now 12, Clover lives with her bus driver dad, Darren, whose silence on the subject of her mum only fuels her desire to know more. In the long summer holidays, inspired by a school trip to the Merseyside Maritime Museum, Clover attempts to curate an exhibition of her mum, using bits and bobs of belongings that have remained in a cluttered, untouched bedroom for years. Where the novel is strongest is in the relationship between Clover and her dad and in the depiction of him adapting to a life that looks entirely different from how he’d once hoped. Darren is a wonderfully sympathetic character, flawed as all of us are, and very recognisable in his attempts to be the best parent he can.
“He could make jam or something. He remembers the things mum used to make with the raspberries: cheesecakes, trifles, tarts, fools and mousses. They could have a go, him and Clover, she’d like that. He has had these ideas before but it’s a struggle to make them materialise; by the time he gets home there will be something else to occupy his thoughts – the detached radiator, the hall walls, the worry that there may be something else she needs.”
The novel features a supporting cast of characters, the most interesting of whom is Jim, Darren’s troubled brother in law who has mental health issues and is hopeless at self-care. Describing Darren’s feelings towards him – “His kindness comes in bursts and he tires quickly. It was easier in the early days, when it seemed as if it was going to be more of a sprint than a marathon,” succinctly describing the fluctuating resolve of trying to help someone desperately needy who doesn’t seem likely to want to, or be able to, ever change.
Mrs Mackeral is the malapropism yelling next door neighbour who is maybe a little too cartoonish to feel fully realised, but provides some amusing moments. Colin is Darren’s best mate who along with his sister, and Darren’s dad, form a kind of family unit around Clover. Whilst death underpins the narrative, there is a sense of optimism that this wonky group provide.
Clover is deftly drawn and is a character to cheer for. The story is heart warming whilst not shying away from truth.
Towards the end of the book Bray writes,“Grief never goes away. And that’s no bad thing – it’s only the other side of love, after all.”
How beautiful is that?
This is an emotionally honest novel written by a writer who marries real insight with engaging writing.
There’s nothing more boring than other people’s dreams…
I dreamt about my dad. I was in a large block of offices full of people and saw him at the top of some stairs. He was wearing a suit, shirt and tie. He looked more 70’s dad than anything (maybe my subconscious translating the priests’ assertion that dad would have a “new and glorified body” and assuming pre heart attacks would be a prime point in time.)
I said “I really miss you.”
And he said “I really miss you too.”
And we hugged.
He said, “You’ll be coming to the thing tonight though? I’ll see you again there.”
And I said, “Yes.”
Then, in my dream, I thought, I mustn’t forget this. Remember.
I went up to dad and I said “I really miss you.”
And he said “I really miss you too.”
And we hugged.
He said, “You’ll be coming to the thing tonight though? I’ll see you again there.”
And I said, “Yes.”
But I didn’t know what the thing was. I didn’t know how to get there. I retraced the conversation over and over, looking for clues.
I went up to dad and I said “I really miss you.”
And he said “I really miss you too.”
And we hugged.
He said, “You’ll be coming to the thing tonight though? I’ll see you again there.”
And I said, “Yes.”
I went up to dad and I said “I really miss you.”
And he said “I really miss you too.”
And we hugged.
He said, “You’ll be coming to the thing tonight though? I’ll see you again there.”
And I said, “Yes.”
I went up to dad and I said “I really miss you.”
And he said “I really miss you too.”
And we hugged.
He said, “You’ll be coming to the thing tonight though? I’ll see you again there.”
And I said, “Yes.”
And this looped on for who knows how long. And when I woke up I thought I mustn’t forget this.
I went up to dad and I said “I really miss you.”
And he said “I really miss you too.”
And we hugged.
He said, “You’ll be coming to the thing tonight though? I’ll see you again there.”
And I said, “Yes.”
I really miss my dad.
The grief underpins everything. Sometimes it feels dormant, but just when I think it is safer now, less spiky, it washes over me like an unnoticed wave that I have my back to, plunges me right back into salt and panic.
Last week I spent time with two gorgeous women who reminded me of who I am. This is what friendships should be like; time spent with people who don’t judge, who don’t monologue at me, who don’t insist everything has to be funfunfun, who understand that life is complex, who don’t leave me exhausted and drained, who don’t put me down, but instead lift me. I am so grateful to know these smart, thoughtful, ace people. Thank you KG and KM!
(Photo taken from Worthing pier yesterday. A beautiful day with Si. Calm waves, blue sky, love.)
It’s difficult…
My first online blogging was done via LiveJournal way back whenever. I had a small group of readers whose LJ’s I also read. We commented on each other’s posts and it all felt cosy and fun. I was a little wary about being discovered so I used a pseudonym and fake names for all the folk I wrote about, but otherwise it was truth all the way. Then I set up “A Salted”, a blog in which I discussed working in a big bookshop and writing and reading. It was less gossipy than LJ, but still it was definitely a personal blog. Then came this one. I have way more publications to my name and I wanted to feature them and promote my writing. I also review books. Sometimes I interview other writers, beginning the Smash Lits interviews because I get so incredibly bored by all the writer blog tours. I prefer to read blogs that make me feel I am reading about a person. I hate twitter accounts that are repeated links to someone’s writing and RT’s of praise and fake reviews. (Five *****’s to Sara Crowley’s extraordinary story!) Facebook pages full of dry self promotion. Blogs that drone on. Who cares?
I have become so cautious about what I say, I don’t tell the truth about my life to anyone really. I am fake and polite and careful at all times. What would happen if I told the truth? Oh my goodness, people might know how I feel and what’s going on, and then what? How…exposing.
We live at a time when I can watch “Reality” TV shows in which young people will have sex, get drunk, show their entire bodies, but never reveal themselves. It’s a curious honesty. Big Brother contestants sleep together unabashed, yet refuse to discuss whether or not they might date as if suggesting they might want a relationship opens them up to a potential embarrassment far greater than showing their genitalia to the cameras. It feels as if having sex with someone is fine, but wanting the hand-holding, chatty bit of a partnership is too much.
Random thoughts:
It’s six months since dad died and it very much feels like my life has divided into before he died and after. After has been miserable as hell. I look at pictures or think of things and go, ah, yeah, that was before dad died. That was before I lost the weird innocence I didn’t know I had.
My new job is great. It’s the one bright spot in an otherwise terrible year.
There are so many things I don’t talk about. I keep secrets and lock away so much sadness that I may explode.
People say you find out who your friends are in times of crisis. What if you find out you don’t have any?
At my dad’s funeral the church was full. He was such a friendly, popular guy many people wanted to pay their respects. I don’t know who would come to mine; not so many, that’s for sure. I went to a neighbour’s funeral last week. Her husband died 25 years ago and they didn’t have children. After all her struggles, her endurance, her keeping on with a smile and joke, life ended. That’s what it does. She was 96 and she had told me all her friends were dead, even the younger ones.
We get through our lives however we do, and it ends. That’s a certainty. I will die. You will die. Everyone we love will die. And in the meantime I’m alive, I’m sad, I’m pissed off, I’m increasingly afraid my life will end before I have written my fucking novel, I’m fat, flawed, exasperated, but I do my best to put some good out into the world, to be a decent person, to keep on keeping on even though the ground has turned out not to be solid and it all feels so bloody hard.
My most used saying of 2016 so far is, “It’s difficult…”
My name is Lucy Barton by Elizabeth Strout
Strout is an exemplary storyteller and having adored Olive Kitteridge so damn much, I trust her to tell a quietly unfussy and moving story. MNiLB is narrated by Lucy Barton who looks back at a long stay she had some time in the eighties in hospital recovering from a post-op infection. Her husband and children were largely absent while she recuperated, and her mother, who she hadn’t seen for many years, flew, for the first time, from her small rural home in Amgash to New York. Remaining by her bedside for several days and nights, her mother offers up anecdotes as conversation; tidbits of other’s lives, gossip about neighbours Lucy might recall. Morality tales in the main. Fragments are revealed, as they are in our actual memories, this happened, and this, do you remember? And the pieces of the puzzle are laid out until, oh, yes, we see the picture now. Lucy’s childhood, one of emotional deprivation as well as physical, is revealed. The agonies of not being a fit remaining throughout her life no matter how she learned to blend in with the help of money, husband, kids, a writing career, a New York life.
“Loneliness was the first flavour I tasted…”
Lucy finds a voice through writing, but can’t express herself to her mother. Theirs are conversations where what is not said matters more than what is. We learn obliquely about her father’s PTS and subsequent cruelty, the humiliation he heaped upon her brother, Lucy’s marital problems and her friendship with a neighbour who dies of AIDS.
“It turned out I wanted something else. I wanted my mother to ask about my life. I wanted to tell her about the life I was living now. Stupidly — it was just stupidity — I blurted out, ‘Mom, I got two stories published.’ She looked at me quickly and quizzically, as if I had said I had grown extra toes, then she looked out the window and said nothing. ‘Just dumb ones,’ I said, ‘in tiny magazines.’ Still she said nothing.”
The hopefulness that she can share and connect is calmly devastating.
Glowing at the centre is her relationship with author/teacher, Sarah, who instructs Lucy to write the pages we have read. “This is a story about a mother who loves her daughter,” Sarah says about the writing Lucy has shown her. “Imperfectly. Because we all love imperfectly. But if you find yourself protecting anyone as you write this piece, remember this: You are not doing it right.”
This slim novel’s layers peel back to reveal the lumpy truths of a life and its relationships and lays them out for us to examine and recognise. Superb.
The Way We Die Now by Seamus O’Mahony
My dad died on February 15th and my world transformed. I am grief-stricken. It’s no surprise that I have turned to books seeking solace, or at least some kind of understanding. The first book I read was “When Breath Becomes Air” which in retrospect I found unsatisfactory and unhelpful. “The Way We Die Now” though has been a strangely compelling read despite its rather stark message. Right from the introduction O’Mahony warns us, “This is not a book of consolation; death is simply affliction and the end of our days. We are frail and vulnerable animals.”
He argues persuasively and passionately against the over medicalisation of death. As a Consultant Gastroenterologist at Cork University Hospital Dr O’Mahony has seen many people die and he uses a mixture of personal anecdotes, patient anecdotes, and high profile celebrity deaths, to highlight how our society places faith in medicine and expects to live despite disease. He explains how many patients receive what he believes to be useless treatments; procedures that take place for the sake of the hospital being seen to do something, often at the expense of a patient’s comfort. CPR that takes place after death is common apparently (and he is clear that CPR is rarely successful as it is in medical dramas. It’s a brutal technique that can leave people permanently damaged if they do survive.) Speaking about the overuse of PEG feeding he says “The procedure became for me a symbol of the medicalisation of death, and of the failure of modern medicine to care humanely for those most in need of its help.”
He is wonderfully dismissive of Kugler-Ross’s famous five stages; denial, anger, bargaining, depression and acceptance. “The power and terror of death refuses to be tamed by workshops, by trite formulae.” The myth of a “good death” is exploded. It is likely we will die whilst sedated and pain-free thanks to a syringe driver. We won’t make profound death bed statements, we won’t even speak. We will be removed from our own death, but that saves us from dying in terror and pain. There is rarely a peaceful, stoic acceptance. That word terror catches me and makes me realise I had some fairy story death narrative in my head where gradually people slip away. Here’s my comfort, such as it is, my dad died unexpectedly. His heart stopped. He did not know he was dying. We did not have the agonies of having to decide for him what interventions he should endure so that we could keep him with us. I fear I would have insisted on all of them, though I hope I would not have.
O’Mahony writes he was “…deeply impressed by how Catholic ritual – after the deaths of my great-uncle and father in-law – guided the bereaved during the days immediately following their deaths.” The issue in a secular society where “Evangelical atheism has accelerated the flight from religion” is how to find this kind of comfort, and he suggests we worry less about believing and be content with simply belonging. This really chimed with me. Dad had a full Catholic funeral; his body was received into church the night before and his priest led us gently through the rituals and beliefs. During the funeral he took the same care to explain. It felt unimportant I don’t share those beliefs. I was immensely grateful for this acknowledgement of loss and grief, this solemnity, this tribute to my dad.
The book explores “deluded optimism” where patients, doctors, and family and friends collude in a pretence there is hope where there is none. What bloody fools we are that we think we can tame death. There is so much that is interesting here; the fact that patients who have combined oncology/palliative care live on average 25% longer than those who forge on with treatment (seeing hospices as an admission of failure), and that doctors apparently often choose not to undergo extensive treatment themselves. The idea that doctors offer treatment because they don’t know what else to do and need to be seen as doing something is troubling, yet the instinct is to want them to do every possible thing to save the lives of those we love.
How afraid we are, of course, and we are right to be. There’s no magic here, but this is a cool, intelligent look at death, right in its ghastly, deathy face.
When Breath Becomes Air by Paul Kalanithi
Paul Kalanithi spent years training to be a neurosurgeon. He was one of those dazzling people who could have followed any number of paths, studying literature, philosophy and medicine with equal vigour. He trained in neurological surgery at Stanford University, believing brain surgery was his calling. The ridiculous workload (100 hour work weeks) and literal life and death operations, his striving for compassion and excellence in everything he did, his relationship with his girlfriend, Lucy, also a doctor, are all examined in the first half of this book. Kalanithi’s love of literature shines as brightly as his love of medicine.
When he began to suffer with excruciating back pains he wondered if he had cancer, then tried to push that concern away after an x-ray came back clear. He got weaker and the pain intensified. Eventually he had a CT scan, “I flipped through the CT scan images, the diagnosis obvious: the lungs were matted with innumerable tumors, the spine deformed, a full lobe of the liver obliterated. Cancer, widely disseminated. I was a neurosurgical resident entering my final year of training. Over the last six years, I’d examined scores of such scans, on the off chance that some procedure might benefit the patient. But this scan was different: it was my own.”
Where the first half of the book is concerned with his striving to be the best surgeon he can and to help others deal with unthinkable disease and their fragility as humans, their lives literally in his hands as he operates on their brains, the second half is him looking frankly at his own situation as he makes the transformation from expert doctor to needy patient.
“Once I had been diagnosed with a terminal illness, I began to view the world through two perspectives; I was starting to see death as both doctor an patient. As a doctor, I knew not to to declare “Cancer is a battle I am going to win!” or ask “Why me?” (Answer: Why not me?)”
“Like my own patients, I had to face my mortality and try to understand what made my life worth living…”
It’s his clear thinking that engages the reader so fully. We, and everyone we know, will die. It is the awful truth we spend our days not looking at and here is someone who has studied the brain extensively, who knows what it is to look right at death, someone who writes with zinging clarity, preparing to share his wisdom with us so that we may go forwards in our own lives in a more meaningful way.
“The physician’s duty is not to stave off death or return patients to their old lives, but to take into our arms a patient and family whose lives have disintegrated and work until they can stand back up and face, and make sense of, their own existence.”
Everything Kalanithi had worked so hard to achieve in his future, his ambitions and hopes, were lost with diagnosis. He had to examine what was most important to him. As he wrestled with choosing between literature and medicine before specialising, he wrestled again. He returned to surgery for a while, completing his residency with customary excellence despite everything. Offered his dream job he briefly allowed himself the fantasy of accepting it, before turning it down. He and Lucy decided to have a baby. He wrote most of this book. In the end it all boiled down to the deeply personal, as it does for us all. The things that matter are the relationships we have. It’s family and friends and love that count.
This is why When Breath Becomes Air is successful. We are desperate for clues how to live, how to die, how to cope. It’s unfair to expect so much from a book. Its unfair that Kalanithi died when he was 37. Life, and death, is not fair.
Sara Crowley 