this whereabouts

I am drowning in implications and connections. I had my first specialist appointment in months.

He didn’t suggest prednisone, so thank gods for that.

But I am back on potent-as-hell medication. New stuff (for me, not for the pharmaceutical world) so perhaps it will work better. And a scope on the cards next week, after which I will almost certainly be going on Humira, as long as I fulfil all of the necessary criteria. Humira, by the by, is the brand name for adalimumab, a TNF (tumour necrosis factor – mmm, tasty)  inhibiting drug that is used in the treatment of rheumatoid arthritis, psoriatic arthritis, ankylosing spondylitis, Crohn’s disease, ulcerative colitis, chronic psoriasis and juvenile idiopathic arthritis.

Thanks Wikipedia.

TNF inhibiters are more commonly known in IBD circles as ‘biologics’, for some reason. Also, I’ve already been on two of them (infliximab and etrolizumab) before. So, you can maybe understand that I’m not exactly jumping for joy at the idea of this magical solution. And for extra added fun, Humira is self-injected, and by most accounts, is rather painful.

I nearly cried when I was in the supermarket walking through the fruit section, because I really, really wanted to grab some delicious healthy stuff and eat it. But I can’t. I just can’t. I am yet to find a fruit that does not make everything much worse. Fructose is the devil. Acid is the devil. Food in goddamn general is the devil. I forced myself to buy ‘acceptable’ foods in terms of ‘things that my gut can handle’ – and I left with plain white pita bread, chicken, and chocolate biscuits.

My exciting diet, ladies and gentlemen.

The other super great thing (not actually super great) was being reminded, more explicitly this time, about how my intestinal and surgical situation has means that I need to think about ‘family plans’ sooner rather than later. ‘You don’t want to leave until you’re in your thirties,’ sayeth the doc. I don’t want to get all Rachel-on-Friends (per this video), but what kind of a timeframe does that really leave a misery guts of a mid-20s gal?

Combine this with the fact that I no longer have a de facto niece and nephew around to fill my baby-interacting needs, and it’s all rather a lot to deal with.

Fun.

world IBD day

It is May 19th – at least in New Zealand, it is.

On this day, the following things have happened throughout history

Anne Boleyn was beheaded (1536)
Nellie Melba, the soprano and namesake of a delicious dessert, was born (1861)
Oscar Wilde was released from prison (1897)
Pol Pot, leader of the Khmer Rouge and totalitarian dictator of Cambodia, was born (1925)
André René Roussimoff, AKA André the Giant, was born (1946)
Marilyn Monroe sang ‘Happy Birthday’ to JFK (1962)
Tu’i Malila , the world’s oldest known tortoise died at 188 years old (1965)
Jodi Picoult, Queen of Depressive Chick Lit, was born (1966)

Nowadays, it is apparently Malcolm X Day in the US, St Calocerus Day in the Eastern Orthodox Church, and Greek Genocide Remembrance Day.

So a lot goes on on this day. But there’s another importance to this particular date that is of significance to me, and to many other people, even if they don’t necessarily talk about it as loudly as I do.

It’s World IBD Day, one particular day given to talking about Inflammatory Bowel Disease. Some of you will have read my pieces on IBD in the past, some of you may not have. So we’ll go with a basic level of explanation.

The first thing to remember is that IBD is completely separate from IBS. IBS, or irritable bowel syndrome, is fairly common, and whilst unpleasant, it is rarely a serious disease. Don’t get me wrong, I wouldn’t wish uncooperative insides on anyone, but the reality is, it pales in comparison to IBD, so it seems reasonable that many of us with IBD get a little frustrated when people confuse the two. IBD is, by most accounts, autoimmune, putting it in the same family as lupus and rheumatoid arthritis. We just happen to have immune systems that really, really hate our guts (ha!).

It is understandable that some people are quiet about their Crohn’s, or their ulcerative colitis (the two major forms of IBD). We have been conditioned to not talk about things to do with digestion – tell us about your migraine, sure, or your asthma, but we don’t want to hear about the fact that you have spent your day doubled over in the bathroom. So people keep silent. They avoid bringing up the subject of their pain and suffering, even with their doctors. I am one such culprit. I started presenting symptoms about a year and a half before they got to the point that I knew I really couldn’t go on with the way it was. I was a twenty year old girl, I wasn’t prepared to talk about ‘gross’ things with anyone. If I had spoken up sooner, it’s possible that things could have gotten under control more thoroughly, without having to go down the rocky path that I ended up having to take – that I am still very much on.

Here is a sample idea of what twenty-four hours in the life of a really bloody stubborn gal with majorly flaring IBD is like. I’ll start from going to bed, because that’s probably the best way to illustrate it.

10pm – Last minute bathroom visit before bed. Worst of the day is hopefully over, some pain, probably still some blood, maybe twenty minutes spent dealing with it. Take evening medications (4x Asacol, 1x prednisone, 1.5x azathioprine, 2x paracetamol because the doctors haven’t prescribed you anything stronger yet, 1x citalopram because the prednisone has caused fully fledged depression to finally take hold). Go to bed.
11pm – Still can’t get to sleep, too wracked with pain, clutching stomach, possibly sobbing quietly into pillow.
2:30am – Woken up by insides. Pain. Go to bathroom. Pain. Back to bed.
5am – Woken up by insides. Pain. Go to bathroom. Pain. Back to bed.
6:25am – Woken up before alarm by insides. Go to bathroom. Start getting ready for the day – this involves making sure that an ’emergency’ kit of sorts is in the bag.
6:55am – Second ‘official’ bathroom visit of the morning.
7:10am – Leave house, get to the porch before doubling back to go to the bathroom again. Keep in mind that on all of these bathroom instances, there is pain, and blood of varying amounts.

Does that give you an idea of how things are? I can’t go into the intricacies of the whole day, really – but I would always have at least one possible stop off on the way to work, I would always allow a lot of extra time to get there, just in case I had a really bad attack. I would generally go to the bathroom two to three times an hour in the first half of the day, lessening as the day went along. That was the reality.

And it’s the reality for a lot of other people too. We all have different precise symptoms, but pain is universal.

I was only diagnosed at the end of 2010, but even though it’s only been three and half years, I still couldn’t possibly tell you how many times I’ve had needles put in me. I’d hazard a guess at fifty blood tests, maybe fifteen IVs (and that’s not including all the times that I’ve been stuck more than once because my veins are so worn out). I have had IV infusions that almost much amount to chemotherapy (hardcore drugs given intravenously), I’ve been on drug trials (multiple injections in my stomach, every week, about seven vials of blood taken every week), I’ve been on steroids, I’ve been on the sort of drugs they give to organ transplant patients.

As canny readers will realise, none of this has properly worked. I had fifteen centimetres of my colon taken out last year (I have the laparoscopic scars to prove it – I’ll show you if you ask – my belly button looked super brutal for the first few weeks after the op). I have an ostomy, for now (cf. my happy clappy articles for various publications on the topic). These meds and surgery probably saved my life. People can – and do – die from complications of IBD. The internet IBD community has recently been mourning the death of twenty year old Alexandria Davidson, a Crohn’s advocate who spent the last months of her life in hospice care. I had only vaguely heard of her and her organisation before I heard about her passing, but it still upset me. IBD is not something to be trifled with – and to suggest that it’s a stomach ache that’ll go away if we eat raw vegan/paleo/gluten-free/insert fad here is deeply insulting both to those of us suffering from it, but also to those who have died as a consequence, and to their families.

I am still not well. I take painkillers most days, I take anti-nausea meds more often than I’d like. I get joint pain – my knees are below par, and sometimes my elbows,  fingers, and toes play up too. Now that I’m ‘healthier’ than I was, I would like to be able to get more active, but instead my body seems to be letting me down when I push myself. I still get intestinal pain – and after my specialists agreed, post-surgery, that it was most likely Crohn’s, not ulcerative colitis as previously though, I am living in constant fear of inflammation and pain spreading to other parts of my gastric tract, instead of limited themselves to my large intestine like well behaved UC symptoms should. I am going to need to have at least one more operation at some point in the future – and even that is scary. You never know exactly what will happen, what will have been done when you eventually wake up. You have to deal with a whole new kind of pain during recovery.

There is a lot to handle. Especially when you’re in a new city, still waiting to be seen by their gastroenterology unit, when you don’t have people around who understand what you’ve been through, when you no longer have someone to sit with you when you choke down colonoscopy prep, to rub your back when you’re in bed crying from the pain.

So, today, spare a thought for me, for your cousin who has Crohn’s, for your coworker who has taken time of for mysterious stomach pains. Think about the reality of what we live with, a life of pokes, prods and pain, a life of boxes of medical supplies at your door just to be able to function in society. It’s a mixed feeling when you get excited about the arrival of a new style of bag. If nothing else, just remember – it’s a hell of a lot more than a tummy ache.

fears

Tumblr has become my confession box; this place remains slightly more honed. But my most recent ‘yes, this deserves a frenzied Tumblr post’ moment seems to have grown and spread, an idea or a virus. The end result is what will tell the difference, I suppose, but ultimately it is this – what are the fears that are creeping on my mind, and will  writing them out, sending them into the internet (so the world and the ether all at once, audience depending) change anything? Will admitting them in this space lighten the load, or simply provide more ammunition for people to doubt me, and for me to doubt myself?

Only one way to find out.

Here some things that I fear. In moderate detail.

I fear that my best writing days are behind me, that I haven’t improved my craft since I was sixteen. I have not had creative work published since I was in my first year of university, and that was only because I’d been lucky enough to have work submitted by my glorious former English/Creative Writing teacher at high school. I had chances to make the most of noteworthy names in my undergraduate courses – but I was too anxious, too depressed, too insert-synonym-for-terrified to let my classmates see my work, let alone the tutors and lecturers that we had. I passed my stage three prose course with a fairly good grade – but I’m sure it could have been an absolutely glorious grade if I had gone to more than the first lecture and workshop and then had borderline panic attacks every time I thought about going to a class taught by Witi Ihimaera.

On that note, I also fear that if I did find myself accepted into a masters programme (as I have wanted to do since the aforementioned English teacher basically introduced me to the concept of the IIML etc), I would descend into the same I’m-not-good-enough spiral, that I would take all judgements too harshly, that I just couldn’t hack it. Honestly, that sort of fear is probably part of why I decided that I should investigate publishing and editing as a career choice. So that I could think critically about my work from the perspective of the people with the power. So that I could learn what people are looking for when they work their ways through submissions. The contacts and connections that I have made since I moved to Wellington are probably helping that somewhat – I don’t feel like the total outsider to the literary world that I once did, but I still live on the fringe.

I fear that I have shot myself in the foot with pursuing ‘journalistic’ writing in various forms, especially over the past few months. It’s not that I don’t enjoy writing these things, but I feel as if it jeopardises some people’s opinions of me and my work. Yes, I have written reviews, and feature type pieces, and musician interviews – but that doesn’t define me or what my goals and intentions are. My first and foremost love is still prose (and sort of poetry too, even if I won’t admit that up front terribly often). Articles are a way of getting paid to write things. And that’s still rather amazing to me.

Not everything has to do with writing, don’t worry.

I fear loneliness. Oftentimes, since I’ve moved here, it feels as though my connection to friendship is through the internet, and real life is just a place where I work and go to class. I don’t choose for it to be that way, but I’m still so stuck in my ways of the same group of friends through undergrad, and attaching myself to D’s friendship groups – and generally just using the (reasonable) excuse of being too sick (both in body and mind, thanks hindsight) to put effort into things like socialising. I’ve lost my touch, if ever I had it – and the problem is, the people whose company I tend to like most are probably those who least feel the need for another person in their life.

Related to that, I fear my own desirability – both romantically and platonically. I look at myself critically, and struggle to figure out what would draw anyone to me. This is before I even take into account the whole busted gut situation. Sometimes I worry that I’ve thrown myself too far into this book world – it is, after all, all that I’ve ever really known. Music, and words. I know that in theory there is more to me than that, but so often I struggle to come up with anything else. It’s reading, writing, publishing – or listening, playing, singing. Every gerund rooted in decisions that I made many years ago.

I have never felt ‘attractive’. I have always been the pursuer in any potential relationships (not that my backlist is terribly heavy there), I don’t have people paying attention to me in any way. When the fact that I ‘like’ someone comes up (rarely do I let that happen, but happen it has), I’m always faced with a ‘wait, really? I had no idea’. I just don’t know how to show it. I fear that this is something I just have to accept, that people don’t consider me a possibility until I put myself out there, ready to be shot down. It’s what I have come to expect. I didn’t walk away from the three years with Dom and keep my ability to trust people intact.

I fear my body, what it does and what it may not be able to do. This is where things maybe get a bit heavy. You’ve been warned. I have a chronic illness – we know that. It’s not fun, but for the most part, it’s manageable. Ish. But let’s now add to that the fact that at my age my mother had melanoma. One of my medications also makes me more susceptible to melanoma. More recently, she has had seizures and been hospitalised for them.  My father, not yet 60,  has had arthritis for years, has another autoimmune condition (not Crohn’s, like I do) and has also had heart issues. So I come from… imperfect stock healthwise, shall we say. All of this contributes to a fear of my health’s twists and turns. I already get IBD-related arthritic pain, at times. Bad knees are not the domain of one in their mid-twenties.

And related to all of that, I fear for my future. I was an IVF baby. I took eight years to come about. And whilst my two younger siblings then came about naturally, there was obviously something not cooperating that needed to be nudged for things to start happening. Because of the strange tag thing on my ear, Mum used to say that they mixed me up badly in the lab – now it feels a little more self-destructive to say that, since my health has deteriorated. So I fear having a genetic tendency towards problems in the future – not to mention the fact that since I have already had abdominal surgery and am guaranteed at least one more… it all adds up to make things like pregnancy that little bit more difficult. And it’s all the worse to worry about these things when you don’t really have a means to make them happen, anyway. It was one thing for me to wonder about it 6+ months ago when I was in an established relationship – not as something to have happen any time super soon, but something to be aware of.

Now that there’s nobody alongside me, it feels pointless to even wonder about these things, but still they play on my mind.

There are other things, of course – noises in the night, disasters, the usual. I am lucky, I suppose (ha), that I don’t have any crippling phobias of any kind, I can dislike spiders but not leap away from them – I’d flinch if a mouse scurried by but I wouldn’t scream.

But these things, even if they are me wrapping myself in knots, are weighing me down.

distance

Some side effects are not known until they are experienced; nobody keeps a record, because the list would be too long. The side effects of distance present themselves to the individual as time goes by, and all cases are different.

I sat in Civic Square, after everything was established as being ‘okay’. For the time being. I walked behind a tourist family who chattered away, wondering at their whereabouts. The mother noticed the gulls padding around, screeching at one another, and commented that they must be back near the sea.

They were, of course, and yet all I could think about was seeing a lone seagull in Montreal, several months into my time there. Montreal is on an island, but it’s a long way from the sea. It was a moment not unlike the first rainfall that I experienced while there (rain! this is so exciting! it’s warm enough to RAIN!), but a little more emotionally fraught.

Homesickness is a bitch.

But this isn’t about homesickness, not exactly. It’s about difficulty, it’s about frustration, it’s about being in the wrong place – or someone else being in the wrong place, at least. It’s about distance.

I have already written here about how my dad is in Honiara, in the Solomon Islands. Fortunately, it has been a milder couple of weeks for them since the floods and storms and earthquakes of earlier this month. But the worry still exists – the thought that something even more dire could yet happen, while I sit in my windswept but mostly safe house on a hill in this strange little corner of the world I call home.

Then, closer to ‘home,’ yet still far away, Auckland looms to the north. Last night, I forgot to turn off my alarm, and so I woke up earlier than I meant to. In scrabbling to turn the sound off, I saw missed calls, texts. And so, I found out, seven-ish hours after the fact, that my mum had had a midnight ambulance ride to the hospital, and was still there.

Things like that will really reinforce the distance.

She was discharged late this morning, and I had just gotten off the phone to her when I sat down in Civic Square. I accidentally dropped a bit of my sandwich, and was inundated by gulls and pigeons. After the initial furore had died down, I watched them wait in hope, a couple of them clearly in positions of authority as they puffed themselves up and marched towards others, undeserving of this chance at scraps. I went to the library, I went to work, my head trying desperately to keep everything level. We drank gin and tonics at the end of the day, and I caught the bus home, everything still churning, and all sorts of write this down! ideas came and went, but this one was the most obvious one to stick with.

And so here it is. Distance.

the teenage dream?

Eventually, in this article/mess, I will talk about Zac & Mia by A.J. Betts. But you have been warned, it seems that it took me a LONG time to get there. Ah well. Enjoy my brand of literary ranting and raving.

In early 2010, I went to Wellington for an Amanda Palmer concert. As was tradition.* Part of my excuse for trekking down country for a musician I had seen more than a couple of times was a) I had a free ticket and b) Neil Gaiman was also in town, hurrah! I had finally actually read some Gaiman by this point, having shamefully not actually touched any of his work when I met him eight-ish months earlier.**

So I dutifully purchased a ticket to the ‘An Evening With…’ type event that was going on at the Town Hall the day after the Amanda show (if memory serves), but I still had time to burn before the gig, and discovered that Neil was doing a session with Australian author Margo Lanagan on YA fiction, chaired by Kate de Goldi. What’s not to like? I bought a ticket, and headed to The Embassy***. And it was thoroughly illuminating.****

There was a sense of agreement among the authors that kids are really good at self-censoring – that’s to say, even when reading things above their intended age, oftentimes the things that are ‘inappropriate’ will just go over their heads. I thoroughly agree with this – I can’t come up with an book-related examples off-hand, but when I look back at all the dirty jokes and suggestive lyrics in films and songs that I watched and listened to without a care in the world as a kid, it does make me think that there’s something to it.

Related to this, both authors seemed to say that despite writing for a range of ages, they don’t go into a story thinking ‘this is something that I’m writing for teenagers’  – rather it is something that is the product of publisher and editorial decisions made on something that has grown of its own accord, without working to fill some sort of age-genre niche. It makes me wonder how things would work if other authors worked in a similar system, how it would (or wouldn’t) affect the way that trends work.

Because that’s what this is basically meant to be about, before that introductory tangent happened. Young adult genre trends, and how strange they are. Really. It really does open your eyes as to just how swayed by current interests the teenage/young person mindset is when you see just how overwhelmingly trend-driven YA fiction is. There are obviously ebbs and flows in terms of what is most popular in the world of regular adult fiction, with occasional strange outliers like Fifty Shades of Grey, but as a whole, people can have specific interests in any genre, and there’s going to be new stuff being churned out on a regular basis, be it thriller, sci-fi, ‘literary fiction’ (borrowing Ellie Catton’s quote marks there), or what-have-you.

But teenagers! My goodness. At this moment, it’s perhaps not so mad as it has been at some points in recent years – it seems to be a bit of a transitional period at present – but having worked in a kids’ department in the height of Meyer-mania, the proliferation of vampire (and later Insert-Paranormal-Creature-of-the-Month – did anyone else read Switched by Amanda Hocking? Or as my former workmate Rosie and I referred to it “that troll book”?) fiction was INSANE. I mean, everyone knows that. If it’s not Twilight, it’s Vampire Academy or Vampire Diaries, or Blue Bloods, or The Mortal Instruments. Money spinners, every one – and I won’t claim to judge them for quality, because I haven’t read most of them. I did read all four Twilight books (and the companion novella The Short Second Life of Bree Tanner) and the first book of The Mortal Instruments, but, in case you’re interested, here are my excuses/reasons.
1. Twilight – I found an abandoned copy at O’Hare Airport on my way to Montreal. Made for good plane reading.
2. New Moon – I forgot to bring a book with my on the plane to Florida, and it was the cheapest English language book in the Montreal airport bookstore.3. Eclipse – I had confessed that I’d read them to a friend, and when she came to visit me she brought a copy of Eclipse with her that she’d found while cleaning out a flat or some such.
4. Breaking Dawn – By this stage, I have to admit, I did actively borrow it from a friend (thanks, Mel!), just so that I could say I’d seen it through to the end.
5. The Short Second Life Of Bree Tanner – Off-site sale store, just myself and much less-than-riveting stock for company. So over the course of a few shifts I stealthily worked by way through the book (as well as a re-read of The Bad Beginning. Miss you, Botany Town Centre (not).
6. City of Bones. I don’t know if Cassandra Clare is quite in the same ‘really?!’ league as Stephenie Meyer, but still. I read this because it was on my Kobo when I was in hospital after my op last year, and it managed to make more sense than Atwood or Asimov in my morphine haze.

I’m just all about the tangents today, aren’t I? It has been a long day.

Anyway. We were talking about trends! So, as most people will be aware, the next major Young Adult Fiction Trend after paranormal romance was/is Dystopia. Which is very much more up my alley. You all of know my Atwood obsession – and more specifically my Atwood speculative fiction obsession. A good dystopia is just brilliant, and I can’t quite put my finger on why. The cautionary tale element, perhaps, or maybe I just have no faith in the future of the human race? Depends on the day. Regardless, The Handmaid’s Tale and the Maddaddam trilogy are some of my favourite books of all time. And suddenly, there were going to be new dystopic books written in such a way as to be consumed swiftly and easily. Frabjous day!

The Hunger Games was excellent, to a point. I’m not unique in my opinion that the second two books suffered because of the assumed timing/publisher pressure following the huge popularity of the first. Divergent had a similar fate, as did the Uglies books (though neither were quite on the same level as The Hunger Games) – great first book to hook you, but everything rather gets a little too big too fast, and the writing quality drops as a consequence. I tend to think that the ideas are better than the execution in some of these YA dystopias, which isn’t the end of the world, I suppose – I’m sure it fuels the imagination of fledgling writers finding their feet through fanfic.

But even the day of Dystopic Dominance seems to be drawing to an end, and John Green is perhaps the main man behind this transition. Real life is cool again – and in particular, the brand of ‘sick lit’ as it is sometimes uncomfortably known, that he seems to have kicked off with The Fault in Our Stars (correct me if I’m wrong – and obviously I know that books in this vein have existed forever, but none have had quite the same following). I really loved the book, when I read it last year while in the throes of being desperately unwell. One of his other books was one of my other post-op reads (Paper Towns, I think?) along with the aforementioned Cassandra Clare title. Now, kids with cancer are having their stories shared more passionately than ever. I just finished reading Zac & Mia by A.J. Betts, and I thoroughly enjoyed it – but at the same time, it felt a little like I was reading the Aussie version of TFiOS, with less pretentious protagonists and a shuffle of specific cancer-locations. Love on the oncology ward, the new Love in Post-Apocalyptic Appalachia, or Love & Fangs in the Pacific Northwest.

It seems like such a strange niche to have such prominence. Is it the sparkly strands of hope beyond all odds? Is it the fact that many a child will have seen a classmate or relative suffer through the pain of cancer (or another serious illness, though these genre books don’t seem to have stepped out of that box yet)? I’m not a cancer patient, obviously, but my health background meant that there were a fair few moments while reading Zac & Mia that I felt uncomfortable with how familiar these things sounded – the bruises and scars on arms from needles, that constant whir/drip of IVs, the way in which such intensive drugs just sap your life force entirely. I’ve sat in haemotology, with my IV attached, surrounded by patients undergoing chemo. I’ve been put under, not knowing exactly what’s going to happen when I wake up, I’ve had a puffy steroid face, I’ve had slight fond reminisces of a catheter.

Basically, I can relate to some of the goings on of these characters more than I’d like to. I suppose it’s not helped by the fact that I’m currently in a bit of a flap about my health going forward, but I felt constantly on edge while reading hospital scenes in Zac & Mia, even as I felt compelled to read on, felt compassion, empathy. What does a healthy reader take from these stories? Do they zone in on the love stories, with the cancer simply part of the love story? Do they read on, knowing that one of the bright young things could relapse and deteriorate at any moment, so that they the reader can then cry along with the protagonist left alive? Is it glamourising illness, despite painting a pretty damn unhappy and unpleasant image of it?

I don’t know. I’m probably overthinking it.

Trends are strange things, guys.

Perhaps there will be a part two tomorrow when I’ve had more time to digest the book, and I’m less exhausted (funny, right? because when am I ever not exhausted?). All this being said, I would still recommend it.

*The tradition being that I had a compulsion to travel far and wide in pursuit of as many AFP concerts as possible. Last tally was fifteen, I think, including one Coachella slot, one Dresden Dolls show, one performance/reading with her and Neil at a bookstore and one performance of “Delilah” in her lounge. But I digress.

** This was the time that AFP and Neil were performing together at the Housingworks Bookstore, when I came in early with the gang, as it was in those NY-y days, and I was sitting pretty in a corner keeping out of the way when Neil walked past, then stopped and came towards me, saying “You must be the other barely legal lesbian (cf. @thebarelylegals, an on-going Twitter joke circa May 2009), from New Zealand! I’m Neil.” And he stuck his hand out to shake, and apologised for having forgotten my actual name. He had met Kayla, the other part of the boisterous Bed-Stuy  duo the day before, hence the ‘otherness’. It was possibly the most surreal moment of my life. Gods bless my bright pink hair.

***Where, in hindsight, I probably interacted with some of my now-colleagues at the Unity satellite store.

****Keep in mind that everything is being jotted down by memory, now, and this was four years ago, and those four years have been full of illness and drugs and surgery and depression and many other things which may have slightly tinkered with my memory.

held

i meant to find some comfort in the keyboard, finding myself awake later than i should
borderline hyperventilation, reliving moments best left to the past, ill-chosen reminders
for every word of reassurance, this too shall pass, you are so strong
once in a while the breakdown, the relinquishing of control to that baser part
known for its lingering, its fears, its dread – it descends and the wind outside will not dislodge it
the rise and fall, lost in the trough where bad dreams feed and breed
the but, the every but that comes to mind
so easily shot down, words are wind, since this is some strange fantasy after all
alms given in casual words
he told me i lacked empathy, smug and meditative
i told him empathy is why i’m still here

sometimes my illness makes me feel strong
sometimes i tell myself that it is what has led me to this place
that it is no bad thing to have your path drawn in strange ways
better sense tells me that it was not health that drove me this way
in goals and in dreams
but it is what i owe my unhappiness to
directly, indirectly, every day, looking at scars
a constant thrum of malcontent
no end in sight, just a lifetime of people telling me
how strong, how brave, how inspirational
and waiting for the next drug or op
i do not want sympathy
i just want to be better
i want to have energy so that i may be able to live
i want to not live in fear, or less of it at least
i want to not have to use this page
as a diary or a one-sided counsel
i just want to be better.

sort of back in action! a photo/gif essay

hello, friends and followers!

ALIVE!
ALIVE!

i’m properly back home now, after one night at my mum’s, since she’s closer to the clinic for follow up appointments, such as i had this morning, and with several more to come. yay! my energy and concentration levels are still a little lacking, so it may be a little while before i catch up on a whole week’s worth of poems, but hopefully i’ll get there.

everything’s healing nicely, according to my nurses, and i decided last night that, in the grand tradition of naming body parts (you know some people do it), my temporary stoma is called buffy.

scrunchy buffy mouth with red lips is not unlike the stoma’s appearance!

because it’s kinda badass (can i get an amen up in here for modern medicine saving lives?)

oh, ru.

yes you can.

and also it could probably scare vampires away.

i’m still getting to know the intricacies of the post-subtotal-colectomy (technically a hartmann’s procedure) world, but i’ll get there. considering how many IVs i had in (three total, plus one arterial line), i only have one substantial bruise (aside from the ones on my abdomen, of course). everything was done laparoscopically , which is great, in terms of healing time, though it means my scars will be much less impressive than if it had ended up having to be an open surgery. coming off anaesthetics was crazy – i’d never been under general anaesthesia before) – everything was so hazy and sleepy and strange, and i never realised how much i’d appreciate an extra IV just in case anti-emetics needed to be injected. the pain pump was great – although since i was doing pretty well they initially took it away on the second post-surgery day, which didn’t end so well (puking, crying in pain, the whole she-bang). i was understandably nervous the second time they posited taking it away, but my use was way down from previous days, and it all went well in the end.

i even took a surgo-selfie the night before, while dealing with the grim delight of bowel prep.

when life gives you lemons, instagram them?
when life gives you lemons, instagram them?

the nurses/surgeon/registrars/anaesthesiologists/etc were all brilliant and helpful and informative and all the things that you want medical professionals to be. the food was actually pretty decent, when i was up to eating, despite the fact that i was limited to the low-fibre menu. the hospital itself is actually a surgery specific centre, so there’s no emergency department or anything other than people on the wards and theatres for the operations, and it’s all pretty flash, almost more of a fancy private hospital feel. i had my own room, there was carpet in the corridors, i had a view of rooftops and the hunua ranges behind. pretty sweet.

hello, south auckland
hello, south auckland

i accidentally stained several of their HOSPITAL PROPERTY pillowcases and gowns pinkish. even though it’s weeks since i dyed my hair.

not weird. at all.

i also learned, over the course of coming off anaesthesia and dealing with oral morphine what colour straight bile is! that was educational.

(for the record, in my case at least, it’s a dark forest green. not unlike a pair of cords that i wear all the time. guess they’re going out of circulation for a while).

i also managed to read three books over the course of my hospital stay – bossypants, by tina fey, paper towns, by john green & city of bones by cassandra clare (i know, i know. but i work in the book industry, remember. gotta keep on top of what’s in vogue) – along with completing exactly one sudoku puzzle and playing quite a bit of candy crush saga (which i only just started playing on my second to last day, and i do kind of understand the collective obsession).

i can’t think of anything much to say. i’m mostly pretty good with the pain and whatnot, at least while the tramadol’s in my system and i’m lying prone. sitting up is possible for limited periods, as is walking around, but both kinda suck after a while. and the process of moving between sitting/lying/standing is pretty awful.

not unlike this.

but everything’s getting there.

now, buffy and i are going to have a rest and watch some gilmore girls. hopefully some proper writings will occur tonight.

the official countdown begins

Here are some numbers – I’m 23 years old. I’ve been diagnosed with ulcerative colitis for a smidge over two and a half years. I’ve had IBD-type symptoms for 4-5 years. And in 18 days, I’ll be getting a partial colectomy.

Yes folks, I’m booked for surgery. September 11th, of all days. I will be heading out to the Manukau Surgery Centre, and I’ll be there for at least 3-4 days. Approximately a third of my large bowel will be removed – though they won’t know for sure until they’re going in, of course – my last scope was in June, so it’s possibly that things are looking slightly different, but no matter what, that left side is on its way out.

I’ll wake up with a temporary ostomy, in all likelihood – there’s a lot more risk of things not healing up properly if everything is reconnected straight away. I’ve therefore been eyeing up various sassy wraps and high waisted underwear (some of the ones that Awestomy have are particularly boss, and I’d kind of like a pair regardless of whether or not I had a bag to keep safe!) – but I don’t want to commit in case my stoma winds up being particularly low or high, meaning certain garments would be more or less appropriate, depending.

I’ll also be off work for about a month. If I’d been heading for a total colectomy, it would have been more like six weeks, but a month is what I’ve been advised for this partial colectomy – thank jebus, because I’ve got approximately 18 days of holiday pay accrued (and a day and half of sick leave left), so I should just make it through without having to worry about arranging a temporary sickness benefit, which would only just cover my rent and weekly household expenses, plus $5, so that’s not exactly ideal).

I’d be lying if I said I wasn’t nervous – now that I have an actual set-in-stone date (and it’s only two and a half weeks away!), it’s all even more real. I’ve had the initial consultation (which I’ve probably mentioned already), I’ve had the preemptive MRI (to check in on my small intestine – jury’s still out on that one, to the best of my knowledge, so I’m still hovering in the ‘could-it-maybe-be-Crohn’s?’ camp), and next I have the actual final pre-surgery appointment on the sixth. And the the big show the next week. I know there are risks involved, obviously. That’s the scary part. But most of all, I am excited that there is finally progress being made. Something is getting done. It’s not the final solution – there’s another operation or two before we even think about being at that point, but it’s something – and the idea that I could wake up with most of my pain and problems gone… that’s pretty fabulous.

I’ll definitely be keeping y’all posted as things progress.

Eeek.

Love and guts,

Briar