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…

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.

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.

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.

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:

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.

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.

My 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.
I 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.

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.

Hello again. Remember me?

I haven’t blogged properly for a while, partly because I’m wrapped up in The Mighty Healer, and partly because the boyfriend and I have both been varying shades of ill, ill, ill, for several months. Nothing sucks up time like hospital visits and bedrest.

Here in the UK, the general election is about to topple onto our heads. That means blanket coverage of men in bad suits shouting at each other about the NHS, not because they care that it’s circling the drain, but because winning debates is more fun than losing them. After a while, all the chatter ceases to sound like real life and enters Pink Floyd video territory, particularly when Cameron gets a bit sweaty and you sit there hoping his rubber mask will slither off to reveal the circuitry within.

So I want to share something fun.

Karolyn Gehrig is a queer disabled artist from Los Angeles. Like me, she has a connective tissue disorder and spends a lot of time traipsing in and out of hospital. To pick herself up, Karolyn started taking selfies in a medical setting, tagging them #HospitalGlam.

They’re gorgeous.

“I started posting #hospitalglam because it was frustrating to me that every time I got sicker I’d disappear from my commitments and then feel shy about explaining where I’d been when I knew there was absolutely nothing wrong with pursuing treatment for my disabling chronic illnesses.”

The idea struck a chord. With the success of the #HospitalGlam hashtag on Twitter, Karolyn set up a Tumblr for fellow patients to submit their own selfies, giving them something to do in those doldrum waiting rooms, and winning back a bit of self-esteem at the same time. Any gender, any illness, artistic or silly, made-up or fed up.

One nice effect of #HospitalGlam is finding like-minded souls.

Here’s Heather of Mortuary Report. She’s a funeral director and all-round fascinating human. You should read her blog on reclaiming sexiness and personal empowerment whilst chronically ill, but here’s a chunk that stuck out for me:

“There are few places where one feels less empowered and beautiful than in a medical setting, and it’s not just because of that awful beige color the walls in doctor’s offices are always painted. Most humans are fortunate to only associate doctors with tedious time spent in waiting rooms and an annual check up. For those of us who are chronically ill, however, the experience of spending as much time as we do in medical settings becomes a spin-cycle of misery, depression, and – often – questioning our own sanity. […] Being disabled in an able-bodied society quickly became a source of shame and frustration.”

Being chronically ill isn’t as glamorous as the brochure made it out to be. The invisibility Karolyn talked about – self-inflicted or otherwise – has an accumulative effect on the psyche. That’s on top of the media’s relentless commodification of the body, where presentability is bound up in youth, health, and unattainable conventional beauty. That’s why it’s so important to see images of people with chronic illnesses and disabilities where a) they’re in control, and b) pity porn, or the godawful ‘inspiration’, doesn’t come into it.

Model Melanie Gaydos will be familiar from Rammstein and Die Antwoord videos. Here, she talks about growing up with Ectodermal Dysplasia and bringing her individuality to the modelling world.

“When I go on a photo shoot, if there’s other industry models there, they normally don’t really know what to make of me. And they’re usually like, ‘What the fuck is this?’ […] I love modelling. A time for me to be completely open. I guess it’s kind of like a therapeutic process for me.”

#HospitalGlam is a weapon for those of us with chronic illnesses. With it, we reassert our individuality, regain our playfulness, and have a ‘frivolous’ place to escape to when all else might seem out of control. It is therapeutic. And it’s fun. And all the while people ask what the fuck, we know it’s needed.

Our Lady of the Cathode Rays. Thine be the free hospital mochas.

See you on the hashtag.

Today is Rare Disease Day, an international day of awareness-raising activities under the slogan “Join Together for Better Care”. Yesterday, the House of Commons held a debate on the effects of welfare cuts on the sick and disabled. As you can see, it was teeming with people who care.

While the debate dribbled on, I read a discussion on one of the Marfan Syndrome social forums. A man was expecting the birth of his son, and wanted to know how he could bring the boy up to see Marfans in a positive – or at least neutral – light. A Marf parent has a 50% chance of passing the mutated gene onto their child. If his son isn’t born with the syndrome, he will still experience the fallout of strangers’ reactions to his father. Which, let me tell you from experience, will not be the stuff gleaming Liberal utopian dreams are made on.

This had me thinking. If I could go back in time to offer my child-self advice on living with disability, what would I say?

Anyone with a rare disease or disorder will be well-acquainted with the word ‘awkward’. It usually arrives wearing a friendly mask: mild teasing when you explain you can’t help your colleague move their heavy desk, or the tutting of your fellow Girl Guides when you faint on the way to the world’s oldest toy shop and have to lie panting on the Oxford Circus floor tiles, watching commuters’ feet hurrying by.

“Hamleys is going to close soon,” someone whined in my ear. “Just stand up.”

Disability is just as much a social challenge as it is physical. You learn you are not simply inconveniencing people – you are the inconvenience.

I grew up before the Internet was permanently glued to the palms of our hands. When I eventually got a modem and an hour each weekend to play on it, it didn’t occur to me to look for advocacy groups, support services, or other people like me. My fear was that I would type ‘Marfans’ into the search field and find nothing but derision and cluelessness, as I had in real life. “If it was really that bad,” my PE teacher said when I tried to explain that trampoline + weak connective tissue = disaster, “I would have heard of it”. Then she made me get on the damn trampoline.

13-year-old Verity internalised the message that disability equals inferiority.

It took me years to gather the courage to seek out other Marfs online. When I did, I realised how valuable support groups are for those of us with rare disorders, and not merely in a fluffy, join-hands-and-sway-to-the-folk-guitar way.

“If you ever get a fuzzy black curtain descending over one side of your vision, drop what you’re doing and run to A&E – your retinas are detaching “ Good to know, yes? Or: “Get a medical alert bracelet. If you’re on the floor with a collapsed lung, you won’t be able to talk.”

Nobody had told me. I was so used to explaining the little I knew about my condition to my own doctors, to being the star attraction for medical students, to fielding gigantic questions from people in power such as the DWP employee who asked, “So, can you just, like, explain to me what this thing is?“. I had been trained to believe that even if quietly soldiering on put me in danger, at least it meant I wasn’t getting in anyone’s way.

The social model of disability says that disability is caused by the way society is organised, rather than by a person’s impairment or difference. When barriers are removed, disabled people can be independent and equal in society, with choice and control over their own lives. – Scope.

Napoleon is a hardworking taxpayer and has no time for your nonsense.

Able-bodied or otherwise, we are brought up knowing the archetypes: The Inspiring Cripple, The Grateful Invalid. Strivers and Skivers. The poisonous leftovers of the Victorian Deserving/Undeserving dichotomy. I have said before that to discuss these issues one has to cloak oneself in charm and detachment, because if there’s anything those in favour of welfare cuts can’t stand, it’s the bolshie sick. Perhaps it reminds them of the uncomfortable old adage that a society is only as civilised as its treatment of the vulnerable.

In the UK, it’s a lousy time to be disabled. Vital services are being cut back, benefits are taken away, and women in comas are told they are fit for work. Quota systems deliberately work against us, disturbing documents are leaked, fees stand in the way of employment tribunals, and only a handful of MPs grudgingly turn up to welfare debates. You feel ashamed to seek help; you come to expect disdain. The social model of disability thrives on the active disempowerment of those already at a disadvantage. Watch it at work.

So, on Rare Disease Day, when I like to take stock of my network of support, and the possibilities of the future, I find myself looking at my country and not feeling terribly wanted. Nevertheless, I still have sufficient self-esteem to know that if I could go back and tell my child-self anything, it would be that disability does not equal inferiority. It doesn’t, despite the strenuous efforts of those more fortunate than you: people who may be elected officials, or wearing ATOS lanyards, or just little girls impatient to get to the toy shop before it closes.

Does this tall, skinny person have long fingers and toes?

Do they need glasses? Have stretchmarks? Feel the cold? Tend to faint?

Can they do this?

Or, worse yet, this?

If so, there’s a chance they could have Marfan Syndrome. Show them this website. It only takes a moment, it won’t offend them, and it could save their life.

#MarfanAwarenessMonth