What’s it like to have open heart surgery? Part III

Time flies when you’re diligently attending rehab. It’s been more than eleven months since I had my aortic root replaced. I last blogged about my experience six months ago (what!), but time has been moving at a strange rate what with my improving levels of stamina and the increase of daily responsibilities that come with recovery. You feel like you’re on a plateau, when really you’re still marching up that hill.

I know you’re only here for sexy Instagram before and after shots, so…

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When I left you, I was talking about my time on the Critical Care ward (ICU). No one in the history of human endeavour has ever said “Critical Care – fun for all the family!”, and I know if you’re reading this in anticipation of your own surgery, you’re likely not going to be expecting a spa experience. I’ll be honest – it was not fun. But. The worst thing by far was the inability to understand that what I was experiencing was temporary.

To recap – I’d just had my chest sawn in half and cracked open like a walnut. I had two significant leg wounds I wasn’t expecting. Entering my body just above my waist were two lung drains roughly the same thickness as tubes of Smarties. These were all surprising and new sensations I had no frame of reference for, and the first thing your brain does when faced with startling new stimulus is to think, This is my life now.

Everyone kept telling me, no, this is your life now.

For pain relief I was given oral morphine, codeine, and, hilariously, plain old paracetamol. None of this helped. I did not sleep. I couldn’t accept so much as a mouthful of food. I watched the nurses come and go in day and night shifts, on, off, on, off. Time lost all meaning. By day three I was… unhappy. I remember a group of doctors at the foot of my bed puzzling over my body’s refusal to accept pain relief.

“Do we use ketamine in this hospital?” one of them muttered.

God, I wish the answer had been yes.

Instead, I was given an epidural. When I try to describe this experience, my brain throws up a wall of static because this was… unenjoyable. It also turned out to be completely useless. In the end, I was given a personal morphine pump, which is a bit like an opiate vending machine where you just mash the button in the hope of blissful oblivion. None of this is normal, by the way, but in general the young do experience more pain than the old. I was just the lucky millionth customer.

I think it was day three when my drains came out. In the end, this was the only thing that gave me relief. With the help of my morphine pump and a canister of gas and air, I was perfectly happy for the nurses to just yank those suckers out. That’s literally how they do it. Two seconds of internal carpet burn and a couple of neat little stitches. Honestly, it was wonderful. The pain was by no means over, but I now had one less problem to live with.

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Eventually a bed was found for me on a regular ward. I was profoundly full of morphine by this point, so I remember the trip down the hall as something akin to The Dam Busters complete with explosions and search lights. I just remember thinking This bed is moving too fast and they’re going to clip a door and I’m going to just die. It was the middle of the night, eerily quiet. When we arrived at the ward, I was given my own private room, which I would later understand as a blessing. At that moment, in my drug-addled brain, I’d been wheeled into an empty grey cell where I would be left to die. Everything equated death in my mind that night. That was the drugs talking.

A word on opiates – I started hallucinating wildly as soon as I left Critical Care. Some people experience this, others don’t. It was never frightening, but it was impossible to tell reality from dreams for at least two days, and even weeks afterwards I had to ask people I knew if they really had come into my room at night to stare wordlessly at me like Christopher Lee’s Dracula. It’s hard to tell yourself everything’s going to be okay when Madame Tussaud shuffles around your bed, hanging up death masks of Louis XVI.

On the ward

From here, I’m happy to say, I improved daily. Bodies – even my delicate Marfanoid one –  work fast to heal. I still couldn’t eat much, so the catering staff – who are perfect angels working under very strained circumstances – made me ice cream milkshakes to try to get calories into me. It took me entire afternoons to get half of one of these down me. Everything becomes an epic battle, but with an army of kind, hilarious nurses and healthcare assistants behind you every step of the way, the impossible becomes doable.

As I regained my grip on reality, I had to come to terms with how radically reality had changed. My usually dry skin had become incredibly oily. My hair – everywhere – had turned ginger and was growing at an amazing rate. My fingernails, too, were like stalactites. The nurses started calling me “That poor girl” because my period arrived out of nowhere. Swollen, sweating and covered in bruises, I resolutely ignored my chest wound. I’d been trussed up in a binder, so I was yet to see it, and even the thought turned my stomach. I’d spent a year on the waiting list worrying about how it would look, how much I would hate it, what a big deal strangers would make out of it.

Naturally, I glimpsed it by accident.

A nurse had removed my binder to wash me, and my eyes flickered open long enough to register a puffy yellow mass of bruises and iodine. I think I must have groaned because the nurse said, “It’s low down and very neat. I see a lot of these. This is a good one.”

Well, I thought. There’s nothing I can do about it ether way.

Every day, my task was to get out of bed at least once and sit in the chair. My room had a bathroom, but I couldn’t walk to it, as hard as I tried. I wanted to move. I also desperately wanted to stay in bed. It took two nurses to get me up and ease me back down every time. Sometimes, it was just impossible. That was the worst. Having to be told to give up. I can still hear my Nigerian night nurse telling me, “If you say sorry one more time, imma smack your bottom”.

But the trend was an upward one. Every day, I lost another tube. No more neck cannula, no more temporary pacemaker. One day I realised I could speak in short sentences without much trouble. Another day, my nurses walked me to the bathroom to brush my own teeth. Soon, it was time to have my first solo shower, perched on a stool. I felt like a gladiator. My appetite came roaring back, and though I couldn’t realistically eat much at all, it was all I could think about. If you’d offered me a Dorito, I’d have bitten your arm off. That’s your body healing – urges become commands. Eat. Sleep. Eat more. Sleep again. OBEY.

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The view from The Chair

I was in hospital for a total of ten days. Usually, someone undergoing an aortic root replacement will be sent home on day four, but I was spiking mysterious fevers every evening and needed antibiotic fusions. It turned out I had antibiotic resistant bacteria on my lungs. This sounds horrifying, but it wasn’t the same thing as having an infection, so I used the extra time to work with my physiotherapist, learning to stand without using my arms, hobbling increasing distances every day, and then – like an actual Jedi – one single stair. Each tiny new achievement felt like vaulting over a mountain. Here’s me at day seven, astonished to be standing up unsupervised:

Day 7

That’s the face of someone grudgingly impressed by the tenacity of their meat cage.

Next time, I’m going to write about being discharged and adjusting to life on the outside.

Read on for part four.

Call for submissions: Disturbing The Bodies

Attention, women writers of the UK! Introducing Disturbing The Body, an exciting new ‘speculative autobiography’ project published by Boudicca Press. Submissions are open. We can’t wait to see what you come up with.

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We’re looking for pieces that explore women’s personal experiences of fractured relationships with their bodies. Body themes could range from experiences with major operations, chronic health conditions or chronic pain, dealing with cancer, childbirth, disability, or any moment where a woman can feel powerless and out of the ordinary against her own body.  Your piece must be about something you personally experienced, but you may be as creative as you please. Think the arch fantasy of Angela Carter, the anxious surrealism of Charlotte Perkins Gilman, and the body horror of Margaret Atwood. Tell us about your body, your way.

Review: The Man Who Came Down The Attic Stairs


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I’m fairly new to comics and graphic novels. Since my surgery I’ve been reading almost as many comics as novels. Being forced to slow down has had its advantages – I’ve been getting through some brilliant graphic works. The latest is Celine Loup’s The Man Who Came Down The Attic Stairs.

Celine Loup is an award-winning cartoonist seen in The New York Times, The New Yorker, Penguin, and many more prestigious publications. Her work has been honored by The Ignatz Awards, Best American Comics, American Illustration, The Society of Illustrators, and CMYK. She is currently working on Hestia, a serialised erotic Gothic comic set in Ancient Greece.

The Man Who Came Down The Attic Stairs is as Gothic as they come. A loving couple expecting their first child move into a beautiful country house. When Emma’s husband goes to open the locked attic room, she hears a commotion and rushes to investigate. She finds her husband unscathed, but somehow… different.

It’s a Gothic interpretation of the anxiety surrounding motherhood written at a time in Loup’s life when she was ambivalent about starting a family herself and wanted to explore those difficult feelings in a safe place. That’s good horror, really, isn’t it? A sandbox for our worries.

I really enjoy Loup’s art style. It’s painterly, and bodies appear soft and natural. Wide sweeping vistas zoom in to uncomfortable close ‘shots’, raising the tension of isolation and paranoia. I love how Loup conveys loneliness through groups of almost empty panels lingering on repetitive household noises, on tasks that will never be complete. Always present is the baby’s scream, in wavering bold text – is she an exhausting burden, or is she trying to warn Emma of something?

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There’s a lovely consciousness throughout of the absurdity of Gothic, that Castle Of Otranto camp that lovers of the genre embrace. The giant portrait of Freud behind the therapist’s head is very funny, but also perfectly illustrates the weight of outdated psychology hanging over women with postpartum depression and psychosis. There’s one particular moment of the uncanny that stands out – simple, elegant and absolutely chilling – but I won’t give anything away here.

Overall, this is a slice of well-executed psychological horror I’ll be returning to. Other reviews have made comparisons to Shirley Jackson, and they are spot on.

A belated happy Halloween to you all!

Review: A Suggestion of Ghosts

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Ghost stories of the nineteenth century are enjoying a new lease of (un)life at the moment, with publishers scouring the archives for stories that have never since been republished or anthologised. Anyone who loves the genre knows the titles that regularly enjoy fresh publication, and, classic and beloved as they are, it can feel like they take up unnecessary space. There’s a rich untapped seam of ghostly tales, especially by women, and Black Shuck Books are working to rescue these stories from obscurity.

I actually received A Suggestion of Ghosts last Christmas and haven’t had a chance to get into it until now, but it’s spooky season and I felt the need to expand my knowledge of hitherto unknown authors.

First of all, what a fun cover. You know you’re in for a luxurious ride of delicious cliches. The collection is full of ancestral homes, hidden passageways, indomitable heroines with an eye for eligible bachelors, and a whole crew of spectres from the beyond. All the good stuff.

Of course, a good ghost story isn’t merely about a ghost, and there’s a range of interpretations of the form in A Suggestion of Ghosts. The collection shows what women authors of the latter half of the nineteenth century were doing with the ghost trope; fully indulging in the high Gothic or being more playful, working across genres.

The editor, J.A. Mains has typed out the stories by hand rather than relying on scanning software, so original spelling is preserved, which I appreciate. I love the biographical information on the neglected authors, too, some of whom published anonymously or only once. Others were prolific, like Katharine Tynan who published over a hundred novels and was championed by WB Yeats. There’s a real mix here. Tynan, with her knowledge of Irish witch lore, managed to elicit an “Oh, gross!” from me, which isn’t easy.

There are a couple of switcheroo type stories where the ghostly element is a device for a more straightforward romance. These were popular in ladies’ magazines, being less risqué than Gothic tales or sensation stories. In fact, they were generally aping them. The Ghost of the Nineteenth Century by Phoebe Pember is one of these, and I didn’t take to it, mainly because it’s full of nasty racist asides. The author was a Confederate nurse during the American Civil War. At the Witching Hour by Elizabeth Gibert Cunningham-Terry is a much better example of an author playing with genre and cutting edge technology in the same vein as Bram Stoker.

There are, predictably, more stories about or by the aristocracy than otherwise. That’s partly a genre thing (a sprawling ancestral home as your setting is basically the law) and partly a class thing (how many working class women of the late nineteenth century had the time, energy or encouragement to write?), but Lady Gwendolen Gascoyne-Cecil’s The Closed Cabinet is actually one of my favourites of the bunch. A young woman staying at her childhood friends’ home encounters rumours of a family curse, and though she laughs to be given ‘the haunted room’, the resulting nightmares lead her to make a terrible choice which might just change history.

But by far my favourite is A Speakin’ Ghost by Annie Trumbull Slosson. No stately homes here, and no dazzling heroines with a queue of suitors. Written entirely in patois, I thought it was going to be a slog to read, but the story unfolds into sensitive study on what ghosts mean to lonely people, to the unwanted, and how a ghostly encounter can mean radically different things to different people. This is why I love ghost stories. I want to see what they can do.

Overall, A Suggestion of Ghosts is an enjoyable collection showcasing a range of authors’ responses to supernatural encounters, ghost hysteria, and Gothic romance. There are authors who enjoyed success in their lifetimes, and those who only ever got one shot. This makes it an interesting and important snapshot of the period, and some of these tales will stay with me for a good while. Honestly, the more of these anthologies the better, and I’m happy to report Black Shuck Books have already published a sequel, which I’ll definitely seek out.

The broadcast that scarred a nation is back

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The tenth edition of The Ghastling is available for pre-order today, and it could not be more beautiful. Nathaniel Hébert has done a fantastic job of lovingly recreating the look of the occult exploitation movies of the sixties and seventies. My Victorian spookfest, Florabelle, sits alongside stories by Alys Hobbs, Dan Coxon, Catrin Kean, David Hartley and many more. I cannot wait for Halloween.

The King of Terrors

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Hellebore #1, the sacrifice issue, is available to pre-order now. There’s an interview with witchcraft expert Ronald Hutton, essays by David Southwell of Hookland and DeeDee Chainey of Folklore Thursday, and something by me on the lost Doom Paintings of Medieval Suffolk. Maria J. Pérez Cuervo has worked hard to create something really special in Hellebore. Tell your spooky friends.

What’s it like to have open heart surgery? Part II

It’s been five months since my surgery, and I am still – touch wood – alive and healing. Actually, I’m feeling great. Please keep that in mind while you’re reading this!

I may have been putting this post off. When I started this series of blogs, my intention was to write a plain description of the experience to give prospective patients a clear idea of what they were going in for. But that approach comes with a lot of responsibility. The absolute last thing I want is for someone to read about my experience and think “No thanks, not today, I’ll pass if it’s all the same to you”. I don’t want to put anyone off, but I also don’t want to pretend it’s a doddle.

It shouldn’t be a shock that living with heart disease is all kinds of annoyance and misery, but I think it does need to be reiterated from time to time. As the staff nurse who greeted me as I walked into the ward said, “This is going to be rough.”

My surgery date was April Fool’s Day because of course it bloody was.

I took my big black bag with me. I wore a plain hoodie and some jeans, and took out all my piercings except my nose stud. Amazingly, they let me keep that in for the entire experience. I signed a form stating exactly what I had with me and what was being left in the hospital safe. My surgery was set for 8am the next morning as that was the slot least likely to be cancelled. Unfortunately, that meant my family were sent away and I was left alone with my thoughts all night.

2BD84076-344C-4426-9CBF-5C5CA63B6622My window was on the ground floor, looking out onto Papworth’s green surroundings. A little out of sight was the famous duck pond. I saw a heron fly over, seeking fish. There was a lock on the window. I looked at that lock all evening. Before bed, I was told to shower and wash my hair with antibacterial gel.

At 10pm one of the surgeons came to see me and discuss valve options. My surgery was planned as valve-sparing, meaning I’d have my own aortic valve reattached when my new prosthetic root was in place, but because that isn’t always possible I needed to choose between a mechanical valve (meaning lifelong blood thinners to stop it rejecting) or a pig valve which could wear out within fifteen years. He explained the various pros and cons of both options, and I made a decision and signed for it. Then he outlined the really fun statistics – mortality and whatnot. With my aorta measuring 4.5cm, it was statistically more dangerous for me to be walking around than lying on an operating table. Average mortality is really, really low for aortic root replacements, even with Marfan syndrome taken into account, and the figures are actually even lower with my surgeon, Mr Nashef. He’s kind of a rockstar.

Nevertheless, it’s quite a thing to sign your name under that statistic, sitting there in your glittery slippers.

No, I didn’t sleep a single solitary wink. It wasn’t so much anxiety as my heart monitor shouting every few minutes to tell the nurse I was having ectopic beats. I told myself I’d have plenty of time to sleep the next day and settled down listening to Rammstein all night. Fight music for punching the Grim Reaper in the eye socket. Before the nurse came to take me away at 8am, I had to repeat the shower ritual and get into a hospital gown and my fancy slippers.

I was wheeled to theatre. I could have walked, but they just default to wheelchairs for some reason. I’m the kind of prisoner who jokes on the way to the gallows. Somehow the nurse and I were talking about crossword puzzles. Surprisingly, I was then held in a queue, parked up with a row of old men in identical gowns. There was one young girl, bald from chemo, but she was sent to the other side of the room. No one spoke. Staff whirled around. It was cold. I kept telling myself it would be over soon. There’s really nothing else you can tell yourself at that point.

My team introduced themselves. It takes a lot of people to replace one aortic root. I met so many people, I hardly took it in. When my two anaesthetists asked if I had any questions, and because my brain is the way it is, I blurted out something about the possibility of waking up in the middle of it all. And yes! That can happen if you have really lousy anaesthetists. Now you know. Hooray for me for asking that unbelievably stupid question at that precise moment.

I was wheeled into a small, chilly antechamber with a bed and several nurses, as well as my (not lousy) anaesthetists. Here I would be given a sedative through a cannula, followed by my general anaesthetic. I think they also attached me to some monitors in here, though my memories drift into vapour at this point. I can remember holding a nurse’s hand and saying “Just feel free to mess me up” as the drugs took hold. They do the job – you feel drunk and accepting, and full of big hilarious love. I’m pretty sure I told everyone in that room they were perfect angels. I wasn’t aware of them inserting the larger cannula that goes into the underside of the wrist, and for that I’m grateful.
wfms-usability-ehr-041_0I was in theatre for seven and a half hours.

I don’t remember waking up in Critical Care. I’m told one of my aunts was there to witness me first opening my eyes, and I gestured at the ventilator tube down my throat. I was worried about that part, waking up with the tube, but I don’t remember it being uncomfortable. My aunt thinks I was gesturing apologetically, as if to say “Can’t speak”. I certainly wasn’t panicking, but the nurses are prepared for that eventuality and just sedate you again if you’re a flailer. It’s rare, though. They have to leave the tube in until you can prove you can breathe without it, and though I don’t remember it being removed I know the bottom of my lungs were some of the last parts of me to wake up, so breathing is a lot like when you’re wearing a corset – upper lungs only.

When you come round, you’re on a lot of medication. It’s not like waking up from a small procedure. My family tell me I looked very peaceful and amazingly healthy, and if it weren’t for the enormous bag of spare blood and all the wires, I’d look like anyone else having a pleasant nap. From my perspective, I felt strangely immobile. I knew I couldn’t move, and though it wasn’t panic I was feeling, it was very unfamiliar. I was alive and relieved but I’d been airlifted into some new reality and yesterday was a million miles away. Slowly, very slowly, as I slid in and out of sleep, I became aware of all the things attached to me. I had tubes coming out of just about everywhere, but at that stage no pain. Weirdness, but no pain.

You’re never left alone at this early stage. I had a nurse called Rose – I think? – sitting right by my face all night, mopping my brow and comforting me. I was whispering all sorts of hoarse nonsense to her, and she just smiled and agreed with me. Another nurse was able to tell me that the girl with the bald head had got through her surgery too. I asked him to tell her I was proud of her (there’s that big hilarious love again).

I was able to move my arms a little, but Rose brushed my teeth for me and kept my glasses clean, giving me small sips of water. I was sweating like a pig. Your body is cooled during the surgery, so when you wake up your ability to gauge temperature is completely out of whack for days or weeks. I could only speak in whispers. Every physical act was a monumental task, but at least I was in bed with nurses doing everything for me…

Hollow laughter.

Once upon a time, heart patients were kept in bed for weeks. Those days are long gone. Never mind that your feet are made of concrete and the floor is so far away you can barely dream of it, on day one you’re expected to get out of bed and into a chair. Lying still is an invitation to pneumonia and suffering is the path to enlightenment or something. It was morning, Rose had finished her shift and I had a new nurse who, honestly, I didn’t take to. While Rose had held my hand and dabbed my tears, this new nurse had had it up to here with my shit and was getting me out of that bed even if it killed me, which it quite possibly would.

After open heart surgery, your sternum is held together with internal cable ties. It is possible to break or dislodge them, so you’re forbidden to use your arms to take your own weight. Enter… The Teddy.

American hospitals give you a cute cuddly heart, but here in the NHS it’s a towel wrapped in a sheet held together with surgical tape, and yes, that’s blood you can see. I now have a Pavlovian response to the word ‘teddy’. It’s a sickening helpless fear, and I’ll probably never leave it behind. When you hear “Okay, hold onto your teddy” you know you’re about to be marched up Everest without an oxygen tank, and nothing you can do or say will get you out of it.

So there I was, clutching Teddy to my chest. The idea was I’d slowly roll onto my side and heave myself into a sitting position using the power of positive thinking. This was when I discovered my leg was all cut up. My left thigh and ankle were bandaged and stiff as a board, and I had no idea why. Wires, drains, catheters, a temporary pacemaker, something coming out of my neck, cannulas, compression socks… wriggling myself onto the edge of the bed was all about avoiding tugging on any of these things and not using my arms. Worse still, when you’re 6’3″, no piece of furniture on God’s Earth is made for your body. The chair was about ten inches too low for my body’s natural levers, so getting me on my feet and down into it was so much more terrible than it needed to be. I cannot tell you how exhausting it was. I’m getting stressed just thinking about it.

And then you’re expected to sit there. Sitting is tiring. Sitting is simply awful. I threw up. They offered me ice cream. I threw up again.

Sitting time was over, now I had to stand again. Without using my arms. From a chair so low it might as well have been a child’s.

“I can’t I can’t I can’t-”
“You can.”
“I can’t I can’t I can’t-”
“You can.”
“Don’t drop me.”
“We won’t drop you.”

Yeah, they dropped me.

I had a nurse either side of me, but I still managed to go straight back down into the chair with all the finesse of a grand piano jettisoned from a Chinook, and the whole of the Book of Revelation flashed before my eyes.

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One for the ‘Gram. I’d gained a stone in water overnight. Pictured: teddy and hateful ice cream.

I stayed on Critical Care for two days. In that time, I managed to eat a teaspoon of ice cream and as many vials of liquid morphine as they would give me. Unfortunately, morphine makes me sick, so that necessitated anti-emetic drugs on top of everything. I was now in pain, yes, but it was controllable, and I was still getting intravenous dopamine, which probably helped keep me doped up enough not to care as much as I might.

Mr Nashef, my surgeon, came to visit me. I was so pleased to see his smiling face, mainly because cheerful surgeons don’t give bad news. My aortic root had been replaced with a synthetic tube as planned, and I’d been able to keep my own valve, which he’d tightened up because it was a tiny bit leaky. The only snag was that one of my coronary arteries had started to dissect and couldn’t be reattached, so I had an unscheduled bypass – known as a CABG – which explained my wounded leg. A vein had been taken from my thigh because when they tried to take one from my ankle it was no good. I’d chosen to have surgery at the right time, Mr Nashef told me. My tissue was like paper, and I wasn’t far off ‘problems’, meaning… you know.

I instantly forgot most of this conversation because I was on drugs. The merciful thing about this part is that you’ll forget most of it.

Anyway, that’s enough fond reminiscence for one day. To be continued.

What’s it like to have open heart surgery?

I haven’t blogged much lately, have I? For a change, I have a solid excuse…

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I had open heart surgery. Planned, elective, but still an enormous ordeal. I’m almost eight weeks post-surgery right now, and I’ve only just summoned the energy to write anything about it beyond the odd tweet.

Before I decided to get on the waiting list, I naturally went looking for people’s experiences. And though I found a few exceptionally lovely bloggers who held my hand and kept me going, there wasn’t that much out there from a young woman’s perspective. And sure, it’s a heart, we’ve all got hearts, but when you’re facing something so massive, so life-changing, it helps to be able to see other people like yourself who’ve been through the same and come out fighting.

If you Google ‘cardiac patient’, you’ll see plenty of this guy:

Reducing-body-temperature-saves-brain-function-in-heart-attack-patientsI’m 32 and I don’t own a pair of overalls. So I wanted to write a detailed guide from my perspective. I can’t promise it will be interesting to anyone with a healthy heart, but the one thing I wanted most of all before my surgery was someone to talk me through the nitty gritty so I’d go in feeling as informed as possible. Not everyone feels that way. One lady I met in the pre-admission clinic didn’t even want to know the name of her procedure, and that’s absolutely fine. Give this a miss if that sounds like you.

Obviously, this is my experience, not yours. I was told about countless things I needed to prepare myself for, and then they never happened. So just keep that in mind.

Regulars will know I have a connective tissue disorder called Marfan Syndrome. Put simply, Marfans means the tissue holding your body together is too elastic to do the job effectively. For Marfs, the whole body is delicate, but the heart most of all. People with Marfans are at high risk for aneurysms, and since I was a teenager I’ve been monitored with an annual MRI as my aortic root (the big part at the top of the heart) has been slowly getting larger and weaker. By age 31, my aortic root measured 4.5cm, double the healthy average. This is the measurement where surgeons recommend Marfan patients think about elective aortic root replacement.

I knew it was coming, but it was still a sickening surprise when my cardiologist referred me to a surgeon for ‘a chat’. It was even more surprising when a nurse took blood for a transfusion, measured me for DVT stockings, and handed me a consent form.

By the time the nurse was finished with me, I was dizzy with anxiety. With the consent form in my hand, I was ushered in to see my surgeon. It was all going so fast. I’d always told myself the surgery was years off. I had no symptoms. I was pretty fit for someone with my condition. I had DMs and a leather jacket, I didn’t need any bloody DVT stockings! Except I did. I actually did.

Mister Nashef is literally the poster boy for the hospital, incidentally.

Mister Nashef is literally the poster boy for the hospital, incidentally.

My surgeon was Samer Nashef at Royal Papworth. I liked him straight away. I’ve never felt comfortable with doctors who are evasive or try to make things fluffy for fear of overwhelming you, and Mr Nashef was willing to take me through everything in a matter-of-fact way that kept me calm and well-informed. I needed the David Procedure, which you can read about here. My heart would be ‘switched off’ and the enlarged section of my aorta would be removed and replaced with a synthetic tube. It would take around five hours, with thirteen weeks of recovery. “It’s huge,” the surgeon said. But I had youth on my side, and the best team in the country.

The choice was presented to me. I could carry on living my life, put off the surgery for a few years, but there would come a point where the risk of waiting outweighed the risk of the procedure, and that point would likely come soon. Some patients are lucky, some are not.

I went home to think about it.

*

From that day on, everything was about surgery. I couldn’t focus on anything else. Every ache and pain had me fighting back panic. I’d look at my chest in the mirror and envision the gnarliest possible scar. Worse, I had no instincts. I went back and forth on all the options, spoke to fellow patients, friends, family, read all I could on the subject, but still it seemed unreal. If the surgeon had simply said “Now is the time” it would all be so much less agonising. If I felt ill, even. In the end, I phoned Mr Nashef’s secretary partly to put an end to the tension. The waiting list was sixteen weeks, but at least I was on it.

Here follows a musical interlude lasting nine. whole. months.

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At the six month mark I got the call to come into Papworth for a pre-admission clinic. There I was weighed, measured for bloody DVT stockings again, had blood taken, MRSA swabs, stood for a chest x-ray, and spoke to my surgical team including the anaesthetist about what to expect. This took up most of a day, so when it’s your turn be sure to take snacks and a book. You’ll be presented with tubes of antiseptic gel to squeeze into your nostrils twice daily, and an equally appetising bodywash for the night before your procedure. You’ll be given a lot of paperwork, too, so it helps to have a folder to keep it all safe. Some of these papers are guides for family, including vital rules about visiting. The importance of Sniffling Cousin Jimmy staying away before and after surgery cannot be overstated. For two weeks before surgery, you can’t take supplements, and that includes vitamin C. Anyone with a cold needs booting out of the nearest window.

There’s a hell of a lot to take in at this stage, and even more to plan for. Prepare thyself. You’ll need to put a lot of thought into the reality of your recovery and spend a fair bit of money to make it as easy on yourself as possible. Remember, you’ll be working with a broken sternum. For a long time, you’ll be so tired even drinking a cup of tea will send you to sleep. How will you feed yourself? How will you wash? What will happen when your enormous husky wants a cuddle?

I needed, at the very least…

A tall, high-backed chair that could be moved from room to room
A recliner chair
A foam wedge for sleeping sitting up
Loads of button-up shirts, pyjamas and dresses
A single bed downstairs near the bathroom
A post-surgery bra
Cushions to protect my sternum when walking or using seatbelts
A travel bag for hospital with everything I needed, but nothing I’d mind losing
And the small matter of someone to look after me 24-hours a day for untold weeks

It turned out I had plenty of time to arrange all these things, because my surgery date was cancelled twice. Can’t be helped, but ugh… it was harsh. The first time, I was all set to go into theatre when two emergencies were blue-lighted in and I had to peel out of my paper knickers and go home. What do I do with myself now, I wondered? Getting back in the car that night was overwhelmingly strange after almost a year of revving myself up for the biggest physical challenge of my life. So I ordered a pizza and let my brain just shut down.

Depression is a major consideration when you’re going into a battle like open heart surgery. When you can’t make plans, can’t enjoy the present, or control your own future, you can’t help but go a little mad. I went numb for two weeks. I couldn’t read books or weather trivial daily annoyances. I’d wake up shouting. When my next date came a couple of months later, I promptly contracted a wisdom tooth infection. The mouth is an infection superhighway to the heart, so my surgical team told me to sit tight and get well. It was bad luck, putting it mildly. I felt like The Girl Who Cried Surgery.

My third date was April Fool’s Day. Ha. Ha! I’d believe it when I woke up on a ventilator. So when I rocked up to Papworth with my bag and my paperwork, part of me was coolly convinced I was about to go home again.

To be continued. Because I’m knackered.

The Fool’s Way VI: Goodbye To All That

This instalment of The Fool’s Way, my summary of silver screen star Nils Asther’s memoirs, isn’t cheerful reading. Just so you’re forewarned. You can catch up on the previous part here.

“Interviewing Nils is like interviewing twins,” wrote Myrtle Gebhart. “He delights in baffling you with his dual personalities.”

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Reading his memoirs, you get that feeling. There’s the carefree Nils who’ll try anything once, especially if it’s risky, and then there’s his paranoid, self-loathing double. I don’t know exactly when he wrote his memoirs. They feel bitty, like he chipped away at them over the years and abandoned them a handful of times. But what’s crucial is that they weren’t published in his lifetime, and they were not published with his consent. The finished product contains a long post-script by his carers about living with Nils in the 1980s and all the trouble he got into (which I’ll talk about later, because oh boy it’s an epic). It feels like an intrusion. We see a deeply anxious man who feels he never had agency over his own life. Someone who longs for friendship but cannot imagine anyone seeing past his inherent brokenness. He worries himself into a frenzy over the things he had already written about with nonchalance. So why not destroy the manuscript? Did he need to write himself into existence, in his own words, even if those words scared him?

I’d love to ask, but I can only imagine him lighting a cigarette and slinking off.

nilspianoBack to the 1930s. General Yen had put him back in the public eye, especially in the eyes of young women who were the principal movie-goers. But Nils was still on thin ice, not that you would know from his interview style. “I don’t speak English”. “I have six women – a whole harem – in my home”. Studio embargo on interviews? He’d invite journalists personally. What about the fine MGM movies of his past? They were all dreck. Wondering why his house was so far away from all the other stars’? He was planning to live in the woods and bathe in the streams like Tarzan. Try and find him then, suckers.

He could never resist throwing stones at the wasp’s nest.

But the journalists who met him were charmed. He was a wry and suave host, and his ‘difficult’ nature was a breath of fresh air in the bell jar of Hollywood. Something delightful must have been going on in the young divorcee’s private life, they speculated, but they were dealing with an actor. By 1933, Nils’ obsession with adoption had mutated into something sadder. He convinced himself that somewhere his ‘real’ family were going on with their lives, glad to be shot of him. At night, he suffered panic attacks. Something was wrong with him, he told himself.  Perhaps his real parents were crazy. Perhaps they knew he’d go the same way. In a weird coincidence, half-brother Gunnar Asther was in LA competing as a sailor in the 1932 Summer Olympics. All those long summer days on Evil Anton’s boats paid off, and he took a bronze medal for Sweden. Whether Gunnar looked up Nils while he was there, I don’t know. Considering Anton deliberately excluded Nils from those father-son boating trips, the whole thing would have been a painful spectacle.

Gunnar is on the left. Thanks to litvixen for finding this.

Gunnar is on the left. Thanks to Litvixen for finding this.

Hilda, too, had come over from Sweden to inspect her son’s bride. She knew a miserable marriage when she saw one. At the divorce hearing, Vivian complained that her mother-in-law called her rude names in Swedish, but Hilda, like her son, could be cool and imperious to strangers. She was the same way with him; further proof, in his mind, that she wasn’t his biological mother despite their shared, distinctive beauty.

Bad marriages screw people up. They screw children up, especially. When little Evelyn was put on the stage in frilly skirts and tube socks, Nils was upset. Evelyn was being manoeuvred by movie professionals while too young to understand what she was giving up, like her vaudeville dolly mother before her. Like him.

Hollywood was a nightmare merry-go-round, and there was no getting off.

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In typical style, Nils shacked up with a 22-year-old Korean dental student straight after the divorce. The lad was promptly arrested for trying to forge Nils’ signature. Nils had a habit of throwing money at his lovers, and it’s entirely possible he gave the student a blank chequebook to play with. Louis Mayer exploded. Nils was one of those ‘dual-sex boys and lesbos’ (his words) who needed driving out of Hollywood.

Well, fine. He never wanted to be in Hollywood anyway. He returned to Europe where he could run away to Paris or Vienna at a moment’s notice, just the way he liked. In England he had fun as Jean Varenne in The Prisoner of Corbal, a daft French Revolution romance and probably my favourite of his films. Varenne is sardonic and sexy, parading about with a whip and a sneer, and the cross-dressing love triangle at the heart of the story gives the film a sexual ambiguity Nils is clearly revelling in. He became very thin for the role, and with his height he resembles a monochrome David Bowie. It’s the kind of fun he was never permitted in America.

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The Prisoner of Corbal opened the door to more fun roles as WWII came and went. In The Man on Half Moon Street, he plays a noir Dorian Grey plucking failed suicides from the London fog before harvesting their “glaaaaands” for the elixir of eternal life. A Right to Romance, although another candy floss romantic role, called for him to be scruffy. Women wrote to threaten that if he didn’t smarten up, they’d boycott his next work. He was breaking out of his mould. He could ditch the moustache. It was a joy.

But in Hollywood, someone had not forgotten the star who defied him.

This stinker.

This stinker.

Brewing in the background like a staph infection was Eddie Mannix, who you might remember from such atrocities as the car crash that killed his wife, the bullet in George Reeves head, and the annihilation of dancer Patricia Douglas after her rape by studio executive David Ross.

A pox on him and his weak chin.

Rumours had been popping up in movie magazines for more than a decade, all sanctioned by Mannix, and they’d slowly grown more outlandish. Where first a gossip columnist would delicately question why Nils Asther wasn’t satisfied by his pretty wife, now papers baldly stated he’d been spotted sunbathing naked on a roof with a man. Nils looked at the gossip with the contempt it deserved. “I was not going to let them crush me,” he wrote. When he returned to Hollywood in the mid-nineteen-forties, he fell straight back into his habit of cruising the boulevards. There were sailors drifting around like litter, and soon he was seeing one regularly. Marlon Brando’s early body double, no less. Well done, Nils. It was a middle finger to the studios and their drive to rid the industry of homosexuals. Worse, it was an insult to Mannix.

Despite the enduring affection of audiences, work was not forthcoming. Someone started a rumour he’d killed himself. Another said he dyed his hair and walked with an old man’s stoop. The punishing behaviour of the studios took a dark turn – now he was offered mainly Nazi roles. They knew full well it pained him that his birthplace Denmark had been invaded.

Nils c.1945, not exactly decrepit.

Nils c.1945, not exactly decrepit.

Nils liked the freedom to vanish, so he kept a little apartment in Philadelphia away from the movie world. There he could do odd jobs to pay the rent – truck driving, delivering post. It was bizarre to onlookers, but he loved those $1 an hour jobs. They were nowhere near as miserable as having to play Nazis. It was there that he was contacted to write and direct a commercial. It was work. Why not?

A private villa. A sunny day. He was met at the door by a young man in swim shorts, soaking wet and smiling.

He was led out to the garden, given a glass of juice and told his contact would be out in a moment. Would he like to swim? There were spare shorts he could borrow. Nils declined. It was an unseasonably beautiful day. Waiting in the sunshine was no hardship.

He waited. The boy swam. No one came.

Something felt wrong. The juice reeked of booze. He put the glass down just as the boy got out of the pool and settled down beside him. Then time seemed to speed up.

The boy grabbed Nils’ hand and pressed it to his crotch. Men appeared from nowhere. They saw him try to molest the boy. They would tell the press and the police. All he had to do was write them a blank cheque the way he had for his Korean dental student and then they would let him take the boy upstairs. Swimsuit boy protested. No one had told him that was the plan. But these were gangsters*. The plan was whatever benefited them.

Nils said no. Of course he said no. So they beat him almost unconscious.

Bleeding and retching, he had to hitchhike home. When he finally arrived at his flat, he realised he couldn’t live there anymore. The gangsters would find him.

It took twenty-four hours to gather the strength to leave the flat, and when a neighbour saw the state of him him he insisted Nils see a doctor. The next humiliation was that he couldn’t pay. What with the stock market crash, he hadn’t much money to begin with, and a call to the bank confirmed the thieves had taken everything without delay. All those little dollars earned driving a truck. A doctor friend of the neighbour confirmed his liver was hugely swollen and he needed urgent, expensive care. Nils took himself home and prepared an overdose of sleeping tablets.

7797121992_6a9178385a_bRemember Anna Q Nilsson?  He still wore the ring she gave him all those years ago. The two Swedes had barely seen each other during the war, and ‘Beloved Anna Q’ was much changed. A horse riding accident rendered one leg a full six centimetres shorter than the other, and she needed a brace to walk. Unlike Nils, Anna had made shrewd investments and survived the stock market crash pretty comfortably. She had tried to persuade Nils to follow suit, but he was never the type to take good advice – one of the reasons she wouldn’t marry him. At their last meeting, just before he left for Philadelphia, Anna told Nils to fight back. Get in a Rolls Royce and do a tour of the biggest names. Tell them you’re staying your fond farewells before quitting the business. She guaranteed the directors would be snivelling at his door by morning. Nils only laughed. How about I get in a Rolls Royce and drive around telling everyone to shove it? he said.

He didn’t call Anna when he laid out his sleeping pills. Instead he phoned a University tutor he knew casually: Margareta Olsen-Krensiski. He was sure she wouldn’t swoop in with optimism the way Anna would, and gave her some basic funeral instructions. Toss his ashes anywhere, he said. He didn’t care. And maybe pray for him. There was another way, Margareta said. Come with her back to Sweden. There was a shortage of older male actors there, and she knew a friendly Jewish family who would be happy to help him settle in. There was social security in Sweden, attitudes were more permissive. Did he not know actors received a pension there? The problem wasn’t him, it was America.

We have Margareta to thank for talking him down. Nils had always loved escaping, and suicide was an extension of that coping mechanism. So no, he didn’t overdose that night. He gave away almost everything he owned, put the essentials in a single suitcase, and turned his back on the nightmare merry-go-round.

But it’s not the end. Not yet.

nils asther and dog* I’m not saying Eddie Mannix definitely ordered the crime. I’m certain there were plenty of gangs out to extort money from gay actors, and with all the open secrets that kept Hollywood running, it couldn’t have been hard to pick a mark. But at the very least, Mannix laid the groundwork for violence in full knowledge of what might happen. If he was directly responsible, I wouldn’t be surprised in the least. The toad.